Separate but equal?

Separate but equal? Or perhaps I could call this blog Another Side of the Seating Problem

There is one place I like to go to that has a wine shop downstairs, and a restaurant upstairs. There is no elevator. Most often we go to the wine tastings, which are downstairs, but sometimes I like to attend a wine tasting meal or just get dinner, which ordinarily would be upstairs. Their way of accommodating me is to set up a table downstairs in the private salon for however many are in my party. I don’t go to the restaurant upstairs.

I have trouble with this arrangement. It feels more like “separate but unequal” to me than “separate but equal”. The salon is a nice room, even their warehouse where they set up a table once in a while is ok. It isn’t the setting that bugs me. It isn’t the service either. By being in the salon, I’m really getting first class service as opposed to the usual coach. Once in a while they are a bit slow to come down to tend to us, but it’s rare, and if something happens (like a spilled glass of wine) we (meaning someone other than me) have to go upstairs to find help. But overall, the service is excellent.

In fact, recently we went to a wine lunch at this establishment on a Saturday with 2 other couples. One of the men is a very good customer at both the restaurant and the wine shop (he even has a wine locker there), and it happened to be his birthday. So, that day we got absolutely the best service you could imagine. We had the private room, because of me, and some special treats, because of him. I had called to make the reservation, and mentioned his birthday and that it would be nice to have a cake for dessert. They came up with the best carrot cake I have ever eaten in my life. I think they spoiled me, for I haven’t been able to eat any other carrot cake since –they are all too cream-cheesy or too sweet now. If he had been with other people he would have been upstairs.

Uniformly, everyone tells me things are much nicer when they are with me, because they can be in the salon! It’s more private, or it’s quieter. Setting is nicer, service more personal…. And I’m pleased to hear all of this. But all the same, I find it hard. It’s because I don’t have a choice in the matter. And if there’s any day when the salon is not available for any reason, I’m stuck – and most likely will not attend the event scheduled upstairs. These has happened a few times, one time when they were using the salon room for storage, which made me quite annoyed. I brush it off then, that they just don’t want my business bad enough. If this happened too often, I’d not go there at all.

I suspect that in a pinch, they will muster up the men required to carry me and my chair upstairs, but I hate to be carried. I don’t like the feeling in general, and unless there are 4 men and an easy stairway, I worry about the backs of the men doing the carrying. 4 men means an average of 50 pounds a person carrying an awkward package, which isn’t easy, but not crazy either. Any fewer people, means too much weight per person.

One day I know there will be a wine dinner, with a guest speaker – most typically the winery owner or winemaker – and the only way to hear them speak will be to be upstairs. If I really want to go, I’ll find out how hard carrying me will be. I’ve been tempted a few times, but none of the events has worked out to date.

Wine collecting is a hobby of Jim and me. We have about 450 bottles or so, most of which are aging in temperature controlled fridges. In the past 5 years we’ve learned a lot about wine, and enjoy visiting wineries and going to tastings. We keep a spreadsheet of all the bottles, with stats like price, varietals, regions they are from and when to drink them. Our system isn’t working perfectly yet, because we tend to drink more whites than reds, but buy more reds than whites. We buy cabernets because they age well, but don’t eat the red meat that goes best with them very often. Consequently we have about 20 reds in the fridge that should have been drunk in 2009. But overall, we have a good time with our wine. We throw wine parties from time to time, and invite our friends over. And we like restaurants that have wine dinners, especially if they pour them blind, or have small pours of several wines.

I find this to be one of those hard situations to reconcile. I want to fight for equal access, the ability to do what everyone else does. And yet, I am aware that what I’m getting now is probably better. So, I let it go. I have made the wine shop/ restaurant aware of how I feel about all this, but not in a very pushy way – (well I was pushy about them fixing their parking lot at one point, when they didn’t have properly painted access areas). I don’t know if a law is being broken or not. The argument the shop gives is that they are renters, so it’s really the landlord’s problem. The building was built pre-ADA, so they aren’t required to make accessible modifications unless they spend past a certain amount of money on remodeling. Plus the cost of an elevator would be prohibitive, which might exempt them from doing the accessible modifications anyway. All this sounds true to me, from my limited knowledge of ADAAG.

All the same, I have fantasized about having a dozen people in wheelchairs try to attend an upstairs event all on one day. What a madhouse it would be then!

I know the people in both the shop and restaurant, and like them. They treat me well, too well perhaps. We’re good customers, but not in their top tier for sure! Most days I just relax and enjoy whatever we are attending and don’t worry about the special service. But this is one of those events where others looking in might wonder why our party is in the private room, and if the staff says it’s because of the wheelchair, then it would generate negative feelings about people with disabilities getting privileged treatment. And those people won’t have any idea about how I feel about it, and that I’d rather not get the private room. Does this balance out being in the back room at the theater? No. They both should be better.

A Bladder Story

I don’t feel very well today. Hard to describe what’s wrong. It’s such a vague feeling. But this is how it is sometimes when you are paralyzed from chest down. The sensations are odd, you know you don’t quite feel right, but it’s hard to put together right away.

Let’s see – for a couple of days last week I didn’t feel like eating at all. I know Wednesday was one of those days, where I just couldn’t make myself eat lunch. Thursday I made myself get a Bullet sandwich from Quiznos – the smallest size – because I know I should eat, but I wasn’t hungry. Friday and Saturday were better, but today again, I’m not hungry. No, the words should be stronger – I don’t want to eat at all, and it’s an effort to do so. But, I’m not nauseous, or feeling really sick.

2 days ago, I noticed the clear tubing that runs from catheter to legbag was showing some sediment – so yesterday I changed all my tubing. It’s a little early in the month, but not out of the ordinary. Perhaps I have an infection – so first line of attack is to change tubing. Then drink lots of fluids. My stomach hole (stoma? I really should find out the technical word for that hole punched in my abdomen) bled a bit when I pulled the old catheter out. That isn’t unusual, the urine irritates the tissues it passes through, and the movement of the catheter can scratch as well. Usually the bleeding only lasts a minute, and then clots up.

This time though, while I was in the shower I could see much more blood coming out. Another sign of possible infection. It reminded me of an incident that happened in the 1980s.

At that time I was intermittent cathing every few hours. I woke up at night, knowing I should get up to empty my bladder. I don’t remember how I knew – perhaps I had leaked in the bed, or perhaps I was having a dysreflexia reaction. But it was 5 in the morning, and I got up to pee. What came out of me looked like flat coca-cola! It was urine, but was a dark brown color –and scared me to death! I called the urologist’s office right away. My regular urologist was not on call that night, but I knew the doctor on call too. He advised me to come in first thing in the morning.

I couldn’t go back to bed. There was no way I was going to sleep. About an hour later, now around 6 AM, I cathed again. This time the stuff that came out of me was blood, and some of it was coagulating. I was sure I was bleeding to death in my bladder, and panicked. Called the doctor again, who was not too happy about my waking him up, but he calmed me down saying that I wasn’t bleeding to death, but that I should be at the office when it opened.

I was grateful that my regular urologist was actually in the office when I got there. I’m sure they thought I was exaggerating the situation. They put me up on the table, put a scope into my bladder, and that immediately let out a torrent of blood all over the room. It was like an explosion – blood all over everyone’s clothes, the floor….

My husband at the time, Ranjan, was with me and was instructed to push me over to the nearest hospital – about 2 blocks away – and get me admitted immediately. The urologist would be there shortly, and take me into ER. They had to go inside and cauterize the bleeding.

It was a scary experience all around. But the scariest part was actually post surgery. Now, I can say I was probably hallucinating, but who knew at the time! I woke up in recovery, and there was a man in the bed next to me, and I thought he had said that the doctor had just visited me, and was so sorry to hear I had bladder cancer. It wasn’t till a couple of hours later when I really did see my doctor, and most likely was less groggy, that I learned I was really ok.

Their theory was that I had a bladder infection that irritated an artery in the bladder enough that it couldn’t clot – not rare, but not common either. I was in the hospital overnight. And then everything was back to normal.

So, every now and then, when I change my tubing, I think about that event. This was one of them. While I was in the shower, before putting in the new tubing, the hole continued to bleed, and I was watching. I put in the new catheter, still a little blood. I wanted to get dressed, but was afraid that the activity would make it bleed more, and make it harder for me to see, as well as get blood on my clothes. On the other hand, I wasn’t going to be sitting still enough to let a clot have time to set, until after I got dressed! So, I put Neosporin around the catheter, and stuffed some Kleenex around the hole, and got dressed. Half an hour later I took out the Kleenex, and was relieved that the bleeding had stopped.

But all of this, and my not feeling like eating, does make me wonder if I have a bladder infection. I have no fever, no pain, none of the signs that people with sensation would pick up. I am drowning my body in water, washing my insides out. So, we’ll see. If I still feel this way tomorrow, I’ll start antibiotics.

The point of my story though – is that when you do not have full sensation in your body, you have to learn to notice other more subtle signs. And sometimes it isn’t so easy to interpret these signs. It’s possible I have some mild stomach bug. It’s possible that I have some annoying things (like seeds or nuts) working their way through my intestines that is triggering a mild IBS reaction, totally unrelated to my bladder. Or maybe I have something more serious – an ulcer, or bladder cancer! But my money is on a bladder infection. So, for now, an easy diet, lots of water, and waiting and watching. If tomorrow I start antibiotics, and that doesn’t make me feel better by Thursday, I’m off to my GP’s.

Shopping

It takes 2 of us to give Jasper his medicine twice a day – one to hold him, one to do the syringe into his mouth (and his pill too in the evening). So, for the next week, I have to get up the same time as Jim. I usually go to bed at the same time, but get up an hour later – since it takes me a while to fall asleep, I compensate by sleeping extra in the morning. This coming week I might try to go to bed earlier, but then when Jim goes to bed I’ll wake up, so it’s almost self- defeating. I think what’s going to happen is that for the next week, I’m going to get 1 – 1 ½ hours less sleep a night than I want, going to bed and getting up at the same time as Jim. I wish I could fall asleep as soon as my head hit the pillow like he can!

The good news is that my new electric blanket arrived today, so at least I’ll be warm as I try to fall asleep.

What’s been troubling me today, and no doubt will be the source of my brain chatter tonight (as it was last night while I couldn’t sleep) is that bank check problem. I’m still not convinced it was fraud. I have people’s names and phone numbers that match legitimate businesses and info on their websites. This morning I found that Jim has some new lost funds being held by the CA Treasury under his misspelled name and from that same old employer! So, either that’s how the scammers got our info, or his employer had his name misspelled for some fund, which is why things got lost in the first place. Tomorrow morning I am going to get someone from the banks on the check to help resolve this once and for all.

Cats are doing well. Jasper must have been in a lot of pain. I’m sure his jaw still hurts, but it must be better in comparison to before. He came back for 3rds at dinnertime today, so at least he’s eating again. Fforde hasn’t forgiven us yet for taking him to the vet. He won’t let me pet him, though he has jumped on my lap. The minute my hands come out he shoots away, needless to say I don’t have his collar on him yet. And he’s even worse with Jim, won’t get within 3 feet of Jim!

No word yet when my chair will arrive. I may find out next week an estimated ETA.

I have been enjoying reading The Girl Who Kicked the Hornet’s Nest by Stieg Larsson, and if I could I’d just read it all the way through! But there’s no hurry. I love to read, and I think it’s a form of therapy for me too. If I don’t get an hour a day of reading, or sometimes watching a DVD, to escape into some fantasy world, then I get cranky. Other people need their exercise. I suspect my son, Stephen, gets cranky when he goes a few days without riding his bike. Jim needs time to himself to play games on his computer, especially an online chess game. Both of these are more healthy than my reading I’m sure. Stephen gets a very good physical workout, Jim get’s a good mental one. Me? I’m just relaxing and escaping.

I occasionally read in bed, like this past week with no electric blanket it helped to warm up the bed and elevate my legs to get the blood flowing for an hour before attempting to sleep. It’s not as comfortable to do as it used to be though. My neck will hurt after a while, and I have to use full reading glasses and not my bifocals. I’m very protective of my neck now so that the vertigo problems don’t come back.

I had PT today, and we suspect that my new pillow is not quite as good as I thought – just a tad too high. My neck was tight on the right, probably from the pillow pushing my head up a little too much. But overall she thought I was doing well, so I don’t have to go back for 3 weeks. Yay! I like her a lot, but would rather spend my time in other ways.

A project I’ve been spending a lot of time on is getting some photos framed. Jim and I looked through all the photos of all our trips in the past few years (which took a couple of evenings) and picked out about 30 of our favorite photos to enlarge. We’ve been to Canada (Montreal, Quebec, Vancouver), France (Paris and the Loire Valley), Italy (Milan, Venice, Tuscany and Florence, Bellagio), Switzerland (our honeymoon - ahhh, Lugano, Zurich, Interlachen, Lucerne), a couple of US trips (northern CA, Oregon) and 4 cruises (Alaska, Panama Canal/ Mexico/ Central America and Antarctica) and I almost forgot – Argentina twice. So, it was a lot of photos, and hard to get it down to 30! I had 8 x 10s made of all of them, and some came out really nice. One of Hawaii (I forgot to add Hawaii) taken from a helicopter of lava going into the ocean is very cool, and I want to make it poster size. One more I’ll do again in 11 x 14. But most are perfect as 8 x 10s. So the past few days in between appointments, since I’ve been in the right neighborhood, I’ve been frame shopping. It’s nice to spiff up the house.

This kind of shopping brings to mind one topic I thought worth mentioning, related to my disability - Carrying stuff to the car for you. I’ve noticed that in the past few years the supermarkets all ask everyone, no matter who they are, if they need help out to the car. I’m sure this is to avoid any suggestion of profiling. Probably someone someplace was offended that they were asked specifically because of their appearance, or else someone who needed help found it hard to get because they don’t look disabled. I think it’s a good policy, and harms no one, to ask everyone, so I applaud the change. If I’m only getting 2 bags worth I say no, otherwise I usually take the help. At home I have to carry the bags into the house one at a time, but I’m not in a hurry. Most times if it’s a large grocery run Jim goes too.

At Aaron Bros today I bought a pile of frames, and they were very willing to help carry them out, no problem. In fact, I rarely have a problem, except for one store – my neighborhood Target store. I don’t know what it is, because it seems like there are employees everywhere in that store. I get to checkout with a cart of stuff, and I’m ok pushing a cart inside on smooth floors. But there’s never anyone around who will push the cart out to the parking lot . Grocery stores have baggers. In other stores, like Aaron Bros or even shops at larger malls, the checker themselves just gets up and takes stuff out. But at Target, the checker isn’t allowed to do this. They push the call light and get on their phone to the loudspeaker that customer assistance is needed for carry out, and then they get on with the next person in line. And I sit and wait, and wait. Often it takes 2 or 3 requests over the loud speaker. One time the wait was 15 minutes. In fact usually the person who eventually helps me is a supervisor who is taking pity on me sitting there so long, and most often they say they are happy they get to go outside for a few minutes, being generally very gracious about it all. The next time I go into Target though, my plan is to start with saying hi to the manager and telling them that I’m buying large items (toilet paper, laundry detergent and paper towels) and will need help out, and then say that if someone doesn’t come when signaled within 3 minutes then I’ll just return the whole pile. What is reasonable – 3 minutes? If you sit at a traffic light, one you think is really slow and taking forever, and then you time it – you’ll find it’s less than 3 minutes. In fact I did some minimal online research and most people can’t stand more than 2 minutes. There was one site for bikers, whose bikes aren’t heavy enough to trigger light changes, asking how long it’s reasonable to sit there before going through.

I don’t have a problem asking for help, at least for simple things like carrying packages and holding doors. I will carry everything if I can, and only ask when I’m buying more than that, so I’m not abusing the service. And I don’t buy so much that I have to rely on neighbors at home. Either I carry it all in, slowly, or wait for Jim to be home. I once had trouble with asking for help though. I think it’s a stage you go through for a while right after injury, as you are learning your limitations. You get this “damned if I’m going to change my whole life just because of this stupid wheelchair” kind of attitude. And though it seems ridiculous to put yourself through that, in retrospect, that attitude is probably needed. It’s how you learn your limitations, through failure – when you drop that grocery bag in the parking lot and break a bottle of olive oil or wine or a dozen eggs (I’ve done all three).

A Long Day

I debated calling this entry The Good, The Bad and The Ugly, but I have no idea what that movie was about, so I may be suggesting a comparison that doesn’t fit. But the words themselves are right.

The Good News – I ordered a new wheelchair today, or more accurately I signed the document saying I wanted a certain chair, and the order will be submitted tomorrow. Cost $4300, all of which supposedly my insurance will cover.

The Bad News – Jasper had 3 teeth pulled today. We noticed he was eating less last week. He’d run up at dinnertime all eager, but then just look at the food and walk away. He was clingy with us, but would seem to slap Fforde with little provocation. I looked up side effects of his medication, but usually it causes an increased appetite. So, we weighed him, and he had lost half a pound! We had already decided to call the vet first thing Monday morning, but I played around with the internet and found that cavities or toothache can cause the exact symptoms Jasper was having. And he hadn’t had his teeth cleaned in over 3 years. So, when I made the appointment for today, we also planned to have his teeth cleaned (and Fforde’s too) even if that wasn’t the cause of the loss of appetite. Bingo! One little front tooth was loose. One premolar had a cavity, and one back molar had an abscess. Poor kitty, he did have a toothache. The vet couldn’t tell from the exam at all. He must be feeling better though, he’s eaten more this evening than several recent days all together. But we have to keep watch over him, and he’s now on antibiotics.

The Ugly? – Between vet visits, and going to the medical supply place, and some errands, and home to talk to the gardener and do 3 loads of wash and pay bills – I also had one long visit to the bank. It seems that we’ve been hit by a bank fraud scheme, where supposedly someone tries to give us money (in a way that seems totally plausible I might add – being contacted about lost funds) in order to cause the check to bounce and consequently get our bank info. It’s incredibly sophisticated and names of 2 well known banks are on the check. They didn’t ask for personal info, like bank account numbers or SS#, just to verify your address which they already had. I’m still finding it hard to believe this is bogus, they were that good. Tomorrow I’ll be giving all the papers to the fraud department of our bank to let them sort it out. I may send the same papers to the other big name banks too. It is seriously weird, and a bit scary as well. Apparently what saved us from getting caught in their scheme was that when we tried to deposit the check, we had enough money in the account (several thousand) that we didn’t overdraft. A week later our bank told us the check was no good, but we hadn’t spent the money, so no notification went back to that source. Honestly, I still don’t totally understand it. It was a lost fund supposedly from Jim’s employer from 1981 – 1987, probably that should have made us suspicious – that’s a long time ago. But you see, recently we found other lost funds for Jim in the CA state unclaimed office (probably where the scammers got our info) that’s from even longer ago. When an agency called trying to help one of the big banks find owners of accounts (their story) they gave their names, phone numbers for me to call back. It was not the usual way a scam sounds.

Anyway, all together it was long day. Not much of it was disability connected, aside from handling the chair purchase – that was about 1½ hours of time. Nope, today was taking care of chores, running the house and finances, and taking care of my babies. And in the end, everything is ok – Jasper is going to be fine, and a financial crisis was averted. Tomorrow though I want more time to read my new book!

Reading time

I have time, I have energy, and I have a draft of a blog entry started - about wheelchair dancing. But, what I really want to do is read The Girl Who Kicked the Hornet's Nest. If you are interested in a good read, try Stieg Larsson's first book - The Girl With a Dragon Tattoo. The first 50 pages or so is a little hard to muddle through, but you will be rewarded for sticking with it. His 3 books have taken Europe by storm, and today the 3rd one was released here in the US. Too much to do, too little time!

Cars

My car is in the shop today, not for work on the car itself, but for repair on my Chair Topper. For those who don’t know what a Chair Topper is, a little explanation – it’s a box that sits on top of the car, looks like a big white hamburger box. When you push a toggle switch on a telephone cord attached to the dash, it cracks open. Out slides a flat plate towards the driver side of the car. When it has opened about 2 ½ or 3 feet, the plate flips from horizontal to vertical, and a giant bicycle chain lowers a giant bobby pin down on the outside of the car to chair level. I slide the bobby pin under the seat of my folded chair and everything happens in reverse. The chair raises up till it gets to the top, and then flips so that it rests on the plate and then slides into the cozy but rather unsexy box.

These Chair Toppers have been around since the mid 1980s, a pretty low tech device actually, though almost every time I go out I have a lot of onlookers who oooh and aaah. I have had one since 2004, and compared to other adapted vehicles I’ve had, it’s given me relatively little trouble. It isn’t for everyone though. I have to take my chair apart and put foot pedals and arms on the front seat, which requires good use of your arms. And I transfer into the driver’s seat, so someone who needs to drive from their chair won’t want this device. Anyone a little stronger than me can probably do without, and just pull their chair into the car behind the driver’s seat. So, the Chair Topper satisfies a rather small market.

Last Saturday I thought my Chair Topper seemed to be making some clangy noises, even though it was working well enough. I took a look at the full cycle, from outside the car sitting in my wheelchair, and could see a spring banging around not attached to anything. So, Jim and I took my car to the service place I usually go to, and put my key and a note into their night drop box to be looked at on Monday, today.

Called at 10:15 AM – they hadn’t looked at the car, but the woman assured me she had written up the ticket for it, but couldn’t promise that anyone would look at it today – they had a busy schedule. I pushed to say that I really wanted it back today, and she said she’d look into it.

There are very few places, even in a city as big as San Diego, that can do service on adapted vehicles. There’s this one in Kearny Mesa, one in Poway and one in National City (for all the local folk who know these places.) If there are more, I don’t know about them. I go to this place because it is convenient, though the service is spotty. Sometimes if I go in with some small problem, they take the time to get me back on the road quickly and won’t charge me. Other times they hold the car forever and then don’t seem to fix it. I’ve heard horror stories about problems with vans there, but luckily I haven’t had anything seriously wrong with any service I’ve had. My biggest problem is that they can be slow to respond, especially if you aren’t sitting there waiting for your car.

4:15 the service department called back to say that yes indeed a spring had broken, and they did a temporary fix, enough to get me on the road. A new spring had to be ordered and it would be either 2 days (if the part comes from Arizona) or 4 days (from the east coast) till the part will arrive. And then we’ll schedule a day for the repair. Today, no other service was performed, so no charge. I had asked them to check over the whole system and the hand controls while they were at it. All this is fine, assuming that next Monday, or whenever they replace the spring, that they don’t find some other part needing replacing when they do the service. Then they’ll order that part, and it goes on and on. And each time, I’m either out a car for the day, or I’m sitting there waiting 3 hours for the work to be done. Just like any other repair work really, except that I have to go to one place for the car and another for the extra equipment. So, now I’m home. Later after dinner Jim and I will go get my car. They put it in the parking lot, and I have a spare key.

But this has made me think about cars in general today. I can count the number of cars I’ve driven in my life on my fingers. I bet most people over the age of 25 can’t do that. Possibly a lot of people under 25 too.

First was the driver instructor’s car. Then my parents had 2 cars with hand controls – a Chevy II wagon and an AMC Hornet. Within my first year of driving I had my first car accident and totaled the Chevy. Not MY fault! It was my car’s fault, not totally mine. For some reason the power died on the car, and without power to the brakes, I couldn’t stop the car even though it was only coasting. So, we coasted into a couple of cars waiting at a stop light. Seat belts in those days were not retractable, so I couldn’t reach the emergency brake, and I didn’t know to throw the car into Park (that’s where my fault comes in). Live and learn. I never loaded my own chair into any of these vehicles. If I was going out somewhere, someone at home would put my chair into the back of the wagon, then whichever friend I was going out with would take it out later for me.

The next car I drove was the first one I owned myself, a 1975 (bought when 4 years old) navy Volvo 164E with sunroof and heated seats! Pure luxury. My first husband and I drove it across the country in 1979. I learned to load my chair onto the front seat of the car out of necessity, on the day he took off on a plane for a few months’ trip back to Sri Lanka. I can still remember that day clearly. We had put a pulley up onto the hand hold on the passenger side for me to use to winch the chair up. I attached the hook and rope to the chair and it floundered about, so my brain said “to hell with this”, and I yanked it up onto the passenger seat without the pulley. Took all my strength that time, but eventually I figured out the best way to pull so I could roll it over the side of the car and not really lift. I finally had to do it, so I did.

Vehicle #5 was a van with a lift, bought in 1985 or 86 when David was about a year old. I had been lifting him into a car seat on the back seat, and he was getting too heavy for me. Plus we wanted another child, and there was no room in the car for me to transport 2 kids. To put the chair on the front seat I had to lean it back, so the back seat behind it was not useable. This Ford Club Wagon served me well for 11 years, truly a work horse.

I replaced it with a mini van, Plymouth Voyager, with a ramp, that I hated almost from the day I got it. I should have gotten rid of it after 2 years when I knew it was never going to work out, but stuck with it for 4. The less said, the better – but I had trouble with everything that could go wrong with the adapted equipment, not with the car. So, in 2000 I went back to a big Ford Van, similar to the one I had before.

Which brings me to my Toyota Avalon, which is by far the most fun for me to drive, most comfortable, and I’m hoping it will last forever. In 2004 I was going back and forth between coasts, to spend time with Jim, but really live in Maryland till Stephen finished high school. I had my van in Maryland, so we bought me the Toyota for San Diego. After we married later that year I had 2 vehicles for a while till I decided which type I preferred. I sold the van the next year, and haven’t regretted it. But the van was a decent vehicle, and I hope someone else is still enjoying it.

That’s 7 vehicles only so far. I’ve also driven a total of 3 rental vehicles in my life. Once was when we moved to Ohio, and my van, which was being shipped, wouldn’t arrive for a week. Then later when Jim was living in San Diego, and I was still living in Maryland and we were doing our coast to coast thing – I rented vehicles here each time for a week. Twice these were big vans, once was a mini-van. Renting adapted vehicles isn’t hard, but does need well-in-advance reservations, and is costly. You can rent ordinary cars from Avis and Hertz (probably others too) which they’ll put hand controls on with one days’ notice, but I’m afraid to. Their hand controls don’t work quite the same way as mine. I push to brake, and pull downward to accelerate. The rental cars pull to brake and push to accelerate. I might be ok with no other cars on the road, but in an emergency I’d probably panic and slam the handle forward – and end up right in an accident.

Jim asked me not long ago, that if I could have my pick of any car in the world to drive, not having to worry about whether my chair would fit in the trunk and all the other things I had to keep in mind for the hand controls and Chair Topper to work, what would I pick? So hard to say! I’ve driven precisely 5 cars, 3 vans and 2 minivans, not much experience. I found I’d be picking a car for its looks only. I used to dream of driving a VW Beetle, and even now I think they are cute, ditto the Mini Cooper. I like the tail lights of the Subaru Outback Impreza with the red bar all the way across, and the tail lights of the Volvos are kinda cool. If I’m looking at the fronts, I have to admit that the BMWs have a nice look.

Honestly, what is it like to drive sporty cars, convertibles, fast cars that corner well, low riders or high SUVs, little cute ones or ones with good gas mileage? I’d like to try out a Prius, and other hybrids. That would feel like a good thing to do. It’d be sort of like dating a lot before settling down with the right man. I have the right man (both my car and my man) now but it might have been nice to play around a bit first. For me, I have to buy the car first, then spend a bunch of money on it and make it unreturnable, then TEST drive it.

I hope my Avalon lasts a good long time. No recalls on this one, yet, knock on wood. I fully expect that at some time my shoulders will complain about lifting the odd parts in on the front seat, and then I’ll have to consider going back to a big van, or being brave with a mini-van. I’m told they are much improved since 1996.

So, that’s what my car history is like – 36 years, 10 vehicles. I’m lucky though, I’ve always had at least one car to drive and never had to rely on public transportation alone to get around. Each vehicle had 2 repair shops, and the adaptive equipment generally causes more down time than the vehicle itself.

Chair and electric blanket

I spent about 3 hours today on sorting out the order for my new wheelchair. Yesterday Mobility Solutions sent me an email with a form to sign saying I’d pay anything over $5000, and a copy of the paper that went to insurance listing all the items that had a specific cost.

First thing this morning I looked it over carefully, and there were several items that didn’t look right, so I called to see if I could look at the Dr’s letter of Medical Necessity, and the order forms for the chair itself. The girl was surprised, but not nasty about it, and the easiest thing was for her to make copies and me to go up there and look them over. Seemed easier for me to look it over and try to figure out if the errors were in the doctor’s prescription, or how that got translated into the order form, or how that got translated into the insurance form or then how it got sent to me! After all, I’m the one who knows this chair the best, and who cares the most!

Good thing I did too!

The doctor’s letter was fine – it was basically my draft letter, with 2 extra paragraphs about items I had forgotten to list.

But there were 3 mistakes on the order form and 2 known ones on the itemized insurance list. I suspect there are 2 more errors, but the way the list is typed up the descriptions and prices don’t match the order form, so it’ll have to be checked.

Mistakes on the order form:
1 - Wrong arm rests- didn’t have it listed as ones with transfer loops.
2 - Missing measurement from seat to foot for the footrests
3 - I changed the color of my spokes to yellow from black – very minor detail.

Known mistakes in transferring order to insurance list:
1 again - Wrong arms of course from above
4 - Missing request for Frogs legs

Two very likely mistakes too:
5 - I wanted back tires that cost $95, but ones costing $85 were listed, small amount of money, but could mean wrong tires are ordered.
6 - Bigger problem is I wanted front tires that cost $195, but ones costing $86 were on order, so I bet anything the wrong ones were put in the system.

A couple of other things that were confusing to me were actually ok.

The woman I talked to was nice enough about it, but the woman who does the insurance stuff isn’t there till Tuesday, so we wait for her to clean this up.

Next Wednesday, I think I’ll go back there again, and see their new pages. Not signing anything saying I’ll pay the difference till I’m satisfied things are right. Hey, if the chair comes back and something is wrong with it, I want it to be my own fault!

************* NEW TOPIC******************

Two nights ago my electric blanket died. Instead of heating the blanket, it was super-heating the spot where the plug enters the blanket – not a good thing. It’s a low voltage blanket, so there wasn’t a huge fire risk, but still not good. The plastic was turning brown.

I use my electric blanket year round. In the summer, even when it’s hot outside, if the air conditioner is on, it’s likely I’ll turn the blanket on for half an hour before I go to bed. I’ve been known to take it on vacations with me. I’ve used an electric blanket since I was in college, over 30 years now, and I’ve lost count how many I’ve had.

This one lasted 2 years. Supposedly it had a 5 year warranty, but I’ve never had one last much longer than 2 years anyway. In fact, this one was possibly the best I’ve had in 15 years! When I first started using them in the late 70s, the blankets got very hot, and sometime in the 90s some safety standards were set, so that they didn’t seem to work very well, even though they were better than nothing. This new one, used a low voltage technology, for safety reasons, but somehow could then have more and smaller wires – so you don’t really feel them, but you can put another blanket on top, and it is really warm. I’ve already ordered another one exactly like it.

Most blankets say that you shouldn’t use them with people who have limited sensation, which means me. I can’t feel my skin any lower than my nipples. But honestly, these blankets improve my quality of life SO much, that I can’t give them up. When I go to bed at night, even in summer unless I’ve been out in 85 degree heat, my feet are like ice. My circulation is so bad. This is not unique to me! For paras and quads, our circulation is bad, the blood pools and cools and is slow getting back up to the heart. Our feet tend to swell as well. I wear support socks in the daytime which helps, but isn’t enough. For most people, the action of walking around helps pump the blood back up again. For us, putting our feet up helps. By morning my feet as toasty warm, just from the easier blood flow, even without an electric blanket.

I have days when my upper body feels fine and comfortable, and I’ll start shivering because my legs are cold. It’s a strange sensation. And when I first lie down I especially feel cold, though I’ve never understood why. Perhaps it’s taking off clothes and those support socks, perhaps the cold sheets make it worse, maybe there’s something about a blood pressure change. For whatever reason, if my bed is cold, I’m pretty uncomfortable, and it doesn’t help me fall asleep.

For almost as long as I can remember, and at least since my grad school days, I have had enough trouble falling asleep as it is. Aches and pains keep me up sometimes. Jim’s snoring did for a while, but that’s much better now that he has a c-pap. The cats will occasionally keep me up too, when one of them is up next to me and I can’t get into a good position without disturbing them, but I know that’s my own fault- I just need to move them, but they look so sweet when asleep! And there is always my “brain chatter” (to borrow Jill Bolte Taylor’s words). I think about activities coming up the next day, wording of letters I need to write or want to say to someone, sort out stories I’m reading, and worry about people. I much prefer it when the only thing that is keeping me up is my brain chatter! That alone is enough.

But till 2 days ago, I had been taking my blanket for granted and had forgotten how much feeling cold keeps me up. Even with an electric blanket I used to have problems with the cold. In fact, electric blankets were part of the reason I have so much brain chatter! I would turn on the blanket before going to bed, then stay in the warm bed for an hour or so before going to sleep. The trick was to be awake enough to turn off the blanket, but sleepy enough to not mind when the chill crept back in with the blanket off. Sometimes I’d fall asleep too fast and not turn off the blanket, and then I’d wake up 4 hours later totally boiling and covered with sweat. I suspect it was dysreflexia sweat, but it didn’t matter – my feet would be red and splotchy, and I felt like I was cooking. Other times, I’d turn off the blanket too soon and 20 minutes later I’d be awake and cold and turn it on again, to start over.

Blankets have an automatic turn off feature, but usually that’s after 8 or 10 hours, and most people would be ok with that when the blanket is on low. I like my blanket on high, of course.

About 5 years ago, Jim pushed me to find some other timer gadget, because he was sure there had to be something out there. And he was right, I found something that is mainly meant to be a light timer, but it has a count down feature. So, if you turn it on, whatever is plugged in will automatically turn off after an hour (or whatever time you set). It was an amazing thing for me! I could then allow myself to fall asleep and not worry about getting too hot! And I’ve used it every day ever since. If I’m still awake after one hour I might restart it, but rarely do I restart it twice, so rarely is it on more than 2 hours.

Duvets work really well, but Jim gets too hot. If he peels it back off him, then I get it doubled, and even I get too hot. The electric blanket works for both of us. It’s thin enough for him, and not too hot if it’s not on on his side. He doesn’t even have the wiring hooked up for his side.

I’m glad it’s not winter, when I want the blanket most. But even so, for the next few days till the new blanket arrives, I’m going to read in bed for an hour before trying to sleep. Lying down helps to start the blood flow and I’m not quite as cold when I turn the lights out. Perhaps I should write a letter to the blanket manufacturers, suggesting a timer feature that the sleeper can set themselves?

Why a new chair?

Someone asked me a couple of days ago, why I needed a new wheelchair. I suppose I am too long winded in my blog, that this point was lost. Or perhaps I talked so much about what I WANT vs, why I think I NEED some features, that I never really said why I was pursuing a change. In 5 years when I reread these blogs, it might not be clear to me either! So, it’s a good question, and I’m going to try to answer it.

Most insurance companies will typically be willing to pay for a new manual wheelchair every 5 – 6 years, so I’m right there. My chair is now 7 years old. But that is more about when, not why.

Reason 1 – I need a new back. The reason is to improve my posture, and hopefully reduce how much cervical vertigo I get – an ongoing problem for 2 years now, and one I do daily stretches to keep under control. It took about a year of regular physical therapy to get to this point, and I still go back periodically for tune-ups. I tried just getting a new back about a year ago, but the one they suggested caused problems with my wrist. So, I am going to try yet another style. To retrofit this chair, I would also need new back canes.
Cost – guesstimate: $800

Reason 2 – Got to make this chair easier to push! Reason – to help my wrists, especially my right wrist, which I’ve had a problem with de Quervain’s tendonitis now for a year. For this I’ve had 2 cortisone shots, tried some physical therapy, had a LOT of rest, and have considered surgery. At the moment I am doing ok, and the condition is holding, but not fully healed.

There are 2 ways to make the chair easier to push – one is to reduce weight, so a few of the features chosen are with that in mind – lighter wheels, simpler foot rests, and a titanium frame in general. All but the frame could be retrofitted to this chair if I wanted to. Cost – for wheels: $700, guesstimate for foot rests: $300

The other way to make a chair easier to push has to with features you can add for this purpose – the Natural Fit handrims, and a higher pressure set of tires.
Cost for rims: $300, cost for tires: $100

Reason 3 – Wheel locks, or brakes are finally more than I can stand. The reason is that I’m sick of bruises on my right thigh as I transfer out of bed. This problem got much worse after getting the tempurpedic bed, but I like the bed, easier to change the wheel locks.
Cost: $400

Reason 4 – last but not least, some parts are just wearing out, and will soon be in need of replacement. My armrest is on a post, that goes into another larger flat section below it that has a shield against dirt at the rear, and a transfer loop handle at the front. The whole thing goes down into a slot on the frame of the chair. The post of the armrest has wholes in it for adjustment of height and these periodically get worn, and loosen, and eventually do not hold. I can make a temporary fix, by changing the height of my armrest, essentially using another hole, but it isn’t ideal.
Cost: $250.

Plus my chair has a clicking noise that mechanics have looked at but cannot find the source of. I thought it was the front wheels, but with all the changes to the Frog’s Legs and new wheels put on at the Abilities Expo, now I know that’s not it. My guess now is that it’s in the frame somewhere. If I were to keep this chair I would want it looked at more closely. I can’t even imagine the cost honestly, without knowing the parts involved, but I’m sure the labor alone would be $150.

All together if I retrofit this chair, to satisfy all the things I really need to do, the total cost would be approximately $3000 (could be more depending on the source of the click), and that wouldn’t give me the titanium frame. For $2300 more I get a whole new chair, and hopefully another 5 years before I have to think about changes again.

I do think of things in terms of cost, as if I had to pay for it myself. Like an old appliance, if it costs more than half the total of a new one, just to fix it, and it’s near the end of the expected life of that appliance – then time to get a new one.

Because of my insurance the cost is in some ways a moot question though. They are willing, so I’m taking advantage of it. The risk for me is that it’s only May. If I need some other durable medical supplies during the rest of this year, I may not have insurance money for them. This is a risk I’d be taking any year I get a chair, and I’m ok with it.

The last reason perhaps for getting a new chair, again is more related to when as opposed to why. As must be obvious to all, the process of getting a new chair takes months. It’s not the kind of activity you want to go through in a hurry, so it’s better not to wait till you are in REAL need. I’m close to that REAL need point with my wrist already. For me, the timing now is right. I do have a spare chair in case something happens and this one is not usable, but it’s even heavier and harder to use than this one. I’m really looking forward to a new chair now.

Insurance Approval

Insurance Approval (of a sort)

Today, I called Mobility Solutions to see if they had heard back from my insurance company. They hadn’t, but they would call and check, and let me know. Just before 5, I got my call back.

The information had been sent to the insurance company last Thursday. And Mobility had a confirmation fax reply saying they had received the query. But, when they were asked about it today, ins couldn’t find my file, of course. 7 hours later, an answer did come through.

Apparently, our insurance company is just managing the account, it’s really a self-insured program with Jim’s employer and the employer sets the rules, so there are some less common twists to how this works. Instead of the ins co pre-authorizing anything, or allowing some things and not others, and instead of itemizing how they will pay for any particular item – it seems that they will pay out up to $5000 per year either per person or per family (this point is still not clear) for whatever durable medical supplies you want. What I don’t know yet is whether my urological supplies counts toward these DMEs or not, but even if they do I haven’t spent more than $500 on DME so far this year. And as it happens, I have enough supplies to last the rest of the year too.

Then the insurance co said that they have some standard arrangement that they will only ever pay 80% of retail for a wheelchair. This means that my chair, priced at around $5400 retail, will get insurance money of $4300. If my urologicals were $500, that means $4500 left, so I’m good! What’s confusing to me, is why Mobility Solutions is ok with this, but that’s because I don’t know how much Tilite is expecting them to pay for the chair before they resell it to me. Still, Mobility seemed to be ok with this arrangement, so why should I complain? I trust Tilite must be ok with it too, or they wouldn’t sell through Mobility. It’s sort of like the insurance co setting their reasonable-and-customary amounts, but being very arbitrary about it.

The most curious part is that the way this is set up it seems I can order anything I want, really high end whatever, and if it’s under that $5000 line they’ll pay. It’s a good thing I don’t want a power chair!

If however my chair were over $5000 then I have to pay the difference.

Tomorrow I’ll call insurance myself and find out how much of the $5000 has been used, but I’m pretty sure there’s at least $4300 in there left. The worst case scenario might be – finding out later that I will have to pay the 20% after all – or $1100. This, I can handle. Well the worst case I suppose will be finding out later they won’t pay at all, but it seems highly unlikely.

Tomorrow also, they are sending me a document I have to sign saying I’ll pay whatever difference is due, plus they’ll send me the final draft of the order for the chair for me to double check.

With any luck I’ll have the order in by Monday, isn’t that exciting! And the waiting starts again.

Now, why couldn’t the insurance company tell Mobility this back in April when they first called for verification? If I hadn’t called Mobility, and Mobility hadn’t called the ins company I think we’d all have waited a long long time for a reply. Which is, of course, the way insurance companies like things.

But, moving on – another step of the process is almost done.

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Update on my wrist – continuing to get better! Every now and then I do something simple and my wrist reminds me it isn’t fully healed. I got some water drips on my hand yesterday, shook it well to get the water off – OUCH. Bumped it going around a doorway – OUCH. And often by the end of the day, it’s a bit tingly. But I’m doing really well with patches once in a while during the day and naproxen sodium sometimes when I go to bed. 2 advantages of the pill - firstly I can’t pull it off in my sleep at night, and secondly that it helps any other aches and pains I have too, and so it even helps me get to sleep. The advantage of the patch in the daytime is that I’m not messing up my stomach 24 hours a day. During the day if my neck or shoulder or elbow are sore, I can live with it. Most days, luckily, the only thing that hurts is my wrist. I have had some days where I haven’t used either medication, so I know overall it’s doing better.


Update on the rest of my life? – Jim was supposed to be traveling this week, but last Saturday while dead-heading roses he twisted his back, and was in a lot of pain in his upper back – near shoulder blade and neck. He did not relish the idea of sitting in a plane for 5 hours (or more) flying to DC, and didn’t know how long it would last or if he might need to see a doctor, so canceled his trip. He’s doing much better now, it wasn’t very serious, but it did change my week a bit. I was looking forward to a lot of time alone to do more writing. I’ve got a couple of other things in the works besides my blog now. I really need to rearrange my life better so I work on higher priorities first.

And I’m in the process of lining up another house project – painting the eaves, fascia and driveway. We’re looking at June or July, and it’ll mean having workers around the house for about 2 weeks. This time though, it’ll be easier on the cats – the workers will be outside!

on seating...

On seating….
And A Night at the Opera

I have started this blog entry 3 times and had trouble with it every time. The topic is very large, so I have a lot to say! And at this moment I have a lot of passion about it too, related to the San Diego Opera and the venue where the operas are performed, the San Diego Civic Theater. While writing it, I have had to remind myself several times that I’m writing for myself first! If it’s long and a bit dry, so be it. I post things because I do hope some will be interested enough to read my opinions, but the bottom line is that I write what I need to.

I stay in my chair all the time in my own home and when I go out, and you would think that when other people are seated that would make us more similar, and lessen the differences between our perspectives at least for that moment. It helps, really it does. I appreciate when people sit down to talk to me, being at the same eye level is more comfortable.

Arranging chairs in a space for the benefit of both people who can get in and out of chairs, and for those who bring their own chair is not always a simple task. Medical offices and waiting rooms almost never have an open space set aside for a wheelchair to slide into. They try to pack as many people into a small space as they can, which gets translated into ‘as many chairs’ and wheelchairs are forgotten. I will try to put myself in the most out of the way spot, sometimes blocking 2 seats if they are empty, or blocking access to a water fountain or magazine rack. I can’t blame the offices really, but from my point of view it is sometimes tiresome to feel like you are always in the way. Sometimes I end up sitting near a receptionist window, which may feel intrusive to people checking in, but where am I to go?

Even in my own home, deciding how to arrange the furniture in the living room was difficult. I only use that room for watching TV, or when we have visitors. For TV I would like to be in one spot, but then a chair would have had to sit out all by itself, and there would be a big gap between it and the closest table, unless I and my wheelchair filled the gap. It would look odd. So, instead I sit on the end, which turned out to mean I had no table for MY glass of wine. I solved that problem by getting myself a little one foot square pedestal table with a mosaic top that I can call my own. Most people’s living rooms and family rooms are similar, there’s no place for a wheelchair to fit in among the furniture, except for the access route that every takes getting in and out. At book club meetings for example, I routinely block the opening, and if someone needs to get up, I move out of the way. I mention people’s homes not as an example of how ‘bad’ things are, but how even in the easiest of situations, some accommodations are made. Even in my own home, the arrangement is not perfect. And if there happen to be 2 people using wheelchairs, things get a lot more complicated. When my SCI support group is over, we move all the chairs away from either the breakfast room table, or an outdoor patio table, and that works ok. But the living room? No way!

Seating – where do you put those wheelchairs? What do you do with people who can’t get into chairs? It sounds like a simple problem, with a simple solution – remove a chair and slide a wheelchair in that space! The real problem though is with places where there are fixed seats, that you cannot remove. There are occasionally difficulties in public places where the chairs can be taken away, and in those situations the problems have more to do with access to the seating area (because of steps or other obstacles, sometimes even because of other tables and chairs).

Think of all the places you have fixed seats – theaters, sporting events, airplanes and other transportation, some restaurants, airports or stations, medical offices and waiting rooms… many of them present problems.

The ADAAG has helped a lot in this regard, so that in most venues there are guidelines on how many wheelchair spaces have to be allocated per how many total seats, and requirements are given that the people in the wheelchairs have to have the same line-of-sight as people in fixed seats. This concept is a little hard to understand unless you’ve been forced to sit with a poor line-of-sight. Take a movie theater, with stadium seating and nice comfy seats that tilt back just a little. Ideally you put an imaginary body into one of those seats and draw a line from the person’s eyes (perpendicular to the head, not looking at their feet!) to the screen. Most wheelchair seats do not recline, so the angle from a wheelchair user’s eyes usually goes horizontal, perpendicular to the floor. If the wheelchair is too low in the theater, the person has to tilt their head back to see the screen, since they cannot tilt their body and chair, and after 2 hours of this someone can be in serious pain.

The ADAAG also has guidelines about dispersed seating in larger venues, so that wheelchair seats might be found in all price categories, with many options for types of viewing. I used to remember all of the ADAAG guidelines, from my days in Maryland working on various Access committees, unfortunately I’ve lost the details. But my memory wants to say that if there were more than 600 seats, then there had to be dispersed seating in more than one location. So, smaller venues are likely to have only one choice for accessible seating.

Medical offices and waiting rooms, and I believe airports and other stations too, don’t technically have “fixed” seating. Those seats might be bolted down, but they are considered furniture, and the ADAAG does not address furniture! There are no guidelines for bed height, chair stability, GYN exam tables, table knee clearance unless these things are bolted to a wall or floor! Unless you are in a prison or in your own home, you can’t count on a bed being at the right height. Prison beds are fixed to the wall you see. I did some research on this once, mostly trying to figure out something related to GYN tables. Word has spread though about table height, so it’s no longer a problem getting my knees under a table in restaurants. And some fast food places with fixed tables and seating attached to the tables, will have an odd table with a seat missing and a notice saying something like Handicapped Access, or Priority Seating for people with disabilities.

New sports arenas, like Petco park, and Oriole Park in Camden Yards, have very good seating arrangements. Petco Park has more ramps to go up or down to the accessible seats than I would care for, but overall they have done a good job. Wheelchair baseball fans should check out Oriole Park in Baltimore though, it’s amazing. You enter on the main floor, no elevators or steps or ramps to get to the bulk of the food vendors, or the best accessible seating. You enter through the vending areas onto a level ring of accessible seats all around the stadium. From that ring, seats go down to the playing field, and up into the rafters. I’m sure you can get cheaper accessible seats that you have to take an elevator to, as well as box seats, and seats right behind home plate. But if you want to, a person in a wheelchair can get to their seat, all the food, bathrooms and shops without going up a single ramp or in a single elevator. It’s amazing architecture, and the reason it works is that they bothered to dig a hole deep enough and put the playing field down quite low.

Not all sporting events are well designed however. Some of the worst I went to were my kids’ little league or soccer games. Sometimes there was no parking where I could put the lift down on the van I owned at the time. Sometimes there was no pavement from the parking to the viewing area, and it was gravel, sand or mud (Maryland gets rain). And sometimes the viewing area was so badly arranged that I’d have bleachers blocking half my view. I watched a lot of youth games from the driver’s seat of my van, which wasn’t all bad really. I could listen to a book on tape at the same time!

Airport waiting areas present a different kind of difficulty – crowds. Usually near the gate counter there are a few seats marked as Priority Disability Seating, or some wording like that. I don’t actually need one of those seats, but I do like to sit with the people I’m traveling with, and I do like to be near the counter because of pre-boarding. If I’m not visually close to the gate counter, there’s a higher chance I’ll be forgotten. Even though I don’t really care if I board first or last, the airline people DO care. It’s easier for them if slower customers preboard, rather than get in the middle of the line and slow it all down. And for people like me, who put some wheelchair parts overhead, it helps the flight attendants to let us get all the stuff in the bins early, so they don’t have to figure out where to put things later. The frame of my chair goes in the belly of the plane, which takes time to get done as well.

I am going to digress for a minute – one of my pet peeves is seeing people pre-board with some disability, only to be one of the first to dash off when the plane lands. I may be first on, but I’m always last off, and I think that if that policy were enforced with ALL people who pre-board, you’d get a lot fewer people with “disabilities” on the plane! It used to be a huge problem on Southwest, for pre-boarders had a huge advantage in getting seats. Their move to assigned boarding slots fixed most of the problem. I used to hate flying Southwest because of the cattle call feeling, even in the pre-board area. Now, it’s one of the easiest airlines for me to fly. They have the best service getting me and my wheelchair on and off the plane smoothly.

But, back to the waiting area – You’re at your gate, the flight is late, the waiting area is full and spilling over, where do you go? Theoretically, the people in the designated Priority seating area are supposed to give those up for others with disabilities – but do they give it to me? My husband? There are no clear-cut rules on this, and no enforcement. The only time I’ve seen people give up a seat for someone else with a disability, wheelchair or not, is on the San Francisco MUNI buses (or maybe some other buses too) where the bus driver goes over and tells people to move, folds the seat up so there is room for me and helps me get the chair locked in place. Usually someone will give up a seat nearby for Jim too. This works because the bus driver enforces it, and because a lot of passengers are traveling alone or in pairs, and not toting multiple suitcases.

A long time ago, when my kids were about 7 and 9 years old, and I was still married to their father, we took a family vacation to Philadelphia and visited with my brother and his then girlfriend (whose name I’ve forgotten now, so I’ll call her Mary). We spent one day at the Franklin Institute, which I have many fond memories of because I took numerous summer math and science classes there as a child. The 6 of us were waiting in line outside the Planetarium for the next show, when a staff person beckoned us to follow him to wait at another entrance, to go in as soon as they opened the doors. Essentially we were jumping the line. Mary was really uncomfortable with this, and asked me, rather sarcastically I might add, “ Are your kids used to being treated like royalty?” I was flabbergasted. It was one of those moments when you are totally caught off guard, and don’t think of something really appropriate to say until it’s too late. I mumbled something like, “no, they aren’t”, when what I should have said was,” you haven’t got a clue, have you?” We were given permission to jump the line, so that we could get to the worst seats in the house, the ones in the last row where they had a space for a wheelchair, so that we could all sit together before someone else took them. I had one spot in the whole theater that I could sit, and the staff was good enough to be sure I could get to it first. This was in 1984, 6 years before the ADA. I would like to think that Mary would be wiser now, but I have no way of knowing. I do know though, that in places where seats are not assigned, a lot of people still react like this when they see me being allowed in first. They are envious, and annoyed, and wish they could get in first, without realizing that they might not like the only seating choices I have.

In movie theaters, unless they are newer ones built with stadium seating and an eye for the needs of PWD, it is still often the case that the worst seats in the theater – in the back, off to the side, are the ones set aside for wheelchairs. (true in hotels too, the rooms reserved for handicapped guests are the ones without a view, near the noisy ice machine etc., but that’s another story for another day) Most of the time these seats are fine, perhaps not the sweet spot, but good enough – you can see well, and hear well.

Recently I went to a movie, Girl with a Dragon Tattoo, alone. The theater is an old one, with a long gradually sloped seating area, for about 350 people, and 2 access walkways off-center down the length of the theater. In the center section, between the 2 walkways there are rows of about 12 seats, and on the right and left sides about 3 - 4 seats. For wheelchairs, they took out the back row of the right side. Not ideal, and not where I’d chose to sit if I could! The theater wasn’t full, but some women (one had some difficulty walking) sat in the last row of the center section. I figured I wouldn’t annoy anyone if I sat in the walkway that was just behind them. Then, even though I was way in the back, I’d at least be in the center and on flat carpeted ground. (That’s another problem with those side seats, the ground slopes down, and the floor is slick, so my chair skids forward and my knees press against the seat in front. My chair doesn’t tilt back, so I have to tilt my head a bit, which isn’t horrible because the slope is so gradual, but I’d rather not.)

The movie starts, and an exit emergency light stays on right above my head! It was bad enough that the women in front of me moved up a row, and I went over to my designated spot after all. Great movie, but I’m not crazy about that theater.

The newer stadium seating movie theaters are better for wheelchairs, as a rule, though that was not the case when they were first built. The very first stadium seating theaters put wheelchair seating in the very front row, which was not well received at all. It’s like the sports stadiums, if you are going to put the wheelchair seating in the middle, and not have ramps too steep to get to them (the ADA does have guidelines on that) then a deeper hole in the ground is needed when you build the theater, and that costs more money. So, the theater builders cut corners and didn’t bother to dig the holes, and put the wheelchair areas up front.

There was one of those earlier theaters built near where I lived in Maryland, and our Access committee had a tour one day. I ended up concluding that I would only go there if the movie I wanted to see was in 4 specific rooms and not the others. Those 4 were wonderful because they were larger theaters with the wheelchair area further back – one even had a balcony!, but the others were too close to the screen. I believe either the lawsuits were decided in favor of the rights of people with disabilities, or the publicity was enough to change the practices of the theater companies, but either way the newest theaters seem to be much better as a whole.

Unfortunately, San Diego Opera does not perform in a new facility. Seating 2967 people (see http://www.sandiegotheatres.org/eventstickets/seatingchart.cfm), it was built in 1964 and renovated in 1995. I can only assume it felt it was complying with the ADA at the time. I’m not so sure it is now though, and have been considering filing a complaint with the Justice Department, at least to get them to evaluate it. I won’t file a law suit seeking money, I believe only in the type of complaint that gets changes made.

We’ve had seasons’ tickets for 7 years, getting what were supposedly the best wheelchair seats in the house. These were in the last row on the furthest end of the orchestra section. Seats V 57, 59. There is no central access aisle, everyone enters from left or right. Our seats were in the 22nd row, in a row that was 118 seats wide. You couldn’t see the stage well without binoculars. And acoustics were ok, not great. But these seats were the same price as those in the front row center, or the 10th row center. So we assumed it was the best we could do. One of the reasons for getting seasons’ tickets is that you have a chance to upgrade your seat location as better seats become available, but that perk means nothing to us, because we already had the best we could get, or rather that I could get. Jim could have sat alone in a much better seat. There were other wheelchair seats as well, in the last row of the dress circle, and the last row of the mezzanine, lower price categories, and certainly no closer to the stage.

So, after 2 or 3 years of paying full price, I complained. I said that our seats weren’t any better than the row behind us, which cost half as much. I said that if they wanted to keep our business they should let us get the tickets for the same price as that row, and they agreed. For the last few years then we’ve gotten the tickets at this discount.

This year, the subscription renewal pricing has changed. They split the dress circle and mezzanine sections into 2, so the front section costs more than the back (where the wheelchair seats are), and even more significantly – they have created an Orch – 2 area right around where we’ve been seated all this time that costs less than half of the regular orchestra, and is now priced lower than the dress circle row behind it! Let’s put some dollars on this. Price per seat for 3 operas a year, on Saturdays.
Orch – 1 $660 per person
Orch – 2 $297 per person
Dress C – 3 (area behind Orch 2) $330 per person

Now, $33 is not really a significant amount, but what IS significant, if you assume that prices of tickets reflect quality of seating, is that where we have been seated is rated lower than 7 other seating areas, and is only better than seats in the uppermost balcony in the back. The accessible seats in the back row of the DC and MZ cost more now – at $435.

I am not trying to spend more money, what I want is to get decent seats with the best acoustics and visuals. I’m a visual person, and there isn’t a single seat in that house of 2967 seats that I can get where I don’t need binoculars to see. And Jim is auditory, and he would like a chance to find out what the best sound the house can give is. I’m encouraging him to go on his own sometime, and leave me home.

I really do wonder if it satisfies the ADA that there is no wheelchair seating in the top 4 price categories, and that the best they can offer is the back row in a house of almost 3000. When they renovated in 1995 they should have really looked at their seating to figure out which seats were providing the best sound and sight lines, which is what I assume happened this year, and made sure there was accessible seating in all sections. It is an old building, I know. And renovating it to provide better seating would cost money that the city doesn’t have (is this city owned?), I know that too. The building was designed with absolutely no thought to access, and when it was renovated wheelchair seating was barely addressed as well. The way the seats are set with long rows of over 100 seats makes it impossible to put any wheelchairs in the center without taking out at least one if not 2 rows. And all the other rows in other sections currently have steps to access. But it is not impossible to make changes! And I bet those changes would be an improvement for all. It’s like curb cuts – just because they were for wheelchairs initially, doesn’t mean a lot of other people can’t enjoy them – bikes, strollers, people pushing carts.

There was a public assembly room in Howard County, MD where award ceremonies were often held. Towards the end of my day as Chair of the Access Committee, we took on the county to improve that room. The problem was that it was an upside down horseshoe shape, with the county council sitting along the flat side at the top. The center of the room was like a pit, and if you were addressing the council, you had to descend a number of steps to get to the podium. Seating was all around, stadium style, with seats at each step level. People with disabilities were stuck on the top level. If they wanted to address the council, the mic had to be brought up to them. If awards were given, instead of the council greeting everyone at the bottom, they had to come up the steps to them. It worked, but was not inclusive. It probably counted as a reasonable accommodation according to the ADA, but it put PWD on the ring of the room, the fringe of the party. So, Howard County at first grudgingly, but eventually willingly, drew up some designs to fix it. The winning design, was in most ways the simplest – they raised the floor and made it flat. And guess what? It was a hit, and not just with PWD. The chairs were not bolted down, so the room was more fluid and could be used in a lot of different ways. And when people addressed the council, they didn’t feel like that the council was looking down at them from some high court. The council liked it too. Overall it became a more friendly place.

I have no doubt in my mind that a renovation should be done at the Civic Center to improve seating for all. Having to wind your way down those long rows of seats is a nuisance. For PWD it is really needed. I’ve been told that the acoustics aren’t great, but I don’t think I’m in any position to give an opinion on that one. I can’t imagine that any changes will be made soon. In the meantime though, I am planning one of these days to write a letter of complaint to both the San Diego Opera, and the Civic Center (or City if they are the ones who own it, I’ll have to find out). And the chances of my getting tickets to an opera in San Diego again are rather low. I’d rather take my chances on one opera in San Francisco next year! I have no idea about their seating at this time, but I’d get a weekend in SF as well!

Best seats – most of Orchestra, front center rows of Dress Circle and Mezzanine, side balconies on the lower balcony

Next best – upper side balcony, back center rows of Dress Circle and Mezzanine – wheelchair seats are here in the very last row.

Coming down in price, next best – front center rows of Upper Balcony, wings of Dress Circle and Mezzanine – may have some wheelchair seats here too, in the back row, not sure.

And next is where we’ve been seated – back corners of orchestra

Last – top balcony back and wings and there are NO wheelchair seats there! (there may be an ADA violation here too, if someone called in asking for the cheapest seats, to be told they had to get ones that cost 3 times as much?)

Am I crazy to be annoyed by this, anyone else see why I feel miffed and invalidated? The more I think about it, the more annoyed I get. I was never crazy about the seats we had, but I trusted that we had ones that were considered reasonable by acoustic standards at least. I’m not asking for the BEST seating, just fair seating for the price I’m willing to pay. If all I’m willing to pay is $30 a ticket and all I can get is the upper balcony, back corner, so be it. Getting the price break eased the pain for a while. The curious thing, is that we must be in the computer as “special pricing, don’t touch” because when the renewal came back, it asked for the $330 of the section behind us, not the $297 of the newly created section. Amazing.

Tomorrow will be another interesting experience, not for me, but for someone attending a play with me. We’re going to the Old Globe, a nice and much smaller venue. Again the seating is the back row, and off to the side, but my opinion is that there isn’t a bad seat in the house there, so I don’t mind.

I’m sure that my attitude is shaped in part, because it’s really all I’m used to as an adult. As a child, my family attended shows, but we didn’t spend a lot of money on them. When I was a teenager, and even in college if I went somewhere, someone would carry me to a seat in the middle, and I’d enjoy the show out of my wheelchair, but I didn’t go to many. I weighed only about 110 pounds then. Now, not only do I weigh more, but the usual person with me has aged as well, and shouldn’t be carrying even 100 pounds! So, I stay in my chair. With the ADA, this is also easier to do. I’ve seen more performances in the last 10 years than the rest of my life altogether I think – a result of having kids grown up, more time, and a different husband.

I made the mistake of asking my friend, who is going to the play with me, where she usually sits, and she said – “front row, center”. Well, she won’t get that this time. She knows this and is ok about it intellectually. But how will that feel for her? To pay the same $70 for a ticket, and instead of front row, center, she now is sitting in back row, side – because of a wheelchair? How is this going to feel for any adult who finds themselves suddenly with a disability and unable to take steps? I’m guessing my friend won’t feel really bad, partly because the seats really aren’t bad (the gap between these seats at the Old Globe are nothing like the gap between front row and back row at the Civic Theater) and because she wanted my company. I’m grateful that this is true. People who want to be with you, wheelchair and all, can brush off a seating arrangement change for the sake of friendship. They might not have the same reaction if they had to give it up permanently though, I suspect. Like most of us using wheelchairs, we choose not to fight it, and usually just avoid going to venues that are unpleasant.

Unfortunately that creates a feedback loop the makes it hard for changes to ever happen. Avoiding a venue, means fewer patrons in wheelchairs, which makes the venue think they are doing a reasonable job because they have no complaints. Which is why I am thinking of writing letters, and filing a formal complaint.

There is a phrase that people with disabilities sometimes use for describing people without disabilities – “the temporarily able-bodied”. I wonder, if more people thought about themselves or their mothers as one day needing those handicapped access parking spots, or wheelchair seats, or a chance to get in early to a movie theater – would they be more understanding and design places more friendly?

And now, I am exhausted. I’ve thought about this topic for weeks now, and I’m sure I’m still forgetting something. I wanted to try to write all my thoughts down. If nothing else, it shows how complex this issue is, how big a part of going out on the town the topic is, and how much experience I’ve had.

Changing Tubing

Once a month, I change my catheter and all my tubing. It takes about 20 minutes and isn’t hard to do. I usually do it before and after taking a shower, so instead of taking 1 hour to shower and dress, it takes a bit longer. No big deal, but I do have to pick the right day, so that I have enough time to do it all without rushing.

Some people have to change tubing once a week, some can go for months, it’s very individual. The basic idea is to change your tubing often enough to avoid serious bladder infections, or worse - kidney infections. I think I’m doing pretty well to only have to do this once a month.

If you use a catheter, either conventionally or suprapubic, you are bound to have infections. I’d even say I probably have a low level infection most of the time. What’s important is not to get seriously bad ones – ones that give you a fever, or make your urine gunky, or cause you to have dysreflexia (or pain), or that cause your bladder to bleed. I get that kind of infection about once a year on average, which is low. Then, my course of treatment is first to change all the tubing! Then drink as much water as I can stand to flood my bladder, and if that doesn’t clear it up – to take a course of Cipro, which is usually 10 days. My urologist gave me a prescription for Cipro for just this kind of situation. He trusts me to self medicate for what feels like the type of infection I’ve seen hundreds of times in my life. He also knows that if this doesn’t clear up the problem, then I’ll be in his office without delay. The problem is that if I took a urine sample to him when I first thought I had an infection, it could be a week before they had the culture and sensitivity results back, and if I waited for that – I’d be miserable for a week. The usual procedure when you bring in a sample is to get some antibiotic to get started, and then change it later if the culture and sensitivity says it’s the wrong one.

The equipment I use – a foley catheter (in a large size since I use it suprapubicly), a reusable legbag with cloth straps (that I attach to my calf), an extension tubing to help connect the 2, an overnight urine bag that holds a bit more and that can hang from my chair at night. I need scissors to cut the tubing down to the right size and to open some of the packaging. And I need 2 syringes, not with needles, but just the plastic blunt ended type.

After the same catheter has been in me for a while, often a small amount of sediment will start to collect on the inside of the clear plastic extension tubing. How much sediment depends on what I’ve been eating, with orange juice and sugar sodas creating a LOT of sediment. So, if I don’t have any infection concerns, this is a good reminder that it’s time to change the tubing.

Today was a “change tubing” day, which is why I thought to write about it. It’s a simple procedure, not much of an event really, but for one thing.

1 – Decision is made that I’ve got to change tubing, for me this time it was last Wednesday. So, I look at my calendar, to pick a day that I’m going to take a shower (looked like Friday and Sunday this week, but Friday I had to be up and dressed by 9:30, so I wouldn’t be able to sleep past 8 and it was passed over). Sunday is the day, as it often is.

2 – I put a clean washcloth down on my counter top, and discard the old used one. Then I collect all the stuff together, get catheter, legbag, extension, syringes, overnight bag all out of their packaging. I use Jim’s sink as a collection bin for all the crap. It fills a trash bag eventually! I trim the extension tubing to the right length, attach it to the catheter on one end and the legbag on the other. I get one syringe out, keeping it empty. And the other syringe is full of 10 cc of sterile water, which I empty half out of. My bladder can’t tolerate a balloon in it that’s large enough to hold 10 cc of water, 5 cc is enough to do the job.

3 – This is when I take out the old catheter. Foley catheters are constructed so that there’s a tiny tube inside the catheter that water can pass through and be pushed up into a balloon that sits inside your bladder. The full balloon is what keeps the catheter from being able to come out. If you attach an empty syringe to the end of the valve of the catheter, the opposite happens, the water in the catheter will go back into the syringe, and the catheter slips out. I put Kleenex at the opening in my stomach as I do this, in case a bit of urine leaks out, or mucus.

Suprapubic catheter means that I have a hole punched in my stomach about 2 inches below the top of my pubic hairline. A catheter going through this hole goes directly to my bladder, doesn’t go through any intestines or cause any other trouble. It’s probably only a couple of inches, mostly through fat, but I’ve never measured it. Getting a suprapubic catheter was one of the best decisions I ever made. I had been having more and more trouble intermittent cathing myself, and had gotten to where I was using a foley catheter in the more conventional arrangement, but that had several annoying features. The suprapubic location is MUCH easier to clean, to see and change tubing, and makes a sex life a lot easier.

4 – And then I drink a full glass of water! This is important, because the last thing I want is to put in a new catheter, not see any urine coming out and not know if it’s working. Once in a while, believe it or not, a catheter is bad – that it doesn’t really have a good channel for urine to flow through, or in other words – it’s blocked because it was made badly.

5 – Now, time for that shower! Usually when I’m taking a shower, I drape my catheter/tubing/legbag over the arm of the shower seat and let it hang. But on these “change tubing” days, I am free of plastic attached to me! I love that feeling. Every month it’s as if I’ve forgotten what that feels like, to not have tubes attached I mean. I know that for years I intermittent cathed, and I didn’t have a catheter in me all the time, but each month as I take that shower it’s as if it’s the first time in such a long time, and it feels like magic.

6- But I can’t take a long shower, because the longer I go without the catheter the greater the chance of 2 problems occurring. If I go too long, and my bladder gets too much urine on it, it’s spasm and I’ll leak, and then that feeling of being so clean disappears immediately. And as my body goes without a catheter through the punched bladder opening, that opening starts to heal. A blood clot will form. Theoretically the ‘wound’ of a suprapubic catheter is totally reversible. If I pulled the catheter out for good, the punched spot of the bladder and my stomach tissues would heal over, sort of like pierced ears I suppose. Though I have a hole in one ear that I put an earring in about every 5 years, and it has never closed over, so I don’t know if the analogy works.

7 – Out of the shower, insert a new catheter, insert 5 cc of water into the balloon in the catheter and I’m almost back in business. I usually wrap a Kleenex around the joint of the legbag, because when it is new it often leaks, and I tape this down with surgical tape. Lastly I put Neosporin around my hole in my stomach (is this called a stoma? I don’t know) because no matter how clean I seem to do this, that first day with new tubing usually means some mucus dislodged and possible surface infection.

I’m sure this sounds complicated, and there is a lot of detail. And perhaps it sounds a bit disgusting, but overall this is a pretty clean procedure, well, you have to deal with some urine, but it isn’t so bad. It’s the kind of stuff you get used to if you have to. So, what is the one thing that made me want to write?

I love the feeling after a shower. Taking a shower is a lot of work for me because of the extra transfers. I don’t sweat much, and my hair doesn’t really do well with washing daily anyway, so I can manage with showers every other day. Sometimes if I’m not seeing other people on a ‘shower day’ I’ll skip and go 3 days between showers. It’s a balancing act – the work to take a shower on one side, the wonderful feeling after the shower on the other. And on the days I change my tubing the showers are even better. But, ironically those are the days that the good feeling is the most fleeting.

A new catheter, with a new full balloon is mighty irritating to the bladder. And my body reacts with autonomic dysreflexia (AD), which causes my blood pressure to go up, and makes me start sweating above the level of injury - a cold clammy kind of sweat. AD is a reaction by the backup system of your nervous system, when the spinal cord is cut, and normal sensations cannot be carried to the brain in the usual way. The worst AD I ever had was while giving birth to David, but I can get it with full bladder or bowels, broken bones, burns, gas or nuts passing through my digestive system. And I get it in a very mild form, when I’m feeling my cleanest, after changing my tubing, and it irritates me every time. It’s one of those ironies I have never really gotten used to.

A risk taken

I took a risk a few days ago. OK, not a big risk, and most people wouldn’t think of it as a risk at all I’m sure. But for me, it felt emotionally risky, and gave me butterflies in my stomach.

I became a member of my high school graduating class’ facebook page.

My parents did not feel the Philadelphia public schools were any good, so they sent us to private schools – Quaker schools to start with. From 7th to 12th grades I attended a small private girls’ school in Chestnut Hill. Our graduating class had around 50 girls, so you did know everyone at least by name. Of course you knew some kids better than others, because some subjects (like math and science) were divided by ability, and students tended to clump together. Cliques of friends developed that were often hard to break into or apart. Many students had been at the same school since kindergarten or at least elementary school, so they knew each other well.

I started in 7th grade, and didn’t want to attend there in the first place. I had liked the last school I was in, and my parents pushed me into the switch. It probably influenced how well I adjusted, and though I made friends I didn’t feel like I fit in well there. In 10th grade things got better. 2 new batches of kids came in that year – some were from the inner city in Philadelphia who took the train home like I did. The others came from another smaller girls’ school that had closed the year before. Class work was more interesting then too, higher level math and science. And so by 10th grade I really did like the school.

But, 10th grade, in February, was the year I was shot. And in the end, I missed all of the rest of that year of school. My mother pushed hard for me to return to the same school for 11th grade, and the school was really very accommodating about it – being an all girls’ school they were committed to helping people achieve who might not ordinarily get a chance. Classrooms were in a split level building with no elevator, and 2 men on the grounds crew would meet me between classes to get me up the stairs from one level to the other when I needed a hand. They put me in a homeroom on the lower level, so that in the morning my father got me up the 4 steps to that classroom. I’m sure they arranged my schedule so that I had as few moves up and down steps as possible. The middle level was for the library, lunchroom, artroom and offices, and there was one meeting room that once in a while they would put my English classes so that I didn’t have to get moved up stairs.

I had been in an accelerated math class, taking Algebra II in 10th grade, and an earlier track of science as well, so that I was taking Chemistry in 10th grade when typically students took Biology first.

The school and my parents decided that I could return to my class level and not have to repeat 10th grade if I could finish up my English and History requirements that summer. The Spanish they would excuse, since between the Latin and Spanish I had taken I had satisfied all the state language requirements. Math and Science, I was going to have to repeat. That was a mistake, but at the time, who knew? Perhaps, because of labs it was the right decision for Chemistry, but the math I could have taught myself 3 times over, and still been top of the class. In the end it meant I didn’t have Calculus in high school, which really hurt me later in college. But, water under the bridge and all that….

Where I’m headed with all this, is that it was really hard to go back to the same school. It was really good that I did, don’t misunderstand me. But it was NOT easy. I was never outgoing, never popular. I didn’t do the kinds of things teenage girls tend to do. I didn’t chatter, or join drama, or chase boys. I wasn’t the kind of girl that others wanted to invite along on an outing. Not that I didn’t do some of those, with the right friends. But I wasn’t at all outgoing. And after I came back from the hospital, I did all of those even less. I invited a neighborhood boy to be my date at the Junior Prom, so that he could meet other girls, telling him that I knew he wasn’t interested in me. I didn’t bother going to the Senior Prom.

But it WAS good for me to go back to the same school. The meaning in my life, was that I was still the same inside, and could keep going despite my disability. The message for others was equally profound, that someone else can continue despite adversity. It was healing for many of us, students and teachers alike.

But for all these years, since 1975, I’ve avoided contact with my old school. For me, those years are more pain than pleasure. I still harbor some feelings that I attended there not by my choice, so they should appeal to my mother for donations not me. And so much of the school correspondence is asking for money. I remember not liking many of the girls there, but honestly, how would a teenage girl like other teenagers when she felt excluded? Or if not excluded, at least apart?

I’ve kept in contact with just a few of my old classmates – one who lives now in PA, and another who coincidentally lives here in San Diego. While living in MD, my friend in PA invited me to a dinner where another classmate who lives in Philadelphia was there, and I was happy to see her, so that made 3 to keep in touch with. I have since had a falling out with the woman in San Diego, we not longer talk to each other, which even 4 years later is causing me a lot of pain, but not under my control.

A few months ago, one of my classmates invited me to be her friend on facebook, and I accepted. She was one of those I took the train with. And I accepted her offer to be friends, and we exchanged emails. It didn’t cause a cascade of long letters and introspection. It was good, actually. I could handle it.

This week, as facebook will do, facebook suggested I look at the school “class of 1975” page, which someone had set up just in January. To my surprise 22 people were members! This includes a couple that didn’t actually graduate, but did attend high school there, so if you count all those people too the pool of candidates is closer to 60 than 50, but 22 is still a pretty high percentage. And they were talking about a recent reunion and an award for one of our classmates, and the photos look so happy. Girls that never would have been friends in 1975 were together, posting comments on how they had had a good time. And perhaps for the first time, I wished I were part of the group. So, I added my name as a member. There’s no escaping it really, I am a member, it’s only that by adding my name to the group I’m acknowledging it.

To be able to attend a reunion though, I have to get past a few things. The first one I’ve been working on, recognizing that that was a painful time in my life, and not seeing all those women through the lens of what happened to me. The other, is being able to accept that I didn’t become what they expected of me.

I have been anxious every time I’ve signed on facebook ever since I joined that group – worrying that someone will ask me to be a friend of theirs, or communicate with me directly, scared that no one will! I fear that the old “leave her alone” attitude will prevail. They were glad I was there, a reminder that the world heals even when hurt badly, but they didn’t approach me much, include me much either. I put them in a terrible “damned if they do, damned if they don’t” position, don’t I?! At the same time, I find myself drawn to that group, seeing what I can see of someone else’s profile and photos, even if we aren’t friends. And eventually, I’ll invite some to be my friends, I’m sure. I find I’m curious about how they are doing, which surprises me.

I’ve also reread all the comments people wrote in my yearbook. Being such a small school, each senior had their own page that they could design however they chose. This meant we also had a lot of space to write in if we chose to.

Here are some of the comments people wrote in my yearbook –and I recognize that they are words from 17-18 year olds, who are feeling particularly sentimental at the time, but the fact that so many of them say similar things, is meaningful:

“I’m quickly running out of things to say – but one thing I really have to say is that your strength in personality will always make others around you respect you and your opinions. Best wishes always”

“It’s hard for me to know how to sign this yearbook, it’s meant so much for me to know you. Aside from sentimentality, thanks for the geometry aid and everything. Good luck next year and always.”

“No, chemistry books can’t bring luck but they give one a sense of confidence. Time passes by so quickly. Do you feel as old, as I do? Have a super time at MIT next year – they need you”

“I really think that you’re one of the most outstanding people I’ve ever met. I can’t begin to tell you how much I admire you. I really don’t mean to be corny, but that’s how I feel. Lots of luck and keep the faith”

“We really got to be good friends in 7th grade when you first came. Unfortunately we chose separate roads academically and haven’t been in a lot of classes together, but we’ve still had fun. I’m so glad you came back to XXXX and I admire you for your courage and confidence. I know you’ll go far”

“Wow, you are one hell of a person! I can’t believe how far you’ve gotten with SO much will. Donna, I wish you the best of luck always”

“I’m SO glad you came back. You’ve given our class so much – I’ve learned a lot from knowing you, although I don’t know you as well as I would have liked to. You’re such a neat person Donna – I had fun in art with you – you’ve got talent! The best of luck and happiness be with you always – You certainly deserve it! Thanks for coming back. I’m going to miss you.”

“I never really did get to know you that well but have always respected and admired you from a distance. Take care and I know you have a fabulous future ahead”

“I’m glad you decided to rejoin our class – we need someone with your courage and someone whom we can all look up to and respect”

“Donna - quiet, yet always there – ready to say hi and pass the time of day. Truly we had a good year”

“I wish I could have gotten to know you better….”

“I really wish we had gotten to know each other better….”

“There is so much that I need to say but I just don’t know how to express myself. I admire you so much it’s incredible. I’m super glad that you pulled the girls into 2nd place in the yo-yo contest. I’ll never forget how you do a math problem. Your mind skips 8 steps. Wild! Look, Donna, take super care of yourself.”

“I’ll always remember you as being a genius. I’m expecting great things from you at MIT. You’re a great person and I’m glad we were in the same class of 1975 Good luck always”

My closest friends I did not quote. Some said things that were more personal and clearly heartfelt, as if you could tell they were crying. Others didn’t say much at all, knowing that we weren’t saying goodbye, we’d see each other the next week and never lose touch.

A couple of teachers said interesting things too:

From the art teacher – “For Donna, who daydreamed and worked, and made my year a lot richer for being in the studio”

From a science teacher – “Dear Donna, I expect to be hearing great things from you in the future. The best of everything. Affectionately,”

And from an English teacher – “To Donna: because she sees the joke….”

Our girls’ school had a brother school across the street, and in the last 2 years of school we had a lot of classes together, not to mention social events. We got to know the boys pretty well. So, I also got one of their yearbooks, and asked many of the seniors to sign their pages. Most of the boys’ comments were along the lines of – “have a great summer, enjoy MIT” line. In general the boys were rather succinct. But 2 stood out:

“In ten years time when your (sic) done all schooling and go out into the “stream of the world” I expect to hear of great things that you’ve accomplished”

“Thanks for being the silent wonder in all those classes we were in together.”


Maybe 35 years is long enough to heal. I hope so. I’m certainly trying now to heal. I didn’t become a science wizard. My name isn’t in the news. I’m still generally speaking, the quiet one in the room, though much less so than before, and it does depend on the setting.

Aside from my family, these women are the only ones who knew me both pre and post injury, and who remember personally what happened that year. For me, it was a life-changing year, but even for them it was traumatic. Am I really ready to hear about it from their side? And will I disappoint them when they know I haven’t turned into some wizard - more to the point, can I escape the feeling of being a failure myself?

All, of this stuff, is tied into my disability package. If I try to calculate the effect of becoming a paraplegic, I have to go way back. And though I may be happy now, feel in good shape, have plenty of friends – if I look backwards, so often I find there are questions about how things might have been different, and it started from the very first day.