buying a new wheelchair

December 29, 2009, Step 1

On that date, I stopped by my physiatrist's office to ask for a referral to the PT dept for a wheelchair evaluation. I was over at Sharp Rehab that day to get my weight. I could have called the office for this referral, for it was something his office assistant would handle, no need for an appointment - not yet, but I was there anyway. The reason I go to Sharp for my weight - it's hard to be weighed on most scales when you can't stand. At Sharp they have a platform scale, large enough for a wheelchair to sit on. So, if you know the weight of your chair empty, you can take the weight with you in the chair and subtract the empty chair. I weighed in at 169 pounds, time to count calories and lose weight, again.

About 2 years ago, I was part of a weight management class for women with disabilities. I tried counting calories and watching carb consumption and dropped from 172 pounds to 155. I knew I had gained weight back, but so much? It was almost the new year, so I gave myself a new year's resolution. Which I will admit that today, Jan 28, 2010, I haven't really done yet. But I might still.

So on Dec 29, I made an appointment to see my physiatrist, and asked for the PT referral. The PT department called me back around a week later and I made that appointment for Tuesday Jan 26, almost a month later.

Tuesday Jan 12 step 2

Met with my physiatrist - a general checkup of sorts. Mostly talked about my disability related health issues - vertigo and wrist problems, irritable bowel and diverticulosis. I hadn't seen him in 2 years, and typically see him when I have some health issue that is so clearly related to my disability, AND is something my internist cannot handle, which really isn't much. The last time I was there? I think I was shopping for a new cushion. This time, a new chair.

It isn't that I don't like my physiatrist, it's just that I really wish I could handle everything from sore throats to pressure sores with one doctor and my internist is better able to handle disability issues as well as general ones, whereas my physiatrist is much more just a disability doc. So, I see them both, but one a little more frequently than the other.

My appointment that day was more for form's sake than a really helpful appointment. In the end he'll be the one that writes the prescription for the new wheelchair, so it is appropriate for him to see me at this time. I don't mind going really.

January 26, Step 3

Wheelchair Clinic at Sharp Rehab, with a PT and a rep from Mobility Solutions, a seller of wheelchairs.

This was a useful appointment, the rep had a lot of information for me. My current wheelchair is a Quickie 2, the workhorse of the Quickie brand, and it seems to be the standard in the folding chairs for active people. My chair is 6 years old, and what they sell now isn't much different, because it's a good solid product. 2 other companies make similar chairs - Invacare makes the ProSpin, and TiLite makes the aero-x.

So, now, I need to do my own research - evaluate the 3 brands, figure out the subtle differences. All 3 chairs can be make to my measurements, have removable foot pedals and arms. I can reduce the weight by getting a lighter design of arm, by getting spoke wheels instead of mag wheels, and getting rid of the frog's legs. I'll have to think about that one. But cutting off 4 pounds would be really nice. I'll change the brakes so I get fewer bruises when I transfer, and probably get a new cushion.

The rep also told me that if I move the wheels forward even 1/2 or a full inch, it would reduce the strain on my shoulders and wrists pushing. That would be so nice.

But none of these chairs really has a good solution for the back of my chair. I want a folding rigid back! It doesn't exist. I want something rigid to help my posture, and reduce my vertigo. But something that folds like a regular upholstery back, or that is easy to pull off, without hurting my wrist. I was told there are some after market back solutions, so I guess I'm not the only one with this problem.

Anyway, I have to do more research. Perhaps I'll get to it before our vacation, perhaps not.

Then the next step, is to pick which chairs interest me, and which cushions I might like, and ask the rep to show them to me. We'll have to do the measurements, and there's a pressure mapping machine at Sharp PT to help figure out which cushion is the best choice, which will give the most even pressure on my bottom, and ischials. It'll probably happen towards the end of March.

Anyone with experience with the Invacare or TiLite chairs?

My pessimistic personality

All my transports for the coming vacation are now booked. The car I will use around Buenos Aires is going to be cramped when it is full with a driver, 2 passengers, 4 suitcases and a wheelchair, but it'll work. The car in Iguazu is likely to be hard to get into because the seat is probably 5 inches higher than my wheelchair seat, but with help, I'll manage. Maybe the car can park next to a high curb? We'll see.

So, today I've moved on to thinking about what I'll be doing in Iguazu (google Iguazu falls, really beautiful scenery) and at the ports we dock at on the cruise. But, rather than focusing on the adventure, I've been preparing myself for disappointment. It's so pessimistic of me. My negativity in general will probably cost me 10 years off my life. So, perhaps this post isn't about disability, but more about me, or perhaps a combination - how I handle my disability, given my personality?

Something like that. But I think, that's one of the points I would like to make to everyone - that if you look at someone with a disability, and feel sorry for them, or maybe less strongly - that you wonder how they manage - you are looking at them through the lens of your own life and personality. And honestly I believe that most people tend to see our differences more than our similarities, so what you see are the hardships, or your perception of hardships, which usually don't match what they really are. And part of that is because we gimps don't generally talk about a lot of them, and they are hidden. (a story for another day)

All the same, psychological arguments aside, I am still preparing myself for some disappointment. Unlike in the US, where a cruise ship is bound by the ADA to offer some accessible excursions, there are no such laws in other countries. And even if a nature walk, or town tour, or lecture or cooking demonstration... is accessible, usually the transportation to get there, isn't. We found on our Panama Canal cruise, which stopped in 3 or 4 places in Mexico, and Costa Rica, and Aruba, that our best plan was to make our own tours. If the dock was close enough to the town, we'd disembark and walk around. If not, we hired a taxi either for a short ride, and sometimes for the whole day. Puntarenas, Costa Rica was beautiful and we couldn't have had a better driver for a personal tour. Aruba and Puerto Vallarta were easy to walk around. Acapulco was a short ride into town. Or do I have Puerto Vallarta and Acapulco backwards? Doesn't matter. One was one way, one was the other.

But, until you disembark, you really don't know how good a stop it's going to be. You might know that other people walk into town, but you don't know about curbcuts or glass on the sidewalk, or traffic where there aren't curb cuts. You might know that taxis are right at the end of the pier, but you don't know if you'll be able to get in them, or if the driver will speak any English, or if they'll take you somewhere and then leave you (we've heard stories!). In Puntarenas we had an accessible mini van taxi, where I could stay in my wheelchair - imagine that! The driver spoke very good English, and knew great places to visit, including one of the best lunches we had on the cruise. You just don't know, and sometimes it's wonderful and sometimes things do not go well.

In Juneau, Alaska we had one of our worst experiences with taxis. In retrospect, we should have booked the helicopter tour through the cruise ship, because they have accessible buses at their disposal in Alaska. And actually we did at first, but we discovered that it was at least $100 more with them, than if you book privately. We figured we would just hop a cab out to the helicopter pad. I called ahead and arranged for an accessible taxi for the right day. Juneau had one accessible taxi, and I had the foresight to check this out ahead of time.

Juneau itself is easy walking around the cruise ship dock. People who want transportation after they disembark are usually headed out to the glaciers or a rainforest or national park. They might not sign up for a tour through the ship, but they often choose from a multitude of options after they get ashore. And most of these run with small or full size buses, which of course I cannot get into. There are no sedan style taxis in town. There are minivans for larger groups, and I believe some busses act as city shuttles.

So, that day we got off the ship, and went to the proper taxi stand for the radio call-in that we were ready for the one accessible taxi. And, it didn't show. The driver had decided to take the day off, and had turned off his radio. He didn't recognize a previous reservation, or perhaps hadn't been told, who knows. Anyway, about 2 hours later, the taxi company finally found a semi-retired woman who drove something like a 1985 station wagon, that was outfitted as a taxi, to take us to and from the helicopter pad. She couldn't have been nicer, and everything worked out well in the end. Wasted 2 hours waiting around, and missed the original helicopter appointment. But the helicopter company people were really accommodating and laid back, even had a special motorized lift for helping people who can't stand to board.

It was a good day, though, because the helicopter ride was amazing. It was the high point of the whole vacation, and I will recommend it to anyone, disabled or not, as perhaps the most beautiful scenery I've ever seen. I don't exactly rank my vacations, but seriously, this one had to be up there. People can tell you the crevasses in the ice of the glaciers is Windex blue, but no pictures we took really captured it. And we have some great photos!

My point - I know there will be difficulties, and this will be despite my best attempts to get things set up. I also know that I'll have a great vacation even if I don't see everything I hope to.

Iguazu Falls is going to be a challenge. We are limited to the Argentine side, because we don't have a Brazilian visa. It was more trouble than a 3 hour visit there was worth. No helicopter this time, because they only fly from Brazil, and there's a lot of controversy about them anyway. There are hours' worth of walking trails in the park, and river cruises that go under the falls, all would be interesting. But I can't figure out how accessible any of these are from here. I've tried, and now given up. We'll just have to go and see.

Similar problems with the places the cruise ship docks at. The details aren't important, the gist is the same. Chances are good that most of what I want to see, I'll get to somehow. There will be a few things I can't get to, that may even cause me some pain. I'll be really disappointed if I don't get to see any penguins, for example. Jim will take off one day on some excursion that I can't do - now planned for Ushuaia, where he'll take a catamaran tour around the coast. I think he feels guilty when he does this, for he puts himself in my place, and then I suspect he'd feel jealous. But I encourage him to do it, for it doesn't seem fair for him to be limited just because I am. And honestly, I like having a day to myself in the middle of the cruise. Too much togetherness, you know?

Today as I spent a few hours getting all my ducks in a row - asking a neighbor to take care of the outdoor plants, setting up the airport shuttle, canceling papers and water delivery, and making sure we had enough supplies for the cats while we are away - I also started the psychological prep just in case there's some major disappointment. If I expect difficulties, as well as do as much preparing to minimize them, then when the good stuff comes it'll be even better.

This is my nature, and I have a story about a big disappointment that has nothing to do with my disability to prove it. When I was pregnant with David, I had an ultrasound and wouldn't let the doctor tell me the baby's gender, it didn't matter. When I was pregnant again, 2 year's later, I wanted to be told. And when I found out the baby was male, I held the tears back till I was in my car, and then I cried for hours. I don't think I had realized how badly I wanted a girl, but I knew it was enough that I should find out before the baby was born. By the time Stephen arrived, I was ready and happy. It would have been horrible to be crying in the delivery room. (How was this in the days before ultrasounds?) And today, I can't imagine sons I'm more proud of and attached to. Sure, I'll tell my sons to have relationships with women who will be like daughters, and I'll even suggest a few from time to time (not that they listen). I'll remind them that they are to give me granddaughters one day! But they know that I'm more poking fun at myself than really trying to influence them. At least I hope they do.

I like to organize and plan, and I'm good at it, that's a strong part of my personality. I remember my first assignment book in 5th grade and how I loved to write notes in the pages. I am a queen of lists. It's a strength at times, when I can get a complicated vacation with all these extraneous details about accessibility put together, or I can oversee a home remodel and get it done in a reasonable amount of time. And it's a weakness when I'm thinking about what might go wrong, and what I'm missing. Overall, I'll have a good time on this vacation, not necessarily what I had expected, but that's ok. At least, for now, 2 weeks away - I keep reminding myself of this. And tomorrow, cat instructions and beginning to pack.

prep for Argentina

I'm new to this blog thing, as a writer anyway. And it's giving me a greater appreciation for other bloggers whose writing I really enjoy, and who are concise. I have wished they would write every day, and now I can see how much work goes into even the shortest blog.

I have a theme for this blog, but haven't yet got the knack of recognizing a topic that means something to me until it's 3 AM and I can't sleep. And so, this topic came to me last night, with an "of course" reaction. And now I only hope I can reproduce the clarity I felt when I didn't have a computer at hand. I don't want to get into the habit of getting up at night to go write.

In just over 2 weeks, Jim and I are setting off on another adventure. We'll be flying to Buenos Aires, for 5 days in Argentina, and then taking a 2 week round trip cruise to Antarctica, and back in Buenos Aires for another 2 days. I think it's going to be wonderful, exciting and I'm really looking forward to it. But in the meantime, I have to finish preparing.

Most of the preparations are done: cruise, flights and hotels booked. We'll see some friends and a cousin in Buenos Aires. We even have a dinner and tango show reservation. There are a lot of little things left to do, stopping the newspapers, writing cat instructions, giving emergency contact info to family and neighbors, mostly routine stuff. But what's really hanging me up is transportation - more specifically how to get from airport to hotel, and hotel to cruise dock.

I've been having a lot of trouble with this for several reasons, not least of which is my own irritation in having to do it in the first place. And honestly, that feeling stems from the fact that I have to do a lot of work because of my disability, and it doesn't feel fair!

5 years ago I would never have thought I'd like cruising. I had too strong an image of seniors at shuffleboard and crappy all-you-can-eat food. But we wanted to see Alaska, and found that not only was it a decent way to see some kinds of places, but it was also a pleasant way to vacation. Cruising lacks the intensity of land travel, when you might have 3 or 4 days in a city and move on. You won't get to know a town as well as if you stayed there for a week or more. But, if the ports you are going to are small enough towns, you can get a feel for them in a day, and if there's scenery you can only see from a ship, then cruising is cool. Plus, having some at sea days to do nothing but read and watch the water isn't bad either. We've picked ships where the restaurants are decent, and for the most part ignore the entertainment and casinos. Some have had lectures worth attending. Cruising is perfect for Alaska, and we've gone twice, plus we've done the Panama Canal. Antarctica will our 4th cruise.

Surprisingly enough, I've also learned I like being on the ship. I love to be on the top deck when the ship pulls out of dock, and the captain blows the horn. I like the evenings when it's warm and a band is playing by the pool, and you can watch the sun go down. I like sitting on a side deck or in 10-forward (different names on different ships, but essentially all have a bar up high up front) watching the water hit the hull, sipping a glass of wine. I doubt I'd want to be on a ship that didn't dock anywhere, and was at sea the whole trip, but I'm not sure- I like the ship for the ship's sake.

And yet, with all those pluses - small town docks, scenic cruising, relaxing at sea - what makes it possible is the ADA. If a ship docks in the US, it has to have ADA accessible cabins. And the ships do a good job.

When we went to Italy a few years ago, and to Switzerland for our honeymoon in 2004, I spent countless hours finding hotels with accessible rooms. I had a list of 17 questions, with everything from height of toilet and bed, to door width (open space vs size of door) to width of hallway to width of elevator door.

Some cities were relatively easy (hit a good one on the first or second try) - like Milan, Lucerne, Zurich. Some were really difficult - Venice being the worst, Bellagio and Interlaken close behind. In those cities, I would send out a fax or email, with my 17 questions, wait a day or 2 for a response. Often they wouldn't respond, so I'd call to see if they got my letter, and then resend to a specific person. Other times they would respond quickly to say they had to wait till the room was empty and then get a maintenance man to take measurements. 2 days later they'd get back to me either with measurements or a pronouncement that it wouldn't work for me. Often from the measurements I could see it wouldn't work out. So, on to Hotel #2. I never counted the number I tried in any city, but I am sure it was more than 10 in Venice, and after I booked a place I found out that it wouldn't work. We set up a personal care attendant to help with getting me around the city - over bridges, up steps, on and off the vaporetto, and in the process someone asked us where we were staying. He let us know our mistake and steered us someplace better. You get the picture, I look for hotels almost as soon as we start planning our itinerary, as far in advance as possible.

With cruises, a lot of this hotel searching is not there. I only have to figure out where to stay a couple of nights before, and possibly after the cruise. For this next cruise, round trip out of Buenos Aires, I had it easy. We've been to Buenos Aires before, so we are staying at the same hotel as last time for 3 of the 5 nights before the cruise, and for 1 night after. The other 2 nights we are going to Iguazu Falls, and I got lucky with the hotel in the park there on my first try.

Overall, for this vacation I've only spent a little more time with planning than anyone traveling might have to do. Yes, I had to book an accessible cabin, and fill out a short form for the cruise ship. And yes, I did have to request an accessible room for the Hilton in Buenos Aires, and the Sheraton at Iguazu Falls. I routinely inform airlines and restaurants about my wheelchair. But these were simple things, and until this week I didn't have to spend hours sorting out an accessibility problem. There's a big difference between informing places of a special need, and having to find accessible facilities.

Altogether I need 6 taxi rides. Sounds simple right? It should be. Anyone without a wheelchair gets off the plane, collects their luggage, hails a taxi, and is at the hotel in no time. Or maybe they set up a ride with their hotel for pickup, tell the hotel # of people, flight time and they are set.

But it isn't so easy for me, in Argentina. There are 2 types of taxis in Buenos Aires. One is a smaller car, perhaps a Toyota Corolla, but I think most of them are smaller. And in the trunk they have a natural gas tank (I think it's natural gas, not that the substance matters, what matters is the tank!) that eats up half the trunk. So those cars will work for 2 people, maybe with 2 bags one of which can go up front. So, where's my wheelchair supposed to go? The other type of taxi is larger, can hold more luggage and people, but they are small SUV type cars, I think often called an MPV, or minivans. And I can't get into them.

To get into a car, I put a sliding board, also known as a transfer board, under my thigh on one side and on top of the car seat I'm headed to on the other. I then slide myself over the board from the chair to the car. My wheelchair seat height is about 20 inches or 50 cm, so it's easiest to do this if the car seat is close to that height. Vans and minivans are impossible, and MPVs are marginal.

There are other cars out there, ones that use diesel instead of natural gas, with better trunk space, but finding them and arranging a ride in them is really hard. Another complication is that the cars aren't the same as we have in the US. In Iguazu, the airport pickup service is in a Chevrolet Meriva, what in the world is that? I did my research today, another 2 hours of my time, to try to figure out the car in the US most similar to a Meriva, so hopefully this weekend we'll go out "car shopping" to see if I can get into them.

So, I've spent quite a bit of time this week trying to email and arrange a ride with suitable cars using the services of the concierges at the hotels, and after about 5 rounds of emails, it still isn't arranged. I'm just about ready to say 'forget it, we'll take 2 taxis'. That means taking our chances a bit at the airports, making sure we get a reputable (read: legal) taxi, but honestly, how hard can that be? The craziest part is that it's only because I've been to Buenos Aires before that I know about this taxi problem. If this were my first time there, I'd go there innocently and probably get lucky with the first cab we flag down.

2 things are making the email process not work. I have this tendency to want to explain everything (look how long this blog is!). I'll explain about needing the seat height near 50 cm, and a large trunk. And I believe the concierges (yes, plural, for more than one has responded to me even from the same hotel, with conflicting answers no less, and I have worked with 2 hotels) aren't fully reading my email either. I don't know if there's a language issue or not, their replies seem to be in good English, just not always answering all my questions.

I should stop complaining. Most people, especially those with disabilities, won't have these opportunities to travel. Traveling is expensive, and some disabilities make travel harder than others. To my friends in power chairs, I don't know how you do it! I'm lucky to be able to travel at all, and I know this. And in the grand scheme of things, a few difficult car rides are a small part of this whole trip. Besides, with a little more of my time, I will have something set up, and chances are it will all go smoothly. No one will know how aggravating it was to set up, not even my husband most likely. So, I wrestle with feeling irritated about all the hassle, feeling petty for complaining about something so minimal, excited about the trip and anxious that something won't go right. And stressed that it isn't all done yet, and I'm running out of time.

I wish there was a Cloud Nine shuttle service in Buenos Aires and all the cities of the world! You don't realize how good a thing it is here to be able to book a wheelchair accessible van any time, till you are in a place that doesn't have it.

But there isn't a Cloud Nine to help me, and tomorrow I'll try another round of emails. And before I know it, I'll be off. I hope to write blogs while on the trip, even if I can't publish them till I get back. Stay tuned.

Taking Care of Cats

It is more important to be able to arrange for tasks to be done well, than to do them yourself, though sometimes you still feel frustrated or even like a failure. OK, so I'm trying to sum up in a nice neat sentence what it's been like these past few days, and perhaps to make myself sound wise as well.

The story begins about 2 weeks ago, when one of our cats, Shakespeare, was limping. We took a look at his declawed front paws and realized that a couple of nails were regrowing. And we looked at his brother, Marlowe's, feet as well, and the next weekend took both off to the vet. She recommended surgery, to remove the new growth, and to do a teeth cleaning as well since they were anesthetized anyway. We have had Shakes and Marlowe about 2 years, and according to the Humane Society, they are now about 11 years old. No idea who did the declawing or when, but whoever did it was incompetent and did not really remove all the nail. Apparently there are several possible procedures, some better than others.

A week ago they both had the surgery, and in the end the vet had to go in and essentially totally redo the declawing on every single nail. 2 of Shakes' nails were infected. One nail had regrown, broken off, regrown again, broken again and was trying to regrow for the 3rd time. The vet said sometimes it was hard to get a hold of the little shards left to be able to cut around them and get them out. It was a rough surgery, and they stayed 2 nights at the vet's so they would move around as little as possible and she could observe them more. I went in to visit after the first night (admittedly more to make myself feel better than to reassure the cats) and talked to the vet. I wouldn't say she was close to tears, but clearly it was an emotional experience for her to do this extensive a declaw surgery on older cats. She was especially mad at this unknown vet. I suspect that if declawing were made illegal that both this vet and I would support the legislation.

I won't declaw a cat myself, but I know our house is a safe place for declawed cats. We'll never let them outside intentionally. So, if a cat or pair of bonded cats at the Humane Society seems a good fit for us, and happens to be declawed, we'll take them. And we have 4 cats now. No more!!

Anyway, back to my story. Shakes and Marlowe came home 2 days later, with bruised and stitched up toes, cones on their heads to keep them from biting at their toes, pain patches that made them loopy, antibiotics, and instructions to use special litter made of newspaper. We were told to keep them from jumping down off anything, even from a chair. The weight on their front paws as they jump is enough to split their paws open. So we cleared one room of furniture, put pillows and blankets on the floor, and barricaded the windowsill so they can't jump up on it. Everything is in there - catbox, food, water, beds - enough to keep them alive, and bored.

The pain patches came off last Friday. Their hair had been shaved and a small 2 inch square of plastic was firmly stuck to the skin. Even with a lubricant, those did NOT come off easily, and the resulting spots looked raw and must have hurt. Yesterday we took off the cones, and today is the last day of the antibiotics. Perhaps Thursday or Friday we'll see how they do jumping, and Saturday we go back to the vet. If the stitches haven't dissolved and fallen out, hopefully she'll remove them. The paws all look ok, but Shakespeare is limping as bad as ever. We hope this is because of the stitches and bruising, but it's hard to tell still. Then after that we can reintroduce them to the rest of the house.

All of this is the cat side of the story. 2 kitties who should never have had to have surgery, went through a very painful experience, followed by about 2 weeks of isolation while healing. Hopefully at the end of this coming weekend it'll all be over.

It has not been easy for me either. Sure, I haven't been in pain. But it's been my job, and my husband Jim's job, to take care of them. They are our babies right now, and when your kids are hurting you want to care for them, to comfort them as best you can. And I have had a hard time of it.

Anyone who has owned cats knows that most cats don't much like to be picked up, or to be locked up. Every cat I've ever owned will trot away from someone who seems bent on catching them, if not break into a run. So, catching a cat usually involves a little trickery and sometimes a bit of speed. If there are cat carriers in sight, the project is even harder. No cats like cat carriers, because that means CARS.

We've had 2 cats confined to a room with no furniture and special litter, and then 2 cats free to roam the rest of the house. Going into and out of the room means keeping someone from getting through the door with you, both directions. My wheelchair makes it really hard for me to get into a room without opening the door wide enough for a cat to escape. So for me to visit them, someone else has to be there as well, to help lock up the 2 trying to get in the sickroom into another room, and to hold back the potential escapees. And while I am pretty good at popping a pill in a cat's mouth, I'm not at all good at catching and picking up any cat. They move too quick for me. By the time I have my wheelchair up next to one of them, lock the brakes and get ready, they are 2 feet away, if not under a table or sofa! And even if I DO get a grip, only one of our cats is light enough, for me to lift one handed.

I'm a high level para, T1/2 for those who know what that means. So, I have good hand muscles, and most of my arm muscles, some shoulder muscles, but no trunk or back muscles. So if I bend over I need one arm to pull me back up. Anything I lift has to be with one hand. When my kids were little I would dress them in Oshkosh overalls so that I could grab the back of the overalls with one hand and lift them up. (advertising pitch here - Oshkosh were the only really reliably strong overalls for that job. Others with buttons on the front weren't safe, the buttons would pop off as I was lifting) Needless to say, I taught my boys to climb on my lap as soon as they could! But lifting a 10 pound cat who is not wearing overalls is tricky. They can't be too wiggly, and when you put your hand under their rib cage, their weight has to be pretty evenly distributed between head end and tail end. Only one of my cats fits this bill, Marlowe, and even he doesn't always cooperate, he is a cat after all. 2 are too heavy on the tail end, one is just too wiggly.

The cats came home from the vet, and Jim and I would go in together to tend to them. One day he took care of them alone in the morning before he went to work because I wasn't up early enough. And after work we both went in, sat with them a while, chatting with each other, petting the kitties. Marlowe spent every minute on my lap, his head tucked under my armpit. (Who knows why he does this, but he loves to squish his head into things. His brother does it too, but not as much.) It felt good to comfort them.

But Jim had to go on a business trip starting Sunday night, and is still away, a total of 4 days. And I've had to hire a cat sitter, and limit my visits to just twice a day when help is here. And this is where it's been hard for me.

I know the cats are ok, eating, pooping, sleeping, healing. Sometimes I hear them crying, and banging on the door. They always make noise right after I get up in the morning, when I feed the 2 'free' cats. I time it so I get up only about half an hour before the cat sitter comes, so they aren't upset too long. I imagine they are thinking that they are missing breakfast, and I feel guilty. And if I'm home all day, at some point later I'll hear them again, and there's nothing I can do to comfort them. If I go to the door and talk through the door it seems to make them cry more. Try to put yourself in my place, and imagine how it might feel to hear your pet crying and calling for you, and know that if only you didn't have a wheelchair you could comfort them. You're torn between wanting to leave the house, and wanting to listen in case it gets worse.

Actually I've hired a cat sitter couple. Sometimes the man comes, sometimes the woman, both are good. I'm sure it feels odd to them to cat-sit when the owner is home. Usually they take care of animals when their owners are on vacation. In a way, I've been really glad to have them, especially the woman - she works in our vet's office and is very knowledgeable. Shakes was limping badly Sunday and we were close to taking him to the vet's again, but she came and looked at his feet and reassured us. She's helped decide when to take off the collars, and offered more pain meds if we thought it would help Shakes. So, I'm not really sorry to have to hire her.

But at the same time, I wish I didn't have to hire someone to do this task. An able bodied person wouldn't. I'm grateful that the $30 a day isn't painful. And when we got the cats I was fully aware that there were some things that I couldn't do, that Jim would have to do more. So, I'm not really surprised that I need help. The timing was just unfortunate, that he had a business trip during the recovery week. And I know the cats really are fine. I just would like to spend more time with them, hold them in my lap and just sit with them.

And it's an echo of a larger story of what having a disability means. What is more important - doing a job, or being able to organize a job to be done the way you want it to be done? If you can't do a project, is it really yours? How will others see you, especially those on the other end of your care?

I know that the first few years after my injury, I went through a strong "I can do it myself" phase. (Jim will tell a story about the first time he interacted with me at college. He was trying to hold a door for me and I blasted him for it. I don't even remember the incident, but he sure does. We didn't know each other then, but like my last post pointed out, he remembered me a year later when we did meet.) But somewhere along the line, I realized, and I think most people with disabilities realize, that there are limits to what we can do, and that getting to the eventual goal is more important than some of the means to get there. I would even contend that those people who stay stuck in an "I can do it myself" mode are more likely to burn out, and be rather angry people.

All the same, there are times when it hurts. I remember one time when David was little (David being my oldest son, now 25) and he wanted to kick a soccer ball around outside. It's not much fun when there is only yourself to play with. I would have given anything to be able to kick a ball with him. Or later, when Stephen's (Stephen being my younger son, now 23) soccer team had kids vs parents games - I would have loved to play then too. But I'm never going to play soccer, and instead I found them teams, and some years was the team manager, going to most of their games. I doubt that either of my sons would say I wasn't involved in their soccer life, or other activities for that matter, with the exception perhaps of Scouts. And they might say too, that they wished I could kick a ball also. But it was ok. Overall it was ok.

Not long ago, I tried to comfort a friend who had recently adopted a baby from China. She was in the hospital, laid up for several months, and it was tearing her apart that others were caring for her new daughter to the point where she thought her daughter wouldn't see her as mom. I am really condensing the problem here, I know. But my point is, that because she was the one telling everyone else what to do, the one remembering which foods give her daughter the runs, which detergent to wash the clothes with.... her daughter will know, in the end, who her mom is. That day, my friend was slightly comforted, as much because my kids are older and doing well, as because she believed my words. I bet that today, months later, as she's regained her place as mom, that she understands better already. I've known quadriplegics who were good parents, and they needed a lot more assistance than I did. It's in the management, and the caring.

I'm not sure my cats really appreciate that I know which foods they like and that keep them healthy. Food is kind of magical for them. It just appears. But I'm sure they know the smell of my armpit, and when stressed they know it's a comfortable place to be. So, while I am frustrated for a few days, we'll get through it ok. Just a couple more days.

A Beginning

What is it they say - that the first sentence of a book should hook the reader? OK, well, I'm not writing a book. But I would like to know if anyone finds my writing interesting. I like to write, mostly letters and personal essays. Might I write something others would like to read? Let me know as time goes on, ok?

Paraplegia 101. I hesitated with this title, because I hate to think my disability defines me. But it is a huge part of my life. And more importantly, it's the first lens others see me through. Just this week, a woman I met at the county health and human services office, (I was there getting the H1N1 shot) said that she thought our kids had gone to school together. Well, we talked, and it seems that yes, they probably did go to the same school. Weren't in the same class, mind you, but she had seen me on campus and remembered me. I hadn't a clue who she was! And my kids are now 23 and 25 years old. What she remembered was me from almost 20 years ago. My 23 year old left that school when he was 4.

I should be flattered that I obviously look the same at 52 as I did at 32. But I know it isn't that simple. I weigh 40 pounds more as a start. And believe me, I know there are other changes! Granted, my hair color is the same, thanks to chemistry and my foresight of saving a ponytail I had lopped off long ago, when I gave up long hair for short. (a procedure I recommend to all women, saving the hair I mean, not keeping it short)

No, my wheelchair makes me more memorable. It is a huge part of how others see me. And, like it or not, my paraplegia is a huge part of who I am and what I do.

But, having said that, being a paraplegic is not all I am. So, I am of 2 minds - on one hand I do want people to know what the hassles are of a disability (I am putting this mildly for those who have disabilities, I know, I know) and on the other hand I plan to talk about non-disability things that interest me. So, yes I will talk about accessibility and wheelchairs. But also - there was an amazing sunset today, not a common sight in San Diego, and yet we have had 2 last week. 2 of my cats are headed for surgery next week, and reacting to the antibiotic they need to take ahead of surgery by being rather aggressive to each other. So, at this moment I can't say exactly what I'll write, but hopefully those little things that show our humanity, and altogether our commonality, despite my disability.

And today? It's a beginning. Hello.