It’s Friday night, and I’m a chess widow. I kind of like this actually. The week is over, and I get a quiet night to myself. Even though I don’t work outside the house, I do work in one way or another all week, and Fridays for me are like Fridays for so many – that ‘ah’ feeling that the week is over, and the weekend is here. So, when Jim goes off to chess, I have a quiet evening to myself to read, or watch a chick flick, or to write. I could go out, sure, I even sometimes hear of others who are alone on Fridays on a regular basis. But, I’m introverted and recharge myself when alone. Well, alone with 4 cats.
Sometimes I look forward to Jim being out of town on business for the same reasons. It isn’t that I can’t wait to have him leave, it’s that I like my own time in the evening once in a while too.
Earlier today I was really looking forward to a long evening for writing, but it’s not been an easy day, and unfortunately that’s meant my energy level is lower than optimal for getting words together in an interesting essay. In fact I’d even say that some things have me feeling rather depressed. I almost hate to say that, for I suspect a few of my friends will be checking in on me in the near future to see if I’m ok. Well, that’s what friends do, I know. And I do appreciate their concern. I don’t want to stop writing because of how others will react. And I’m not saying leave me alone. But don’t worry about me, I basically am ok, just having a low day.
Here’s why:
My wrist is hurting again, enough that I’m taking anti-inflammatories again round the clock. It seems to be worst at night, so I’m wearing a brace as long as I can stand it when I sleep. It is pinchy and if I wake up because of a jab of pain, I become more aware of the other pinchiness of the brace and yank it off. The pain is a little different this time, sharp jabs of pain from time to time – more at night than when I’m awake. Before it was mostly when I bend the wrist this way or that, and now it seems to happen for no reason. I’m pretty close to going back to the doctor again. It is in the same location, I’m sure it’s the same tendon. I have to face the idea that my wrist pain is never going to totally go away on its own. And that means surgery. I was so optimistic before. The worst part though, is that from time to time, my left wrist hurts too. This is definitely a repetitive activity problem. Surgery – groan - if I have to rest my wrist that’ll mean staying in bed, lying down, unless someone rolls me over! I can’t even sit up without pushing down on my hands. The only thing that will get me through it, is that I’ll know it’s temporary.
I was doing a lot of cooking today, getting ready for a dinner party we’re having on Sunday – and I found myself wondering how much longer I’ll be able to do all this cooking. I made a vanilla bean panna cotta, which is wonderful, but means lifting a pot with 5 cups of hot cream and milk and pouring it carefully through a strainer into another bowl. Well, I cheated and used a ladle. I’ve already stopped making apple cake unless someone else is home to put it in and out of the oven. I used to be able to balance a cookie sheet with a heavy cake centered on it, in and out of the oven, with one hand, while my other hand held me safe in the chair. Probably explains why my wrists are vulnerable now.
[An aside about my apple cake -I got the recipe when I was a teenager. I think my friend had clipped it from a newspaper, and later I adapted it to an angel food pan. I've made it so many times I could make it in my sleep, though these days it's so heavy I need someone else home to get it out of the oven. Been my kids' favorite their whole life. When Stephen was a freshman at Berkeley living in the dorms, they would send out newsletters to parents, and one time they asked for recipes for favorite foods from home, that they would serve on a special "home cooked foods" night in the dining hall. My apple cake won for the dessert category. Stephen was very proud, though he did say it wasn't quite like mine.]
I’m still having problems with my chair making clicking noises. I really should be keeping notes on all the chair stuff. One day I’ll summarize all the hassles of getting a new chair and it’ll show that AFTER the chair arrives there can be months of adjustments. As of now I still have a not quite explained noise that appeared when I swapped my solid and pneumatic tires. I’ve put together pieces made by several different companies, and there’s a little bit of finger pointing going on. At this point, several visits and phone calls since the noise started, the best theory is that the handrims are not tight onto the wheel, or that the wheel lost it’s true when the solids were taken off of it, resulting in a poor fit between rim and wheel. I have an appointment on Monday to try some experiments, and should be able to figure this out then. Next step is shipping the whole wheel back to Arizona where the handrims were made to let the manufacturer try to solve this.
Last week was hot, and I really don’t do heat well. If I didn’t have AC I don’t know how I’d stand anything over 80 degrees. And this house is the pits! I’ve spent a lot of time trying to figure out why it won’t cool down. I know there are lots of reasons – too many halogen lights and electronic equipment, no heat blocking shades on 2 windows facing east, concrete right up to the sides of the house, raised ceilings - but last night when it was 60 degrees out, and all the windows were open, why couldn’t the thermostat in the house go below 77? I think the main problem with the house is the slate tiles on the sides of the house. They retain heat from the sun. Doesn’t help in winter, because there’s less sun! The slates look good, but when they start to fall off, they are getting removed, not replaced, and the whole house gets restuccoed. Maybe the main problem is that I hate the idea of air conditioning when it’s cool outside, and I don’t like spending the money on AC.
Today has been a rough day, mostly because I got off to a bad start. Vertigo was back, I assume I just slept wrong – too much on my left side. Maybe one cat was up against me and I leaned my head back too far. Who knows? It totally messed up my morning, so that I didn’t get out to do the chores I wanted to. They’ll keep till tomorrow. It’s ok, it’s ok.
This should be my mantra – it’s ok, it’s ok.
Really there are some good things going on too. Had a lovely dinner out with a friend on Tuesday. We’re going to make this a regular plan every couple of months.
No harm done in my fall almost 3 weeks ago. The tender spots on my head and shoulder are long gone. And for the vertigo I’m having now, the stretches really help. It was hard going at first this morning, getting dressed, tending to my cats, but once I was able to get my neck stretched out I felt much better.
The house painting is done, not the driveway yet, but the house anyway looks good. The gardeners were here Thursday so actually the house and yard look good enough to show off to company this weekend! That always makes me happy, when the house looks pretty, not showing off I mean. It makes me cheer up just to sit outside on the patio and watch the birds in the fountain taking a bath. And the weather has been cooler, so I have been outside more. Even my tomatoes are looking better!
Jim and I saw one play last weekend, and will see another this weekend – it’s summer! Outdoor Shakespeare festival at the Old Globe! Lots of fun things to do in summer. And we’re planning a trip for October too – my writing workshop and a few days in Napa.
I’ve been reading a lot – some for book club, but other books too. The last one was called Still Alice by Lisa Genova, about a woman getting early onset Alzheimer’s. I wouldn’t call it great writing exactly, but I liked it overall. Easy summer reading, even if the subject is a bit sobering. I hope I don’t get Alzheimer’s! I have enough issues going on for anyone helping take care of me in my old age.
In fact the only thing I don’t seem to be doing as much of as I’d like is writing, and that’s a complicated topic. I haven’t abandoned the idea of writing, obviously, since I’m writing today. I’ll just call it summer slump.
I’ll end with saying that I have really good friends. I’ve been thinking about this a lot lately. I’ve never been outgoing, which isn’t the same as being shy or reclusive. I just don’t party much or make friends easily. I like doing things with one person at a time over groups in general. 6 years ago I moved back to San Diego, knowing only 5 people (or couples) from living here from 1979 - 95. Of those 5 only 2 are still friends now. (OK, here’s the skinny on the other 3 – one moved away, one essentially rejected me if I put it simply, and 1 I stopped calling because the relationship was SO onesided). But these days I feel like I have lots of friends and am possibly the most social I’ve been in my life! Maybe it’s because my friends are now my own, not related to kid-centered activities. Maybe it’s because I know more people who are home in the daytime too. And maybe I’m more willing to try to get to know strangers and be social. Maybe it’s because I’m a happier person married to Jim than I was before, and other people see that. But whatever the reason(s), I like the feeling, and I’m grateful – not to the people who are “friending” me, because I assume they aren’t my friends out of pity, but because they like me – but I am grateful to be in the right place at the right time, where I have found people whose company I enjoy. The social scene for people with disabilities is not always easy. Homes are hard to get into. Hugs are awkward. Bladder and bowel issues are embarrassing, so intimacy is complicated. My father once told someone that he didn’t think I’d ever marry. I was 20 then. Maybe some stigmas are dropping, and the best place to start is with the stigma we give ourselves. I’m introverted, but I like having a social life too.
Friday, August 27, 2010
Saturday, August 14, 2010
a week's worth of notes
I can’t believe I haven’t put a post in for over a week now. I’m not entirely sure why either. The past 2 weeks have been busy, definitely, but I’m fighting some kind of writer’s block too. All the same, I’ve taken notes and in short form – here are some topics on my mind:
Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.
Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.
Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.
Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.
Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.
Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!
The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.
That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.
Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.
Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.
Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.
I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.
Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.
Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.
Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.
Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.
Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.
Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!
The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.
That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.
Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.
Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.
Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.
I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.
Tuesday, August 3, 2010
2 random thoughts
2 random thoughts for today
1 – I got summoned for jury duty, and this time I’m going to get a permanent exemption. I hate to do it, for reasons I have to think about. Perhaps it’s simply that I hate the thought that my disability makes me unable to do even 2 weeks worth of full time work. I did get on a jury once, so I do know how hard it is for me from experience, not just from guessing. I have 2 difficulties – one is getting there by 8 AM and still getting enough sleep. And the other is related to the locations of the bathrooms. The courtroom I was in had some bathrooms nearby, but they weren’t wheelchair accessible. To get to the accessible ones you had to go down a hallway that was 2 blocks long (I kid you not, there was a bridge in it over a street) to an elevator and then find the way to the bathrooms in the lobby of the building. On break time I did not have even enough time to get to the bathroom and back, let alone use it! So, I limited my beverages and food intake so I wouldn’t have to go. Even using a catheter, you need bathrooms sometimes to empty a legbag. And an IBS flare up would have been horrible. So, they’ll grant me an excuse on medical grounds, but I don’t like it much. I like to think that I’m the kind of person everyone would want on a jury! And if everyone like me found a way out, who’s left?
2 – We had dinner in the Gaslamp District downtown today, and I was noticing how many beggars use wheelchairs. I didn’t count but it was a much higher percentage than you see in the general population. I would even say 25% of the beggars. That deserves its own discussion perhaps, another day. But it reminded of a time when I was 16 years old, in downtown Philadelphia, pushing myself 2 blocks from my dad’s office to a dental appointment. I hadn’t been using a chair very long then, so I was a novice and those old chairs were heavy, so it was slow going. I had a cupholder on my chair and I was carrying a newspaper tucked in next to my hip. A young adult black man – the image in my memory is rather tall, thin, adult but not old, perhaps as old as 30, way older than me – came up to me as I passed and reached his hand out right next to me. I thought he was going to take my newspaper! So, I swatted him away!! Then a group of men started laughing at him (and/or me), I assume they were his friends. Later it occurred to me that he was only reaching out to put money in my cup. There were people in wheelchairs begging for money in the 70s just as there are people begging now. I had never been part of a group that took handouts, and it had never occurred to me that anyone might see me that way. I guess a girl in a chair is a girl in a chair. Back then I had a lot of trouble knowing how to behave when around one of these street people – do I nod or say hello, or do I ignore and move on. Now, well, it depends on where I am. In Berkeley there are just so many street people that the only way to tolerate them is to ignore them one and all it seems. They are quite pushy there. But in San Diego (maybe because we have fewer that seem deranged), I find it doesn’t really hurt anyone to say hello, and acknowledge a small type of brotherhood, they might not get my dollar, but friendliness is good for us all. Besides, once in a while I find myself thinking, that “there but for the grace of God, go I”.
1 – I got summoned for jury duty, and this time I’m going to get a permanent exemption. I hate to do it, for reasons I have to think about. Perhaps it’s simply that I hate the thought that my disability makes me unable to do even 2 weeks worth of full time work. I did get on a jury once, so I do know how hard it is for me from experience, not just from guessing. I have 2 difficulties – one is getting there by 8 AM and still getting enough sleep. And the other is related to the locations of the bathrooms. The courtroom I was in had some bathrooms nearby, but they weren’t wheelchair accessible. To get to the accessible ones you had to go down a hallway that was 2 blocks long (I kid you not, there was a bridge in it over a street) to an elevator and then find the way to the bathrooms in the lobby of the building. On break time I did not have even enough time to get to the bathroom and back, let alone use it! So, I limited my beverages and food intake so I wouldn’t have to go. Even using a catheter, you need bathrooms sometimes to empty a legbag. And an IBS flare up would have been horrible. So, they’ll grant me an excuse on medical grounds, but I don’t like it much. I like to think that I’m the kind of person everyone would want on a jury! And if everyone like me found a way out, who’s left?
2 – We had dinner in the Gaslamp District downtown today, and I was noticing how many beggars use wheelchairs. I didn’t count but it was a much higher percentage than you see in the general population. I would even say 25% of the beggars. That deserves its own discussion perhaps, another day. But it reminded of a time when I was 16 years old, in downtown Philadelphia, pushing myself 2 blocks from my dad’s office to a dental appointment. I hadn’t been using a chair very long then, so I was a novice and those old chairs were heavy, so it was slow going. I had a cupholder on my chair and I was carrying a newspaper tucked in next to my hip. A young adult black man – the image in my memory is rather tall, thin, adult but not old, perhaps as old as 30, way older than me – came up to me as I passed and reached his hand out right next to me. I thought he was going to take my newspaper! So, I swatted him away!! Then a group of men started laughing at him (and/or me), I assume they were his friends. Later it occurred to me that he was only reaching out to put money in my cup. There were people in wheelchairs begging for money in the 70s just as there are people begging now. I had never been part of a group that took handouts, and it had never occurred to me that anyone might see me that way. I guess a girl in a chair is a girl in a chair. Back then I had a lot of trouble knowing how to behave when around one of these street people – do I nod or say hello, or do I ignore and move on. Now, well, it depends on where I am. In Berkeley there are just so many street people that the only way to tolerate them is to ignore them one and all it seems. They are quite pushy there. But in San Diego (maybe because we have fewer that seem deranged), I find it doesn’t really hurt anyone to say hello, and acknowledge a small type of brotherhood, they might not get my dollar, but friendliness is good for us all. Besides, once in a while I find myself thinking, that “there but for the grace of God, go I”.
Monday, August 2, 2010
Back in the Saddle Again
I guess I’ve taken a 3 week vacation from writing. I didn’t intend to, and didn’t realize till today how long it’s been since I last wrote an entry. I’ve been struggling a lot with understanding why I’m writing, who I want to write for, what I want to say in general. And my writing has been bringing up old memories and feelings as well, that I’ve wanted to focus on. About the time I stopped writing I had realized that it would help me to go back into therapy again, but I wasn’t quite ready to bring that up to Jim, my husband – and so that was another issue to think about.
So, what I did do during these last few weeks was to write down a topic heading, say …. IF I had written that day…. What would my topic have been? And for my own note taking, to also jot down what else I did that day.
So – just to get me current – today I’m going to put out that list of all the topics that were missed! Perhaps at some point I’ll come back to them, probably will actually, but they won’t get their 1200 word treatment today.
1 – A book I’ve been reading – Rise Above by Ralph Braun. It was given to me by a sales guy at the place where my Chair Topper is serviced. I was waiting around, and looked like I needed something “inspirational” to read I guess. This kind of book drives me crazy. The title alone is annoying.
2 – 7/13 was the Anniversary of my going home from rehab – another milestone from 1973 –and the beginning of another phase of changes.
3 – parking issues – oh boy, lots of material here. But one day I parked in a non-handicapped spot because all the H spots were taken, and the store was one I REALLY wanted to go to. The non-H spots were fairly large so I could get out ok, and I took that chance I’d get parked in. Been a LONG time since I did this when out alone.
4 – HOT HOT HOT – I can’t handle the heat at all anymore. AC running non stop
5 – My physical therapist gave her stamp of approval for my new chair. I’m very glad. I do sit up straighter, not perfect, but better.
6 – Wrote a letter to Tilite (the chair manufacturer) complaining about the arms – too heavy, hard to put on and off. Also sent a positive testimonial and photos since they were nice enough to swap out the higher arms for lower ones for free.
7 – another parking day – spent time previewing the area around an event I’ll attend in August, mostly puzzling out parking issues. I know there are people who pre drive a route and check parking when are going someplace new, but I’m not usually one of them!
8 – Got alterations done of several shirts – GREAT IDEA! I think this will change how I shop for clothes. If I like a shirt basically, and the only problem is something like irritating ¾ sleeves – buy it and get it fixed!
9 – My relationship with my Mom has changed a lot over the years, lots to talk about there. Now I’m actually getting along with her the best I ever have.
10 – Blogging, writing, takes a lot of time. After a week it’s clear I have more time, but I miss the writing.
11 – While I get dressed – Jim can feed the cats, make coffee, take a shower and get dressed. If I take a shower before getting dressed, he can also eat breakfast, read the paper and give cats treats. I hate being anywhere before 10:30, because it takes me 2 hours to do my morning routine. I can’t imagine trying to be at work by 9.
12 – Comic-Con – I was too late to get tickets, and I really wanted to go. I found someone who would go with me, to push me about because I know the facility is too big, but I was late getting tickets. Then I found out that whoever is pushing me can get in free! I’m going to go next year.
13 – Allergies! Not disability related, but so annoying! We had a few days of hot weather, and the cats were shedding. I think that’s what messed me up.
14 – Terrible seats in a movie theater, so annoying to be in the back row on the side. I can live with it, but I hate my friends having to give up better seats.
15 – One of my son Stephen’s friends is biking cross – country, like Stephen did 3 years ago. This time I find it more fun to read the blog about it. What an adventure! And when it’s not my kid, I worry less. This is something I will never be able to do, unless it’s by car.
16 – A friend and I are having dinner together in August, my turn to pick a restaurant. We both use wheelchairs. Once again I’m picking someplace partly because of parking. I hate picking some one place over another because of parking! With restaurants there are so many places to choose from it isn’t that big a deal, but I might end up picking a therapist based on parking too. That is more than annoying.
17 – More sleep trouble – cats.
18 – I am a super organized person, always have been, even pre injury. Now though, it does make me feel like I’m more useful that I can help a friend of mine who is moving with my organizational skills, even though I can’t pack and carry boxes for her.
19 – a biggie – wheelchair update. I decided to switch the tires for my 2 sets of wheels. I like the orange spoke wheels with the smooth push rims best – so thought I’d put the pneumatic tires on them, and move the solid tires to the yellow spoke wheels. Things did not go smoothly, and the repair guy punctured one inner tube – so I’m on the solids till new inner tubes are ordered.
20 – running low on gas, had to pump my own (with help from another customer because the push pad was so high up)
21 – I have a 2004 Toyota Avalon, caught in the latest recall for possible breaking in the steering column. I called immediately for an appointment, to be called back and told they didn’t have the parts yet! So, for now, I’m driving around a “risky” vehicle. Not super worried.
22 – I am listening to a book on tape about a high school shooting – why do I end up picking this kind of book? This time I would say I didn’t realize it was about a shooting, I picked the book up because it was the only book on tape by that author, and honestly it’s a good story! But did I read a summary at all before checking the library book out? There must be some reason I gravitate to stories like this, or do I?
23 – really busted tires. I’ve been sitting on the solids for 4 days, and they have a squeak every time I go over a certain spot on the tire. So, I did some research. The tech broke a cable inside the solid tires. They are busted, have to be replaced. I’m not in danger riding on them, but effectively my attempt to swap pneumatic tires and solids has caused me to have busted both sets. Ordered another set of solids, a tool to put them on, new inner tubes and new rim liners to keep spokes from poking the tubes. $103. Meanwhile until supplies come in, I’m sitting on squeaky tires on the yellow rim wheels I don’t like. Sigh.
24 – Somehow I messed up my 3rd toe on my left foot. I have a big scab at the tip of the toe, half under my nail. Where did I bump it? What did I go?
Last but not least, and this does deserve a full paragraph at least, is the topic of therapy. Today I met with the therapist I saw for about 10 years, between 1980 and 1990 approximately. As I was thinking about the idea of therapy, it occurred to me that seeing Melody would be a good first step. My insurance plan is decent. It covers all but $20 a session, with no maximum number of sessions a year. I thought I might see her again, find out what her rates are, and ask her to review the list of therapists who are covered in-network for my insurance. I wasn’t even sure she was doing the kind of therapy I’d be interested in. The last I knew (20 years ago) she was switching to more psychoanalysis. When I found her listed in the yellow pages, I was at the same time both pleased she was still in practice and at the same location, and somehow sad that her life hadn’t taken her on some new journey. Perhaps when you are happy with what you do, then there’s no need to move, huh? For my own sake, I’m glad she is still here – both alive in this world, and in San Diego, and in practice. She said I looked just the same, which I think was just being nice. She looks good, a bit thinner, but healthy, just older. She sounds exactly the same. It felt a bit like going back to see “Mom”, a bit like seeing an old friend to catch up on what was new, and a bit like therapy all in 45 minutes.
But, I still will have to decide whether to see her, or pick someone new. Melody knows me, remembers a lot about me, and there’s some value in that history, though it’s hard to put a dollar value on that. She doesn’t take insurance though, so tomorrow I’ll find out what my insurance pays for out-of-network doctors. Or maybe I’d be better off finding someone new, who doesn’t know me, sort of a clean slate thing, especially if I find someone with more experience with people with disabilities. Does this matter? Tomorrow I do my research, and then I’ll have to decide. Jim’s ok with all of this, though my sense is that it worries him a little. And I admit I hate the idea of a year of therapy costing as much as a good vacation would for both of us.
Right now, my reason for therapy also feels like fluff, an extra – not because of some psychological turmoil, but rather just because I want to understand something. I want to know where this writing is taking me, what it is that is driving me to write, and who I am writing for. And I want a safe place to talk about the emotions that some of my topics bring up. The therapy, the writing, are luxuries I have because I live a rather easy life. I’m not worried about where my next meal is coming from, or how I’m going to pay the rent. I’m not doing this for some eventual money. If I didn’t write I doubt the world would notice or care. And so I feel more guilty about using money selfishly just on myself, when both Jim and I could enjoy it. All the same, something is feeling right about my desire to write about my disability now.
And that’s where I am today.
So, what I did do during these last few weeks was to write down a topic heading, say …. IF I had written that day…. What would my topic have been? And for my own note taking, to also jot down what else I did that day.
So – just to get me current – today I’m going to put out that list of all the topics that were missed! Perhaps at some point I’ll come back to them, probably will actually, but they won’t get their 1200 word treatment today.
1 – A book I’ve been reading – Rise Above by Ralph Braun. It was given to me by a sales guy at the place where my Chair Topper is serviced. I was waiting around, and looked like I needed something “inspirational” to read I guess. This kind of book drives me crazy. The title alone is annoying.
2 – 7/13 was the Anniversary of my going home from rehab – another milestone from 1973 –and the beginning of another phase of changes.
3 – parking issues – oh boy, lots of material here. But one day I parked in a non-handicapped spot because all the H spots were taken, and the store was one I REALLY wanted to go to. The non-H spots were fairly large so I could get out ok, and I took that chance I’d get parked in. Been a LONG time since I did this when out alone.
4 – HOT HOT HOT – I can’t handle the heat at all anymore. AC running non stop
5 – My physical therapist gave her stamp of approval for my new chair. I’m very glad. I do sit up straighter, not perfect, but better.
6 – Wrote a letter to Tilite (the chair manufacturer) complaining about the arms – too heavy, hard to put on and off. Also sent a positive testimonial and photos since they were nice enough to swap out the higher arms for lower ones for free.
7 – another parking day – spent time previewing the area around an event I’ll attend in August, mostly puzzling out parking issues. I know there are people who pre drive a route and check parking when are going someplace new, but I’m not usually one of them!
8 – Got alterations done of several shirts – GREAT IDEA! I think this will change how I shop for clothes. If I like a shirt basically, and the only problem is something like irritating ¾ sleeves – buy it and get it fixed!
9 – My relationship with my Mom has changed a lot over the years, lots to talk about there. Now I’m actually getting along with her the best I ever have.
10 – Blogging, writing, takes a lot of time. After a week it’s clear I have more time, but I miss the writing.
11 – While I get dressed – Jim can feed the cats, make coffee, take a shower and get dressed. If I take a shower before getting dressed, he can also eat breakfast, read the paper and give cats treats. I hate being anywhere before 10:30, because it takes me 2 hours to do my morning routine. I can’t imagine trying to be at work by 9.
12 – Comic-Con – I was too late to get tickets, and I really wanted to go. I found someone who would go with me, to push me about because I know the facility is too big, but I was late getting tickets. Then I found out that whoever is pushing me can get in free! I’m going to go next year.
13 – Allergies! Not disability related, but so annoying! We had a few days of hot weather, and the cats were shedding. I think that’s what messed me up.
14 – Terrible seats in a movie theater, so annoying to be in the back row on the side. I can live with it, but I hate my friends having to give up better seats.
15 – One of my son Stephen’s friends is biking cross – country, like Stephen did 3 years ago. This time I find it more fun to read the blog about it. What an adventure! And when it’s not my kid, I worry less. This is something I will never be able to do, unless it’s by car.
16 – A friend and I are having dinner together in August, my turn to pick a restaurant. We both use wheelchairs. Once again I’m picking someplace partly because of parking. I hate picking some one place over another because of parking! With restaurants there are so many places to choose from it isn’t that big a deal, but I might end up picking a therapist based on parking too. That is more than annoying.
17 – More sleep trouble – cats.
18 – I am a super organized person, always have been, even pre injury. Now though, it does make me feel like I’m more useful that I can help a friend of mine who is moving with my organizational skills, even though I can’t pack and carry boxes for her.
19 – a biggie – wheelchair update. I decided to switch the tires for my 2 sets of wheels. I like the orange spoke wheels with the smooth push rims best – so thought I’d put the pneumatic tires on them, and move the solid tires to the yellow spoke wheels. Things did not go smoothly, and the repair guy punctured one inner tube – so I’m on the solids till new inner tubes are ordered.
20 – running low on gas, had to pump my own (with help from another customer because the push pad was so high up)
21 – I have a 2004 Toyota Avalon, caught in the latest recall for possible breaking in the steering column. I called immediately for an appointment, to be called back and told they didn’t have the parts yet! So, for now, I’m driving around a “risky” vehicle. Not super worried.
22 – I am listening to a book on tape about a high school shooting – why do I end up picking this kind of book? This time I would say I didn’t realize it was about a shooting, I picked the book up because it was the only book on tape by that author, and honestly it’s a good story! But did I read a summary at all before checking the library book out? There must be some reason I gravitate to stories like this, or do I?
23 – really busted tires. I’ve been sitting on the solids for 4 days, and they have a squeak every time I go over a certain spot on the tire. So, I did some research. The tech broke a cable inside the solid tires. They are busted, have to be replaced. I’m not in danger riding on them, but effectively my attempt to swap pneumatic tires and solids has caused me to have busted both sets. Ordered another set of solids, a tool to put them on, new inner tubes and new rim liners to keep spokes from poking the tubes. $103. Meanwhile until supplies come in, I’m sitting on squeaky tires on the yellow rim wheels I don’t like. Sigh.
24 – Somehow I messed up my 3rd toe on my left foot. I have a big scab at the tip of the toe, half under my nail. Where did I bump it? What did I go?
Last but not least, and this does deserve a full paragraph at least, is the topic of therapy. Today I met with the therapist I saw for about 10 years, between 1980 and 1990 approximately. As I was thinking about the idea of therapy, it occurred to me that seeing Melody would be a good first step. My insurance plan is decent. It covers all but $20 a session, with no maximum number of sessions a year. I thought I might see her again, find out what her rates are, and ask her to review the list of therapists who are covered in-network for my insurance. I wasn’t even sure she was doing the kind of therapy I’d be interested in. The last I knew (20 years ago) she was switching to more psychoanalysis. When I found her listed in the yellow pages, I was at the same time both pleased she was still in practice and at the same location, and somehow sad that her life hadn’t taken her on some new journey. Perhaps when you are happy with what you do, then there’s no need to move, huh? For my own sake, I’m glad she is still here – both alive in this world, and in San Diego, and in practice. She said I looked just the same, which I think was just being nice. She looks good, a bit thinner, but healthy, just older. She sounds exactly the same. It felt a bit like going back to see “Mom”, a bit like seeing an old friend to catch up on what was new, and a bit like therapy all in 45 minutes.
But, I still will have to decide whether to see her, or pick someone new. Melody knows me, remembers a lot about me, and there’s some value in that history, though it’s hard to put a dollar value on that. She doesn’t take insurance though, so tomorrow I’ll find out what my insurance pays for out-of-network doctors. Or maybe I’d be better off finding someone new, who doesn’t know me, sort of a clean slate thing, especially if I find someone with more experience with people with disabilities. Does this matter? Tomorrow I do my research, and then I’ll have to decide. Jim’s ok with all of this, though my sense is that it worries him a little. And I admit I hate the idea of a year of therapy costing as much as a good vacation would for both of us.
Right now, my reason for therapy also feels like fluff, an extra – not because of some psychological turmoil, but rather just because I want to understand something. I want to know where this writing is taking me, what it is that is driving me to write, and who I am writing for. And I want a safe place to talk about the emotions that some of my topics bring up. The therapy, the writing, are luxuries I have because I live a rather easy life. I’m not worried about where my next meal is coming from, or how I’m going to pay the rent. I’m not doing this for some eventual money. If I didn’t write I doubt the world would notice or care. And so I feel more guilty about using money selfishly just on myself, when both Jim and I could enjoy it. All the same, something is feeling right about my desire to write about my disability now.
And that’s where I am today.
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