I saw the 3 vendors I wanted to see first, to be sure I got what I went to the Expo for taken care of, before looking at anything else. No problem to cover that stuff in 2 hours, and very glad I went.
What surprised me though was how much I got out of the rest of the afternoon. I visited about 6 other booths deliberately, and stopped at a few more besides. There was a wide range of products and services being offered.
I picked up some free magazines – PN (used to be Paraplegia News), which is a Veterans’ mag but useful to anyone with a disability, and New Mobility, which I once subscribed to, but grew tired of. Time to look at them again, since one friend is suggesting I submit articles about my experience in Antarctica to them. Why not?
There was an Access San Diego booth, where I picked up a guide to our fair city. Not too much in it that is new to those who already know the town. But I’m glad it’s there for tourists.
Then I went to an A-Med booth. They are a supplier of medical supplies, and I have bought urological stuff from them for at least 4 years. Have you ever had a relationship with someone totally over the phone? This happens often with travel agents, or insurance adjusters, or even a catalog company. Well, I “knew” 2 people there and met them for the first time. I was hoping that people I knew would be manning the booth that day, and was lucky. So, now I have faces to go with names, for the people who put together my order for catheters – kind of funny really. There were a fair number of companies there that were selling medical supplies, or rather their services for those sales – there was little stock there in the convention center. I was a bit surprised at this, but I guess it makes sense. It actually is hard to figure out where to buy this stuff sometimes, especially to find places willing to bill insurance.
Two places I went to were companies that I’ve bought products, and I wanted to give them feedback, and see if they had solutions to problems I’d had with their products.
Nuprodx makes a portable shower chair. It’s a well engineered product, easy to assemble, fits in a small carry case. The problem I had with it was that the chair didn’t fit in the tubs in Argentina. And the rep there acknowledged that in South America and Europe (he didn’t say Asia, but I’d guess it should be added to the list) you need something added in between the seat and the legs to offset the legs and make the leg spacing narrower. No problem, I’ll order some of these spacers. I guess that not only are Americans larger people, but our tubs are too!
And the most interesting stop was at the Frog’s Legs people. (For those who don’t know what I’m talking about, these are little shock absorbers that attach to the small front wheel.) I asked if the shock absorbers stop working in time, because it seemed to me that when I hit a lot of hard bumps the Frog’s legs made the ride worse, not better. And I was told, “Yes, after about 5 – 6 years” That’s me! So, they squeezed me in to do a repair at the very end of the day, and popped out some small plastic piece that was squooshed, and undersized for my weight as well. The Frog’s Legs people were really busy. The man there was the founder and owner of the company, lives in Iowa. His wife was taking care of sales, and they had one other worker. They were hopping, non- stop the whole day. The main reason, besides a good product, priced well for that day as well, was that they were selling wheels in all kinds of bright colors, or with colored axles. Very cool.
Anyway, I get my repair (free) and we’re headed off to the car, and something starts to click, click, click. My left front wheel was making a clatter. So, we’re back to the FL people, who were still fitting new wheels on chairs. The trouble was that the front wheel was semi-pneumatic, but had broken down inside and split. I guess the repaired FL triggered something to get loose and rattle about. I don’t fully understand what happened, but essentially the old wheels had worn out too, and so I got fitted with new black wheels with a bright orange hub. And I can tell the difference.
The service these guys provided was top notch (they kept working after the lights in the hall were dimmed and the expo finished for the day, to get as many serviced as possible), and I believe they may have just kept a customer. I was ready to say that I didn’t want Frog’s Legs anymore, that they didn’t do anything. The titanium chair folk say you don’t need them. I can tell the difference between what I had and the new wheels, though at this moment I am still not sure if it’s the new wheels (which roll easier with less drag) or the shocks. Sometime this week I’ll have to get out on rougher terrain and decide for sure.
It is just one other thing that shows me that it’s time for a new chair. Something as simple as new front wheels and fixed shocks (cost $40) already makes this chair easier to push. How come the wheelchair repair folk, when I go for annual “check ups” don’t advocate changing parts like this? It seems they only do repairs, fix things that are broken, as opposed to do any upgrades.
It is very hard when a problem comes up on you gradually, to realize there is a problem. Perhaps a year ago I should have said my chair was hard to push, and then they’d see the front wheels compressing. Who knows? What else in this chair is cracking, or compressing, or slowly failing?
Parking was ok. Bathroom situation was problematic. Lines, and long waits. When I used to intermittent cath myself it took 15 minutes. Now when all I have to do is empty a legbag I am quick, but not everyone else was. And 2 handicapped stalls were occupied (and dirty) the whole day, while 8 other stalls were often empty. They could have brought in accessible porta-potties.
The 2 freight elevators were busy all day too, and often full. Each elevator could hold about 8 wheelchairs and family. Going up from the parking lot, there was a little girl in the elevator with me who was really excited about never being in this kind of elevator before. I had to smile. I’ve seen quite a few freight and service elevators and entrances in my day. But, perhaps the ADA has changed some of that. Perhaps you have to be at a convention where there are thousands of wheelchairs, which is really an extenuating circumstance if you think about it, before you need to take a back entrance now. I think that’s a good thing.
It also struck me how cheerful the crowd was in general. All kinds of people, all ages. Jim commented on how much variety there was on how people in chairs move themselves. Some are real speed demons, some are very pokey. Some, like me, took pushes most of the time. But overall, the crowd was easy going and pleasant – much more so that you’d see at the Del Mar Fair. It was not a crowd of sick and ill people, or militant angry ones either. It was rather an enjoyable day.
Sunday, April 11, 2010
Saturday, April 10, 2010
Abilities Expo
I am really tired, but I'm glad we went up to LA today. I dislike driving through LA, the traffic is always so bad. Today I was thankful Jim was driving. Even with stop and go traffic for the last 20 miles, we got to the LA Convention center in 3 hours. The parking wasn't as bad as I expected either. There was a large area set aside for vehicles with handicapped plates - no cross hatches there mind you - but enough space that we got a parking spot.
I won't go into details now, mainly because I am so tired - but suffice it to say that we were there 5 hours, I saw all the vendors I wanted to and more, I got new front wheels and my frog's legs fixed, and I'm a lot closer to knowing what kind of chair I want to order. Mission accomplished. I'd like to get a titanium chair, color - salsa red, with Natural Fit handrims for easier pushing.
I still have a few questions to answer myself - ones where I have to weigh the relative value of various options, and one feature that I couldn't see that I'd love to see before I buy.
There was a lot of cool stuff at the expo too - extra wheels you can add to the foot pedals up front that are larger and good for going over rough ground, standing frames, ratchet looking handles that attach to the back wheels, and power assist wheels. The Colours chairs look like their creators must have been Harley motorcycle riders before their injuries - shiny chrome and hot colors, with playboy bunny trim. Nothing that I had to have, but curious stuff all the same.
And on the way home we stopped at a restaurant in Carlsbad owned by a friend. That's probably as much of why I'm tired as the expo itself, but we decided to take advantage of being in North County to try a place we hadn't been to before because it is a 45 minute drive from home.
I brought home a ton of reading material, and I know that in the next week I'll slowly sift through it. My next step is an email to the supplier to see if there's any way he can show me that last feature that wasn't at the expo. Then comes an appointment for measurements.
Friday, April 9, 2010
A Commitment to Write
I just took 2 weeks off from writing. I could say it was because of too many things going on – the still-unfinished work on the house, Jim’s mother visiting for a full week, and then Jim being away on business for the last 4 days – but we all know that’s not the whole story. Though I do have to say that each of those conditions have been stressful in their own ways. Particularly, having a houseguest made it difficult to have time to myself, let alone spend a few hours all at once concentrating on my writing. But like any time you have a friend that always seems too busy to see you, there’s some other reason there as well – could be that person’s disorganization and nothing personal, or could be they don’t really like you much. I needed to regroup. My blog today is not quite like what I was writing while on the cruise.
So, although I was not writing, that doesn’t mean I was not thinking – about what this blog means to me, who I am writing for, or who I want to reach (if anyone), what the best format is, and how much time I want to devote to it. I have come up with some partial answers, and I believe they will be enough, for now.
About a week after getting back from my vacation I figured out how to attach an analytics program to my blog, so I can now see how many visitors I get, and some basics about them – New or returning?, How many pages viewed?, Where do they live? – which also includes some rather useless facts for my purposes like What kind of internet connection they have! I can’t see individual addresses, so I can’t really tell who is or isn’t reading my blog. But I realized that it doesn’t matter! I can tell I have some regular readers, and that is enough.
10 years ago I first started thinking about, talking about, attempting writing. I didn’t get very far. I’d write an outline, or come up with some theme for a book. I couldn’t get a grip on what I wanted to say. I joined a writer’s group for a short time, but was frustrated because it felt like the sole purpose of the group was to tear apart someone’s writing. Perhaps I had just picked the wrong group, one that was too critical and not supportive enough. I didn’t contribute much, either my own writing or in comments to others. I didn’t fit in with them, for whatever reason. Perhaps I should have looked for another group then, but my life was so “busy”. So, I dabbled on my own, writing letters that I never intended to send – saying things I would never have the courage to say, journal entries, but nothing consistent. Keeping everything to myself, I had no feedback, and I found it harder to maintain the self-discipline needed to write. And then the shit hit the fan, got divorced, moved across the country. I would say I’ve only started feeling settled again since 2006.
Enter this blog, and though I still don’t get a lot of feedback, nonetheless because of the analytics program, I know I have readers. Voluntary readers! People who come back ONLY because they want to, not because they have to listen in a class, or to read my work so that I will read theirs. It’s an incredible feeling to know that someone reads your work because they enjoy it, not necessarily because it’s the best writing in the world, or because they know it’ll make me feel better (though I do know that personal friends care about my feelings and may be more interested just because they know me). All the same, knowing that on any given day someone will look to see if I have something new, makes me feel like writing more. What more reinforcement could anyone want or need? The blog has been working for me, in the sense that it makes me want to write, and satisfies my desire to put thoughts into words “out there”, not just holding them to myself. The format of a blog is perfect for me.
There are a lot of better-constructed, eloquent, and compelling blogs. I’ve read a few. I saw one recently about what it might be like if you only had 37 days to live. The blog is beautiful to look at, lots of interesting links, photos, poetry, true living-in-the-moment stuff. Why waste time on ugliness if you are going to die tomorrow, right? Another blog, by a young lady I know, is incredibly perceptive and descriptive. Her entries are short, but elegant, and you are left with images that touch your heart. I hope that one day she is able to channel that writing into some career so she can do what she enjoys and make money. And another I’ve seen recently is about the pain, daily, of losing someone you love to cancer. The first blogs I really followed though were written either by my son, Stephen, when he biked from Oregon to Maryland in summer 2007 or by the people he met on that trip who also kept blogs of their journeys – travel blogs – and I loved them immensely.
My blog is not any of these, and I have had moments of feeling inadequacy, knowing that I lose people because of these failings. I wish I were more creative, concise, and exciting. But those things are not “me”. And my life is interesting enough. It leads me to the question of what I am writing for.
In my 20s I spent the better part of 10 years in therapy. I was in a PhD program for clinical psychology at the time, so I could chalk it up to training. Indeed, 1 year of group therapy, and 1 of individual, was required for graduation. But I had way more than 2 years of therapy. I needed way more than 2 years. I’m not going to review my early childhood traumas here, nor discuss my first marriage, or even my current (second) marriage for that matter. Suffice it to say there was plenty of fuel for the fire. I never did get that PhD by the way, I quit after my Master’s and the coursework for the PhD were done. I needed to do my dissertation yet, which is not a small thing. But, David was little and I realized that more than anything I wanted to be a stay-at-home mom, and so I dropped out.
The one thing that I would say my therapist and I agreed on at the end of that first long therapy run (I’ve had more therapy since then, around the time of my divorce), was that I hadn’t really dealt with how my disability affected me. I would treat it then as a given, like having brown eyes and hair. And for the most part I have lived that way all these years. But the truth is, that it really has made a difference in who I am. And the even clearer truth is that it took me over 30 years of living this life to really realize it. 10 years ago I was beginning to understand this, and now … well, I’m beginning to write.
My disability has influenced so many parts of my life, it’s hard to know where to begin. I believe I’m tougher than most women, and have more patience. I have to gloss over some of the little irritations. Take last night for example. I had my book club – a great discussion about a book I generally didn’t like, but do not regret reading for a second. It was a very lively meeting and I thoroughly enjoyed myself. The meeting was at a house 3 doors down from my house. I say DOWN because it was literally down a hill too steep for me to push my chair down or up. One woman was stopping by before the meeting, so I arranged a push down from her. It took 2 people to push me back up. I could have driven my car there, parking in the driveway, totally independent. But isn’t that ridiculous? To drive 3 houses down? On the other hand, how many people do you know that need 2 people to accompany them home a full distance of 3 houses? Or that have to pre –arrange transportation by walking 3 houses? Oh, the ladies in my group were more than willing to help, and I had more helpers than I needed. I actually had 3 people walking down with me, and 3 willing to walk up as well. Nice to know I am not lacking in friends. But a very small part of this made me feel like a child who can’t cross the street without holding an adult’s hand. Emphasize very small please. This isn’t really the same. But it is different from what most adults have to do. It’s a small irritation, that would have been forgotten already if not for this blog. I don’t really mind this sort of stuff, I long ago started to be grateful when people held the door for me. But not all people with disabilities are like this. And I know a lot of temporarily-able-bodied people have trouble with accepting help too.
I think that for any given day I can come up with at least 3 little, little things like this, where some small item or some small behavior is just a bit different. And any one of these by themselves would be nothing, but all together, it paints a different picture. Today’s 3 things – 1) asking the electrician to close the window he opened, not because it was cold but because I couldn’t reach it later, 2) feeling annoyed that I have to hire someone to patch walls that I do believe I could do if I could reach them and 3) arriving early at a cooking class/wine dinner to get seating because I knew if I didn’t – all the spots that I could “park” at would be taken and I’d end up rearranging the whole room.
I believe some would say I’m feeling sorry for myself because I’m talking about all my hardships. I won’t deny that I have days like that, rare but not unheard of. But mostly I’m too adjusted to this life, and cool headed to bother with feeling sorry for myself. Life is too short, just get on with it. I do have days when the nuisances I have to deal with make me angry too. If you had known me years ago you’d have seen both more anger and more self pity. We soften as we age, I think. If anything, I suspect my emotions related to my disability are a bit blunted now. A better accusation might be that I’m rather self centered, and I’d say again – guilty as charged. But how else do I write this kind of thesis?
So, why am I writing? I suppose it’s a bit of therapy. I’m putting together my reflections on what being a victim of a ridiculous violent act is like, and of what it feels like to have a broken body – one that is not dying, but doesn’t work quite right either.
And who am I writing for? That is something that I hope this blog in time will help me answer. I’m going to keep writing, as close to daily as I possibly can, even if the entry is short and written at 11:50 PM. And with time, I know that themes will come up. Some have already – equipment, and aches and pains.
I could be writing something for rehabilitation staff, on how living with paraplegia feels. Or perhaps what will emerge will be stories to encourage others with disabilities to explore more, and accept less mediocrity. I could see writings to the general public to increase awareness, and tolerance. Or maybe I just want to reach my sons to explain who I am.
Perhaps there is a book in me! Maybe articles in disability magazines, or maybe mainstream ones? At this point, only people who like to read are going to stay with me, I recognize that my blog posts are long. I’m torn between writing less to hold onto more people, and writing as much as my heart desires. If I were a better writer, I might be able to make the posts shorter but convey the same message. I don’t pretend to have excellent literary skills.
Over the past 2 weeks, I have felt like an addict needing a fix, wanting to get back to my writing, and getting in a bad mood because I couldn’t. Dozens of topics came to mind (especially as I was trying to fall asleep) – Choosing a car, Having kids, Wheelchair dancing, Scars, $ and Time, Seating, Parking, Having a housekeeper….. The most clear point is that this matters to me!
There’s so much material there! Some mundane stuff, some serious. I will never lack for a topic. What I worry that I’ll lack is time. I’m not ill, not dying. I don’t have a job, or kids at home. At the moment I’m not consistently doing volunteer work. But somehow, I never seem to have free time. The way my life is constructed now there are always chores, laundry, something to fix on the house, dinner to make, plants to take care of, not to mention cats. I handle our finances. When we plan vacations, I do the lion’s share of the work. My life is “full”. And then on top, we get visitors, or even larger home projects (this electrical one is finally essentially done as of today, it’s been as complicated as a kitchen remodel).
As I’ve thought about how important writing is becoming to me, I’ve also had to think about how I’m going to allocate the time for it. I would like to spend 4 hours each day writing, and this is going to mean some changes around my home. Less time for reading, ok, no problem. Some tasks won’t get done as quickly. So what if the eaves of the house aren’t painted in June, but in September instead. I don’t have to cook dinner every day. There will be time. I will create time.
You see, while Jim’s mom was here – he went to work every day as usual, including going to the gym after work some days, because it was easy to see that these things have value and are not to be put off. He could do this because I was here, and his mom wasn’t alone. If I’d been away, or didn’t exist, he’d be more conscientious about getting home earlier. I’m not putting Jim down, we talked about this before she arrived and agreed it was ok. But as the week of her visit wore on, I realized that while she was here I could still do the chores, laundry and grocery shopping – again because you could see their value - but the one thing I really felt like I couldn’t do was write. Our lives were not set up where my writing carried any importance, it’s been hobby or entertainment – fluff in my life. And at the end of the week I was drained.
To be able to write daily, I have to make a commitment, and say that my writing is important - even if it’s only important to me. For all I know, in six months I’ll be done with this, and it won’t go any further than the blog itself. In the meantime, I’m going to write. My plan is to write daily for as long as I enjoy it, and hope that in time it will become more clear to me who I am writing for, and what my goals are. In the meantime I believe it will be a therapeutic activity for me, if nothing else. It feels important, and when I write one day I sleep better that night. I am going to think of these posts as rough drafts for a future project that isn’t yet focused.
Some updates – my wrist is doing well, surprisingly well. I think I respond well to anti-inflammatories. Next week I see my rehab doc and hand surgeon. I stopped taking the meds yesterday so that my wrist will be at its usual inflamed condition when I see the docs.
The Abilities Expo is tomorrow and I’m so excited! I’ve been hearing great things about some new rims that sound much easier to grip and push.
Struggling with cat care again – Jasper’s vomiting hasn’t gotten better with the new diet, so he’s on daily medication (Prednisone) and that is helping a lot, but pilling him is NOT easy – especially when Jim is away. I’ve had to hire help a few days this week. At first he fought so much I didn’t want to ask neighbors for help. Now, it’s easier, so next time Jim travels I may ask someone local, maybe the kid across the street, to help me. It would be nice to be able to do this alone, but that may take a while yet. For me to pill him I have to get him on my lap, and so far I haven’t figured out how to do this.
Jim and I are planning our next cruise – likely to be spring or fall 2011. We’re looking at the listings just coming out for next year. Rome and the Greek Islands this time!
It’s amazing how long this electrical project has taken. Today they essentially finished – only one outlet left to replace (the one they brought today was defective) and one dimmer switch got broken today. The work passed inspection today, yeah! I still have walls to patch in 6 places, which was to happen yesterday – but the handyman called to cancel the appointment – a friend in the hospital. Yesterday I had my first experience blowing a kitchen circuit. I have a new panel, why did it happen? Well, the fridge, lights, microwave and toaster oven are on the same circuit, and all were running. So, they fixed that today too, only another $350. The good news was, that although alone, I could go outside and flip the breaker myself and reset it – woohoo!
So, although I was not writing, that doesn’t mean I was not thinking – about what this blog means to me, who I am writing for, or who I want to reach (if anyone), what the best format is, and how much time I want to devote to it. I have come up with some partial answers, and I believe they will be enough, for now.
About a week after getting back from my vacation I figured out how to attach an analytics program to my blog, so I can now see how many visitors I get, and some basics about them – New or returning?, How many pages viewed?, Where do they live? – which also includes some rather useless facts for my purposes like What kind of internet connection they have! I can’t see individual addresses, so I can’t really tell who is or isn’t reading my blog. But I realized that it doesn’t matter! I can tell I have some regular readers, and that is enough.
10 years ago I first started thinking about, talking about, attempting writing. I didn’t get very far. I’d write an outline, or come up with some theme for a book. I couldn’t get a grip on what I wanted to say. I joined a writer’s group for a short time, but was frustrated because it felt like the sole purpose of the group was to tear apart someone’s writing. Perhaps I had just picked the wrong group, one that was too critical and not supportive enough. I didn’t contribute much, either my own writing or in comments to others. I didn’t fit in with them, for whatever reason. Perhaps I should have looked for another group then, but my life was so “busy”. So, I dabbled on my own, writing letters that I never intended to send – saying things I would never have the courage to say, journal entries, but nothing consistent. Keeping everything to myself, I had no feedback, and I found it harder to maintain the self-discipline needed to write. And then the shit hit the fan, got divorced, moved across the country. I would say I’ve only started feeling settled again since 2006.
Enter this blog, and though I still don’t get a lot of feedback, nonetheless because of the analytics program, I know I have readers. Voluntary readers! People who come back ONLY because they want to, not because they have to listen in a class, or to read my work so that I will read theirs. It’s an incredible feeling to know that someone reads your work because they enjoy it, not necessarily because it’s the best writing in the world, or because they know it’ll make me feel better (though I do know that personal friends care about my feelings and may be more interested just because they know me). All the same, knowing that on any given day someone will look to see if I have something new, makes me feel like writing more. What more reinforcement could anyone want or need? The blog has been working for me, in the sense that it makes me want to write, and satisfies my desire to put thoughts into words “out there”, not just holding them to myself. The format of a blog is perfect for me.
There are a lot of better-constructed, eloquent, and compelling blogs. I’ve read a few. I saw one recently about what it might be like if you only had 37 days to live. The blog is beautiful to look at, lots of interesting links, photos, poetry, true living-in-the-moment stuff. Why waste time on ugliness if you are going to die tomorrow, right? Another blog, by a young lady I know, is incredibly perceptive and descriptive. Her entries are short, but elegant, and you are left with images that touch your heart. I hope that one day she is able to channel that writing into some career so she can do what she enjoys and make money. And another I’ve seen recently is about the pain, daily, of losing someone you love to cancer. The first blogs I really followed though were written either by my son, Stephen, when he biked from Oregon to Maryland in summer 2007 or by the people he met on that trip who also kept blogs of their journeys – travel blogs – and I loved them immensely.
My blog is not any of these, and I have had moments of feeling inadequacy, knowing that I lose people because of these failings. I wish I were more creative, concise, and exciting. But those things are not “me”. And my life is interesting enough. It leads me to the question of what I am writing for.
In my 20s I spent the better part of 10 years in therapy. I was in a PhD program for clinical psychology at the time, so I could chalk it up to training. Indeed, 1 year of group therapy, and 1 of individual, was required for graduation. But I had way more than 2 years of therapy. I needed way more than 2 years. I’m not going to review my early childhood traumas here, nor discuss my first marriage, or even my current (second) marriage for that matter. Suffice it to say there was plenty of fuel for the fire. I never did get that PhD by the way, I quit after my Master’s and the coursework for the PhD were done. I needed to do my dissertation yet, which is not a small thing. But, David was little and I realized that more than anything I wanted to be a stay-at-home mom, and so I dropped out.
The one thing that I would say my therapist and I agreed on at the end of that first long therapy run (I’ve had more therapy since then, around the time of my divorce), was that I hadn’t really dealt with how my disability affected me. I would treat it then as a given, like having brown eyes and hair. And for the most part I have lived that way all these years. But the truth is, that it really has made a difference in who I am. And the even clearer truth is that it took me over 30 years of living this life to really realize it. 10 years ago I was beginning to understand this, and now … well, I’m beginning to write.
My disability has influenced so many parts of my life, it’s hard to know where to begin. I believe I’m tougher than most women, and have more patience. I have to gloss over some of the little irritations. Take last night for example. I had my book club – a great discussion about a book I generally didn’t like, but do not regret reading for a second. It was a very lively meeting and I thoroughly enjoyed myself. The meeting was at a house 3 doors down from my house. I say DOWN because it was literally down a hill too steep for me to push my chair down or up. One woman was stopping by before the meeting, so I arranged a push down from her. It took 2 people to push me back up. I could have driven my car there, parking in the driveway, totally independent. But isn’t that ridiculous? To drive 3 houses down? On the other hand, how many people do you know that need 2 people to accompany them home a full distance of 3 houses? Or that have to pre –arrange transportation by walking 3 houses? Oh, the ladies in my group were more than willing to help, and I had more helpers than I needed. I actually had 3 people walking down with me, and 3 willing to walk up as well. Nice to know I am not lacking in friends. But a very small part of this made me feel like a child who can’t cross the street without holding an adult’s hand. Emphasize very small please. This isn’t really the same. But it is different from what most adults have to do. It’s a small irritation, that would have been forgotten already if not for this blog. I don’t really mind this sort of stuff, I long ago started to be grateful when people held the door for me. But not all people with disabilities are like this. And I know a lot of temporarily-able-bodied people have trouble with accepting help too.
I think that for any given day I can come up with at least 3 little, little things like this, where some small item or some small behavior is just a bit different. And any one of these by themselves would be nothing, but all together, it paints a different picture. Today’s 3 things – 1) asking the electrician to close the window he opened, not because it was cold but because I couldn’t reach it later, 2) feeling annoyed that I have to hire someone to patch walls that I do believe I could do if I could reach them and 3) arriving early at a cooking class/wine dinner to get seating because I knew if I didn’t – all the spots that I could “park” at would be taken and I’d end up rearranging the whole room.
I believe some would say I’m feeling sorry for myself because I’m talking about all my hardships. I won’t deny that I have days like that, rare but not unheard of. But mostly I’m too adjusted to this life, and cool headed to bother with feeling sorry for myself. Life is too short, just get on with it. I do have days when the nuisances I have to deal with make me angry too. If you had known me years ago you’d have seen both more anger and more self pity. We soften as we age, I think. If anything, I suspect my emotions related to my disability are a bit blunted now. A better accusation might be that I’m rather self centered, and I’d say again – guilty as charged. But how else do I write this kind of thesis?
So, why am I writing? I suppose it’s a bit of therapy. I’m putting together my reflections on what being a victim of a ridiculous violent act is like, and of what it feels like to have a broken body – one that is not dying, but doesn’t work quite right either.
And who am I writing for? That is something that I hope this blog in time will help me answer. I’m going to keep writing, as close to daily as I possibly can, even if the entry is short and written at 11:50 PM. And with time, I know that themes will come up. Some have already – equipment, and aches and pains.
I could be writing something for rehabilitation staff, on how living with paraplegia feels. Or perhaps what will emerge will be stories to encourage others with disabilities to explore more, and accept less mediocrity. I could see writings to the general public to increase awareness, and tolerance. Or maybe I just want to reach my sons to explain who I am.
Perhaps there is a book in me! Maybe articles in disability magazines, or maybe mainstream ones? At this point, only people who like to read are going to stay with me, I recognize that my blog posts are long. I’m torn between writing less to hold onto more people, and writing as much as my heart desires. If I were a better writer, I might be able to make the posts shorter but convey the same message. I don’t pretend to have excellent literary skills.
Over the past 2 weeks, I have felt like an addict needing a fix, wanting to get back to my writing, and getting in a bad mood because I couldn’t. Dozens of topics came to mind (especially as I was trying to fall asleep) – Choosing a car, Having kids, Wheelchair dancing, Scars, $ and Time, Seating, Parking, Having a housekeeper….. The most clear point is that this matters to me!
There’s so much material there! Some mundane stuff, some serious. I will never lack for a topic. What I worry that I’ll lack is time. I’m not ill, not dying. I don’t have a job, or kids at home. At the moment I’m not consistently doing volunteer work. But somehow, I never seem to have free time. The way my life is constructed now there are always chores, laundry, something to fix on the house, dinner to make, plants to take care of, not to mention cats. I handle our finances. When we plan vacations, I do the lion’s share of the work. My life is “full”. And then on top, we get visitors, or even larger home projects (this electrical one is finally essentially done as of today, it’s been as complicated as a kitchen remodel).
As I’ve thought about how important writing is becoming to me, I’ve also had to think about how I’m going to allocate the time for it. I would like to spend 4 hours each day writing, and this is going to mean some changes around my home. Less time for reading, ok, no problem. Some tasks won’t get done as quickly. So what if the eaves of the house aren’t painted in June, but in September instead. I don’t have to cook dinner every day. There will be time. I will create time.
You see, while Jim’s mom was here – he went to work every day as usual, including going to the gym after work some days, because it was easy to see that these things have value and are not to be put off. He could do this because I was here, and his mom wasn’t alone. If I’d been away, or didn’t exist, he’d be more conscientious about getting home earlier. I’m not putting Jim down, we talked about this before she arrived and agreed it was ok. But as the week of her visit wore on, I realized that while she was here I could still do the chores, laundry and grocery shopping – again because you could see their value - but the one thing I really felt like I couldn’t do was write. Our lives were not set up where my writing carried any importance, it’s been hobby or entertainment – fluff in my life. And at the end of the week I was drained.
To be able to write daily, I have to make a commitment, and say that my writing is important - even if it’s only important to me. For all I know, in six months I’ll be done with this, and it won’t go any further than the blog itself. In the meantime, I’m going to write. My plan is to write daily for as long as I enjoy it, and hope that in time it will become more clear to me who I am writing for, and what my goals are. In the meantime I believe it will be a therapeutic activity for me, if nothing else. It feels important, and when I write one day I sleep better that night. I am going to think of these posts as rough drafts for a future project that isn’t yet focused.
Some updates – my wrist is doing well, surprisingly well. I think I respond well to anti-inflammatories. Next week I see my rehab doc and hand surgeon. I stopped taking the meds yesterday so that my wrist will be at its usual inflamed condition when I see the docs.
The Abilities Expo is tomorrow and I’m so excited! I’ve been hearing great things about some new rims that sound much easier to grip and push.
Struggling with cat care again – Jasper’s vomiting hasn’t gotten better with the new diet, so he’s on daily medication (Prednisone) and that is helping a lot, but pilling him is NOT easy – especially when Jim is away. I’ve had to hire help a few days this week. At first he fought so much I didn’t want to ask neighbors for help. Now, it’s easier, so next time Jim travels I may ask someone local, maybe the kid across the street, to help me. It would be nice to be able to do this alone, but that may take a while yet. For me to pill him I have to get him on my lap, and so far I haven’t figured out how to do this.
Jim and I are planning our next cruise – likely to be spring or fall 2011. We’re looking at the listings just coming out for next year. Rome and the Greek Islands this time!
It’s amazing how long this electrical project has taken. Today they essentially finished – only one outlet left to replace (the one they brought today was defective) and one dimmer switch got broken today. The work passed inspection today, yeah! I still have walls to patch in 6 places, which was to happen yesterday – but the handyman called to cancel the appointment – a friend in the hospital. Yesterday I had my first experience blowing a kitchen circuit. I have a new panel, why did it happen? Well, the fridge, lights, microwave and toaster oven are on the same circuit, and all were running. So, they fixed that today too, only another $350. The good news was, that although alone, I could go outside and flip the breaker myself and reset it – woohoo!
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