Why I don’t have a wheelchair, and it’s not what you think

October 23, 2014

The other day I wrote about the freedom of a wheelchair. I wrote about how using wheelchairs allowed me to travel last weekend when I otherwise wouldn’t have been able to, and they also let me get out of the hotel room and have a little bit of fun. But last weekend wasn’t the first time I used a wheelchair, and I doubt it will be the last. So why don’t I have one of my own?

For a long time I didn’t need a wheelchair. It was rare that I had trouble walking, and when I did, I could usually manage to “power through.” As the pain and disability got worse, I occasionally had a friend push me in a chair at the mall, or use a chair in an airport. It wasn’t often, but I did it. But I told myself those were aberrations. I was feeling stubborn. I didn’t want to need a wheelchair.

More recently, as I found myself telling people more often that “I can’t leave my apartment” or “I can’t walk” I realized that the real limitation wasn’t my ability to walk, but my inability to find an alternative. Due to joint pain and instability in my wrists, I can’t use a cane, crutches, or a walker. I can’t use my hands to lean on anything. So when the pain in my feet or knees is especially bad, I’m stuck. I spend days at a time sitting on the couch or lying in bed, and hobbling to the bathroom or kitchen only when I truly have to. I can’t leave my apartment because it involves too much walking. The stubbornness has dissolved as I have been become a prisoner in my own home. But what if I could leave without walking?

Most of my friends think I don’t have a wheelchair because I don’t need one. Some others think it’s because I refuse to use one. They’re both wrong. The reason is sadly simple: money. I can’t afford it.

Let’s say I get a low-end electric wheelchair for $1500. That’s a lot of money, especially for something I wouldn’t use every 20120809_220808day, but I think it would be worth it and I could manage to pay for it. Unfortunately, that’s not the only cost. There are many accessories I’m sure I’ll need, even though I don’t know yet what they are (if you do know, please list them in the comments! I’m trying to get an accurate idea, in case I end up doing this at some point.) And I’m guessing there would be repairs and maintenance or the chair.

Now how will get that chair around? I need a van. Let’s forget for a moment about the extra cost for gas on a minivan (I drive a compact car now.) And let’s ignore the extra money for repairs, since I’d have to get a much older car, with many more miles, than what I have now. Let’s just look at the cost of the van itself. After trading in my current car, I’d probably spend about $20,000 for a used wheelchair van.

So that’s $21,500. That’s a lot of money! And as if that weren’t enough, I need to be able to get to the van. Right now, on the bad days, I can’t walk down the long hall from my apartment to the front of my building, or down the walkway from the front door to the sidewalk. And then my car could be parked a couple blocks away. I should really live in an accessible apartment. Those are incredibly hard to find in the Boston area. These are old buildings. The last time I lived in a place that was built post-1930 was 4 apartments and a dozen years ago when I lived on the west coast. In fact, I’ve only ever lived in 2 accessible apartments. 1 was that apartment on the west coast and the other was a place that I lived in for 1 semester in college. That’s it. Everyplace else has had stairs. Newer buildings are accessible. Newer building are also expensive. Not only would I be paying moving costs, but my rent would go through the roof. This is just not an option. More likely, I would need to move to another inaccessible apartment that involved less walking to get to my car. It would need to have parking, though, so my car would be closer. Chances are, I’d be paying my same rent or more. Probably more.

Still, let’s say I could move with just slightly higher rent, plus moving costs, plus the van, and the wheelchair itself. We’re talking approximately $24,000 for a wheelchair that would be incredibly helpful about 10 times per year. (Each time varies between a few hours or a couple weeks.) This just doesn’t make sense.

So for those who’ve wondered why I don’t have a wheelchair, even though there are obviously days that it would be incredibly helpful, that’s why. It’s about the money. Plain and simple. It sucks, but it’s the reality.

Have you had to give up using a wheelchair or other mobility aide because of cost? What’s your experience with wheelchair use? Are my numbers off in any way? Please comment and share your story!

The freedom of a wheelchair

October 21, 2014

Last weekend I went out of town for a family wedding. As regular followers know, traveling has been tough for me recently. I used to travel *a lot*! I visited family out of state at least 4 long weekends per year (2 of those involved flying.) I spent many

Connecticut trees from a train window

Connecticut trees from a train window

weekends and long weekends and sometimes a week in Maine each year. Then I would take a bigger trip each year, either overseas or to the west coast. If I was in town for 2 months, I’d get antsy. But that was before.

In the last year I have left town only once: to go to a family wedding in NY in July. And I was incredibly sick. My gastrointestinal symptoms were severe and the fatigue was terrible. So you can imagine my surprise when this weekend worked out ok, especially since it almost didn’t happen!

Last week I was in horrible pain. My toes were swollen and painful. I can’t use a cane or crutches because of the instability and pain in my wrists. Prescription painkillers barely help and the side effects are terrible. Cannabis takes the edge off, but that’s it. And I can’t use it on a train. Walking was difficult and painful on Monday, it was horrible on Tuesday, and it was nearly impossible on Wednesday. That’s when I started to question if I’d be able to go on this trip. I cried as I thought about missing the wedding of someone I care so much about. But how could I go?

I talked through every possible stage of the trip with my mother, a friend, and myself. All three of us came to the same conclusions. I needed the pain to improve. The train left Friday morning, the wedding was Saturday night. The dew point was set to drop on Friday, which meant I should feel better on Saturday or Sunday, but would that be enough? How would I navigate the train station? How would I even get there?

Thursday came and went, with pain similar to Wednesday’s pain. Thursday night my boyfriend broke up with me. It was not a good day. A neighbor took out my trash for me, since I couldn’t even make it to the basement where the trash bins are kept. I hobbled around my apartment packing. I rested. I hobbled and packed some more. I cried on the phone to my friends about possibly missing the wedding and about the breakup. I ordered a cab just in case I went, since I knew I couldn’t take the subway to the train station in my condition. I was ready for the trip, but would I be going? I oscillated for hours.

Friday morning at 6:30am my alarm went off. I never feel good when I wake up that early, but I ignored those symptoms and focused on the pain. It was still there, but it was better. Was it good enough? I showered. Could I make it? I dressed. It hurt, but not as much. Would it stop me? I packed my CPAP machine and other last-minute items. How bad would it be if the pain got worse again while I was out of town? Halfway through breakfast I finally decided to go.

I hobbled to the street and took a cab to the train station. There, I got a wheelchair and breathed a huge sigh of relief. The red cap took me right to the train and put my suitcase in the overhead rack. When I arrived at my destination, a red cap was waiting with a wheelchair. I was in pain when I arrived, but it wasn’t too bad.

The next day, the pain was worse again. While my family went out and explored a new city none of us had ever visited, I sat in the hotel room. At first, it was relaxing to read a book and rest. But I quickly got stir-crazy. The room didn’t get great light, and I wanted to get out of there. I called the front desk and asked if they had a wheelchair for guests to use, and they did! I called my mother on her cell, and she and my dad came back for me.

A little while later, we were strolling through a farmers market, sitting in a beautiful park, and then enjoying a nice lunch. It wasn’t fancy. It wasn’t the way I would have explored a new city if I was able to walk. It’s not what I would have done 3 years ago. But it felt so good to get out of that hotel room! I was so happy! The wheelchair gave me a kind of freedom I wouldn’t normally have had, even while I lacked the freedom to choose where I went, since I needed my parents to push me.

Thankfully, miraculously, my prediction was pretty accurate. By Saturday night I was up and about at the wedding. I kept most of my standing weight on my other foot and I sat more than I otherwise would have, but I also danced a bit (well, I planted my feet and wiggled my hips, because there’s only so much you can do when you’re in pain.) I walked around and socialized. I enjoyed myself, to my own shock and pleasure.

The next morning I was in pain again, but it wasn’t as bad as in previous days. Again, we borrowed the hotel wheelchair and my parents pushed me a few blocks away to where the entire family was meeting for brunch. We had a wonderful time!

The return trip went well. Again, red caps took me to and from the train in wheelchairs. I took a cab back to my apartment. It was Sunday, and the pain wasn’t too bad, but it was enough that I wasn’t about to wrestle with luggage on the subway. Yesterday, Monday, I woke up with almost no pain. I went out and ran errands. Today I’m fine. The timing sucked, but thankfully it all worked out ok.

But it couldn’t have worked without wheelchairs. I wouldn’t have been able to manage the train stations. And even if I’d made it down there, I would have been miserable and depressed at the wedding after a day of being trapped in a hotel room. I don’t want to need a wheelchair, but I’m so glad to sometimes have the option of using one when I need it!

Do you ever use wheelchairs as an occasional or part-time aide? How do you feel about it?

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