A Chair! A Chair! My Kingdom For A (Wheel)chair!

A Chair, A Chair!  My Kingdom For A [Wheel]chair!
Copyright 2009 Misha BearWoman Metzler

When my doctor told me the physical therapist (PT) recommended only a walker and not an electric wheelchair, I realized I wanted it (in part) as a medal, a badge of honor that would tell all who looked upon me, “Yes. What she has is something serious.” So I wouldn’t have to speak. So that perhaps my decades of having to describe my experiences in intimate detail and justify my position on the public dole would be over. Finally: validation. A visible sign any member of my society could easily observe and understand. No more having to justify my existence. To yet again have to compel understanding and educate others about invisible illness in general, and mine in particular. “See,” the chair would say, “my body really is broken.”

Well, I didn't realize it right away. At first I cried. Not too much, though. I had done most of that after leaving the PT’s office, having heard this news directly first, immediately after the mobility examination for the purpose of determining my functional abilities. He told me a person has to almost not be able to move at all to qualify for a motorized wheelchair. Did it matter I had to take a double dose of pain killers to endure or even to be able to perform the exam? It didn’t appear so. Did it matter what price I would pay later for the extra exertions I did there? Apparently not. Was it relevant that I had to rest between exam components, that I could do a task once but perhaps not 15 times? Seemingly not.

After the sobbing, I mobilized. I called the local disability center and asked about the motorized carts and wheelchairs they had in their lending program. I went there the next day to evaluate them, checked one out, paid their transportation program to deliver it to my home the next week. I spied an ad for a van with a wheelchair lift on the bulletin board, and arranged to see it the day after that. If The System would not help me, I would find ways to help myself. The fiery energy of righteous indignation carried me through my investigations and evaluations of the next several days.

The wheelchair was delivered on Monday. I knew from my “sniff test” at the disability center that it had fragrance on the vinyl of the seat and seatback, and I would have to find out if I could get it “cleaned up” enough so it would not excessively trigger my chemical sensitivities. After four hours in the entry way, I banished the thing to the front patio, where it still sits 12 days later. It took a day and a half to air out the room, and several more days for me to disassemble my denial of the fact it will not work for me.

I have tried detoxifying fragrance from vinyl in the past (mostly from the seats of exercise equipment). The level of contamination I was dealing with here would take two years of airing out with periodic scrubbing, and would still require complete coverage with a heavy duty aluminum foil product and aluminum tape to seal in the remaining fragrance. I might also have to tape up the chassis and other components. Much better if I had a new unit to detox, with its fresh vinyl upholstery, rubber wheels, and new motor. At least those I knew would become increasingly tolerable over time.

I began the process of trying to obtain a motorized wheelchair in early summer, knowing that to be the best time for detoxifying new possessions. The heat, sunlight, and fresh air of the long summer days are the most effective for offgassing chemicals and other toxins from physical objects. Now it is mid fall, and I will have to live with whatever solution I come up with until next summer.

I researched and evaluated the Ford Windstar minivan from the ad I found on the disability center's bulletin board. While the wheelchair lift is an interior one, it is mounted in the rear and is only for an unoccupied chair. I would then have to walk around to the driver’s door to use the vehicle. It does have an automatic transmission, which is the need that led me to start thinking of a replacement vehicle in the first place (my left hip hurts a lot, and driving a stick shift vehicle makes it worse). However, the side doors and hatch take some muscle to close, and the seat adjustments are likewise physically challenging. A limited amount of the carpet had been shampooed four months before, and I estimated it would take a year to a year and a half of airing out for me to tolerate it chemically.

Yesterday, my blessed neighbor came over for our (often) weekly visit for her assistance to me. Rather than helping me organize my physical environment, today the help I asked of her was discussing strategies about resource commitments. One of the topics was about obtaining a wheelchair equipped vehicle, and independent living in general and vis-à-vis that and other transportation options. Through our discussion, it became clear to me the kind of vehicle I would require to prolong my transportation independence would have to be fully equipped for wheelchair use. It would need to include a lift that would accommodate me in a wheelchair, allow for my transfer to the driver’s seat, and an automatic transmission.

The only available vehicle I know of like that is a 1995 Ford van that hasn’t been driven for a year. A 14 year old domestic model? Sorry, America, maintaining transportation independence is not to be had by giving up my standard transmission import for the unreliability of an older model domestic. In discussing prices (that one’s asking price is $7,000), I shared that the most I could realistically afford to borrow would be around $5,000 on a 5-year term. To get a loan, the proposed vehicle would have to be 10 years old or less. The required payment would also put a significant strain on my budget, removing most if not all of my “wiggle” room and requiring other items to be given up. One of these items would be my broadband service, which improves my quality of life on a daily basis more than I think being able to drive myself somewhere would.

It became increasingly clear to me the kind of vehicle I would need to extend my personal transportation independence is outside my financial ability to obtain. My best option at this time appears to be to hire transportation as needed. My local disability center has a transportation service with at least two wheelchair lift equipped vans. Although the government agency that offers discount transportation vouchers to low-income disabled persons in my area does not serve my town (ah, yet another of those gaps in which I get to reside), the savings I would realize from not putting gas in my truck could pay for a trip a month. That could take care of my usual medical appointment most months. And if I get to the point where I cannot drive at all, I can always sell the truck. Besides the income from the sale, I would no longer have to pay for insurance, tags, and upkeep. That could cover a second transportation trip per month.

After the discussion, I came to some conclusions. I would stop looking for a replacement vehicle. I would return the smelly loaner wheelchair. I would get the walker recommended by the physical therapist, one wide enough and sturdy enough to accommodate my weight, one with four wheels, hand brakes, and a fold-down seat. I would continue to ask friends and neighbors to shop for me. The next time I went in for a wheelchair evaluation, I would arrange a ride and go at one of my worst times rather than at one of my best, though I fear the amount of pain I am likely to have to endure for that.

When I first thought of what it would be like to no longer be able to drive my existing vehicle, I felt like I would be a prisoner in my own home. Unable to leave or go somewhere if or when I wanted or needed to. In some ways I already am such a prisoner, though it is mainly by choice. When I travel anywhere, I get exposed to chemicals that make me sicker for many days, and the physical exertions increase my pain for several days as well. Mostly I choose to stay home so as to avoid those exposures and that pain. I have a better quality of life and more capacities by staying here.

Here in my home, I have my infrastructure basics. I have my stock of food, my bathroom, my wonderful soft bed, and all of it under the same roof that does not leak. I have air conditioning in the summer (though the unit is dying) and heating in the winter. I have my phone, the internet, movies and games. I have my Books on Tape, my music, and my writing.  I have wonderful friends who care about me, some of whom help me out in practical ways from time to time.

From here I can look out at the stars and remember they are suns circled by other worlds. Listen to my books of science fiction and think of the inhabitants other writers create for those worlds. Remember the offer the snake made to The Little Prince. And from here I can remember that The Little Prince is not the only one who can chose to travel to those other worlds.

2009 October 24