“My face is gray, it’s actually green/gray!” I gasped.
“I know,” Linda snapped, “Now can you make to the (wheel)chair?”
“You guys always said my face turned a greenish but..arrhrhh...”
This was followed by Linda pushing me into the bedroom, dragging my body onto the bed, setting up the oxygen and staying with me the 40 minutes until I no longer felt that invisible men were systematically stomping on my chest. I can tell you it is quite a different thing being told that you have a “greenish” face and actually looking at your fact and seeing that it has a colour different to the rest of your body, one that resembles a bad school cafeteria stew. Last night’s experience summed up the nature of my illness; at times almost cartoonish; except it hurts too much to laugh, certainly horrific, except it hurts too much to scream: random, uncontrollable, debilitating, dangerous, painful, unknown.
That is my lead into why I am getting a manual wheelchair and why anyone else in my situation probably should not (any why I hope that the person at our insurance evaluating my claim doesn’t read this). Okay, you be the physiotherapist: You have a patient who has gone from an elite athlete endurance level to falling down and losing consciousness after even minimal exertion (like walking two blocks). The condition worsens during the course of the day until even walking from room to room can create a fall and prolonged unresponsive state. She evidences extreme fatigue over simple daily tasks to the point of fatigue paralysis. She sleeps at least 11 hours to 16 hours a day and requires oxygen to supplement either a heart or other deficiency in providing oxygen to her body and brain. It is unknown whether it is one or more conditions. It is unknown whether she will continue the accelerated decline. While different observational tests have show various heart abnormalities as symptoms, the cause is unknown, even the origin be it heart, neurology, or elsewhere is yet unknown. It will likely take at least a year to complete the testing. She gets to put in one claim every five years: how does she get around? As Linda said, “I would get a power wheelchair.” And I replied, “And I would want you to.”
Every expert including two different hospitals say a manual wheelchair is not the “best” solution (or even a good solution); if I wheel on flats my heart rate is 110 bpm, on minor slopes with stops it is 120-130 bpm (this is compared to 130+ bpm for just standing for 2 minutes). An expert on wheelchair efficiency told me that wheelchairs use a smaller muscle group and can be less efficient, also that if I am fainting and need to carry oxygen, and considering the long term a motorized wheelchair is safer, less risky and more long term solution.
Yesterday in discussion with my occupational therapist, she suggested that I try meditation as a coping skill to help me “accept where I am.” Actually, I told her, I am a person that feels better by DOING something. “Often,” she responded, “the secret of life is in BEING not doing.” We glared at each other and moved on.
Even Janet, my physiotherapist said while a power wheelchair at twice the price would get approved right away but she has tried some creative writing since any adjuster should look at “heart” and “manual wheelchair” and go, “Huh?” So I should be able to come up with some clear and precise reasons why I “need” a manual wheelchair, reasons anyone can understand. I’ve been thinking about it for weeks so let’s give it a shot.
I don’t do things because they are easy, I do them because I feel that the outcome and even the process itself is worth doing. We don’t have a car, and part of the reason I used to walk places was not only to get there but to have the experience of walking itself.
When I started epee, like the many physical (and failed projects) before it; from training to run a 90+ mile ultramarathon in Africa to attempting to qualify for the marathon for the Commonwealth Games. I put in the hours, I pushed myself every single time to the limit NOT because I thought I had a realistic chance of being the best. I did it because I believed that TRYING to be the best was better than not trying at all. And because I just don’t seem smart enough to aim for “middle of the pack” or “acceptable levels.” I have to say that this is not a particularly new trait (when I was 12, after learning to use a chainsaw, I decided to spend the rest of the day chopping down the next tree with an axe), if something has a 90% failure rate, that tends to make me MORE interested not less. And in many ways my life consists of heaps of failures. And in other way, my life consists of the meaning I get that struggling for a dream, an improbability gives me and through that I have achieved more in various fields by trying and failing than most have by sticking close to the edge of metaphorical pool (still working on that universal prime number generator, yes, yes, I know it's impossible, call back again next year).
So obstacles aren’t a threat to me since overcoming them is pretty much a way of life. When I moved to Canada, an interruption in my therapy about my sexual abuse, physical and other threats due to homophobia in the UK as well as a toxic boss who turned abusive had manifested themselves into a fear of men, as well as a form of agorapobia which meant that at best I couldn’t go more than six blocks from our apartment without being accompanied. Of course, just because I was in such a state did not mean such a state was acceptable to me. So I started to try and walk around. Unfortunately I had several very negative encounters with some local lowlifes and a few stalker guys which didn’t help. But I was determined to try and go outside every day. Now that meant knowing every route to every destination, which streets were the quietest, at what times of day where there would be the fewest people, etc. So I usually had 3-4 different possible routes for each destination depending on how I felt that day. And still some days I was not able to go outside. And sometimes I cried in frustration because I could not go outside. But I tried again the next day. And I started seeing a new therapist to attack it from that end. Ironically toward winter, things started getting better and better, I finally got to the point where I could leave my six block radius, I did not feel fear when a guy approaches to talk to me, I am a-okay! Well, until my body started to self destruct. (still don’t fear guys, but now back to a 3-4 block radius)
Now, if I had a power wheelchair, I could motor anywhere I wanted (as long as the battery lasted) right? From my point of view though, would “I” be going, or would I be the sack o potatoes sitting on the chair. Or rather, why walk when it is easier to take a car? But, Beth, this is your health we are talking about. Ah, well, screw my health. All anyone can tell me about my health is either what I can’t do, or what they don’t know. Can they stop the pain? No. Can they ensure I will have adequate oxygen for the next five minutes? No. Can they slow my heart down to normal? Can they make it so just sitting and breathing doesn’t exhaust me? Can they tell me if this is temporary or life long? Can they tell me when they know what is causing this? Can they tell me if it can be fixed? Can they tell me when I am going to feel good or bad? No. No. No. They can’t. Even sitting in a wheelchair or being in pool doesn’t stop me passing out or needing oxygen. So, for them, a power wheelchair is the safest option (cause the word “safe” is something think of when they think of me?).
There is a problem. I don’t have a life, I don’t have a goal. I don’t have a job, I don’t have a hobby, I don’t have socialization, I don’t even have control of when I wake up and if I can brush my teeth standing or sitting. So while I am waiting, with only medical appointments on my calendar, what is my life? I don’t know. So how do I know? By making it: by finding out all over again, what are my exact limitations and how much can those be altered or changed? A friend with AIDS talked about “living with the monster in the house”, and I’ve soon found out that you kick the monster, it kicks back, and HARD. If I try and work longer and don’t get my 11-12 hours sleep, I lose a day. If I push myself physically for several hours instead of one, I lose two days. But, then, like everything in life, there is a bit of wiggle room. How far can I wheel before I need to take a break? What happens if I hook up the oxygen AS I start some exertion, does that help?
So when I figure out how to wheel down to the local video store, and take the bus back to home. That is something I have accomplished, something I can do, something I am confidant, evaluating my condition that day, that I can achieve (yes there are a lot of “I”s in that sentence but I haven’t noticed a lot of “team” in “breathing”). And each time, I can play a little more, getting a little faster on the downhill, shooting past people on sidewalks as I use my biking gloved hands as friction steering. Figuring out how to get more power and less energy. And sitting at the bus stop looking up the hill that I cannot, AS YET, wheel up, I can go through my mind all the possibilities, ‘what if I took this side street?’, ‘what if I stopped here?’. I am rewriting the limitations of my body into my body.
When we did the hours and hours of testing and ordering for the wheelchair I turned down “frog legs” (front wheel casters with built in super shock absorbers that absorb any bump), because I wanted to know what surface I was riding on without looking, I wanted the vibrations of the frame of the wheelchair to become an extension of my nerve endings. And I wanted a reason to get up in the morning, a new challenge: the sport of “What can Beth do?” and “Where can Beth go?” and to build new muscles and to get sore and to have toned arms and to turn getting to where I want to go into the challenge and sport that I no longer have in my life.
So I have ordered an ultra-lightweight titanium rigid wheelchair from ti-lite. They would ask, “Do you want a titanium axel casing?” and I would say, “Yes, those ounces might mean another month if I deteriorate.” “Do you want arm rests?” – “No,” I’d say, “that could be two months if I deteriorate.”
Linda pulled me aside, “Stop saying things like that, you are freaking them out and they will MAKE you get a power wheelchair.”
“Just being realistic,” I said, but apparently athletes/outdoor survivalist brain and physiotherapist brain have different thinking patterns.
In a body out of my control, going round the block in the sunshine is my victory, I can feel in the ache of my forearms (and the heart rate that stays under 120-130). I am planning trips combining wheeling and buses with the intensity I used to give to my training schedule. I have things on my calendar most days that have nothing to do with medical exams or doctor’s appointments. I have new places to go, I have new journeys to try. I have the excitement of finding out what is possible and what is not (while carrying a cell phone with 911 preprogrammed) and then trying to figure out how to make the impossible possible. I am watching videos of wheelchair basketball and Wheelchair Tango and thinking, “Okay, what if I wear the oxygen while playing? No, they will crash into that, that won’t work.” I am creating a new pattern in my life, one which might be quickly accomplished with a power wheelchair, but I’m greedy; I want all the glory, I want all the joy of making it up the hill, not thanks to a battery driving me up it, but because I managed to find a way that combined my limitations and figured out how to make it work, for me, on my terms. (is anyone out there thinking “driven type” personality?)
I am getting a manual wheelchair because for me, for someone like me, there is a great difference between living, being alive and WANTING to be alive. Because of the nature of my illness/disability it means that while mornings are not so bad, by the time night comes it is usually very bad; continuous pain and dark thoughts (apparently during the fatigue paralysis at night on Saturday, I told Linda that in the morning she needed to take me in the chair to the end of the breakwater so I could throw myself into the rocks and water below while I still might have the strength to do so. I didn’t remember saying that, so she reminded me when the NEXT night, lying in too much pain to sleep, I made the exact same request). So you see, at midnight, I really need something to hold onto, something left that is mine, something to keep me look forward. And honestly, “Tomorrow I’ll push my thumb forward till I reach the store” doesn’t quite do it for me.
Yes, a manual chair is harder, it has a learning curve, I curse it, it makes me sore in places I wasn’t sure you could get sore, it makes me sweat in places that aren’t supposed to get sweaty (with girls), it challenges me, it frustrates me, it makes me long for going for a run or walk (except that heart rate so fast I’d die thing), I get scared I’ll fall out, I get scared I’ll get too tired to get home. It is a pain, an irritation. But tomorrow I will be going to take a two bus transfer to go out to a mall and meet Linda for lunch. I have a tomorrow. I am going shopping. I am going socializing. I am going wheeling. I hope you get it, because if you don’t I don’t think there is any other way I can explain it. Except that it would have been a lot easier for Terry Fox to drive or have a motorized wheelchair in his run across Canada instead of running on a blistering stump with a prosthetic, it probably would have been better for his health too. But it is the pain of the struggle that gives meaning to the accomplishment. If you don’t get that then...I really don’t recommend childbirth.
13 hours ago