It's All Too Much

There are some days, or more specifically, some moments in some days, where I just feel like giving up, like crawling into bed and staying there, or curling up in a ball like an armadillo hoping not to get crushed or destroyed by the predatorial nature of life itself. There was an event yesterday which did that to me, where I ended up feeling so bad, so incapable of living my life, that I just wanted to give it all up.

I was supposed to go to a Christmas party last night. Supposed to go. I ended up not going, basically for one reason and one reason alone. I am in a wheelchair. The wheelchair itself is not so much the issue as the concomittent effects of being in a wheelchair.

First, the back story. My friend Mike does not have a ramp at his place. However when he has a party and I can go, he gets a collection of the men there to lift me up his front stairs, wheelchair and all. What this means, however, is that to go to a party at his place, I am compelled to use my manual wheelchair, something which is becoming increasingly difficult. Nonetheless, I can do it.

The second actor in this play is Access Calgary. Their services are excellent, however they have a few guidelines which are of impact to me, the most significant being that their requirement is to pickup a passenger from their front door, help them to the small bus, and on the way home to repeat that process. They are no permitted to lose sight of their bus or the other passengers for safety reasons. In addition they are often required to take multiple passengers, so a bus ride that would normally take a half hour can sometimes take much longer.

On the other hand, Access Calgary provides an additional service called Access Calgary Extra. Due to my special needs, I have access to that service. It pays for a cab, a wheelchair cab, to come and get me, and return me, as they would with any other taxi. That means they can come down into my building's garage and pick me up, rather than having to wait on ths street for me to magically appear outside my front door.

So last night, I was to go to Mike's party in my manual wheelchair. Rather than go through the debate with Access Calgary about where they could pick me up, I opted for Access Calgary Extra, the subsidized cab ride. Early in the day, I call them and booked a cab for 5:00 PM. The party started, theoretically, at 5:15 PM but I needed to arrive late enough that there would be sufficient other men there to help carry me into the house. It's just under an hour from my place to Mike's; he lives in the deep south of the city while I live up in the northwest. There was Saturday night traffic to allow for as well.

At 5:00 PM I was dutifully waiting in my garage, having struggled to get into my manual chair, packing my contributions and present in a bag on the back of the chair, and wheeling myself downstairs through multiple doors with my ever weakening arms. Then I waited. At 5:30 PM, I called the cab company, Associated Cabs, to see what was happening. I was told it was a busy night, that wheelchair cabs are hard to get especially since they work as normal cabs too, and that I was next in line for a ride. I called again at 5:45 PM; same story. At 6:00 PM I gave up and went upstairs to my apartment. At 6:15 PM, Associated Cab called to tell me a cab would be on the way shortly. I told them to forget it, to cancel the cab. I would stay home.

This was not a "cut off my nose to spite my face" situation. It was a very real acceptance on my part of the energy needed to get back downstairs in my manual wheelchair, Furthermore by the time I got to Mike's, which would have been about 7:30 PM, the party would be well underway with my having missed much of it. Finally, I knew that I would have to leave at about 9:00 PM to get home on time for Home Care to assist me in getting to bed. Cabbing for two hours to enjoy 90 minutes of a party just did not make sense.

Where this left me is feeling very defeated, both by the constraints on my life set in place by other people who have no interest in truly helping me live as much as I can, and by the limitations of my own physical self. Plain and simple, I can't do it anymore, whatever it may be. For certain if I am going out, my power wheelchair is now a requirements, not an option.

I also felt very alone last night, a feeling that continues with me today. ALS is an isolating disease. My friends, like Tonny yesterday, try hard to keep me in their social loop. Some do better than others. My children are all far from me now, with Kate being the closest at 2 hours away, held even more away with a new husband and family. The others are out in BC, near where there mother lives. It's easy for them, mostly, to see their mother, for grandchildren to visit grandmother. It's difficult for me since, as they are ready to remind me, I decided to stay in Calgary.

It's easy to see where bitterness is creeping into my psyche as well, the kind of bitterness which will isolate me even more. The constant losses, the perpetual inabilities, the dependency on care givers and friends and family and even strangers, the exhaustion in simple daily living. It all wears me down, grinding me ever smaller, ever diminishing. Nobody wants to be around a person who is bitter and angry. I'm angry. I'm sad. I'm weak. I'm tired. And now I'm even crying. It's all too much.