A day like almost any other. I struggled to get out of bed, but somehow managed to get into the wheelchair. Sometimes I'm not sure myself how it worked at all. It doesn't work for long. The cigarette with the first coffee on the balcony is soon more of a hassle than it's worth. I can just about manage the cough machine. Without it, nothing works in the morning.
I roll to my desk. I work almost exclusively from home. The way to the office is too arduous and often costs me more energy than I can muster. At home I go to the toilet, because the office is not handicapped accessible. On the stair caterpillar, later on my platform lift, into the underground car park. Break. I better not have to go to the toilet again. I'll tell you how I cursed that. Only to be topped by the fact that I only noticed it in the car. After I had climbed from the Alurolli into the driver's seat of my car.
It's practical that you don't tip over to the side in the bucket seats, even without torso muscles. I wonder how many new Audi S4s there are that have been converted to hand throttle. So left hand holds cigarette and steers while right hand directs 354 hp. The only joy of an otherwise arduous journey to work. You can't even rely on the disabled parking spaces in front of the office. It's not enough that there are always assholes standing there who have no business being there. They even start a serious discussion with me about why they park there. I can still understand the motives of suppliers - which neither legitimises parking in a disabled parking space nor makes it any better - but what you have to listen to from some private contemporaries is really crude. Unfortunately, the police never arrived on time. The public order office confirmed in writing that they were aware of the problem, but could do practically nothing. Unfortunately, the underground parking spaces at the office are not wide enough for me to get out of the driver's seat and into my full-carbon wheelchair. I bought it especially for the office because I was able to move the two-kilo wheelchair from the passenger seat to the outside and set it up from the driver's seat. Still.
The joy was short-lived. Soon the necessary aids were to pile up. Bathing without an overhead lift, no way. Sitting on the toilet, no way. And anything like showering - which is only possible on a shower chair in the bathtub anyway - without help from others, impossible. It is an ordinary weekday. Even getting from the wheelchair to the bathtub is difficult. I feel wobbly in my arms. Others use their legs. I only walk with my arms. If at all. Going up the stairs is fine. Backwards, sitting. Looks pathetic dragging my legs behind me, but gets the job done. Down is too tedious. Carry each leg, one at a time, with hands from step to step, sit upright again, lift body up as if in yoga seat, down one step and sit again. Pause. Stressful. I prefer to shimmy down the banister, secretly hoping each time that no one sees me do it. Ridiculous, really. It's not my fault that I look as handicapped as I do. And yet I avoid the situation.
I made it into the bath. Back I fail. The first two times in a row the side plate breaks out of the holder. I am always amazed at the kind of junk that can be sold to customers at horrendous prices as soon as it only has an aid number. The first time I make it back to the bath chair. The second time, I'm stuck somewhere between the bathtub and the wheelchair. The "quick slide over" didn't work. The only thing I can do now is slide to the floor in a halfway controlled manner. Preferably without twisted joints and bones.
My iPhone, faithful companion. What would I do without it? I call a friend who is on his way to me from the office in the city. Meanwhile, I kill time by crawling on a towel over tiles and parquet to the flat door. Break. Now I just have to manage to open the door. Somehow it works out after all. I lean my naked back against the cold wall. And wait. It feels good to wait. To know that I have now done everything that needs to be done. The rest is out of my hands. Others do it for me. But what will I do tomorrow? A solution must be found.
And the "solution" is called a care service. Why? Because ALS is an asshole. Why? Because she pushes me into that corner. Why? Because I haven't found a better solution that I was ready for so far.
