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 one 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 the left hand holds a cigarette and steers, while the right hand directs 354 hp. The only joy on 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 arseholes parked there who have no business being there. They even start serious discussions with me about why they are parking 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 get to hear from some private contemporaries is pretty 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 about it. Unfortunately, the underground car park at the office is not wide enough for me to transfer from the driver's seat to 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 independently and set it up from the driver's seat. Still.
The joy was short-lived. The necessary aids were soon to pile up. Bathing without a ceiling hoist, no way. No sitting on the toilet. Showering at all - only possible on the shower chair in the bath anyway - without assistance, impossible. It's an ordinary weekday. Even getting from the wheelchair to the bath 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 down. It looks pathetic as I drag my legs behind me, but it gets me there. Downstairs is too arduous. Carry each leg, one at a time, from step to step with my hands, sit upright again, lift my body up as if in a yoga position, go down a step and sit down again. Pause. Stressful. I prefer to shimmy down the banisters and secretly hope that no one sees me each time. Ridiculous, really. After all, it's not my fault that I look as disabled as I do. And yet I avoid the situation.
I made it into the bath. I fail back. The first two times in a row, the side plate breaks out of the bracket. I'm always amazed at what kind of junk 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 bath and the wheelchair. The „quick slide over“ didn't work. The only thing I can do now is slide down to the floor in a reasonably controlled manner. Preferably without twisting my 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 arsehole. Why? Because she pushes me into this corner. Why? Because I haven't found a better solution that I've been willing to do so far.
