It is a situation I am fairly sure has happened to everyone on the planet at least once. After a long night of sleep, I woke up and had to pee. Urgently. So, after I swung my legs over the side of the bed, I got into a sitting position, but I was not completely balanced. “This is okay,” I told myself. “I can get into my wheelchair without a problem.” As soon as I attempted the transfer, I knew that I was in trouble. I lost my footing and fell in a heap on the cold but stylish concrete floor of my bedroom.
It was only after I had fallen that I realized that the life alert button that I wear around my neck and use to summon help in situations like this was not working. In a word, I was screwed. Usually, I have other safety precautions in place. I always sleep with my phone next to me in my bed in case I have some kind of emergency in the middle of the night, and I need my caregivers to provide assistance. It has become a habit, or so I thought, to move my phone from my bed to the table next to my bed before I attempt a transfer to my wheelchair. It did not happen on that day. I really don’t know why. My phone was still in my bed and I couldn’t reach it when I was on the floor.
As I thought about the fact that I was eventually going to get hungry, my puppy was going to need to go outside to potty and I didn’t have a caregiver scheduled until later that evening, my panic and anxiety started to mount. Besides, I still had to pee like mad.
Tears of frustration were still spilling down my cheeks about 45 minutes later when I heard my front door open. I had a conversation with a caregiver I had just hired the day before and I happened to mention that I didn’t have anyone to help me out of bed the next day. By the grace of God and her generous heart, she came by to see if I was okay. She was able to call a team of EMTs (they are very familiar with me and my falls and they provide phenomenal support for me.) They were able to lift me back in my wheelchair and other than being a little shook up by the drama of it all, eventually, everything was good.
I can’t say that living in a body that doesn’t always behave is a fun thing, but I learned a long time ago that was just part of my circumstances. Cerebral palsy, and the lack of balance that it causes means that I am going to fall sometimes. And the fact that my phone was not within my reach was a mistake that is entirely mine.
That night I had a seizure. I was diagnosed with epilepsy about six weeks ago and put on anti-seizure medication at that time. Therefore, as naïve as it may sound, I kind of had it in my head that the seizures that make me sleep for hours on end were a thing of the past as long as I took my medication faithfully. Not so. At least not yet. Another caregiver couldn’t wake me up after I had this seizure. She was new and she is young and as a result, everything I had told her to do in that situation went out of the window. When her scheduled shift was over, she just left. She didn’t get me medical help. She didn’t ask anyone else to check on me. When I woke up a few minutes later, she told me that she had other plans and could not help me get out of bed. When I reminded her that I couldn’t move well after a seizure and that another caregiver wasn’t scheduled to work for about ten hours, she said: “Sorry, there is nothing I can do.” She was okay with leaving me helpless in my bed all day. It just so happens that she doesn’t work for me anymore.
The way I see it is that the first scenario was my being helpless because of my circumstances. That is simply part of life. That might frustrate me but It is what it is and I can’t change it. The second scenario made me angry though because that was the helplessness that was imposed on me by someone else. Nobody should be okay with leaving me in a situation where I am helpless, especially not people who come into my house and work for me. I don’t think it is an unreasonable expectation that my caregivers care about my safety and well-being. That pretty much sums up the reasons they are in my life.
Why do I bring all of this up?
Because it is helpful to me to explain the situations in which I can’t stand being helpless. And I should never be made to feel helpless because I can’t stand.