Living with ALS, I take pride in staying ahead of the game as best as I can. It is not an easy task. ALS throws a nasty curve ball. Adaptation is the name of the game. But what if you don’t always have the solution?
This morning, I had my power wheelchair picked up to have some work done on it. I am reliant on this device to get around. I can barely shuffle maybe 50 feet with assistance. So, basically, I am stuck in my recliner. The problem is that I do not have a backup to the pwc. Planning for the inevitable, I ordered my pwc well before it was necessary. I did not have a manual wheelchair in between. Naturally, it got me thinking.
ALS traps into bonds. Bonds with medication. Technology. Our caregivers. Don’t get me wrong. All are greatly appreciated. But we are stuck here. Slaves to this disease. Even when everything is clicking, ALS has its hold.
I am lucky to have access to all the assistance that I need. Unfortunately, that is not true for many. That is what plagues my mind. Can you imagine being stuck in your bed because you can’t move your body and your bed is not comfortable? You can’t leave your home because you don’t have a wheelchair. You have a wheelchair, but you don’t have a vehicle to transport it. You can’t afford or have access to public transportation because you have limited income.
Imagine not being able to communicate effectively because you can’t speak and can’t get a speech generating device. You have an itch driving you crazy and cannot move or tell anyone to help you. You’re just stuck there hoping it passes quickly.
Imagine all of this happening and it only gets worse. Then imagine being stuck in a body that has failed you. And all you can do is wait to die. This is ALS for many good people.