More Dead Than Alive — When I Met A Deadly Ill Young Women
I met a young woman who is deadly ill, this is how she changed my relationship with mortality.
I used to work in a therapy center in Austria for nine months when I was 19 years old. I can definitely say that it changed my life. This therapy center specializes in neurological diseases and traumas. Most of our patients had a stroke and came to us for recovery of their basic skills. But we had all sorts of diseases, such as Guillain-Barré syndrome, Parkinson’s disease, multiple sclerosis, and dementia, just to name a few.
But there was this one case that got stuck in my head.
A young woman, just a few years older than me at that time, suffered from Amyotrophic Lateral Sclerosis, better known as ALS or as the illness Stephen Hawking suffered from.
ALS is a type of fatal motor neuron disease without a cure. Patients normally get this disease when they are between 50 and 70 years old. As it progresses the patient won’t be able to make voluntary movement of arms and legs. Furthermore, the ability to speak, swallow, and breathe will decrease. It normally leads to death within three to five years.
But now there was this woman, way too young to have this disease, on the edge of life. ALS was diagnosed five years ago, according to the statistics, she should be dead by now and she knows that. Our job was to give her as much quality of life as possible and reduce the suffering. It was hard for me to know that someone almost my age would die and there was nothing I could do. It confronts you with your own mortality. It was not easy to handle knowing that she wouldn’t get the chance to make decisions about her future the way I can.
Picking her up in her room to bring her to the next therapy, and she is crying and you need to calm her, but nothing you do works. You can’t even say that everything will be alright because it won’t. Knowing that really stabbed my heart.
But there were good days as well. Days when we had great conversations although it wasn’t always easy to understand her. She told me about the life she had, about her job and her family. She asked so many questions about me and what I wanted to do with my life. I always felt silly when I had no answer to the question about my future, she doesn’t have to answer that question, but I’m sure she could. I could always count on her motivation when I was stressed and she asked me every day, how I am and really meant it, she didn’t just say it as a complimentary phrase like most people do.
Within her 5 weeks at the therapy center, I had the chance to get to know an interesting and caring young woman who was more dead than alive. It was lovely that I met her in a state where she could still interact with me to some extent. But I won’t lie, I sweated through my eyes quite a few times. But the circumstance that I don’t even know how she is or if she is still alive while I write this article breaks my heart.
We should all value our lives more, as long as we can. We never know when reality hits us.
