The Tale of an ALS Survivor
Patient progress notes from Dr. Van Houten, my primary physician:
He has lost almost all the function in his legs and arms, and the only way he can eat is actually put his face into the food.
I got very creative when I was tired of other folks feeding me. I had my plate put on a Lazy Susan with the food at the edge of the plate. That way I could spin the plate with my nose and bite at the edge of the plate!
Dr. Van Houten continues:
He is trying to be as independent as possible. He does feel anxious about this but has decided he’s going to make the best of every day of his life now. I offered him hope and encouragement. Advised him that if he needs antidepressant therapy or any other counseling therapy, he is to let me know.
I’m having a real hard time.
The Miracle that I experienced a short time ago with my arms lifting up from my lap and pushing me out of my wheelchair and my walking in a circle has turned into crying and depression. I can’t understand how I could go from having no strength to having a miracle, and then back to spinning a Lazy Susan with my nose just trying to feel some independence.
Antidepressants are the last thing I want to take. I can only move my head and two fingers on my right hand. If I want food, I have to ask for someone to feed it to me. I have no privacy in my life. I have to go to bed and get out of bed thinking about when it’s convenient for my caretaker. I have to be dressed by someone else. It goes on and on and I am so, so tired of it.
I knew how to end it early…
That was one of the saddest days of my life. Just recounting this memory brings tears.
I was amazed by my brief recovery, but I was more frightened now by my steady decline. Mentally, I always had hope, but my body was not listening.
The stress my family was going through made me feel like a
burden. I was feeling lost. There were no answers. just the everyday chores providing me a dignified lifestyle. I was truly thankful to everyone helping. I was just tired, mentally, physically and Spiritually.
I have a deep background in spirituality. I have a story that I made up from all the other stories I’ve heard in my life.
I believe that life continues on. In my story, I come from a world that exists in a different vibration. All the activities in my life make up a certain vibration and That will be my next destination in that world. I am very conscious of all the activities that I have undertaken in this life and I am very happy with them.
So, I didn’t think I would be afraid to take charge in releasing myself from this monster ALS.
The stress of trying to hold it together when you are an inch from crying is no good, I discovered. Sadness was so easy to sink into. Crying was like having a conversation with another part of me that was weary and lost. No hope is deadly. So many times I lost my desire to go on. And that’s probably why I later was able to help others facing this crisis when I joined the EverythingALS.org team.
Valentine’s Day Feb. 2006
As far as I know, a miracle happened to me, but just as fast as it came to me, it was taken from me. I will never get over that experience of going from elation to depression in a matter of minutes.
Mona went to town that day and bought me a strawberry dipped in chocolate, a heart-shaped cookie, and a new sheepskin pad for my wheelchair as Valentine’s Day presents. I was very thankful, but as I spent that day by myself mostly, I concluded that if I can only eat by laying my face on the table and spinning the Lazy Susan with my nose as I bite food off the edge of the plate, and have to be put to bed at a certain time, often begging,” PLEASE, don’t drop me,” and have to be bathed by someone who will also wipe my butt, brush and floss my teeth, get me out of bed at a certain time and dress me before making me breakfast and emptying my urinal as the day moves on, Fuck This, I can’t even light my pipe.
And even as I write this, I’m getting tears in my eyes again, because this isn’t easy. When I think of all of you still dealing with this, it breaks my heart. After all these years, we still don’t know the answer to the question, “Why us?”
After Mona had returned home for a short while, I told her what had been going through my mind when she was away that day.
“I feel like I’m floating down a stream and I’ve lost all control of where it is taking me. I don’t feel like I can fight this. I give up.”
That day was very sad. There were no signs from the medical world that any help was coming. I was totally thankful and still amazed about the prayer circle, but that chemistry didn’t continue.
I had only two ways out of this. Without anyone’s help or permission, I could stop taking in any food or water. I felt that would be the easiest thing to do until I thought about it little more. My family was going to have to bear watching me for a few weeks slowly wither away. I couldn’t do that to them. I know Mona would have helped me, because she could see I was suffering. The most important thing in my life now was making sure Mona was cared for. I thought, “She is healthy and smiling, and I want to do my best to help her keep it that way!!”
My second choice — and Mona was in agreement with my wishes — my sister’s friend would lease me a house in Oregon and then I could apply for the state’s Death With Dignity program.
The Darkest hour of my LIFE. What to DO? Hang On or Hang UP.
The Death with Dignity Act was approved twice by Oregon’s voters and took effect in 1997. The law requires that patients wanting to die must have a life expectancy of less than six months, as determined by two doctors; must be mentally competent and not suffering from impaired judgment resulting from depression or another psychiatric disorder; must make an initial request to the doctor and then wait 15 days before making a written request that is witnessed by two people; and must be advised of all alternatives, such as hospice care and pain management. The doctor then prescribes the drugs but may not administer them.
As long as my tongue could lick the pills off the plate, I would be good To GO.
My biggest worry was how I would respond when my doctor signed the form stating I had only had six months to live. I had to make a life or death decision and I was in no healthy mental state to make that choice.
Postnote: To see what changed my mind, read next week’s post. And for those who have read this blog and have been inspired to help promote research treatments for people with ALS, please consider volunteering with the EverythingALS.org Speech Project at email@example.com
To my Brothers and Sisters suffering from this unthinkable hardship. I know it’s the worst possible path to have to experience. You have every right to weigh your options. Be sure to share your Hopes & Fears with someone who has a Professional capacity to understand your position and can be a sounding board to reflect back to you some insights.
Please reach out. Please.
National Suicide Lifeline 800–273–8255