Oops, I dropped my socks on the floor when I walked toward the closet to put them away. My hand coordination is not so good any more. To pick them up I lean forward so I can hold on to the dresser, as I slowly, slowly bend down and finally get hold of the socks… and slowly I raise myself up. My neck is so weak so I can barely hold my head up as I get up again.
All my movements are slow nowadays and I have to watch all the time so I don’t stumble or fall over. My meals are a funny deal. I sit at the kitchen counter and feed myself through a feeding tube. It actually works quite well. People ask me if I miss eating good food. I don’t care – I only care to stay alive!
I have not been able to talk at all since January 2012. That makes for an interesting life. When people talk around me, I cannot join in. I may hear a person tell about an event, and he may say it happened last Sunday. If I know it was not on Sunday, it was on Saturday, I cannot say that. I am used to letting go of the need to be part of a conversation. Likewise, in a store, when a person tries to talk to me I cannot answer. It sometimes makes people confused that I do not reply to them. I have to let go of that too.
Receiving the diagnosis ALS is like a death sentence. There is no known cure and so, this is seen as a fatal condition. It is just a matter of time.
In my quiet moments I switch from hope to despair and back to hope again, up and down. In moments of despair I have fear of becoming a cripple. The fear of being a cripple, unable to move, talk, or make my needs known, seems worse than the fear of dying. As long as I will die quietly I don’t mind, I just don’t want to die by losing my balance and having a bad fall, or die through violent choking or something like that.
In my hopeful moments I am saying to myself, I will eat healthy food, take all the supplements like enzymes and juices and I will find a way to get well. Even if many people die maybe I will live. I read a book about people who healed from terminal cancer through eating healthy food. I say to myself, I am not in the mood to die, I will live.
But who knows. I can only take one day at a time and live each day in joy and happiness as much as I can. My wonderful husband, Chester, keeps me laughing every day with funny jokes. That brightens each day.
After writing the above reflections, I went to bed. Then I had a dream: I dreamt that I was walking on a beach, skipping joyously over smooth round pebbles. The sea waves were gently lapping the edge of the sandy shoreline. Now and then a bird flew leisurely past. A bit away from me a few other people also walked along the beach. The breeze brought me the salty scents. I was carrying a dark brown board under my arm – it was made of fine mahogany, shaped like a surf board or boogie board. It was not heavy, I carried it with ease. A late afternoon sun was lending a golden glow to the sand dunes at the inner edges of the shore. Pretty grasses grew there.
A great feeling of peace and serenity filled my mind. I felt I had to stay longer. As I turned around and looked back I was aware of my vehicle parked a bit further back – a small SUV just large enough that I could sleep in the back if needed. I thought: “Perhaps I will call Chester and tell him I plan to spend the night here on this beach.”
Then I woke up. “Oh, it was a dream!” Lying in bed I enjoyed the sense of happiness and serenity that still lingered with me. I thought of how in the dream I was perfectly healthy, walked with a light step and thought nothing of carrying the board with me. It made me think: My mind and soul is still free! I can nurture happy thoughts and feelings of health and freedom, in my mind!