Sleeping with the enemy after an ALS diagnosis
At first I feared sleep; now I cherish it
I’ve previously written about sleeping and described how bedtime is one of my most anticipated periods of the day. In this column, I’d like to go a little deeper and get some feedback from other ALS patients.
Do you remember the Julia Roberts movie “Sleeping with the Enemy“? In it, Roberts’ character was in a constant state of fear and anticipation over being abused. She was afraid to go to sleep at night for fear that she might be killed by the man she lived with. She saw no way of escaping her predicament.
That’s similar to what ALS feels like.
Early after my ALS diagnosis, I had thoughts of dying in my sleep because I could control my body more during my waking hours. I stayed up late and fell asleep only when I couldn’t keep my eyes open any longer. I wasn’t comfortable sleeping with my enemy, either.
Dreams to remember
Things have changed dramatically since then. Now I look forward to sleep. Sure, I still have trepidation when I go to bed for the night because my breathing isn’t that great anymore. I have a lot of phlegm in my throat, which could cause me to choke.
Oh, but when I get to sleep, sometimes with the help of a sedative to calm me down, I enter a world of dreams that encompasses all kinds of pleasantries. I dream about my parents and old friends, riding my motorcycle with my club, and traveling. My dreams are so vivid and real to me, and my enemy is nowhere to be found.
It’s such a great feeling, even if it’s for a relatively short period of time. And you know what? I’ve never dreamed about having ALS. I’ve never had a dream about being in a wheelchair. I’m always walking and riding the way I used to.
Maybe I’m experiencing some sort of inadvertent dream therapy to help me get through the day. I can’t explain it, but it sure helps me. Does anyone else out there experience this?
I suppose everyone suffering from heinous ailments welcomes any respite from reality they can get. It’s so hard going through life day to day knowing there are places you’ll never see again or for the first time. It’s so disheartening to accept the vagaries and vicissitudes of life when you have a debilitating disease.
So what is the application of this particular column? It’s similar to a recent one I wrote about planning: Do everything you are able to do while you can.
My wife and daughter knew I always wanted to take us to the Grand Canyon. Having to give up driving ended that dream, because I had done all of the driving when we traveled. But in 2016, we went to Providence Canyon, Georgia’s “Little Grand Canyon,” and then to Galveston, Texas. They drove.
The next year, they said they were going to take me to the real Grand Canyon, but I was very skeptical about the distance. We spent Thanksgiving of 2017 at the place I had always wanted to see, and they drove 5,000 miles to make that dream come true.
Now I have my nightly dreams to anticipate. And even though my enemy is with me, I can find solace.
If you have ALS, use whatever you can to make your day a little lighter. Apply it like a salve all over your body. Immerse your mind and spirit in soothing waters and sweet-smelling oils. Just use what you have, whatever makes you feel better.
I don’t mind sleeping with my enemy now. As a matter of fact, I welcome it.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Comments
Ataklti Medhin
I was recently diagnosed with ALS. Yes, like yours, my dreams are free of ALS. Usually, I am walking or driving-doing fun things with family and friends. I hope that with the recent drugs that are in labs for ALS that promise to even reverse the disease, we all might have a chance to travel the world again.
Cherie L Villano
Thank you James, for this interesting article. Sleep is a wonderful respite, and we can all view it and our dreams as something to really look forward to. No matter our physical condition, our mind and our dreams can be free!
Mary Jane Sherbert
I love your column. I have ordered and read your books. And I want to thank you for your encouragement. I am my husband’s caregiver. He was diagnosed with ALS in March 2017. We live in Sylacauga, Alabama. He chooses not to read any thing or forums on ALS or correspond with anyone with ALS. But me I have to read how others find ways to cope each day. Yes we both depend on God, Jesus and the Holy Spirit for our strength. But sometimes it gets so overwhelming. Please keep writing. If it helps no one else. It helps me.