Learning to Live in Harmony with Frontotemporal Dementia

Byron Katie’s book, ‘A Thousand Names for Joy’ (Living in Harmony with the way things are) is a great book for where I am in life.  The chapters are short and each one has a story or message about being in total ease in the present moment (painful or not).

Since my husband, Dave was diagnosed with Frontotemporal dementia 3 years ago, this book is another reminder of one of the biggest lessons I am learning…accepting what is.

In one of her stories, Katie describes a conversation with Peter, a 43 year old with dyslexia. He grew up wanting to cut off his right hand because he hated his disability of not being able to read or write. People in grocery stores would tell him to hurry up because he was slow writing out a cheque. He was called stupid and dumb when he would ask someone how to spell a simple word.

Katie asked him if there was anything peaceful about having a ‘need’ to know how to read and write…

“No”

“Now give me 3 reasons why your life is better because you don’t read and write”

Peter said “Well, I don’t read a newspaper so I don’t have to listen to all of that bullshit every day (politics and the economy).”

 Not reading also gives him more time to be creative (he made the boots he is wearing). And since he is unable to help his son with his homework, it teaches his son to be responsible for his learning.

Peter started seeing the gifts of dyslexia despite his belief that he is severely handicapped.

On a smaller scale, I was out for a run with Dave this morning and it was -24 C.  I thought I dressed warmly enough (the only exposed part of my body was my eyes with icy eyelashes). About 15 minutes into our run, my toes were numb and painful.  I wasn’t enjoying myself at all. Remembering what Katie said, I admitted my pain and suffering. Since I was at the half way point of my run, I knew that I would have to accept and live with it until I reached home. After a minute of whining, I let it go–there was nothing pleasant about holding on to that feeling. I started relaxing into the run. I noticed the silence as I ran on the snow; the blue sky with only a few clouds; and I thought about how lucky Dave and I are healthy enough to run in these extreme temperatures.

Within a few minutes, the pain in my toes was gone. I think they were still numb ,but my run was more enjoyable.

There is no denying that someone with dyslexia has pain when they can’t read and write. There is pain in frostbitten toes, and there is pain in living with dementia. But accepting it for what it is, instead of resisting and fighting it, makes life easier. As Dave says when I ask him if he is mad that he has dementia…”No, why would I? Would that make it better?”

Living with the challenges of dementia is giving me a crash course in surrendering and being at ease with ‘what is’. Learning to let go of small incidences throughout my day is giving me more peace every day and I wouldn’t trade my life for the one I had before Dave’s diagnosis.