Imperfections of the Human State

A blog about living with ALS - and more

Category: living with ALS

Doc

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On December 31, 2020

In living with ALS, loss

I just wrote a Dear John letter to my dentist. We had been together for 25 years, and I absolutely loved him. Sadly, as is common in many long term relationships, he can no longer meet my needs.

I am making light of it, but it really is a loss. Of all the losses that come with ALS, I never anticipated that one of them would be my relationship with Mark “Doc” Nordlie, dentist extraordinaire. As amazing as he is, I now need more specialized care. I have a wicked gag reflex, as well as shortness of breath and difficulty swallowing. I also need to be able to stay in my power wheelchair during the cleaning, both for stability, and also because my communication device is attached. I’m certain that the wheelchair would not fit in any of the stations.

I never discussed these developments with Doc, so, in truth he might feel that he and his team would be able to provide what I need. While I would love visiting with Doc and the staff post pandemic, I don’t want to go to the office as a patient who can’t move or speak. Seeing Doc for dental care is one of those experiences I would rather preserve as a memory of my able bodied self.

I feel that way about a lot of places that hold a strong attachment for me. Eastham, Massachusetts, on Cape Cod, is my favorite place in the whole world. I would rather enjoy my memories of staying at the cottage on the pond, swimming at First Encounter Beach, and eating lobster, than going now and staying someplace ADA compliant, watching other people swim, and eating through my feeding tube.

I know that it’s possible to enjoy a place just by being in it. I do feel that way about some places. But I am also learning that I can do a lot of living in my memory and imagination. That includes reliving wonderful memories of going to the dentist.

My Tips for pALS*

* people with ALS

I don’t intend for this list to be comprehensive. Some tips are more relevant for people at the beginning of their experience with ALS; others may be relevant to folks at any stage. I will update the list as things occur to me.

  • Get the best neurologist you can find. Ideally it will be someone with an interdisciplinary clinic so that you can see multiple specialists on the same day, and they will work together to coordinate your care.
  • It’s never too early – or too late – to get a bidet seat. It will allow you to keep your independence longer while toileting. Even if you lose hand function, it will allow you to feel clean before someone else dries you. (Some seats have dryers, but don’t count on them doing the job.) Another big benefit is that the posterior setting (vortex on my BioBidet) can relieve constipation.
  • Read The Butcher’s Daughter: The Story of an Army Nurse with ALS, by Sandra Lesher Stuban. I found Stuban’s story helpful, because she provides a perspective of dealing with ALS as a woman and, especially, as a mother.
  • Let people help. It makes them feel good. I have trouble asking for help directly, so I send announcements via my lotsahelpinghands.com website. My friends register with the site, and when I need something, like a trip to the grocery store, I send word to everyone. Whoever can do it signs up on the calendar, and I don’t feel like I have put anyone on the spot.

By Way of Explaining the Title

At the beginning of Homer’s epic poem, The Odyssey, Odysseus is on an island with the beautiful nymph, Kalypso. He has been away from home for many years, first fighting in the Trojan War, and then waylaid while the gods messed about with him. At this moment, Kalypso tells Odysseus that if he stays with her, she will give him immortality. Longing for his wife, Odysseus turns her down.

According to a character in Erich Segal’s novel, The Class, Odysseus’s decision reveals the theme of The Odyssey, namely: “The imperfections of the human state are outweighed by the glory of human love.” That statement has stayed with me since I read it when I was 15. Since receiving my ALS diagnosis, however, it has taken on greater significance. When I feel myself leaning too far into despair, the truth of those words pulls me back and brings me comfort.

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