Comfort with My Illness

Martha’s Vineyard

For a while last evening, Lois couldn’t find her credit card.  She said something about having heard that she should memorize the number of at least one of her credit cards, but that would be impossible for her.  I said somewhat arrogantly that I had memorized mine.  (I should add that I have worked on it for a long time and still reverse some digits.)  She said, “So which one of us has Alzheimer’s?”

It seems to happen frequently. I’ll mention a symptom, and Lois (or Marja) will complain of having the same symptom. 

We older people are very afraid of this disease.  Normal ageing does sometimes lead to similar symptoms.  And we’re worry.  Lois and I were talking about the intelligence test Kong gave me to make the diagnosis; Lois asked what questions I missed.  I told her about forgetting the date.

“The date!?  The date?!”  Who doesn’t forget the date?!  She sounded incredulous, especially when I said that the diagnosis of dementia was made after missing only five questions like that.  I don’t think Lois or Marja or others are making their concern up.  She probably does have similar symptoms.  Partly, it’s denial: “If I don’t have Alzheimer’s, but I have the symptoms of Alzheimer’s, then maybe David doesn’t have it, either.”  But the opposite is probably also a factor: “Maybe I have it, too.” 

We’ve laughed a lot here.  Much of it has to do with the increasing comfort with my diagnosis.  There are lots of jokes or just light-hearted comments to be made. 

It’s frustrating that I can’t remember any specifics now as I write.  I’ll need to use my notebook for even the little things.  It makes this blogging more difficult, too.  I know that stories are by far the best way to tell the tale, but I forget the details almost immediately.  What’s interesting is that—even though I can’t remember the details of the incident—I remember the emotions quite well.  The dark humor is comforting for me.  We don’t have to deny the disease.  I don’t have to feel guilty or so frustrated by my mistakes.  I suppose it will be harder when my symptoms are much worse.

Fred is a psychiatrist.  I asked him if he thought that medical students might find interviewing me or my lecturing them interesting.  Once my symptoms are a little worse, knowing that I’m so impaired in one area but so competent in another (talking with them, for instance, or being able to handle a blog) may teach them a lot about the disease and become more comfortable with it.  We talked about lots of possibilities: Lecturing to medical audiences—especially medical students—in small groups and allow them to see my limitations clearly even as they see other areas that have not diminished; having first-year medical students assigned to follow me every six months or a year to watch the progression of the disease; making a video (or even a documentary) at periodic times that would show the progression of the disease.

I worried out loud that the ability to talk cogently about my experiences might disappear, too, but Fred thought that it might take quite a while.  I didn’t press him for details, but perhaps that ability might come from a different part of the brain.  I need to ask him why he thought that might be true, so I’ve written the question down.