Martha's Vineyard, MA (visiting my sister)
The responses to my last post about my normal cognitive exam have touched me deeply. Almost all of them have been notes of understanding, appreciation, and love. They’ve helped me realize what a wonderful little community has formed around this blog. And I suspect that the community is considerably larger than only those who post comments or email me.
Some of the responses have been of empathy and compassion. From these I receive a great deal of emotional support. It is important when one person will listen to another’s pain.
There are a few others of you out there who, like me, also have some degree of subjective cognitive impairment, but their objective neuropsych tests and brain scans are normal; you are or have been in a state of uncertainty similar to mine. It’s reassuring to know that I’m not alone, that this little community includes those in very similar situations.
Some of you have found a particular solution to your uncertainty and hung on to it; others have taken the route that I find most comfortable, learning just to live with the uncertainty. It is good that we take whatever will work for us.
A number of you have reminded me of the ultimate uncertainty of all medical science and especially with the brain where there are large areas still unexplored and not understood. As a medical person myself, I do at some level know this, so it’s good to be reminded. There is still much mystery in disease and healing.
A few readers have suggested that the spiritual task is to let go of the images of my “self,” whatever those images are. Buddhist teachings are insistent that hanging on to any images of self—“Alzheimer’s patient,” intellectual, blogger or teacher—leads to suffering. The self is an ever-shifting shadow that eludes any kind of definition. In the Christian tradition, too, we remind ourselves that whoever would save his life will lose it. Let go! Let go!
And then there are those suggesting other possible diagnoses. In most cases my doctors have ruled these diagnoses out (as much as medical science is capable of it) by the pretty thorough testing I’ve been through. But anything is possible.
A few have urged me try or at least look at new treatments. For a number of reasons that I’ve discussed in previous posts (here and here), I’m reluctant to begin treatments substantiated only by anecdotal evidence. (If I had followed one or another of these bits of advice and started coconut oil or done crossword puzzles or tried whatever, I’d now be the new poster boy for that treatment.) I understand well why others try these treatments and would not try to discourage them from that route. But it’s not mine, and I don’t even look very seriously at the details of new treatment. Nevertheless, I appreciate the concern with my wellbeing that the emails evidence. I’m grateful.
All of this indicates to me that there are a lot of us in need of information, community and concern. It’s all the more reason to keep trying to bring this dread disease out of the closet and into the light where we can all look at it and offer one another the help we need.