DBS Journal: Transparency

A good, old friend (Ken B) included this comment in a note just ahead of my surgery:

The more I think about it, the more I really appreciate that you sent out that e-mail this morning.  In my (not-so-humble) opinion, too many people keep too many secrets about illness.  Something about perceived weakness, or “being a bother”. Do you remember the Caring Bridge website that kept me in touch with everyone when I was in Seattle?  I loved that.  I think that people should learn more about these things so they know how to deal with it when they, or a person close to them, has to live it.

Ken has been through two bone marrow transplants for aplastic anemia, traveling cross-sountry to Washington state. His body had stopped making new blood cells. To suppress his immune system, the doctors put Ken on heavy-duty levels of catabolic steroids, including Prednisone. So he knows that of which we speak.

I couldn’t agree more — it’s exactly why I created this web site, and why I’ve been so candid about my condition over the past dozen or so years. I’ve met a few people with Parkinson’s who did not handle themselves or their conditions well, and the misery was pretty obvious to bystanders, if not to the caregivers who had to deal with it.

I can’t hide it; people are curious. What is there to lose by not being open about it?