Bob D's interview
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How did all start?
I was diagnosed at 15 though my mother noticed it when I was born. In kindergarten when all the others sat cross-legged on the floor and I could not. Was accused of not trying hard enough. At 15 through highschool spent vacations in hospital removing worst bumps. Social issues not diagnosed at that time.
Do you already have a diagnosis? How long did it take you to get it?
Not identified by name until 15 years old
For what medical specialties have you been treated? What has been the most useful specialty for your?
Orthopedics focused on mechanical issues through highschool. I have not found much help since. Severe fatigue (sleepy attacks) treated with Ritalin and Provigil but not tied to specifics of MHE. Social conditions not so much treated as learning to adjust.
What has been the most useful thing for you so far?
Ritalin and Provigil allowed me to function much better going from sleeping, or feeling sleepy most of the time, to a better and more normal sleep schedule with less sleepy attacks.
What have been your biggest difficulties?
The physical limitations and pain have been easiest to deal with. I learned what was not good to do and did not do that. The social issues of reading and understanding others is a constant problem that cannot be avoided so easily. Over time I learned workarounds and things to look for intellectually but still have great difficulties.
How has your social and family environment reacted? Have your social or family relationships changed?
Family relationships were never good and mostly ceased after college. Other relationships have been fraught with misunderstandings that good or bad I have been unable to see them coming.
What things have you stopped doing?
Outside travel by car, or sailboat, or adult tricycle, were things I did a lot but now both health and physical ability have made those difficult, limited to a power chair.
What do you think about the future?
The World has become far more problematic far beyond my own issues. At 73 I am older than any male ancestor I am aware of managed to reach and the challenges of things beyond my personal situation such as politics and pandemics do not paint a bright future even if I was much younger and better able to deal with them. Things might improve a lot over 20-50 years in the future or not, but either way, I will not be there.
So far, which years have been the best years in your life? What have you done during them?
Between 25-35 it was a different world. I could make artistic work and sell it like I was printing my own money. I had cut my personal expenses to very little and could go sailing for weeks at a time. Over time the world closed in and things got ever harder, I gained an upper hand learning Autocad when demand far exceeded supply and made good money but expenses and my social limitations became evermore critical limitations, and as my legs went bad was too disabled to find work.
What would you like to do if you didn’t have your condition?
Without the condition from the start or diagnosed properly and early it would be a different universe than this one. On the other hand, the mental "superpowers" that went with it took me beyond the competition in solving logical design issues, though my social disabilities made it hard to capitalize on those. The simple luck of finding the right circumstance to flourish did not happen and while it was rarely the worst possible it was far from the best either.
If you had to describe your life in a sentence, what would it be?
I have had wonderful times and horrid times, I cherish the wonderful times and choose to focus on those
Finally, what advice would you give to a person in a similar situation?
Be here now. The past cannot be changed, and the best and worst expectations are the least probable and the most likely you will not expect. Do what you can for future circumstances, but stay flexible, and most of all appreciate the moment as it will not come again or last. The most terrible times will not last but will get better, live the best times to the hilt as they will not last either. The greatest disappointments will be the path not taken.
