A strange thing happened to me yesterday.
When I was a young man, freshly diagnosed, I was full of vinegar, keen to learn the science and seek out potential cures. Not snake oil, oh no. There plenty of these salespeople to be had. This was not it. I wanted science-based answers.
Sadly, there really was not much going on. I found myself sadly disappointed in my own industry, that would be the Pharmaceutical/Biotechnology industrial complex. There was just nothing going on; no commercial interest in X-ALD or AMN.
Nonetheless, whenever the Kennedy-Krieger Institute was looking to enroll for anything, I was down for it. While I may have helped the science grow, no cures appeared from these efforts.
Things change. I got old, and further progressed in my disease. But as I learned yesterday, my thinking had also evolved. Here is how:
Interest in rare and neglected disease, even X-ALD has exploded in the past 10 years. I am aware of at least 4 companies actively pursuing therapies for AMN. And for that I should be happy, right?
Yes and no. I am very happy for the community. It is a good thing in a general sense. But I find from a personal perspective, meaning what can this do for me, unmoved.
I think that I knew this but it hit home for sure yesterday. I had this call with a guy from a company trying some truly novel things- the kind of things that can make a difference for AMN patients. I was amazed when he told me that all of the companies are not competing with each other, but actually pulling together as a team to come up with a multi-pronged approach to the disease.
While I have long considered myself too far along in the disease for for inclusion in a trial, he thought that I might qualify for their study.
I found myself in a strange place. What I had been asking for over the past 25+ years was here, and it was now, and I did not care. Why? How could this be possible?
I thought a lot abut this yesterday evening and came to the conclusion that I am retired from clinical trials.
Not speaking for others, but from my own experience, when I am honing in on something, a potential therapy for example, I maintain a very sharp focus, bordering on obsession. To the exclusion of other stuff. This leaves a lot undone, so many missed opportunities.
I have adapted well to being disabled, and built a life that works really well for me. I am good.
I came to realize that I was done ignoring the rest of my life to allow my hopes to build for a different, enabled one. I just do not want that, I have had enough.
So, I will fight, and do what I can for the community, I want that, but please, leave me alone, Drug Company Man.
One thought on “Am I done? Am I Resting? Something Else?”
Reblogged this on Survivors Blog Here Mental Health Collaborative and commented:
Perhaps this signals that I have finally learned to cherish what I have?
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