Been gone a while, thinking and working. I hope that you all are well. Here is a continuation of the story that I began to share with you months ago.
Status quo continued. Life seemed to be back on course with the wins sometimes more common than the defeats. Something remained, though, and I had no idea what it was.
What was it that I required? Who could know, but it seemed that I had both short- and long-term ideas. I needed to stay healthy, active and independent. Beyond that was a wild card. I had spent nearly 15 years figuring out who I was, all the while insulating myself from the community of people stricken by X-ALD. Was that denial? I do not expect it was. Truth be told, most of the people that I met did little for me. Hearing the same stories about how bad it will get, or learning just how useless a crippled carpenter feels did not sit well with me. So, I continued my battle alone. It was a one-man battle.
And I have…
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Hi, Keep sharing and good to hear from you!