I continued getting that big @$$ needle with the botulism jammed into my throat a few times a year, year after year. Sometimes the botox injections worked out ok, sometimes not so much. But I didn’t really feel like I had any other viable options.
I basically was managing the situation and things were alright. Part of my acceptance of this resulted from the fact that I was actually thankful about it. I told this to different people over the years: “Hey, if this is the worst health issue I’ve got to deal with so far in life, I’ll take it. There are many things, much worse, that lots of other people have to deal with.” I’m guessing we all know plenty of friends, relatives or others who have had far worse things.
Just shortly before my surgery I attended a funeral for someone who had leukemia. Knowing only a small fraction of what he went through, seeing his children now without their father, listening to his son talk about missing his dad…All of this makes me thankful for Spasmodic Dysphonia versus a multitude of other afflictions far worse.
I tried to ignore SD to the extent I could. When people at work would ask what was wrong with my voice, or why I couldn’t talk, I would basically just dismiss it, joke about it, or try to otherwise diminish its presence. Especially with work, I tried what I could to not acknowledge its presence. This is particularly ridiculous in that it was very obvious to many people that I had challenges.
My previous roles in Sales and my current role in Marketing mean that my job is all about communicating. Which is to say it was rather difficult to obscure the fact that I had a problem – especially when I could not speak! Nonetheless, even after many years, I told only a small number of people what was going on. I guess I just didn’t want anybody treating me differently…did not want to be viewed as someone with a disability (which is what Spasmodic Dysphonia is). I was aware that other people let it take over their lives and seem to almost define them. They were victims. Maybe that’s why I never got involved in any type of support group – physical or virtual, because I felt that would perhaps acknowledge its reality and presence. It would somehow give it more prominence. And I didn’t want to give it any more than I had to. In retrospect, this was pretty stupid. Deluding myself about the reality in which I lived did not alter that reality. Moreover, I should have tried to do more to help others that were more crippled by it, due to lack of insurance, inability to pay for injections, lack of access to care due to geography, or whatever. There are lots of people with lots of valid reasons they are in a bad place. Part of the reason I’m writing this blog is the hope that it can help even just one person a little bit.
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