As someone with a chronic illness, and after having sat vigil for several nights by my father’s bedside keeping him company so that he would not be alone when he died, these lyrics by Waylon Jennings has always carried some significance for me:
“If you see me getting smaller, I'm leaving, don't be grieving, just gotta get away from here. If you see me getting smaller, don't worry, I'm in no hurry, I've got the right to disappear.”
Today was both surreal and a challenge.
While catching up with a friend, in chatting about my illness and the lack of progress or any meaningful medical support, I casually mentioned that I have allocated in my mind a bit of a timer. In that if from some years from now if things do not improve and my quality of life decreases any further, I will consider my options and my own right to disappear.
She did not take this well and came at me from every angle to dissuade me from even considering this path. It was a difficult conversation to have but in some way I’m grateful for it, in that my conviction on the subject is undeterred. In Waylon’s words, I feel I have the right to disappear. And as Nina Simone famously sang “if I die and my soul be lost, Nobody’s fault but mine.”
I’m borrowing a lot of other people’s words today but in the words of Forrest Gump; “And that’s all I have to say about that.”
No sooner had I finished this phone call, I got a call from my doctor and found out from him that when the hospital reached out to him to ask for information about my medical history, they were trying to get him to agree that I suffered from a psychosomatic disorder. Never mind that I was in fact suffering from chronic hyperthyroidism, and the very first thing I found when I googled ‘inverted T-waves’ was that it is most often associated with thyroid conditions—instead of getting an endocrinologist to review my case, the first thing they reached for is that I must be crazy.
As much as I continue to fight for answers and advocate for myself, I do not have endless resources at my disposal. So while I continue to hope for and try my best, I do not think it is unreasonable to consider the worst case scenario given how many doctors I saw while in hospital, all of whom failed to consider or identify that my cardiac symptoms were thyroid related despite me suggesting this on numerous occasions.
This whole day has provoked some soul searching and I find these words from The Castaway by William Cowper echoing in my mind:
“No voice divine the storm allay'd,
No light propitious shone;
When, snatch'd from all effectual aid,
We perish'd, each alone”.
Of other people’s opinions on my health journey and to circle back to the Paul McCartney penned song from the title of this post—and a serendipitous nod to name of this group—I’ll end this post with these borrowed words that I think rather effectively summarise what it is to live with an invisible illness; “Many times I've been alone, And many times I've cried, Anyway, you'll never know, The many ways I've tried”.
#Grief #GriefQuotes #MightyPoets #MightyMusic #Thoughts #medicalgaslighting #Gaslighting #MyCondition #MyalgicEncephalomyelitis #ChronicFatigue #InvisibleIllness
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