There is a MonSter inside of me.
It was there…even many years ago. Back then, I didn’t know what it was. It didn’t have a name. And it barely had a presence…just an whisper. Then one day, almost 8 years ago, it spoke aloud. To me.
One day I woke up, and one of my legs didn’t. Like…it was still asleep. And it stayed that way for six months or so. Curious, for sure. Worrisome, maybe. A bother. Walking upstairs when only one of your lower appendages is cooperating, is tricky. Yes, tricky is a good word. So my curious self finally found my way to a specialist. A specialist in MonSters. And so it was that on a sticky summer morning, over the phone, I was told that inside of me, inside of my brain and down my spine, lived a MonSter.
There are moments in life that imprint themselves upon one’s soul with indelible ink.
I remember exactly where I was standing. I remember that I was holding a teaspoon of baby food in my hand. I remember saying very calmly, to the voice on the other end of the line ‘Could you please repeat that, I thought that I heard you say…’. I remember the look on Eric’s face.
MonSters are scary. You never know when they might show up. It’s the not knowing, really. Its the wondering…when. A MonSter doesn’t just sit there out in the open and let you get used to its presence. It hides and then when your head is turned, when you’re busy going about your life, it jumps out and scares the breath out of you.
That’s what happened to me. Just after I had my little boy, the MonSter decided that I wasn’t listening and it needed to shout a little louder.
Things had mostly returned to normal for me, physically. The leg thing had mostly resolved, only resurfacing as an intense buzz up my leg and to my crotch when I walked a long while. I had experienced a sudden hearing loss combined with tinnitus (a high-pitched squeal). It was fleeting, and served more as an experiential learning for my clinical practice, than anything. I began a battle with my insides, having been significantly affected in my ’saddle region’, as my doctor termed it. I know…super sexy, right? There were other, less objective symptoms. Perhaps I was more tired. Perhaps I was more clumsy. Perhaps I was less focused.
And then. I experienced a rapid, progressive loss of vision. First in one eye and then the other. Plateauing at near complete loss in my left and moderate loss in my right. Resulting in 6 weeks of the death of my visual world as I knew it. And although I learned to navigate my house, my neighborhood, my life through a cloudy lens, my fear of this MonSter became bigger than me. I was anxious. I was sad. I was terrified. I felt so alone. A baby + toddler + loss of independence = sad mommy. A sad me.
And just like that, as quickly as it had appeared, the MonSter retreated yet again, my vision restored. I felt immense relief but although I knew I should be grateful, I was too pissed and full of pity for myself to quite get there. To the grateful place. I had a hard time moving past the ‘poor me’ place. Others tried to help me get there, but I had to find my own way. I did. In my own time.
I think maybe we each have our own monsters. Some of us probably have a few. This one has a name. This one can be documented by brain scans and blood tests. This one has nothing to do with make-believe. And maybe, in some ways, that makes it easier. Some monsters are more elusive; it’s almost impossible to know if they’re even there.
*I wrote most of this awhile ago and am just now gathering the courage to post it. I’m working through a few things right now and one is my denial over this…disease.
The MonSter has a name. It’s M.S. I have Multiple Sclerosis. It’s not who I am but it is something I have. I drew an unlucky, short straw. Not the unluckiest or the shortest, to be sure, but still not great. I have re-started the journey of taking my medication again. I’ve begun a ritual whereby each time I push the needle into my skin I say ‘take that!’. Mostly inside my head. But sometimes right out-loud.
Take that, MonSter.
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