Wonder Crush Wednesday is a weekly post by yours truly where I choose to discuss the wonders of diversity. We all have Superman and/or Superwoman within us. The right representation is needed to make sure that everyone knows that. These posts aim to highlight diversity in both literature and other aspects of life. Feel free to adapt this on your blog too!
#DisabilityDiaries2017 is an event created and hosted by Ely, Angel, Cee Arr, Dina, Jolien, and Lara between 14/1 and 21/1. Unfortunately, I’ve found out about this quite late but I’m so happy to have found it nevertheless. It is a great initiative that aims to start a discussion on disability within the book community, which I think is superb.
The coming few Wednesdays I would like to write about personal accounts of disabilities in me and close family members. I hope that this offers some insight into various disabilities and normalises the word, hopefully we can all destigmatise the term.
Hello, my name is Yasmin and I have hemiplegic migraines associated with sleep disturbances and hormonal changes (basically, when I get my period). There’s not a lot of information about it but let me explain how and why I refer to it as a partial disability.
Hemiplegic migraine is referred to as a “migraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent.
My symptoms start out four days before the actual attack with two days of mild headaches. Then, I’m fooled with two headache-free days where the only symptom I have is a bit of nausea and the experience of deja vu without the actual deja vu… This becomes more intense as I near the attack. This is referred to as an aura that most people with any type of migraine might experience. It’s very hard to describe since the experience varies between patients and the phenomenon is not quantifiable.
It is a scary thing to experience because the first thing I feel is pain in my shoulder and arm, extreme dizziness, and a sense of falling. The feeling comes about from the weakness on my left side which is accompanied with speech difficulties and, when it’s really bad, uncontrollable tremors.
To any medic and doctor it looks like a stroke so I’ve done more CTs and MRIs than necessary and they’ve all come out perfectly fine. My blood tests are always within the reference range, since I’m otherwise healthy. It occurs once or twice a year (three times last year) and it usually lasts up to 24 hours. Every attack is different, sometimes I will only experience weakness in my arm and other times I have to be carried around like a rag doll.
The main symptom is of course hemiplegia which is:
a condition with varying degree of weakness, stiffness, and lack of control in the affected side of the body.
This is how it looks like:
This is how it feels like:
Now, about the “partial disability”. This condition isn’t something that I suffer with daily, during the attack (and before and after) I am disabled from using any vehicles or being alone. The attack can strike at any minute and there have been instances where I have fallen on the street and hit my head. But, apart from that, I am pretty much able bodied (wellll, except from the chronic pain in my knee and insomnia but that’s for another time).
This is a personal preference because I feel like it takes away from people with more permanent disabilities that affect their daily lives. Even people with hemiplegic migraines that suffer way more than I do and that are completely debilitated by this migraine variant.
I feel especially strongly to identify as partially disabled since I am a medical student and I work in the ER. We meet people with chronic disabilities every day and it feels like an insult to them to compare our struggles in any way. Of course, this is a very personal account and anyone with a real diagnosis may identify however they might like.
This is a very rare condition and I hope you’ve learned a little bit about it. Please feel free to comment your own thoughts and feelings!
One tip, if you do know someone with this, please don’t be scared of them. I remember being in hospital and my friends being scared of coming near me. That made me very agitated which I couldn’t communicate. My brain is still very much functioning and I understand everything going on around me. If you can’t handle it, please leave the room.
More links on hemiplegic migraines:
More interesting links on disabilities in literature:
For more of what I’ve read this year you can follow me on Twitter, Goodreads, and Tumblr. Make sure to check out this twitter thread of books I have read in the past year in gifs.