Updated: Jul 31, 2020
Hi readers! As is customary in these situations, I would like to candidly introduce myself in what will undoubtedly be an emotional first post. It is safe to say that I have attempted to blog on a number of occasions, but most of these attempts have been unsuccessful.
I hope that this attempt will not be like the others, so sit back and enjoy the ride. I will deal with a lot of heavy stuff in these blog posts, but I hope that it will be cathartic and offer a kind of release from the noise when it becomes too loud to bear. As always, honesty is the best policy!
My name is Hemali Depala and I suffer from Congenital Myasthenic Syndrome (CMS). It is an extremely rare genetic condition, so I guess I am one of the 'special' ones. CMS made its grand entry into my life in the early years, being diagnosed with the condition a few short months before my first birthday. I won't delve extensively on the nitty-gritty of the condition, but I will link a site to Myaware, a great organisation that works closely with people living with CMS and Myasthenia Gravis - take a peak if it has tickled your fancy.
Most people assume that my condition only presents its physical challenges - I have limited mobility and experience fatigue in a way that is quite different to what most people commonly experience on a regular basis. But I have come to realise that it has taken its toll mentally over the years, especially as I've grown to be an adult. It is exhausting to say the least. With age, I have gained understanding and with understanding, I have experienced a level of loneliness and other challenges that come with a condition that is not always visible. I realised from a young age that I didn't fit in like everyone else, but on the surface, I was no different.
Throughout secondary school and sixth form, I found it extremely difficult to integrate myself into social situations because I felt people would judge me for my condition. A large part of this anxiety came from how I undoubtedly viewed myself - I didn't think I deserved the same privileges as those around me. I call them privileges because most people often forget and take for granted the ability to socialise and the importance of having a community outside the home. For a very long time, I didn't really know what it meant to have friends. I was singled out, both intentionally and unintentionally, but there was very little I could do to change what people may have been thinking about me. I just wanted to be like everyone else - ironic, I know. Eventually, I internalised every nasty comment or hurtful look, real or imagined, feeling myself unworthy or undeserving. It's quite frightening how little I used to think of myself and how little I think of myself even now, despite having a much better support system.
I often worry if my condition and weaknesses are all people see of me. It is all I see of myself sometimes, so much so that it is the first thing aside from my name that I introduced in this blog post. It truly puts a new spin on the 'elephant in the room'. It feels like I have been put into the wrong body, trapped but no one can help me. I can't even help myself because my own body works against me.
I mentioned before that one of the misconceptions of a physical disability are that its effects are purely physical. But, the most painful part is what it can have the power to do mentally to a person. It's something that I have grown to realise as my condition has inadvertently affected every single aspect of my life. I constantly wonder what my life would have been like if I could actually have been different, unhampered and unrestrained by something that I don't have the power to control or change.
I am a very determined person, very driven and determined. I have never liked being told there isn't something that I couldn't do. As a child, I was always taught to be cautious and everyone was very cautious around me. The slightest negligence was likely to result in a short stint in the hospital or, worse still, the ICU. Naturally, I have always been told that there are things that can't or will probably never do - I still hear it now.
I always felt the need to prove myself, to prove that I was good enough or capable of doing what others considered impossible for me. I am extremely proud of the determination I have because I wouldn't be half the person I am today if I wasn't so driven to show what I can do. But it often becomes a very heavy weight to bear - I am always fighting and competing with myself. I understand my limitations, but I also don't want to acknowledge them because it means that I have lost.
CMS has had a massive impact on my confidence. I have grown more reserved with people that I meet, not having the confidence to even trust myself to speak in social situations. I am just afraid of opening up and getting rejected. I know I am a good person, a kind person - I hope! But, I can never truly show people. Academically, it's been immense pressure as time has gone on. I pride myself in being a perfectionist, but it gets in the way. Academia is a part of my life where I can regain control, so success becomes all the more important here. It's safe to say that one cannot be and isn't perfect all the time - I learnt that the hard way.
But I have been trying to be better, kinder and more loving to myself. I am trying to work on how I view myself, but it is something that will hopefully become easier with time. I would like to leave you with quote from the person you can always count on to give great advice: Albus Dumbledore (yes, I am one of those!):
“It matters not what someone is born, but what they grow to be.”
I hope I haven't scared you off too soon! I appreciate the time you have taken to read this post and stay tuned ...
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