Polymyositis: The Journey So Far

Polymyositis: The Journey So Far

Author: Ann Harris

Earlier today while working at the Reference desk, I received a phone call from a library patron who wanted to know about the origin of the phrase ‘dark night of the soul’.  Turns out, with some help from good ol’ Google, that it was actually the title of a poem by St. John of the Cross, a Spanish Carmelite priest in the 16th century. It describes the journey of the soul on its way to a spiritual union with God. It is also used a metaphor describing a phase of one’s spiritual life, denoted by desolation, depression and loneliness before ‘the dawning of transcendence’ (does that mean going through the lonely, desolate darkness before finally seeing that light at the end of the tunnel? I dunno…I’m not a theologian). I gave the patron as much info as I could, and she was ever so thankful for my help. She even went so far as to ask me if there was anyone she could talk to (like a supervisor) to commend me for the help I’d given her. I said, ‘Oh, thank you, but it’s not necessary…I’m just doing my job.’ She thanked me and ended the call with a ‘God Bless you and have a good day.’ It was the highlight of a good, yet weird day.

But on the way home, that conversation got me thinking. ‘Dark night of the soul’…loneliness…desolation…depression…polymyositis…

I’ve been back at work now for about six weeks (I have my own desk—yay!). And I’d been driving since my birthday at the end of June. The last nine months have been quite a journey, something that I never would have imagined going through, ever.  And although I suffered through some really (and I mean, REALLY) low points, I never gave up. I never complained (well, maybe a little). But I never let polymyositis get the best of me.  Yes, I suffered from depression in the beginning, to the point of being suicidal.  Yes, I was extremely moody (I blame the steroids). Yes, I was emotional for no reason (again, I blame the steroids). Yes, I felt so alone. But I learned that being depressed and sad all the time was not going to help me or my condition. So, I did something about it. I prayed to God and asked for His guidance. I felt, at that time, He was the only one who could really help me get out of my rut, the only one who really cared about me. I fought back the anger, the tears, the depression, the loneliness…I saw the light at the end of that dark tunnel and proclaimed:

This disease will NOT control me…I WILL CONTROL THIS DISEASE.

So far, so good.  No nasty side effects from medication and infusions. Physical therapy went better than expected (only 8 sessions!).  Docs are very pleased with my progress.  Blood work is getting better each month…I began my journey with a CPK of over 12,000, with swollen legs and muscle wasting in the shoulders and almost zero strength; I couldn’t even pick up a half-gallon of milk.  As of today, my CPK is at 1389 and slowly decreasing, and I’m able to go to the gym again (and yes, I can pick up that half-gallon of milk again, easily). I can pick up my 14-pound cat. I don’t need my cane anymore, but I still use my handicap parking tag, because I can. I can take my dad shopping again and bag our groceries on my own (still remember my bagging techniques from back in the day, when I worked at Farmer Jack). I still feel like I’m walking through water sometimes, as I still feel some resistance when I walk, especially when I walk quickly. I was never in any pain, although a lot of polymyositis patients are.  I’ve heard my share of ignorant comments and from those that pretend they’re doctors, but don’t know their own bums from holes in the ground. I chose to ignore the ignorant, and maybe laugh at them a bit, just for being so darn ignorant (and still do).

I’ve been fighting the good fight for the past nine months, and will continue to fight. I will fight with the determination of the mightiest Spartan warrior, even sport a Spartan helmet if need be. (Wait…how come I don’t already have one? Man, that would be super cool.)  When I got that life-changing diagnosis on January 3, 2011, I experienced that ‘dark night of the soul’ (a ‘night’ that would last over three months). I thought it was the end of the world. I thought I was going to go through this alone. Boy, was I wrong. There really was a light at the end of that tunnel. My family and friends have been nothing but supportive and understanding, and I love and appreciate them immensely for it.

Polymyositis has taught me not to take my life or health for granted anymore.

Polymyositis will not control me. I will control polymyositis.

That is all . . . for now.

Author: Ann Harris

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Jerry Williams, the Founder and President of MSU, was diagnosed with Polymyositis in 2003 at the age of 27. Since his diagnosis, Jerry has made it his mission to help others living with the rare disease, Myositis. To this effort, Jerry is involved in many different aspects such as education, writing, helping support and answer questions from patients and caregivers, social networking and website development, and much more.

View more information: Jerry Williams

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Hi, this may be interesting to you: Polymyositis: The Journey So Far! The link is included below: https://understandingmyositis.org/polymyositis-the-journey-so-far/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.