Getting On My Nerves
Multiple Sclerosis Diagnosis at 28
By: Tricia Callahan
Everyone has life defining moments. At 28, I figured mine was on the horizon: it would be hidden in the look of bliss in my fiancés eyes as I walked down the aisle, the achievement of a master’s degree, or maybe even traveling cross-country. Unfortunately, the universe had other plans for me. My “moment” was devastating; no Facebook update, no party, hell I barely want to talk about it, but here it goes.
It all started four months ago, over a game of rummy. After dealing the cards between myself and my fiancé Cliff it came to my attention that I couldn’t read the suit or number of the cards from across the coffee table. I had noticed minor changes in my vision over the course of a few days but that night it was different: my vision blurred, my head pounded from straining my eyes, and white lights danced in my peripheral. That alone didn’t worry me much, I figured I would get a new prescription and maybe even some stylish new frames. I took this confidence with me to my local optometrist the following morning.
Five minutes into my appointment it became apparent that my left eye was doing all the work. A simple vision test proved I was legally blind in my right eye. At this point I was pretty freaked out. Seriously, who goes blind overnight? My optometrists usually light friendly voice shifted as he explained my optic nerves inflammation, which outside of inducing my sudden vision loss could be linked to various serious medical issues. Next stop? The Emergency Room.
Sitting in the waiting room for hours Cliff and I had plenty of time to look at what could be wrong but after a while we just started watching cute cat videos and joking. Our optimistic deduction was that the situation was just blown out of proportion and the doctors weren’t going to find a thing. Internally, we were both panicked, WebMD wasn’t giving us a lot of good options. I mean there is nothing to laugh about when it comes to a potential brain tumor.
When I was finally called back I was excited. I was like, “Cool, let’s get this over with”. I was over the smell of clean linoleum, the blinding florescent overhead lights, and how empty and dreary the white walls were. But once we left the waiting room we went to a small room separated by curtains and waited some more. Singing songs under my breath and trying to maintain an upbeat facade my anxiety slowly built.
After about an hour someone came to take my blood without really explaining why they were doing so. The nurse’s crazy curls frizzed around her jawline and her eyes seemed kind but I didn’t want her anywhere near me, or my veins. Veins to me are a visual representation of my own mortality and I prefer not to think about the fragility of my soul’s vessel thank you. But there I was just a little vein factory for a nurse who could torture me however she saw fit. She ended up placing the IV in the crick of my right arm and I had half the mind to smack her across the face. I had this, thing, inside of me, this foreign object that didn’t belong and I felt an irrational sense of violation.
My dramatic reactions make sense when you consider that I have never been to a hospital in my life. After drawing a vile of blood, to add to her blood collection for all I knew, she informed me the IV was going to have to stay in. Not surprisingly I was not happy about this. I kept my cool but not without complaint. The doctor finally made an appearance but only to send me to get an MRI.
They wheeled me back to the MRI machine at 10 p.m. at night. The technician smelled like he had just ate Chinese food and I could taste it through his latex gloves when he put gauze in my cheeks before placing a foam helmet on my head. I felt in that moment that I had enough excitement for the day. For the next hour I laid there like a specimen as the machine yelled at me. Eventually the buzzing and shaking became the norm and I drifted to sleep for a few minutes before finally being released from the claustrophobic capsule.
After being wheeled back to my little room I anxiously awaited the doctors return to discuss my MRI results. Of the whole ordeal, this bit of the night goes by quickly. The doctor came to his professional prognosis, I had Multiple Sclerosis. He said it so plainly like he was putting butter on his bagel. He kept patting my shoulder repeating, “It’s treatable” to which my mind was replying “NO WAY! That makes this news so much better! Aren’t you just God’s little ray of sunshine!” Although unwarranted, I was fuming. Looking away from him and Cliff I let tears slowly roll down my cheeks and when the doctor finally left guttural sobs escaped and I didn’t stop them.
The next two days in the hospital were a bizarre blur full of: confusion, anger, and sleeplessness. You never knew when the next round of steroids was coming or when the phlebotomist would need 3 more vials of blood. And eventually after days of tapering down the steroids via capsule form at home my sight was all but back to normal. Two weeks later I was met with new symptoms: feelings of numbness, slurred speech, and reoccurring unwarranted fatigue. I could go on but the truth is MS never goes away and at that point you would have my life story, so I’ll spare you.
Finding an overall purpose for sharing this anecdote felt impossible. Sparing clichés and inspirational chatter all that remained was the black hole of uncertainty. The truth is…I’m scared. Scared of a file cabinet of symptoms and neurological repercussions I may encounter due to MS. Yet, forward I march, through good days and bad. Even as I type this my fingers recoil in pain but I keep typing. And I guess, in the end, I wrote this for me because I refuse to be scared, especially of living.
I completely understand how you feel all too well. I know it is all very scary because of the unknown. I was diagnosed with MS when I was only 19 years old, so I have been dealing with this illness for 16 years. When I was diagnosed I had lost complete vision in my left eye, so of course I just thought I was going blind, never did I expect MS. But, over the years I have learned more and more about it and know life will go on, it might just need some adjusting at times. I started my blog about 4 months ago and it was the best decision I have ever made. I have been able to communicate with so many people all over the world that really understand. I hope you find blogging as therapeutic as I have. I look forward to more of your posts and if I can ever do anything for you, please do not hesitate to contact me. You can email me anytime or if you choose to follow my blog leave comments and I will respond. My email address is alyssabowman81@gmail.com. Take care!!
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Dear Tricia,
I am so grateful to you for sharing your feelings and your fears. It helps to understand the disease at a very human level. I have two distant friends with MS, but never realized the complexity of the symptoms. I will keep you and yours, close to my heart and in my prayers.
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