Taming the MonSter
Taming the MonSter ~
Most people can’t imagine referring to their MS as a gift, but I do. In an odd way, I am thankful for my MS and how it has forced me to re-invent myself a few times over the last 14 years. Michael J. Fox has also expressed similar sentiments about his life with Parkinson’s.
I am 48, a "late-blooming" poet/writer from Texas who has extreme passion for knowledge and dabbles in all things creative. I have a life-long background in music, theater/arts, and I am a 1990 graduate from The University of North Texas with a B.S. in Hotel/Restaurant Management. I loved my life and was proud of the 14 years I had accrued as a special events planner in the private club industry – I was good at my work. Athletic and healthy (minus a few surgeries for endometriosis), I married and became a full-time stepmother of two kids until…
The storm blew in over Fourth of July weekend, 2001. No, it wasn’t just a storm, it was a MonSter that angrily invaded me and my life, playing nasty tricks with my body and brain. I had all the tests, the possible and probably diagnoses, but the third doctor’s opinion confirmed it. Ignoring my crazy roid rage, despite having just had an MRI, spinal tap and mega IV steroids, I was determined to get released from the hospital so I could make it to a 4th of July party. WHOA, BIG mistake, worst pain ever! I still can’t believe the doctors allowed me to leave!
Life as I knew it began to change slowly, yet dramatically when MS moved in. Looking back now, denial was my buddy. I still felt tough and attempted to work a few years after diagnosis, but nothing seemed to connect quite right anymore. I could feel the presence of disease, yet no one around me could see a thing because, “I looked so good”, ya know? Many people thought I was lazy, faking, or they didn’t believe I was sick…including my own family. You see, this disease affects everyone different – EVERYONE! Numb/tingly issues were weird, yet tolerable and my mobility was intact. I dabbled with a few of the DM drugs and hated all of them. I was (and continue to be) symptomatically invisible – sometimes called a spoonie - a relatable term for those of you with invisible chronic illnesses. My memory of those early years is a bit hazy as I was obviously lost and alone.
My MonSter enjoys using my brain as if it were a rubix cube. Constant twisting, it reconfigures the colored pieces of my “toy” hoping for a match, yet hope of connection is fleeting. I try to assist the beast in solving the puzzle, but the battle breaks me down and I give in to the debilitating fatigue. Let me clarify fatigue - I’m not “tired”. What this FATIGUE means is I can barely expend the energy to brush my teeth or even add 2 + 2. Don’t even get me started on how crazy this feels during 110 degree summers in Texas! My enemy is also stress…add a dash of anxiety, cog fog, mood changes, peeing unknowingly on myself, and fatigue so debilitating, the battle ensues…but I eventually began to learn how to play defense a bit better.
After many confused, ignored, depressed, volatile years, a light bulb flickered - faint, but it was functioning, telling me it was time I deal with this vile invasion - my "internal room-mate". But I had no clue where to start. I had quit working, performed the SSDI dance a few times and succeeded just as my home life was all but gone.
My husband hated…no, he was embarrassed by the MonSter. He “jokingly” called me a lemon in front of others, left my side and refused to handle any of it. There were always other “obligations” he had to attend to when the going got rough. OH, he hated it all – who can blame him? He didn't sign on for this, couldn't understand any of it, and once again…I sure didn't look sick.
Now, throw in financial strife, hysterectomy, sinus surgeries, cervical stenosis surgery to fuse a plate/screws between C3-C7 in my neck and soon a new kind of storm blew in called “divorce!” Those were rough days. Looking back, I was suffering from a painful, nervous breakdown which lasted quite a while. Not once did I consider professional counseling to help me heal – to help me purge the noise and constant conversations from inside my head. Music soon medicated me, consumed me. Then, approximately six years ago a muse crept in from out of nowhere and encouraged me to find my new passion – to learn, create, and to teach. I wrote cathartic little songs, taught myself some Pink Floyd guitar chords, sat down at my long neglected piano and played. I could breathe and it felt good. I didn’t have to perform or be perfect – just free. I had found a new form of therapy which enabled me to smile again - healing that didn't require a prescription. All the while, divorce battles horrifically ensued which prompted me to seek a therapist, one of whom I still see regularly today. I’m a big fan of “talk therapy” and sometimes, yes…medications are needed.
This re-invention of myself clicked, seemed plausible to adhere to in order to heal via creative outlets. Music, reading everything I could grab and creative writing filled me with passion and endless possibilities. Oh, I wish twitter had been around when I was diagnosed. What a fantastic support group, a resource which continues to open up doors for me and allows me to pay it forward with joy. So, can you see why I now view my MS as a gift and no longer the MonSter who once owned me? Oh sure, MS still sucks, in fact, I’m coming off a flare-up as I type this essay today - its unpredictable nature is unsettling, but this gift taught me to live better - to focus on important things in life - to find my sense of humor, ignite my passion and live despite MS and the unknown.
Does your employer provide workplace accommodations due to your MS?