I get antsy in support groups. Even after 30 years, I’ve not learned how to be at ease talking about my relationship with MS. Very recently I read Devin Garlit’s “essays” here. I feel calmer rather than anxious when I read his stories. I don’t know why exactly, and I’m not going to try to figure it out. It’s just good for me. So Devin’s writing inspired me to try writing my own stories. I keep a journal but I use it to vent without hurting or frightening anyone, like raging at the sky. This story has found its way around my journal’s passcode.
My bone of contention with MS, my disease-long unrectifiable conflict that tortures me to tolerance, is the harsh dichotomy between what I was, my life’s plans yet to be realized and what my reality really is today. Here is my experiment with letting the MS cat out of the bag, my reluctantly sharied secret, my exhausting inner battle. I’ll try exposing the facade, unveiling what’s behind the masks I’ve assembled over many years.
I know we all wear masks at various times, whether we admit it or not. To get by at times, our culture demands we develop the ability to present a version of ourselves unlike the truth we may be experiencing. We don masks of pleasure when we are in misery. Masks of love when we are afraid of change. Masks of success when we want to participate. Masks of anger when we are in pain. My mask is of competence and independence, humility and acceptance, strength and lightheartedness when I really feel helplessness, dread dependency, fear invisibility, fear being forgotten and left behind.
Exercise. I used to do it hard every single day. Lived it 100 percent. Rose early. Slid into exercise garb like spandex leggings textured somehow to look and feel like real snakeskin. I wore Avia aerobic sneakers in the 80s, sometimes knit leg warmers until they were no longer cool. Every day at the gym, I’d start with the treadmill and some weight training, take a high impact aerobics class with my dynamic favorite instructors from South Africa who used to call out “BREATHE……or you will DIE”, simple as that. Afterwards, drenched in workout sweat, I’d return to the weight room. After my routine, I’d collect my baby girl from the nursery and head to the next item on my agenda, the grocery store, drop off my husband’s dry cleaning, visit the library or coffee with a fellow mother and babe, all in my snakeskin leggings, avias and an oversized off one shoulder sweatshirt a la Flashdance. By 10:30 am I was home, baby nursed and napping, groceries stored, dinner planned, laundry folded, beds made, I’d pay and record bills on Quicken, paint, sew, read or talk to friends. By 2pm, my other two would be home from school and the second phase of my day began with playdates, carpools to gymnastics, sports and ballet, trips to the library then home to cook and serve dinner, bathe and read to three sleepy children followed by conversation with their sleepy father. I carried on this regimen for seven years in Atlanta. Created another regimen, amended as required, for my children who were older when we moved to New Jersey. Ten years later, I devised a third daily gym, parenting and lifestyle regimen when we moved to Maryland.
I learned I had MS after the first year in New Jersey. I had symptoms in Atlanta for a while but attributed the tingling and numbness in my legs to working out too hard. The fatigue I blamed on my relentless enthusiasm for everything about being alive and working hard to give my best self to my three exuberant children, not to mention my cache of creative projects and relentlessly wonderful menagerie of friends. The symptom that finally got my attention in amidst all this was when my vision began affecting my tennis game!
Today, 30 years into MS, I’m 66. I was told in year 15 that by my mid 60s I may begin struggling to remain ambulatory. By that 15 year mark, barely 50, MS had slowed me down, made me clumsy, set me off balance, given me double vision, stolen much of my ability to play the piano, guitar, harp, flute, had stiffened my legs, tightened my fingers, weakened my arms, and more but I was determined it was not defining me. Looking back, I think indirectly and undercover it did define me, at least for me, since as more symptoms appeared and disability increased, it had become a hidden full time job trying to appear I had it all under control.
It’s just impossible to forget all I used to do. For years, I’d measure my post MS self against the standard I set pre MS. Finally, and only recently, I have begun to recognize the self defeatedness of that contest. As my future ensues and I know I grow still further from my former self toward an unknown me, I have to be okay with ever shifting new priorities. For so long, only in private self whispers, I’ve graded the MS’d me an inferior version.
Time. Sometime along the road forced to travel, I began being late everywhere and earned the nickname Queen Late-ifah. I couldn’t accurately predict how long it was going to take me to get ready. I’d save my shoes, my favorite part of my wardrobe, for last. I told myself they were the hardest item to put on because my feet had such resistance to being in them. Truth was, everything was challenging me…buttons, zippers, snug lycra leggings, balancing on one leg to put the other in a pair of pants, awkwardly turning the round brush in my right hand while managing the weight and direction of the hairdryer in the left, closing the clasp on a necklace, matching the tiny back on an earring to its post. The hustle bustle of getting ready on time made me dizzy and unsteady which slowed me down more. My adrenalin would start pumping, lateness anxiety would set in, legs would lock, and then I’d fall or trip.
Many times, getting ready for some appointment or party or lunch date, I’d fall on the stairs, over the hairdryer cord, or just trip myself out of the blue because I wasn’t focused. I’d chant in my head “…focus, focus, focus”…” just like when I was working hard to coordinate my stubborn walking legs “…think left, step, think right, step…” My time awareness was slipping. Sometimes, I lost track of time altogether as if I was in a suspended state, unaware of what time it actually was and how long my preparations actually took. At first, my late arrivals were greeted with “Yay, Queen Late-ifah!!”. Later, friends, family, doctors, everyone, grew tired of my lack of punctuality and began to hold me accountable. Since I couldn’t speak of my challenges, my explanations were heard as annoying excuses. I couldn’t figure out what I was doing wrong or stubbornly wasn’t willing to adjust my routine. It became easier to just stop setting up events. I began my withdrawal and it has continued to this day.
There’s more in between then and now, of course there is, but I gain less and less from the retelling. I don’t like to think of myself as a victim…of MS or anything. Life has handed me some bum deals. Isn’t this true of most of us? It’s possible that maybe the bum deal for people without bum deals is the lack of bum deals! No bum deals, no opportunities to evolve, to learn from difficulty. I readily confess I have periods of intense self doubt when I question my choices, my wisdom or lack of it, my worthiness, the significance of my contributions. I want to fall and land softly. I can think of nothing soft enough. Soon this kind of thinking will grow tiresome. I stop. I remember I’m supposed to be flawed, I think about how even with MS, I’m never bored, never flat or uninspired, never lacking for ideal, still have dimension and texture in my life, color and laughter and tears.. Though I do miss my old sense of urgent wonder and having the capacity to respond and engage. I respond differently today, quieter, more philosophy than adventure, less immediacy, more pensiveness. I’m more inclined to research and read rather than throw on a jacket and do. Today, this is of what I must be made. Something deep makes me push onward. I’m glad it’s there. It’s different than I expected, but it’s my story. I’m making it and now I’m telling it.