A JOURNEY WITH MULTIPLE SCLEROSIS: A GUEST POST WITH NICOLE RYAN

THE FOLLOWING IS A GUEST POST BY NICOLE RYAN. IF YOU’D LIKE TO CONTRIBUTE TO IARCM, FEEL FREE TO GET IN TOUCH HERE.

MS is a ride. That’s really the baseline of any diagnosis, I think, really; the realization and understanding that life is malleable, ever-changing, fluid. The visual of life as an amusement park and MS being one of the rides, like a tilt-awhirl or a roller coaster, resonates with me on a lot of levels. I like that. It’s a thruline concept for me. It allows for a feeling of consistency among the inconsistencies that life brings. That MS brings. That anything that upheaves a world you thought you understood brings. Such a visual metaphor lets life be and create stories out of its endless outlets of entertainment. Formerly simple tasks make getting ready for the day a very slow process that is amusing on paper. Sometimes in person. Tying shoe laces is out; I prefer slip-ons these days, which feels especially blasphemous as my old self wore 4” heels religiously for decades. Showers are usually brief and unfortunately chilled. The happy accident of a low-temperature water heater and really early mornings is a blessing in disguise. Despite my adoration of hot water, steamy showers muddle my brain circuitry and I am knocked out with bouts of vertigo and dizziness. I fall a lot. Rather, I almost fall often, and list and lean and, if left unattended, walk in little circles. One of my feet has shrunk almost a size and no longer matches its partner. It’s fun to watch me, so I’ve heard. Like a baby deer learning to walk. The ride of it all is the “tie that binds,” so to speak. Of my thoughts. Of my emotions. And where they connect, and how, and when, and why. It builds a mental map, complete with a personalized legend for the topographical map of neurological junctions and intersections I am almost always navigating in my head. Which ultimately is, for me, what MS — that ride — is about.

Cannabis has been along for that ride since just before things got noticeably physically different for me. What no one outside of my marriage realizes, which is incredibly frustrating for us both, is that things with me were different long before then. What no one outside of myself realizes, which is excruciatingly painful in other ways, is that things with me have been different longer than that. I had a boss early on in my career once who directed me to “be a chameleon” with his clients. In hindsight, with a giggle I find the irony in the sentiment; I don’t think that helped me maintain a stable sense of identity. But I drank a lot then, was proud that three hours of sleep a night and a 3-mile a day run kept me spry and fit, and I traveled and worked constantly. There are a lot of factors to keep in consideration when I think about the spiraling trajectory of my health. Leaving all that darkness to unpack another day, it will suffice to say that my personality — notably one with an academic and sharply contrarian nature that I once touted proudly — systematically unraveled along with whatever kept my limbs together. Like the myriad personality sheaths I had once been able to intellectually orchestrate to appear successful, or attractive, or witty, or powerful (to name just a few), none of my once characteristic physical attributes were relevant to the life I found myself living in anymore, either. A tight butt, thick legs, and sinewy arms melted onto a notchy collarbone strung up over big boobies mean nothing once you’re married to a non-superficial human or are depleted of the energy to function.

MMJ, my loving acronym for medical marijuana, or cannabis, or pot, or weed, or whatever you want to call it, does a lot of different things for a lot of different people. It’s subjective; personal, experiential. In college, one of my two majors was Psychology. We spoke about and explored and researched numerous kinds of mental health treatment options in both our studies and our work. Exposure therapy was one of the methods used in the practice to confront anxiety-based issues. Knowingly, it is once how I described how I use MMJ to rewire my brain. While this garnered a reaction of horror, I was explaining this as the off chance saving grace that it had become in my life.

According to Wikipedia, exposure therapy “involves exposing the target patient to the anxiety source or its context without the intention to cause any danger.” Moment-to-moment since an aggressive MS flare-up a few years ago, I am overwhelmed by an intermittently veiled, wholly pervasive, physical pain. My brain and body are mis-wired, to be candid in colloquial terms, so any emotional upset or heightened feeling response I have also triggers the same unpleasant sensations in my body. Cue the subsequent confusion and anger that inevitably ensues. My vision dims — literally the feelings and thoughts racing through my neural and nervous systems that are trying to stop the onslaught of torrential pain cloud the space behind my eyes, and the sensory input overload on my misaligned systems typically results in some sort of bodily breakdown. It can be quite a mess until all the pieces gets sorted out. Sometimes I literally overheat, emitting heat in pressure zones erratically until I burst, like the old cars I remember driving by on family trips back east on the freeway in the summer heat of the 1980s. Or parts of me will suddenly freeze and I am instantly disconnected from the world, unable to hold a thought even just to say to nearby companions that I am, in fact, cold. My limbic system sputters silently in the red zone, rabidly preoccupied with attaining bodily safety until it finds warmth. Sorting through all that data is exhausting, and probably why humans evolved to have some systems run on autopilot. With even one out of whack, my gait feels not at all unlike it looks when the girl in TOMORROWLAND unknowingly winds up knee-deep in a pond when the pin loses its juice.

MMJ slows my system down so that the torrents of emotional and intellectual turbulence that come up in those moments aren’t so scary. My body functions can be slowed down to a snail’s pace so I can see all the pieces of what’s happening, the way a you can see more of the insect ecosystem when you move slowly and low to the ground. Or how a slow-motion capture camera works. The extreme mental concentration and focus it takes to reconfigure your neurological system in live-time defies the stereotypes of potheads past. It’s a new kind of resilience, of strength training than I’m used to, but with MMJ it’s become more of a choose-your-own-adventure ride.

The Buddhist Psychologists I study speak about choosing your path, your perspective. How life is a series of choices to be lived. How we’re one spirit interacting in simultaneously existent human and animal and matter forms. All energies. Most of the ideologies are like religions in that their positivities all tend to fall apart spectacularly when they’re scrutinized with intellectual procedure. Yet somehow they feel as real and powerful as when you grasp how gravity interacts with every day life, or how unrequited love in junior high hurts worse than a softball to the face. Most health theories I’ve found to be like that, too. The more research and scholarly digging you do about anything, the more ammunition you can acquire for any perspective you want to have. MMJ can be the greatest thing for pain or the craziest pain treatment alternative around. Who’s to say, really? I was stymied. I get stymied still, when my expensively trained brain wires short-circuit when my body is emotional outraged. Which, I guess, is a nice reminder from my MS that some wires are still crossed. I’m a work in progress; there’s a lot to unwire. The more than a dozen specialists who were treating me initially never once mentioned MMJ as an accompaniment for the transformation I was about to embark on. They didn’t give me a heads up on that, either, though, so … it always come back to this: At what point do we start trusting ourselves?

One morning, my husband looked at me with loving curiosity, his eyes wet but strong and contemplative. We had been out; every Friday morning we drive into the mountains together to clear our heads, carve the canyons in silence and active meditation, and wind up at a storied tavern for coffee and breakfast. He relayed to me that a friend we’d met there had seen me walk outside with a cane, take a puff of our other friend’s joint, and moments later casually walk back into the restaurant nonchalantly carrying my cane while I chatted away and laughed in my big, trademark, animated manner.

I’m not “fixed.” I don’t know if I will be “fixed.” I know less now if I want to be “fixed.” But I know I laugh again. Loudly, again. And smile and joke and be smart and thoughtful. MMJ gave my brain and body the space — literally, on a cellular level — to start to heal. Through all of this, the one thing that has never wavered… is the pain. But I think we all have some form of it. Emotional turmoil, physical discomfort, social strife. It’s all the same, ultimately. Part of what my memoir is about is the traumas I’ve endured, and how they led to some of the more colorful moments of my life. After a lot of soul searching, I’ve concluded that most of those moments I wouldn’t change, despite whatever pain is associated with them. I’m certain that that rollercoaster played a role in my MS. Too much is connected, too much of the same language is crossed over between academic disciplines and social judgements for it all to be a coincidence. I choose to adhere instead to the problem-solving principle of “Occam’s Razor”: “The principle can be interpreted as stating that among competing hypotheses, the one with the fewest assumptions should be selected.” So I asked myself again — at what point do we start trusting ourselves? It’s all going to be ok — or it’s not. You’re going to feel a benefit from MMJ or not. Do you trust yourself? Then I think you’ll be alright whatever you decide. Whatever lemons life gives you.