By Maleah Moskoff
April 19th was the 3rd anniversary of my rare myelitis diagnosis/spinal cord injury. I have heard others call it their “crappiversary”; I choose to see it so differently, and I’ll tell you why. If you knew me prior to April 19, 2017, let me re-introduce myself. My name is Maleah, and three years ago I walked into the University of Wisconsin (UW) emergency room (ER) in pain. After being dismissed by urgent care professionals twice and told I had a virus, I grew progressively worse. A spinal tap confirmed something was not right, and it was neurological. I was beyond scared. I was not familiar with emergency care, and my life up to this point was pretty average in the accident department. Flash forward three weeks—I was in a room somewhere in the UW and paralyzed from the chest down. My neurologist’s note read: “Our best diagnosis has been a monophasic viral infectious encephalomyelitis (brain and spinal cord) vs. a post-infectious encephalomyelitis (the result of the immune system’s reaction to a viral infection).” They told me, “You’re one in a million.” Around day 21, I was discharged to an inpatient rehabilitation hospital where I would live alone, working out three hours a day with Occupational Therapy (OT)/Physical Therapy (PT).
Ok, you’ve heard this story. But what I have to share today, that many more might relate to, is being in crisis. I was isolated for seven weeks from my home, my work, and my life as I knew it. Fortunately, family could visit me. I couldn’t do life for myself. I depended on others for getting me food, bathing me, toileting me, and transferring me from bed to wheelchair. I was vulnerable. My job was to give my all for three hours in the gym with OT/PT. I did my work, sometimes in tears, but I had goals—walk again, regain my independence, re-join my family and my home. It was sad, lonely, and hard. I came home in a wheelchair, adjusted to my surroundings, sometimes felt like I was Jimmy Stewart in “Rear Window”, and I am here today to tell my story. It did not last forever, but my life as I knew it would never be the same. I have chronic pain in my back, the “MS hug”, clonus and neuropathy in my feet, BUT I can walk, and I have hope and lots of love. I have an attitude of gratitude for my crisis. It shifted my perspective on time and what is important. Less FOMO (fear of missing out) and more JOMO (joy of missing out)!
Hope can take you to places you’ve only imagined and there is no “going back.” There is a new path, a new normal. There is adjusting, pivoting, and creative changes. Acceptance is difficult for humans, but the sooner you acknowledge your situation, grieve the old way/old life, the sooner you might see the miracles in the present moment. I have days where “I am over it,” and I am sure you do too, in this present crisis. Cry, scream into a pillow (not at your housemates), draw, write, make music… find your strength in the now. “No storm lasts forever.” I have taken a long pause once before, and I can tell you a thing or two about life after the play button is pressed again. Yes, it will be different, but so are you. Embrace the “Yahtzee shake.” Enjoy the slow-down. You didn’t choose it so maybe it’s hard to be “out of control.” Slowing down feels weird when we’re so used to “go, go, go.” Busy has been glorified for too long. I’ll leave you with this. I wouldn’t change a thing. All the heartache brought me to this place. I like who I am and who I am becoming.
So next time you think you just can’t handle one more day, let me tell you something, you can and you will! Forward…It’s the way. “Not all storms come to disrupt your life, some come to clear your path.” We’re paving a new road, one that may be smoother and brighter.