AA won’t cure her illness, but the profound joy it brings helps her survive
I haven’t wanted to talk about this or share about it or even experience any of it, but I am. So, here goes.
I’m having my very first and fairly bad exacerbation with MS. It started about a week and a half ago when my toes and feet went numb. After a few days, it had radiated up my legs into my hips, and by last weekend my body was numb all the way up into my torso effecting the way I walked, sat, slept and even digested food. More than a few steps and I had to hold onto something. My doctor took away my driving privileges. I was so freaking scared. By then, I had been in to see my neurologist and GP both, I had an x-ray done of my skull, blood tests and the initial pokes and reflex tests. I got an MRI scheduled and they set me up on a rigorous steroid infusion plan. It was at that point when I notified my coach that I would have to take a hiatus on my marathon training, a tough call to make for sure. My heart broke.
Over the weekend, I tried some self-care, I talked with people who have MS whom I have actually helped in the past. I was glad for their candid feedback and reassurances. I had to sit down with my kids and tell them I was scared. My husband had been scared too, but he’s being strong for me. I went to the movies on Sunday, so afraid I would fall down the stairs but my very good friend was with me and she made sure I was safe. I felt safer, but still broken. I felt like I was coming unglued, really just coming apart from the inside out. I cried during the movie during the sad parts and not sad parts.
Monday, I started the intravenous steroids, but by then, the numbness had taken my hands. I thought all I would have left is my freaking head, with its spinning, negative messages about my new norms and how people would treat me and not dancing with my daughters in our bathroom. I decided that I need to get out of that way of thinking, so I did what you all have told me to do a million times, at least. I went to a meeting.
I was embarrassed to have to cling to the handrail as I made my way clumsily up the stairs. I tried to get to an empty seat, any one would do, before I fell over (luckily, I did not fall). And I sat between two women in the program whom I admire and love so much. There were also so many smiling faces, so much compassion in the room. I hadn’t even said anything, and already it was just like my Higher Power needed me to be there and to hear what I heard.
After the meeting, I stood strong for the first time in days, not because I could, but because I wanted to. I wanted to push back against the horrible numbness, this crippling weakness, and just stand with all of you and ask God to remove my defects, and even cry a little.
I had a nice talk with a writer friend that reminded me of things I love. Eventually my sponsor walked with me down the stairs, I spoke with a woman there whom I admire so much and she gave such magic and miracles all at once, allowing me a few moments out of my own problems to really spend some time with hers, God bless her. Then my husband gave me his arm and helped me out the door, down the steps, and to the car.
And you know what, it did not cure me. That meeting and all of its magic couldn’t possibly cure me; I have no illusions about that. Just like my alcoholism will never be cured, my MS is chronic and progressive, with no cure. But just like my alcoholism it can be treated, arrested, accepted.
Today, they took the I.V. out of my arm for the first time in days and it felt great to move my wrist around. I opted to go to my ukulele band after all and play music, just because I still could. Also, some of my feeling is back in my legs and my mobility is probably 80% improved, which is great. I still have a few more days on the infusions, and then there’s the MRI Friday on my spine. My neurologist wants me back on the MS injections again, but thankfully not the interferon this time. I did that for four years and thought I would rather have MS symptoms (turns out I wouldn’t).
Anyway, if you’ve read this far, I’ll tell you what I’ve been trying to get at by posting this long MS freak out. It’s this: I have never been so afraid in sobriety. I have never had such a feeling of utter powerlessness as a sober person, and it was truly frightening. The only other thing I can think of that comes close did not happen while I was sober; it happened while I tried to get sober. Each time I swore I would not drink and I wound up drunk, blacked out, lost. I could not ‘will’ the numbness out of my body the same way I could not ‘will’ the drink away. My fear was so gripping, so literally paralyzing. And yet, I found hope in that room Monday night, with those amazing miracles all smiling and reaching out and being who we are. Thank you, my lovely fellowship.
One final thing, just because it makes me so happy to report this, my eleven-year-old daughter and I danced to jazz in the bathroom this morning. I was clumsy and wobbly, but we danced still! I may not be fully restored yet, or even ever, but I’ll take what I can get.
And I’ll share it with others who have MS so they can know and relate. I learned that from all of you. Maybe we don’t get to be fully restored, recovered alcoholics, but we take what we can get because we couldn’t imagine getting anything less than enlightenment, joy, peace, security, hope, friendship, love, and true and lasting clear-eyed sobriety. Yeah, I’ll take that.
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