We are Lucky to Have Each Other
You and I are SO lucky to have each other, right here on MultipleSclerosis.net, right now. And by right now, I mean I feel it at this moment I am writing, and I hope that you feel it at the moment you are reading this, and any moment that any one of us clicks a link and lands somewhere on this site. Because all we have is now. No one is promised tomorrow.
I live in the moment because the future is uncertain
I live almost completely in the moment. People close to me are probably sick of hearing me say that, but it’s an important part of my own MS story. I’m not embarrassed to keep saying I LIVE IN THE NOW and I know a lot of other people with chronic diseases that have said the same thing. It can be a long time coming, maybe years after we get the initial wallop of disease, a punch so hard that we can almost hear a fights referee counting to ten over our pudding heads right before we pass out. When we come to again, we can live for months or years in abject terror about a future that has suddenly gone dark.
I had to figure it out on my own
After I recovered from my first MS attack, the near future was what frightened me, the thought of death overtaking me within a few years. When those three years passed and I was more than okay, the fear subsided, no thanks to medical professionals. They gave me no follow-up plan after discharging me from the hospital, no referral to a support group, no literature for my edification. I was on my own to figure it out.
I need heart-healing, too
Kind of like teaching a toddler to swim by throwing her in the water where she has to kick her legs or drown. Or training to be a Navy SEAL. It might not be a good analogy, but some things about it really struck me. I read that more SEALs died in training than in combat between 2013 and 2016.1 I also read a possibly apocryphal story about a SEAL instructor who was teaching the guys to hold their breath longer in the pool and held a recruit’s head underwater, drowning him. If true, such harsh, tragic initiations — including how MS presents for each of us — seem to mean that what doesn’t kill me can really mess with me for the rest of my days. Not only do I need to try (and sometimes fail) to treat my game legs and numb, weak hands with various therapies, I sorely need heart-healing that only a clutch of fellow fringe-dwellers can give. I feel the kind of power that comes from people simply saying a kind word.
Discovering online support
Also for me, knowledge is power. To fracture the words of a hit tune from SHOWBOAT (1927): Fish gotta swim/birds gotta fly/I gotta learn a lot more till I die. I started doing my own research for a few years before climbing out of my self-imposed isolation and discovering an online support group. I’m a naturally sassy little nugget, and I found kindred spirits in my small WebMD group. I used my research skills to answer patient questions while we all grew closer, laughed, vented, and learned. And when the site revised the look and mechanics of the forum page, much to the confusion and consternation of this little group, the members fled and created a private Facebook group, where we resumed our relationships.
Even after doing all of that — the research, the group bonding, the recoveries from flares and failed relationships — I still don’t feel like I’ve got the world by the crotch. But on the bright side, I’m not floating face-down in a pool with my lungs full of water, either. Luck or design?
Words of wisdom
Here are a few words of wisdom about luck from notable thinkers in the 20th century:
“You never know what worse luck your bad luck has saved you from.” — Cormac McCarthy
“The harder I work, the luckier I get.” —Samuel Goldwyn
“I think we consider too much the luck of the early bird and not enough the bad luck of the early worm.” —Franklin D. Roosevelt
Focusing on the present moment
My personal favorite is advice I was given decades ago during the education phase of my fiction writing. I was writing a lot, but the two times I sent off my best short fiction manuscript for publication and got rejected, my workshop teacher said: Don’t worry about publication, that opportunity will come along when you least expect it. Focus on the writing. When the opportunity comes, be prepared with your best work. He was right, that’s exactly how it happened. Even if I never get a book published, I’ll have work that shows what the top of my game looks like. That can only come from living fully in the moment.
This MS community makes me feel lucky to be alive
My takeaway as part of this MS community? I believe we make our own luck by gathering here on these pages. It is the result of making that single effort. As a moderator who reads many, many posts each day, I see the beauty of patients reaching out to comfort others. I see broken spirits confess their stories and not leave until they’ve personally responded to another reader in the same thread. Whenever I see the individual and the community nurture each other, it makes me feel lucky to be alive.
How many specialists did you see before finding "The One"?