So far the Covid-19 crisis has changed my life in manageable, if uncomfortable ways. The things I’m grieving that in another life might have felt like worst-case scenarios for a world-traveling, party-girl just trying to make the most out of life with MS, seem trivial and first world. Dinners out, some trips, some work, some time with friends, some time alone. The first arms I will run to when this is over will be Jazmin’s, my hair stylist. No offense, Mom.
My MS is being impacted in ways that will only be measurable when this is long over. I’m missing physio and massage therapy, the DMD I was supposed to start is being delayed, putting some much needed health-hope on hold, and my attempts at fasting look like—well—the exact opposite of fasting.
I already work from home most of the time; and if I’m being real, I was always more of an indoor girl anyway. (Check my complexion for the receipts.) But, The Banker is banking from home now, too, which means I’m scheduling my morning smoothie-making around his Zoom calls and reminding myself that this is ‘our’ apartment, not ‘my’ apartment.
For now, I feel like I’ve adjusted to big changes and everything is under control. But if having MS has taught me anything (it’s taught me lots of things), it’s that there’s no such thing as control, change is inevitable, and chaos is normal.
Uncertainty is something we’ve all dealt with at various points in our lives. But we are not conditioned to embrace the purgatory of not knowing. Uncertainty drives our brains to make sense of what’s going on; and for many of us, a lot of worst-case scenarios are being cooked up as we try to fill in the blanks about what comes next.
Which isn’t to say we aren’t facing some actual worst-case scenarios right now.
The majority of my own experience of uncertainty and catastrophic daymares comes from having lived my whole adult life with MS; a disease that can, and has, stopped me in my tracks with things like periods of sudden blindness and degrees of paralysis. Lately, waking up and turning on the news to see what the hell today’s gonna be like, is reminiscent of waking up with MS and scanning my body, checking in to see if I’m going to be able to walk, or move my arms, or see.
Sometimes—not always—but sometimes, my worst-case scenarios have come true. Sometimes, the worst thing I could have imagined at the time, came to pass. Disability stuff for sure, but also personal disasters like breakups, and job losses, and deaths of loved ones. Shit I told myself I’d never be able to overcome. But I did.
I have already survived all of my own personal worst-case scenarios.
And, I’m willing to bet my doomsday stash of Crémant and Miss Vickie’s that regardless of whether you have MS or not, you’ve survived more than one worst-case scenario of your own.
Every time I start to spiral about what MS is going to throw at me next, I think of the really hard stuff I’ve already adapted to: the lifestyle changes I was convinced I couldn’t handle, but did. Knowing that I slayed those personal disease-dragons is usually enough to convince me that I will be able to do it again, and again. And even when I can’t fully commit to believing in a manageable outcome, I can at least acknowledge the possibility of one, and sometimes, that has to be enough.
If you’re alive today, survival is in your DNA. Humans have been overcoming unbelievable adversity since forever. We can adapt to extraordinary circumstances. If you have MS, you already know this more than most.
You don’t have to pretend that any of this doesn’t suck. In fact, I’ll say it for you: This straight-up fucking sucks. But, as you wait for things to get better, knowing that they may also get worse, trust in your resilience and ability to adapt.
You can do hard things. You’ve done them before.
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24 thoughts on “How To Manage Fear Of Worst-Case Scenarios”
that was really great. thanks
I take comfort in remembering Edward Jenner who developed a vaccine against smallpox by injecting the pus from a cowmaid who was suffering from cowpox. There are hundreds of scientists out there. One of them will observe a weakness in the coronavirus and learn to exploit it, to develop a vaccine or a cure. I have similar expectations for MS.
I’m less optimistic about MS, but yes. The best minds in science are racing to figure this one out.
Well put, Ardra. This state of “not knowing” does suck big time. I can deal with the fears during the day by staying busy. But at bedtime, I put my book down and my head goes into the “what if…” and “worse can scenario” mode. When I was in grade 9 our English teacher was old school and believed that students should memorize and recite poetry. Last night I focused on that poetry, still in my long term memory. And I recited “the Highway Man” and Kipling’s “If” in my head. (Husband would not have been impressed if I’d burst out, “The moon was a ghostly galleon, tossed upon cloudy seas…”)
I usually count in Spanish when I can’t sleep, but I like your poetry idea much better. I memorized The Lady Of Shallot in grade 9. I wonder if it’s still in there somewhere…
I keep telling myself I can get through this … I have already had to change so many things in my life. It is my life to not make plans and be prepared to change any plans I might have …
It is my birhday tomorrow …a big one too 60… but like my dad always said’just’ another day.
Never got excited about birthdays but I do want cheese cake this year. I will tell my husband or caregiver that he is…
I feel sorry for the people who are getting sick and dying and I don’t want to get it and die.
So I pray a lot…..and hope for the best.
Thank you for commenting and a very happy birthday to you! I love birthdays and believe in celebrating every chance we get. I hope you get your cheesecake and find something joyful in the day.
Stay home and stay safe.
We do with uncertainty everyday and we’ll certainly get through this but gosh darn ITIT’s a pain in the butt. But again a skill I’ve been practicing for 15 years now so I should be good at it.So long as the liquor store is still open everything will be okay ?
Well said and a great read. You are one of two sites on Instagram I read regarding MS. Your stories and information are good and you make me laugh! Keep it coming. Stay safe.
X0-(from a distance)
Thanks for following Susan. Would love to know who else you follow!
Actually now that I look at my IG, Elanas Pantry was my first when I was diagnosed. Then Selma Blair. I also just started Staying Healthy. Not blowing smoke up your behind but I like your humor and how you say it like it is: F*cked up. But here we are trying to make the best out of of a FU disease. At least I can still laugh and see humor when I trip over the line they just painted on the cross walk.
Hey take care and be safe. Now we have something to take our minds off MS. Kind of. ?
What we should do changes daily with this virus just like our bodies change daily because of our MS. We never know what it’s gonna be in the morning. we can handle that cause we’re used to it. So long as the wine keeps flowing and the liquor store stays open everything will be okay. After all we’ve been practicing.?
I’ll drink to that.
We are locked down in our winter home and have stayed because the response to the virus is almost unbelievably strict here and we feel safer. My 84 yr old husband broke his hip Fri night. My beloved caregiver. He’s in a locked down hospital an hour away and after successful surgery will be undergoing very intensive rehab there for 10 days. So lucky to have 2 great daughters. One left her family who have been under a strict shelter in home for 3 weeks, to drive 6 hours through a terrible storm to be with me since my progressive MS leaves me unable to live alone. My other daughter is teaching online and communicating with hospital officialdom so We can all make the best and safest choices for his care. We have become acutely aware of the medical people on the front lines giving the very best care in spite of being short handed, short of supplies, working 12 hour shifts and fighting to stay healthy and on the job. We will have many very difficult choices to make in the coming days, but the help and concern of friends who all have their own fears, problems and worries has been overwhelming. My MS concerns fade far into the background during these days of living one day at a time.
Wow, Edie. Thanks for sharing. That is a tremendous amount to be dealing with. Holding you and yours in my heart.
I’m extremely scared. I have primary progressive MS & we are at a point where nothing is working. Even just to help with the symptoms. I actually just fell broke a vase. I think it’s time for the electric chair lol ? I mean motorized chair but I call it the electric chair lol. I just feel like this horrible monster is taking over I am totally fighting it but the more I fight the more it kicks me in the ass. I guess I’m in a place where I’m scared what is going to be.
Thanks so much for commenting. PPMS is definitely scary and I’m sorry to hear you’re struggling right now. Remember that the chair isn’t the enemy, it exists to help you and will enable you to do more things.
Sending you love.
Thank you so much for the encouraging words. Yes I’m a fighter and it could always be worse! Tomorrow I celebrate my 45th birthday. Just my husband and I but we will party. You know I will have to drink to turning 45!!!
Well I liked your blog, now not so sure, I mean how can anyone save a bottle of Crémant, I did not think it possible! I have had almost six good years, well far better than at my worse. I too am in fear of what the future may hold for me, each winter it seems I walk a little worse, but then as summer passes I’m better. I find reading about other peoples experiences with MS helpful as it helps me and then to hear other people dealing with what I deal with or dealt with does help me deal with my own stuff. I have had a few bottles of sparking Riesling from Vineland many years ago, which were actually good. Sadly taking LDN has taken a toll on my drinking, win some lose some!
Oh, Daniel. Did you think I only have one bottle of Crémant?!
I was diagnosed a week ago. I have searched for this diagnoses for years. I thought I’d feel some semblance of relief at knowing what I already knew. But all I feel is fear.
Hi Jessica. Thanks for commenting.
I’m very sorry to hear of your diagnosis. It is completely normal to feel fear with this kind of news. You’ve got a lot to process.
That said there are better and better treatments all the time. My advice to newly diagnosed people is always to find a doctor that you like and are on the same page about treatment philosophy. Do your research and become a knowledgeable and informed patient.
This is a club you never wanted to be a part of, but it’s full of great people who can show you there is life after MS.
Hang in there. You can do this.
Today, I walked three km to get Chinese food and shop at the supermarket. It struck me that the multiple MRIs I’ve had was the right training to stop me from touching my eyes, nose and mouth. When I lie in the MRI scanner for forty minutes to an hour, I can’t touch my face, cough, sneeze or pee. All these things I can’t do in case people around me get frightened thinking that they will be exposed to the virus. I can pee but that will mean a different kind of exposure.