Lately I’ve been waking up in a good mood, which is noteworthy because normally I wake up crusty, even a little bitchy. I can hardly be blamed for being unpleasant following a spastic, or painful night. Multiple Sclerosis doesn’t sleep and it doesn’t want me to either.
But there’s something about October that gets me out of bed without shaking my fist at the sun. More than pumpkin everything, new boots, and autumn leaves, The Banker and I tend to travel in the fall when the weather is manageable and so are the crowds.
This October’s plan to celebrate our anniversary in Paris was paying dividends for weeks. When I couldn’t sleep, I was planning my travel outfits. In anticipation of a visit to Versailles, I was nerding out on the life of Louis XIV. When I was shoving kale into my smoothies I was promising myself out loud that I would soon be consuming my body weight in camembert. I had effectively turned 5 days in the future into a part-time hobby in the present.
A past trip to Paris: happiness = a cheese trolley and unlimited barrels of wine.
So you can imagine my heartbreak last week when I opened an email informing me that the too-good-to-be-true discount airline with whom we’d booked was in fact, too good to be true. Bankrupt mother-fuckers. With our trip just 16 sleeps away, my new hobby became cancelling reservations, dealing with insurance claims and trying to get at least some of our money back.
Why are you telling me this terrible tragedy? I clicked this bait to figure out how to be happy with MS and this is literally the saddest thing I’ve ever heard. #thoughtsandprayers
I know. If you’re looking for me I’ll be in all black and a lace veil until my birthday, 94 days from now. The point is, all this sadness got me thinking about how fast I went from happy with anticipation to covering the mirrors in mourning; and I realized, that yes, my would-be trip to Paris is a big fat bummer, but I’ve been consoling myself with the other things I have to look forward to, like the bottle of wine I’m gonna drink tonight, the Halloween party we can now attend, and the sweater I’m gonna buy, because my trip to Paris just got scrapped and I deserve it.
But wait, if you have MS how can you be happy? I’d rather be dead than have a disability, and you didn’t even get your Make-A-Wish.
Many assume that people with disabilities couldn’t possibly live full lives, that they must be sad all the time. That’s messed up. When I was first diagnosed, I too assumed this life would suck. I mean, that’s what we’re lead to believe. And it’s true that MS sucks. MS makes my life hella difficult.
But a difficult life doesn’t have to be a miserable one.
Just as disability and disease don’t determine a sad and sorry existence, perfect health doesn’t guarantee happiness. According to some unreferenced internet psychology, when it comes to happiness the same strategies apply to everyone, regardless of ability, and have nothing to do with career success, wealth, fame, power or even that thing we’re all told you’re nothing without…your health.
The happiness recipe:
Someone to love
Society has been known to send the message that people with disabilities are less deserving of love, and even that people with disabilities don’t have the same need or want for love. Maybe you’ve said this to yourself. This is some ableist bullshit.
You can love your kids, your partner, your parents, the friends that are your family. Pets aren’t people, but if you’re struggling to find love amongst humans, even your cat is a good place to start (but like, maybe get a dog).
Having someone to Netflix with, someone who’s on your team, who hates the same people you hate, reminds us that we’re not alone, and caring about someone besides our selfish selves can take us out of our own suffering. Love isn’t just a nice to have; it’s a fundamental need to have.
Something to do
When I stopped working full-time, the first thing I did was start a list I called Things I Did When I Wasn’t Watching Oprah. I knew I was facing an identity crisis and needed to reinvent myself. What we choose to do with our time reinforces and affirms who we are.
My list might look cool now – sassy blogger, world traveler, rollator super-model – but when I was first figuring it out, my list literally had things like, tried a recipe, read a book, used a fire extinguisher. It doesn’t matter what you do, only that whatever you choose to do is just that – your choice; something that matters to you.
Finding your raison d’être can be extra challenging when you have a chronic illness like Multiple Sclerosis. MS cansteal your purpose. MS can rob you of the physical resources needed to do some of the things you love most. It’s not always easy, but the more we can figure out how to make empowered choices, even little ones, the less we feel controlled by external forces.
Something to look forward to
I don’t know about you, but I spend a lot of time in Anxietyville, contemplating worst case scenarios. And while I still suck at meditation, you don’t have to convince me of how thoughts about the future can influence the present. Fortunately the power of anticipation can also be harnessed for good.
The standard remedy for anxiety is to live in the present, but sometimes the present straight-up sucks, and that’s when mindfulness needs to STFU. Having a stash of future rewards you can call to mind can get you through rough moments and bad days. It doesn’t have to be big stuff like trips to Paris, either. If I’m being real, most of my future-reward daydreams are about clean sheet day, or Miss Vickie’s chips.
MS is tough. I will never tell you to count your blessings, keep a gratitude journal, or smile through your bad days. FTS. I already told you I stopped listening to Oprah. You are entitled to every negative emotion that comes with this shit-show. Grieving the losses that a progressive debilitating disease brings is healthy and necessary for well-being.
So, I will continue to worry about the future, rage about the present, and lament what this disease has taken from me. But I can’t live there. It’s exhausting. Most of the time, I’m setting realistic goals, making plans, and chillin’ with my homies; doing the things that keep me going, that remind me – an MS life can be a good life.
So, who do you love? What are you doing? What are you looking forward to?