The story of a day I’ll never forget.
It was a late afternoon appointment with my Neurologist. 4pm to be exact. I had just received 2 ½ hours worth of MRI’s the month prior and this was the day we landed on to discuss the findings, if any. I sat in the fluorescent light-filled room, no music to set the tone or phone in hand to distract. I was too tired and consumed by my thoughts to let anything else take up space in my mind.
As my doctor walked into the room with a folder in hand, I can tell that he too is consumed by thoughts. He seemed as though he had a long day as I knew I was his last patient. He met me with a gentle smile. Well, we were in masks, but I could tell he had a polite closed-mouth smize under there from his kind eyes. Perhaps he was tired too.
He pulled up the screen and we started analyzing images of my brain and spine. I patiently listened to him as he pointed out these white spots, describing their characteristics in the most scientific of terms. After getting a pretty in-depth educational breakdown of the brain’s biology, it felt like an hour of me listening for the two big letters to make their way out of his mouth and I had yet to hear them. A new thought entered the chat- Maybe my biggest fear wasn’t true? So with that newfound ounce of optimism, I had the audacity to finally break my silence and intersect his medical lesson…
“Doctor, are you saying I have MS?”
He broke his gaze of my skeletal scans and turned to me with now empathy in his eyes.
“Yes, you have Multiple Sclerosis”
I’ll never ever forget that moment. I felt like I immediately exited my body and hovered over myself as to get a better listening angle but instead, I just entered a tunnel of muffled words. Time stood still but minutes kept moving.
At some point, I had unconsciously removed my mask, emerged from the tone-def tunnel I was in, reconnected with my body, and slowly started to join in on the conversation. The realization that tears were streaming down my face had hit when I had to stop them from continuing south of my neck.
I’ll never forget that feeling of receiving a diagnosis you know has no cure. I've never known fear like that. And yet, at the same time, this strange feeling of relief because I finally knew what was wrong with me after 3 long years of countless doctors appointments, searching for answers. I had a million questions but none of them mattered in that moment.
“Kim, this isn’t going to define you.” he said.
“I’m going to be your coach and you’re the player. I’m here to help you beat this game.”
Although he verbally assured me I had his support, I left that office alone and numb. How the hell was I going to make a 30-minute drive home? It never occurred to me to ask my husband to come with me just in case. I suddenly realized I’d been so used to searching for an answer, I never really thought I’d get it. But this time was different. The time had finally come. I sat in the car for an hour before I could gather myself to drive home.
“THIS ISN’T GOING TO DEFINE YOU”
Words I’ve desperately hung on to for the past year as I’ve had to digest my new reality. It certainly feels like MS has taken over my entire being. There’s not a minute that goes by without thinking of MS. It’s part of who I am now. The good, the bad, and the in-between. It’s wild. My entire perspective on life has changed. The way I navigate through my day is determined by how my body is feeling rather than my to-do list. I’ve never been more grateful for the good days because I don’t know what tomorrow will bring. I live more in the present than ever (or at least I really try to). Any problems I previously held space for no longer hold residence in my life; I have bigger battles to arm myself for.
My doctor was right. MS may not “DEFINE” me. I’m still Kimmy Joy.
BUT, it most certainly has changed my life forever and is REDEFINING what life is for me. Day by day.
In an unconventional way, I guess I can compassionately say I’m kind of grateful for this diagnosis as F’ed up as that may sound. It’s given me a majorly uncomfortable push into a more purpose-led path, and that’s intriguing. It’s summoned my inherent nudge to heal and help others heal. It’s forced me to dig super deep into my soul and operate from that space.
I’m not naive to the fact that my road will be rocky, but there is now no room for insignificant nonsense. So, dare I say I’m kind of trusting of what's to come now that all the mundane doesn’t matter to me anymore?
Yeah, I said it! “
I trust the Universe didn’t give me anything I can’t handle.”
And that’s all I can do is choose to look at the positive because the other option is really, really dark and scary. I do dip my toe into that murky pond every now and again, (it’s easy to do on my bad days) but it’s not a safe place to be, especially on the deep end. I’m doing my best to stay grounded.
So with that, I will lovingly honor this day every year, May 25th as my MS Diagnosis Anniversary -aka- the day that has REDEFINED my life.
XO,
Kimmy Joy
