THE DIAGNOSIS
You know when you know something, but you’re just not 100% certain that it’s real. Your brain is cleverly disguising the out-right terror with a healthy dose of denial. As my mother would say, “We don’t bleed until we are cut.” In other words, until we know 100%, we don’t know anything.
It’s finally diagnosis day. I took the day off of work. I wore my empowerment t-shirt with the quote ‘They whispered to her, you can’t withstand the storm. She whispered back, I AM THE STORM.’ I was ready… I thought.
I had waited 3 months to get the official diagnosis. It had been 3 weeks since my spinal tap. I thought I had processed it. I figured I had mapped out the risk profile and road maps forward. I THOUGHT I had accepted it. What a joke that was.
March 5, 2020. Sitting in the exam room in my inspirational t-shirt, pen and paper in hand, my life changed. I blinked. My status went from “likely” to “Confirmed MS Warrior” at 1:05pm pst. Not even sure I was breathing. I nodded. I asked every question that I had prepared. I think I went into shock. My doctor, Farrah V., was kind, and supportive. She made it sound safe and comfortable. She didn’t make it sound scary or urgent or risky. All I remember is furiously writing down her directions, suggestions, and options in my notebook as she walked me through the “what next’s”.
She gave me reading materials and drug names so long I just wrote them 'phonetically’ to try to keep up. I nodded, no tears. Smiled and left with a new title. MS Warrior.
What happened next could only be described as a “shock hang-over”. I left the office and walked to my car. I felt like a zombie. Cold. Blank.
I had people to call and update. I was alone in LA at the time, so I knew people were waiting for a phone call. My mind was an abyss full of the immense amount of information I had accumulated.
First call, my dad. He was the first person I said it out-loud to. “I am officially living with MS.” Que the tears, fear, anger, and information overload. I wasn’t ready for the rush of reality I THOUGHT I had so carefully prepared for over the last 3 months. The confirmation was supposed to be a “head nod”, an acceptance. NOT a sucker punch. Why did I feel like I was suffocating? Why did the news feel more like a set-back than a verification of a truth I’d already come to terms with?” My dad gave his baby girl the only thing he could from 2,000 miles away, he gave me a faith boost. A reminder of Gods grace & mercy. He started my journey off with a prayer for the battle(s) to come.
Next Up, my mom. A beast of a woman in a petite little red-headed momma. She is a chronic illness warrior too. Has been for 40 years. She knows this process well. This woman could move mountains if they’d let her. She won’t sugar coat it, but she is gentle with reality & honestly, even if she has to smack you in the face with it. The details were relayed and we devised a dynastic plan for what I’d do next. And that was that. By this time my breathing was evening out a bit more. I was finally able to say “I HAVE MS” without crying.
3rd on the call-list, 1st in my heart, Anthony. Love of my life. How do you tell your soul mate that the future you planned and imagined, may not be what you had hoped? How do I break his hearts from 2,500 miles away? All I could think was “caution, brace for impact”. Our future changed that day. Our “in sickness and in health”, that we have yet to promise to each other, took on a deeper meaning that day. The question “is this too much?”, rang in my heart and head. He did not waiver. He was a load barring wall of support. He brought fact and process to my fears and anger. He took my heart in his hands and kept it safe. I felt so broken and defeated, but he gave me faith and trust in our future.
Finally, call some siblings. These aren’t like regular siblings. These are power, strength, love, and support rolled up into 3 older siblings ready to stand along side me. Each of them offering their perspective, their hope, their unwavering commitment to support me in this journey.
I had learned during another life crisis, that not all people can support or help you the same. You can’t have a bunch of people making meals, but no one to walk with. Or everyone ready for comic relief and ice cream, but no one there to lose your mind to on your darkest days. Your support system must be dynamic and full of variety. Whether siblings, friends, or roommates. Your goal should be to curate your support system with as much variety as a Walmart Super Center.
Jillian [LOU]: Sister. My reality check. My lose your mind, scream it out, but clean yourself up after, Lou. She gave me permission to feel, but a push to get prepared to move forward. Her love is special. It isn’t fake or surface level. It is so rich and full that it’s scary. A “Lou” lets you call her at 6am crying and screaming because Kelly Clarkson’s song “Stronger”, pushed you over the edge, and she says, “It’s okay, SCREAM LOUDER char char.” And only reminds you to move forward when you’re ready or when she knows it’s time.
Adam: Oldest Brother. “The Peace Keeper.” Something about this man calms the space he walks into. He has passion and drive and depth, yet his spirit brings balance and calm to the crisis. He doesn’t have to though. He chooses his love carefully, and offers his gift to a select few. His support was a centered, sweeping wave of peace. A calm before, during, after a storm. Like the eye of a storm. My storm. Me.
Jordan: Older Brother. Our family comedian, turned warrior dad, incredible husband, amazing brother, loving son…. ready to cut the tension with a one-liner only professional comedians would think to insert at a time like this. And what a relief he is in those moments. A quick “throw some dirt on it” or classic “welp, mother-fucker”… will bring the laughter to accompany the tears. Every crisis and support team needs a “Jordan”. A booming laugh with a smile and love so big it could crush a bear.
Your support team deserves updates, share your news and let the love in. You owe it to everyone to offer them peace in the battle / journey. If you’re not on the battle field alone, shouldn’t you at least share the strategic updates and next steps with your army?
Once my immediately necessary calls and updates done, I was emotionally on “Empty”. I drafted a blanket text to the rest of my support squad, and asked those informed to inform the others on my behalf. I’d follow up with everyone in the days / weeks to come.
Upon returning home that afternoon, I had attempted to do an obsessive amount of research to create the illusion of control and get a grasp on treatment options….. But as God would have it, ALL internet was down in the area, and I was out of cell phone data. So, sleep and Google-Free peace was all I had left to do.
And so, Official Day 1 of my battle against Relapsing Remitting Multiple Sclerosis [RR-MS], was DONE.
Charlotte Raejole