31 DAYS BEFORE MY 30th…
There are pivotal life moments that we anticipate, experience, and celebrate. All of the monumental birthday’s, the many of life’s firsts. All of these moments are planned & anxiously awaited. We imagine the feelings, we plan the outfits. We construct an image of what these moments will look and feel like. The future that follows depends on the moments that we carefully construct as a roadmap for our lives.
My next “life moment”… My 30th Birthday. In 31 days I turn 30, and let me just say the excitement & anticipation of my 30th feels somewhat uneventful given the circumstances and experiences leading up to it. Not in a “life sucks” or “this isn’t worth it” kind of a way. More in a “wow, my 30th now seems almost trivial in comparison to everything else going on” kinda way.
In the months and days leading up to my 30th, I began to truly connect with this mantra:
“At some point, we must abandon the illusion that our life was supposed to turn out differently.”
Everyone has those life changing moments. The ones that sit us on our rear and open our eyes to the fact that we were never in control to begin with. We were never the one in the drivers seat. Perhaps we can offer directions or suggestions for where life should take us, but for the most part we are just passengers in the autonomous vehicle called life.
I resonate with this quote because most of my life has been about control, planning, and process management. The more, the better. All in a bid to secure a future, it turns out, I had no control over in the first place. I never imagined a life and future with MS, until 1/6/20 when the diagnosis was initially presented. So imagine my surprise, as the control freak that I am, when I realized the future I had carefully road mapped now had to be reworked to include detours for rest stops, rehab, hospitals, and therapy. Cost, appointments, time off, treatments, and recovery, not included.
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I started a new MS protocol treatment in October. In the initial phase, I have to complete 2 rounds of the infusion (chemo) 2 weeks apart, then only once every 6 months after that. All around a far better quality of life than my previous treatment regiment of self-injecting every other day with painful side effects. The medical materials for the infusion that they provide lay out all of the details, processes, expectations, costs, risks, and what’s nexts. Very simple and easy. Read the materials, follow the plan, and the infusion will go smoothly.
However, what I had not prepared myself for was the mental & emotional toll an infusion center would take on me. It wasn’t one of the side effects listed in the pamphlets! It’s a physical space that needs more mental & emotional prep than one might assume.
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Imagine you’re a vibrant, healthy, passionate, driven young adult, you’re rolling through life like a champ…. Then BAMMM!!!! You’re in a faux leather chair, surrounded by doctors & nurses with 20-30 other people receiving life-saving/changing medications in a bid to secure a future that no one can promise. You look and feel strong until you’re suddenly in the most vulnerable, isolating, defeating and HUMBLING chair you’ll ever sit in. This is the chair where you sit for hours as magical mystical poison drips slowly down the tube and into your veins. It’s the part of the Medical drama’s where you see the sadness & weakness in peoples bodies & faces. The strength & power & positivity not quite visible in that chair.
So here I sit, 31 days before my 30th birthday in a space and moment in time I never imagined I’d be experiencing. I am in an infusion center, sitting in sterile semi-comfy recliner, drapes hang on either side to offer what little privacy they can. Patients fill the other chairs in this small room and cycle in and out like laundry. Arrive, sit, receive, leave… repeat. There is a lot of hope in the medications that the nurses are administering. There is a lot of strength and power in this small space. Everyone is alone in these moments due to covid procedures. We are all both weak & sick, yet strong and mighty at the same time. You can see it in the eyes & body language that we each are exhausted and anxious. We each have hope and strength to push forward, yet the moment requires we stay put in the humility filled chair. We all know that the little bags hanging above us are full of hopes and dreams and futures yet to be lived. It takes only 15-30 minutes for most people to go through their treatment cycle. Quick, relatively painless, see you next time experience.
My infusion is a bit more involved. It take 6-8 hours the first 2 times. I am the one watching the cycle of life, and illness, and hope swirl around all day. Since MS is a relatively invisible disease, I look like a thoroughbred stallion in comparison to most. But in that space your mind begins to wonder, if I am here… am I sicker than I look? I don’t belong here… but I am here. I must be sick if I must be here. I am hooked up life saving/changing medications 31 days before my 30th. I would never have imagined that I’d be sitting in the space, with these circumstance, staring up at the bag hanging above me, and patiently passing time by scribbling in a coloring book, as my 30th birthday creeps into view. From my humble chair. The throne of humility & acceptance & appreciation & hope.
So where does that leave me? I am doing well. I feel great. I have some new lesions to be aware of, but I am continuing with my own MS protocol. I find myself, 31 days before my 30th ever more grateful and hopeful and humbled by my life & the experiences it has offered. I continue to learn what acceptance & peace look like. Learning how to balance the emotional tolls of loss & newness & MS.
With all of the unknowns, I find peace that the future I imagined was never mine to begin with. I can plan and create as much as I want but, what will be will be, and any image I construct is an illusion of a life not yet lived. It was never supposed to be different because I was always going to end up in the Humility Chair, 31 days before my 30th birthday
Charlotte Raejole.