A FUTURE “REIMAGINED”
I imagined that a diagnosis would just be a new starting line on my journey. Maybe I’d have some bumps in the road, but what could it really change about my/our plans? Rather than bumps on a road, it suddenly felt like we took a hard left turn onto an unpaved backroad to nowhere. No signs, no light, no roadmap.
In the days and weeks that followed my diagnosis, I had to make peace with how my/our future would have to change. MS immediately changed so much: if and when we have kids, the safety of a pregnancy, when we get married, financial stability, and more. And those impacts are just the big ones that hurt the most.
The dream with any chronic illness is that you go about your life as planned. You manage your treatments, stress, immediate circumstances, and other than that your life DOES NOT HAVE TO change. That dream can take years to settle into. And there is still a new light being shined on that future no matter how long it takes to make peace with it.
With time, communication, collaboration, compromise, and leveraging resources, you are able to get back onto the path you’d paved so carefully for your future. Still new bumps and pot-holes, but back to the road into your future you’d imagined. Only now, most plans must have an added layer of planning & questions rather than pure, frivolous spontaneity.
Do you need to bring a travel kit for meds? How many days?
When does your next prescription / treatment deliver?
Do you need to be home for the delivery?
Are your shoes and clothes right for the weather? Too Hot? Too Cold?
Have you had any symptoms or flare-ups in the last 24-48 hours?
Do you have the numbers to your MD care-team if you need it?
Do I have enough masks, gloves, and wipes to feel comfortable?
The questions go on…. and on…. and on…. especially for someone like me who deeply values the art of planning and control. How you handle your comfort, security, and safety within given plans is up to you. But when your health and that beautifully imagined future depends on these actions and questions being taken seriously, they can’t be completely over-looked.
Our future changed. I know it did. I accept that it had to. Maybe because we still had so many plans up in the air because we hadn’t felt pressure to nail down the answers and timing, yet. On our first official date, we named our future kids, but we hadn’t decided when we’d have them. We hadn’t considered what if pregnancy doesn’t come easily for us? We’d planned to get married, but we weren’t engaged. We wanted to travel around the world, but didn’t know when we’d take the time off of work.
Being so young when I was diagnosed made adapting more challenging for me. I hadn’t done the THINGS yet. I hadn’t seen THE STUFF. We hadn’t made the promise “in-sickness and in-health” yet.
I have faith that my future will be no more/less beautiful and brutal (bruti-ful) as it would have been with or without MS. I have faith that my future will be full of love, loss, hurt, healing, laughter and memories. I have a hope that my future is full of those memories not tarnished by MS, but rather enhanced by MS. I want to be blessed, and be a blessing BECAUSE of my MS.
My journey will be ever-evolving and reimagined because of MS. It will NOT be ruined. My prayer is for the faith to accept the things I cannot change, and hope to leave behind a lasting impact in the things I do change.
Charlotte Raejole