It was the daily routine: wake, dress, pop a handful of pills, and then slowly make the way out the door. Each morning begins with the same question, what is the day going to hold? Not daring to look back or forward, she focuses to stay in the moment – life at age 55 could be so much better but she realizes it could also be worse. She wanders home after being out for the day, feeling the stress through her legs, torso and up into the brain. Life is sure a challenge living with MS. She eases into the routine of taking more pills, selecting a spot on her weary body for the next injection, and pauses to think how much better life could be if it weren’t for this damn multiple sclerosis. Physically spent, she drops heavily into her favorite chair and the fatigue washes over her. Almost instantly, she falls into a heavy sleep.
When she awakens, it’s with the usual sluggishness that tells her the body is again under the spell of MS and awaiting the next pharmaceutical jolt to get moving for the day. She reaches to the table beside her and is immediately gripped by panic – Where are the pills? Her home has a lineup of bottles and elixirs and syringes, all in order and serving a purpose – although not perfect, these medicines slow the progression of her MS and keep her moving. Where are they now??
She tries to stand but can’t move – looking down, she is gripped with confusion because she is not in her favorite easy chair but seated in a wheelchair. How could this have happened ? She was taking her medicines and although life with MS was a struggle, she was still functioning. Why was she no longer moving on her own? She releases the brake and wheels herself across the room and catches sight of a reflection in the mirror – it is a younger vision of herself, possibly no older than 25. She is confused and spins around to head the other direction and is faced with a calendar hanging on the wall open to 1985. How could that be? Slowly it occurs to her that she’s no longer in the present, but has somehow slipped into an era where there were no treatments for MS and people were left to languish, destined to finish the final years of their lives in wheelchairs or worse.
She closes her eyes and feels the anguish of helplessness well up inside – at least in her present day there were options with disease modifying therapies. Here there is nothing but a feeling of hopelessness. She closes her eyes, and drops her head back, thinking of how someday things will be different. Surely a cure can’t be that far away, can it?
She allows herself to be lured into that almost unthinkable thought – a world without Multiple Sclerosis – and startles to find herself whole, as if stepping out of a cloud onto a movie set. Everything’s perfect, including her body, except for the added years. She may have aged, but she immediately recognizes she hasn’t felt this strong and connected in decades. How could this be? She grabs a nearby computing device and quickly searches and finds that MS has been cured. Ways to remyelinate the body were discovered in labs, a vaccination was developed, the cause of MS was found and the risk eradicated, and no one will contract this disease again. Overjoyed, but also perplexed, she wonders how could this have possibly happened?
Reading beyond the headlines, she finds the answer – Just as brave people with MS had offered themselves for trials to study ways to treat MS, the next generation of forward thinking people gave even more – they gave their history, their samples and their ideas, and together formed the big data that allowed researchers to deconstruct MS once and for all. She’s left smiling with gratitude to the people who made the evolution of MS care possible.
Yes, this is a Dicken’s of a tale, but not so unimaginable. Multiple Sclerosis research of the present, past and future is shaped by people living with MS. When we commit our time and resources to help, we build on what others have contributed to help move closer to a world free of MS. Join me in sharing your MS history and ideas at https://iconquerms.org , the gateway to our future and the time when a cure is found. Don’t wait until tomorrow – do it today!
Wishing you well,