A Familiar Tale

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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,

Laura

 

 

 

 

 

Experience Shapes What we See

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We have an assortment of wildlife living in our suburban neighborhood, much beyond the normal squirrels, chipmunks and song birds.  We have birds of prey – the red shoulder hawk in particular – that keep watch from above.  Another fox family has been born in the thick trees of our neighbor’s backyard and they wander around day and night.  In case you still wonder what does the fox say, it is an other worldly squawking and calling sound, especially in the middle of the night when we are trying to sleep.

 

Most recently we have an adult doe who has been making the rounds of our back yard- she wanders through, nibbling on the weeds of which there are plenty, and she doesn’t seem particularly bothered by my stepping out on the deck to watch her and snap a photo or two.   I posted this picture on my Facebook page and immediately was given a lesson in how we apply our own experiences and perceptions to a particular situation.

 

What do you think of when you see my pictures?

deer

I am always in awe of these creatures even though I know they are not necessarily benign.   Many people responded to the beauty of this deer peacefully lounging in my backyard.  Who could argue with that view?

 

 

 

 

A friend immediately chimed in that she wished she could see the beauty but all she could picture was ticks.  You see, she had been ill for several years from Lyme Disease, a serious infection caused by the bite of the tick carried by deer and other wildlife.  From her experience, there was nothing beautiful in my photo.

 

My sister had the  flashback of having extensive damage done to her car when one of these beautiful creatures bounded onto the highway in front of her one autumn evening.  Our daughter had that same misfortune and totaled her car with a deer strike, but she saw this backyard deer and was still mesmerized by its presence.

 

Then there are my hunter friends  – they spend hours and more hours in fields and woods waiting to cross paths with a deer this size.  They are also the same people who process the meat and eat off their kill for many months.  Their pulse quickened a bit when they saw the picture of this deer just hanging around in my yard.

 

 

deer 2 What does this have to do with anything other than I have some interesting  photos of wildlife in my otherwise quiet neighborhood?

 

 

I offer this as an example of how people can take the same thing – in this case the deer– and come away with very different interpretations of what they see.  I see this happen quite often when people with MS read the same news or research and come away with different ideas.  Take CCSVI or the latest diets or hyperbaric oxygen treatment or any of the other unproven MS treatments and you’ll see this in full action.  There is such a strong desire, no make that a strong need, to find a cure for MS, that it is easy to interpret  the headlines into something other than what it says based on our own biases and preconceived ideas and needs.

 

Each cure we read about means we also must stop and wonder how are we reading the news – is it because it says what we  want  depending on our perspective and experiences, or is it based in fact?  I am a Pollyanna by nature and want to think one of these ‘cures’ might really work,  but the realist in me recognizes the science doesn’t hold up to the proof process.    That doesn’t mean I can’t still stop and wonder if the next ‘cure’ might hold up, and want to learn more about it  – but have to keep in mind my personal perspective helps to complete the story.

 

I will also look at this deer the next time and not only see beauty, but wonder about the ticks and look closer for any bow and arrow yielding hunters closing in.

be well,

Laura