Multiple Sclerosis - A fashionable outfit?

This story was one I submitted to Multiplesclerosis.net (https://multiplesclerosis.net/stories/fashionable-outfit/)


I have read stories of how MS has affected others lives. I find these stories inspiring and encouraging as they are reminders of how each of us have our daily and unique challenges.

I recently was reading a story (I can’t remember where or who wrote it… Cog Fog “Brain Fart”), how we, as those with MS wear masks of ‘Feeling Well’.

The idea that we feel like crap, but, when someone asks how we are doing, we say, ‘OK’.

I was reminded that I do this. I don’t always acknowledge how crappy I sometimes feel.
Sometimes an analogy is helpful, to try and describe or express a feeling in words or ways that the person listening can try to understand.

I have given some thought as to some of the ‘MS costumes’ that I sometime wear to describe how I feel with MS at times.

“The Blown Egg”

This costume looks solid from the outside, but considering the contents have been blown out it is empty inside. It looks like it has all the healthy benefits of an egg, but it is fragile and tender. It doesn’t take much to cause shell to crack and shatter, leaving nothing but mess.

“The Hollow Bunny”

This outfit is your typical Easter Bunny, looks solid, like you have it all together, but, if you get over-heated or too stressed, this costume tends to melt, leaving nothing but a melted mess.

“The Tin Man”

This stiff shows up as a strong, ‘got it all together kinda outfit’. However, with spastic joints leaves the wearer of this outfit tired from trying to bend joints that won’t move and an empty place where a heart should be. The heart is missing, because you are not able to do all the things you would like to do, in the time you wish to do it.

There are various more fashionable outfits and costumes we can wear, these are just a couple that I thought of that describe some of the feelings I struggle with when it comes to moving through this journey of MS.

It's the trip, not the destination

Mountains, Meadows and Valleys

In the journey of life, we are never promised tomorrow.  

We are here today, we have a hope and a plan for the future.   We set a path, we make decisions and choices that meet our plans today and influence our tomorrow.

We have a destination in mind of where we would like to go in the future. Where we see ourselves in a year, five years, as adults, as employees, professionals, parents and far into the future of retirement.  

We have our personal expectations of how we want and what we envision our future to be.

Then, there is reality.   We get a job, we get married, have kids, get divorced, get rich, get poor, get injured or sick, look after family members who get injured or sick,  get stuck with debt and so it goes.

During these life moments, we have to alter or change course in order to continue to stay to the destination that we had in mind for our future.

Learning to make course corrections because of obstacles requires resiliency.   When lost in the valleys we have to use past experience, curiosity, the compass of our personal beliefs, strength and courage.

In the process of moving forward into uncharted territory that does not appear anywhere near to the life map that we had planned, it could be easy to feel sorry for ourselves, angry at the world or even give up and settle. 

Today, in the company of women, I was reminded of  the value of resiliency.

Each woman had Multiple Sclerosis.  Each had symptoms that were unique to themselves.   Each had personal experiences and stories of how the disease had presented in different  physical manifestations.  Yet there was a common thread, resiliency.

Not allowing themselves to be stuck in the valley of despair or pity, but, learning to deal with how the map they were given for their planned future didn't look like the trip they had planned.  

Listening to how each had learned to manage their disease, made course corrections or who's trip had been taken to a different destination was a good reminder...

"Life is series of experiences, of which we can plan to where we want to go, pack what we think we need.  However, we need to be open to the possibility of a change of course, even when presented as mountains to high to climb, or valleys to deep to cross.  We will arrive at a destination we can be proud of because of our resiliency".