Step Into My Shoes (Multiple Sclerosis life)


my_lonely_island_shoes_by_raemackattack-d3e6be5Step into my shoes.  Walk my walk.  Tell me where you are going during the course of a day?  Has it been interesting?

Have you interacted with people?  Have you smiled and spoken to others?  Have you learned something?  Have people evoked responses from you?  Have you been out in the sun?  Have you had a change of scenery?  Have you laughed out loud?

Did you see something beautiful?  Did you see something new?  Have you felt compelled to help someone or have you been compelled to avoid someone?  Has someone made you feel good?  Has someone acknowledged your work?  Have you felt like you have accomplished something?  Do you know your place in this world?  Do you know who you are and how you fit in?

Has someone credited you with a job well done or not done?  Have you seen children playing?  Have you gone out for lunch? Have you been invited to do something?  Have you hugged someone?  Have you met someone new?  The list goes on and on.

Step into my shoes again.  You are in constant pain.  You are drugged up.  You are incontinent all day.  You go to the bathroom more times than you can count during the day, trying not to leak before you get there.  You are fatigued to an extraordinary level.

Fatigue doesn’t mean sleepy.  It means that your head is too heavy to hold up.  Your legs feel like you’re walking in the deep sea against the tide.  Your hands can’t hold onto anything for very long before it drops to the floor.  You feel motivated to do something and in the next second, it feels like an incomprehensible mountain to climb.  You start something and then you feel too brain weary to continue it.  You leave it for later, but later doesn’t appear.  At the end of the day, you collect all the things you set out to do and tell yourself you will do it tomorrow, but oftentimes tomorrow is weeks later.

Walk my walk.  You have to lean on things or else you wobble or you may fall.  You are leery of walking because you may fall or bump into something painful.  Your feet drag on the floor particularly while wearing shoes.  This has caused falls because you catch your feet on the edge of the carpet or just because.  You lean over and down to the right even while sitting.  You are embarrassingly aware of how you look to others, that is; if you go out anywhere.  You are oftentimes not wanting anyone to assist you while walking because you don’t want to appear feeble.  Then there are times when you know you need the help and gratefully accept the help regardless of how you appear.

Feel my pain.  Feel the pounding in my head.  Feel the rigid neck and shoulders.  Feel the spasms in my back and in my legs.  Feel the pain of sitting due to the pain in my legs and buttocks.  Feel the pain in my fingers.  This does not allow me to work with my hands for hours at a time like I once did not so long ago.

Feel the pain in your stomach.  Feel the sudden pain of someone smothering you around your waist and chest so that you can barely breathe (MS hug).  Feel your fingers locking and your toes locking.  Feel the pain of stepping on something that hurts the bottom of your feet. Why is this?  It’s because in order to partially solve the feet dragging with shoes on, you go barefoot all day.  Feel the pain of having to go up or down steps.  Feel the humiliation of having to crawl up the steps.  Feel the strange twitches in your face.  Feel the icy burning in patches in unexpected places on your body.  Feel the pain of having double vision.

Feel the pain of knowing you have lost hours of time because you probably fell asleep or because you just don’t recall that time.  Feel the pain of being burned every day because you cook at the stove and your hands don’t realize how hot something is.

Feel the pain of confusion, of trying to think logically all day long.  Logic is elusive, there one minute gone the next.  Feel the pain of loss of words.  Even as I write, I have to stop numerous times to find the words that I know are there but are playing hide and seek with me.

I write to you because it is expressive.  The words write what I can’t say because at the time of discussion, the conversation moves too quickly for me to accurately speak my mind.  Instead I jump around and even I know that I’m not making much sense but I can’t do anything about it.  It’s only when the conversation replays in my head, that I find the words I really wanted to say.

Writing has become my refuge.  It is my way of having a conversation.  After all, there is no one to communicate with during the day.

Step into my shoes.  I am alone.  I no longer know how I fit into the world.  I know that I am worthy of acknowledgement but there is no one but you in my life.  I’m sorry but you are not enough for me.  However, you are all I have and if you walk out the door angry, you isolate me even further.

I am in such pain as I sit here and write.  My leg hurts and so does my heart.  I can fix my leg with a pill, but there is no pill to ease the pain in my heart.  The pain in my heart is not because of you, it’s because of a lack of people’s inability to understand the life of a shut-in person.

Of course, if we explained ourselves better, then perhaps they would understand.  However, for most of us, we see the distancing stare when one tries to explain the life of a person with Multiple Sclerosis or the life of any person who is chronically ill.

I’m tired now. shoe1



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