Tag Archives: multiple sclerosis

Who am I?

 woman hat

When I was a child I knew exactly who I was.  Some days I was a damsel in distress waiting for her knight in shining armour.  Some days I was a brave explorer saving endangered animals from extinction.  Some days I was Superwoman and I was going to save the world.  And then I grew up.

 At High School and then University I had responsibilities to attend my classes..  When I got a job I had a responsibility to the workplace and my coworkers.  I had friends that I socialized with.  I had family that I loved.  Later I had an apartment that I had a responsibility for, and then pets.  Superwoman was gone and the brave explorer explored no more.  I had grown up.

 The years progressed and I was diagnosed with a disease that changed my life.  In some ways it allowed me to get back in touch with the child I once was.  My responsibilities changed.  My priorities changed.  And in time my body changed.  Move ahead a few decades.  My biggest responsibility now is to me.  And what does that make me?  It makes me human.

 As our species has evolved over the millennium, so too have individuals, of course over a much shorter period of time.  We have to evolve to fit into society.  Some of the dreams we had as children cannot transition into adulthood.  Some of the dreams we had as children morph into something comparable but not exact.  Adulthood really does take a toll on our childhood dreams!  But still sometimes what we’ve dreamt of as a child does come to fruition.  There are brave explorers out in the wilds of unexplored lands working to save the endangered species of our world.  I’m not one of.  There are Supermen and Superwomen out lobbying for the disenfranchised and the needy.  I’m not one of them.  There are women who play the game of damsel in distress to attract a man they believed to be their knight in shining armour.  I’m not one of them.

What I am is myself.  I have come to terms with my perceived inabilities.  In fact I embrace my disability.  I have multiple sclerosis.  It does not have me.  I have a life and I will continue to live it to the fullest whether it wants me to or not.  Do I make concessions to fatigue and other symptoms of this disease?  Yes.  I am no different than anyone without multiple sclerosis.  When they get tired, they rest.  When I get tired, wait for it, I rest.  We all have issues we need to deal with whether you have a disease or not.  And I have made the choice to live and to have a life of my own.  That’s who I am.

The Battleground

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I do not considered myself to being doing battle with MS anymore than I think of my body as a battleground between healthy and diseased. “In this corner we have ‘Healthy Hannah’ battling the evil ‘Diseased Kid’! Nhat! I am right handed, I am a red-head with highlights of ash blond (gray).  I like popcorn and red wine (not together).  I also have multiple sclerosis. I do not spend my days bemoaning the fact that I have an itty, bitty, incurable disease.  I do not spend my days worrying about the fact that my hair is turning gray (ash blond thank you very much).  The fact that I have a disability is rather hard to hide.  I am in a wheelchair.  But this also does not occupy my thoughts.  Do you spend the entire day worrying about your choice of shoes that morning? I am fully aware of my limitations just as you are aware of yours.  There are certain concessions that have to be made because I am in a wheelchair just as you might make concessions due to an allergy to peanuts.

I try to live each day to the fullest because I am a vibrant, incredibly cute, mildly funny, individual.  Period.  Not because I have a disability or because I have to prove something to the rest of the world.  The rest of the world can do whatever it wants (within reason). I am responsible only for myself.  I wish to live a full life and I am endeavoring to do so.

I am beginning to understand that the way I see the world is perhaps not that common.  I watched a program about someone with MS who is going blind and has difficulty walking.  He spoke about his battles with this ‘debilitating’ disease. He is a successful man with a wonderful wife and several beautiful children.  He does not appear to be in financial difficulties.  To the outside world he looks to be in good shape.  I do not doubt for a second that in his world he is indeed doing ‘battle’ with an evil foe.  I simply see the picture a little differently.  Yes I have missed out a few things I had hoped to have in my life: husband, children, career, but I do have something that is invaluable to me: myself. I am in a good place in my life and I believe I will make a difference to others in my own way, in my own time.  That I think is what I want my legacy to be: ‘she made a difference’.  Not yet of course, I have 50 or so years to go before I want any legacy talk!

 

Magical sorcerer

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A magical sorcerer lives in my head

he swims through my body

and fills me with dread

A message is sent

to my foot from my brain

the sorcerer sends orders

to my bladder to drain

It seems I can’t stand

when I want to get up

the sorcerer has plans

for breaking a cup

This disease that I have

it changes my life

it does not define me

or fill me with strife

I am who I am

no matter the name

the magic I have

is never the same

The magical sorcerer

is close every day

a battle perhaps

it does make me pay

I will not give up

I will not give in

the magical sorcerer

can simply not win

The sun and the rain

the fog and the moon

my life will go forward

it will not end soon

Life with multiple sclerosis/magical sorcerer, it is a challenge.

Today is WORLD MS DAY.

WMSD29May2013_english-e1362406476687       MS is a disease of a thousand faces.  It is a disease of change. It changes with each individual.  It is a disease of tomorrows.  We deal with our difficulties today hoping that our tomorrows will be positive.  I will live in the today but I will strive for tomorrow one step at a time. We are not that different from you.  Please do not dismiss us!  And do not see only the disease.  We live, we love, we feel pain and disappointment.  Accept us for who we are and love us for what we could be.  As we do you.

People are capable of adapting to almost any situation, but it takes time. It also takes effort, a lot of thought and perhaps a change of attitude. MS is not a death sentence, it is a life sentence.  Our lives can be full and valuable not just to us but to others as well.  Individually we are ambassadors.  Together we will cure this disease.

I find joy in my life almost every day. It is the journey that I am taking that is important not the destination. This disease is a part of my life, but it is not my life. And I am not alone. Collectively we are responsible to the world at large to try and live an accountable life but more important is what we contribute to that world.  Today is a good day. If we are optimistic the possibilities are endless and hope is eternal.