Ellie's Blog on MS and Disability in general

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There has been so much talk about hope lately.  The state of our country is so deeply worrying to all of us.  We desperately need President Barack O'bama and Congress to work together to come up with solutions to get us out of the mess we are in.  

The dictionary's definition of hope is: a desire for something , usually with confidence in the possibility of its fulfillment: (for example he was greeted by some as hope for further interest rate cuts.)

However, the hope that most of us feel today is much deeper and filled with much greater anxiety than the dictionary's definition of Hope. Many people are scared that they will lose their jobs, their homes and that they may never recover economically.  And the situation that they are in is not totally under their control.

The poem "Hope" by Emily Dickenson, which is also one of my favorite poems describes more closely the Hope that many of us have.

HOPE IS THE THING WITH FEATHERS

by Emily Dickinson

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm

That could abash the little bird

That kept so many warm.

I've heard it in the chillest land,

And on the strangest sea;

Yet, never, in extremity,

It asked a crumb of me.

Many of us also have had or have the experience of having a problem in our own personal lives. A problem that we also do not have much control over. A problem like our nations problem which is or potentially could be limiting to our lives.  But here again there is always that little kernel of Hope that somehow,some way ,somebody or something will happen to make it better.

In my own personal life MS is my personal problem. I have been going downhill for years. I still get a little better periodically in remissions from my many relapses but it's still downhill, especially for the last four years.  I like to think of myself as a realist who accepts what I cannot change and deal with it. To do this in my current situation has meant that I have stressed modifications to my home and car etc.  I have looked at every difficult functional situation with the philosophy of how can I modify, what can I have built or purchase to make myself more functional. And it has helped me to be as functional as I can be.  And I am very proud of how I have been handling this. 

But deep down in the recesses of my very being is the Hope that I would have a terrific remission and I would gain back function in my daily life that I hadn't had for years.  And I would keep it, never to go badly downhill again on my next relapse.  Or even better, no relapses ever again!  Everything physically back that I would have had as the physically active women I should have been all this time.

Sometimes I dream of headlines like- "SCIENCE TRIUMPHS: New Drugs for MS to Remyelinate Nerves and Develop New Axons !!"   "A Vaccination Developed to Prevent MS."  And of course the best headline of all " A TOTAL CURE FOR MS! !"   I do believe that this will happen but not anytime soon.  And at 73 I need soon.

But I have had a little miracle of my own.  I am now in the middle of wonderful remission. It's three weeks old. I was not be able to walk at all and needed an assistive aid to help me stand up and get out of bed independently.  Now I am standing up and getting out of bed with out aids and wall walking independently 10- 30- 50 -100 feet.   My legs, my trunk, my arm strength and hand coordination are all coming back.

And I am in a state of grateful,grateful thank you, thank you God amazement!!!  I'm taking my wheeled walker with a seat out of cold storage along with my canes.  They need a bit of cleaning up, fixing a wheel and the brakes on my wheeled walker and I think maybe a paint job.  I'm celebrating my miracle by going off to visit my oldest sister in Boston.  I think I'll paint my old cane that I'll bring with my wheelchair a bright red.

I feel that what has happened to me with my MS is a reminder that you should never give up Hope.  Whether it's for a recovery, a remission of a disease or the economic problems so many of us have today. We must remember to keep our Hopes and Dreams alive.  But  while we're waiting for things to take a change we must remember to adapt and do our best to do well. Be a realist to the current situation but never give up your Hope and your Dreams that things can get better.

  Maybe my husband and I will not be zipping around on a motorcycle. But just a little walk in my home and and the ability to be able to do more is a blessing. I won't be greedy!

So hang in there every one and don't give up hope. Things will get better and you'll adapt better too.

                                       Ellie