Monthly Archives: November 2013

I Choose To Laugh

Cathy ChesterCathy Chester has written a guest post on behalf of Healthline.  She’s a writer and health advocate, and writes about living with a disability during midlife at An Empowered Spirit.

The first time “it” happened I was walking as fast as I could through the Port Authority Bus Terminal in New York City.  Everyone walks very fast in Manhattan, and when you’re trying to catch a bus, they walk even faster.

They do this without looking anyone squarely in the eye. There must be an unwritten law that you aren’t allowed to look anyone in the eye if you live in the Northeastern United States.

Trying to catch my bus, I noticed my body felt very “uneven.” I would take one step and my foot would touch the ground; the next step it would not.

What was up with that?

I looked down to see I had one shoe on.  What?  Yes, one shoe off, one shoe on…(I won’t continue with that.)

I looked in back of me, and the fast walkers of Manhattan were kicking my shoe out of their way to catch their bus.

My foot was so numb I never noticed my shoe had come off.

The second time “it” happened was the following year.  I was going out to dinner with some friends to a bar/restaurant.  After waiting for our table at the bar (and one glass of wine later) we were called to our table.  Following the waiter up two short steps, I fell down. Plop.  My legs had given out.

“How many drinks did you have?” the waiter asked, smiling like I was a cheap drunk.

I could have said a lot of things, but I blurted out, “Only one.”

Not exactly clever.

The “it” I am talking about are those things that happen to us while living with Multiple Sclerosis.  Those humiliating and embarrassing day-to-day activities that happen if we fall, trip or collapse during the treadmill of our lives.  They can happen in an instant or over time, but when they happen, how will we handle it?

After 26 years of living with MS, my response to that question is to handle it with grace and humor.  After all, what are our choices?  We can either cry or laugh.

I choose to laugh.

Those of us diagnosed with an autoimmune disease end up listening to family, friends, doctors, therapists, social media and countless other well-meaning people trying to help us manage our disease.  People, in general, are more educated about MS today than they were 26 years ago.

But we still have a long way to go.

I hope we handle their education with grace and humor, while letting them know that MS is not something to laugh at, but we can still laugh at ourselves.

Today I would have told those people kicking my shoe around Port Authority that I have MS, so if it happens again they will think twice and be kind enough to tell someone they lost their shoe.

Today I would have told the waiter at the restaurant about MS, so if it happens again he would use more tact, and show more compassion.

And both times, I will continue to laugh inwardly and, outwardly, helping to spread MS awareness.

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Proud? Oh, Yes.

The Teenager was on his way back from London in the aftermath of the storm on Monday.

It was touch and go whether he would get back on time and during the journey he sent me a long string of texts, keeping me updated minute by minute. Bless him;

Train not moving. Train moved for a minute. Train stopped. No idea where I am. Got off train. Got on another. What’s for tea?

His last text was more enigmatic – Brilliant news!!! Something amazing just happened!!

He refused to elaborate until he was safely back home, an hour late, but beaming from ear to ear. Finally, he said, ‘It was great, I was speaking to a medical student on the train and I was telling him all about MS and all about that funny treatment you had and how much better it had made you, and we had such a great conversation and I actually know an awful lot about MS, don’t I?’

Just like me, The Teenager has had a long way to go from shock to acceptance throughout the whole MS drama. He was 11 when it all started and I worried about the long-lasting impact witnessing a parent in rapidly declining health would have on him. I stood by helplessly as he cried in the bathroom or slammed his bedroom door in anger. He did not want to be consoled, he just wanted it all to stop.

At the recent MS Society awards ceremony in The Dorchester, he moved with ease through the crowd, chatting to anyone and everyone. He experienced a positive side to MS and realised that he was not alone in his new environment.

Thanks largely to Alemtuzumab treatment and a great support network, MS has not been as devastating for us as it could have been. If anything, having MS enter his life at a relatively young age has made The Teenager far more compassionate and acutely aware of the multifaceted issues surrounding disability.

However, he is still a teenager. I don’t confide my fears in him (why would I?), his life continues as normal as possible and although MS may have weakened me, I still retain my strength as a parent. And I am still more than able to nag him about the state of his bedroom, not doing his homework on time and not closing the fridge properly. Some things will never change…

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