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For Barb Barton, hope ‘started as a whisper’

Guest blog by Barb Barton

I wanted it to be the rollercoasters. Rollercoasters and my increasing age. Rollercoasters and the too-tight pressure of the lap bar. Rollercoasters that looped and yanked my body into unnatural positions.

Barb Barton Mary Free Bed Multiple sclerosis rehabilitationMy feet had been numb for 3 days, so I spent the weekend following a trip to Cedar Point amusement park in Ohio with my 28-year-old feet propped and elevated, in between trips to the medicine cabinet for more ibuprofen.

I must have pinched a nerve, I thought. On the third day of stiffly walking, unsure of the wood floors that had turned to sponges overnight, numbness had invaded my knees, then thighs, up my waist on my right side and to the knee on my left side.

Someone else was in my body. My feet landed in nonsensical steps that propelled me unevenly forward. I had lost sensation in my hands that reached as if to grasp something, but pulled nothing but air from another plane in space that was not supposed to be the hand’s arrival place.

My diagnosis: Multiple sclerosis. And, 25 years later, I had a body deformed from extremely high doses of IV steroids to help stem the disease from ravaging my body further. So, in December, I faced two days of surgery to fix my twisted spine and pelvis.

By default, I had to learn how to “hope” – to believe that tomorrow could actually be better than today.

Blind 3 times, a quad 4 times and having learned to walk again 17 times from my MS exacerbations— surely I knew how to “hope.” But I didn’t. I felt only various shades of dread. Of depression. And of futility.

I had two extended hospitalizations at Mary Free Bed: one around 2000 and the other in January for rehabilitation following the surgery. It was there that I got energized. It was there that I silently cheered on my fellow patients in the gym as they struggled to catch a ball. It was there that I learned there are other ways to face injuries and illnesses.

It was there, at Mary Free Bed, I found my own hope.

It didn’t scream at me. It started as a whisper. I was afraid to hope, because I didn’t want to be let down. My therapists and the culture at Mary Free Bed kept the pressure on to hope. They believed in me when I was just going through the motions. But, when you get “Hope-Bombed” at Mary Free Bed from all sides — that’s when YOU start to hope. My hopeless thoughts had no place at Mary Free Bed.

We patients are pretty good at faking hope by hiding behind a smile and just showing up for therapies.  But it gets harder and harder to “fake-it-until-you-make-it” when progress seems incredibly slow.  I know for me, it was hard to sometimes make sense about how catching a ball would help me drive again.

But magic happens at Mary Free Bed. I DID drive again, and I was incredibly happy to be able to walk the length of the mall without falling or becoming overly fatigued. This meant that I had to, though, break that home shopping channel addiction I had developed! It’s always something.

Yes, it is.

It IS always something at Mary Free Bed. It’s a place that can turn dreams into hope and hope into magic.

I know.

Dr. Barbara Barton is an associate professor at Western Michigan University.

2 Comments

Marta Swain

Barbara, is that you?! I was prompted to read this beautiful and compelling story after seeing your name and what I thought I recognized as your picture–looking wonderful and I hope feeling well. Best wishes!

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Patricia L. Crandall

Very compelling life story, Barb. I knew most from conversations. You are a very persistent woman.

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