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Spinal Cord Injury Paralysis Resource Center

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How Christopher Reeve Helps Me Today

Saralee and Bob

Saralee and Bob

By Saralee Perel

"I truly feel that if you understand yourself and set goals without the regulations and limitations others put on you, then nothing is impossible." - Christopher Reeve

It has taken me seven years to consciously relive the events of January 22nd, 2003. I was fifty-two. It's not that I've developed courage to face what happened. I relive it in my dreams. Many nights my husband, Bob, wakes me because I'm screaming. I should have stopped repressing the memories years ago.

Many concerned readers ask me the specifics of what happened, yet apologize for prying. Nobody's prying. It's my fear of facing as well as telling the truth.

"Living in fear is not living at all." - Christopher Reeve

Cape Cod is a kayaker's dream. For years, Bob and I were four season kayakers. We planned our work schedules around the tides. Two days before my SCI, Bob and I had taken a beautiful winter excursion in Cape Cod Bay, where curious harbor seals escorted our boat.

That night, weird symptoms began. In bed, I couldn't keep my legs still. Until dawn, I sat watching TV while continuously needing to swing my legs back and forth.

The next night it became hellish. I needed to stand up and sit down constantly. Then it felt like electrical impulses gone haywire. My legs, seemingly on their own, were flinging up as far as legs could go. I couldn't stop them.

Bob called our friend, Judy, who's a chief doctor at a Boston hospital. I could tell he was trying to control panic.

"What did she say?"

"It's not good."

"Just tell me!"

"She said, ‘Take Saralee to Brigham and Women's Hospital emergency room right now. I'll meet you there.'"

"What does she think is wrong?"

"She thinks it's your spinal cord."

I was shocked. "I didn't have an accident! And I don't have any pain!"

"I told her that. But she said, ‘Something's happening very fast.'"

When I was wheeled into the hospital, I couldn't walk and had no feeling in my hands. I was petrified.

Three neurologists tested me. I looked away as they touched sharp instruments to my body. I felt nothing. Bob saw the startling abnormalities. For my sake, he never showed his terror.

A CAT scan ruled out a brain tumor. Nearly everything was ruled out: multiple sclerosis, bone disease, rheumatoid arthritis.

I needed an MRI but their machine was down. Now I had no feeling in my legs and arms. Since I was losing precious function so fast, we decided to go to another hospital.

A neurologist rushed to stop us. "If you leave here," he said, "you could become a quadriplegic and permanently on a vent." So of course we stayed.

By the time of my MRI, I had no feeling in my torso.

The chief neurologist of several Boston hospitals had been called in. My medical team observed as we looked at my MRI images.

Two vertebrae in my neck had completely disengaged and were rapidly crossing over each other, choking off my spinal cord. Without immediate surgery, the cord would be severed entirely and I'd be completely paralyzed.

Why did this happen? Nobody knew.

It happened spontaneously.

"Can you fix it?"

"No." He was a straight-shooter. "What's done is done. We can hopefully stop the progression surgically."

"Hopefully?"

"There's no guarantee of improvement. There's a fifty percent chance that even with surgery you will never walk again."

I slung my arms over the ledge of the nurses' station. I was in an advanced state of spasticity. Everything was moving on its own. My arms and legs were uncontrollably swinging widely through the air. "Are you telling me that even if surgery stopped the progression, I could spend the rest of my life like this?"

"Yes."

The surgery did stop the progression.

My neurologist said, "If there's any improvement, 90% will occur in the first three days. The only other variable that could help is time. Whatever state your body is in two years from now, you will always be."

Bob asked if occupational, physical therapy, or medication would help. He shook his head no. My doctor's words felt as authoritative as a message from God.

"There are no absolutes and patients should be encouraged to push as far as they can. I decided some time ago, I won't just listen to the rules." - Christopher Reeve

I'd rather not name my doctors. They did terrific surgery. I'm so disappointed in myself that I took their words as gospel.

"It's pretty irrefutable that you can help yourself. I just don't believe in ultimatums." - Christopher Reeve

I wish I was prepared for the psychological and physiological aftereffects. Bob was angry. "They sent you into a whole new world without telling you one thing to expect."

There was no improvement in those three days.

I kept falling. My brain sent incorrect signals how high to lift my foot, such as over a two inch obstacle. Had I been told two words "look down," so many dangerous falls would never have happened.

"Gratitude, like love, needs to be active." - Christopher Reeve

Hallelujah! I could use my typing fingers, and I started using them with gusto.

"Living a life with meaning means spreading the word. Even if you can't move, you can have a powerful effect with what you say." -  Christopher Reeve

Saralee on Kayak

Saralee getting ready to kayak

I'm privileged to help others by writing for the Christopher & Dana Reeve Foundation, though I'm still surprised every time I see myself described on their website as a "woman living with paralysis." Paralysis is defined by the foundation as a central nervous system disorder resulting in difficulty or inability to move the upper or lower extremities.

"Even if your body doesn't work the way it used to, the heart and the mind and the spirit are not diminished." - Christopher Reeve

In these seven years, I haven't been able to change some malfunctions . . . yet. Walking feels like I'm on a tightrope while moving through molasses. Though I can walk, I can't climb one step. With no balance, I can't stand still. But I've become determined to help myself.

"I gradually stopped wondering, ‘What life do I have?' and began to consider, ‘What life can I build?'" - Christopher Reeve

I learned that there's no greater antidepressant than helping others.

"By reaching out, more comes back than you can possibly imagine." - Christopher Reeve

It is dramatically gratifying to make a difference in others' lives through my writing. The countless readers' responses I receive have without a doubt brought meaning to what happened in 2003. I am eternally grateful for all who have helped me by telling me my words are important to them.

My wish is that those who read this column might re-think the words "try" and "hope."

"You should have a dream and absolutely go for it. Don't let anybody say you can't do it." - Christopher Reeve

Before my SCI, I spent nearly every day kayaking in the magical world of Cape Cod Bay. I assumed those days were gone for good, but now I know they are not. Bob and I have taken five small excursions back to the bay. The curious seals were still there, probably wondering where we've been all these years. I tell them, from my strongest heart and resounding voice, what Christopher Reeve has said:

"I refuse to allow a disability to determine how I live my life. There is only one way to go in life and that is forward."

At that two year marker when my neurologist said that whatever I was, I will always be, I could walk no further than twenty feet.

"We all have powers within us that we don't know exist until we're tested. There are no limitations to what you can do if you have the determination." - Christopher Reeve

This year I made it up to ten miles.

Award-winning columnist, Saralee Perel, welcomes e-mails at sperel@saraleeperel.com. Please visit her website to see her latest project or simply to have fun: www.saraleeperel.com.

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (PDF)

Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.

Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

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The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.