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Spinal Cord Injury Paralysis Resource Center

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One Precious Step at a Time

Saralee Perel

Saralee Perel

By: Saralee Perel

"If you leave here, you could quickly become a quadriplegic," the neurologist said. I had just spent 14 hours in a Boston hospital's emergency room and felt desperately ready to go home. I had lost my ability to walk just that morning. In a state of denial, I figured it was a pinched nerve or something I thought was common that I could simply deal it with at another time.

"I've been looking at your MRI and CAT scan," the kind doctor said. "We need to admit you." And so began the brand new odyssey of my life as I now know it.

Two vertebrae in my neck had disengaged and within a very brief period, began a direct route on their way to compromising my spinal cord completely. "Even after surgery," the doctor said gently, "there's still a 50% chance you'll never walk again."

Just don't look
Of course there were many moments of terror. Yet oddly, there were funny times as well. I begged for an open MRI because I'm claustrophobic. This procedure was akin to lying perfectly still under a Mac truck that was looming a half an inch from my face – a Mac without a muffler. "Don't open your eyes," I was told. "That will help."

"Well that's a peachy idea," I thought. "If I don't open my eyes, I'll be able to pretend I'm luxuriating on a quiet beach, slowly sipping a Margarita. Oh - - sure. Hellooo? We all know where we are. It's sort of impossible to ignore a screeching machine the size of a jumbo jet hovering above my nose!"

I hear that open MRI's have come a long way now, and aren't like the one that I had.

And you are...?
I really didn't have much choice but to have surgery. I asked for a lot of extra sedation. "It's not enough," I told a man standing near me. "And, by the way, what is your name, you handsome fella?"

"It's Bob," my husband said.

The surgeon removed a disc from my neck and put in a titanium plate to hold my vertebrae together. A donor bone was grafted as well. Boy – talk about the good deeds of strangers.

After surgery, I was wheeled to my room where Bob was anxiously waiting. Believe it or not, I stood up and walked to his arms. I don't know who was crying more.

How could I ever be so lucky to not just walk again but also to have Bob? I wore a rock-hard neck brace that prohibited sleep. Throughout the nights, Bob heard me crying. How could he take all this? He even helped me steady myself so I could floss my teeth.

People power
Not too long after, Bob took me to a brace specialist to find a more comfortable neck brace. As I hobbled along, wearing my Darth Vader torture chamber and holding onto his arm, a woman, who was obviously in so much more pain than I was, walked by me and whispered, "I hope you feel better." That touched me so.

In the waiting room at the medical supplies place, seats were filled with people all wearing miserable-looking appliances. Everyone kept to themselves until I turned to the group and said, "Aren't we a bunch?"

That started laughter and story-telling about what had happened to whom to make us wind up here together. We needed that. I needed that.

The precious present
And now, I try to live in the present. I prioritize my worries. How wonderful for my biggest dilemma of my morning to be - should we put mayo or horseradish on our sandwiches? It's such a beautiful problem – a much better problem than - can I make it to the bathroom in time? I am now in ecstasy hearing my cat purr on my shoulder when the sun comes up and she's hungry.

I have to think of my blessings. My home, my wobbly legs, my partner who adores me.

We don't know why this occurred or if I'll even get better. But I believe I will. It won't all happen at once, but it will happen. I know that it will.

Someday . . . one precious step at a time.

Award-winning columnist, Saralee Perel, welcomes e-mails as sperel@saraleeperel.com or via her website: www.saraleeperel.com.

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A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

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

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

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

Caregiver.comOffers a directory of support groups for caregivers.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

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

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

Red Cross Family Caregiving ResourcesInformation for caregivers.

Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

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.