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Spinal Cord Injury Paralysis Resource Center

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The First Step is Not About Walking

Saralee on her trike bike.

Saralee on her three-wheeler bike.


By Saralee Perel

"Where have you been?" a neighbor named Stacy said.

"Where have you been?" my neighbor, Robert, asked.

I was riding my three-wheeler bike down our road. The bike is made specifically for people like me with an SCI. "Well," I said to the dozen or so neighborhood folks who asked me the same question. "I took time off to be depressed."

I was on my trike that day because of a breakthrough. I can still visualize myself on a recent afternoon when I debated about opening our front door and re-entering the outside world. The breakthrough occurred because of this thought: "If I keep waiting until I want to do something, I'll be waiting forever."

The effect "City Slicker" had on me
Oddly, this new way of thinking began because of a 21-year-old movie I watched called, "City Slickers." Mitch, played by Billy Crystal, is dreadfully depressed as he takes us through his comical mid-life funk.

During his journey of recovery, he was taught "the secret of life." But here's the thing: Finding that secret could never have happened until Mitch stopped waiting for happiness to come to him and instead took the first step himself.

First steps, I have learned, are nowhere near as huge as they sound. They're actually quite simple. They have to be.

My husband, Bob, heard me crying when the movie ended. "I thought it was a comedy," he said.

"It was hysterical."

"Then why are you crying?"

No more waiting
"Because it made me realize I've wasted six months of my life by settling into depression and waiting, waiting, waiting to come out of it."

That was the instant I took that first step. I grabbed my cane and said, "I'm going to ride my trike."

He tried to stop me. "You can hardly move today. And you haven't been on your trike for ages!"

"Bob, if I don't do this now, I am never going to do it." I knew that. I knew that from the depths of me. I had to do something to help myself.

And it had to be now.

Now, I'd have never done this had I thought, "I'm going to grab my cane, put a change of clothes in my backpack, find the bike lock, check the weather," and on and on, ending with something overwhelmingly sabotaging like, "and ride every day for the rest of my entire life."

To new beginnings
I biked down our road, loving every minute. It's a new year, a new me, a new life and all because of one simple decision.

And so, the secret of life that Mitch learned?

To paraphrase from the movie: "Just one thing," Curly, the wise cowboy said. "You stick to that and the rest is foolish detail."

"What is that one thing?"

"That's what you have to find out for yourself."

For Mitch, it was not about taking an adventurous trip out West; it was merely agreeing to read the brochure.

For Mitch's wife, it was just saying these words to him: "I want you to have that adventure and find … your smile."

It was when Mitch realized by simply giving his wife one single kiss: "Today is my very best day!"

And for me, it was grabbing my old wooden walking stick.

American Horticultural Therapy AssociationHorticultural therapy (HT) is not only an emerging profession, it is a time-proven practice. The therapeutic benefits of peaceful garden environments have been understood since ancient times. In the 19th century, Dr. Benjamin Rush, a signer of the Declaration of Independence and considered to be the "Father of American Psychiatry," reported that garden settings held curative effects for people with mental illness.

Dowling Community Garden: Building Accessible Raised-Bed GardensFunding for the wheelchair accessible beds was provided by the Longfellow Community Council Neighborhood Revitalization Program (NRP). NRP funds paid for the materials and all labor was provided by Dowling gardeners. If you are a wheelchair gardener or know a wheelchair gardener who would be interested in gardening at Dowling, please call the Dowling Community Garden voice mail at (651) 255-6607.

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Gardening for People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Hunting for People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

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

Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.

Challenged AmericaThe Challenged America program is dedicated to introduce sailing as a therapeutic and rehabilitative enhancing activity to individuals with disabilities, their loved ones, and professionals in healthcare and rehabilitation.

CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.

Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.

Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.

Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.

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

Determined 2 HealProvides helpful information for the newly spinal cord injured.

eHow: How to Make a Wheelchair/Scooter Accessible Raised Garden BedHow to build an accessible raised bed garden from inexpensive, easily obtained materials. This is a thoughtful, enriching and enabling gift for the elderly, disabled and arthritic individuals.

E Nasco: CelluGro™ Wheelchair Accessible Green Thumb Therapy GardenDesigned by a horticultural therapist, this makes it possible for anyone who may not be able to do traditional gardening to be active gardeners.

Flaghouse: Gardening ProductsTo enhance the quality of life for all people, with resources for physical activity, recreation, therapy, and the development and support of life skills.

Friends Hospital: Adaptive Gardening to Meet Your Changing NeedsGardening is one of our most popular national pastimes. Horticulture can be enjoyed by almost everyone, whether young or old, weak or strong, able-bodied or handicapped. Gardening can be a vigorous activity or a sedentary one. As you grow older or your physical abilities change, there is no need for you to stop gardening. Gardens and tools may be modified to help ease stress and strain and allow you to continue to participate in one of the best leisure activities.

Gardener's Supply Co.Disability Opens New Doors for a Lifelong Gardener .

Infinitec: Enabling Gardens This section demonstrates accessible ways to garden, but please consult general gardening resources for help with soil preparation, planting, fertilizing, mulching, pruning, etc.

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.

Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.

The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.

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

The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.

National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.

New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.

Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.

Paralyzed Veterans of America (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.

SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.

Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.

United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.

U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).

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.