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Spinal Cord Injury Paralysis Resource Center

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Was Just Like Any Other Kid

Joe Rhea and Frank White

Joe Rhea and his baseball hero from the Kansas City Royals, Frank White

By Joe Rhea

I was just like any other red-blooded American kid. I loved sports, and I wanted to be a professional baseball player. I was fortunate at the age of 8 to meet my baseball hero, Frank White.

Frank White was the second baseman of the Kansas City Royals, and my grandfather's favorite player. My grandpa and I would sit outside summer evenings on the back porch sipping tea and listening to the Royals on the radio. It was a great time in my life.

Impossible!
During the summer of 1978, Frank broke his wrist playing against the Texas Rangers and was put on the disabled list for the rest of the season. It was during his time off that he just so happened to walk into the car dealership where my mother was the leasing manager. One week later there was a knock on our front door, and as I opened it, there stood a tall, very athletic looking, African-American man in a dark gray, wool suit.

There stood Frank White. AT MY FRONT DOOR!

This was a dream come true for any 8-year-old boy who loves baseball. I was overwhelmed with excitement. I was bursting with joy and just had so many questions that I needed answered. So, over Cokes and pizza, Frank answered all of my questions.

"Do you hate the Yankees, too?" "How did your hands get so big?" "Who is your favorite player?" etc, etc. I was living a dream and never wanted the moment to end. Then much to my chagrin, my mother said that it was time to go to Cub Scouts. Ugh! Drats! Frank could see the disappointment on my face and calmly said, "I'll go with you to your meeting." The Cheshire cat didn't have a bigger smile than me. It just couldn't get much better than that. I was on cloud 9.

It was that night, that moment in time as I watched Frank White sign every autograph, shake every hand, and take pictures with all the other boys and parents, that I knew what I wanted to do. I wanted to be like Frank White. I wanted to have that kind of effect when I walked into a room. I wanted to be a professional baseball player.

I spent the next six years of my life playing every sport that I could play and playing baseball as often as the weather would allow it. Baseball was going to take me places. I was good, damn good, and I knew it. All I had to do was keep playing and stay the course, and I would reach my dream.

Not me
During the fall, where I lived in Kansas, most young boys played football. I loved football as much as baseball. I loved the hitting, the speed and flow of the game. I was smaller than everyone else, yet I was always one of the best. Athletics just came naturally to me, and baseball and football were my two best sports. The problem, though, was my size. In ninth grade I was 5'6" and weighed 115 pounds. During the first week of September, I twisted my knee and went to have an orthopedic doctor look at it. As he was giving his examination, he looked right at me and said, "Joe if you don't get any bigger, you are going to get seriously injured playing football." But I was inflicted with what I call the "Not Me" Syndrome. "Not me," doc. I'll be ok, you watch.

He cleared me to play, and I went back to practice on September 11th, 1984.

The day was September 11th, 1984, and Joe's life would never be the same.

The day was September 11th, 1984, and Joe's life would never be the same.

I remember that it was a hard practice. We were getting ready to play our cross-town rival, Oregon Trail Junior High. It was our biggest game of the season, so practice was very intense and the coaches were demanding perfection. The coach had called for the starting defense to be on the field. I started at defensive cornerback, on the left side of the defense. I was talking to my defensive backfield coach, Jeff Meyers, and I was laughing at something he had said when the ball was snapped. I turned around to see the tight end catch the football and run right towards me. Instinctively I ran at him to make the tackle, a play that I had made 1,000 times before. But I broke the one rule in football you should never break; I lowered my head to make the tackle.

I lowered my head and threw my body at him. His thigh hit the top of my helmet snapping my head down and then back. I hit the ground with all of my weight and lay there stunned. My ears were ringing, I couldn't breathe, and then I realized I couldn't move. It felt like my arms were missing, like they had been ripped out of their sockets. So as loud as I could scream, I yelled, "Where are my arms, I can't feel my arms, where are my arms?" What I didn't know was that my scream was barely as loud as a whisper. All of the breath had been knocked out of me. I was struggling for air, and I was trying to get up. "Why can't I get up?" I thought.

By now my teammates started to hover over me. I started to hear my coach yell at them to, "Get back, give 'im some air!" As he kneeled down over me, I looked at him and said, "I can't feel my arms, I can't move."

The day was September 11th, 1984, and my life would never be the same.

Just get used to it
Every person on the Reeve Foundation website who has shared his or her story knows what comes next. But my injury was before the Reeve Foundation existed, before the Miami Project existed. So when my neurologist told me and my family that I had fractured C4/C5, compressed C5 and herniated C7, sustained a severely bruised and flattened spinal cord, and concluded with "Joe needs to be prepared to use a wheelchair for the rest of his life," they believed it. I did not.

I don't think in the history of the world anyone has ever truly believed it when they were told they would never walk again. You can't believe it, not at first. I simply chose not to listen when anyone mentioned anything like that. I made a promise to myself and to everyone in that room, if I was given an opportunity to recover, that I was going to do it, that I would play baseball again, play football again. Yet, they all looked at me with these sad eyes, as if I was in denial.

Well, seven days later, that opportunity showed itself. When I moved my left leg, it was the opportunity that I needed. I want this to be very clear, if my cord did not give me that window, that chance, I would not have recovered the way I did. No matter how hard I worked or what I did, it was contingent upon the cord. But once it did, I was like Rocky Balboa after Adrian woke up from a coma and looked at him in the eyes and said, "Win." It was on!

Unless you knew Joe when he was injured, you can't tell that he was once paralyzed.

Unless you knew Joe when he was injured, you can't tell that he was once paralyzed.

Battling to get better
I spent two years in physical therapy rebuilding every muscle that could be rebuilt. I could walk before I could move my arms. I am not going to go into the details of physical therapy; we all know what it entails. It's painful, it's grueling, and I wouldn't wish it upon anyone. As the feeling came back to my body, the pain came right along with it. Straining muscles day in and day out causes them to ache and burn so much so that the pain in itself was debilitating at times. This is what they don't tell you if you get a chance to recover. You hurt every single day, every single second of the day.

After two years, I plateaued in my recovery; there were no more gains in the strength of my muscles. My injury is opposite what most spinal cord injuries (SCI) are: my arms are weaker than my legs, and my hands and wrists are even weaker. The average man squeezes 125 pounds of pressure; I squeeze 45 pounds in my left hand and 25 pounds in my right. I can barely open a Coke bottle. Typing causes me tremendous pain.

It's what you can't see
Now here's the rub. Unless you knew me when I was injured, you can't tell that I was once paralyzed from the neck down, and you certainly can't tell that I have deficits as a result. So when I bring it up, it's often looked upon as complaining or even making it up. I don't have the visuals that others see when someone has a SCI. People look at me and say, "You can walk, you must be fine." Yes I can walk, but I have to use the muscles that are most affected every single day for work. There is no way around it, unless I decide to file for disability, and I just can't do that. Yes, I hurt, and it makes me angry and moody and depressed; but I can use my hands, so I will use my hands. I just sometimes wish that people would know just how much I endure every day and how hard it really is for me.

I wrote an essay for the Reeve Foundation a few years ago titled, "The Red Headed Step Child of SCIs." If I am standing next to another individual with an SCI, I may as well be non-existent because I don't use a wheelchair. I have a spinal cord injury, and it wears me down, and I suffer through it day in and day out, and no one knows.

Today Joe can walk, run, snow ski down double black diamond slopes.

Today Joe can walk, run, snow ski down double black diamond slopes.

No matter what I go through or what any other person with a SCI goes through, I don't want another single person to go through it. We need money for research for those of us who have SCI's, but we also need to convince people that most SCI's are preventable. I have spent the last 10 years of my life speaking to students all over the country about making good decisions, decisions that do not lead to catastrophic, life-changing injuries. It has been a passion of mine, and I am proud to say that I have saved lives and prevented injuries as a result, but we all can do more.

Today I can walk, run, snow ski down double black diamond slopes, golf with a handicap as low as 8.5, and do almost anything I want. I do it all with atrophied upper extremities, and with a lot of pain. But I also do it with a smile on my face. I know that even though I hurt and I feel mistreated at times, that it could be so much worse. I know this, and do not want anyone to think I feel otherwise, because I don't.

Sure, it took me a long time to actually figure that out, but when I did, it was like the world was lifted off my shoulders. I would be a liar if I didn't say I still have my dark days, or that I never ever said, "Why me?" But then I think about the other C4/C5 SCI-injured people I have met, and it makes me want to cry. I know how very fortunate I am, and that is why I do what I do today. It's why I endure the pain, because a part of me owes it to all those out there who can't use their hands or their arms. I am humbled and moved and honored to be able to do what I do.

A Reeve Foundation Fact Sheet on Pediatric SCI (PDF)

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 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)

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.

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.

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

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.

Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.

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.

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, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.

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.