What are your worst fears in your disability journey? Several readers told us theirs: For some, fear went beyond their physical limitations and had more to do with fear of not being successful. But whatever the source, all discovered they had to face the fear in order to overcome it.
Fear of Being Useless
My real-life nightmare: I am asleep when my son’s crying wakes me. He is crying as if he is in pain. I can’t move my body and I lie there helpless, unable to get up to see what is wrong with my baby. I scream for my husband. He’s in the other room, but he can’t tell me quick enough what is going on. I’m getting anxious, frantically yelling out questions. Not knowing what is wrong with my baby is unbearable. He has a high fever. I can’t get up to hold him, to comfort him. I suddenly feel the bed shake but realize that it is me — I am shaking. I feel like I’m having a heart attack. I can’t breathe; the blood is draining from me. I feel faint and I shake uncontrollably. I never felt this way before.
I cry out but I can’t ask my husband to help me — he is tending to our son; he must come first. I imagine my husband rushing our son to the hospital but I can’t go because it takes forever for my husband to get me up, dress me, lift me into my chair and get me out the door. I picture an ambulance, my baby lying in the back, crying. But I can’t ride with him, hold him or whisper, “It’s OK, Mommy’s here,” because they can’t get my wheelchair into the ambulance. My heart is breaking and I am no use to my child. I can’t go with him. He’s only 3 years old and it’s not me who comforts him.
I’m in such a state of panic that I’m not sure if I’m even able to comfort him. I’m having a hard time myself believing it will ever be OK again. I feel like I am dying. I am afraid to be left alone in bed. I am now wondering what if my house starts on fire and I am alone? I’m trapped. I can’t help my son and I can’t help myself. I wish the bed would stop shaking. It shakes all night long. Then I finally fall asleep.
This happened to us 18 years ago, and I have long since adjusted to my spinal cord injury. My son turned 21 this year … we survived his childhood.
Fear of Failure
On Dec. 24, 2004, I was running in West Palm Beach, Fla., crossing the drawbridge to Palm Beach. The weather was perfect, sunny, and I was enjoying my run. Halfway across the bridge, a car struck me. Next thing I remember, I was on the pavement, unable to move my lower body. I was rushed to the Trauma Center at St. Mary’s Medical Center — where I worked as the assistant administrator. On Christmas Day, a surgeon confirmed a C6-7 complete SCI.
Fear accompanied me on my journey from intensive care to rehab. My worst fear was not about my injuries, but fear of failure. What if I could not return to work and contribute as an active member of our community? I’d always participated in charity fundraisers and volunteered on boards and committees. The ability to do this again would signify that this part of my life had returned to normal.
My parents raised me to believe if you worked hard, all obstacles could be overcome. The pressure for me to succeed in everyone’s eyes — including my own — was tremendous. Many friends in their cards and messages repeated, “If anyone can do this, you can.” I considered this a challenge.
At 58, I was one of the better tri-athletes in my age group for South Florida. Now I had to learn to function as a quad and rebuild my strength and endurance. I used the same “athletic focus,” single-minded drive to overcome my fear of failure as I had in training and competing. Four to five hours of therapy in the gym was good, but not enough, so I had my therapists write posters with exercises I could do in my room.
In my mind I would keep reciting inspiring quotes. My favorites were: “Quitters never win and winners never quit,” “You can throw in the towel or use it to wipe the sweat off your face,” and “You may not be responsible for being knocked down, but you are responsible for getting back up.” The psychologist in my multidisciplinary team provided an important insight: I was accustomed to winning big victories, but during rehabilitation I needed to focus on small victories.
Throughout my hospitalization, my wife Sally, friends, and business colleagues encouraged me to go back to work. In December 2005, accompanied by my service dog, Pollyanna, I returned to work and to the many friends I had missed so much. Any fear of failure is long gone, and I continue to approach new challenges with that athletic focus and determination. I also mentor those who are newly injured to believe that initial accomplishment of small victories lays the foundation for larger victories to come.
Fear of Being Denied What I Need
I’ve had multiple sclerosis for 20 years. My legs tighten up as soon as I get out of bed. Navigating my apartment with my walker is painful, and after a full day, my neck, shoulders and back are strained. I have a tight band-like feeling around my abdomen and experience constant numbness and tingling all over my body. Waves of fatigue hit me, and sometimes my feet and calves feel a burning cold.
Until four years ago I took over 30 pharmaceuticals for the many symptoms of MS. None of them worked for me and I felt miserable. Prednisone for symptom flare-ups gave me a swollen face and acne; Baclofen for muscle spasticity reduced my heart rate; I became depressed and depleted and suicide crossed my mind. Then, I tried cannabis.
I’d smoked pot in college and was familiar with its calming effects. I’d heard it helped certain ailments, so I tried it for MS. It helped with spasticity and insomnia, but the smoke gave me headaches. I researched ways to ingest cannabis, including baking with it. I tried a recipe, began eating 1-inch-cube-sized brownies three times a day and immediately noticed improvements. Symptoms became tolerable. I eliminated all pharmaceuticals and was no longer depressed or suicidal. But I lived in constant anxiety and fear of being arrested.
I started to speak out about the benefits of cannabis. I became a board member of the Illinois National Organization to Reform Marijuana Laws, and the Illinois Drug Education and Legislative Reform. I testified to pass a medical cannabis bill and began telling my story to local media outlets and groups, but I was discreet and afraid of putting my name or face out there. I thought I could be anonymous. Then I heard about Jonathan Magbie, from Washington, D.C.
Jonathan’s paralysis prevented him from breathing on his own, and he needed private nursing care. He was stopped on suspicion of drug dealing and arrested for marijuana possession. He told the judge he wouldn’t stop using the drug, because it made him feel good. He was jailed for 10 days without needed care. Four days into his 10-day sentence, he died.
This terrified and disgusted me, but made me realize I had to move through my fear and not hide my need. I had to speak the truth for me, Julie Falco, for Jonathan Magbie, and for all the other people out there who use cannabis to manage challenging illnesses.
Fear of Drowning
Water-Skiing was my life growing up — I wasn’t quite 5 years old when I put on skis and took off behind a boat, gliding on water. By 17, I was skiing at speeds of 90 miles per hour. At 18, I began skiing competitively and then moved into the Men’s 18-24 division. In my small town, people knew me as one of very few to be invited to ski for the U.S. team in Australia.
In 1978, racing on Mission Bay in San Diego, I hit a large wake at 90 miles per hour and took a hard spill, hitting the water headfirst. Face down in the water, it felt like I had a straight jacket on and couldn’t move. I struggled to turn over, but there was no way. I was going to drown. I started down a long tunnel towards a very bright light, when I said, “OK Lord, take me, I’m yours.” At that moment, my observer, Ernie Earl, jumped out of the boat and saved my life.
I was 22. I lost my job, my girlfriend of four years dumped me, and most of my friends stopped coming around. Still, the thing I missed the most was water-skiing. Everything inside me longed to water-ski again, but I was scared to death of the water because I’d come so close to drowning.
Before my accident, I never knew the word “fear.” I was 5-foot-7inches, 130 pounds, and wasn’t any good at most sports — except water-skiing. Now I was paralyzed at the C5-7 level, felt helpless and afraid I couldn’t ski again. My ego would have been crushed if I failed to get up, and I was afraid of being face down in the water again. So I practiced. Friends put me in a pool with a ski jacket on and I practiced until I got good at flipping over to breathe.
Five years after my injury I discovered the Kanski adaptive water-ski, gave it a try and there was no backing down. Was I still scared? Hell yes, but paralysis or no, there was nothing that was going to keep me from giving it my best shot. With a ski rope tied to the front of the ski and a friend balancing the back of the ski, our boat took off and I was up again. I skied two miles my first try. It wasn’t the same — it was all work and no fun — but I thought, if I can do this, I can do anything.
In 1985, I went to college, earned a bachelor of arts degree in business administration, got my MBA and started my company and website, Access to Recreation, www.accesstr.com.
Fear of Seeming “Abnormal”
“Don’t be such a cry baby” is something that many of us were told as kids — especially in the 1950s.
I was 6 when I acquired polio and became paralyzed from the waist up. I was taken from my parents in the middle of the night and put in an ambulance. My parents were not allowed to accompany me in the ambulance — in my young mind I thought I was being kidnapped. I went into that ambulance screaming, terrified I’d never see them again. When I didn’t stop screaming, the ambulance attendant slapped me in the face. That stopped my screaming.
While I was quarantined in the hospital, I cried for my parents. The nurses told me if I didn’t stop crying, they wouldn’t let my parents see me; I didn’t see them for three days. That stopped my crying.
Terrified that I’d never see my parents again, I became a star patient while enduring torturous therapy: burning hot packs placed on my chest, electrical shock treatments. I never screamed or complained — I sure as hell didn’t cry — I was the happy, smiling, disabled child.
At 11 my brace was removed, and although I never regained use of my right arm, I made up my mind I was going to be “normal.” Nobody would abuse me again and nobody would see me cry or see my fear. I would compensate for my “shortcomings,” and learn to hide my “flaws.” It’s called denial.
I learned how to do more things with one hand than most people could do with two. I married, had children, worked 12-hour days and didn’t know how to stop. I kept going like a machine. Then came post-polio! At 43, I again had to deal with returning physical limitations — braces, wheelchairs, losing strength in parts of my body that weren’t previously affected. Mostly, I had to deal with a terrified 6-year-old child I’d kept hidden for 37 years. I began to have nightmares about a little girl being kidnapped. I had panic attacks but refused to take care of myself.
Eventually, I sought professional help and learned to trust again. I learned how to cry and to understand that I had a right to be angry at what happened to me. I learned I was angry at myself because I thought if I hadn’t been such a “cry-baby” so long ago, I wouldn’t have allowed abuses in my life. I learned compassion for that frightened child.
It has taken much therapy, but I am facing my fears, and that terrified six-year-old has finally found a safe place: She is fading into the past — where she belongs.