New Wheelchair User Embraces Opportunities to Practice Independent Living
By Ken Johnson, LPC
Former Spinal Cord Injury Patient, Shepherd Center
I’ve found when I am out and about in public places, people often ask if I need any help, particularly getting in and out of my car. The sight of me breaking down my wheelchair and putting it into my car must look pretty disabling to them. I usually smile and tell them, “No thanks, I do this all the time,” as I finish pulling my wheelchair into the car.
Often, friends will accompany me to my car just to watch me get in and take my wheelchair apart. My routine never ceases to amaze them. “Wow!” they say, “You do this every day?” Yep, every day. Every new thing I learn to do from my wheelchair allows me greater independence. This freedom of movement is so important to my personal wellbeing. I don’t take anything for granted.
There are times in my wife’s career in public relations when she must be away from home on business trips. These days away from me are particularly difficult for Cathy, but are important for me to practice taking care of myself. Wheelchair or not, I have to live my life. Cathy and I talk about each trip as it comes up, how long she’ll be away and what my plans are while she is gone. Cathy encourages me to be with friends and challenges me to be as independent as possible. Cathy’s business trips are emotionally hard on both of us. We had planned in my walking days to take many of these trips together since the kids are now grown. Unfortunately, my paralysis that began in 2013 changed many things, including short-term travel plans. Hopefully gaining more and greater independence will allow me to occasionally accompany my wife on her trips, but it will be an adjustment.
Everything about being in a wheelchair is an adjustment. No one has it together in the beginning. Everything I learned at Shepherd Center prepared me for returning home – from driving a car, vital for my independence and ability to keep my career, to making the bed and cooking a meal. You’ve got to eat.
But nothing ever really prepares you for that moment when you find yourself sitting in your wheelchair in the middle of the kitchen with no one else home, just you and your thoughts. What if something unforeseen happens? What if I can’t reach something from my wheelchair? What if I fall out of my wheelchair? What if. . . .? My list goes on. The truth is I’m OK when Cathy has to be away. It allows me time to practice my skills, to reaffirm that I can take care of myself in a wheelchair. I haven’t starved yet. Sure, there are things that limit me since being in a wheelchair. I have to remind myself there are things each of us can’t do, even when we’re able-bodied.
Being in a wheelchair has its challenges. I can’t reach items in a store on the upper shelves. I am no longer shy about asking another person to reach for an item I cannot get. Everyone is happy to oblige, if not a little taken aback. “The guy in the wheelchair is talking to me.” I’ve yet to bite anyone. Taking my grocery items out to my car on my lap can be comical, but I’ve learned to tie them down. People with a disability are nothing, if not resourceful.
For me, it’s no longer about being perfect, not making mistakes or worrying about what others may think. It’s about taking care of myself, accomplishing my tasks and accepting who I am in a wheelchair.
Accepting who I am now has been the biggest adjustment. For months after I was first paralyzed, I tried to live in the able-bodied world as if my paralysis had never happened. I tried to ignore my wheelchair, to do my daily routine as though I was not in a wheelchair. Those months were frustrating and exhausting. Ten months out from the day I was paralyzed, Cathy and I are just now beginning to truly embrace what it means to live our lives together with me in a wheelchair.
I now see my wheelchair as an extension of me, not as an intrusion into my world to be ignored and worked around. Accepting that I fit more into the world of people with disabilities has freed me to be more independent and fit more easily within the able-bodied world.
Yes, I drive independently. Yes, I have returned to work full-time as a marriage and family counselor. Fortunately, I’ve had a career where I sit in a chair and listen to people. The only difference now is my chair has wheels and cost a lot more. Yes, I go out to dinner, shopping, and social events with my wife, family and friends. And yes, occasionally I have bowel or bladder accidents and have to go home. Yes, my arms, shoulders and hands ache from pushing my wheelchair. And yes, it’s frustrating to not find an open handicap parking space and have to improvise something far from the entrance to where I am going.
But I am alive. I am content. I find joy even in the most frustrating circumstances. It’s a choice I make every day. It’s a choice we all make. One day soon, I will get on that plane with my wife, and we will fly to her business destination together. But for now, I’m just trying to reach the peanut butter in the pantry. Now where did I put my reaching tool?
To learn more about spinal cord injury rehabilitation at Shepherd Center, click here.
KEN JOHNSON is a licensed professional counselor with 20 years experience in private practice. He is the administrative director and founder of East-West Psychotherapy Associates in Marietta, Ga. Ken has a master’s degree from Southwestern Baptist Theological Seminary. Ken experienced a medical crisis in September 2013 that left him with paraplegia. Subsequently, Ken spent four weeks in rehabilitation at Shepherd Center. The experience at Shepherd Center helped prepare him for life in a wheelchair and set the stage for a shift in his private practice to include counseling individuals and family members facing medical traumas and disability issues. Ken has been married for 31 years to Cathy. They have two grown children and live in Marietta, Ga. Ken can be contacted at 770-419-5657 or at email@example.com.
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 900 inpatients, 575 day program patients and more than 7,100 outpatients each year.