Will people stare? Will my wheelchair be in the way? Will I drop something? What about steps? Will the entrance be wide enough?
There may be a million questions that run through your mind the first time you take an outing as a quadriplegic. I know because I’ve been there.
It all started for me 36 years ago. To best understand my fears, during my first outing, we have to start at the beginning. My rehabilitation was much different than most rehab experiences. I was only four when I sustained my C7 incomplete injury in 1979. There were very little resources and knowledge in long-term care for spinal cord injuries and my hospital stay was deficient. There was absolutely no consideration for my independence. The constant reminders that my life would never be the same sounded like, “She will never walk again. Go home and just do your best.” I was discharged from the hospital with no “formal” rehab and left to the care of my parents.
I don’t recall much about the very first outing I had after paralysis (probably because of my age) but I do remember vividly my father picking me up out of my wheelchair to place me on a park bench. I was terrified by the lack of sensation. I was overwhelmed with fear that he would drop me. This was a moment when I clearly identified that living with paralysis would require an enormous amount of trust.
Fast forward to my High School years. My parents had done a wonderful job of providing me with care. All my daily needs were meet by either my mom or dad. Whomever I was with at the time. My parents divorced after the accident and I spent time with them equally.
When I became a freshman in high school the yearning to be completely independent consumed every area of my life. I appreciated all the assistance I received from my parents but I despised that I depended on them. My “fight” for independence began. I call it my “fight” because it wasn’t easy for my parents to let go after all those years of caring for me. I had to plead my case, over and over, why it was important for ME. I developed a grit and determination that I would find a way to be comprehensively independent, no matter what the cost! I became my own advocate.
I worked closely with my insurance for months. My perseverance paid off. After months of phone calls, letters, and documentation I received notification that I could get “proper” rehabilitation and independent living skills at a Rehabilitation Center in Atlanta, GA. I was beyond thrilled and welcomed this journey.
The 3rd floor at the rehab center became my second home. My nurses and therapists became my new family members. I found comfort in being around others who understood what I was going through.
While I was relearning basic skills through physical and occupational therapy, it was in recreational therapy, that I uncovered an entirely new talent: painting. Because my injury left me with limited use of my hands, painting in therapy was recommended as a way to work on my grasp and fine motor skills. I discovered art therapy to be a relaxing way to practice my new skills in a quiet environment.
I found myself spending every free moment I had in the art room. Quiet with my paint brush and my thoughts. Until the day came and my therapist said, “It’s now time for you to graduate and go home to live independently.” My thoughts no longer silenced by the stroke of my paint brush. The flood gate of fear was opened once again. I would no longer be surrounded by people that understood my circumstance. What would living independent feel like? What about outings? Where will I go? I won’t fit in? There will be no one to help me? What if I fail?
By this point in my journey, I had learned that negative self-talk did nothing to improve my independence. In fact, it was the fears that overshadowed any progression I was expecting to make.
I made plans for my discharge and a whole new world awaited me when I left the spinal cord rehab unit. And then the day came when I left home on my first independent outing.
It required planning. I packed a small backpack, placed it on my wheelchair, and it contained things which I might require when I was away from the house; money, cathing supplies, hand sanitizer, (and of course, my lip gloss).
Most public facilities, restaurants, and other business establishments are wheelchair-accessible. And there are always plenty of people ready to help. I just had to develop the courage to ask for assistance when needed. Like opening the door, reach stuff on a shelf, or assist if I drop an item.
My first outing was a visit to an art museum. I discovered that the art gallery was one of the most equal-opportunity excursions I had ever been on. Being surrounded by creativity encouraged me to develop my art skills even more and my outing to the museum ended with a trip to the art supply store.
Looking back over my first outing, I can offer a few tips:
- Plan in advance.
- Pack needed items while away from home.
- Silence any fears that may keep you from enjoying yourself.
- Find something you are already interested in and then expand your dreams.
- Don’t be afraid to ask for assistance. In fact, people want to help and appreciate it when a wheelchair user speaks up to give clear directions.
- Start with one outing a week after Rehabilitation. As your strength and endurance increase aim for two outings (or more).
- Getting out of your comfort zone can be difficult but the reward outweighs the challenge.
It is on my excursions that I truly discover the essence of who I am. It took a mixture of determination, grit, and hard work for me to realize that life did not have to slip away from me even though it slipped away from legs. To the contrary, life and my greatest adventures had only just began!
The opinions and experiences presented herein are for informational use only. Individual results may vary depending on your condition. Always consult with your health care professional. This individual has been compensated by Bard Medical for the time and effort in preparing this article for BARD’s further use and distribution. 1410-54