How to Ride a Wheelchair Like a Rock Star

I believe the first step to riding a wheelchair like a rock star is to grieve and accept where you are. You may need a wheelchair for the rest of your life. You may just need it for a season. Or you may be like I was and have no idea how long you will need it.

No matter how long you rely on the assistance of a wheelchair, confronting the grief you may feel is just part of the process. No one dreams of needing to use a wheelchair. It’s OK if you don’t want to use one. But by confronting the grief, you can learn to embrace it.

I borrowed a few wheelchairs before I reached the point where I had to purchase my own. I used to be an athlete. I had just turned 30 and went from pumping iron to having my greatest athletic feat be washing my hair. I wish I could say the grief flowed through me in a moment of serenity, moving me to accept my circumstances and gladly purchase a wheelchair. But loss hardly ever happens that way for those of us with chronic illness.

More than likely it doesn’t happen that way for those around us either. My husband struggled with me needing a wheelchair more than any other aspect of my Lyme disease. I got pretty good at faking being healthy in short bursts, but for him the wheelchair was a silent but bold announcement of my disability. I could hide my fatigue with a smile and makeup, I could cover up my PICC line with a sweater, but there is no hiding a wheelchair.

Feeling my husband’s resistance made me wonder if he was embarrassed by me. It took time for us to work through it together but an important realization for me was to appreciate that my partner had his own grief process. He wasn’t embarrassed by my illness, he was grieving. It is so easy to be consumed by our own pain that we may forget those around us are hurting too. My husband had dreams of us going skiing, rock-climbing and other grand adventures. But with me in a wheelchair and him pushing, he couldn’t even hold my hand.

As my husband grew to accept my wheelchair, I in turn was able to move towards accepting it. Part of moving through grief is embracing a new reality and making the most of it. Learn to work with the body you have. Being in a seated position when others are standing may feel submissive, and while we can’t help sitting, we can often affect our posture and eye contact.

Amy Cuddy, a social psychologist who is an expert in the field of nonverbal behavior, champions the concept of “fake it until you make it.” She states that by making our bodies big and holding ourselves with confidence we not only influence how others see us, but how we see ourselves. Being deliberate in making eye contact and sitting up as straight as possible can change your hormonal composition. So
claim the space you have been given; look people in the eye. And don’t let people pass over you because you are in a wheelchair. If you are making a purchase have the clerk work directly with you, not the person accompanying you. Don’t allow people’s assumptions to dictate how you conduct yourself. Recognize your eternal worth that transcends illness.

I’ve found ways to travel with the wheelchair. I have been pushed through museums, art galleries, historic homes and Disney World. Prompted by this new reality, we even took a trip to Europe. There we discovered the lines are often significantly shorter if you are in a wheelchair. I rolled through St. Peter’s Basilica twice, just because I could.

While the wheelchair has perks with the lines, it is cumbersome. Thankfully my husband and I had lots of help. I come from a very travel-happy family and my mom, having spent her career around wheelchairs as a physical therapist, didn’t consider my new wheels a limitation that would prevent me from exploring.  Her comfort around my wheelchair helped me de-pathologize my situation. My mom even “pimped-out” my new ride by making custom pillows and embroidered my initials on the bag she made to hang on the handles.

It was then that I began to start to see my wheelchair as my new set of wings that help me go on adventures I would have otherwise missed out on. The dreaded wheelchair went from a sign of limitation to a sign of resilience, because no matter how much I wanted to hide in bed, I was out enjoying the world.

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Photo provided by contributor.