Staying Well In My Disabled Body
Person sitting with legs crossed, stretching arm across body. Sitting on a yoga mat, laptop open. Courtesy: Canva
By Arielle Dance, PhD
“Since my physical body is unpredictable, the only thing that gets in my way from being well is thinking I have to do something to be well or whole.” - Neil Hughes
Maintaining wellness while living with a disability is a top priority for some disabled people working to improve their quality of life. I am one of those people. As a former dancer living with chronic pain, I have always tried to find ways to stay well and in motion. From walking my dog multiple times a day to returning to dance classes, I feel better when I am actively working to strengthen and move my body even though it’s very hard. My goal is to keep my body in motion, hoping that “a body in motion, stays in motion”. I meditate regularly to improve my breathing, welcome calmness, and for pain management. With this wellness journey, I have noticed the impact on my pain— although the hope is to reduce pain by staying in motion, I’ve noticed that pain sometimes increases, my stamina is low, my weight does not decrease, and on rough days, my energy stays low. Nonetheless, I am still invested in caring for my body through movement and meditation.
Other disabled folks in the Diversability Leadership Collective, shared how they also work to stay well. Nicole (Nix) Demos, Neil Hughes, Nico Meyering, and Jay Trivedi are each on personal journeys to wellness that include exercise, mindfulness practices, the arts, and self-care. Physical and mental wellbeing are an instrumental part of their experiences as disabled people since wellness helps to address pain, weight gain, swelling, brain fog, and more. Nico shares that “any movement that helps blood flow and reminds me to breathe deeply, is welcome.” Despite the obstacles and setbacks of staying well with a disability, these folks continue to stay motivated and persistent.
Nix Demos (she/her)
Nix lives with Cerebral Palsy (Spastic Diplegia) which causes leg, nerve, and muscle pain. This pain is exacerbated by sciatica, chronic outlet syndrome, and rheumatoid arthritis. Because of her chronic pain, wellness can be challenging. As a wheelchair user, Nix is committed to embracing mental and physical wellness despite worries of weight gain and frequent swelling of extremities. She adapts her physical workouts to adjust for any pain she is experiencing. Through journaling, medication, the arts, and dog walks, Nix practices wellness at least once a week. Maintaining a calm mind, living a longer life, and persevering despite setbacks are her primary motivations.
Neil Hughes (they/them)
Neil lives with Functional Neurological Disorder and Complex Post Traumatic Stress Disorder. Both of these impact Neil’s autoimmunity. Their functional neurological disorder and spinal cord injuries cause pain, neuropathy, spasms, rigidity, tremors, altered sensations, vasovagal syncope, and balance problems. After the loss of their partner, Neil is recommitted to staying well for their children. Neil aims to address their wellness holistically by prioritizing personal needs through yoga, photobiomodulation, and biofeedback. They also feel comforted when they’re able to handle medical bills and any healthcare business. Neil acknowledges that being disabled has an impact on their wellness which reminds them not to put so much emphasis on seeking wellness nor wholeness. “Wellness is not an activity but a way of being. It is not how I look or feel or how much pain I have or don't have, being well is being human and accepting it all with compassion.”
Nico Meyering (he/him)
Nico has Congenital Central Hypoventilation Syndrome (CCHS) which impacts his breathing and uses a BiPAP machine. Additionally, he has a pacemaker and diaphragm stimulator pacemakers. To stay well, Nico takes his Pitbull for walks several times a day. Living in a walkable neighborhood also allows him to walk daily for regular tasks and errands. During his walks, Nico is able to clear his mind, explore his community, and connect with nature. “Observing changes in the weather or in my surroundings helps keep me grounded when I'm very busy or stressed.” He is grateful that his disability does not impact his mobility which allows him to be immersed in his community. Nico’s goal is to explore some additional heart-healthy activities to improve his blood pressure and circulation. He welcomes any movement that keeps his blood flowing and reminds him to take deep breaths.
Jay Trivedi (he/him)
Jay has Congenital Central Hypoventilation Syndrome (CCHS) which disrupts normal breathing patterns and requires him to use a medical ventilator. CCHS has significant impacts on carbon dioxide and oxygen levels so Jay exercises daily to rid the body of some of that extra carbon dioxide. He believes that daily walks, being an active member of his community, and working full time are great ways for him to maintain wellness. Through these avenues, he’s able to stay involved in advocacy and develop friendships which are his motivation for wellness.
Staying well with a disability is a unique and personal journey. From exercise to meditation, wellness comes in various forms. However you stay well, the goal should always be to feel well in your mind and body.