As my disabled body ages: Stories from 6 disabled people
Written by Arielle Dance, PhD - Writer, Diversability
Woman sitting on chair, legs up, ankles crossed. She is looking at her reflection in the mirror.
When I started writing this piece, I imagined writing about disabled people who had been living in their experiences (or bodies) for at least fifty years; who could testify about overcoming self-doubt and embracing self-acceptance. But when I put the call out for stories about aging with a disability, I understood that time in a disabled body has nothing to do with age but all about the changes we notice over time.
I was diagnosed with my first chronic illness as a teenager. Since that diagnosis of endometriosis, I have had five surgeries, two life-threatening diagnosis of pulmonary embolisms that resulted in hospitalizations, and continue to live in chronic pain from a connective tissue disorder. I’ve also graduated with three degrees, experienced grief and heartache, married the love of my life, published a book, and lived in three states. The body (and spirit) I have in my mid-thirties is far from the body I had as an adolescent. This is aging with a disability — the ability to look back at how I have changed physically, mentally, and spiritually due to my disability.
I know that despite the pain I feel daily, I am more appreciative of life now– I dance with greater meaning, love people more intentionally, and exercise more gratitude than I did before. So, although my gray hairs are just coming, this is my story of aging with a disability. I am achy everyday– I take walks three times a day to keep my muscles moving and blood flowing. As a former dancer, flexibility used to be mindless and now it’s painful to even climb stairs. That’s okay with me. I am grateful to still have mobility. Within the gratitude, there is some fear. To be in my mid-thirties with this degree of pain, I fear for the version of Arielle in 20 years. Will I even be here in 20 years?
This is aging with my disabilities. This is my truth. I wanted to learn more about other folks’ experiences so I talked to members of the Diversability Leadership Collective about how their bodies have changed over the years. Here’s what I learned.
Ariele Bagat
@wordlovesculpt (She/her)
“As I have aged and had multiple autoimmune flares, I have begun to consider myself disabled and become more confident in that identity.”
Ariele Bagat was diagnosed with an autoimmune disease, Sjogren’s Syndrome, at 16 years old. In addition to the expected symptoms of her disease, Bagat dealt with hypothyroidism, migraines, POTS, neuropathy, trigeminal neuralgia, and balance issues.
Bagat, now a graduate student, has learned to make adjustments throughout her life to accommodate her disability. She knows when her body requires rest, days that she needs to work from home, and when to adjust from standing to sitting to preserve her balance. Through all of this, there is a sense of peace and ease. Bagat acknowledges that although her health is declining, it is easier for her to accept because she is feeling more comfortable in her own identity.
Bagat admits that she still has the tendency to compare her body and capabilities to others around her. This is what upsets her most about the decline of her health as she gets older. However, she is reminded that “there is no normal and I should absolutely be as outlandish or odd as I want to be”.
Mary Fashik
@MaryFashik she/her
“I have learned to listen to my body and not let myself be gaslit by doctors or others. I’ve also learned to do my own research in order to really understand what I’m experiencing at any given moment.”
Mary Fashik was diagnosed with Cerebral Palsy (CP) at the age of 2. Fashik, now in her mid-40s, has spent her life transitioning between various mobility devices — a pushchair, walker, and more recently a motorized wheelchair. She admits that the use of the motorized wheelchair gave her more independence.
Although Fashik was taught that CP was not a progressive condition, by 30 years old, she was diagnosed with arthritis. This diagnosis has landed her in chronic pain, fatigue, and loss of mobility. “Aging with CP kept doctors from realizing that I was also chronically ill. They attributed all my pain and fatigue to ‘just Cerebral Palsy.’”
As an adult, Fashik is increasingly aware of the need for research and advocacy in the CP community. For this reason, she spends her time speaking out on her podcast, The Politics of Disability and uplifting the experiences of disabled people.
Neil Hughes
he/they
“My hope is not to live a long time but to add my voice and tell this story so kids will more likely get the co-regulation and physical play that can overwhelm the nervous system with joy.”
Neil Hughes is a 52 year-old with Functional Neurological Disorder (FND). FND has caused chronic lower back pain, anaphylaxis skin reactivity, vasovagal syncope (dissociative seizures), and bouts of fatigue and burnout. As a child and young adult, Hughes was countlessly misdiagnosed and overmedicated. Hughes experienced physical trauma from accidents and experienced sexual abuse, which both deeply impacted his experiences of PTSD. However, Hughes has cultivated feelings of joy in his life.
Over his lifetime, Hughes has been diagnosed with several conditions before discovering the FND diagnosis. Diagnosis ranged from attention deficiencies, brain trauma, PTSD, and manic depression. As he ages, Hughes recognizes that over the years science and technology have improved the outcomes for people with FND. FND was previously understood as a psychosomatic behavior.
For Hughes, physical movement and co-regulation help to restore his nervous system. He has practiced yoga since 1985. He believes that movement therapy has been especially beneficial for his health. “Move the body to heal the body.”
He has adjusted his medication over time so that he is no longer taking medications that cause him to feel dissociated. Hughes acknowledges that his source for comfort and information come in safe space communities like the Diversability Leadership Collective and books that address healing from trauma.
“Aging with a disability like FND means the treatments get better, but the damage is already done from years of misdiagnosis and medications being pushed with faulty science.” Hughes is grateful to see the advances in neurology, psychiatry, and medical research. To Hughes, the future is bright for FND survivors– survivors must be able to find joy, safety, and the balance between anxiety and gratitude.
Nico Meyering
@namestartswithn he/him
“The future is unknown. Nobody with CCHS has lived into senior citizen age, yet. What will my ventilator needs look like when I’m 85 and fall asleep at the slightest whim? What will my independence look like?”
Shortly after his birth, Nico Meyering was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), a rare nervous system disorder that suppresses his breathing. As a resulty of CCHS, Meyering uses a mechanical ventilator during sleep and illness. As a young person, Meyering relied more heavily on the ventilator. However, as a 34 year-old CCHS patient, he only uses the vent during sleep, he has chosen to remove his tracheotomy (port in the neck to connect to breathing equipment), and had scar revision surgery to help improve his confidence. With less reliance on the vent, Meyering notices that he is more alert, energized, and able to regulate his body more as long as he gets adequate rest.
As Meyering ages he has become more aware of the impact CCHS has had on him emotionally. He has experienced the sudden and early deaths of 13 of his CCHS friends. This grief is embedded in his daily life and drives his advocacy.
He also witnessed how his diagnosis has heavily influenced his relationships with family, partners, and friends. As an adult, it has been challenging to digest the feedback of how stressful his disability and hospitalizations were for those he loves.
Meyering is a dedicated advocate in the CCHS community and travels worldwide to educate and connect with family-based support groups. He is grateful for the growth in research of the disease, treatment options, and survivorship. “With more and more of us surviving into adulthood and now into middle age, we get to have careers and families. We get to tell stories of CCHS success, which is especially important since each CCHS success story looks a little different.” He finds comfort in knowing that his challenges with CCHS have played a role in improving the quality of life and health of future CCHS patients.
Jessie Wusthoff
she/her
“My body will keep changing and I’ll adjust along the way, but the best part about being 40 years into my disability is that I understand my body so much better than I ever could have even just 10 years ago.”
Jessie Wusthoff lives with a congenital disability; she was born with bones in her left leg being shorter than her right leg. Forty years ago, doctors told Wusthoff’s parents that she would never walk, but she was walking at an early age. She experienced over a dozen surgeries and various prostheses to support her leg. As a result of her disability and subsequent surgeries, Wusthoff began to experience daily chronic pain when she entered her 20’s.
Wusthoff spent years working to reduce her pain with little progress. Now in her 40’s, Wusthoff is more aware of her pain triggers and how she responds to them. In order to cope, she knows she must maintain a stretching and exercise regiment. When she was younger, she could power through her pain more easily; but now, she is more aware of how she takes care of herself. She also understands how her body and mind are connected. When she is in more pain, her temper is shorter. Now, with more self-awareness, she is able to acknowledge when her temperament is associated with back pain or needing a break from the computer.
“I definitely understand my disability much better, which means I can take much better care of myself. That’s been the biggest gain in terms of aging and my disability.”
Now that she is older, she is able to focus on taking care of herself without shame. Wustroff believes that self-care is something everyone should indulge in. Though self-care looks different for everyone, it is still necessary.
Overall, it is monumental for some disabled folks to witness the changes in their minds and bodies over the years. Getting older and growing up with a disability may allow people to embrace the challenges and triumphs along the way. These disabled contributors are strong examples of what it means to grow into your own.
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About the author
Arielle Dance is a Content Writer at Diversability who identifies as a Black queer woman with disabilities. A Ph.D. in Mind-Body Medicine, Arielle is published on multiple online platforms and has a children’s book, Dearest One, which focuses on mindfulness and grief.
The author would like to thank Diversability Leadership Collective members Ariele Bagat, Mary Fashik, Neil Hughes, Nico Meyering, and Jessie Wusthoff.