I wasn’t always disabled but I’ve never been healthy. I was born without fingers on my right hand and my childhood was marked by dozens of bizarre health problems that never fit into a neat diagnostic checklist or box. I was born decades before mitochondrial disease would become a household word and long before the idea of genetic diseases themselves burst into the forefront of science. I didn’t know my childhood ailments would metamorphose into disability in my 30s. I assumed I had the same health expectancy as everyone else. I wasn’t in good health but I wasn’t precisely unhealthy, either.
I hoped and prayed for a healthy baby just like you. I went to ultrasounds desperate to count 10 fingers and 10 toes. I begged whatever god might be out there to spare my children from my own disfigurement long before I knew my missing fingers would be the least of my health challenges. I knew, or at least thought I knew, that life is better with good health.
Being diagnosed with an untreatable and incurable disease didn’t change my feelings at first. Rather, as I began to face the possibility that my genes might condemn my children to disability, I was desperate for them to avoid the same fate. Genetic disease inheritance is like Russian roulette; no one knows which of my children may have inherited my mutated gene. Each child has their own 50/50 shot of having inherited it, and none of them have been tested to find out. All, some, or none of them may carry my genetic soup, and my first inclination was to test every single one of them to find out.
There are many practical and ethical problems with testing largely asymptomatic children for incurable diseases. No one is going to pay $25,000 to test each child’s entire nuclear genome just to ease my fears. It was hard enough to get my own testing done, after years of insurance hold-ups, and I have the hefty medical bill to prove it. Even after my testing was completed, all it identified was a gene that’s predicted in computer and lab models to cause the type of disease I have. In medical terms, testing my entire genome got me no more than an educated guess. Expanding that guessing game to my children simply doesn’t make sense.
As much as I want to believe my younger self would have wanted to know my future, a part of me knows it isn’t true. I was barely capable of understanding this disease at 35, much less 15. It’s taken me years to comprehend what it means to live with a progressive disease and there are benefits to coming to terms with that knowledge as it evolves, rather than years before symptoms become disabling. Some of my older children don’t want to know what their futures hold. They want to play football in the NFL and learn to surf in Australia, and they want nothing to do with the idea of turning out like me. I want nothing to do with being the person who crushes their dreams, and who’s to say they are better off having them crushed?
The hardest part of becoming disabled was losing my hope for the future. When nothing but disease progression stared me in the face, there was nothing but misery to look forward to. I had so deeply internalized our cultural messages about health and value that I struggled to find meaning or purpose in my own existence. There is nothing beautiful about weakness and I believed it when society told me being unhealthy is weak.
No one means to spread these kinds of damaging and cruel ideas about the chronically ill and disabled. Most people probably never consider how their own obsession with being healthy ostracizes and otherizes those who can never be healthy. Ableism is all around us and even many disabled people struggle not to spread it. I reject things like wheelchairs that could help me because it makes my life easier not to be immediately perceived as sick. I am still able to pass as healthy. I’m aware of my privilege, and I chafe against it, but I don’t give it up.
I used to care a lot about being healthy. I thought being fat was a sign of weakness. It meant I ate too much, or exercised too little, or didn’t love myself enough to take care of my body. It took forgiving my body for its faulty genes, wide hips, and droopy arms to realize my body was never weak — I was never weak. I’ve had the deck stacked against me since utero and my body has done the best it can with what it has. I have lived a beautiful and meaningful life, even in this broken, damaged, incomplete, fat body.
I am not afraid of my children growing up like me anymore. I know they will face a world that views disability as something to fear and avoid, but those are cultural constructs not universal truths. I have met women raising children while hooked up to ventilators around the clock and I cherish them not because they are there for my inspirational consumption but because they are the strongest women I know. They are beautiful, kind and downright hilarious, and they’ve taught me what I’ve been told about health is all wrong. It doesn’t matter so much whether our bodies or minds are healthy — it matters how we live our lives.
I haven’t forgotten what it’s like to move freely: to dance, leap, and twirl, breathless and sweaty, heart pounding with exuberance and exertion. I don’t have those experiences anymore but they have been replaced by quieter, smaller moments of joy. It’s not the same but it doesn’t have to be — joy is joy, whether it’s found in dancing or quiet contemplation, a smooth flat stomach or a dimpled sagging belly. My health doesn’t look or feel like yours, or even what my health once was, but it doesn’t have to. My body is still strong, especially when it’s struggling, and so am I.
None of us are guaranteed a long and healthy life. We lie and promise ourselves we’ll grow old and hearty, but we all have an expiration date. Even some of my closest friends still believe they can ward off my fate by eating right, exercising and having more “willpower," but eventually we all die no matter what we do. Most people, like my children, guard their health jealously, terrified of having it ripped from their clutches somewhere along the way. That fear fuels them and it’s what lurks behind their "concern" for my weight and health. I used to feel that way, too, but now I know how tenuous my health always was.
It's tempting to believe that good health is always within our grasp, or to pity those we perceive as unhealthy. But we are all capable of leading meaningful, joyful lives, regardless of the bodies we were born into. Set aside your prayers for a healthy child and focus on nurturing a joyful child. Stop wishing for their good health and cherish how your child's body sustains them. Shifting our focus from how our bodies work to what we do with the bodies we have creates a conversation that’s accessible to everyone.