I was diagnosed with spinal muscular atrophy
—a genetic disease that affects nerve cells in the spinal cord that control the body’s muscles—at nine months of age and was given nine years to live. Now, at 24 years old, I find myself grappling with a variety of mental illnesses. My education in psychology has provided me with the language necessary to describe my experiences, particularly my relationship with grief.
For me, mental health revolves around the concept of “ambiguous loss
,” or loss without closure or understanding. Similar to a quadriplegic, my body is present, but there is still a sense of emotional disconnect, an inability to merge to the fullest extent with my physical self. My disability prevents me from participating in the normal flow of life.
I only recently got a part-time job. I live with my parents and am physically reliant on them for the fulfillment of my biological needs. At 24 years of age, I should be moving out, pairing up, considering a family of my own. There are rituals associated with adulthood, like engagement parties and baby showers, which I observe from a distance—physically present but emotionally distant. I participate in the culture of it all, but I am not part of it.
My grief is full of tension. I know what I’m missing out on, but there’s still that disconnect. I grieve, but it’s only because I can see the differences in my life compared to those around me. I don’t have a car. Dating as a disabled woman is as difficult as it sounds. I love kids, but even if I was interested in becoming a single parent, I physically would not be able to.
There is something missing from my life, so I try harder. I join every dating app on the market. I spend thousands of dollars on an M.A. so I can have a full-time job, despite the fact that working full-time will likely result in chronic pain, fatigue, or even hospitalization. I mold my life until it looks “acceptable.” The square peg of who I am doesn’t fit the round hole of culture, but I am stubborn. I shove until my corners chip away.
Lately, I have been reflecting on the concept of “psychological flexibility
”: showing up to the present moment with acceptance and committing to behavior that aligns with a person’s values. When narratives do not serve them, they consciously step outside that framework to pursue new and more meaningful ends.
Years ago, when psychology first came on the scene, professionals used the life-cycle theory to describe the general path from infancy to old age. Children become adults. They leave their parents and start families, usually with someone of the opposite sex. They work until they can retire; if they can’t retire, they work until they die. With time, it became the social narrative of our culture.
The issue is that one-size-fits-all narratives do not consider the marginalized. Disabled people often cannot separate from their parents; the concept of the nuclear family ignores people of non-binary genders or same-sex partnerships looking to raise children of their own. Retirement is a myth for those who are systematically disenfranchised.
Square peg, round hole. Chip, chip, chip.
Psychological flexibility is letting go of narratives that do not serve me. The life-cycle theory does not reflect my reality, so why do I chase markers of a “normal” life when those things do not align with my values? I believe in community and connection, well-being, social activism. It doesn’t make sense for me to spend time and energy on dating apps when platonic partnerships bring me fulfillment. It doesn’t make sense for me to work myself into the hospital when, due to financial restrictions, I can only work part-time anyway.
Psychological flexibility is recognizing the inevitability of grief. I will always feel like I have lost something; I will never truly know what that something is. But joy is just as inevitable, so long as I step outside the narrative of what is “normal” and blaze my own trail. Life, for me, is part-time pay. Life is traveling with my parents and pouring into my friends’ kids. Life is community and connection, social activism through storytelling, rejecting what has always been to create something new.
Square peg, square hole. I am tired of wearing my edges down.