I became a parent at 32. It was planned, desired, and celebrated.
I became a patient at 34. It was unplanned, unwanted, and feared.
These two roles are intertwined; one often affecting the other. My pain levels dictate what I can and cannot do with my son. A walk to the basketball court — no. A shorter walk to the library — yes. Helping my son practice riding his two-wheeler — no. Helping my son practice his poem for school — yes.
Only one was by choice, and one brings me considerably more joy than the other, yet both roles share many similarities.
- They’re never-ending. These are life-long roles; I will forever be the mother of a son and a woman diagnosed with Undifferentiated Connective Tissue Disease, an autoimmune disease. My seven-year-old son may no longer need me the way he did as an infant. And one day, he’ll surpass my 5’6”; but I’ll still be his mother. Likewise, my autoimmune disease may go into periods of flare-ups and remissions. I may modify medications and adjust the frequency of my doctor’s visits. But I will still be living with a chronic condition that has no cure.
- They’re prohibitive. Since becoming a patient, I cannot drink alcoholic beverages or have another child (due to my medications). I can’t easily climb multiple flights of stairs, and I can’t effortlessly stand back up after sitting on the floor. Since becoming a mother, I must weigh what I can and cannot do in terms of child-care. I make all appointments during school hours.
- They’re expensive. When it comes to my son there’s always something to buy. New shoes. A holiday gift for his teacher. School fundraiser. A birthday gift for a friend. As a patient, there are prescriptions, co-payments, and parking fees for each doctor’s appointment.
- They’re exhausting. I’m a reading-together, homework-checking, ball-playing, art-making mom. Even without a medical condition, it would be challenging to keep up with my son’s energy and exuberance. But, still I try. I push myself to play handball because, for now, my son still wants to play with me. And, living with chronic pain means all my daily tasks are made more difficult. Unloading the dishwasher, grocery shopping, and laundry are not easily accomplished. I do them; I struggle, I wince, I cry. And by evening, I can barely move.
- They’re a part of my identity. To a certain extent, I am defined by my roles. I am Ryan’s mommy; the mother of a second-grade boy. I am a former teacher. “Former” because I can no longer work due to my medical condition.
- They are motivators. I strive to be the best version of myself for my son. He is taking his cues from me, and I strive to be a worthy role model. I’m also a dutiful patient, taking my medications on time, keeping all my doctors’ appointments, doing what I can so that my pain is manageable, and I’m here for my son.
- They’re time-consuming. There are school functions to attend. Trips to the store for art supplies for a school project. There are phone calls to make to the insurance company, minutes spent waiting — in a doctor’s waiting room, in an exam room, on the phone on hold.
- They’re body-changers. My breasts are larger than they were before I was pregnant. My stomach is rounder than it used to be and adorned with a few stretch marks that haven’t completely faded away. I have a scar on my left leg from a muscle biopsy, and my medication caused a weight gain.
- They’re teachers. Each role provides me with the opportunity to learn and expand my ideas. Becoming a mother has made me more self-aware about the things I value most and the ways I’m raising my son. As a patient, I’ve changed my definition of “disability.” I used to think that a disabled person was someone who looked the part — walking with an assistive device or using a wheelchair. Now, I know that anyone can be disabled, and that most people have hurts and scars.
It’s easy to focus on the things I can no longer do, the problems associated with being a patient. Likewise, it’s easy to feel overwhelmed, overburdened, and overextended when it comes to all the aspects of parenting a young son.
But, then there are the times my son spontaneously kisses my hand. The times we sit on the couch reading together, and my son places his arm around my shoulders. And I know I’m quite lucky.
It’s not easy to regard my physical limitations with kindness and patience. But, the juxtaposition of my roles as parent and patient have helped me change the way I look at my medical condition and try to put it into a different context.
As bad as it is to live with an autoimmune disease, I know things could be worse.
And as great as it is to be Ryan’s mommy, it isn’t always great.
There are two sides to every coin, after all.