Danielle Hines
Unlike some childless women, my tragedy doesn’t include a defining moment in which I learned I wouldn’t be a mother. Instead, there were all these otherwise seemingly insignificant snapshots of my life that, when looked at all together, led to me having to make the decision for myself.
Images of my husband helping me walk to the commode and back into bed each evening, lifting my weakened body from the floor on the nights I collapsed. We joked that we were slow dancing, just less gracefully. A weekly desk calendar, once used for jotting down work deadlines, blank now for almost a decade. The look on my physician’s face when she informed me that despite everyone’s best efforts sometimes the answers don’t come in our lifetimes, and the tears of frustration on the car ride home at the recognition that the minor improvement in my symptoms is as good as it’s going to get.
My story is not about the inability to carry or birth a child, but instead about having to weigh my intense desire to be a mom against the knowledge that, due to my disability, the type of life I would want for my child is sadly not one that I am able to provide. Biology did not make that call for me, though I often wonder if this distinction would have made my childlessness easier to accept. My illnesses, while debilitating, are unlikely to prevent me from birthing a healthy child, which has meant that I am the one denying myself of my dream of motherhood. Each day I am forced to remind myself of the reasons why I’ve made this decision and fight the urge to say, “Screw it, just go for it and you can figure out how to handle it all later.”
My health issues began in the autumn of 1995, at age 13, after suffering a severe allergic reaction to the inhalation of poison ivy fumes from a bonfire. My face rapidly ballooned and I was unable to open my eyes and mouth, making it difficult to catch my breath. Physicians remarked they had never seen a case like mine, as they skated in and out of the hospital room snapping photographs. It’s hard to say if this allergic reaction is responsible for all the health issues I now face or if it was simply the catalyst for underlying illnesses that would have surfaced sooner or later. What I do know is that from that day forward, physical pain has been a constant in my life.
For three years, there was a revolving door of doctors with no answer for my ailments, until at age 15 a stern-faced rheumatologist told me I had fibromyalgia and that everyone has some pain, so I just needed to get tougher. But try as might, I just couldn’t get my body to get on board with all the things I wanted to accomplish. High school and college felt like a drawn-out déjà vu, beginning with high hopes at the beginning of the semester and a feeling of defeat when I inevitably signed the withdrawal slip a few weeks later. As hard as those years were, they felt relatively mild in comparison to the swift downward spiral that began in 2012.
In July of that year, I began experiencing bouts of vertigo. And the fatigue, which had always been present to a certain extent, increased tenfold. I started having trouble bathing and felt unsafe driving. As a technical writer, my office hours dwindled, and most projects were completed from the comfort of my bed. On Labor Day, all the symptoms that had been brewing beneath the surface seemed to bubble over, and I collapsed to the floor on my way to use a public restroom, unable to walk a step further. I used a wheelchair for the first time that day.
The weeks and months that followed were a blur of hospital stays, medical testing, and disability paperwork. I was eventually diagnosed with chronic migraine with brainstem aura (which presents similarly to a stroke, with ataxia, aphasia, and decreased consciousness), small fiber neuropathy, and postural orthostatic tachycardia syndrome (POTS), which is a malfunctioning of the autonomic nervous system that results in a drastic increase in heart rate with upright positions resulting in shortness of breath, palpitations, fainting, and fatigue.
I can’t overstress how difficult the nine years that followed were because of these conditions. How strange it felt to have to rely on other people to take care of me, to provide most of my financial support, to drive me to and from the grocery store, to pick me up off the floor when I collapsed, to rearrange their schedules to accommodate yet another doctor visit. How frustrating it was to only have one or two less symptomatic hours each day. And yet, I kept thinking that all of this was temporary, that there would come a day when I would be well enough to work, to drive, and to have children.
From as far back as I can remember, I’ve dreamt of being a mother. It didn’t matter how sick I became, I couldn’t imagine a future without motherhood at the center. So, I held out hope that things would change, that my symptoms would improve enough to one day make it feasible. I began to dislike New Year celebrations and would feel pangs of sadness in the weeks leading up to each birthday because those events meant that another year had passed without much progress. I was angry that I couldn’t slow time down and that life kept moving forward whether I wanted it to or not.
Two years ago, watching my brother and sister-in-law await the birth of their second child, I remember thinking this is not going to happen for me. Side by side, my day-to-day reality looked completely different than that of my sister-in-law and of the other pregnant women I knew at the time. That’s not to say that their lives were perfect, but these women were able to work, drive, and walk to their mailboxes. They weren’t having to answer yes for the umpteenth time when the nurses at their medical appointments asked if they had fallen within the last 30 days.
The recognition that I needed to let go of the dream of motherhood led to a deep depression, the likes of which I didn’t think I would ever move past. On one of those sleepless nights when I was scouring the internet looking for something that would let me know I was going to be okay, I stumbled upon Jody Day’s TED talk. Up until that point, I’d never heard anyone talk about being childless not by choice. I then purchased her book, joined Gateway Women (now The Childless Collective), sought out podcasts like The Full Stop, and began CNBC meditation classes with Bindi Shah. Slowly, with counseling and the help of others in the childless community, the depression has begun to lift.
I still experience waves of grief, but they are becoming fewer and further between. I find the waves hit especially hard on days I am feeling better physically. Those days, it’s easy to think maybe I could have handled having children. But feeling good doesn’t ever last long, and my body once again rudely reminds me of my limitations. It’s an exhausting cycle. Sometimes I wonder, had someone else been dealt my hand, could she have made it work? Am I just not strong enough? Am I still allowed to grieve like other childless women when I am the one deciding that I can’t navigate these disabling symptoms and raise a child at the same time?
The media loves stories of disabled individuals who seemingly do not let their circumstances slow them down, as though disabled people are only worthy of respect if they are providing inspiration to onlookers and promoting the idea that pain shouldn’t stop you. Perhaps I am guilty of internalizing this message, and it’s my definition of strength that needs to change. Maybe it requires just as much strength to say, “I can’t do this.” After all, letting go of my lifelong dream, confronting my grief, and acknowledging that whatever future I create for myself going forward, I need to be honest about the fact that my illnesses will be part of it is proving to be one of the hardest things I have ever done.
At the end of the day, I am choosing to trust myself and my own body and to honor that tiny voice inside me that reminds me that both things can be true: I really wanted to raise children and not like this.
