Every afternoon, it is the same: I walk into my daughter’s day care classroom and she comes running toward me, arms raised, chanting “up!” And every afternoon, I kneel down, give her a hug, and gently remind her that I can’t pick her up.
What kind of mother refuses to pick up her child? What kind of mother winces at the very idea and instead cajoles, bribes, and hurries her child into physical independence? A mother with chronic pain.
I was born with damaged nerves in my face and head, spontaneously developed pain in my right wrist during college, and started experiencing intense muscle spasms in my neck and shoulders in 2009. My wrist pain was misdiagnosed as carpal tunnel syndrome, tendonitis, and arthritis until an MRI taken eight years after the pain began showed torn cartilage. Four operations to repair the cartilage and other damage have resulted in scar tissue, atrophied muscles, and a stump of an ulnar bone that knocks into the radius bone in my right arm with disturbing regularity. On a good day, parts of my body feel weak. On a bad day, the spasms grip not just my shoulders and neck but also my head and jaw. Sometimes, even blinking hurts.
When my husband and I started talking about having a child, we looked for information about pregnancy and chronic pain. What we found was hardly definitive. As one specialist summarized it, for women with chronic pain, approximately one-third find that pregnancy alleviates their pain, one-third feel no change, and one-third experience worse pain than pre-pregnancy. I fell primarily into the second category, with occasional crossover into the third (mostly because I had to stop taking muscle relaxants). But overall I was lucky to have an uncomplicated pregnancy and labor.
Then the luck ended. My daughter is healthy and happy, but my own health has gotten much worse. The early months of changing diapers and clothes, nursing, and lifting her in and out of her crib caused irreparable damage to my wrist and shoulders. I can’t push her stroller much farther than the three blocks between home and day care. I can’t dress her by myself, or tie her shoes. I can’t make the appropriate hand motions to accompany “Itsy Bitsy Spider,” write out the alphabet, or brush her hair. But all that feels like mere window dressing for what I really can’t do: feel at all confident that I can take care of my child alone for more than an hour. On the few occasions that I’ve had to, the time passed in a blur that left me incapacitated and in tears.
They are tears of pain, but also of frustration. I have never known a day without pain. It is highly unlikely that I ever will. As one surgeon told me recently, when we discussed the pros and cons of a fifth wrist operation, in each of my previous surgeries the majority of patients would have had significant pain relief. I keep defying the odds in the worst way possible, joining an ever-smaller percentage of pain sufferers whose conditions are not just chronic but truly lifelong.
At 2 years old, there’s not much that my daughter can do without assistance. But I’ve taught her how to scoot down stairs, climb onto the couch, and get into her stroller. And I know that soon she’ll be even more independent, and that in theory one day I should be able to take her to the playground or library or a restaurant without needing another adult present. But so much about my condition is unknown, and so much of it has already defied conventional medicine and wisdom that it’s hard to trust those future possibilities.
In my more optimistic moments, I think of the possible upsides. I hope that having a disabled mother will give my daughter an object lesson in empathy and patience, and increase her comfort around people with different capabilities. (This hope is reflected in a 2008 study that found that “maternal chronic pain can catalyze enhanced development as well as adversity,” although to be fair, most studies about chronic pain and parenting indicate that children are adversely affected by having parents, especially mothers, with chronic pain.) I hope that having a father who takes on the bulk of domestic duties and parenthood responsibilities will show her how fluid gender roles can and should be. And I hope that she’ll see that having a disability doesn’t mean that specific limitations are the sum total of a person’s life.
I also hope that she will know how important it is that partners communicate honestly, because otherwise I doubt my husband and I would still be married, let alone parents. We chose to have a child. It was a decision made after months of deliberation, conversations, and consultations. We went into parenthood as prepared as possible for what might happen, even as we reminded each other and ourselves that becoming parents is full of unexpected challenges for even the healthiest people. Still, that my condition affects my husband in profound ways is undeniable, even as he has accepted it so fully that we left “in sickness and in health” out of our marriage vows because he knew I’d always have health problems. But neither of us anticipated just how inflexible his life would become after our daughter was born. Any time she needs to stay home from day care, my husband has to take that time off work, even though my job is much more flexible. And unlike other two-parent families we know, in which one partner can spell the other on weekends and spouses take turns with the evening routine, he is the only reliable and consistent parent our daughter has. Talking about all of this helps, so we do—a lot. But words only go so far in mitigating the frustration and stress of our unbalanced marriage.
If I had known how tough this would be before getting pregnant, would I have made the same choice? I want to say yes without hesitation or qualification, but that’s not the honest answer. The honest answer is, I don’t know. I love my daughter. That has never been in doubt. But I hate what a toxic combination motherhood and chronic pain are for me. Perhaps the best way to answer that question is to say this: My daughter will never have siblings. Both my husband and I do, and I wish that she could know what that relationship is like. But raising another child would take a much greater toll on my health than I am willing to accept.
But while I will never be a mother to more than one child, I am a mother. And even though there is so much that I can’t do with my daughter, and more that I might not ever be able to do, there is still this: She can sit on my lap and listen to me read Harold and the Purple Crayon and Hop on Pop over and over. I can lie on the floor of her room and make her giggle just by letting her cover me with stuffed animals and toy ducks. And when we get home from day care and stand at the bottom of the porch steps and she lifts her arms to be carried, I can sit down on the lowest step and put my arm around her as she leans against me, and we can watch the evening settle around us until we’re both ready to walk into our house.