Matter Over Mind: One Mothers Malady by Maria Rowan

Healthy people live in a different country than people who face chronic illness. Sometimes when I'm around other mothers I forget I have peculiar health problems. After all, we talk about bizarre infections, uncertain test results and emergency surgeries all the time. When I mentioned that getting evaluations of my degenerative spinal condition was delaying the conception of a second child, I didn't mean to direct the conversation away from kids, but my friend, Nan seemed shocked.
What can they do to stop that? she asked.
Nothing. Its a matter of not aggravating it.
You wont be able to walk? Youll be in a wheelchair?
Nonononono. Thats highly unlikely.
But how can you walk if your spine degenerates? You cant walk with no spine.
I suddenly realized she envisioned my spine crumbling to dust, not bending and twisting in torques and compressing nerves and irritating ligaments and who knows what else. No one seems to know for sure, but I explained a little more of the speculations and the possibilities between cartwheels and wheelchairs. She listened attentively as I described the customs of the country of lumbar fusions, thoracic spurring, scar tissue and nerve compression. I was relieved. These conversations make and break friendships.
Many people live in a world of brave paraplegics and the boundlessly healthy. Their assumptions rest on the idea that if you are paraplegic then you get mechanical equipment or a cool dog and with these and a little spirit you can be a good example to us all. (The fact this also takes combinations of luck, good insurance, good advocates or money is a reality that is off the radar.) Otherwise, people believe there are no injuries and no illnesses that willpower and determination cannot overcome with the help of western or alternative medicine. Infirmity must be due to a lack of personal strength and character, not physical fact.
I entered the realm of medical reality at the age of nineteen. I was in a car wreck that shattered a lumbar vertebra. Conveniently we crashed near a major orthopedic hospital and a surgeon extracted all the tiny shards, removed a piece of my hip bone and created a new vertebra from it. He fused the constructed vertebrae to the two on either side for stability and sent me back to college in a body cast.
I made a lot of new friends when I was in my body cast. They were the people who said "I'm having such a crappy day, but hey I'm not in a body cast." and I would say "No please tell me about your crappy day." We had coffee. We commiserated.
I ditched some old friends. They were people who said "What's your problem? You're not in a wheelchair. So just shut up about not being able to walk up and down stairs. You have to keep your chin up and I'll tell you about my roommate's latest transgression."
I developed a new rule of social etiquette. If you are not in a wheelchair, then its rude to say At least you arent in a wheelchair.
In some ways, being in a body cast is easy. Its pretty obvious when you are encased in plaster that something is wrong. The following decade out of the cast included many more explanations. People assume that everyone in a room is healthy.
"How come everyone is a feminist until the furniture needs moving?" an acquaintance demanded as I watched him move a friend's couch.
"Because the feminist broke her back," I snapped.
If only all the challenges were that easy as the one liner. I gave up a work-study position because I could not get people to understand chopping vegetables and stirring pots was okay, but hauling around racks of coffee cups was not. After that experience approaching any request for accommodation makes me nervous. Recently I asked to give up physical labor duties at my daughters cooperative playschool. I worked myself into a state of fear and determination, only to have another parent overhear and gladly trade my cleaning hours for her fundraising hours. I felt like I had won the lottery, but Im still self-conscious that someone will see me pushing my daughter in a swing and wonder why I can do that but not stack chairs and vacuum.
I often dont have an answer to why I can do one thing and not another. Why is washing dishes at a sink excruciating when pushing a grocery cart is not? Too often when a person with chronic health problems describes their situation, the other person tries to fix it with suggestions or minimize it with comparisons. Sometimes its hard to tell the difference between the two.
Before I ever conceived I enviously eyed mothers with beautiful Guatemalan baby slings in the local cooperative grocery store. An unpredictably easy pregnancy increased my confidence that I could baby wear.
A little tiny infant could not be heavier than a small bag of groceries or a huge pregnant belly full of water. At just seven pounds, my girl was hardly a burden, but the ergonomics were all wrong. The muscles in the abdomen that cradled my baby-swollen uterus were different muscles than the ones required to swing her securely on my hip while I picked out fresh ripe tomatoes. I could carry her from place to place in short bursts, but I could not sustain carrying her with me as I went about my activities. I sadly retired my slings and adapted to a fairly sedentary life of holding her while I sat supported by pillows or laid stretched out on our bed.
While discussing breastfeeding and co-sleeping with a fellow mother, I described my disappointment. She insisted that my conclusion that I could not use a sling was wrong. She experienced discomfort at first and with weekly visits to a chiropractor she was still using her sling with her toddler. I explained that I wasnt dealing with a question of discomfort or even simple pain, but of causing aggravation and possible permanent damage to an existing injury. My friend would not hear it.
Didnt I know women all over the world did this? And they had for centuries? Had I tried every sling on the market yet? Front carriers? Back carriers? Her tone became less and less conciliatory and more accusatory. How did I manage lifting my baby in and out of a car seat? In and out of the bath? If I could do those things, why couldnt I manage sustained carrying? Had I even tried a chiropractor? Acupuncture? Yoga? Massage therapy? I ended the conversation with My spine once made a massage therapist cry.
I have never figured out what she thought I was trying to get away with. Sharing my experiences can be so exhausting I often refrain from doing it. But having a child is pushing me out into the open.
Because she needs me, I am a resource worth preserving. Because she needs something I can not provide, I must ask for it. Instead of avoiding community, I must create it. Besides she tells random adults that Mommys back hurts. Ive become aware that my silence is complicity. By not speaking up Ive added to the illusion of the able-bodied society. By not speaking up Ive gotten in my own way. Its time to start drawing the map of the murky interior where I live and pave the way to a country where people with chronic health challenges are accepted on their own word without question.
Maria Rowan is an artist and the mother of a 2 year old daughter. She enjoys hiking, yoga and hot baths. She does not enjoy backpacking, Pilates or unloading her dishwasher.