If I had allowed someone to support me, I might have had a witness to the most difficult years of my life. It could have turned out differently I suppose, if I’d allowed myself a companion as I ran the rare disease gauntlet with my son.
But I wasn’t able to. I was conditioned to be an island. My script featured a lone protagonist. I was a habitual rejector of offers of support.
So it was alone that I found there exists a dark place; it’s one past crying, and just this side of hysteria where you feel as if you are caught, no longer flailing, rather riding the endless whirlpool in a draining sink. The trouble coming in equals the pain draining out. In this place you have energy left and against all odds - and even your desires - you are still alive.
Yoga taught me that my body carries stress across my shoulders and in my chest. (Those of you in the know please insert chakra name here.) I could feel something more menacing than tension in the months and years during my son Adam’s treatment for the large, growth-hormone secreting pituitary tumor that caused his gigantism. My posture adopted a rolled-in shoulders, huddled-over-a-desk-studying look to it that I could not stretch out. I rode in the car bent forward. I sat at the dinner table hunched over my plate and then retreated to my bed to curl even more tightly into a fetal position. I was protecting my core, the yogis would tell me, and only psychological work and a lot of time on the mat could get me to open up enough figuratively and literally, to accept the hand my boy had been dealt. Rebuilding my identity after dedicating years to his health care would take way more than yoga and therapy.
When I started writing a book about these years, which meant looking at what had happened to us, to me, I found myself eroded. I was sleep deprived, dehydrated and poorly nourished, cramped with the constant nausea of an ongoing state of panic that took me well beyond tears into involuntary teeth and fist clenching.
I had been patrolling the perimeter of my son’s world, constantly offering up pieces of myself as bargaining chips for his future. Somewhere along the way I got divorced, moved my boys and I away from the house they grew up in, destroyed friendships and alienated myself out of gainful employment. Adam (and his brother) were my life’s work, the reason I was alive. I couldn’t see anything beyond Adam’s medical needs and trying to keep life somewhat normal for them. How could anyone help me with that? What support could someone else possibly be?
Through all of this, I stopped knowing who I was. I lost myself. Parents of kids who live with chronic and critical diseases and disorders are not quite whole anymore: they are assemblages of limitless energy, capable of morphing and moulding into whatever the medical system and their child’s symptomology demands. Rare disease Moms are first responders who have a Ph.D in their own child. We persist without self; rather possessing the burden of multiple identities, conserving energy in a unique state where tears are not allowed to deplete us and complete breakdown is out of the question. We are Mom. I am Mom.
I remember the muscle spasms in my shoulders and lower back that I pushed through because it was too dangerous to slow down from day-to-day life and rest. I’m sure there were myriad offers of help, options for taking time away for myself. I did not want to risk it – I didn’t want to know how broken hearted I really was. Had I listened to my body, I might have seen that what I was really avoiding looking at was what was left of me.
I say thank you here to the people who tried (and tried and tried) to get me to accept their help in those years. My apologies to my best friend and my long suffering sister who bore the brunt of my self-destructive independence. I refused you all. I suffered for it. But my son had everything I thought he needed, and for me, that was what mattered.
We are a rare breed.
We are rare disease warriors.
What is a kind, well-intentioned supporter to do, then? A lot is written about what not to say or do when someone’s child is ill. I’ve written those posts too. My one piece of advice? Wait just outside the perimeter until the drawbridge drops and the gates fly open and we come running out all wild-eyed and crazy-haired, screaming “Where did my life go?” Try not to take it personally, we were busy saving our child and couldn’t see you. We would do it the same way if we had it to do over again. Love us enough to gather up what is left of us, gently pour us a cup of tea and guide us home. Even warriors need to rest.