Too often we are shamed into ignoring or downplaying our needs and concerns.
Too often the emotional toll it takes is ignored.
Cancelling that eagerly anticipated trip was horrifying. Especially when I had to explain why to my broken hearted little girl. When others were involved it often cost me the relationship.
One memorable trip was to Disneyland with a friend since college and her two children. It had been a long, difficult day filled with waiting in long lines just to experience a few minutes sandwiched into tight, uncomfortable seats. One train ride in particular was old and rickety, throwing us chaotically into each other and the steel doors.
Don’t get me wrong. I love theme parks. Especially when my daughter was young. Her excitement and raw delight was worth every ache I suffered days later. But there’s only so much I can take.
After hours the toll builds and my love wanes when the abuse is overwhelming, no matter my daughter’s joy. Usually I can say enough is enough. Out of pure survival I honor that moment when I know if I stay any longer the consequences will be catastrophic. But we weren’t alone this time. I had three kids and a parent all looking at me eagerly to take, “Just one more ride before we leave.”
How could I say no? How could I explain I was exhausted and in too much pain? It was only one more ride. I told myself, I can mange that. So to Space Mountain we went.
For those of you unfamiliar with Disneyland or Space Mountain, it is an indoor roller coaster that adds darkness to its attraction. But it also requires standing more often than moving, sometimes for over an hour, in an incredibly slow line that traverses a hallway 3 feet wide as you climb up the building to the starting point. It’s a slow torture with no way to sit. I only have so many steps in me per day. Once I reach that maxim, I’m done. Begging, crying, whining, demanding my body listen to the boss and mind my orders is futile. Once expended, the day is over until I’ve taken the proper measures to recover- a hot soak, ice packs, topicals, a comfy bed…rest. Nothing else will work. Its due to neurological claudication. The nerves that generate impulses to the muscles in order to make them react as requested fatigue with overuse and eventually can’t get through at all. It’s like asking a drowning person to hold off on that one last breath they need before succumbing to oxygen deprivation. It can’t be done. Without that good gulp of air, or time to let the nerves and muscles recover, moving forward is impossible.
I’m a physician, I know the facts. But each time I am sure this situation is different. This time I can overcome the physiological consequences I brought on myself and take one more step. I cannot. Stuck in the middle of the building, packed with waiting people, there was no where to go to get out of the way and rest. So I sat down. Shock was the first reaction, then concern, then frustration and finally humiliation I was holding up the line. Hearing “you can’t be that bad”, “Once you’re there you’ll be fine” didn’t change the facts, I could not take one more step. The day was over.
I knew the comments hurled in the moment weren’t said maliciously or meant to shame. They were frustrated and disappointed.
But all I heard was, “Stop being a baby, buck up!” Fifteen minutes later, the facility brought me a wheelchair and escorted all of us to our car.
I live with chronic pain. But when I don’t honor my body, regardless of intent and motivation it will shut me down to survive .Too often it’s hard for others to understand. Especially when you seem fine one minute and on the floor the next. I liken it to a toothache that never ends. Initially it’s tolerable. But as time goes on, its persistence causes the pain to grow in intensity until it’s all you can focus on. For me, when the starving muscles have said enough, the fight is over. That’s our reality. We can’t just ignore life, work, people we love and dwell in the agony. We need to be able to move through it and live with it. That’s why it’s so imperative to nip it in the bud. To keep it from escalating when simple interventions will work.
It takes communication, moving through the shame and honoring who we are. All we are. When we do that we can live with our pain, honor it, and still have a life. I may not be able to walk a theme ark for hours but I can enjoy it in spurts. I can’t ski anymore but I can enjoy a stroll in the snow covered forest. I can’t jog in my neighborhood but I can exercise on my elliptical. And when necessary, I can deal with my own issues of how it “looks” and use a cane or even a wheelchair to extend an incredible day’s fun into the night as well. My ego will survive, as will all the memories I’ll cherish. I still push too far at times. But I’m better at setting boundaries, sharing where I’m at in the moment and stopping when necessary. Living with chronic pain means accepting, adapting, loving ourselves and making sure those in our lives do so as well.
Next week I’ll talk about ways to make this a reality.