I have multiple chronic illnesses. Cures are not expected in my lifetime. I still have hope that my doctors and I can find ways to better manage the symptoms. Nevertheless, we still expect that I will always have to make accommodations to minimize the impact of these diseases on my daily life. Even on a good day when my symptoms are not apparent I make a thousand tiny adjustments to insure that good day continues for one more day. I make choices and do things that healthy people would never consider. My health cannot afford the effects of a carefree life. Spontaneity is a risk I simply cannot take.
I’ve had to make adjustments in my behavior and my expectations. Frankly, I’m still adjusting. My therapist tells me I am grieving and need to allow the process to take its course. If I were the therapist, I’d say the same thing. Thanks to her “homework”, I am finally able to write again. It doesn’t come as naturally as I remember, but maybe I’m just kidding myself. When I think about the past I tend to focus those brief moments in time when I was symptom-free. They seem longer in my memory. The truth is that those were pinnacle moments in a life that was otherwise dominated by pain or attempts to avoid pain.
You see, disability didn’t happen suddenly. It has been a slow, creeping process. I’ve spent most of my life trying to “beat this” in pursuit of a “normal” life. I have scratched, scrambled, and fought my way through life, trying to pretend that pain was not in control. The reality is that pain has been a constant unwelcome guest in my life for 38 years. I don’t think it’s really been a “guest” for decades. Pain is a part of my family. The sooner I accept that and embrace the gifts it brings, the sooner I will feel “whole”. It’s long past time for me to surrender the fight and stop seeing pain as my enemy.
This is no easy process. We are conditioned by society that pain is something we should try to get rid of. Billions in profits are made each year from the sale of pain relievers. Please don’t misunderstand me. Pain is not an enjoyable experience. If I was given the choice to live without pain, I would certainly take up the offer. But I don’t get a choice. In fact, I get an extra helping of the most insidious kind of pain…the kind for which no cause can be found. All the tests and scans show a “perfectly normal” body. No one can point to anything in my body that explains my pain. No medicine will cure it. No surgery will reverse it. It is incurable.
You may think it sounds like I am giving up. That’s not the case at all. Making peace with pain is not the same thing as surrendering to a life of misery. I don’t intend to stop taking medication or cancel my doctor’s appointments. I don’t plan to intentionally expose myself to triggers I know will set off attacks. But when pain comes knocking at my door, I will invite it in and accept its presence as a reality in my life. Marsha Linehan, creator of Dialectical Behavior Therapy calls this Radical Acceptance. It’s the concept that right here, right now, everything is as it should be. Pain is pain — there is no assessment of it’s morality. I do not view it as either good or bad, welcome or unwelcome. It just is what it is.