There is a part of me — OK, a large part of me — that wishes I could still live a life with the barest of responsibility. I miss that kid-like freedom that means with every doctor’s appointment, I don’t have to talk. My mom does everything and speaks my truth for me while I get to sit there and read my latest book, daydreaming of what restaurant we can go to after the appointment.
I miss that lack of stress beyond basic comprehension. It is the singular thing I most want in life.
But it will never happen. Those days have passed. I am now an “adult.” I now have to be the one responsible for my body and what is happening. I am the one that has to take ownership of all the pain that is coursing through my veins. And I am the one who has to find a way to fix it — or at least make it manageable enough to exist with any hope of happiness.
These past two years I have been working to speak out about my pain. I have especially been focused on being open with my family and doctors about the misery that is my daily life and the depression/suicidal thoughts that come from this pain.
My natural tendency is to be in denial and try to just escape the dark clouds my life of constant pain brings. And that works — to some extent.
The breaking point that shattered my denial and belief that I could still be “normal” was when I had no other choice but to file for disability.
I am at a point in my pain where not only can I barely make it to work once a month with a 10-minute limit, but I can’t even brush my teeth daily without lots of tears and even more pain. Daily living is reduced to the extremely bare minimum, and my family can always count on me to be in my bed trying to sleep for 75 percent of the day. Some days I am only awake for three hours combined, waking just to go to the bathroom and maybe eat a little something, if my hands aren’t too swollen and aching. And then back to sleep I go.
The process of filing for disability has been dehumanizing and the extensive paperwork is even more disquieting. It is so in-depth, you even have to discuss how hard it is to brush your hair and tie your shoes, and how drastically it affects your relationships. Trust me, it affects mine 150 percent because I have been dealing with pain for so long.
I have accepted who I am with my pain, who I have become with my health, but the biggest acceptance of all has been accepting that my life is not even slightly being controlled by me. Sure, I go to my many appointments, and set them up and plan what to add to my grocery list or what frozen dinner to heat up and eat before bed, but I choose nothing of substance. I can’t even choose how I will feel in the next few minutes. My pain could sharpen so fiercely that the tears I can usually keep at bay will flood out of me as if my life depended on it. Or, perhaps with a more optimistic view, it could snow outside and my pain would recede from a 10/10 to a 6/10 until the last snowflake falls and my pain swarms me again.
I have absolutely no control. Looking back, I have been in pain my whole life. As a baby, I cried constantly because I was struggling to learn how to walk with deformed and twisted bones that would be undiscovered until the tender age of 13. I experienced “growing pains” that kept me up every night even as a 6, 7, 8-year-old. I woke sobbing and screaming for relief from the scorching pain in my legs in the middle of the night, waking my sister and my parents who understood even less than I.
But now we know. And I hold tight to that. In 20 years I desperately wish a pain medicine will be in my system giving me full freedom to be myself for the first time in my life. My hope, so pure and fragile, keeps me moving and walking into each new doctor’s appointment.
That is what I cling to as I wake up each new day with my first thought of consciousness being to control the pain that scars and destroys my body and psyche. The hope that something good is coming gives me courage to fight for what I want and to not hold back when explaining how I feel to a doctor who is looking at me like I am “crazy.”
Now that I have accepted who I am and what my body has become, I can battle it out as I try to carve a life for myself beyond the pain. And in this case, the best way to do that is to go for a disability ruling with all that I have.
Responsibility may be a very daunting thing when your health rests on your shoulders, but it is also the greatest tool when you are working to build a life for yourself that may not be pain-free, but can still be filled with joy. As Alice Walker once said, “The most common way people give up their power is by thinking they don’t have any.”
I know actions aren’t the only thing that can change someone’s life. Words can too. And with disability soon to be an official label for me, I refuse to give up that power. You never know when a simple phrase of encouragement could be exactly what someone needs.
All we can do is use what we have been given. And, sometimes, being exactly who we already are is enough.