Vulnerability is waiting for the doctor to call with the test results...

So the time has come, y’all. In my last post, I talked about the fear and uncertainty of reopening the can of worms that comes with going back to a specialist to explore a possible diagnosis for my pain. I did this by using a grand metaphor about poop. If you haven’t read it yet, please do. For one thing, this post will make a lot more sense. For another thing, IT’S HILARIOUS. No joke, I feel very smug about my last post. In any case, over the past three or four days, the test results from my immunology report have started trickling in. As each result became available, I quickly logged into my online patient portal to look. I am obviously not a doctor and barely understand the tests that were ordered, but each test comes with the standard range for results. And after getting as many blood tests as I’ve had, I know enough (combined with google research) to make some conjectures.

As results came in, each showed numbers well within the average range, which in turn, produced more and more fear and anxiety that this search, like so many others, would come back fruitless.

And so today, just about 30 minutes ago (as I am writing), I got the remaining test results and the follow up message from the doctor. I was having a pretty solid day, y’all. I accomplished several major tasks at work. My pain isn’t too bad. I listened to good music this morning to help pump me up. I’ve been in a good space.

Let me tell you something, when I saw the email from MUSC letting me know that I had a new message from the doctor...gurl...0 to 100 REAL FUCKING QUICK. The response from my nervous system would make you think not that an email had just arrived, but rather...say...an earthquake? A UFO? Beyonce? Anything but a tiny little email.

Isn’t it insane how much things can change in an instant? I was admittedly about to send a very suggestive text to a manfriend when I saw the email pop up. I went from giggling about sexting to utter terror in the blink of an eye. Immediately, my heart started pounding as my fight or flight instincts set in and the message was overwhelmingly to FLEE. FLEE THE FUCKING SITUATION. RUN AWAY AS FAR AND AS FAST AS POSSIBLE.

I tried to compose myself. I reminded myself that I said I wasn’t going to do this, that I wasn’t going to act this way, that things would be fine either way. Riiiiiiiiiiight, said my anxiety. Suuuuuuure, said my depression. JK, you’re gonna panic, said my nervous system.

I tried for a few minutes to calm myself when I realized it just wasn’t going to happen. There would be no achieving a peaceful “it is what it is” nirvana in the moment. I just had to click and read:

And with that, my heart moved from my throat to the pit of my stomach. I fought back tears. Here I was, in a familiar space, facing a familiar outcome, hoping to have moved past the emotions of the past, only to find the wound of disappointment and loss of hope still very much present. Herein presents the poop when you thought you just had to pee, the resurfacing of old emotional trauma.

But I promised myself I wouldn’t do this. I wouldn’t act/react this way. Things are different now. I am different now. My old trauma has left marks and wounds that are still healing, but it has also taught me a lot about myself, and I have used it as fuel for progress.

I am still working on all this in my head and to be quite honest, I’m still fighting back tears at moments. These tears come because I am tired. Tired of fighting the war that my own body seems to be waging against itself and me.

Though I am tired, though I am sad, I am also stronger than I used to be. Because of this strength, I have been able to come to some conclusions:

1. I own that I feel disappointed. I’m not going to deny that. I’m not going to try and pretend it’s not true. I’m not going to ignore that feeling. I have learned by now that to push away your negative emotions means you push away the positive as well. Numbing pain with alcohol, drugs, or my favorite: staying really busy is a defense that ultimately wounds us. When we shut off the bad, we eventually shut off the good too. I am disappointed in this outcome because I wanted an answer. I want there to be a clinical reason why I am in this much pain and have been for so long. I want a diagnosis with a plan of treatment that I can research in a journal. I am disappointed that I didn’t get that, and I own that disappointment.

2. I understand and admit that it’s ok to want my pain to stop. Who wants to be in pain all the time? No one! Wanting something to be clinically wrong with you (in this case hoping for an autoimmune disorder) feels crazy and also somewhat disrespectful and minimizing to the people actually living with such disorders, which in turn can produce a lot of guilt. I understand that it is ok for me to want reasons for my pain. I understand and admit that it is ok to not want to be in pain every day and it is ok for me to be disappointed that I don’t have an answer.

3. I accept the uncertainty of my condition and admit that this uncertainty and lack of control over my body scares me. I hate not being in control. I fucking HATE it. My anxiety functions in such a way that I hyperfocus on all the possible outcomes of the situations in my life, so that I can feel in control of the outcome, so I can feel prepared. I hate not knowing. I hate not being able to prepare accordingly. If I am truly going to live my life with my pain, I have to accept that uncertainty and lack of control into my life and adapt. To do otherwise is exhausting.

4. I believe that “things will get better” meaning that my pain level will decrease over time and/or I will learn to manage my condition better both physically and mentally. I have to believe this.

5. Just because my pain doesn’t have a name, doesn’t mean it isn’t real. Just because my pain doesn’t have a name doesn’t mean it will never get better. Just because my pain doesn’t have a name, doesn’t mean I am not validated in my hurting.

6. Naming is a function of the need to understand and control something. I can understand my body and my pain without naming it. I can heal my body and my pain without naming it. I can validate myself and my own experiences.

7. It is something to be celebrated that I have a healthy immune system – this means I do not have an incurable autoimmune disorder. This means the damage my pain has done to my body has not been as great or as deep as I once thought it was.

And I’ll end with a final thought. I have often, in the past four years, thought about what my life was and what my body used to be able to do. I think about what my life would be like if I didn’t have my pain. In that imagined world, everything is better. In my romanticized vision of the past and my fictional present, there is no pain, physically or mentally. I know this is fiction. And so I wonder:

What if instead of mourning the loss of my old life and body, I celebrated to opportunity to have had them? What if I stopped viewing that life/body as better or more valuable than what I have now?

Now I’m going to put on eyeliner and glitter make-up and watch a movie to make me happy.

Peace and love,

Adam