The health journey I have been on for the last 20+ years has required me to trust my gut and follow the path that is right for me. And, right now is no different. I have had a few people ask me recently if I am feeling better than I did 1 year ago, and the answer to this question is not an easy one. There are days when I feel about 5% better, and then there are days when I feel the same or worse than I did last year. However, I know that I won’t start feeling better until we are further along on the tentative treatment plan. As my doctor has stated, if I am carrying 800 lbs. on my shoulders, and I remove 20 lbs., am I going to notice? No. I will still be carrying 780 lbs.
The most difficult part is explaining this to others. I don’t know very many people who would pay the kind of money we are paying for my medical care and continue on this path with these kinds of results. (These people probably have a lot of different paths from which to choose which is a privilege I don’t have.) Most people can’t fathom treatment taking this long or continuing the treatment plan if there have been little to no positive physical results. I understand the questions and the concerns. I would probably feel the same way if I hadn’t been dealing with this for 20+ years and know what I know about my body and my specific situation. The fact of the matter is that there have been positive results, just not the positive results people who are not in my situation would understand.
I am very aware that we could pay all of the money we are paying, get to the end of the tentative treatment plan, and I could still die. We could also decide at any point that this is no longer the right path and choose another path. (I have no idea at this point what the next path would be, but I have to believe that it would present itself at the right time.) The hard truth is that I won’t really know if this is the right path for my body and my specific chronic illness situation until near the end of the tentative treatment plan. And, by then, I know that it could be too late.
The way that I have learned to keep moving forward over the last 20+ years is to become more comfortable with uncertainty. I don’t know anyone who really loves uncertainty, and that includes me. However, if I want to keep living, I don’t have a choice. Each day, I have to try to listen to my gut and the Universe and determine if I still believe that this is the right path for me. I don’t have a road map to follow on this journey — I have to blaze my own trail. I have to trust myself and ignore any outside noise from people who have not traveled this journey. I have to make the choice each day to get quiet and listen for the truth inside of me. I also frequently ask the Universe to continue to show me the path for optimal healing. This is all I can really do. And, if I ever believe that I need to make a change and choose a different path, then I will. I trust myself. (Side Note: I am proud of the fact that I haven’t let all of the Medical Gaslighting I have previously experienced prevent me from remembering who I am at my core and trusting myself.)
Last week, I was having a physically challenging day along with experiencing the very normal and healthy emotions and feelings associated with a physically challenging day. It was a day with a lot of questions surrounding my physical symptoms and not a lot of answers. I used all of my tools for support that day (husband, friends, walking, breathing exercises, etc.), and I was still struggling. Then, I opened my social media, and this image showed up on my feed:
(credit: unknown)
I understand algorithms. I also understand that this could have been a coincidence. However, I believe that it was synchronicity. My husband and I are the only people who know the exact conversation we had with each other earlier that morning. And, when I sent the image to him, his immediate response was, “Seems like a pretty direct message, huh?”
As I have written previously, I do not follow a specific faith tradition (see The In-Between). However, I have had enough “interesting” things happen to me in the last few years that I have been inspired to dig deeper into my spiritual beliefs. Just like the rest of you, I don’t have any certainty on this topic, but I am okay with that. And, I know that the more comfortable I am with uncertainty in all areas of my life, the closer I am to being my best self.
Brutal. So many unknowns. So much uncertainty. Blazing my own trail. Answering questions that have no easy answer.
Beautiful. Blazing my own trail. Having tools to use for support in my daily life. My supportive people. Trusting myself and the Universe. Learning to be more comfortable with uncertainty.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 