This Brutiful Life

In my Anything Is Possible post from October 2024, I discussed the importance of being open to suggestions, recommendations, and constructive feedback, but only from people who are sitting in the trenches with us — my medical team, our mental health provider, and our inner circle of trusted truth tellers who are active participants in our daily life. And, this belief has been reaffirmed time and time again on this health journey. I frequently ask for feedback and assistance from the people who truly know me and have a deep understanding of my lived experience, and I frequently disregard unsolicited feedback and advice from the people who don’t.

I recently decided that my main doctor now knows both me and the details of my lived experience well enough for me to ask for her perspective on my health journey, and this week was a great time to inquire since the last two weeks have been extra difficult for both my husband and me. At the end of our appointment with her on Tuesday, I told her that I know what I see from my perspective, but I wanted feedback from her about my health journey. I did not offer much of an explanation for my inquiry, because I didn’t want to influence her response. This is what she said:

1) I am one of the most resilient patients she has had in her entire career. Her career has mostly involved helping people who have complex cases, and I am near the very top of her list in the area of resilience.

According to her, my mental fortitude is off the charts. Apparently, bending without breaking in the mental health realm is highly unusual for someone in my situation.

2) She is impressed by the work I have done on nervous system regulation. She thinks that my ability to regulate my nervous system far exceeds most people’s ability. Even though I still deal with autonomic dysfunction (dysautonomia) at times due to my immune system constantly being in fight mode from all of the physical stressors in my body (pathogens, toxins, etc.), the nervous system work I have done for emotional and psychological health over the last 20+ years has given my body the best chance for success.

3) She is grateful for my natural ability to notice and recall patterns in my symptoms. Most of her patients don’t have the knowledge, skills, and/or ability to organize the data into patterns, store those patterns in their brain, and then recall those patterns as needed. The fact that my brain does this naturally without much thought is unusual. She says that this is a huge asset, because it helps her determine root causes and/or next steps.

4) She is impressed by my inner compass. She can tell I have an internal knowing that I trust. For example, she says that I know when I have reached the end of the road with a doctor/specific path and that a change is needed. And, not only do I know it, but I also actually make the change, and that is *not* something that she regularly sees in her line of work.

(credit: unknown)

Regardless of the situation, I trust myself to make the best decision I can given the information available to me at the time.

5) My outlook on life and the energy I exude are rare. I have a firm grasp on the difference between what I can and can’t control, and I only focus on the things I can control. The fact that I seek out joy and do what I can to create the best life possible regardless of my circumstances is unique for someone in my situation.

6) She thinks that I will be able to help a lot of people once I get to the other side of this. I told her that I have heard this countless times from medical practitioners, mental health professionals, certain family members, and many of my friends. I have also been told at least 10 times that I should write a book. I explained that I was originally thinking about writing a book when I was feeling better and knew more, but then one of my previous doctors (and a few other people) encouraged me to use my current knowledge and hard-earned wisdom to help others now.