This Brutiful Life

The last two weeks on this health journey have been extra difficult for both my husband and me. 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 my 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. At the end of our appointment on Wednesday, 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, mental health stability 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 from an emotional and psychological standpoint far exceeds most people’s ability. 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.), but she believes that the work I have done over the last 20+ years from an emotional and psychological standpoint — the nervous system work within my control — has given my body the best chance for success in the area of physical health.

3) She is grateful for my ability to notice and recall patterns in my symptoms. Most of her patients don’t have the knowledge and/or skill set to organize the data into patterns and to store those patterns until they are needed, and 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)

Even though there are times when my body is ahead of current medical knowledge and understanding, I trust myself to make the next right decision 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.