This Brutiful Life

“The only thing I know for sure is that I just keep trying.”

These are the exact words that I said to our therapist last week when we were discussing the amount of uncertainty in my life every single day, and the toll that it takes. For 20+ years, I haven’t had a clear path to follow in terms of my health journey. I haven’t had a diagnosis that provides a patient with a well-established path forward. I have had a bunch of possible paths, dead ends, U-turns, etc., but I have never had a clear path forward. I am relatively used to this part of my life, but there are still days when I step back for a second and can’t believe how much uncertainty surrounds me. Having to live alongside this much uncertainty would be crazy-making for most people, but somehow, I am still sane.

About a month ago, our therapist recommended that I read the Los Angeles Times bestselling book, In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope, by Dr. Rana Awdish. The book is written by a critical care doctor who had a near-death medical crisis herself, and it gives the reader the unique perspective of a medically-trained critical care patient. Our therapist said that the author’s words frequently reminded her of things I have said along the way, and she thought it would help me feel less alone. [Side Note: Our therapist didn’t say that she read this book to help her better support us on our journey, but I have a feeling that it was at least part of the reason. She specializes in chronic illness and trauma, but there are not many situations like ours. How lucky are we to have a mental health practitioner who spends time trying to better understand our situation in order to provide us with the best care possible!] Needless to say, I read the book within 48 hours. The details of Dr. Awdish’s near-death medical crisis are not similar to ours, but the emotions, feelings, and circumstances surrounding it are similar. As a result, I could relate to much of what was written, and it did help me feel less alone. For example, here is one thing she learned about medical practitioners (including herself) that I have also found to be true in my experience with medical practitioners:

“I knew we [medical practitioners] valued the cure, the goal, the win. We were far less comfortable in the gray, shadowed area of suffering. We excelled at providing complex, precision medicine in a way that appeared almost effortless, yet at times struggled clumsily when it came to empathy.”

And, here is an example of one thing she realized from a patient perspective that is similar to what has come out of my mouth at various times:

“When organs and limbs function without fail, we can indulge notions of self-reliance and agency. We believe ourselves to be the narrators of our own lives. When we are sick, we are humbled by our dependency on others, the loss of control, the uncertainty of the ending.”

I have always been a very independent person, so learning to become more interdependent has been an important part of this journey for me. And, learning to let go of the outcome in order to live in the moment is a daily practice. Acceptance is key.

However, just because I am good at accepting my current reality doesn’t mean that I am never impacted by all of the uncertainty. I experience a wide range of emotions and feelings. After our therapy session last week, I spent some time explaining to my husband exactly what it feels like to be uncertain about a majority of my decisions on this health journey. He is the closest person who could understand how it feels, and it is still impossible for him to understand it completely since he is not me. As I was describing it in more detail and going through some examples of the decisions I have to make every day, he got an even better sense of the weight of it all. He understands the generalities of the decisions that are made since we are a team, but the person who is actually in the situation is the only person who can fully understand the mental/cognitive load of those decisions.

In response, he held space for my feelings and then told me about his recent forum search. My husband and I don’t spend a lot of time searching for answers online, because there is quite a bit of misinformation online concerning health and wellness. However, every once in a long while, my husband will look at some online health forums where other patients are searching for answers and posting about their experiences to make sure we aren’t missing any new information that needs to be explored with my medical team. He visited one of those forums about a month ago and looked up one of my unabating issues. My husband said that nothing has changed since the last time he visited that forum about a year ago. The people there are desperate for answers and don’t have half the knowledge that we have. Many of them have lost their jobs, their homes, their romantic relationships, and they are in the middle of mental health crises due to how debilitating their situations are for them. It makes me sad to hear that there are so many people who are suffering, but it helps to know that we aren’t alone in the uncertainty. This is a complicated situation for most people who find themselves in it, and this was a good reminder. My husband reiterated that the way I walk through this journey is on another level compared to many of the people who post in the forum. I am able to stay the course while simultaneously being open to new information that comes my way, and the forums reminded him that most people aren’t able to do that. As he stated previously (Driving Down the Highway), my healthy persistence is admirable and an inspiration to all who know me.