To Justine

Perhaps you cannot truly know what a gift trusting and sticking it out past the harder parts is to the heart of a mother of a child with the kind of needs Tony has- what it means to and for him. I know my understanding of love changed entirely the day our sweet Hannah was placed in my arms, and even that definition was hammered, beaten upon, and expanded even further as Tony’s extensive needs began to reshape so many things about our family.

Perhaps nothing I say may give those feelings a just description, but they are still there and infused with deep gratitude. I really appreciate that you show up each week after those first few sessions, however we’re doing therapy, with a positive attitude about Tony’s ability to progress. Thank you for being patient with our son, for listening to my input, and for being so respectful of our protective equipment requirements for in-home providers. And thank you for trusting that our home would be as safe a place as any to work during this pandemic.

To Dr. L & His Fabulous Staff

I have loved your office ever since your former business partner was my dentist- you guys all know that. Your team has always gone above and beyond to take care of whatever was going wrong with my mouth, but I feel an extra note of appreciation is over due at this point. I know it was not easy right now while you are short a dentist to work me in for extra appointments to check on whatever fungal nastiness was going on with my tongue after the prednisone. Thank you. Thank you for making that time. Thank you for helping me feel cared for and valued during a difficult time.

Some Reading To Consider

What Doesn’t Kill You: A Life with Chronic Illness- Lessons from a Body in Revolt, by Tessa Miller

I purchased this book three months ago, but just finished it yesterday. That is not a slight to the author. Because of my schedule and circumstances, I honestly do much better with YouTube or other things I can listen to while I am driving, washing dishes, etc. I probably should have purchased the audio book, but I didn’t, so here we are, three months later.

I think it is important for some of my readers to know that even without my particular set of circumstances, some of Ms. Miller’s autobiographical musings may be triggering and require some breaks in reading to get through. She has a background with some themes I know that I can personally be triggered by, including abuse and loved ones with addiction. She also writes a bit about a toxic and abusive romantic relationship she was in. All of this is woven in and out of her experiences as a woman diagnosed in her twenty’s with IBD, eventually confirmed to be Crohn’s more specifically.

The next thing I would like to share with each of you about this book as something to keep in mind is a quote from the second half: “Empathy is more than putting yourself in someone else’s shoes; it’s using your power to fight for changes that don’t directly benefit you. It’s more than understanding why another person feels the way they do; it’s learning about the systems (or lack of) that contribute to their emotions and behaviors, then figuring out how you can help.”

I think that the listening to or the reading of different perspectives is important. I know some of you may immediately disagree with her ideological positions and might want to exit the book the first time she criticizes certain things. But I think it is important for each of us to take the time to understand each other and why we believe the way we do, which can only happen if we listen to the fuller story. The polarizing and “othering” tribalistic trajectory of our American communities seem to be only be breaking people down instead of building anything up.

Her writings are framed around her own specific experience with chronic illness, so despite a brief section of encouraging notes towards the end from a few individuals with other conditions, readers with other chronic health challenges won’t necessarily see a story that directly mirrors their own. I think that’s ok, because again, we can not share the burdens of another if we don’t know what those are. She also has the kind of ethereal blond beauty that usually ensures improved outcomes in many areas of our society (including healthcare), something she acknowledges to a point when she notes that things were easier for her as a thin white woman.

Despite those things, I think some of the information and themes are still very useful to anyone with another condition. She has appendices that detail resources for dealing with certain types of problems that can be generalized to anyone navigating the American healthcare system. Many individuals with a chronic illness can certainly relate to what it feels like to have had a negative experience within that healthcare system, but some elements like the need to fight for authorization of certain medically necessary treatments feel almost dehumanizing when you have to go through it and I am glad that she put a spotlight on some of those things.

I think it is valuable reading to keep in mind for those who don’t have a chronic health condition yet either, because many Americans will become permanent fixtures on the chronically ill thrill ride at some point. And even if you are one of the blessed and lucky few who will spring spryly out of bed each day your entire lives without some form of chronic illness, I think it is still important to understand the life experiences of your friends, neighbors, and community members.

One Last Bit of Viewing

I woke up the other morning to find this on our kitchen counter. I had given Hannah permission to use all of my old painting supplies- I don’t really have time anymore and it gives me joy to see someone relishing them. I thought she did a lovely job, she based her painting off of a photograph of Diana Ross that was taken by Harry Langdon. She gave me permission to share it with the family on the blog, so this is what I’m closing with today.