Throughout high school I do what I know how to do best: push – and then push some more. Pushing becomes my way of life, my normal.

And the reality is that this serves me well. I make it back. I exceed everyone’s expectations. I become who I think I would have been had I not gotten sick.

It’s hard to undo words. Mr. Dalson’s words still make me shudder 30-plus years later. 

I look back at this moment and think of all the words that I could have said in response to Mr. Dalson instead of turning on my heel and walking away.

There are many people in my life that I emulate and whose words I value. My husband, for one.

On the other hand, there are two people (Dr. Snow – and Dr. Dalson, whom you will meet in this excerpt) in my life who have served as non-examples. Their words were so damning and hurtful that I, all these years later, will be reminded of them on a regular basis as I’m going about my day…

In this excerpt, you will learn that Dr. Snow recants his diagnosis of Hallervorden-Spatz Disease based on the results of my blood test. All of us were euphoric! Yet, after the excitement of this news wears off, we recognized that I still had a long way to go toward recovery.

A big challenge for me is that I was still living in fear even if death was no longer imminent…

It’s one thing to read “Becoming” by Michelle Obama or “Bossypants” by Tina Fey. We’re naturally interested in learning more about these people. But what about those of us who aren’t national figures?

For those of us non-public figures, we especially need to draw upon universal emotions when we’re unraveling our story…

Last week I revealed Dr. Garcia’s alternative diagnosis, platinum poisoning, most likely from my braces. This alternative diagnosis was made 30 years ago, and I’m still left wrapping my head around it.

As I emphasized last week and will emphasize here again, the reason why I was susceptible to platinum poisoning – from my braces – is that I have a defective enzyme that prevents me from detoxifying heavy metals and other contaminants.

I recently did a Google search for obscure allergies. One of the more unique allergic reactions you can have is to the metal in your wedding ring. If you develop dermatitis on the skin underneath your wedding band, chances are high that you could be allergic to either the nickel or platinum in the ring. 

A friend of mine recently sent me an article from the NYT titled “How I Became Extremely Open-Minded” by Ross Douthat. In this article, Douthat describes his journey with Lyme disease and how he became more open to experimental treatment options the longer he dealt with chronic pain. The Rife machine was the strangest option Douthat came across when he was searching for alternative ways to treat Lyme disease…

As you can guess from my previous post, Dr. Pierce shared his outlook on my prospects with my parents, and he did not paint a pretty picture. In his expert opinion, there was no hope of my ever recovering. There was no hope of my ever approximating anything close to “normal.” There literally was no hope. From his perspective.

As the subtitle of my blog states, my goal is to have my writing be inspirational for others. To achieve this, I believe that it’s important to demonstrate how there are universal emotions that connect us. While many of our life experiences may be different, our emotional experiences, including some of the manifestations that result from these feelings, may be similar.

As I reflect on the passage I’m posting today, I’m reminded of a white-water rafting trip we went on in Colorado this past summer.

The four of us were paired up in the same raft with a family who consisted of two grandparents, two parents, and a two-year-old boy.

I was surprised to see a two-year-old on the trip. I don’t know of too many two-year-olds who like to sit still for a couple of hours…

The other week I had a two-hour coffee with my friend Perris Deppa. It was wonderful to have the opportunity to connect with her without any interruptions.  Perris recently published a children’s book, “Winter, You Wonder.” I was fascinated to learn that Perris wrote a second narrative exclusively for the illustrator, Raquel Martin. This ensured that Martin had enough detail such that she could make sure Perris’s vision of her book came to life on the page. 

In 2015, my friend Courtney Baechler’s daughter Sophia died unexpectedly at the age of 7. After a loss such as this, it’s hard to imagine how you’ll continue on. How do you not live in constant fear that another tragedy is about to happen? My friend said that, had she chosen to live in fear, her will to live would have ended the day that her daughter died. I admire Courtney for the clarity of her vision and the fortitude it takes to live this way.

My friend Ann recently shared an excerpt from the website holocaustcenter.org. The excerpt is about Emeric Grosinger, who was deported to Auschwitz as a 12-year-old.

Emeric mentions that he really didn’t start talking about his experience in the detention camp until he, himself, had a boy who turned the same age that he was when he was deported. When his son still was saying, “…daddy this, daddy that, like a little kid” at the age of 12, the gravity of what he had endured and how young he was at the time hit him on a new level.

Our book club recently read a book that referenced AIDS and how in the early ‘80s the disease was initially referred to as “gay cancer.” The book also mentioned how some health practitioners refused to treat patients with this disease. Similar to the early months when COVID-19 was first detected, there was uncertainty as to how AIDS was transmitted when the disease emerged…

I recently attended Hennepin County Public Library’s Pen Pals event where Anthony Doerr talked about his newest release, “Cloud Cuckoo Land.”

The research that went into constructing this book is mind-blowing. I learned about ancient Greek texts, space travel, and climate change, all at breakneck speed. Gosh, can he talk fast!…

Included in the excerpt below is one of the more traumatic memories I have from the time that I was sick. At this appointment, I was treated like a specimen. Something to be scrutinized. Something sub-human.

Dr. Snow, my neurologist, invited his cadre of interns to this particular appointment. It was a complete surprise…

I’m amazed at how well our 8-year-old daughter Kate can read — and how much she delights in reading. It’s not unusual for her to squeeze in just…one…more…page…before she falls asleep at night. I love how decoding is so easy for her and she’s able to read just for meaning and pleasure. I remember what this was like when I was younger, when reading was “easy” and the story magically unfolded in my head.

I also remember when the words started to disintegrate right before my eyes.

I am reminded each and every day how fortunate I am that I recovered from my childhood illness. For instance, last week when I took one of Ally Love’s Peloton classes and she said, “The ability to move is a gift,” I smiled and pedaled harder. I know this truth better than many people.

I wake up every day thankful for the ability to move my body. It indeed is a gift. The ability to move my body was taken away from me when I was younger – and the ability to move again took tenacity, fortitude, and hope, especially in the face of specialist after specialist saying I would never be “normal” again.

After making my first post, I didn’t sleep well at all. It’s not for lack of encouragement. I’m humbled by the number of friends who have applauded my effort and courage. I am full of gratitude.

Why the unease then? I’ve kept this story under lock and key for so long. Although I know as an adult that I didn’t cause my illness, I held onto the belief that it was somehow my fault for longer than I care to admit. I was full of shame for not being stronger. For not preventing it from happening.