Chronic conditions are indeed chronic and thus it makes sense that I ebb and flow in both my interest and motivation to heal further.  I have largely given up believing a cure is possible and while that may seem like a defeatist attitude I think it is just being realistic. So if my end goal is different- not completely healed and cured - how healed is enough? Is being able to maintain and live my life enough? Or does my rare disease warrior self require me to always fight?

I remember sitting next to my mom  in her ICU hospital bed on a Thursday night in late May almost 8 years ago not knowing that would be two nights before she died, something neither of us were expecting.  As we sat in the weird hospital world where time doesn't exist and days and nights are only defined by nursing shift changes, we were trying to figure out what happens next, what care she would need at home as she fully recovered and my cell phone dinged.   A text came through from my dear friend Kelly.

I start most days by reading the "story of the day" from poet Kai Skye (formerly Brian Andreas) that arrives in my inbox each morning around 5:00 am.  When my Mom was alive we would send the day's story to each other if we felt it had meaning or reminded us of someone or something.  Since her passing I have similarly shared them with friends and family when they "speak" to me but mostly I rely on them to center me each morning by reminding me of something I am probably forgetting about myself or the world. 

I was on a conference call 10 years ago and as someone asked me a question I suddenly felt my water break.  Instead of answering the question I said - "I have to go. I will explain later" and hung up.  I was working from home at the time thanks to the temporary bed rest my doctor had put me on due to pre-term labor which clearly had not been stopped.  

As our son was getting ready to walk out the door to his first day of fourth grade this week he paused and said, "wait, do I need a mask?" "Nope!" I said as he smiled widely. For the first time since March of his Kindergarten year he was walking into school without one.

It finally happened. I could feel it coming soon. I thought it would be the last week in August so my timing was off by two weeks. But when my throat started hurting and I had chills overnight last Sunday I knew the test was going to be positive. And it was. My greatest fear in the last 3.5 years had happened - I tested positive for Covid.

The last two weeks have been only the best kind of whirlwind, with a visit from my brother and sister in-law and then a visit the next weekend from my grandma, final performances and last days of schools wrapping up . Our out of town guests made these moments even more memorable and special and I have felt endless gratitude for this time together.

“You are OK.” I read the text over and over from my best friend from college. It was 1:00 am eastern time and 35 minutes earlier I woke up choking and gasping for air. “I am OK” I said to myself as my body was shaking.

Time is a constant subject in our home as our son is always worried about it running out. Sunday afternoons are particularly hard as he gets stressed as the weekend hours dwindle away. Over and over we will remind him that there is always tomorrow - everything doesn’t always have to happen in one day. The end of the weekend is really just the start of a new week. But what if there isn’t tomorrow?

I have remained motivated to push myself to keep moving on healing and that means finally facing my fears and adding food. I know it is critical to my moving forward as my current few foods are not sufficient to only eat for the rest of my life.

We were twenty minutes from landing in Los Angeles when tears began to well up in my eyes as the reality of what I had just done hit me. I had flown almost six hours across the country, a feat I was sure I would never do again in this lifetime.

Is it weird that getting myself to walk into an OR for major surgery in many ways felt arguably less scary then how I feel about boarding a 6 hour plane ride to unknown environments? I never hesitate in taking the medical risks I need to but it is still a work in progress to similarly not hesitate on taking a risk to go on a new adventure.

I have of course processed my changed life from my rare diseases many times this last decade as I have grieved my healthier self and yet there was something about reading 30-40 years that struck me as an endless amount of time.

It shouldn’t still surprise me or upset me when these encounters happen and yet it does. How can a medical practitioner so easily dismiss the chronic health issues I live with? Why will they never try to understand me better to treat me or ensure my safety?

I am never one to wish time away but right now I find myself struggling with that feeling right now. These months certainly bring a level of stress that I do not have in other times of the year and it hard not to long for Spring.

I can still vividly remember the bigger reactions I had as a kid, from that very first time in the car when my Mom made me chew the Benadryl pill as we rushed to the ER to the time I bit into a pizza with jalapeño peppers or reacted at a family dinner. I remember the panic I felt inside - the lack of control that I felt in my body. It wasn’t a fear of actually dying but the unknown of what would happen next that scared me most. I also remember the calmness my Mom had in all of these moments.

I remember when my doctor said to me that she needed to see me in person once a year and my heart skipped a beat. We started working together during COVID when tele-health allowed us to connect virtually despite her being located in Chicago. My instant reaction to any travel is always negative after years of reactions and now there was a pandemic to contend with. I know if she told me this a year ago, it would have not even been a possibility given the lack of stability in my body. Thankfully this year I knew I could take a deep breath and figure out how to get to Chicago.

This summer has felt in many ways victorious with family visits, our beach vacation not ending in sickness, happy days at camp for our son and celebrating turning 40. All reminders of how important it is to have shared moments of joy with our family and friends and how truly healing these times are.

Our summer days are here and they always bring back feelings of nostalgia from my own childhood. Remembering our after dinner family bike rides and regular evening trips to see Gus at the ice cream store- getting to sample each flavor as I faced my hardest decision of the day on what would fill my cone. Or the excitement of seeing the first fireflies and the magic of catching them each night.

I think it’s hard for me to say how I am doing because in my mind I am still trying to feel better and it is hard to balance feeling that with also saying I am doing well. Because I want to believe I can be even better than I am now.