Every Passover, I spend the holiday dinner, or seder, with friends. We talk about the Jews’ Exodus from Egypt, and how that story applies to today. This year, one of the topics we discussed was, “How do you feel broken right now?” It was supposed to be a reflection on current affairs. That is not how I took the question. My initial reaction was, what do you mean right now? Since that first major illness, I have always felt broken and, at least physically, I was. Sometimes emotionally, too. In fact, when the little kids in my life started asking about my insulin pump, and I had to figure out ho ..read more

When I was in 4th grade, my mom made the mistake of letting me brush my own very thick hair. The problem was, it hurt, so I only brushed the top. It looked fine, but the bottom layer developed large knots right at the base of my skull. They couldn’t be untangled, so they had to be cut out. It was the first time my hair had been shorter than my waist. I cried for two weeks. In some irrational part of my mind, I am afraid that’s what will happen if my lenses don’t grow back. Which, of course, they won’t. I will have synthetic ones. No more cataracts, but no more lens flexibility, either. I wrot ..read more

With any medical procedure, there are a ton of logistical details that come with it, along with whatever emotional burden you are already carrying. Routine outpatient procedures are no different. Making sure you check all the boxes so you don’t inadvertently screw everything up is a chore and a half. (This is different from intentionally screwing everything up. You have no idea how difficult it has been to not self-sabotage, given my talent for it and my near two decades of delaying tactics.) In this case, it’s not a lot of things. But it’s enough that I can’t procrastinate as I usually do. Ot ..read more

Two weeks to go before I have the first of two surgeries I’ve been putting off for nearly 20 years. My logical self knows that this is a very common, non-risky surgery, and that I will be happy with the results. Reading and driving will get exponentially easier. I get my nightlife back! Yay! But try telling that to my emotional self. That piece of me that seems to be in a perpetual state of glorious messiness. I tend to psych myself out about even the smallest things when I don’t feel prepared. (See: a cortisone shot I really didn’t want to have that ended up being a molehill and not a mountai ..read more

For those of us who enjoy the opportunity to keep learning long past our school days, chronic conditions offer a unique opportunity, an opportunity we have no choice but to take, whether we want to or not. There is no such thing as knowing everything there is to know about your conditions because, first, no two patient conditions are the same, and second, they keep changing based on things like age and lifestyle. Now, I always knew that water was good for kidney disease (d’uh) and diabetes (there was an incident when I was 20). I’ve also experienced how it helps with hypertension, gastropares ..read more

By intimacy, I mean the kind you have with family and close friends. They are a patient’s support system, sometimes as much or more than a significant other. My childhood as a patient did me no favors when it comes to being comfortable with letting other people really see me. All of those physical challenges came with mental hits, and I hid everything because head down and focused on survival was the only way to, well, survive. Being judged or hurt or rejected – which did happen – had to take a back seat, so I spared no time to deal with them. By the time my mom died when I was 24, I was close ..read more

If you know my story at all, you have probably heard that I have cataracts. They are a result of the high doses of steroids I had to take to treat and recover from meningitis when I was six. They were diagnosed ten years later by my ophthalmologist, who was a family friend. He actually didn’t tell me. I had to hear it from my godmother. Again, if you know me, you know how angry I was even then. But that’s a different story. Most people who have cataracts have surgery fairly quickly to replace the affected lenses. My dad had surgery years ago, even though he was diagnosed a lot more recently, b ..read more

In my time as a patient advocate, I have come to realize that a lack of trust between parties – clinicians, hospitals, insurance companies, patients, etc. – is the root of a majority of the problems and roadblocks within the system that we currently have no choice but to deal with. On the patient side, that stems from the fact that, based on their policies, it’s hard for us to believe that our well-being is a priority for the rest of the stakeholders. Case in point: I have a friend. She recently had a beautiful, healthy baby girl – such a little blessing. My friend’s first baby was fairly dram ..read more

Judy was one of the ones I lost last year. More than a friend, she was like an aunt or a surrogate parent.  I spent weeks at her family’s house in the summers when both my mother and I needed a break from each other. Her husband was my dad’s best friend, and her boys are like the older brothers I never had. She was loving, generous to a fault, down-to-earth, and practical. So, she knew. That day her oxygen dropped to catastrophic levels when the BiPAP was obscured for just a moment or two, she knew that there was no coming back. No going home, no moving it even to sip a Pepsi. It was such ..read more

I’ll just say it. 2023 was an emotional cluster%@!#. I have always been able to handle whatever life has thrown at me with healthy adaptive and grieving processes. But death has always been the hardest trigger for me, ever since I was 10 and I lost both a grandparent and a close family friend, who was supposed to be ok after a heart attack, but never made it out of the hospital. My mom’s death in 2001 just amplified the trauma of those first couple and all the ones that happened between. I have my coping mechanisms, but last year they weren’t enough. I started 2023 with an open emotional wound ..read more