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.

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.

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

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.

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.

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 closed tighter than my hermetically sealed apartment windows.

What do I mean by that?

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, but I have been stubborn. Shocker, right?

I have a lot of insurance policies – homeowner, car, very valuable property for my mom’s jewelry, and of course, health insurance.  And then there’s the long-term care policy (LTC). This year, only a month into 2024, there have been so many SNAFUs that I still might lose coverage.

I have all of my insurance on autopay through my bank. I thought it would make it easier and require less attention than paying every month. That’s not really true.

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 drama-free but, when we caught up recently, she told me that this time around was anything but. One particular episode stood out to me.

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.