Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

One that’s taking up a lot of my headspace lately is the impact of serious illness, especially chronic illness, on mental health.

*Steps onto soapbox.*

I’ve spoken before on how being in a wheelchair when I was just starting school left a lasting imprint on my psyche. But that’s just one of myriad ways that dealing with health issues can mess with your head.

Lately, I have been discovering that I have a few soapboxes. I’m not sure they are hills I would die on, but they are things I feel strongly about.

The one I’ve had for a while is patient-provider communications.

*Steps onto soapbox.*

Even if we had a positively Utopian healthcare system, if patients are not empowered to share their healthcare goals and enabled in the decision-making process, we are never going to have the best care we can get. The surface of this issue has been scratched, but only just. Right now, treatment of the whole person is rare – in the grand treatment plan, we, as people, barely matter.

It seems like a lifetime ago, but the Supreme Court case challenging the constitutionality of the Affordable Care Act (ACA) is still alive and kicking, and I wanted to check in and see where it stood. By previous scheduling standards, arguments should have been scheduled for the 2019-2020 session, with a ruling in less than six months before the election, but Chief Justice John Roberts is hyper-conscious of his legacy and the perception of the court becoming more and more politicized, so the case was scheduled for a time when a ruling would not have a direct impact on the election.

Everyone is young and stupid sometime. It’s a rite of passage from teenagerhood to adulthood usually. I was no different, except that my stupid was far more damaging than that of anyone else I know. My stupid eventually cost me healthy eyes, fully functioning kidneys, and a host of other things. Even now, 24 years after un-stupiding myself, there could be more to come.

Every year I speak to a group of medical school students about this period of my life (and other things) and one of the very few questions each class has asked is what a doctor might have been able to do to bring me out of it. The answer, of course, is nothing. One has to want help in order to be helped. But it got me wondering what I would say to my young-and-stupid self if I could go back 30 years, to that turbulent time.

The morning the New York Times ran this article, my dad called me and asked -- only half-jokingly -- whether I had written an article for the NYT. Confused, I listened to him summarize the article, which spoke about the chaos of Maryland’s vaccine distribution. This was not a surprise to me.

I have had a difficult time finding vaccine appointments. I qualified on January 25th and immediately put myself on a list. Weeks went by, and after about six more I realized I was going to have to be more proactive. So, I put myself on three more lists, and I continued to check three or four pharmacy sites every day. All around me I heard about people getting vaccinated – at mass vaccination sites, at pharmacies, at Department of Health offices, at hospitals, all the places I was checking but never saw availability. These people were getting links for appointments sent to them a week or so after signing up.

Why hadn’t that happened for me?

Let’s talk about kids. Regular readers know that I am lucky enough to have a bunch in my life. The oldest can’t really be classified a kid anymore, but they will still be one for a while to me, I think. But as much as I love them, I don’t have any of my own, and my conditions have a lot to do with that, just not the way you think.

My mom always knew she wanted kids. My dad wasn’t quite as solid on the idea, but he came around. My sibling also always knew they wanted a big family, from the time they were little. And that’s exactly what they got.

*Deep breath*

I confess I’ve been procrastinating. This post will probably take about 15 minutes to write, but I keep putting it off because it’s hard.

Sunday will be 20 years since my mom died. Right after, I kept thinking, kept telling myself, that if I could just get through the first year, it would get easier.

Nope.

I actually remember having a conversation with my brother about how it was so hard now, but we will blink and 20 years will have passed. Well, here we are. I’m not going to say it’s any easier. Anyone in a conversation with me about my mom can see that I still tear up. But I will say that it’s gotten easier to deal with the very particular and cruel kind of pain of a parent lost too soon.

What makes it even more difficult is a set of thoughts I have had fairly often since she died: Who would I be had she lived?

This week is our fourth anniversary! I have never done anything voluntarily for that long. (School, work, and patient-hood are not voluntary.) Usually, I quit when I get bored, and I get bored very easily. The funny thing is, even though that’s over 200 posts, there’s still a lot to explore. The healthcare space is so much bigger than I had imagined. I guess before the blog, I was living in a patient bubble. I have fairly deep knowledge about the things that involve me directly, but I have learned a lot more through the people I’ve been lucky enough to meet since I started. It occurs to me that you might also be living in a patient bubble – it’s hard to broaden your view if a) you don’t know a broader perspective exists, and b) you use all of your time and energy on family, career, and condition(s). For our anniversary, I would like to share two of the areas I have learned about that are making a point of incorporating the patient voice.

Today I attended a webinar about the patient experience from the perspective of hospital staff. It was interesting, kind of like when teachers would talk in front of me in high school without realizing I was there. (That time I was sitting in the front row of an empty classroom after school in case I needed help from the teacher, it was not my fault the complainer didn’t see me before she started complaining.) It gave me insight into how the school worked that few students had.

It was a different perspective, which is always useful. If nothing else, it’s an exercise to expand the way I think about things. Changing or expanding your perspective can help get you past difficult spots, pull you out of familiar and not-so-happy paths your brain tends to travel. Out of sheer boredom, my brain has been wandering some of those paths more frequently than pre-pandemic.

One of those paths is, “Which is worse, chronic or acute illness?”

This week I was catching up on Kaiser Health News’s What the Health? podcasts and one of the guests* briefly mentioned that she hoped that the COVID crisis would help advance right-to-try legislation. I wondered what she meant. As someone with mainly non-terminal health issues, I have never been in a position to look for experimental treatments through the right-to-try laws. I knew that there had been a big push a few years ago, and was comforted by the fact that they existed, but didn’t know much else. I didn’t think there was anything else to know.

But of course, there was.