Better vs. More Functional

Awesome Neuro-Oncologist: How are you doing?

Me: Physically? Better than I have in 20 years. I lost chronic pain that I didn't even know was there, my energy is starting to get better, and I feel amazing. Mentally? Not so much. I'm super easily overwhelmed, and I can't seem to have enough of a capacity to do everything that needs to get done in any given day and as a result, I'm totally frustrated and overwhelmed for a good 80% of my day every day. How do we fix that?

ANO: ...you're six weeks post surgery tomorrow, yes?

Me: Yes.

ANO: Why are we having this conversation now? We're a few months away AT LEAST away from being concerned about you functioning at full capacity, if not years.

Then she said something I liked even less:

"Just because you have a medical brain injury, it doesn't make it any less of a brain injury just because someone went in with a scalpel and did it intentionally in order to make you better. It takes a long, long time to recover from what you just went through. Patience is how you fix that."

Me: Well, I'm not sure I like that answer very much.

ANO: Um. Ok.

(I have a startling amount of doctors who care not at all about how much I like their answers to my questions. This both displeases me and is super awesome.)

From where did this conversation spring?

I went back to work last week - full time, a bunch of supervisions, a bunch of clients, and 29 total hours of clinical work between those two groups of people. That does not include administrative work, emails, and feeling like I've been hit by a two-by-four and needing a nap in the middle of the day.

To say that it was overwhelming would be the understatement of the universe. I took a one-hour nap last Thursday and woke up to 15 emails and 7 text messages, and this happened whenever I was in session as well and started first thing Monday morning. Every time I was away from my email and phone for more than 30 minutes, I could count on at least 10 pieces of communication between my email and text and client portal.

I'm starting to realize how much lower my capacity is since this surgery, and I think that I've been fighting against it to the point where I haven't allowed other people to even form a whisper of an expectation about my capacity. Others, I think, have this expectation that I was just going to bounce back, and I have physically, but mentally that hasn't happened, and I hadn't clued in ANYONE to it until literally this week. Seriously, I mailed out two packages that have been sitting in my car for the past week, and that was such a huge victory that I can't even express it. Before, I would have just gone to the post office on my way to work, and it would not have been a big deal, but I couldn't for the life of me bring myself to get there until today. Every time I would think about doing it, I'd get overwhelmed and I couldn't do it.

This is very, very problematic. I've set a very, very bad precedent for myself because after my first two surgeries, I bounced back VERY quickly. Not so with this one. Do I look physically fine on the outside? Yes. But, the difficulty is that I become SO MUCH more quickly overwhelmed that I'm experiencing what it's like to shut down as an adult. It happened a lot when I was a kid and I thought I was past it, but I have learned over the past six weeks that I am most definitely not.

This is very difficult because my game face needs to be on more than ever, and I just can't get it there. I'm annoyed and irritable, I'm overwhelmed, I'm antsy, and I'm fighting against what my capacity actually is.

So, what I need to do is be more vulnerable so that people can check their expectations. It started with this conversation with my doctor. I had to be truthful about what I was experiencing, because honestly, my own expectations need the most checking here. What that conversation led to was that I should only be working part-time until further notice. Those are three big words, "until further notice", and I hate them with the fire of a nova. I want LITERALLY more than anything is an end date for this effing nonsense. When can I know that this will be done? Give me a date. Give me a timeline. I know I can go forward into murky territory, but this is not even a little what I want. Give me all of the medical appointments. Give me all of the PT or the speech therapy or the OT. I'll go every day if it means that this gets done sooner.

And yes, I've reached the bargaining phase of all of this bullshit. What can I do to make this go quicker and just be done? The answer is radical acceptance. This is where I am. No, there is nothing that I can do to change that, and the only thing I CAN change is how I respond to it. I literally have no choice but to meet myself where my capacity is. Will it get better? I hope so, but I'm not sure. I'm really not sure, so I have to plan for the idea that it might not.

My brain is currently fighting with itself - it's wavering between being frustrated because why can't I just respond to that email or scan that document and send it, it takes two effing seconds, and the rational side of my brain, which says that I have 11,000 of those requests on a regular basis and my capacity is lower because I just had brain surgery 5 weeks and 5 days ago, have some self-compassion already, JEEZ. It's the internal wrestling that's difficult and frustrating, and I absolutely, unabashedly hate it.

An Open Letter to Primary Care Doctors Everywhere

Dear Primary Care Doctors,

If there is one thing that I've learned over the past year, it's one thing:

Do better.

Just do better.

What does this mean? Read charts before you see your patients. It's a part of good medical care. I know that if I took on a new client and someone sent me records, I'd want to see them before that person ever set foot in my office because I wouldn't want them to have to rehash things that might be really difficult. Granted, I'm a mental health practitioner and so I deal with some of the most sensitive stuff that anyone can bring into a practitioner's office, but still. The premise still stands. Good care means knowledge about your patient.

Medical trauma is a thing. While it doesn't show up anywhere in the DSM, for sure it causes PTSD for people. It's not for me currently, but I'm still in my own medical trenches and because of my own mental health history, I'm definitely on alert for symptoms, because my risk of developing it due to medical trauma is high. Having to talk about all of this in detail could have potentially been retraumatizing for me if I were not able to manage as well as I have been.

I hadn't seen my PCP since this time last year for my annual checkup. My hysterectomy had just been scheduled, and I knew that thyroid stuff was coming, but I didn't have any idea what was to come in 2021. For all I knew, I was going to have the hysterectomy and that was going to be it. I hadn't yet had the ultrasound of my thyroid that put my endocrinologist on high alert and had her immediately commit to me having my entire thyroid removed when we previously had just had a discussion about me having half removed. I hadn't yet had any kind of conversation about a meningioma. In fact, the last time I spoke to anyone in my primary care office was in May, when I was called by a nurse who told me that I likely had a meningioma and that I needed to see a neuro-oncologist. I didn't so much mind that, because at the time, I trusted that someone would be following my chart at some point before I saw anyone in my primary care office again.

I was mistaken.

I had my annual checkup this past week and I was forced to rehash everything, because this doctor clearly had no clue what had been going on for me medically. She was surprised when I brought any of it up, as if it was new information. The Lynch Syndrome diagnosis. The endocolonoscopy. The hysterectomy. The thyroid surgery. Thyroid cancer and radioactive iodine. The emergency cerebral angiogram three weeks before my meningioma resection due to a 12-day headache. The menigioma resection, for which I was still on medical leave at the time of this appointment. I was off kilter for the rest of the day after this appointment, and I find myself still bothered by it. I know that my PCP office had access to all of my specialist records, because I signed releases about 15 different times. I know that in my chart, there were notes about these surgeries and medical procedures. What I've realized is how frustrated I was that I had to talk about all of this. The person that I saw tried to be as validating as possible - "Wow, you've been through a lot this year." Yes. I have. And it wasn't helpful for me to have to talk about every bit of it in this appointment. Follow-up questions were appropriate. Disbelief and surprise that I had three surgeries and two medical procedures this year was not.

There has to be a better way. Please find it.

Sincerely,

Me and all other people who've been through a ton of medical stuff.