Affected

November 22, 2020

I’m wondering how long he’s been practicing his slight-head-tilt/concerned-brow-furrow/nodding posture. It’s all I’ve seen for the last twenty minutes and he’s really got it down!

I’m having my initial visit at the neurologist my GP referred me to. I’m bringing my concerns about the depression, vertigo, and a handful of other Chiari symptoms to them. I’m doing the due diligence that I need to when my body speaks up like this. Before I see the neurologist, he’s got his CRNP in to perform the initial exam.

He’s brand new. I can tell. Not only is he not that much older than I, but I can tell he doesn’t have that hardened “I’ve seen it all” kind of feel that the more experienced CRNPs, doctors, and nurses have.  

What really seals it though, is that as he’s leaving to get the doctor, he says, very earnestly, I might add, that “Well, don’t worry, we’re going to figure out what’s going on and help you feel better.”

Haha.

Okay. 

He’s new. He’s very earnest, very genuine, and really does believe it.

I know a little better. And so does the doctor. After the neurologist, a doctor who’s been practicing medicine for over thirty years, takes a look at my body, my medical binder, and my scans, he says, matter-of-factly, I might add, “Well, Madison, I’m scratching my head. We’ll try and find an answer for you, but we might not.”

That’s more like it.

“Is it life-threatening?” I ask.

“Probably not.” he shrugs.

Cool.

I like him. This is my kind of doctor.

As I’m standing at the check-out desk scheduling the tests he wants to run, one of which I’ve had before, one of which I haven’t, I can’t help but think about the stark differences between the two. The CRNP was very earnest, but a little naive. We discovered DNA in 1953, but we didn’t decode the genome until 2001. 2001!!!! I was alive! That’s less than 20 years ago at this point. We don’t know everything there is to know about the body. Its complexities will probably never be fully discovered. We pour billions of dollars into researching it, establish huge companies and government departments, and universities to try to figure it out, but there’s still such an incomprehensible amount we don’t know. A hundred years ago I would have died from pernicious anemia because we didn’t know at the time that we could make B12 and inject it into the body.

I found a neurology medical textbook from the 1940s at a thrift shop the other day and under Chiari Malformation it says, “Most cases represent monstrosities. Generally, the children either die after birth or survive as idiots.” Monstrosities!! Idiots!! In 1944 there was literally no hope for me to be alive or even functioning. Wild. Medicine’s come so far, and it’s got so far to go still. Because we know a lot more than we did we don’t realize how much we still don’t know. And patients feel the burden of that with unknown diagnoses, unexplained symptoms, unresolved pain, unfulfilled hope.

And that’s the thing. I know this. I know the human body isn’t fully explained and I know the deal with how this whole medical process goes down, I’ve had enough practice, but I still walk out of the office feeling disappointed.

I thought it would be easier.

I thought I’d be unaffected by now.

I thought that after grieving and settling in, that after working through a lot of the trauma, after processing a lot of the feelings surrounding my medical history, that I’d be okay when it happened again. I thought that when I was facing an unknown diagnosis and a number of tests and follow-up appointments that I would be okay and that I’d just handle it, business as usual.  I thought I had built more resilience than this.  

But I’m still sad.

Sure, I’m not as fearful and I’m not as overwhelmed, but I’m still affected.

Why am I still affected?

This time I’m not scared of the unknown, I’m wary of the known. I know what surgery looks like, I know what this all takes. I don’t know that I have it in me. I’m not overwhelmed by what could be, I’m exhausted by what is.

And the tests haven’t even started yet.

An EEG, lab work, an ultrasound of my carotid artery, a referral to an ENT, a potential referral to a neurosurgeon.

A full-time job, keeping myself alive and well, maintaining my relationships, depression.

It’s a lot.  

It’s too much.

I need some medical margin.

As I’m thinking about it, I’m thinking it might be a little unrealistic for me to expect that I could be completely unaffected by the prospect of doctor’s appointments and tests that poke and prod and require a lot. Maybe that’s not what healing is.

Maybe healing isn’t getting to a point where I’m no longer affected emotionally or physically because that’s probably unrealistic. I don’t even know if that’s healing, I think it might even be numbing.  

Maybe healing is realizing when I’m affected, I listen to what those feelings are telling me and then adapt accordingly so I can move through whatever it is that’s affecting me. Like right now. I’m feeling a little sad and like it’s too much. When thinking about how it’s too much, my feeling is telling me to make some space so I can take the hit. Well, what does that look like? What is medical margin? It popped into my mind as a concept, so now I need to figure out what it means.

Okay.  I can do this.

I know that seeing a neurologist, getting these three tests done, having a follow-up appointment and a new appointment with an ENT is probably going to cost me $250 in the next month. So I need to look at my finances and see where I can free up those funds in my budget. If I can’t, I need to look at if I should draw from my emergency fund or savings account. Maybe I should set up a medical fund so I can put money toward that when I don’t need it and draw from it when I do? That’s a good idea!

Okay, so I need to figure out where I can create a margin in my finances so the monetary stress of this can be off of my shoulders.  

But that’s not all. I also know it’s going to take probably five hours of time for the tests and I always feel kind of down after the tests and appointments, so it’ll probably take a few more hours of emotional recovery time. So I need to look at my schedule to see where I can free up some of my time commitments so that I have the time for the tests and appointments and so I can have the time and space alone to recover and regroup.

But I also need to figure out ways to be kind to myself during this process. Maybe I update my yoga membership to include a couple of extra classes a month so I can give my body a little more TLC. Maybe I allow myself to buy dinner at a favorite restaurant when cooking just feels like too much. Maybe I buy a couple of extra fiction books I’ve been wanting to read so my mind can escape for a little bit. Maybe I tell my friends what’s going on and then allow them to encourage me. When they offer to pray or offer their home for a safe refuge for a few hours or offer to watch a movie over Netflix Watch Party, maybe I say yes, where I would have said, “I’m fine” before. Maybe I accept them caring for me. Maybe instead of saying no because I feel like a burden, I let them appropriately step in to carry the burden with me for a little bit. When they’re standing under it with me, sharing its weight with me, I’ll feel stronger and able to carry it a while longer on my own when they step out after the movie is over or when I leave their home or the prayer ends. Maybe being kind to myself isn’t uniform and looks different every time. Maybe.

Maybe we’ll find out what’s wrong with me. Maybe we won’t. I’ll create the medical margin in my life to allow for the process and I’ll have the insight into what I need to do moving forward the next time this happens. It is affecting me, but that doesn’t mean that I haven’t healed at all. It means I need to accept Kristen’s offer to come over to her house for dinner and a cheesy Hallmark movie.

I think I’ll go start selecting one now.

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