“I Thought I Was Going to Have to do CPR”

I am the car that you’d call a lemon.

PART TWO.

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I am still typing with hands that aren’t working at 100%- lots of nerves being weird, lots of misspellings that my laptop is misspelling more, lots of mishaps- so I truly hope that there aren’t so many typos abound below and this week that you want to return this Substack to the shop.

(Continued tomorrow….)

“What is that alarm?”

“Is it the IV?”

“No, no it’s something else.”

Slowly, the sets of eyes in the room began to focus on me.

I, the Deaf person who can generally sit in perfect harmony with a blinking IV pole for hours (so long as I can’t see the light).

I, you see, was the source of the sound I couldn’t see.

“No,” I said in disbelief, partial numbness, “It’s not.”

“It is”, my family replied.

We aren’t always this important at being Earnest (Hemingway and his very short sentences), but we had been through this before.

The ICD inside my chest was literally alarming us… the evening after waking up from this most-recent cervical spine surgery.

The surgery itself was many more hours than we had been expecting, and the recovery had so far been laced with pain.

“I handled my last C-spine surgery like cake,” I had said arrogantly to the surgeon, weeks before in his office, “I was back to work a week later. This will be cake”.

It was not cake.

“Make sure you catch it the next time it happens!” I demanded to the hearing people in the hospital room… but it took us four more missed before we captured the sound.

Thankfully and serendipitously, it happened directly in front of the neurosurgeon himself (so no one had to take my word for it).

If you’ve been a patient before, you know that “your word” about your-own-self means very little to anyone, much like being a woman in any room with a middle class white male.

My favorite doctor I’ve ever had was a middle class white gentleman who believed every single thing I said about my body (I was always right), and retired much to my chagrin for me but happiness for him… but in the process, he taught me what it felt like to have someone actually care about your survival.

He would come into my room after sitting outside of it, on a computer, looking over years of old labs and files- because he wanted to explain a particular theory he had about my liver or a certain trend he was seeing in my systems.

To this day, I’ve never had a doctor “sit outside my room” (in metaphor or otherwise) and pour over my charts with that amount of time before he ever spoke about my case- because he didn’t want to speak about me, before he truly looked at the full history of “me”.

I am grateful everyday that he set that standard of care in my mind (and of how gentle-men can be), BUT… I also can think back to the time that something I was reporting happened in front of him, as well.

I was in the hospital for a J-tube placement many, many years ago, and had been telling him for some time about these weird pain attacks I was having which he thought were gallbladder related.

The day after the J-tube surgery, I went into an attack.

He was able to see, hear and be witness to it, and by midnight that night, I was being wheeled into gallbladder (and surprise appendix) removal. He didn’t make me wait until days later, like one would assume- even though back to back surgeries was a new life experience for me at that time- because he didn’t want to risk anything once he saw how severe what “my word” had been reporting actually was.

To this day, I’ve never had another middle-of-the-night surgery, but can still remember feeling like the hospital looked like a dystopian novel; An abandoned, haunted, empty shell of sterile white halls.

The recovery area after was like a twilight zone- just a couple of staff still around, no other patients, empty emptiness.

But the beauty of knowing that a surgeon could witness something, care, and then stay behind to make sure no suffering was ever extended was something I’ll never forget.

Lately I’ve increasingly been believing the following theory:

A mentor doesn’t have to be someone in your field.

You can be mentored by someone like a surgeon, a nurse, a tech… Purely because you see how humans can treat other humans, and learn from that in any regard.

My mentor-surgeon now retired, I haven’t had many instances in which a surgeon has seen firsthand the thing that we are reporting… until a few weeks ago when my neurosurgeon directly heard my heart-machine going off inside my body.

“I thought I was going to have to do CPR,” he joked, as if he wasn’t joking, all of us a little rattled… but I explained that this had happened once before, less than a couple of years ago, after my defibrillator went off twice.

Now, I was fresh out of my latest spine surgery (I wish I could say my last)… and beeping like a 1990’s human flip-phone who’s been programmed with a bad ring.

“Your battery is low,” the neurosurgeon-PA had said in the pre-op a day before, while turning off my gastric pacemaker inside my stomach, before disappearing to prepare for the operation.

“Oh wow!” I was shocked but also not, since it works so dang well, “Thank you for letting me know.”

“Can you call their office to let them know it needs to be replaced soon?” I asked my partner, as I did all my usual pre-surg superstitions before they wheeled me back.

Knowing that the battery was low means that- because the gastric pacemaker keeps me eating and literally digesting so much better than you’d imagine- I now have another (easy) surgery ahead of me soon because it will need a switch out.

I am not worried about it… But it IS another thing added to the very long list of things that need to be fixed.

I am the car that you’d call a lemon.

We had stared at each other with the sort of weariness of people that can’t foresee an ICD alarming inside a human body after a successful(ly long) double disc surgery, or a gastric pacemaker we can’t afford to stop working unexpectedly, or a pace in this world that makes every pacemaker battery inside low.

“Your battery is low,” the neurosurgeon-PA had said before disappearing… And I don’t remember seeing her in the OR room thereafter. Nor the surgeon in the OR. That is not their fault and I am not criticizing them… But I am about to say something pretty sad and blunt, so prepare yourselves (or skip the end).

I know they were in the room and I trust all of my many doctors. I’m sure I was asleep by the time they got rolling… But I do miss the days of surgeons making sure you saw them, and could say “goodnight” before you were put to sleep.

That old school way of practice- something my mentor taught me- was a way of making a patient feel like they’re safe in your hands.

“What music are you playing?” I’ll often joke for no reason, with the many nurses who can’t lower their masks to talk with me, “I know I’m Deaf but my soul will care if it’s something bad.”

(I mean it.)

Sometimes a nurse will pull their mask down in the cautiously clean-air to quickly warn me about what they’re going to do, and sometimes they don’t.

I know the drill by now.

I know how we transfer from the stretcher to the bed.

I know how they’ll strap arms down, and take your underwear off even when I tell them I hate that because it’s a surgery that’s not even remotely near that part of my body, and cover you in “the octopus” (the telly-heart-monitor that I have to wear every single hospital stay as a heart patient and carry to and from the bathroom with me- wishing it had some sort of clip that attached to my clothing better so I could have a free hand for signing and pulling my IV pole- and, it turns out, gives me a disgusting blistered rash all over my stomach and chest on the other side of this surgery. My poor neck- split open from a scalpel- covered in an allergic reaction, swollen and raw. A new thing to pretend I don’t care about).

I know they’ll put the cannula under your nose in the way I don’t like (I normally reverse it’s orientation when I wake up, because I know how to Hazel Grace more than they know how to Hazel Grace, you know?), and then they’ll eventually put the oxygen mask over your face- which partially blocks my Deaf-person line of sight, and thus cuts off any remaining assurance that no-one is likely giving by then before they put me under.

I sometimes wish that medicine gave us more than an autograph on the part of you that they’re about to cut through.

I wish that they gave us a proper verbal lullaby before we disappear.

I want to look my surgeon in the eyes, and know that he knows that it’s me he’s about to move around like a naked puppet. Something that haunts me, though I do it regularly.

I want a mentor.

I want eye contact.

I want to be a human again.

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