There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully undertrained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
In 2016 I was admitted to the hospital for a procedure called a flap surgery. To make a very long story short I developed a stage IV pressure sore down to my bone on my bum, which required a surgery to essentially move a lot of fat and tissue around on my behind to cover up the giant wound. This involved over 400 stitches and 200 Staples. At that time I was going in for my seventh surgery after six years of living with spinal cord injury. Of course there’s always a chance you won’t wake up from a surgery or complications may ensue, but I was fairly confident that my medical professionals were going to get very nervous on how to handle me after this major surgery.
How did I come to this conclusion?
Simply put, experience. I had been in the hospital many times prior and my body reacts differently to pain and surgery than an able-bodied person does. Let me explain … Due to my paralysis I don’t feel physical pain. My body reacts differently in that if you, for example, stab me in the leg with a knife I won’t feel the knife going in, but my blood pressure will rise, my nerve pain will go crazy, and my heart rate will start bouncing around.
Whenever I have surgery on areas that I do not have full sensation my body reacts by going into something called Autonomic Dysreflexia. Your body has two separate nervous systems; your central nervous system and your autonomic nervous system. Think “automatic.” Your autonomic nervous system controls all of those functions you don’t think about such as sweating, blood pressure, thermal regulation, and heart rate. When you sustain a cervical level spinal cord injury your autonomic nervous system goes haywire meaning you do not have the ability to control blood pressure issues, you don’t sweat above the level of injury, and your thermal regulation is all over the map.
So, after each surgery you can give me a tremendous amount of pain pills, but it’s really not going to have much effect on my physical pain levels. Doctors always seem to want to hook me up to morphine drips to shut me up. However, before each surgery I do try to inform them that they should not be alarmed because my body’s way of expressing pain is by throwing my blood pressure up and down like a yo-yo, which makes medical professionals particularly nervous because I’m either passing out from low blood pressure or potentially having a stroke from high blood pressure.
When I woke up from the flap surgery I told them to expect this. Did they believe me? Of course not. Why? They know better, right? I think not.
In any event, I was on the surgical recovery floor when, surprise surprise, my blood pressure started to have its own club like dance party. The nurses and doctors on that floor could not get my blood pressure under control and I assured them they need to give me 7 to 10 days, and I will return to normal. They were so nervous because I’m sure they didn’t want to kill the quadriplegic and they had no idea what to do to help me, so they shipped my butt (figuratively and literally) up to the ICU. They basically passed me off to somebody else for what I’m sure were liability reasons, safety, but above all, they really just didn’t know what to do.
I was hooked up to every monitor you could possibly think of because one moment I was lucid and aware,and the next moment I was out like a light. This undoubtedly must have been quite alarming for them, but I kept trying to explain, to no avail I might add, how autonomic dysreflexia affects people with spinal cord injury.
I was trying to hang on for dear life while simultaneously trying to stay alive, and trying to educate my medical professionals in the process.
Hours turned into days, which turned into weeks, and all I wanted to do was get out of hospital to go home to recuperate because I know my body best. When you are practically living in the ICU you have to find things to do to pass the time otherwise you start to go a little bit batty with the amount of people in and out of your room, machines going off with random noises left and right, and those violent lights above your head being shut on and off all the time.
Since I am quite a veteran to surgical procedures I had already made a strategic plan for the ICU including working, reading, connecting with people, meditating, laughing with the nurses, and generally keeping a positive attitude because, well, as countless scientific journal articles have shown, happy people just recover more quickly.
Despite my blood pressure episodes I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
Why an ICU sexy photo shoot of course!
I was really bored one day and I wanted to show that you can still be sexy with a copious amount of tubes popping in and out of your body, laugh at the absurdity of your life situation, and potentially shock the hell out of your doctors.
On one particular afternoon when the days finally seemed to be blending together like one long Groundhog’s Day from hell, I asked my mom if she would be my photographer. She looked at me with an inquisitive expression not knowing what I was specifically asking her to do. My mom is the best though as she always goes with the flow and enjoys a good story.
I informed her I wanted to shed light on disability, sexuality, hospitalization, and show people that just because you are in the ICU does not mean life is God awful. I asked her to undress me and lay a beach sarong across my body, stand up on a chair, and pretend she was my professional photographer. She gleefully accepted and found the nearest chair she could(because she slightly vertically challenged) and we were off to the races for the photo shoot.
I was feeling pretty poorly, but laughing hysterically because the nurses kept popping their head’s in and out to figure out what on earth we were doing. They thought it was hilarious, but when a doctor walked in unannounced I told them I would appreciate if they could come back in 30 minutes because I was in the middle of my photo shoot. No I’m not kidding, I actually asked the doctors if they could come back at a later date because I explained to them this was for my mental sanity.
It was an hour of my life in the ICU that I will never forget. I did it for the story
because what is the point of going through these seemingly insurmountable challenges of life if you can’t get a great story out of it to giggle at down the road?
Our memorable ICU photo shoot was so impactful to certain nurses that I even stay in touch with some of them today; and I’m sure they certainly will never forget me as I’m confident you will probably only find a handful of people (if that) who decided to get half naked to photograph all of the tubes in their body while in the hospital.
No matter what hand you may be dealt in life it’s your choice whether you choose to live it with a little bit of grace, dignity, elegance, and dark humor or not. I suppose dark humor is my survival tactic when faced with challenges in life that just seem wildly unfair. That’s life though. Life is unfair, but, again, it’s your choice how you choose to perceive a situation.
I choose to live by the motto “Do It for the Story.” You never know how many days you have left to create a fun filled and slightly quirky story.
“Carpe Diem” baby is my motto — just wait to see what I have planned for the next time I’m in the hospital, and yes, there will be a next time.
You never know who you’re going to meet and how they may affect your life, which is precisely why I love meeting new people because I never know what journey they’re going to take me on, and how I will affect their lives or how they will affect mine.