The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl-Volume 88: Enlightened Chapter Two
In May I put the first chapter of my book in a blog and many said they expected the second chapter to be the next blog. Well, here is that chapter---the chapter about my time in the hospital post-accident. It is dark, because my vision was dark. Next week marks the third anniversary of the accident and my blog will be a reflection of what I have learned in three years of visual impairment.
Chapter Two: My Time in Purgatory (or the Hospital)
I got moved in the middle of the night onto a floor of the hospital known as a general floor that was not at all general. I was on a floor where they put people who are waiting to be placed in nursing homes but have nowhere to go.
Some kind of purgatory.
I was in the middle of a span of rooms with people in various states of dementia and the other ailments that mark the path of the slow decay toward death. The forgotten, those without visitors. In the night I heard moaning and sometimes crying. It did not make for cheerful surroundings or a motivated nursing staff.
And then there was me, freak-accident-girl, my room a scene of chaos with various family members and doctors checking in and out at all times of the day and night.
Lights in the eyes, drops in the eyes, bags of steroids hung and drained, and noise. There was so much noise that I was suddenly hypersensitive to in my blindness. Sleep was impossible and I wanted to sleep because I wanted to dream and to then wake up and realize that this was all some kind of strange nightmare. But it was oh, so real.
For 5 days I was stuck on that waiting-to-die floor, which I began thinking was kind of like the isle of misfit toys from Rudolph the Red Nose Reindeer. We are broken and nobody wants to play with us.
For the first 72 hours, they pumped me with steroids so I was feeling fine, eating and somehow managing my family and my daughter’s life and schedule lying in a reclined position in a hospital bed. I am still not sure how I managed all that, but I did: making sure my daughter was being taken and picked up from camp, cared for and fed, and put to bed in her usual routine.
And I did it using voice commands to my family and voice commands to my Blackberry, which I could no longer see. I knew, in theory, that the phone had voice commands. And I also learned that the voice commands work like 30% of the time. I renamed the phone the Blackberry Bitch because she just did not understand me. Usually after the fourth attempt to call someone, I wanted to chuck it across the room. I adapted and found that if you kind of speak in a computer like voice that mimics the voice on the Blackberry it can understand you. I was sure it was saying, “Oh yes, you are kindred, and now I can tell what you are saying.” That served me well for a few months before I got a new phone.
I also broke up fights between my family members, arranged a schedule so that someone was with me most of the time, and spoke to some close friends. I realized I could still get a lot accomplished while in a hospital bed.
It may have been the steroids; they make you super-human, or at least I am convinced of that. Lots of other things happened during those five days, some which I remember clearly and some I do not.
Honestly, like the days of constipation and the remedies, I just don’t want to recount.
But I will.
~
I was in the hospital for 2 days until someone finally got me my clothes and a nightgown and toiletries. The nurse seemed somewhat baffled when I said I did not have any of my toiletries with me yet, so she handed me a standard hospital issue baggie of personal care items. At least I could brush my teeth.
In that really confortable hospital bed, where I was trapped by the IV lines going in and out, no one thought to hold me or lie down next to me. I am not even sure my family touched me much except for the stroking of my hair or a gentle pat or hug.
I must not have realized no one had really touched me or comforted me until the third day after the accident when my ex-boyfriend showed up and the first thing he did was say, “Move over,” and climbed in the bed with me and held me. I had needed that but not known how much until that moment.
I am not sure why no one in my immediate family could do that for me, but the reality was they couldn’t. Maybe it was out of fear or shock or their general inability to focus on someone that is not them.
You would think that it could be about me, in that moment, in that crisis, in that hospital room. But, again, it was not about me, it was about them.
There were fights in my room, loud yelling between my mother and sister about who was going to do what when it came to managing my daughter’s schedule and someone being with me at the hospital. And, interestingly and most importantly, about work-- how work, their work, was going to get done. There were computers and phone calls and business going on in my room all the time and it was jarring.
My sister stormed out after a few days because there needed to be melodrama and she was not the focus of attention.
On the fight days, the cursing and screaming was so loud and so foul that the nurses kicked them out of my room. I think even the dementia patients and the half-dead people heard the commotion.
Even though I could not see, I could tell through my talks with the residents and their comments that they thought my family was a little nuts or unhinged in some way. Or maybe I just said my family is a little nuts and don’t do well under stress.
~
There were times I was left alone in the hospital. My family knew my ex-boyfriend had to leave early in the morning, but no one came after he left. After a few hours of trying to amuse myself in darkness with nothing to do, a nearly impossible task, I started the phone calls which amounted to “Where are you?” and “I am hungry.”
In those hours I also had to use the bathroom. I was hooked up to IV’s, could not see, and therefore usually needed a little assistance. I hit the call button several times with no response. I got angrier and angrier because I felt helpless and finally I got up and managed to start grabbing the cords to unplug the IV’s, felt my way around the room, IV stand and cords in tow, made it to the door, flung it open wide and began yelling that I needed help and needed it now.
I yelled in frustration at the top of my lungs, but I could hear no movement or sense that anyone was in the hall. So I kept yelling for about five minutes until a nurse came. She seemed annoyed I was yelling, but I was more annoyed they could not respond to a call button. That was when she realized I was blind.
They promptly put the bed alarm on me and a sign above my bed, which I could not see but assumed it said something like, “Patient no be able to see good.”
It took all that yelling (finally mine) on the fourth day to get shit straight. It was my first taste of how slack systems would be and how hard I was going to have to fight and yell and scream to get the help I needed.
~
After they took me off steroids, my gastrointestinal system shut down and the mood fluctuations began. This is when I realized the power of steroids. They ramp up your body and kind of make you feel like a superhero, impervious to pain and creating a false sense of reality where you think, “Hey, this is not so bad.”
But it is an illusion. And when the steroids are taken away you not only crash, you begin to feel how your body really feels. More importantly, you realize how you really emotionally feel, after having a traumatic accident.
And you feel like total shit. That is the best way to describe it.
I asked for more steroids, but once again, I had been given the maximum dose (for a human) and they cut me off. I think this time I was drug seeking.
So, steroid-free on the fourth night in the hospital, what I now call a really-bad-night, all the fear and anger and the realization of what had happened hit and hit hard. It was like the world of fantasy I was living in with my steroid-washed brain and super-hero cape shattered into shards of jagged glass pieces that were my reality.
And it cut deep.
In the dark that night and in my darkness came an unraveling and an untethering from the earth and in a way, I lost myself and my way.
I kept asking my family to not let me die. Even though I was not dying, something was dying inside me or maybe the old me was dying. Somewhat like a vampire story where you are being turned and your human self is dying off.
Or maybe I felt like I wanted to die. I willed it, I wished it, and I somehow thought if I gave in to the fear I would just leave the earth.
Finally, in my darkness, I felt disconnected from that hospital room, from the world. I no longer felt part of it nor an observer, but the observed. It did not feel good.
I spent most of that night somehow trying to escape that room by locking myself in the bathroom, curled up in the fetal position, cold tile carrying the weight of my body. And as in Pulp Fiction, the bathroom scene means something bad is going to happen.
The one thing that kept me tethered that night was the fact I had to be a parent to my daughter. I was still a mother and that sense of mothering and unconditional love for my child is what brought me back.
What also kept me tethered was that I began to pray, and pray really intently, for the first time since the accident. I prayed for strength, for vision (not sight), for the ability to care for my child, for God to save me. And I prayed, like I had in the past in moments of illness or distress, that God be near me and with me. And in that moment of deep prayer came a calm and a realization I had to get through this part to get to the next. I realized that my life as before was over, and more importantly, that I had the strength and grace to transition.
And the bad night was over.
~
The baby-doctors (they prefer to be called residents), constantly popped in and out of my room to look at my eyes. I had sustained a level of blunt force trauma and retinal cell death (called commotio), which they had never seen before.
I was in a teaching hospital and this was a teachable moment. I was glad to be of service.
I also learned some things about residents during my stay. For example, length matters. The longer the coat, the more time in residency, so the short coats can be mostly ignored. They are continually sleep deprived and are constantly writing notes, which means there are probably mistakes and typos being made. I also discovered that the residents, at least the men, are all married. They get scooped up quickly in medical school and probably have wives way too hot for them.
And they don’t correct you when you get their name wrong or seem to mind bawdy jokes. I called my two main residents the Budman and Jackoff for days until Jackoff says, “My name is Dr. Jack.” I really thought he said Jackoff, really I did.
My main resident baby doc who also had the first name of my recent boyfriend (which I could not decide was good or bad, just familiar) was really amused when he pulled a splinter of wood out of one of my eyes. I think he even slipped and said, “Cool.”
They also wanted me to bring in the bands of terror that did this to ne and took pictures of them at all angles. I suggested we get me in the picture and all pose around the bands. Good times.
In the hospital surrounded by family and nurses and doctors coming and going, talking and not talking, I sought the truth about how bad the damage was to my eyes.
What I learned is that if you don’t ask, they don’t tell. I also learned that my family is really terrible at asking questions. It was puzzling to me that even the nurses had no clue what had happened to me. They just knew to hang bags and put stuff in my eyes. And they did not even seem to get the sense that I really was in pain, because some of the nurses were really rough, grabbing at my bruised eyes to put in the drops.
One nurse missed my eyes completely with the drops so my eyes caked up and she could not get them open. Then she threatened to cut off my eyelashes. I faintly remember telling her to get out of my room and the next day I told the floor manager she was not to be my nurse again.
The nurses did not even know I could not see and they were late with meds and failed to respond to most calls. This was partly due to complacency from being on the waiting-to-die floor. I really hope that it would not have happened on an acute care or trauma floor where people actually understand you are in pain.
Every single day, when they came in the morning to write the nurses’ names and numbers on some dry erase board, I told them, “I cannot see that board.” Not even this clued them in that maybe I was kind of blind.
Even in the hospital I must have been faking it well, or functioning too well to be in pain or blind. This would become a recurring theme.
~
After dealing with many doctors, I realized that they were trying to give me subtle hints that I was screwed.
My one main resident in the hospital kept saying, “This is a very, very, very bad accident and you’ve sustained a very, very, very bad injury and I’m so, so sorry this has happened to you.”
This was his attempt at bedside manner, which I appreciated. But it was also kind of like saying, “You’re screwed lady,” which I didn’t realize until later that this is what “You have a very, very, very bad injury” means. I thought he was trying to be nice.
~
The cornea specialist came into the hospital and said that any surgery on my damaged corneas, iris, or pupil would be purely cosmetic. I should have at least questioned that. “Gee, those are important parts of the eye. Why would it be cosmetic elective surgery?”
But I did not ask.
Later I understood this was code for the fact that if your retinas are damaged, it doesn’t matter how the other parts of your eyes are functioning. And, of course, that was the case.
I didn’t know enough about the retinas at that point, so I just nodded my head and said, “Oh, that’s good, they can fix my cornea and my iris so I look normal.” But what I wasn’t hearing was that it was cosmetic because it’s not going to help you see.
I hadn’t taken biology in a long time and I didn’t have How the Eye Works for Dummies.
~
I especially liked the doctors who would use all this medical jargon and then say, “Wow, you really whacked the heck out of your eyes!”
Or even better: “This is a real bummer.”
It was true, it was a real bummer, and I did whack the heck out of my eyes, but it’s funny to hear doctors talk like that. Those are definite signs that you are screwed.
~
I saw all the ophthalmology attending physicians in that hospital, sometimes more than once. They all wanted to look at the freak-accident-girl’s eyes. I had one who gave me some crazy-best-case-scenario, which involved my getting back 20/60 vision in one eye.
Right after that attending left the room, my resident said, “Don’t listen to that, he is guessing and with the amount of blood and trauma to your eyes, that is not a likely scenario.”
He was awesome to do that because the best case scenarios give you false hope and hell, given the fact that I had a one-in-a million freak accident, I was pretty sure I wasn’t coming out with the best case scenario.
There were doctors who treated me as if, because I lost my sight, I must have also lost my brain, so I would not understand what was happening or I probably just did not want to know right now.
Pat, pat, pat. “I think this is the curse of macular degeneration.”
These eye docs are used to dealing with older people who really don’t ask a lot of questions or want to know what is happening in full medical terminology. It’s more like, “Just give me my shot that I have no clue why I am getting.” That is the mood in the mac degeneration mills.
But in general they are surprised you are asking so many questions and you don’t even want the answers dummied down at all.
I never really got answers in the hospital except from my resident who just said, “There is too much blood in the field and we can’t tell, but it's not going to be good.” Thank God for that cute young Jewish boy (married, unfortunately) because he was new and fresh enough to be able to say, “We do not know.”
The attendings would not say that. But I needed to know so I knew what I would face in the future. It took me three doctors and three months post-hospital to get there, to that place of uncertainty and truth.
Finally, a retinal specialist told me straight that my ability to see, long term, wasn’t going to get much better. “It is what it is,” he said. But by that time, I already knew that. I had gone back into my world to mix with the sighted.
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