One mind game after another. I had such little movement to try to point out letters to
communicate, and it’s a guessing game of charades. Communication is a key element to
survival of our species, and I've taken it for granted. In comes that physical therapist (I would
come to call them physical terrorists), and I wonder how to keep him away from me. The
guessing game is getting old - real old. They're never right on what I want or need. No one is.
Then they want to put me on a tilt table. They want to tilt me up so that I can start to move
blood around in my body and not be lying flat all of the time. About an hour later, I'm on the
carnival ride from hell. I tolerate it about two minutes, then I'm out like a light. Low blood
pressure – high blood pressure – these are things I will be fighting from now on. Medical
science can lower your blood pressure, but it seemed totally ineffective at raising mine. Drug
after drug is tried, but that becomes a chemically induced roller coaster of side effects and
another hell to battle.
I had seizures. Test after test was done, and nothing abnormal. Then the drug cocktails and
more challenges began. My dad and sister are begging Lisa for the list of drugs I am on. They
are both in California and trying to help figure out what is going on. The seizures were getting
closer together and lasting longer. I remember Dr Selma coming in and telling them to give me
Indomethacin.,Every shot was a seizure.As witnessed by my good friends Dan and Kim. One
of them had everyone jumping for a Code Blue, one of them the nurse came in to me with a
seizure and Dan having a seizure on the floor beside me. Still the trial of drugs continues.
Meanwhile my dad and sister (independent of each other) figure out that I am getting five
different drugs that all can CAUSE seizures and that my seizures started after they began
giving me one of the drugs. This took awhile for the doctors to sort out.(They gave me anti-
seizure medicine) At this time I had many different doctors and they all had their own
opinions of what was going on and how to treat me. No one seemed to communicate with each
other, and the drugs just kept being piled on. One of the many things you can do is to buy a
drug book and learn the drugs they are giving you. This can help you understand why things
are going on in your body. But… keep in mind that no drugs act the same in a spinal cord
injury as they do in a “normal” person. Once a spinal cord injury happens – at least at my
level – the WHOLE body changes. Feedback mechanisms change, responses change,
everything changes.
Out of the corner of my eye I could see a huge needle taped to my life support screen. Things
had changed for sure. I didn't’t understand what was going on with my body, and my fiancé
couldn't’t cope. She came into my room yelling at me because the nurses didn't’t call her when
I had the Code Blue. The nurses and doctors were frustrated with her because she always
smelled like alcohol and would try to tell them how to do their jobs. Things were falling apart.
This is about the start of my recurring dream of floating around with a room of nervous
systems hanging on a rack. It was kind of like a closet full of hanging clothes in a way. In and
out I go through their systems finding out where they’re blocked and fixing them. I also had a
weird dream of just dying of thirst for a drink of water. There was a faucet dripping above me
and I wasn't’t able to reach it to turn it up so I could get a drink. Or just move close enough to
taste the water I craved so much right then. Just being helpless to even move underneath of the
faucet to catch a drip. Like a man in the desert chasing a oasis. FRUSTRATING. Every day
I woke up in St. Patrick’s Hospital staring at a little figurine of Jesus on a cross. Burning up
from the heat,started thinking I'm going to sue this place when I got better,because of
inadequate H.v.a.c.,but really it's just the nature of the injury.
Next came a dream about heading up a lighted tunnel and meeting what I would call angel-like
figures. It seemed cloudy and like I was floating, with familiar voices telling me I had to go
back. I did not want to leave that peaceful place for anything, only to go back to that lifeless
body. I was told I was not done yet, so really I had no choice. It was very disappointing to
come back.
So much of what I was dealing with now were the physical and emotional aspects of my
injury. The emotional part was not only dealing with this drastic change in my life because of
this injury, but also those I loved and cared about and how they were responding. I had all
these feelings. I never had been one to talk about my feelings, but now I couldn't’ have if I had
wanted to.
All this dreaming at night leaves me tired. Swinging in through the doors, is the physical
therapist. I'm learning the shifts now - when to be somewhat comfortable or when to fear for
my life. Some people scare me tremendously, while others provide such comfort. I was
being pulled in so many directions now.
I’m still having trouble communicating, but have been given a passing Muir valve to be able to
talk sometimes. It sounds so neat to hear my own voice again. That took some getting used
to. I had to breathe differently to use it. It meant the respiratory therapist deflating a cuff on
my trach and many steps to get it hooked up. I savored every moment I got to talk. This was
just one of the things my days entailed. There were tests, doctor visits, more tests, trying to get
weaned off of the ventilator, more episodes with the tilt table, therapists coming and going.
Everyone had their way of doing things. The nurses would come in every shift and raise my
blinds thinking I needed sunshine. The sun coming in would make me feel like I was burning
up from the heat. Finally a fan in front of my bed fixed that. Sunlight felt like fire. Everyone
did the room "their" way, changing things just when I would get used to it. Wondering what
kind of dream I am going to have that night. Then in would come Lisa, complaining about so
much stuff she has to do in a manila folder she always carried. The helmet and that damn
yellow folder,wouldn't go any where with out them. I later found that folder. It looked like she
never got anything done that we needed for our survival when I got out. Meanwhile, I hoped
that her inability to cope or follow through was only a result of her shock in what had
happened – that things would come together as she learned to deal with these drastic changes
in our lives. Sadly, I was wrong. So, I learned that Ativan would not only help me with my
anxiety from my physical changes, but the turmoil I was dealing with emotionally.
