Six Months On (Episode 19) — The Roller Coaster Ride to Recovery
Moving from the ICU to my room on H6 was not only a milestone in terms of my prognosis, it meant that a new chapter was beginning in my journey. The demons that invaded my body were gone and the road to good health stretched out before me. I was still feeling the effects of the drugs but was becoming more lucid everyday. I was starting to notice how much different I felt now than before this whole thing started.
A couple of years ago I hurt my back carrying a box of books upstairs at home. I didn’t lift with my legs…because NO ONE lifts with their legs. People who say they lift with their legs are are the same people who lie about flossing everyday. The next day I woke up with something I had never experienced before: back pain. I took ibuprofen, tried a little heat and a little ice but nothing helped. It started to effect me in more ways than I ever thought it would. It hurt to stand and it hurt to walk. I could feel the muscles in my lower back tense up when I was standing or walking. This would cause me to sweat buckets. It started a circular equation that went like this:
More pain = less movement. Less movement = more pain, and so on and so on.
It also began to effect my work. At the time I was working for a nonprofit with a small staff as Network Administrator. We had a lot of events and trainings that required carrying, moving and leaning over a lot of equipment. All of which caused me a great deal of pain so I tended to find other things to do and left these tasks to the rest of the staff. I didn’t want to be the “I have a bad back” guy so I just stayed busy doing other things. I believe this caused some resentment from some of my coworkers as it probably looked like I just didn’t want to do these things or that I thought it was beneath me. Nothing could be further from the truth but pride kept me from admitting that I just couldn’t do them.
Muscle relaxers, physical therapy, chiropractor, etc. Nothing really helped. Walking became a punishment. As you can imagine this all led to me getting bigger and bigger. I knew that what was really wrong with my back was what I was carrying on my front.
As I mentioned early on in this journey I clocked in at the ER at the highest weight I had ever been. I had just started to take a serious look at what my options were, including surgery. I actually had an appointment set for early January to talk to a doctor about this. I was sick and tired of being sick and tired. But a different fate awaited me and Susan had to inform the doctor’s office that I wouldn’t be able to make it as I had contracted pneumonia.
The Most Expensive Weight Loss Plan Ever
As you can imagine, being on IV and then tube feeding for about 3 weeks doesn’t really pack on the pounds. Add to this the fact that the nurses spent a few days relieving my body several liters of fluid and what you get is what Susan described was like watching a balloon deflate in front of your eyes Even after I started getting real (OK, hospital) food I continued getting smaller. The end result was that I had lost 55 pounds in less than a month. Not the method I would have chosen to lose weight but it happened nonetheless.
Lying in bed for about 3 weeks straight had also given my back the time it needed to heal. It took a couple of days to realize it but all of the pains I had before December 18th were gone. I was a new man. I was ready to get out of the bed start doing all the things I missed out on for the last couple of years. There was only one problem: I couldn’t walk.
While the time in bed had fixed my back, it also caused me to lose a lot of strength and muscle mass. At first I knew I felt a little weak but since I had so many cords attached to me and I was being tube fed I had no reason to lift my hands or arms for anything other than getting blood drawn. A couple of days went by before a physical therapist came by and showed me how weak I really was. I told her i wanted to try to get out of bed and she said we should start with getting me to the edge of the bed and let my feet hang off the side. That took 30 minutes and that was with the help of 2 therapists. I had a long road ahead of me and it scared the hell out of me.
Rehab would be the great unknown for me. I had always been physically strong and now I was not only not strong, I was incredibly weak. This was uncharted waters for me and I had no idea how I would respond. Would this be permanent? If not, how long would it take? If I was permanently disabled, how would I ever lead anything close to a normal life? My dreams turned to a depiction of how my life might be and I began to think of all the new technology out there that helps people with disabilities lead productive lives. Surely these would help me as well. I asked for my phone to start Googling this and then I discovered another problem. I couldn’t type either.
It wasn’t so much a matter of strength. In this case it was hand-eye coordination and dexterity. My hands couldn’t operate the phone or even hold it for very long. When something on the screen did show up my depth perception was off. I couldn’t look at the screen for long without getting a headache. I use my phone and computer screens in my job everyday. How was I going to be able to work?
Looking back now I wonder if the lingering effects of the drugs was were a blessing as they gave my brain something else to do besides sitting around wondering whether or not I would ever walk again. After spending my nights walking around the campus and even to downtown in my dreams, I would wake up thinking that I really could walk if only someone would help me get out of the bed. It got to the point that Susan wouldn’t leave me alone in the room for fear that i would try to get out of bed. I messed with her a little on this and she would get pretty frustrated with me. (I think at one point she came very close to asking them to shove the tube back down my throat.) But in all honesty there were times when I would have actually tried it if given the chance. Knowing what I know now about how incredibly weak I was I can also say in all honesty that I would have fallen flat on my face and probably broken something.
Between the crazy dreams and my insistence that they were real and my eagerness to get out of bed, I was becoming a bit of a pill. The nurses and those around me were very patient and kept me on the path to recovery. The doctors and nurses said that once I turned a corner, things should progress quickly. That turning point came unexpectedly in the middle of the night.
A Moment of Clarity
A few nights after I came off the ventilator we went through the usual ritual of getting me to sleep. I remember having trouble getting to sleep but once I was out I slept pretty soundly. Sound enough to be fully immersed in the dreams I was having. On this particular night I was dreaming that I was about an inch tall and had fallen into an open box in the cargo hull of a plane that was flying to some unknown destination. I began to fret because no one knew I was in there and was so small that no one would be able to hear me yelling to get me out of there. I must have been stirring in my sleep because at about midnight Susan came over to the bed and asked if I was okay. She asked if they had come in to give me my blood pressure medicine that was being administered every six hours. I told her they hadn’t and she said they would shortly and went back to sleep. I returned to my dream and began to feel that I would be lost forever and then I remembered that there was an array of wires attached to me and that the nurses were monitoring me. At some point I started fidgeting with the wires in an effort to get someone to come check on me. When they did come in I was very disoriented. I knew I was in a bed and the nurses were coming in but my dream mixed with reality and I thought that we were on an airplane that was equipped for transporting patients. I was so disoriented that I didn’t even know who I was or that there was another person sleeping in the room just a few feet away.
The nurse came in and checked all my wires and then proceeded to check my vitals and give me my medicine. Susan woke up with all the commotion and came over to check on me. I looked up and her but didn’t know who she was but I knew she was pretty and I felt that I could trust her.
“I don’t have any form of personal identification on me.” I told her. “Nobody will know who I am.”
“Well, we’ll get you some,” she assured me.
“No one will know where I’m suppose to go or who I’m married to.” I believe at this point I was fishing for information about who I was and who she was.
“Well, I’m married to you and I’ll know.” She replied.
A light bulb went on in my head. “Oh, yeah. That’s right. You are married to me.”
It was in that moment that the cloud in my head parted and I knew exactly who and where I was and what I was doing there. I knew who Susan was and what she was doing there. It was a moment when the dream world and reality parted ways and the road ahead was clear. The dreams, crazy talk and my reluctance to do what I’m told disappeared and never returned. I was alive, healthy and loved and that was all that mattered to me from that moment on.