What is “Normal?�
As the end of my ICU stay was nearing, I was happy to be getting closer to going home, but the individual care in ICU and the nurses there were great. I didn’t realize how great until I was moved later. Finally the day came when I was moved to the 5th floor, or “The Normal Floor.� They wheeled my bed up there, I’m guessing around 7 in the evening, and I was rolled into a room that I shared with another person. At this stage I was still so dizzy and disoriented, that I couldn’t even see my roommate as I was wheeled by him. You see when they removed the tumor, the severed my Vestibular nerve, or the nerve between my left ear and brain that is responsible for balance and it takes quite a while for the vestibular nerve on the other side of your brain to compensate. So anyway, the whole time I was in the hospital I was very dizzy and disoriented.
My first night in the normal room I was excited to get more than an hour of uninterrupted sleep, so my wife pulled the curtain for me to give me some privacy from my roommate, and I was ready for some sleep, until … The room started shaking, or so it seemed. This deep noise that was rattling my head and keeping me awake was my roommate snoring. Either that or a jet engine was lying in the other bed in my room. Remember, I’m deaf in one ear so this must have been loud. Anyway, I heard the nurse come in and wake him to take some medicine and I thought I could finally rest. I never saw this man, but from the moment he woke up he was complaining to the nurse. He wanted to go home, now, there was no way he was going to pay to get his TV turned on, he’s hungry, the phone is too far away, yada, yada, yada. This complaining went on from about 10pm until 2 or 3 am. The only reason I know that is that he said he was going to “just leave and drive himself home,� and the nurse said, “Sir, it’s 2 in the morning.� Anyway he left the room around 3, I’m assuming to go home and I had about an hour of sleep until I heard them bring someone else in. Again, I didn’t see the man, but I heard the nurse get him in bed and he was very polite and went to sleep. About 10 minutes later, all I could hear was vomiting and the nurse came in to change his clothes and sheets. This happened 2 or 3 times through the night, but when I finally woke up in the morning he was gone, so I’m assuming he got it all out. That poor man had a rough night, but I couldn’t help but wonder how someone in his condition went home, but I had to stay?
The first morning on the “Normal Floor,� the nurse came in to check my vitals, then put a bucket of water by my bed and handed me some soap and a towel and said “wash up.� What the hell was I suppose to do with this? I take showers, not bucket baths. I sat there for about 10 minutes wondering what the hell to do with this stuff and I just kind of got a wet soapy towel and wiped myself down. This is one of those moments when you feel really alone and frustrated. I was so weak physically that I couldn’t get out of bed, much less hold onto a towel or a wet bar of soap. After about an hour of sitting there frustrated, my parents and wife came in and helped me out. Being a pretty independent guy, it was very frustrating and humiliating to have to rely on family and nurses to help you with everyday things like eating, washing, brushing your teeth or even just putting your socks on or adjusting yourself in your bed.
Once I was dressed, some physical therapist came in and got me out of bed and into a chair. To the normal person, a chair is comfortable, but I had been on my back for over 2 weeks, and I had no balance, so not only was the chair extremely uncomfortable, but I felt like I was going to fall right out of it. I think I lasted about 5 minutes in the chair before having to get back into bed. It was too much. Sounds simple … it wasn’t. Luckily on night two I had no roommate, so I actually got some sleep. Now that I was out of ICU, I was able to receive cards and gifts, so I had a lot of new flowers and balloons to look at. I couldn’t focus at all, so my wife had to read me all the cards, but it was nice to know that so many people were thinking about me. Again, I started to feel motivated.
At one point while I was on the fifth floor I opened my eyes after sleeping and there was this priest hovering over me saying that one prayer “as I walk through the valley of the shadow of death� and in my head I’m thinking “dammit, I died,� but I didn’t, I guess he just thought that was an appropriate prayer at the time or something. I know it was meant to help, but it scared the **** out of me.
It’s now late October and I’m starting to wonder if I’ll be home by Halloween. Not that we do much other than pass out candy, but it’s the whole idea of having the freedom to do what you want. I was also missing my sister’s birthday (10/19), in which we would have probably just had dinner or something, but it seemed much bigger than that. All of the sudden it seemed like I was missing out on life by being confined to this hospital bed. Not knowing when you will see your own house again is rough and just then they tell me that I’m being moved to the rehab floor for about a week, so that’s when the frustration of being there and the depression of the whole ordeal really set in. The rehab floor is supposed to be a good thing, but to me it was just extending my stay. I spoke with Dr. LaRouere who said his goal was to have me home for the Michigan-Michigan St. game on 10/30, he’s a Michigan grad, me, a State grad, so while staying another week sucked, at least I had a date to go home and I could be happy about that.
Wheelchairs & Oatmeal
Up to the rehab floor I go, and I had no clue what that really meant. I figured there would be a bunch of people using those bars on each side of them to walk, you know, like you see in the movies. The whole goal of this floor is get people their independence back so there was much less dependence on nurses here. You get a wheel chair, and the nurses wake you up each morning around 6 with the bucket of water to wash, then you wheel yourself down to this room for breakfast and then you do 3-4 hours of therapy per day. The schedule changed each day, but everyday I had Physical, Occupational and Speech Therapy. Physical was all about getting my strength back and relearning to walk. Occupational was more about doing everyday things like brushing your teeth and taking a shower and Speech, besides working on your speech, which gets a little messed up after brain surgery, they also work on memory and reading and things like that. Basically elementary school all over again, but challenging for someone in my boat. In Speech therapy we actually worked on math problems and sang “row, row, row your boat,� yikes!
Physical Therapy was the toughest because you have no strength or balance and you’re working out your body. We did a lot of simple strengthening exercises, and worked on things like walking and stairs. That therapy helped me regain some balance and start using a walker to get around. We set goals the first day to accomplish before we could go home and mine was to walk, with the walker, from my room to the gym (therapy room). This was only about 500 feet, but remember, I can’t even get out of bed or stand up by myself yet. Anyway, my goal was to do that by Friday, it’s Monday, but by Tuesday night, I’m making the jaunt with my dad. My reasoning? The sooner I do this, the sooner I can go home. My therapist said that was “a lofty goal,� but I stuck with it anyway.
The week continued to pass and everyday was about the same. The only thing that kept me going was knowing that I’d be home by Saturday because that’s when the football game was. The days consisted of being waken up around 6 by a nurse who gave you a bucket of water and bar of soap and then laying there until about seven when the nurse would come help you out of bed and into a wheelchair to go down to breakfast. Breakfast was quite interesting each morning. You wheel yourself down to this room where all of the patients gather for meals. You wheel yourself up to a table and wait, and within 5 or 10 minutes, a nurse plops the tray of food in front of you. For some reason, I was eating oatmeal and yogurt every morning, neither of which is a favorite of mine. This was sometimes my least favorite part of the day for a number of reasons. First, I feel really alone. No visitors are allowed this early and it’s not easy to eat when you have no strength on your left side, you’re uncoordinated, half blind, half deaf, dizzy and overtired. More than a few times I just skipped the yogurt or the carton of milk because it was just too hard for me to open. It was also very frustrating because while everyone was very nice, I couldn’t really hear or see what was going on so I was almost forced to ignore people or not start a conversation because I couldn’t keep it going. I still tried to be polite, so I just said good morning to everyone and then tried to tuck myself away in a corner so I could work at my food in peace. When someone did try and talk to me I just kind of nodded and smiled having no idea what they were saying.
The whole thing was very overwhelming. It was almost like one of those adult ADD commercials when you just have 500 pictures and sounds flying through your head and you can’t concentrate on any one thing. All I could hear was people in the background, the overhead heating system and the radio they turned on every morning. This brings me to another frustrating part. Most of the patients on the rehab floor are older stroke victims, so being a 29-year-old guy made me feel out of place. Like I was a bit early for the nursing home party, but the more I observed, the more I realized that I was dripping my oatmeal down my shirt just like they were, which made me even more depressed. I felt like the whole prime of my life had been skipped and I was sent right to the deathbed part. One morning over breakfast, there was some yelling about what CD to put in … Half the room wanted Benny Goodman, the other half Post WWII Swing. Somehow I got pulled into that debate and had to admit that I didn’t know who Benny Goodman was and didn’t care much about the music. Finally I suggested Sinatra and the majority agreed. At least I knew a lot of Sinatra songs.
You look around a place like this and feel terrible. Stroke victims, amputees, brain and spine surgery patients. Everyone has a story and everyone just wants to go home. Most of us tried to hide our misery with a fake smile, but you could tell. All anyone could talk about was when they were going home, or when their family was coming to visit. Luckily my family was outstanding through the whole ordeal. They would often sneak up before visiting hours and hang out all day until they were kicked out. Probably not very much fun, but there was no way I’d tell them to leave. The highlight of each and every day was just sitting with my wife and parents as long as I could. When they weren’t there you really felt what loneliness is. I had gone from 29 to 92 years old over night. When I was alone, I’d often wheel my chair up to the window and just stare outside. The leaves in Michigan were changing color and falling, my favorite part of the year, but I haven’t been outside in weeks. If there’s one scary thought that goes through your head when you’re staring outside it’s that the world goes on without you, a very sobering thought when it comes down to it.
You somehow have to keep yourself motivated to keep working and get home. Getting home was my motivation. Walking down the hall felt like a marathon and simple 5 pound weights felt like I was curling 150 pounds. When I’m faced with any challenges, I always seem to make myself believe that “no one thinks I can do it,� and “they all want me to quit,� so I was using that to motivate myself. That’s how I was able to walk that 500 feet that night or in therapy sessions when they asked if I needed a break or water I always declined, even if my body was dead tired. They would always ask if I wanted to try something harder and while I really didn’t, I’d always say “Let’s do it.� A few of the therapist asked where I got my motivation from and I just said “I’m not motivated, I’m just scared to live like this.� Each day I did more and more, and even though I was working hard, my balance was still way off and I couldn’t shake the dizziness or instability.
