My First Year
On October 1, 2001 I was on a casual bike ride with a couple of my friends. Just as we were about to finish the ride, I made a turn that would change my life forever. I was going a little too fast so I ended up on the left side of the road, headed straight for the front end of a truck. At that point, I made a split-second decision to take the curb instead of the vehicle. Unfortunately, it was the wrong decision. I took the curb straight on - my bike stopped but I did not. I went over the handlebars and landed on my head. Blackness, paralysis, and the strange feeling that my legs were floating in the air were the only things that I can remember.
My friends administered CPR and called an ambulance. I was first admitted to the emergency room and then taken to the intensive care unit at a local hospital. Evidently I was conscious, but I do not remember anything from the first three days. When I became aware, I found myself strapped into a striker frame and unable to move. I also had a halo attached to my head with four bolts screwed into my skull. There were weights hanging off the back of the halo to help keep my neck aligned. I could not talk and I was breathing with the aid of a ventilator that was hooked up to my newly installed trach tube.
I spent the month of October in the ICU. It was the longest month of my life. I didn't realize the full impact of my accident - I guess I was in a state of denial. After all, maybe I would just wake up and the whole thing would turn out to be just a bad dream. But, that was not the case. The fact was that I had a spinal cord injury and I had to deal with it.
During my second week, my wife Lois and I had a meeting with one of the resident neurosurgeons. He stated that I could have surgery which would fuse my vertebrae. This would eliminate the need for my halo by stabilizing my spine. At the time, that sounded like a great idea. I was really tired of wearing this metal framework around my head, neck, and chest. So, a couple of days later I went into surgery and had this operation performed. When I came out of surgery, all I had to wear for stabilization was a soft collar.
By this time, I was in a hospital bed instead of the striker frame. I was moved by my nurses on a regular basis to prevent bedsores. I also tended to drift down in the bed, so every few hours I had to be moved up towards the head of the bed. On one particular shift, a pair of nurses that I hadn't seen before showed up to move me up in the bed. They were young, but I didn't think too much about it. Before I knew it, they moved me up in bed without supporting my neck. My head was bent backwards as they moved me, and I heard a pop from my neck that scared the crap out of me.
Lois came back into the room within a couple of minutes from this incident. She could tell from the look on my face that something was not right. She asked me what was wrong and what she read from my lips was "I'm really pissed off!" I then went on to explain what happened. Well, at that point, Lois's evil twin emerged. Soon, everybody in the ICU was aware of what happened. Before long, I found myself being x-rayed yet again. Sure enough, what they found was that there was pressure on my spinal cord because of misalignment of the spine. The end result was that I found myself with another halo and 40 pounds of traction hanging off my head. I was not a happy camper.
I had a lot of visitors that month. Relatives and friends showed up every day to wish me well. I tried to talk to them, but for most of the month I had no voice. Many of them tried to read my lips, but for the most part that was just a frustrating experience. Luckily, there was one person who became proficient at reading my lips, and that was my wife. She was their most of the time and helped serve as an interpreter to my visitors. Towards the end of the month, a speech therapist visited me on several occasions. By removing air from the cuff of my trach tube, I was able to talk in a low whisper. People could finally hear me talk, even if they had to come very close. My friend (and vice president of my company) John O'Neill even went to the trouble of setting up an amplification system so my whispers could be heard throughout the room!
We tried a couple of other experiments in communication before I could talk. One of the most successful was done with the help of my brother, Mark and my mom. Mark purchased a laser pointer and modified it so that I could hold it in my mouth. My mom purchased a piece of posterboard and wrote the alphabet in large letters. Lois hung the alphabet poster on the ceiling. I was then able to spell out words using the laser pointer. It was slow going but it allowed me to get my thoughts out!
My lung capacity and ability to breathe were severely affected by the accident. I was ventilator dependent 24 hours a day. I also could not cough up any lung secretions. While I was still in the striker frame, every two hours I would be strapped in and turned upside down. This would help to drain my lungs and sinuses. The nurses also used a suction machine, in which a small tube was inserted through the trach and down into my lungs. To say that this was an unpleasant feeling is an understatement, and this had to be done several times a day.
Lois spent a lot of time with me in the hospital. Every day I anxiously waited for her to come in the room. She helped me get through some of the toughest times. I knew our love for each other was strong, but I guess I never realized how strong it was until this accident happened. This first month at the hospital would be only the tip of the iceberg. Her love, dedication, and strength would be demonstrated many times over during the following months.
On November 1st, I was transferred to Kessler Rehabilitation Hospital in West Orange, New Jersey. I rode down in an ambulance and Lois followed us. We chose Kessler because it was rated one of the top rehab centers in the nation. We both looked forward to this move. I didn't really know what to expect, but I knew it had to be better than laying in bed 24 hours a day.
The first day there was kind of traumatic, especially after the three-hour ambulance ride. I was x-rayed, blood was drawn, and my assigned doctor evaluated my movement and sensations. I was then placed in a room with three other spinal cord patients. They all had visitors and they all had their television sets going. (So much for my nice, quiet, solitary room that I had at the hospital.)
The respiratory therapist showed up about 7:00. The first thing he did was to remove most of the air from my cuff so that I could talk. It felt like a miracle! Although my voice was weak, and I could only get a few words out at a time, it was great to be able to communicate. He also spent about two hours adjusting the ventilator so that it felt comfortable to me. For some reason, I just had a hard time adjusting to this new machine.
I had to learn a new way to get rid of my lung secretions. Kessler used a machine that sounded just like a vacuum cleaner. A hose blew air into my lungs for a few seconds. This would trigger a cough reflex and then the therapist would switch the machine to suction mode. If all went well, a nice hunk of phlegm would be sucked out of the lungs and into the tube. This may sound gross, but it was much less invasive than the suction machine used at the hospital.
Finally, around 11 o'clock, all the visitors had left and the room had quieted down. I was exhausted. I laid there in my new room wondering what the new day was going to bring. I was looking forward to getting some sleep, but it wasn't going to come easy. I finally was given some medication to help me sleep. It knocked me out for about three hours, but then I woke up with a drug hangover. Needless to say, I did not feel very rested the next morning. In fact, it took me over a month before I found the right combination of drugs to keep me asleep through the night.
Through Kessler, Lois met a wonderful spirit named Barbara who opened up her home for us. Barbara set up a beautiful guest room for Lois. She entrusted Lois with a key to the house, which allowed her to come and go as she pleased. Every morning there was a fresh pot of coffee and a glass of juice all set up. (Barbara did not even drink coffee!) As a result of her generosity, Lois had a wonderful place to stay that was only 10 minutes from Kessler. Barbara made it possible for Lois and I to be together during my four month stay.
The next day I started learning what life would be like at Kessler. There were many new routines that I would have to get used to. The morning goals were to get dressed, get up in a wheelchair, and go to physical therapy. Somehow, my aide managed to get a shirt on over my halo. I had to have my legs ACE wrapped to prevent a loss of blood pressure once I got up in the chair. Finally, after about a half hour, I was fully dressed.
The next step was to get me in the wheelchair. Sounds easy, doesn't it? It took two aides to lift me into the chair. This was the first time in over a month that I came even close to being upright. I immediately started feeling dizzy and lightheaded. It was not a pleasant feeling. One of the aides reclined the chair and put a pillow behind my head to help me feel better. At this point, it was time to go to therapy. My nurse unplugged the ventilator from the wall (it had battery backup). The nurse pushed my wheelchair out of the room while Lois pushed the ventilator cart right behind me. We were ready to make the trip to the other side of the building and make my first entrance into the therapy gym.
Physical therapy was scheduled from 10:30 until noon, Monday through Friday. Therapy consisted of stretching my legs (range of motion) and doing a few resistance exercises. I had some movement in my legs, so my therapist chose exercises that would strengthen and enhance these moments. It wasn't much, but it gave me some hope. Once therapy was over, I was transported back to my room.
At 2:30, I was back in the gym for occupational therapy. The first day consisted of a long interview and evaluation. One of the questions that I remember specifically was "What is your goal?" The question caught me off guard. I thought the answer would be obvious - get back to a normal life. I guess I still had not fully realized what the long-term effects of my injury were going to be. I would have to narrow down my expectations and try to work toward a single goal while at Kessler. I finally answered the question by saying "I want to walk again." That was a very lofty goal for someone in my condition, but at the time I believed that I could be walking within a few months. No one had bothered to explain to me the full implications of a C2 spinal cord injury.
At Kessler, patients were expected to take showers three times a week. So, at the end of my first full day at Kessler, it was time for my shower. This was no simple task. The first step was to get undressed. I also had to have the sheepskin removed, which was used as padding on my back and on my chest to protect my skin from the lower portion of the halo. It took two people to accomplish this task. I was then transferred to a stretcher and taken to the shower with the ventilator in tow. After my shower, the sheepskin had to be put back in place. The whole process took almost two hours!
During my second shower, Lois noticed a bloodstain on the sheepskin. After the shower, my attending nurse investigated and found a pressure ulcer underneath the back brace of the halo. It was about 1 inch in diameter. The wound had penetrated down to the spinal column. My physiatrist was called in to take a look. Within a day, a neurosurgeon was called in. After looking at my x-rays, he determined that the halo was doing me no good. Besides the fact that it had created a pressure ulcer, there was still pressure on my spinal cord. He immediately removed the halo and strongly suggested that I undergo a second surgical procedure to remove the pressure.
Surgery was scheduled one week later. In the meantime, I was confined to bed. The pressure ulcer was treated with standard procedures. I was told it would take a long time to heal. My other concern, of course, was my upcoming surgery. I was frustrated, angry, and scared. While at the hospital, I should have insisted on being transferred to a hospital with more experience in spinal cord surgery. But I did not know any better.
One week later I was transferred to University Hospital in Newark. The next day I had my surgery. It lasted 12 hours. The first three hours were spent removing a bone fragment from my spinal cord. The surgeon accessed my spinal cord through my mouth and throat and had to use a microscope. I was then turned over and he proceeded to perform the fusion surgery. It took me a week to recover enough to be sent back to Kessler. Lois was with me the whole time giving me support. The hospital even gave her a room to sleep in.
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Five days later, I was back at Kessler. It was time to finally get into the Kessler routine. After a few days, I started going to the rehabilitation sessions. Physical therapy still consisted of mainly stretching (range of motion) and some assisted leg exercises. I did have some movement in my legs - mainly pushing out. At occupational therapy my arms, hands, and fingers were stretched. There was not much else that could be done - I had virtually no movement in my upper body. The only thing I could do was shrug my shoulders.
From the time of my accident, I was fed through a stomach tube. Finally, at the end of November, I was allowed to eat pureed food. Rick Bunting, a good friend and fellow bicyclist, happened to be visiting that day. He did me the great favor of going to a local ice cream shop and picking up a real chocolate milkshake. It was a wonderful thing! The joy |
 On my way to PT with friend/aide Camara giving me a push. |
Finally, by mid-December I was allowed to eat whole food. I had looked forward to this for long time. Unfortunately, most of the meals that were delivered failed to live up to my expectations. In fact, some of them were just plain awful! Lois's daughter, Esta, brought us some wonderful meals once or twice a week, which helped maintain my appetite for food.
The pressure ulcer on my back was still not healing. I was told by a visiting plastic surgeon that surgery would drastically speed up the healing process. So, I was off again to a hospital for another operation. I arrived at Kessler a day later ready to get back into the swing of things. Even though the wound was sealed, the skin was still very tender. I still had to be extremely careful about putting too much pressure on my back. While in bed, I had to stay on one side or the other. Even though it was a fairly simple procedure, it still took me a couple weeks to feel recovered.
The next two months at Kessler were a little better, but it was still very tough. My neck was almost always sore from muscle stiffness. I was trying to wean away from the ventilator, but I couldn't sleep without it. My lung capacity was still very low, so I had a hard time talking to people. Although I did my best to keep a positive attitude, I still couldn't help but slip into short periods of depression and self-pity. There were many days that I felt sick and weak - I remember feeling like I could deal with the paralysis, if only I could feel normal otherwise.
There were a few bright moments. One evening while Lois was doing some range of motion exercises, I lifted my right forearm about six inches off the mattress. For us, this was a huge breakthrough! Lois ran out and told the nurses and they all cheered. This was the first sign of movement coming back to my arm. Over the next few weeks, I gradually gained more strength and movement in my right arm. About three weeks later, I found I was able to drop my right arm over the side of my chair and lift it back up on to my lap tray.
About the first week of February, my physical therapist said to me, "Tomorrow we're going to walk!" I tentatively thought OK that's fine, but exactly how am I going to do that? So the next day we started the PT session by wrapping my ankles with ACE bandages to stabilize them. My therapist then took two boards and ACE wrapped them to my legs to keep my knees locked in place. He then placed me in a rolling standing frame to keep me upright. Then, with the help of two therapist and two aides, I attempted to walk across the gym floor. It wasn't very pretty, but it was quite a thrill to be upright and moving! I had a very hard time moving my legs, so I did need some assistance. I did manage to take a few steps under my own power.
Time seemed to be flying by. Even though I hated being at Kessler, I was very apprehensive about leaving. How would Lois and I handle this when we got home? Would we be able to adapt? I just didn't know. Well, before I knew it, it was the end of February and it was time to go home. The staff at Kessler did their best to prepare us for our return home. They also made sure that I would have all the equipment and medications I would need when we returned. The OT staff taught Lois how to transfer me to our Volkswagen Jetta. On the morning of February 28, we were on our way back to Bainbridge.
Returning home was a very emotional experience. It was the first time I had seen my house in five months. I looked around and immediately started thinking about all the things I used to do in and around the house. Gardening, mowing the lawn, cooking, playing music, maintaining the house - these were just a few of the things that I would not be able to do in the foreseeable future. I could not help feeling depressed.
On the bright side, our friends and neighbors made sure that the house was ready for our return home. The Rotary Club built an entrance ramp for wheelchair access. A friend of ours modified doorways and installed a walk in shower. The house was totally clean and there were flowers on the kitchen table. We found several ready to eat meals in the refrigerator. This all helped to make our new life a lot easier. We were very grateful.
Speaking of being grateful, Lois and I would like to extend thanks to many other people as well. The cards and letters we received were always a joy. The people that prayed (and are still praying) for us every day gave us great spiritual comfort. My business is still going strong because of the hard work of my employees. We feel very blessed.
It is now October and I am one year into my injury. Lois and I have accomplished a lot in the seven months that we have been home. She has been my primary caregiver, physical therapist, nurse, wife, and best friend. I don't know how I would do this without her. As a result of her dedication and effort, I am in relatively good health and getting stronger all the time.
I have been going to outpatient physical therapy three times a week, but most of my physical therapy is done at home, with Lois as my therapist. We have equipment here that cannot be found in any local PT facility. I use a converted spinning bike every other day for about one hour. I also have a hand cycle, which allows me to exercise my arms. To work on my goal of walking, I use a treadmill in conjunction with a device called a Lite Gait. This is a hydraulic lift which holds me in a standing position using a parachute type harness. Although it is very difficult, I am able to walk at a very slow pace using this equipment. We also do various assisted exercises in bed and in the wheelchair.
I have owned and managed my own business since 1980. While I was in the hospital, my employees stepped up to the plate and did what they needed to keep the business running. They did an excellent job! I started going to work again in April and I'm now up to three days a week. It's good to be back working with my employees and customers. I spend most of my workday managing, answering questions, solving problems, and working on the computer. (I use Dragon NaturallySpeaking voice recognition software to operate my computer.)
So, what's it like after one year? I'm still heavily dependent on other people (especially Lois) for basic daily functioning. I cannot get out of bed, shower, go to the bathroom, eat, or even scratch my nose without help from another person. I miss playing music, running, biking, cooking, and even just driving to work. However, in many ways I am very lucky. I have movement and feeling throughout my body. I can stand for up to three minutes with balancing assistance. I believe that with a lot of hard work, I will walk again. My hands and arms, while still not very functional, are gaining more movement and strength all the time. I have enough strength and dexterity on my right side to operate all the controls on my power wheelchair. I have accomplished a lot in the past year and I feel that my progress will continue. I feel that my only choice is to keep a positive attitude and do what I know I have to do. That includes intense exercise, keeping connected with other people, eating well, and pushing my boundaries. It's going to take a lot of patience and hard work, but ultimately I will accomplish much more than what statistics predict. I'll keep you posted!