I Have So Much To Say, and Yet I Cannot Speak
It was a typical Monday morning in late summer. I had started the day with chores in the Barn and followed with a few hours in the Recording Studio. The lazy afternoon was so pleasant that I decided to give up the rest of the workday and fly one of my radio-controlled planes in the pasture. I had enjoyed exceedingly good health all my life, except for an occasional bout with a cold. After reaching 50, I was more vigilant, but there was never much need to see a doctor other than an occasional physical. My cholesterol and blood pressure were at normal levels, and I got plenty of exercise here at the farm. I thought I had nothing to worry about, but that was about to change.
I went to bed about ten-thirty that night, read a little bit and went shortly to sleep. From this point on, I remember little about that evening, which, in retrospect was God's mercy. It was about 3:30 in the morning. I remember waking up, and feeling really weird – in a way that I had never felt before. I rose and headed for the bathroom. After splashing some cold water on my face, the world started to spin and I dropped to the floor. I didn't know it, but a massive blood clot had just entered my left carotid artery, working its way toward my brain. After lying on the floor for an indeterminate amount of time, something awakened Vicci, my wife, who quickly called 911 thinking perhaps that I had suffered a heart attack. I have vague recollections of struggling unsuccessfully to get to my feet – and a feeling of bewilderment as to why the right side of my body would not function. Soon the paramedics arrived to take me to the hospital. I remember one of their faces staring down at me, but then I lost consciousness.
I was rushed to the Emergency Room, and from there to surgery at about seven o'clock. The surgeons strove to keep my arteries open, with some success. Two stents were placed in the blood vessel. Eventually I was to find out that, for a time, my life hung in the balance, but there on the operating table the balance swung in my favor. Despite the successful surgery however, later tests showed that a second blood clot had again blocked the carotid artery. There was not an attempt to remove this one – there was just too much mass of coagulation. To this day it remains completely blocked.
For the next three and a half days, I knew nothing. I was in a black vacuous void, lacking sound, sight, and feeling. Even when we are in normal sleep, we still have a sense of “self-presence.” There is an awareness that though we are not conscious, we still exist. I was nowhere, totally beneath any level of consciousness. I began waking up, as if in a fog. I could see shadowy figures moving. My right side felt dead, and I couldn't speak. There had been dozens of friends and well-wishers in the emergency recovery room, but I can hardly remember their presence. Among them was Rob Raynor, my best friend from Georgia. He would play CD’s of my favorite music for me, even when I was sleeping. Many of my friends were there praying for me, and they had notified many others that I'm not acquainted with who joined them in prayer.
I still didn't know what had happened to me. Unfortunately, in the days to follow, it did begin to dawn on me. My wife had been with me throughout the ordeal, and she began trying to tell me what had happened to me. She told me that I had suffered a stroke, and a very serious one. Initially I couldn't move my right arm or hand, but over the next several days I began to show some improvements such as wiggling my fingers and toes. My right leg was recovering more rapidly, and eventually I was able to stand upright. At one point, I remember Vicci was in the room, and one of my Doctors was holding up a small whiteboard on which he drew a picture with a marker. He was attempting to explain what had happened, and why that there was nothing more (surgically) that they could do for me. My mind was still foggy, but I understood what he was saying even if I couldn't comprehend the details.
The next day I had another visitor – Phil Ehart, the drummer for “Kansas.” He had flown up to Topeka when he had heard what had happened to me. I recall that he took my hand and said something to me, but I still was not able to properly respond. Also, there were many friends from Topeka Bible Church who came, as well as members of my family. Later, Vicci told me that I had a constant stream of visitors, most of whom she had to (sadly) turn away. I don't know what the Doctors expected regarding my recovery, especially with that artery still blocked. I knew little about strokes – just what I had read, or heard from friends and family. I knew they were serious, even life threatening. I suppose, giving the nature of the malady, that anything was possible. Some recovery could take place, or none at all, but that was now in God's hands. Still, the improvements came, but it was tremendously frustrating, I began to be able to say a few understandable words, and I could now, with assistance, stand and walk some cautious steps. Therapists were now visiting me regularly and helping with speech and physical therapy. Some of my thought processes and memory were coming back. I remember desperately wanting to get better and be able to go home, but that was not yet to be. At one point Katy was wheeling me around the hospital in a wheelchair. Just to break up the monotony, I got her attention, and as we were nearing the elevator I whispered, urgently, “Katy! Katy! Hurry- let's make a break for it!!! Get the keys, let's get OUT OF HERE! Break me out!!”
After eleven days in Stormont Vail Hospital, the decision was made to move me to a Rehab facility. Several different places were discussed, but it was decided that I would be moved to Madonna Rehabilitation Hospital, a very respected clinic in Lincoln, Nebraska. I wanted to stay in Topeka, but I certainly was in no position to protest. Vicci wanted me to have the best care. After one more (rather lengthy) blood test, they loaded me in an ambulance and off I went. The scenery on the way up to Lincoln was very refreshing to me – the first I had seen in a long while. The clinic was very nice. I arrived late in the afternoon and was checked into an (almost) elegant room, right next to the dining room. At the call to dinner, I got up and tried to walk to the table, but a nurse stopped me. I was not allowed to walk to the dining table. I had to “graduate” into walking independently. They were afraid that I would stumble. The rest of the people were in wheelchairs. Most were considerably older than I, and many were obviously fellow stroke victims. You can usually tell them by their faces. I remember thinking that most of these people were hurting much worse than I. There wasn't much conversation at the table, presumably because of our shared vocal problems. The meal was very good, but I noticed, really for the first time, that I had great difficulty holding the fork. I had previously been fed by a feeding tube, and later by the nurses.
The therapists began early in the morning, with a series of tests. From morning until late afternoon, this was to be my schedule for the next three weeks – speech, occupational, and physical therapies. The staff were all very nice. I even began to enjoy the therapy a little, as long as it got my mind off of the real implications of my situation. To start off, I was seated at a table and one of the therapists emptied a jar of pennies in front of me. She said “Pick them up.” I instinctively reached out my left hand, since it was the only one that worked. She quickly, but gently slapped my hand and said “No, use your right hand.” Just as I dreaded, I could not pick up even one penny. It was also extremely disturbing to me to have to re-learn the English language. I had not realized it, but I had been speaking “Stroke-Language.” It was almost as dismaying, to say the least, as finding out that my right hand was not fully functional. Everyone assured me, however, that I was making great progress.
After the first week, we drove to Topeka for my first brief visit to a familiar place. My home seemed welcoming, but unfamiliar and strange in the way that places do when you've been gone. Still, I relished the time. When we returned to Nebraska, one of the more bizarre events of my ordeal took place. Since I was now on out-patient status, we were staying in a local hotel. I was about to go to sleep when suddenly my thoughts turned to the Bible. There was a Gideon Bible on the nightstand next to the bed. I picked it up, and I was nearly frantic when I realized that I could not think of a single verse, nor any of its content. I could think of none of the names of the Sixty-six books, no names of Bible characters, none of the stories, nothing! I was nearly in panic when I asked Vicci to grab the Bible and read something to me – anything. With a puzzled look, she opened the Bible and began to read from John Chapter 6, the story of Jesus feeding the 5000. After thirty years of personal Bible study, and teaching adult classes, I was now hearing it for the first time! It was such a strange sensation. There was a faint air of familiarity about this story she was reading, and yet it was all new. What a peculiar thing, that a stroke can destroy a portion of the brain, and be that selective. I had panicked, because I instinctively knew how important it was. This Jesus I was hearing about was soothing, and I was eventually able to go to sleep. (Fortunately as of this writing, my Bible knowledge has returned.)
I returned to the clinic for two more weeks, and continued to improve and grow stronger. One day I discovered that there was a Piano in an open room on the second floor. I had not been thinking much about one of my greatest fears – not being able to make music. I sat down at the Piano, my right arm in my lap, and played a few figures and scales with my left hand. Then came the great test. I lifted my right arm and played a simple scale, although somewhat haltingly. I was surprised that I was even able to press the keys. However the real surprise happened when I tried to play with both hands. I found that I could play with right or left hand independently, but not with both hands simultaneously. I just could not do it. Initially I felt tremendously frustrated, and then fearful, but the Lord gave me a peace about it. I decided it would do no good to worry about it, and it would be best to leave my future in His hands. After working at it repeatedly, there was some progress. Katy was witness to this. She says “It was miraculous in that it's how your brain was remodeling in front of us. It shows rewiring and your tenacity to never give up.”
After three weeks it was time to come home, and transfer to another Rehab Hospital in Topeka. I left Nebraska on a Friday, and was to enroll in the outpatient clinic in Topeka on the following Monday. I would be staying at home! The first night at home, I was awakened by a loud crashing, followed shortly by someone moaning. Startled awake, I lay there thinking I was dreaming. I got up and went to the bathroom, the same one in which I had the stroke, and I found Vicci lying in our sunken bathtub. I stared at her for a moment thinking “what in the world are you doing?” before I managed, with some difficulty, to get her back to bed. She had been disoriented from spending the previous night in a motel room, and stumbled and fell. I knew she was hurt, but I thought it was just bruises. The morning told a different story. Vicci could move, but only with great pain. My daughter Kate, who was staying with us, called 911. Here was I, partially disabled and unable to drive, and now my wife was facing a trial of her own. I began to feel a bit like Job in the Bible. The ambulance took her to the same hospital that I had been taken to, where we found out it was not bruises, but a fractured spine. After a painful night, she was scheduled for surgery the next day – with the same doctor, Dr. Allen, who had operated on me. Everyone was stunned that we were back in the hospital again, and this time for my wife. We sent out prayer requests – this time for Vicci.
They performed the surgery, a relatively new procedure called Vertebroplasty. They use a balloon and a type of cement to rebuild her vertebrae. There was no incision – it is done with a Laparoscope. After one more night in the Hospital, she was home, and feeling nearly normal. I couldn't believe she was back home after breaking her back. The doctor said that were it not for this type of surgery, she would have been months recovering. I thanked him for his work on her, and myself. I felt that we had narrowly escaped a calamity. Vicci's incident had fallen right on the day that I had an appointment to enroll in the Rehab program, so it was delayed, but I started it the following week. The clinic was similar to the one in Nebraska. They tested my hand for numbness, as well as a full battery of other tests. The various therapies continued – as did the improvements. I was basically aware that I was slowly getting better, but I really didn't grasp how much I was improving. People that I spoke to on an occasional basis always remarked about how much better I was speaking. The change was so gradual, that I could scarcely notice it. Over time, the feeling was coming back to my hand, at least partially. I finally sat down at my Piano, and suddenly I could play with both hands! It was nowhere near my former ability, but now I had hope. As the days have passed, my playing improves slowly – I can even play the Guitar! (Although I must use a thumb pick.)
There are some remaining speech problems, and I have trouble with Neuropathy in my right side. It has been a long and hard struggle, and there is still a ways to go. I did not know it at first, but this stroke was extremely serious. I just now am finding out how serious. My Doctor, after conferring with several other physicians including a hematologist, told me that they thought what had caused the stroke was a blood disorder called “antiphospholipid syndrome.” He said that it was unlikely that a physical exam would have revealed it. It is a type of auto-immune disorder, and he informed me that I must be on blood-thinner drugs, presumably for the rest of my life. I was not pleased about having to take Coumadin (better known as Warfarin,) but I left his office resolved to take whatever medicine they recommended. More significant is what my Neurologist, Dr. Welch, told me. He had not seen me in many weeks, in fact since the days in the emergency room in the Hospital. When he walked into the room, I jumped to my feet, held out my hand, and said “Hi, Doc!” It would be hard to miss the look of astonishment on his face. He was clearly pleased with my progress, but then he told me “Mr. Livgren, you had as bad a stroke as a man can have.” He said “Once in a while, a Doctor gets to see someone like you.” I had been getting comments like this all along, but I was just now starting to get it. Clearly, something was going on. I should, by all rights, be either deceased, or confined to a wheelchair, yet I am not seriously disabled. The comment was made that I was “like Job,” yet Job received back all that he lost and more besides.
I have come to believe that my Father in Heaven has once again shown us His kind mercies. I have many times been the recipient of His mercies before, as when He saved Vicci from her head injury in 1998. Now, He has saved me. He exists, and he hears the prayers of His people. I know I am nothing special. I know that sometimes there are good, prayerful people whose prayers are not answered, for which I have no explanation. He is the Lord God and mercy is His to give, and He gave it. Throughout this whole ordeal, I somehow knew that it was going to be alright. I felt a kind of calming presence, the presence of Christ, telling me that I need not fear. I pray that I be fully recovered, but if not, then whatever the Lord gives me is enough.
Addendum
In May of 2011 I was contacted by Stormont Vail Hospital, and was invited to attend a “Stroke Conference” that they were hosting. Many Doctors and Nurses, and well as people from Kansas Rehab Hospital would be attending. Dr. Allen, who had done my Surgical procedure, would be one of the featured speakers. It would be held at the Pozez Education Center Auditorium in Topeka. The star of this show was to be, you guessed it – me. Vicci and I were seated among all the Doctors and Nurses. As we began listening to Dr. Allen make his presentation, the lights dimmed and a Movie screen was lowered. He showed the audience several charts and graphs which had all sorts of Medical information. The terminology was way over my head, but I understood the essential message – I had been in a very precarious state.
Then came the coup de grâce. Suddenly a very large color 3D image of a skull appeared on the screen. It was slowly rotating, while alternating on the horizontal and vertical axis. Dr. Allen said “This is the image taken of Mr. Livgren's....” That's as far as I got. His words all became blurred. I was stunned. No man should have to see an image of his own skull. Ever since I was a little kid I have not liked skulls. To me, they represent death. Instinctively, I turned my head away, but curiosity got the best of me. I looked at it again, timidly. Now I was transfixed on this image. As I recovered my senses, I began to hear what the Doctor was saying. “As you know, Yellow represents healthy brain tissue, Red is tissue in jeopardy, and Blue is tissue that is dead, and unrecoverable. As you can see, the right half of Mr. Livgren's brain was Blue.” I was even more stunned. No one had told us this before, especially in such graphic terms. Then Dr. Allen said “Now look at this image, taken later. As you can see, except for this very small area of Blue, the right half is all Yellow.”