Keith McIntyre

Rocky-Mountain-National-Park-Milky-WayDenver, Colorado
My journey actually began in June of 1989 when the specialist my dentist had referred me to informed me that I would need surgery and the extraction of most of my teeth in order to eliminate the infection in the gums. As I was busy with my law practice and had a family vacation planned for early August, we set the middle of August for the surgery, a decision that nearly cost me my life.

During a trip to the mountains over the fourth of July, I slipped and landed on the edge of a railroad tie in the middle of my back, causing a severe bruise. When I returned home I started treatments with a chiropractor to ease the bruising and pain in my back. Those treatments seemed to be helping for two weeks or so, then the pain and discomfort started increasing again. By the end of July, the pain had become quite severe, so on the first of August I saw a neurosurgeon with whom I was acquainted and after x-rays, in spite of the severe pain, he said there was nothing wrong with my back and to return to the chiropractor for further treatments. That afternoon I appeared before a legislative committee in Denver to give a presentation for the state community corrections group. I am told I did a good job, but have no memory of the presentation. By the next morning, after an early trip to court for a client, where again I have no memory, I returned home in such pain that it took all of my will power to keep from screaming. By then all I could do was rock back and forth and try to control the pain. It was at this point, on August 2nd that my wife took me to the ER.

From here on my memories are sketchy, distorted and nightmarish. Much of the rest of this account was told to me afterwards by family, friends and some of the 19 physicians that, at one time or another, had a hand in my treatment. During the next six days, my memories came and went, but are badly distorted or hallucinatory. For example on one day, while my wife and a friend were visiting I saw a huge black bug crawl across the floor of my room. I asked them if they had seen it and they just looked at me—there was no bug.

On Monday August 7th, having still not diagnosed what was wrong, they released me from the hospital after cautioning my family to remove all firearms from the house. About noon my family took me back to the ER because I had taken three showers in an hour—I felt that there were bugs crawling all over my body and I was trying to wash them off. This time I was placed in cloth restraints on my wrists as the neurosurgeon was now saying it was a mental problem and called in a psychiatrist. The psychiatrist, fortunately a friend of mine, examined me and informed my neurosurgeon it was not a mental problem, but rather a physical one which they had not yet diagnosed. At some point during this session, I am told, I ripped through the cloth restraints and punched a security guard who was trying to restrain me. They readmitted me to the hospital but this time with leather restraints on my wrists. It was at this time that the hallucinations really started although they generally bore some relation to reality. I would spend the next 3 weeks in constant fear that someone was trying to kill me and my hallucinations during that time, although they were often provoked by events in real life, bore out the theme of that fear.

That first night back, someone shoved what was to my mind a twisted metal handle, like on a doll’s stroller, down my throat and discussed among themselves whether to push up on the handle and kill me by tearing out my throat—a constant theme for the next 3 weeks. (A respirator had been inserted through my trachea and into my lungs.) That same night, I imagined that I was at an airport and trying to escape in a helicopter when someone grabbed me, bent me double, and stabbed me in the back. (My room in ICU was right above the heliport for ‘Flight for Life’ which would periodically take off and land.) A young cardiologist had caught a spiking temperature, had seen meningitis before, and took a sample of spinal fluid from my back.

Perhaps the clearest memory from this time occurred early the next morning, when I was suddenly looking down on some sort of laboratory and on a gurney in the room surrounded by nurses and doctors who were feverishly working on the person on the gurney. Although I could not see who was on the gurney, I knew it was me. This picture then started shrinking and disappeared into darkness. Suddenly, I was on the other side. I appeared to be walking down a dirt path in a pastoral setting. Everything was green, with rolling hills. The scene was lit by a light which, while very bright, did not hurt my eyes or cause me to squint. I was also aware of an incredible feeling of being at peace, a complete freedom from anxiety and pain. I met and talked to some people there. I don’t remember that they were anyone I knew. My only impression, oddly enough, is that they were well dressed. In our discussion I commented about this incredible feeling. I was told that if I stayed there, that feeling would remain, but if I chose to do so, I could return, back to this side. However, I was warned that there would be a great deal of pain, if I chose to return to this side. I asked whether, if I chose to return to this side, when I eventually died would I return here and was told yes. I didn’t ask perhaps a more important question, whether the pain would be just when I went back or whether it would continue for the rest of my life. I thought of my daughter who was graduating from high school the following May and who had circulated the petitions to put me back on the ballot the previous year for reelection to the school board, just so I could hand her her diploma. I thought of my son, who was to be married the following June. I thought of my wife who I would be leaving alone. I chose to return to this side. It is interesting to note that it was this memory that I recounted to friends and family immediately after I came out of my coma three weeks later and always referred to being “on the other side” in the telling. I did not share with them the nightmarish hallucinations until much later. This story however, seemed missing a part, as I was not aware until more than a year after I came out of the coma that my heart had indeed stopped that morning. My sister, who had come to support my wife during the ordeal and was back for a visit, commented something about my heart stopping, something my wife had blocked out. As I had my one year appointment coming up with the neurosurgeon that had done the surgery to drain the pool of infection in my spine, I asked him about a heart stoppage. He then told me about that morning in the lab.

He had been present in the laboratory on that Tuesday, August 8th when they were running an ‘indium’ scan to locate the abscess or pool of infection in the spine and, hopefully, to also find the source of the infection. Suddenly, my heart stopped. As he was present, he ran the ‘code blue’ (as it was called in that hospital) in an attempt to resuscitate. During that appointment, he told my wife and me that he honestly believed that my heart would not begin to beat again; that I was simply too sick and too far gone; that he would run the code for the required time, then call it, pronounce me dead and send me down for autopsy. He said he was the most surprised person in the room when my heart started beating again after being stopped for 2.5 to 4 minutes, by his memory.

Even after surviving this heart stoppage, my physicians held little hope for my survival. That same morning, after the surgery to drain the abscess in my spine, my regular cardiologist, who my wife had asked to co-ordinate all of the doctors and testing, told my son and wife that I was too sick to survive; when my wife asked what my chances of survival were, she was told “None, start gathering the family for the funeral.” My son’s fiancée called my daughter, who was in summer school at Harvard, getting ready to take finals, arranging for her to take the first flight with available seating back to Denver. For the next few days, whenever my wife was not at the hospital and the phone would ring, she expected it to be the hospital calling to say I had died. They didn’t even bother to bring in an oral surgeon until the weekend to pull most of my teeth so they could get at what would turn out to be the source of the infection, which had also shown up on the indium scan. The same seven bacteria that grew in the cultures from my back also grew in the cultures from under my teeth. I remember them telling me that, at least at that time, infection in the gums was the second most common way to get bacterial meningitis, behind the meningococcal bacteria.

That Tuesday morning, the 8th, they tested me for an allergy to penicillin, telling my family that if I was allergic to penicillin I was dead, as they had nothing else strong enough to fight the infection. Fortunately I was not allergic, even though I had believed for most of my life up to then that I was. They started me immediately on massive doses of penicillin, delivered by two sub-clavial lines directly to the edge of my heart, as the penicillin was so potent that if it spent any time in a vein prior to being mixed with blood by the heart, it would burn the inside of the vein. Later, on the weekend, even after they informed my family that I might live, they still cautioned them that there was no way of knowing, until I came out of the coma, whether I would be like I had been, be a vegetable or be somewhere in between. So my family spent the rest of those three weeks having to live with that uncertainty.
I continued having the nightmares—the hallucinations—all during the duration of my coma, although my memory goes in and out during that time. I pulled a catheter out of my bladder because I believed it contained a bomb set to go off inside me at 5:00. I lay for two hours with that belief watching the clock and trying to decide what to do, until finally at 4:55 I yanked out the catheter, in spite of the leather restraints. Again in spite of the restraints, I took a needle full of morphine away from a nurse and sprayed it all over the room, because I believed it contained an overdose that would kill me—her motive-I had not brought her husband, my step brother, back to life although I believed I had brought others back and even though her husband wasn’t dead. I am told that I would periodically thrash around fighting the restraints and the respirator.

When I finally awoke from the coma, near the end of August, 1989, I was disoriented and fearful, and when I became aware enough, wanting desperately to get out of the hospital. I was very weak, still unable to eat much and had difficulty drinking. Even though my calorie intake was less than 500 per day, my feelings were so strong, the doctor elected to release me to home care. It turned out that I had difficulty eating because I had an infestation of thrush in my mouth and throat which had been able to flourish because of the antibiotic. I would lose 60 pounds during this entire ordeal.

The after-effects from the ordeal fell loosely into three categories—physical, cognitive and emotional. From a physical standpoint, when I was released, I was so weak, that I only made it into the house because my wife walked backwards leading me and I then collapsed exhausted on the bed. The next day, I began the physical rehab process. At first improvement was measured in additional feet I could walk, then yards then eventually miles on my bike. It was many months before I was able to get back to what I considered full strength and I still had difficulty with my balance which continues to today.
The mental rehab process was much more difficult and would take much longer. When I first came out of the coma, I could not concentrate long enough to even watch a movie. That gradually improved and I was soon able to handle simple tasks at work. But for years, at 3 to 6 month intervals it seemed like a door would open in my brain and I suddenly could do something that I didn’t know I could do before. It was as if my brain was gradually re-wiring itself around the damaged areas. This continued for many years and still occasionally happens even recently, although on a minor scale.

Both mental and physical effects still remain. I can no longer make good snap decisions and it seems that, while I can remember things as well as ever for the short term, little information winds up in long term memory. When I pick up a book that I read in the 70’s or 80’s, I can remember reading it and generally the story line. But if I read it in the 90’s or even as recent as a year ago, I have little memory of it and often will get well into reading it again before I realize that I had read it before. I also occasionally transpose numbers in my head similar to mild dyslexia, but only with number, something I had not done before the meningitis. A friend who knew me for years before the meningitis told me in 1995 that he thought I had recovered to perhaps 95% of the mental capacity I had before the accident. Given the long-term memory difficulties, I think that is probably optimistic.

But the apparent physical effects that still remain are even scarier. For one thing, the abscess was located right at the root knot from the nerves in my legs, in the same location as my bruising from the fall, although my physicians have never formally said the two were connected. It had eaten its way through the leather-like sac covering the knot and had attacked the nerves. I now have no feeling in my feet and my balance is poor. In addition, I have substantial ringing in my ears which interferes with my ability to hear.

Even worse, however, are the subsequent breathing problems which only two years ago were formally tied to the meningitis, although my primary care doc and I had suspected for many years that there was a connection. The breathing difficulty started with a diagnosis of sleep apnea in 1990. In 1995, I was diagnosed with right side cardiac failure/pulmonary hyper-tension which had been ongoing for at least three years at that point—a condition that at the time was believed progressive and terminal. My weight, which had always been an issue, had begun climbing and would eventually top out in 1996 at 338 lbs, 50 lbs heavier than ever before. I was on oxygen 24/7 at 6 liters flow—audible across the room. This health problem would require me to step away from my law practice for 13 years while I worked to survive. I started the road back one beautiful spring day in 1996. I was looking out the window at the gorgeous weather, then grabbed a backpack for my O2 and climbed on my bike. I eventually equipped my bike to handle portable O2 containers and began serious riding again. The longest distance I rode on O2 would be 32 miles in just over 3 hours. Through a combination of bike riding and diet control, I finally got the right side cardiac failure under control and reduced my weight by over 90 lbs.

However, the diagnosis of this problem kept evolving, progressing to ‘Pickwickian Syndrome’ in 2005 and finally to hypo-ventilation in 2008. I was told that hypo-ventilation occurred because my brain did not always tell my lungs to breathe deeply enough or often enough. I have been able to keep the effects of hypo-ventilation under control only through frequent strenuous exercise, coupled with several medications including, frequently, oxygen. But it is always there, and has come back several times when I have slacked off on my exercise program. I was later told by my pulmonologist that hypo-ventilation is often a side effect among survivors of serious meningitis attacks.

Perhaps the most traumatic of all is the emotional damage. It wasn’t until sometime after I came out of the coma that the belief that others were trying to kill me finally went away. It didn’t take my psychiatrist friend to tell me that my battle with the infection that was trying to take my life was at the root of this belief. To this day, I still react with near panic if I wake up on a respirator and just last year, when this happened, I threatened by written note to remove it myself if the ICU team did not get someone in there to do it—a threat they took seriously enough that they pulled the respirator. When I was first released from the hospital after the meningitis, I was very insecure, for days calling my wife into the room to hug me and calm me. I still cannot talk about the experience without tearing up and feeling again the terrible anxiety of that time, although oddly enough, I no longer have a fear of death, only of the manner of dying.

As for the statement that there would a great deal of pain if I returned, it turned out to be true. I have had 21 invasive surgeries in my life, all but two occurring at or after my meningitis and all of them requiring some significant level of rehab. In addition to the effects of the hypo-ventilation and the surgeries, I have had pneumonia, a DVT, kidney stones, two wound infections (one of which has me on antibiotics for the rest of my life), severe arthritis, neuropathic pain in my feet and hands, a Charcot foot, a break down in the joints of the other foot and type two diabetes, all in the 21 years since my meningitis. I have to wear a special prosthetic device on my left calf and foot and orthotics for both feet. I have what is medically termed a ‘train wreck’ for a left hip with a hole in my pelvis where my socket should be, which keeps me in a wheel chair, on crutches, or on a walker all of the time, although I am allowed to ride a bike or trike for exercise.

The pain from the meningitis was immense. It seemed to consume my body so that every part of me hurt at the same time. In spite of having migraines when I was younger and a heart attack in 1988, until recently, no pain that I otherwise experienced would rate higher than a five on the 10 point pain assessment requests, when compared to the pain of meningitis. Only when I had an upper hip prosthesis break loose and tear up my pelvic bone, did I experience pain that approached, but never reached, the level of that from the meningitis.

I was asked the other day by a friend who knew my history whether, if I had known all I know now and all I have been through when making the choice to return from the other side, would I make the same choice? I thought of my three marvelous grandchildren, who I would never have met and of watching my son and daughter mature and make their way into their careers and, without hesitation, said yes, in spite of all of the pain, disability and difficulty, I would still make the same choice. While I was still in the hospital with meningitis, my wife asked the physician who had told her that I could not survive, whether my survival was a miracle. He said “No, Keith just refused to die.” The will to live can sometimes carry us through serious medical problems as it carried me through the meningitis and continues to carry me through the problems that have followed.

During a trip to the mountains over the fourth of July, I slipped and landed on the edge of a railroad tie in the middle of my back, causing a severe bruise. When I returned home I started treatments with a chiropractor to ease the bruising and pain in my back. Those treatments seemed to be helping for two weeks or so, then the pain and discomfort started increasing again. By the end of July, the pain had become quite severe, so on the first of August I saw a neurosurgeon with whom I was acquainted and after x-rays, in spite of the severe pain, he said there was nothing wrong with my back and to return to the chiropractor for further treatments. That afternoon I appeared before a legislative committee in Denver to give a presentation for the state community corrections group. I am told I did a good job, but have no memory of the presentation. By the next morning, after an early trip to court for a client, where again I have no memory, I returned home in such pain that it took all of my will power to keep from screaming. By then all I could do was rock back and forth and try to control the pain. It was at this point, on August 2nd that my wife took me to the ER.

From here on my memories are sketchy, distorted and nightmarish. Much of the rest of this account was told to me afterwards by family, friends and some of the 19 physicians that, at one time or another, had a hand in my treatment. During the next six days, my memories came and went, but are badly distorted or hallucinatory. For example on one day, while my wife and a friend were visiting I saw a huge black bug crawl across the floor of my room. I asked them if they had seen it and they just looked at me—there was no bug.

On Monday August 7th, having still not diagnosed what was wrong, they released me from the hospital after cautioning my family to remove all firearms from the house. About noon my family took me back to the ER because I had taken three showers in an hour—I felt that there were bugs crawling all over my body and I was trying to wash them off. This time I was placed in cloth restraints on my wrists as the neurosurgeon was now saying it was a mental problem and called in a psychiatrist. The psychiatrist, fortunately a friend of mine, examined me and informed my neurosurgeon it was not a mental problem, but rather a physical one which they had not yet diagnosed. At some point during this session, I am told, I ripped through the cloth restraints and punched a security guard who was trying to restrain me. They readmitted me to the hospital but this time with leather restraints on my wrists. It was at this time that the hallucinations really started although they generally bore some relation to reality. I would spend the next 3 weeks in constant fear that someone was trying to kill me and my hallucinations during that time, although they were often provoked by events in real life, bore out the theme of that fear.

That first night back, someone shoved what was to my mind a twisted metal handle, like on a doll’s stroller, down my throat and discussed among themselves whether to push up on the handle and kill me by tearing out my throat—a constant theme for the next 3 weeks. (A respirator had been inserted through my trachea and into my lungs.) That same night, I imagined that I was at an airport and trying to escape in a helicopter when someone grabbed me, bent me double, and stabbed me in the back. (My room in ICU was right above the heliport for ‘Flight for Life’ which would periodically take off and land.) A young cardiologist had caught a spiking temperature, had seen meningitis before, and took a sample of spinal fluid from my back.

Perhaps the clearest memory from this time occurred early the next morning, when I was suddenly looking down on some sort of laboratory and on a gurney in the room surrounded by nurses and doctors who were feverishly working on the person on the gurney. Although I could not see who was on the gurney, I knew it was me. This picture then started shrinking and disappeared into darkness. Suddenly, I was on the other side. I appeared to be walking down a dirt path in a pastoral setting. Everything was green, with rolling hills. The scene was lit by a light which, while very bright, did not hurt my eyes or cause me to squint. I was also aware of an incredible feeling of being at peace, a complete freedom from anxiety and pain. I met and talked to some people there. I don’t remember that they were anyone I knew. My only impression, oddly enough, is that they were well dressed. In our discussion I commented about this incredible feeling. I was told that if I stayed there, that feeling would remain, but if I chose to do so, I could return, back to this side. However, I was warned that there would be a great deal of pain, if I chose to return to this side. I asked whether, if I chose to return to this side, when I eventually died would I return here and was told yes. I didn’t ask perhaps a more important question, whether the pain would be just when I went back or whether it would continue for the rest of my life. I thought of my daughter who was graduating from high school the following May and who had circulated the petitions to put me back on the ballot the previous year for reelection to the school board, just so I could hand her her diploma. I thought of my son, who was to be married the following June. I thought of my wife who I would be leaving alone. I chose to return to this side. It is interesting to note that it was this memory that I recounted to friends and family immediately after I came out of my coma three weeks later and always referred to being “on the other side” in the telling. I did not share with them the nightmarish hallucinations until much later. This story however, seemed missing a part, as I was not aware until more than a year after I came out of the coma that my heart had indeed stopped that morning. My sister, who had come to support my wife during the ordeal and was back for a visit, commented something about my heart stopping, something my wife had blocked out. As I had my one year appointment coming up with the neurosurgeon that had done the surgery to drain the pool of infection in my spine, I asked him about a heart stoppage. He then told me about that morning in the lab.

He had been present in the laboratory on that Tuesday, August 8th when they were running an ‘indium’ scan to locate the abscess or pool of infection in the spine and, hopefully, to also find the source of the infection. Suddenly, my heart stopped. As he was present, he ran the ‘code blue’ (as it was called in that hospital) in an attempt to resuscitate. During that appointment, he told my wife and me that he honestly believed that my heart would not begin to beat again; that I was simply too sick and too far gone; that he would run the code for the required time, then call it, pronounce me dead and send me down for autopsy. He said he was the most surprised person in the room when my heart started beating again after being stopped for 2.5 to 4 minutes, by his memory.

Even after surviving this heart stoppage, my physicians held little hope for my survival. That same morning, after the surgery to drain the abscess in my spine, my regular cardiologist, who my wife had asked to co-ordinate all of the doctors and testing, told my son and wife that I was too sick to survive; when my wife asked what my chances of survival were, she was told “None, start gathering the family for the funeral.” My son’s fiancée called my daughter, who was in summer school at Harvard, getting ready to take finals, arranging for her to take the first flight with available seating back to Denver. For the next few days, whenever my wife was not at the hospital and the phone would ring, she expected it to be the hospital calling to say I had died. They didn’t even bother to bring in an oral surgeon until the weekend to pull most of my teeth so they could get at what would turn out to be the source of the infection, which had also shown up on the indium scan. The same seven bacteria that grew in the cultures from my back also grew in the cultures from under my teeth. I remember them telling me that, at least at that time, infection in the gums was the second most common way to get bacterial meningitis, behind the meningococcal bacteria.

That Tuesday morning, the 8th, they tested me for an allergy to penicillin, telling my family that if I was allergic to penicillin I was dead, as they had nothing else strong enough to fight the infection. Fortunately I was not allergic, even though I had believed for most of my life up to then that I was. They started me immediately on massive doses of penicillin, delivered by two sub-clavial lines directly to the edge of my heart, as the penicillin was so potent that if it spent any time in a vein prior to being mixed with blood by the heart, it would burn the inside of the vein. Later, on the weekend, even after they informed my family that I might live, they still cautioned them that there was no way of knowing, until I came out of the coma, whether I would be like I had been, be a vegetable or be somewhere in between. So my family spent the rest of those three weeks having to live with that uncertainty.

I continued having the nightmares—the hallucinations—all during the duration of my coma, although my memory goes in and out during that time. I pulled a catheter out of my bladder because I believed it contained a bomb set to go off inside me at 5:00. I lay for two hours with that belief watching the clock and trying to decide what to do, until finally at 4:55 I yanked out the catheter, in spite of the leather restraints. Again in spite of the restraints, I took a needle full of morphine away from a nurse and sprayed it all over the room, because I believed it contained an overdose that would kill me—her motive-I had not brought her husband, my step brother, back to life although I believed I had brought others back and even though her husband wasn’t dead. I am told that I would periodically thrash around fighting the restraints and the respirator.

When I finally awoke from the coma, near the end of August, 1989, I was disoriented and fearful, and when I became aware enough, wanting desperately to get out of the hospital. I was very weak, still unable to eat much and had difficulty drinking. Even though my calorie intake was less than 500 per day, my feelings were so strong, the doctor elected to release me to home care. It turned out that I had difficulty eating because I had an infestation of thrush in my mouth and throat which had been able to flourish because of the antibiotic. I would lose 60 pounds during this entire ordeal.

The aftereffects from the ordeal fell loosely into three categories—physical, cognitive and emotional. From a physical standpoint, when I was released, I was so weak, that I only made it into the house because my wife walked backwards leading me and I then collapsed exhausted on the bed. The next day, I began the physical rehab process. At first improvement was measured in additional feet I could walk, then yards then eventually miles on my bike. It was many months before I was able to get back to what I considered full strength and I still had difficulty with my balance which continues to today.

The mental rehab process was much more difficult and would take much longer. When I first came out of the coma, I could not concentrate long enough to even watch a movie. That gradually improved and I was soon able to handle simple tasks at work. But for years, at 3 to 6 month intervals it seemed like a door would open in my brain and I suddenly could do something that I didn’t know I could do before. It was as if my brain was gradually re-wiring itself around the damaged areas. This continued for many years and still occasionally happens even recently, although on a minor scale.

Both mental and physical effects still remain. I can no longer make good snap decisions and it seems that, while I can remember things as well as ever for the short term, little information winds up in long term memory. When I pick up a book that I read in the 70’s or 80’s, I can remember reading it and generally the story line. But if I read it in the 90’s or even as recent as a year ago, I have little memory of it and often will get well into reading it again before I realize that I had read it before. I also occasionally transpose numbers in my head similar to mild dyslexia, but only with number, something I had not done before the meningitis. A friend who knew me for years before the meningitis told me in 1995 that he thought I had recovered to perhaps 95% of the mental capacity I had before the accident. Given the long-term memory difficulties, I think that is probably optimistic.

But the apparent physical effects that still remain are even scarier. For one thing, the abscess was located right at the root knot from the nerves in my legs, in the same location as my bruising from the fall, although my physicians have never formally said the two were connected. It had eaten its way through the leather-like sac covering the knot and had attacked the nerves. I now have no feeling in my feet and my balance is poor. In addition, I have substantial ringing in my ears which interferes with my ability to hear.

Even worse, however, are the subsequent breathing problems which only two years ago were formally tied to the meningitis, although my primary care doc and I had suspected for many years that there was a connection. The breathing difficulty started with a diagnosis of sleep apnea in 1990. In 1995, I was diagnosed with right side cardiac failure/pulmonary hyper-tension which had been ongoing for at least three years at that point—a condition that at the time was believed progressive and terminal. My weight, which had always been an issue, had begun climbing and would eventually top out in 1996 at 338 lbs, 50 lbs heavier than ever before. I was on oxygen 24/7 at 6 liters flow—audible across the room. This health problem would require me to step away from my law practice for 13 years while I worked to survive. I started the road back one beautiful spring day in 1996. I was looking out the window at the gorgeous weather, then grabbed a backpack for my O2 and climbed on my bike. I eventually equipped my bike to handle portable O2 containers and began serious riding again. The longest distance I rode on O2 would be 32 miles in just over 3 hours. Through a combination of bike riding and diet control, I finally got the right side cardiac failure under control and reduced my weight by over 90 lbs.

However, the diagnosis of this problem kept evolving, progressing to ‘Pickwickian Syndrome’ in 2005 and finally to hypo-ventilation in 2008. I was told that hypo-ventilation occurred because my brain did not always tell my lungs to breathe deeply enough or often enough. I have been able to keep the effects of hypo-ventilation under control only through frequent strenuous exercise, coupled with several medications including, frequently, oxygen. But it is always there, and has come back several times when I have slacked off on my exercise program. I was later told by my pulmonologist that hypo-ventilation is often a side effect among survivors of serious meningitis attacks.

Perhaps the most traumatic of all is the emotional damage. It wasn’t until sometime after I came out of the coma that the belief that others were trying to kill me finally went away. It didn’t take my psychiatrist friend to tell me that my battle with the infection that was trying to take my life was at the root of this belief. To this day, I still react with near panic if I wake up on a respirator and just last year, when this happened, I threatened by written note to remove it myself if the ICU team did not get someone in there to do it—a threat they took seriously enough that they pulled the respirator. When I was first released from the hospital after the meningitis, I was very insecure, for days calling my wife into the room to hug me and calm me. I still cannot talk about the experience without tearing up and feeling again the terrible anxiety of that time, although oddly enough, I no longer have a fear of death, only of the manner of dying.

As for the statement that there would a great deal of pain if I returned, it turned out to be true. I have had 21 invasive surgeries in my life, all but two occurring at or after my meningitis and all of them requiring some significant level of rehab. In addition to the effects of the hypo-ventilation and the surgeries, I have had pneumonia, a DVT, kidney stones, two wound infections (one of which has me on antibiotics for the rest of my life), severe arthritis, neuropathic pain in my feet and hands, a Charcot foot, a break down in the joints of the other foot and type two diabetes, all in the 21 years since my meningitis. I have to wear a special prosthetic device on my left calf and foot and orthotics for both feet. I have what is medically termed a ‘train wreck’ for a left hip with a hole in my pelvis where my socket should be, which keeps me in a wheel chair, on crutches, or on a walker all of the time, although I am allowed to ride a bike or trike for exercise.

The pain from the meningitis was immense. It seemed to consume my body so that every part of me hurt at the same time. In spite of having migraines when I was younger and a heart attack in 1988, until recently, no pain that I otherwise experienced would rate higher than a five on the 10 point pain assessment requests, when compared to the pain of meningitis. Only when I had an upper hip prosthesis break loose and tear up my pelvic bone, did I experience pain that approached, but never reached, the level of that from the meningitis.

I was asked the other day by a friend who knew my history whether, if I had known all I know now and all I have been through when making the choice to return from the other side, would I make the same choice? I thought of my three marvelous grandchildren, who I would never have met and of watching my son and daughter mature and make their way into their careers and, without hesitation, said yes, in spite of all of the pain, disability and difficulty, I would still make the same choice. While I was still in the hospital with meningitis, my wife asked the physician who had told her that I could not survive, whether my survival was a miracle. He said “No, Keith just refused to die.” The will to live can sometimes carry us through serious medical problems as it carried me through the meningitis and continues to carry me through the problems that have followed.