Ok, on with the story. If you’ve read parts 1-7 you know I’ve been through quite the ordeal so far. It’s over now. All that is behind me and I can move on. I can start living my life again and not worry about what’s wrong with me or what surgery I need next. This was in the fall of 1995 and I’m feeling pretty good. I started working a managing a store again and gigging with my sax full-time. All that bad tumor stuff was behind me………….
Although,……..about once a week I started getting these unbearable headaches. I never had headaches like these before. I just felt awful. My head would have this dull ache and sometimes sharp pains. I couldn’t stand noise or bright lights or anything. At times, I would feel really nauseous, sometimes even throwing up. The only thing that would get rid of it was sleep. If I slept for any amount of time when I woke up it would be gone. I got in the habit when I had these headaches of taking Tylenol PM then falling asleep for 4-6 hours during the day and when I woke up the headache would be gone. These headaches would occur about every 7-10 days on average. I didn’t go to see anyone about these headaches because I thought they were just a side effect of having your brain operated on. Once in a while, I would have the amusing thought that maybe they left a scalpel or sponge in my head and that was causing my headache issues but that was me just using my humor to deal with the situation.
In August of 1996 (almost a year later), I got one of these horrible headaches. I knew it was coming and called in sick to work that day. It was a bad one. I immediately took some Tylenol PM and fell asleep thinking that the headache would be gone when I woke up. I woke up a few hours later and ran to the bathroom to throw up. My head was killing me! This was the worst headache I had ever had! I laid in my bed and a couple minutes later had to run to the bathroom again to throw up. This order of events continued over the next hour and soon it was all just dry heaves and my head felt like it was going to explode! I mean it was the worst headache you could imagine TIMES 10!
Back to MGH again!
Finally, after realizing that the dry heaves were not stopping, I got my roommate and told him he had to drive me to Mass General Emergency room. Something was seriously wrong with me. He drove me as I moaned and threw up over and over again into a large black garbage bag the whole ride there. I remember sitting in that all to familiar emergency room hugging my big black garbage bag as I waited to throw up again. My head hurt so bad that I think if had had a gun I would have ended it right there. I was moaning and rocking back and forth. (I kind of missed the the first visit there when I was laughing hysterically…….)
After what seemed like an incredibly long wait, they finally saw me. I told them my symptoms and they decided to do a lumbar puncture. I had no idea what that was but cried out “Just do it!” I also kept asking and pleading for some form of pain medication. Anything……..Morphine would work, Codeine, Percocet, Vicodin…….JUST GIVE ME SOMETHING!!!!! They politely said “No” and that they had to assess what was wrong first.
So………they performed a lumbar puncture. Now, for those of you who don’t know, a lumbar puncture is where they stick a pretty long needle into your lower spine and withdraw spinal fluid. They then take that spinal fluid to the lab to examine it. As they described the procedure to me I was scared but at the same time, I was in so much pain that I wanted them to just get it over with. I had to curl up into a ball on a table and they inserted the large needle into my spinal cord. It was not a pleasant experience for me……..
They came back a little while later and said that I had bacterial meningitis. My first words as I remember were “NOW, CAN I HAVE SOME FREAKIN’ DRUGS?” (Sorry for my language, trying to make this realistic) They soon came with some nice drugs that took the pain away. I was so so happy after that. My pain was gone and I felt like I was floating………….
Anyways, they gave me whatever I needed to fight bacterial meningitis and I got better. I remember them telling me that I was very lucky that I had come in and probably would have died if I didn’t. I remember an awkward prayer where I thanked God that I gone to the hospital in time but at the same time I was wondering why God would give me bacterial meningitis in the first place after everything I had been through already. I finally resolved that I would never know the answers to those types of questions and decided to put that question in my list of questions to ask God someday……. It was a close call and I was glad to be alive. (not to mention not have that horrible headache)
Now, the number one question on every doctors mind that came to see me was “How had I gotten bacterial meningitis?”. They were questioning me like I had committed some crime or something. I guess this type of bacterial meningitis just doesn’t pop up out of nowhere in adults very often. They were asking me about every detail of my life and they all looked a little bewildered to be honest. Near the end of my stay, an intern came in and was chatting with me and asking questions. He asked what I did for a living. I responded that I played the saxophone professionally. He jumped up out of his chair and said “THAT’S IT!” and ran out of the room. I just sat there thinking “OK, that was weird!”.
A little while later, a whole team of residents in training, and the head doctor came in with that intern smiling this big cheesy grin. It’s always funny to see all these residents in white coats coming in with the head doctor and his white coat. Looks sort of like a flock of geese……… The doctor said that they had concluded that my saxophone playing had opened up my eustachian tube (they had sealed this on the left side of my head when I had the brain tumor surgery a year earlier). They surmised that the opening eustachian tube was letting bacteria enter up into my brain from my mouth and causing the meningitis. They couldn’t see the opening on the MRI’s and CT scans but they thought that when I played the saxophone, the added pressure was probably opening up the eustachian tube they had sealed shut in the first surgery. Solution: they had to go back in and seal it up again. I wasn’t too happy about that………another brain operation!
They called my surgeon in and I remember him coming into my room to talk to me. Now pay attention here because this is pretty darn funny! (at the time it wasn’t) The surgeon comes in my room to talk about the whole procedure and in the process mentions that in the future I can never play the saxophone again. Let me repeat that, he says I CAN NEVER PLAY THE SAXOPHONE AGAIN!!! He just keeps rambling on but then stops when he notices the pale complexion of my face and my watery eyes perhaps. As we stare at each other in silence, I ask “What did you mean by that?” He responds “It is far too dangerous. If you play your sax, the pressure could open this up again and you could die. It’s better not to play and live a long happy life.” There was a long awkward silence after that. I was speechless. Finally, I said “You don’t understand, this has been my life since 7th grade. This has been all I’ve done and pursued. I love it!”
Now, if this was in a movie you can imagine that this would be a big scene. This would be that big tear jerker scene where someone would win an Oscar or something for their emotional portrayal. There’s a moment of silence that is just frozen in time as you wait for what the doctor will say. What tender and thoughtful words will he utter to console this beaten down victim of fate? What words of wisdom and support will he offer? Surely this man of great learning and study would offer the perfect words for his patient. Here are the words I have etched in my memory from that day as one of MGH’s top Neurosurgeons said them:
“I can totally understand how you feel. I play bass in the hospital band and really love it also. If I had to give up bass playing, it would devastate me also.” I don’t remember what he said next. I remember he got up and walked out of the room and I was in this cloud of thought. The words that kept resounding in that cloud were these “DUDE, YOU’RE A FREAKIN’ NEUROSURGEON!” I mean come on, the guy had Neurosurgery to fall back on if something happened and he couldn’t play the bass in his fun doctor band or whatever it was. The point is, that he chose to go into neurosurgery and play bass as a hobby on the side. I didn’t do that. I didn’t have neurosurgery to fall back on! I chose saxophone over everything else. I didn’t really care too much about anything else, I just wanted to play my sax. Now, the Doctor was saying I couldn’t do that anymore! I was devastated! I’m too emotional to go on……………..I’ll see you in part 9.
Doug Fuegel says
From a distance I can really appreciate Steve’s pain from the bacterial meningites, our son John had it a few years ago; he lives in Amarillo, he said the pain was the worst he had ever experienced and I am not saying this bc I am his dad but he is one tough guy but this pain put him on his knees, we thought we were going to loose him, from that experience I can at least a little bit know what Steve went through. Steve I can maybe feel a little of your pain when the Dr. said no more sax playing; that would be like someone telling me “no more fishing” or your Dad no more bird hunting, but cold as it sounds life goes on, you apparently love music; I am no expert but there must be a world of music out there for you besides the sax, strings, key boards, conducting, etc., etc. I just hope you are well again and can lead a normal productive life. I know that’s what yout parents want bc they really love you.
Joe Molinaro says
DAMN AGAIN, CAN’T WAIT FOR THE NEXT PART!!!!!!!!
WHAT A RIDE, SORRY BUT GLAD IT WAS NOT I!
HOPEFULLY MY CLL WILL REMAIN DORMANT TIL AFTER I AM GONE/
What a story…. what a story… what a story…
Life can be hell… really…
Talking about weird life stories… Neff you are not the only one;
In my life also several weird things happened. The weirdest thing is this; This is still happening and it is making life very tough for me.
Due to a depression I lost my feeling of emotions. And that for a very sensitive person like me. I mean Before this happened I could really emotionally experience music (for example) especially jazz & dance music. Anyway, this happened for the first time ten years ago. Many factors met in my life, a heritage of my youth, sleeping problems, stress during my studies, problems with finding a proper place to life. It was all to much in that period. In the end I collapsed. Well… what a depression ‘is’, most people do know about that, I think. But that you can completely lose all your emotions, is not well known. Then, I went to a psychologist who helped me to recover. But two years later during my examination project at the university, the stress became to much of a drag again, and again I was sucked into a depression. After this, my emotional feelings never returned, until this day, 7 years after finishing the study. I have null emotions, no happiness, no feeling of joy, or pleasure, I don’t have the feeling of luck or a deep response to music. I nver can be happy when someone gives me a nice present. I cannot be sad or be grieving either… it’s gone, and I don’t know how to get it back. I have tried therapies, medicines, shrinks, psychologists… it didn’t work out. I think you can in a way compare it with becoming blind or deaf, a whole ‘world’ collapses, is gone. Yes, life can be very very weird…
At the moment I try to accept it as it is. I still play saxophone (Tenor and Soprano). I like to do it as a way to let pass the time. But it is not any longer a reflection of my emotion. I think people who hear me cannot believe I have no emotions, because I still know how to sound emotional. My daily life is not easy either, I fight against boredom and even though it its ‘technically’ impossible, I try to find goals in life that give satisfaction. The only way I can do that is by rationalizing them…
So, thats a bit of my story…
I am looking forward to part 9 of your story!!
(btw… maybe it belongs to ‘being’ a jazz-musician… when I read the biographies, there are many famous ones, with these kind of tough things in life)
Elaine Spitz says
I love you, Steve!