It was a dark and stormy night. Well, it wasn't really stormy, but it was a dark night. Not particularly dark I guess. And, actually, it was about 1:00 in the morning, on July 11, 2002. I was fast asleep, until I was strangely awakened by an overwhelming sense of disorientation and numbness in my limbs.
I woke to the most frightening experience of my life.
For two days previous, my friend Todd and I had been holed up in a friend's river cabin on the Niangua, recording about 10 songs for a self-produced CD. We called ourselves "Brother Wiley" back then, and you won't find the disc anywhere, unless you ask me for a copy. We had a very productive session, thriving on very little sleep and original musical elixir. When I returned home, I recounted the stories to my family, then promptly collapsed in bed, exhausted.
"Messy," I slurred to my wife, Betsy. My speech was nearly gone.
She rolled over, in the throes of her own peculiar diorientation that comes from interrupted REM sleep.
"What?" she asked lazily, blinking.
"I can...I cn...Som...Somes wrong," I managed to stammer, my eyelids fluttering.
She bolted upright. "What? What's wrong? What's wrong?"
"I jst...I ngh...I jss...I ono...can think"
I managed to get "call 911" out somehow, then thickly rolled out of bed and started to stumble toward the bathroom. I don't know what I thought I was going to do there. I guess it's just where we go when something is wrong with our bodies. I discovered, when I got there, that I had an overwhelming urge to urinate. I did, then collapsed on the floor, moaning and slinging verbal nonsense. Betsy had run to get help; so, for a few moments I was alone.
What was happening in my mind was, "I'm dying. This is it. I don't know how or why, but this is it--the end of my life." I always thought I would face death calmly. "I'm not afraid to die." Lived with no regrets. Got my spiritual ducks in a row. Bullshit. I was terrified. "What would happen to my daughters? Will my wife remarry? Is there a hell?"
Amidst the blathering, I managed to get out, "Jesus. Jesus. Jesus..." not as a mantra, or even a prayer. It was just all I could think to say. All my talk about radical grace and learning to accept forgiveness, and I realized I didn't really believe it. I was a liar. When it came my time, I was not saturated with sweet assurance, I was tripping in a panic unlike anything I had ever felt before.
By the time the paramedics arrived, I had stabilized quite a bit. I was still weak and dizzy, but the severe disorientation and most of the numbness had passed. The immediate thinking was that I had experienced a TIA, or mini-stroke. The ER docs ordered a CT scan and blood tests. Normal. They did some other tests (thyroid, blood sugar, etc.), but everything came back fine.
Over the next few weeks, I had an MRI to test for MS or a brain tumor. Normal. An EEG to test for seizure disorders. Normal. A lumbar puncture (spinal tap) to test for things like encephalitis, Lyme's disease, West Nile, meningitis, etc. Normal. Normal. Normal.
It was mid-August and the new semester was upon us, and I was normal. I was so normal, I walked with a cane much of the time, and my incredible father drove me the 65-mile roundtrip commute each day, because I was experiencing too much vertigo to drive a car safely. I'm sure my classes were the height of academic stimulation: teacher talks in a monotone while staring at us like he is drunk.
Eventually, through my own research, I raised the possibility of low B12 level to my neurologist. He checked me and found that I was right at the dangerously low threshold. I began taking B12 injections right away and experienced a dramatic improvement. I was able to function normally, but the lightheadedness and loss of balance were still with me. I think I have progressively gotten better, or I am just learning to cope with it. I still have "bad head" periods, where I experience pressure, a cognitive fuzziness, fatigue, a loss of balance, and a variety of other symptoms.
Over the course of the last--soon to be--four years, I have had two more MRIs (the brain pics are from the last one), numerous blood tests, a full allergy panel, an inner ear exam, and I've worn a heart monitor. I've been examined by three ER docs, three primary care physicians, four neurologists, an ear, nose, and throat specialist, an allergist, and two chiropractors, one of whom also practices acupuncture and Chinese medicine. I have discussed my case with at least three lawyers, several English professors, and one landscaper. No one seems to have a clue. The result of every test and medical visit: I am in perfect health.
Two different doctors essentially told me I should quit being a baby and get over myself, suggesting it was all in my head. I guess that's what medical dumbasses say when they are too stupid to figure out what ails their patients. "It's not in my handy-dandy medical differential diagnostic guidebook, so you must be cuckoo."
I don't happen to believe that mental illnesses should be stigmatized, so I even went through a mental screening with a psychiatric counselor. After 30 minutes of insightful probing like, "Are you under a lot of stress at work?" the therapist declared my problems to be purely physical, rejecting me as a psychiatric patient.
As a longshot I tried two different selective serotonin reuptake inhibitors (SSRIs). One made me much worse, and one made me happier...but I still had all my normal symptoms. I'm not a fan of long-term medicating, so I punted the depression pills. I took sleep aids for quite awhile, since I had taken to sleeping 3-4 hours a night. I have since quit that, and my slumber has improved a bit. I tried various herbal remedies that either did nothing or exacerbated my symptoms. So, no medications have worked.
I struggle with my memory sometimes, and I still tip over sometimes. But, since I have passed 4o in the interim, I don't know how much of it is aging and how much is bad head. Overall, I can function normally, I'm just not always doing so well behind the veil.
So, why am I telling you all this?
Sympathy. I want to be showered with well-wishing and pies. Warm pies. Mmmm, warm pies.
I'm really not fishing for encouragement. Please don't leave comments about how you are praying for me. There is some question about how effective that is these days anyway. I'm not really looking for help. If you want to pray for me, just do it; don't tell me about it. However, your time would be better spent if you prayed for them.
I suppose this is partly an exercise for me to try to understand things better by telling the story. Maybe some aspiring medical genius will read this and figure out what's wrong with me (there's a pie in it for you if you do). Maybe I would like to use this as an excuse for why I haven't posted anything in a month. It has been a bad head couple of weeks, but that's never stopped me before.
Some have suggested that I should be careful telling this story publicly, since employers or other interested parties might be tempted to discriminate against me because of my health condition. I have serious disagreements with some of the folks at the University, but I must say that no one there has ever been anything but kind and supportive regarding my health.
Maybe this is the reason for this post: I have been a little discouraged about my spiritual vibrancy lately. I begin to wonder sometimes if I am just kidding myself, that I really don't believe, and that I am a terrible person, husband, father, friend, teacher, musician, writer, etc. But, I am encouraged when I remember that when I was "dying," it made perfect sense to me to cry out the name of my savior. Nothing else came to mind. The only hope I saw in the face of certain ruin was the One. It's a no-brainer as a Sunday School answer, but the name came to my lips automatically, in the time of my greatest fear.
I don't know if he saved me that night. Maybe things just happened the way biology dictated they should. I must confess that it pisses me off sometimes that my so-called savior hasn't fixed me completely. I sometimes wonder how much good I could do if I didn't fall into an occasional brain cloud. I am selfish and spoiled. I want to be fixed and I don't understand what the hold up is. Then I listen to how I talk to my daughters sometimes, how I ignore the poor, how my dogs go unwalked when I don't feel like getting out, how I cut people off in traffic, how I snicker at the misfortunes of others, and I think: It's a wonder that I still know how to breathe.
13 comments:
Maybe there's a question of whether you really do know how to breathe. If we absolutely had to remember to breathe, we'd all just simply die.
The body takes care of itself for the most part and it's best not to get in the way.
But this business of why your so-called savior hasn't fixed you completely. Most people in this world would love to be as fixed as you are. A good job, nice old house, beautiful wife and daughters.
It's an interesting post when you mention them .
We've all got our trials and tribulations. Our down days. I don't begrudge you that. But really, just about anyone reading your blog - or any blog - has a charmed life for the most part.
The question is what do we focus on. The moments of grace in our lives or the frustrating things we don't quite understand. I know I don't do a good job of it.
Lately, I've had a tough time of it at work. But I've tried to remind myself that I'm living in the first world. And I've never had a gun pointed at me and I've never pointed a gun at anyone else. I could go on.
But it's like the title of that Oscar winning movie, "Life is beautiful."
You always inspire me with your insight, dedication, creativity and spirituality. To know that you, too, have moments of pause brings me comfort in my own self journey.
In our recent move, we have questioned why we were uprooted from a comfortable, safe, happy life to a seeming "city of hell". Part of that is our on self doing. We did choose to move, but who knew the rest of the big, wide world was not like Springfield? In our adjustment and the underbelly of society that we have recently been introduced to, I have come to the realization that, maybe my time in this city is going to be one of learning, and putting my energies toward helping an element of the community that I normally wouldn't be involved in. It was easy to help the affluent, professional neighborhood get organinzed, but I never thought of going across the tracks and putting myself outside of my comfort zone. Here, I am in a neighborhood that is WAY outside of my comfort zone, and I need to be here.
I am saying all of that not to downplay your issues, but to relate to you what I have recently realized - we are presented with hardships. How we choose to let them affect us sculpts our lives. My attitude is to take the difficult situations in life and try to find out how I can make them positive, if not for me, for someone else. That is the only way that I am going to become a better person. Not by taking the easy route. I am confident that you know this, but, like most, maybe you just need a gentle nudge back on track.
Thanks for telling your story. I often wonder a lot of the same things.
I'm not sure if you know my story. About a year after the onset of your stuff, I woke up with stomach pain and dizziness. I had completely lost all appetite -- and experienced more pain if I ate. Within a week, I also began experiencing severe headaches and memory loss -- also before the beginning of a semester. It never crossed my mind to take time off, because I had never experienced long-term illness. But after every test in the book, I too was told that it was "all in your head."
I was eventually told to go to counseling and put on an SSRI, but neither really helped me. I gradually got better, but after a year of declining grades due to the confusion and memory loss I experienced.
I still feel pain in my side and experience times of unexplained dizziness, but these days it mostly just reminds me of the year I learned doctors don't know everything.
So, yeah, thanks.
Thanks for telling your story. I often wonder a lot of the same things.
I'm not sure if you know my story. About a year after the onset of your stuff, I woke up with stomach pain and dizziness. I had completely lost all appetite -- and experienced more pain if I ate. Within a week, I also began experiencing severe headaches and memory loss -- also before the beginning of a semester. It never crossed my mind to take time off, because I had never experienced long-term illness. But after every test in the book, I too was told that it was "all in your head."
I was eventually told to go to counseling and put on an SSRI, but neither really helped me. I gradually got better, but after a year of declining grades due to the confusion and memory loss I experienced.
I still feel pain in my side and experience times of unexplained dizziness, but these days it mostly just reminds me of the year I learned doctors don't know everything.
So, yeah, thanks.
I did not know that story, Jennifer.
Anytime you want to plan an assault on the medical establishment, I got your back.
Count me in. I'm almost four years into the "we don't know what's wrong with you" demiworld myself, after 13 years of "we know what's wrong but we don't know why and there's not much we can do." It just sucks, and there's nothing redemptive about it. The only good that's come out of it in my case is I moved back to my hometown so I'd be near family who could help me (fortunately I haven't needed that yet, but they've needed me, and I've actually been able to help) and I've gotten a lot more assertive about my own health care. I'll switch doctors in a heartbeat if I don't think I have their full attention. Doctors don't know everything. They just don't. That said, after four years I have made some peace with not having a diagnosis -- my body is what it is, and at this point my problems are sort of like an annoying cousin that I can't avoid but have learned how to tune out a lot of the time. :)
I'm frankly a little surprised that nobody's asked you the BIG question that's staring at all of us like the Elephant trying to hide beneath the area rug --
*what* is the sin in your life ?!
i mean _clearly_ God is punishing you...its just a process of elimination to figure out WHY.
Now THAT seems like an interesting thread to extend here on the reach -- your friends all gathered round to speculate about which sin is the one that's responsible...
Sorry. Once you pre-empted the "I'm praying for you" option, I just automatically fell back on the other most obvious Christian Platitudes available.
Seriously, though, its a shitty thing you're experiencing and I spend a good deal of yesterday thinking about how much this part of your life - so backstage - informs these stories you tell - for me the front stage, but in such an invisible way.
In any case it was a well told story, and I'm glad you told it. As you can see from the comments, it resonated with everybody, and I'll not chime in on *how* it resonated -- but it did with me too.
BTW ~ as you tell the story at family reunions etc...or if you need to explain yourself to your students after you tip over in class (knock on wood, hope it doesn't happen..) You might want to use one of my alltime favorite words to reffer to your ear nose throat doctor -- autorhinolaryngologist. It's stuck with me since Linda Richards, 10th grade English Teacher gave it to me, and I've always felt a little surprised and bitter that more of those doctors don't publish on their shingle. We need more good words in the world.
Thanks for yours.
If we all got what was coming to us, we'd pretty much all be dead, in my not-always-so-sunny-yet-ever-so-humble opinion.
I've done a lot of the same thinking you've been doing lately. The difference is I'm currently in the middle of one of the happiest and most rewarding periods of my life. It's what I see that disturbs me, not what's happening to me.
What I see amounts to admittedly anecdotal (and therefore suspect) but nevertheless compelling evidence that blessings are not conveyed according to merit or worth. Indeed, God often seems downright capricious, if His will indeed lies behind the sufferings and successes of us all. I'm still working out that part of my theology, but none of my questions have come close to finding answers. Like you, it's in part the realization of what a lucky sumbitch I am that keeps me from walking away.
Regardless of all that navel-gazing, what I know of you tells me that you are a strong and good man, someone whose character inspires me to improve mine. I won't lavish you with encouragement, but suffice it to say that though your human heart is certainly flawed, you recognize what is broken in you. You recognize it and are wounded by its sight, and you don't look away. Very few people are capable of that, and in my opinion, it's enough.
I believe we'll be up for your time in the spotlight next month, by the way. If your head's okay, I'll buy you a beer and we can try to correct each other's theology between sets.
You godless heathen bastard.
With all the reminders of grace, the perspective-taking nudges, the stories of shared medical frustration, the good-humored calls to repentance, and the recognitions of my bastardly heathenness, I must say it's good to be back after too long away. I'll try to not make it a habit.
I'm just glad you recognized the fear of death.
You can have a 99% perfect faith and still be afraid to die... partially because of that 1%, and partly because we as humans are always afraid of the unknown. If I were moving to a totally new city, like a previous commenter recently did, I could have a detailed description of the place and the people, from a person that I trust completely, and still be anxious. Why? Because I've never been there before!
In other words, your fear does not refute your faith. Especially in the heat of the moment. However, if you had re-occurring episodes of fear, then you'd want to take another look at your heart.
But thank you for letting that idea, among others, come to the surface.
And I want everybody to know that your writing on Radical Grace has inspired my most recent blog entry.
That sucks. Still. I knew about it and have to confess have occasionally forgotten, although I'm sure you haven't. I'm sorry. Just wanted you to know I think it's rotten. I'm tired of the cliche Christian responses to pain and suffering in our lives and think we all should be a little more willing to say simply that it's awful without feeling the need to make you feel terrible for feeling sorry for yourself.
What's this "my so-called savior" stuff? Either you believe or you don't. As someone who knew you when you were an out of control idiot (weren't we all?) and when your "so-called savior" changed your life, that pisses me off. You know better, and I know you know better.
And (hate to break it to you) in all likelihood "Messy" would marry again. Get her a nice fat term policy and they'll be beating a path. Sans pies...
Sorry to say it, Pokey, but since you've starting talking about my life way back when...well, I'm gonna have to kill you.
If I let you live, you can talk about my wife, but don't you dare start threatening my pies. Sweet, sweet pies.
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