Tuesday, September 16, 2008
The Moments
My chronic headaches aren't about the pain reverberating throughout my skull. My headaches stopped being about that pain almost six years ago. It was around the time the Beltway snipers were finally arrested. Martha Stewart had yet to be indicted and Michael Jackson had yet to be arrested on child molestation charges. Kobe and Shaq still pretended to like each other. It was a long time ago. I was fourteen and about two months into living with the pain when I first realized the real toll my headaches exacted.
The real toll is in the thousands of moments like this one. The moments that are all unique but I have lived them all before and I know them far too well. These moments are my undesired companions in this journey and I despise every familiar introduction. They are the moments when I am curled up in bed unable to sleep and unable to stop my mind from racing along at a million miles an hour. They are the moments when I desperately want to see people...to talk to people...to get out and do things...only to find myself exhausted and in too much pain within ten minutes while looking at three more hours of faking and posturing my way through social interaction. They are the moments when I sit down at the dinner table after a bad day and my bad mood seeps into everyone around the table. My mom becomes noticeably more tense and irritated. My dad seems twenty years older and my sister has no idea what to do with herself other than tiptoe through the brief snippets of conversation. They are the moments when I have to call a friend to tell them I can't spend time with them because I don't feel well and the moments after the seemingly obligatory "I'm sorry. Feel better." If only it were that easy. They are the moments when I start to vomit from the pain when trying to push myself through some athletic activity when not feeling well and the moments when I get frustrated after a poor performance and yearn for the opportunity to see what I could have done with a healthy past or even present (because few things bother me as much my missed athletic opportunities). The moments are numerous but they are all recognizable because they are all the moments when I feel alone.
I don't mean to imply that the root of most of my problems lies anywhere other than with the pounding in my head. That is the reason for all of those moments. But the physical pain pales in comparison to the emotional, spiritual and mental pain. I can function and accomplish things in fairly severe physical pain...but my psyche takes the brunt of the consequences of all of that forced effort. True pain is not having daily headaches, even those of the incapacitating variety. The true pain in that situation can be found in the isolation of the sufferer once cut off from friends and family. It can be found in the never-ending emotional struggle for contentment and happiness. True pain cannot be found in a broken arm or a torn ACL but it can be found in broken hearts and worn-out minds. True pain is the type of pain that can drive a person insane because it creates a constant struggle within one's self. A struggle that no one else can see and a struggle that you cannot take the initiative in because that is not the nature of true pain. Some may tell you that the best strategy is to embrace the pain and use that as motivation to harden your resolve and create a new strength inside of you. True pain embraces you. And there is no way around it. You can only do your best to remain standing amidst the tidal waves of lonlieness, frustration, anger, and sadness and hope your efforts are enough.
So my chronic headaches aren't about the pain reverberating throughout my skull. My headaches turned into true pain rather quickly as I was not nearly mature enough at fourteen to handle any situation like the one that unfolded. The fifth Harry Potter book was nearly a year away from being released. Shrek won the Oscar for 'Best Animated Feature Film.' The Patriots had only won one Super Bowl. It was a long time ago. It took about two months for me to realize the moments in life that made fighting to get through to the next day worth it.
These moments stay with you long after they are gone. These moments give you hope in times of despair. They are the moments when your English class claps when you walk into school for the first time in months. They are the moments when your friends come to visit your house because they know you haven't seen anyone in a couple weeks due to continual absences from school. They are the moments when people you barely know inform you that they have been praying for you every night for the past two years and will continue to do so. They are the moments when your dad tears up telling you how proud he is of you. And how it means something because he was around for all the hard work and tough times. They are the moments when you are sitting in the hallway during the last period of the last day before Winter Break. When you are on your eighth test of the day and looking like...well like I don't know what. When a friend, not even a good friend, walks by on the way to her locker, looks over, sees you and kisses you on the cheek and says "Merry Christmas, Addy." They are the moments when you are awakened from a phone call during lunch period and a friend is on the other end of the line asking how you were simply because you were not in school today. Even though this happened regularly the calls still came. They are the moments when a person first finds out about you being sick and they ask questions and try to come up with answers or possible solutions to your problems. It doesn't matter that they don't necessarily know what they are talking about. It matters that they care. Because these are the moments when you remember that even though everyone has their own problems there are always people out there who care. Even if they can never understand what everything means they are always there. And you are not alone.
This last paragraph probably makes this the most optimistic thing I have ever written about being sick. I hope I am not going soft knowing that at least three people will read this. I would be terribly saddened by that turn of events...though I would be the first one to appreciate the irony of that situation. So obviously there is an upside for every situation? Was that the conclusion drawn here? Soft like butter.
"I have known many good people who did not believe in God. But I have never known a human being who was good who did not believe in people." ~John Lovejoy Ellliott
Friday, September 12, 2008
Do You Believe In Miracles?
I am undoubtedly the wrong person to give any rational opinion on sports. My first memories include moments like sitting on the toilet as a toddler and asking my mom to bring in the sports section so I could look at statistics while I did my business. Or of my nana tossing a whiffle ball to me and the resulting small lump on her forehead afterward. Apparently her reflexes were not quite what they were in her younger days. Line drives up the middle…all day, baby. I worked on my reading so I could read Wilbon, Boswell, and Kornheiser in the sports section of The Washington Post every morning and I learned math because I deemed it necessary to be able to figure out batting averages and completion percentages on my own. I made meticulous charts as a 4-year-old that displayed all the stats of my favorite teams. My pre-school teachers still remember me because I repeatedly brought those charts in for show-and-tell. I don’t think they quite understood what I was talking about with my taped-together sheets of paper and scribbled numbers but they humored me since it was apparent I was already off my rocker and they probably felt a bit sorry for me. I played imaginary games in my head between two teams composed of all my friends and wrote detailed game reports. You will be shocked to learn that my team usually won. Obviously I tried to keep it based on reality. In kindergarten, my teacher brought up the upcoming World Series between
As I grew older and no less wise, my love for sports grew and I formulated more substantial thoughts on what sports meant to me individually, their role in society and the power these fun and games possessed. I had always considered the summers playing little league baseball among the happiest moments of my life. However, not having the opportunity to play half as much as I would have liked in high school revealed exactly how important those summers were. The reason I missed sports so much could have been as simple as not being able to sate my burning desire for competition. Or yearning for the sense of achievement that crawls over you after a particularly good game; a game that justifies all the hard work put into improving yourself as an athlete. Or maybe I just had a whole lot of fun trying to beat the snot out of a small white ball with red laces. And just as much fun trying to put a bouncing orange ball through a basket 10 feet high or kicking a checkered ball past another kid in an alarmingly bright goalie jersey. But it was always more than all of that. Jim Bouton put it nicely when he said, “You spend a good piece of your life gripping a baseball and in the end it turns out that it was the other way around all the time.” Sports are an addiction. And every week that addiction is fed for a few hours at a time. You can’t stop if it’s going well because you want to ride that high as long as possible. And it is impossible to stop when struggling because you must play until things turn around for you. How can you take one last jump shot? The last one has to go in because it is common practice to end on a make…but it is accepted everywhere that you shoot until you miss. It is a miracle that any dedicated basketball player ever leaves the gym knowing these two basic tenets. When not actively participating, technology has progressed so that ESPN can shoot sports into your bloodstream 24 hours a day if that is your desire. ESPN, ESPN2, ESPN Classic, ESPNU, ESPN Deportes, streaming video from espn.com, ESPN The Magazine…Dodgeball really did hit the mark with ESPN8-The Ocho. It is probably right around the corner with live updates from the Rock-Paper-Scissors World Championships. Seriously…this will happen at some point in my lifetime. I suffer from sports addiction and the endless supply of information and limitless possibilities only encourage my bad habits. I’m jonesing for a game right now but instead I have to content myself with surfing espn.com while I write this. I am already worried about trying to live vicariously through my kids…hopefully my wife knocks some sense into me but I’m not counting on it. I am far too stubborn for my kids not to be good at sports. No pressure, little Jamaal and baby Latisha…
I realize that the majority of the population has less interest in sports than I do but in general sports have been established as a primary point of interest. There is a reason five minutes of every half-hour newscast focuses on sports highlights, every newspaper has a sports section, and events like the Super Bowl and the Olympics draw extremely high television ratings. People are interested on the basic level of wanting to witness extraordinary feats of athletic prowess that most of the general public can never come close to matching. Golf has taken off in terms of revenue and ratings over the past decade simply because Tiger Woods strikes a golf ball more effectively than anyone in the history of the game. Every weekend hacker can only marvel at the precision, poise and power that Tiger displays on the golf course. I consider myself a Usain Boltist at the moment simply because I have never seen anything quite as impressive as the middle 50m of the 100m final in
Remember when the calendar rolled into February of 1980? The
Hammer and Nail
There are a lot of frustrating things about being sick. From day-to-day the issue could be the repeated cancellation of plans and not being able to accomplish what I want or not being able to sleep despite all of my best efforts and then trying to get through the day looking like a coke addict because I have a severe headache and am running on two hours of sleep. Most of the maddening aspects of being sick have little to do with the way other people handle themselves and more to do with the general situation or my personal response to the problems I face. However, one of the most frustrating parts about the past six years deals with my encounters with various doctors and specialists.
Doctors are suppose to be the all-knowing (wo)men in white coats who listen to your symptoms, run a few tests, and come to the rescue with their magic prescription to mend you within a few days. I hated going to the doctor as a kid, but at least I knew I was going to be feeling better soon afterward. I assumed as much in September 2002 even after I was quickly referred to the Children Hospital's outpatient facility. Surely a respected neurologist and esteemed gastroenterologist could join forces and piece the puzzle together. But the tests came up negative and none of the medications being thrown together made any difference in my symptoms. The doctors did not seem particularly worried but I was already an unusual case in that I was not responding to any of the traditionally effective treatment plans. They maintained that there were more tests to run and that something would come up. They hoped to be able to fix the problem shortly.
They did not fix the problem shortly. And it was not even one of those cable company deals where they assure you they will come by between 10 and 4 on Tuesday but actually show up Thursday afternoon at which point they realize there is a problem they are unequipped to rectify and you are stuck without cable and internet for almost a week. I have been waiting six years for my cable to be fixed. The hold music has long worn out its' welcome. (Sidenote: Best part about being sick? Cable television. Family made the plunge fall of freshman year because I was at home all the time with nothing to do. There were days where I would not sleep very well and lie half awake on my couch all night and into the morning and wind up watching the same parts of Sportscenter five or six times between 2-10am...not good times. But go cable.)
Anyways...
I have seen many more doctors since those initial months of expecting a white knight to walk through the door with a stethoscope and clipboard that possessed all the answers. Many specialists over this time have admitted that they have no idea what exactly is going on. It is through their acknowledgments and my own experience that I have discovered that medical science is far more spotty than I had initially realized. It is unknown exactly why some medications work at certain times and the doctors merely can observe the positive effect on symptoms without knowing what is happening within the body. And there are plenty of cases similar to mine, with no real answer in any traditional or non-traditional field. I have no problem with this aspect of medicine. Every single man or woman I have seen about my headaches likely knows more about their field than I will ever know about anything in my entire life. Science is progressing at a tremendous rate and new discoveries are constantly being made. But a general trend has emerged among the various specialists I have seen that I do take issue with. And that is the presumptive nature of the profession...the presumption that they are the hammer and every patient who walks through their door is a nail.
The first psychiatrist I ever saw told me that my illness was psychosomatic and that I possessed an aversion to starting high school. The fourth psychiatrist I visited kept coming back to the point that I had attended five years of magnet programs before high school and continued to pop in and out of the IB program even while sick during high school. He seemed to see the headaches as a result of built-up tension and stress and that I was a possible case of burnout. He did have one thing right...I am now burnt out to some extent. Clearly he was just ahead of the curve. I have been told repeatedly by neurologists that they have seen similar cases and that such-and-such has had a fantastic success rate in treating headaches. In the end I always wound up being referred to another specialist or forced to find someone else on my own due to the ineffective nature of the treatment program. The chiropractor I just stopped seeing firmly believes that my problem can be fixed with continued care and effort. The explanation was perfectly plausible and may be worth trying again at some point. But after six months of treatment and no tangible effects on my pain, I felt perfectly justified walking away despite the admonishment I received on my way out the door. I know that they are trying to help and they truly believe that they have the answer. But that is not something I haven't heard a million times before. The more non-traditional gurus/doctors/specialists fight tooth and nail from the onset in order to establish their branch of medicine as legitimate. It is extremely tiresome to hear for the twelfth time in three visits that many patients can't believe how well such-and-such works despite the field being completely disregarded by Western medicine. I understand that everyone I have ever seen is in business for a reason...the service they sell works. They are good doctors. Some of them are literally the best. And I know that a patient more involved in their treatment is more likely to have better results and that is not even accounting for the placebo effect. And I have seen doctors who have been forthright and completely honest in their assessments that they could do nothing more for me. But the pattern of overbearing doctors became far too noticeable to ignore. I don't care about the diplomas on your wall. I don't care about your success rate. I just want you to be honest and adaptable and see me as more than another kid walking through your door. I want you to recognize that you might not actually have the answer. I want to be more than another nail. And I don't think that is too much to ask.
Wednesday, September 10, 2008
The (James) Gist
I don't have migraines. I have no aura or nausea (except when in extreme pain) and the pain is not mainly on one side of my head. The pain resides on the top of my head and above my eyes, on my forehead. It is much harder to function with the pain when tired or depressed. Six years ago I had abdominal pain, nausea, and vomited for two months before those symptoms dissipated. Midway through that process I started developing headaches as well. They did not go away. Actually, they got worse as time progressed. The abdominal problems were likely caused by some sort of a virus but whether or not my headaches are connected to that virus...well no one really has any idea. I have been officially diagnosed with the more malignant version of New Persistent Daily Headache. No, i did not make up the name myself. And yes, I know it is actually just a description of my condition. If you Google NPDH the first website that appears gives a fairly accurate summary. The last sentence on this website is "Unfortunately, at this time, there are no treatments specifically outlined for NPDH." In the end, that is all you really need to know but...
My headaches have never changed location and feel like the inside of my head is pushing out against my skull. I have had MRIs, spinal taps, CT scans, EEGs, EKGs, an endoscopy, and allergy testing. I have no idea how many times my blood has been drawn for testing.
I have seen the best headache specialists in the world, talked to six or seven psychiatrists, tried magnetic therapy, and undergone acupuncture treatment from a small Asian woman who spoke broken English. I have tried self-hypnosis and meditation and biofeedback. I have seen my dentist about my teeth and my optometrist about my eyes without any results.
I just finished seeing a chiropractor for the past six months. A friend brought holy dirt back from a trip she took. I rubbed it on my forehead. Seriously. I have been on diets that did not allow for chocolate, cheese, or anything fermented. I have been on a medication that made me gain thirty-five pounds and a medication that had me fifteen pounds too skinny. I have been on dozens of medications that had no effect. I have tried a medication that caused me to sleep for eighteen hours a day and a medication that caused unfathomable pain in my head for a couple minutes a dozen times a day and resulted in spasms and incoherent yelling. I can remember being vaguely aware of my surroundings but had very limited control over anything I was doing. My mom has probably never been so freaked out. The first time the dose of that drug was raised I lost all comprehension abilities. Everything I saw might as well have been Chinese. I could not read. That was actually more disconcerting than the pseudo-seizures that followed a month later. Needless to say I am allergic to Topamax. And that was not the finest winter break of my life.
I have undergone complete psychological testing; the highlights of which were the Rorschach (ink-blot) test and a 567 question multiple-choice assessment to determine just exactly how crazy I was. Upon completion the doctors told me that I was not making up my illness for attention and that I was suffering from depression. Unfortunately I did not tell them they were suffering from a case of Obviousitis. That would have made a good story but at the time I was apparently more intent on being polite.
I have seen a physical therapist who also specialized in massage. I have seen men and I have seen women...but I have never seen a black doctor. That is probably the real issue here. If you are reading this please get a life but also let me know about any black guys you know in medicine. I will accept tribal healers from Ghana if necessary. I have worn shoe inserts and taken various vitamins and supplements. I apologize for forgetting things I have done and having to end the list here...hopefully you get the picture. I have a reasonably good memory but it is not exactly photographic. Some of the more unorthodox methods may have slipped into the recesses of my mind at this point.
There have been only two things that have ever helped alleviate the pain. I can go to the emergency room at any point and ask for a certain combination of steroids and IV treatment with the knowledge that my headache will eventually be gone with continuous medication. The first time I went through this was in October 2003 and my headache was gone within two hours and stayed away for nearly a week. The last time I went through this treatment it took three days of overnight stay in the hospital for two or three days without pain. Other times I have left the hospital exhausted after spending most of my day in the E.R. and taken a nap upon arriving back home only to wake up with my usual headache. The E.R. is no longer a viable option but I had higher hopes for Dr. Bernard Filner. He is a general pain doctor who focuses on trigger point therapy. When tense, certain points in muscles around your body will trigger pain in other places. I had about a dozen active trigger points on my neck and shoulders that he worked on. He loosened them with laser therapy and from June 2006-October 2006 I only had a headache once a week and it was mild the majority of the time. As my headaches grew more frequent that fall I resumed more consistent visits to Dr. Filner but his treatment only stopped the pain for the rest of the day and left me so tired that I only felt marginally better. I continued to see him off-and-on for the following two years but at no time in the past six months have I visited his office and left without a headache. He had been my one real hope. Filner was the only tangible evidence I could point to and be optimistic for future success at managing my headaches. That is no longer the case.
So I am now looking at a future in which I may have to manage on my own. There are always new doctors to see and old doctors to re-visit but perhaps I need to figure out what I can do myself. I should take more responsibility in handling my own life in spite of mitigating circumstances and find out where my limits are. After the debacle that was spring semester of 2008, it is necessary I do well in school for the simple reason that it is a waste of time and money if I do not show that the repeated failing of classes last semester was a one-time deal. And as an individual going forward, it is important that I can prove to myself that I can almost manage a normal life. So I am pulling out all of the stops. Maybe this blog will serve its' purpose and be of therapeutic value. Maybe it won't. But I am trying. Because it is the second week of school and I have not attended class the past two days. Not because I chose to blow it off but because i could not get out of bed until three or four in the afternoon. It was all I could do to get the reading done necessary to complete my homework, get out for a meal or two, and have brief social interaction with some friends to avoid isolation and insanity. And so I have spent two hours writing on a blog that no one will ever read because it is nice to vent sometimes. The dirty laundry needs to be aired out. Speaking of which, I need to do my real laundry. Which, if aired out, my roommates will not appreciate nearly as much as this blog. That is right..."Sick With It"- Better Than Your Dirty Laundry...
I know this semester will be hard. Because in order to be productive in school I also need to stay happy and somewhat active outside of classes and academics. I have to walk the line between being a bum, getting depressed and lonely, and not getting anything done and trying to live a normal life of school, friends, sports, and partying that would be acceptable for most people but simply leave me burned out by the end of September. I don't actually know if that line exists for me. I have had quite a bit of trouble finding it. But maybe this blog will help me work some things out. That is the real idea behind this. I don't have any insights or conclusions to make here. But I guess this would normally be the place for them. The End.