Pickled by Pain
Pain God and Daddy Squirrel
Perception of time is astonishingly elastic while in incredible pain. Every single second after I lie down is filled with the violence of pressure against my legs, butt, back and head. Pain careens down my spine and back up again. I start to gobble short breaths to distract myself from this necessary process of adjustment. My body needs the bed. It needs massive dollops of rest. I must allow myself greater torture to receive at some point relief. Prayers to God asking that I die, thought at the speed of light. I imagine my soul sentient, looking down at my still warm body, embraced with a quietness and unsure of what follows as it departs. When exhaustion sets in on top of the pain, I sit in a daze for hours, time speeding at a snail’s pace as my body continues to scream. Sinking into an ocean of pain losing all sense of time till I emerge once more realizing hours have passed for me in what seems like seconds. At that point, my mind works like an insane googler, my thinking switching from topic to topic so rapidly I can recall no line of thought though I am sure there is one.
By the end of forty-eight hours an intense flare of pain metastasises. What I first perceived as screechings of an exacerbated disease called fibromyalgia has now become something much more sinister in representation: a form of hate. It slowly drips like “IV bag,” with caustic hydrochloric agony, and destroying all sense of equilibrium and self. I am use to the rhythms of the pain, even when it takes me to the level where I start desiring death. What I fear is the release of memories mixing in, eating away at my strong analytic side, reminding me of the density of emotional pain in my life . . . from my earliest days. If these two strains ferment too long within me, anything can happen.
I fear at some point the pain level will stay at such a high level that will plunge over the edge willingly falling into the chasm of no return.
The doctors do their best. I do my absolute best. If this happens, may God and my friends and family forgive me.
I am just trying to get to tomorrow.
There are ironies in living, and dealing, with chronic pain. I categorize “living with,” a no choice matter where as “dealing with,” is an action taken by the individual to try to bring some level of control to chaos. There are no Apple, or Android apps to manage an angry body. This is a difficult, incredibly upsetting, often humorous and eye opening, and a life questioning experience that I choose to learn from. It has been destructive to my personal dreams, to almost every aspect of my life My only tools are my intellect, discipline, spirituality, support network and my dark sense of humor. To own my life I chose to deal. Some don’t or can’t . . .. They are too shocked and overwhelmed by the change to adjust. This is not a Hallmark story, yet in this unsettled saga there are some glimpses, perhaps not of sunshine but a bright LED sculpted in the outline of a smiley face.
I am 50 years old and for a quarter century I have had symptoms of what finally got diagnosed ten years ago as fibromyalgia. This disease has been newly accepted diagnosis for around 15 years and attributed solely to a neurological origin for about seven. There is no blood test to determine if you have this disease, yet. Only the presence of pain in fourteen quadrants of your body and the absence of multiple sclerosis or any other explanation for body-wide pain. This then yields a diagnosis of fibromyalgia. Other symptoms include chronic fatigue, headaches and balance problems. There is only one medication to treat fibromyalgia called Lyrica and it is only effective on some patients. It has been available for around fifteen years and just has been remarketed under a different name to this select group of patients.
Given that the interaction between genetics, the environment and especially an immensely complex organ such as the brain, the research done on fibromyalgia is still in its foundling stages. In healthy individuals, there is a mechanism in the body that if it experiences severe pain in a location to turn it off. With fibromyalgia, the mechanism is disabled with substantial long term negative consequences. A former doctor of mine told me of research that said 60% of women who had the disease (90% of patient population) who were interviewed were raped. It appears that the combination of a high stress environmental factor especially before adulthood combined with genetic pre-disposition can trigger the onset of this disease. For most individuals, the pain and fatigue comes in cycles with a base level of discomfort that many can manage to work and be social on occasion. Still, these are insights, not scientific understanding of the mechanisms at work.
My case is especially intense because of an in September 2002. I worked in a huge building and the maintenance men used electric tricycles they stood on to carry their tools throughout the complex. I was hit by e-vehicle while in the hallway and thrown five feet. I did not break any bones but fibromyalgia makes your nervous system unable to handle major inputs of negative stimulus. I never worked again. Instead of a regular long term pattern of flare ups that cycle along a base line, I was faced within three weeks with sixty percent increase of my pain levels and steady pattern of increasing pain though the rate has slowed as of late.
I have been taking narcotics regularly since I was in my early thirties. I have tried morphine, fentanyl, dilaudid, and methadone until either I was reaching the maximum safe dose on morphine . . . the most effective reliever. Dilaudid which is effective for rapid increases in pain no longer reduces pain. During one test, a pain doctor told me that I was walking around with enough fentanyl flowing into my veins to anesthesize some of her patients for surgery. It is not something I am proud of. It scares me that my tolerance is so high and I have options that are so limited. Narcotics are meant to be taken short term. My pain receptors are getting burned out but I still need help. I feel very trapped.
Soon the only option left to boost the impact of the narcotics was to deliver the medicine directly to my spinal fluid. The device that achieves this is called an intrathecal pump (commonly known as a morphine pump). It connects a reservoir of fluid based narcotics placed in my abdomen by way of a small gauge hose with a needle penetrates my spinal column and delivers medication 24/7 directly to my spinal nerves. At this point, any increasing in my morphine dose makes me sleepy without any pain reduction.
I have tried every treatment for fibromyalgia, have maxed out on the effectiveness of narcotics and now spend more than half of my substantial mental energies blocking out the pain. There is no reason for me to call a doctor let alone go to an emergency room only complaining of extreme pain. Though the symptoms are awful the physicians are powerless to help me and it wastes my energy and upsets both the doctors and me that nothing can be done. Most doctor are not able to handle failure well and often take it out on the patient in subtle and less subtle ways. This was a difficult lesson to accept.
There are two new drug options for pain treatment I know of but one is a long shot and the other has not emerged from trial. The first is called prialt and is a non-narcotic derived from snails. It has to be administered very slowly (to prevent psychosis) and hopefully by the end of the summer I will have a sufficient dose to determine if I am deriving any benefit. Luckily it can be taken in conjunction with morphine
Blocking pain so my mind can focus on my interests or tasks is a skill I have built over time. My first six months in severe pain were so overwhelming because I remembered so clearly the rhythm of the life from before. With time that faded into blurriness less cutting to recall. And with time the pain becomes more a presence, a dreaded enemy, I want to outwit than a completely immobilizing force. With every increase of pain, I consciously tell myself to focus, to concentrate harder on any activity so the relative intensity of the pain would diminish. Integrating the constant body wide pain into every activity is like having a cussing, stinking, handsome man holding a wooden board, covered with a thousands of pins, banging it against my body while I am trying to read the New York Times. Over months, the only change is his level of foulness, the sharpness of the pins, and the frequency of insertion. But at least there is variety. I picture the guy as handsome because deep down I can’t stop looking at him and wondering what makes this guy/disease tick. I find the randomness of it bizarre.
I have learned somehow to work around the obstacles presented by the base level of pain and fatigue. They substantially impair but I can still get something done. I focus as best as I can on having as productive, peaceful and on occasion a joy filled life as possible. To do that I had to substantially scale back my goals for my life in parallel with my diminished capabilities. I studied history and knew that in 1900 Americans lived on average only until forty-seven; I was versed in details of the Holocaust (7,000,000 Jews and Gentiles murdered), the Civil War (600,000 dead), the Siege of Leningrad (900,000 starved to death). The relatively soft life of a post WWII America is a new phenomena. I have a gift of life and I do not think I am owed more than that. I was lucky I was raised by my parents and have been given such bountiful drive and intelligence. When I was physically healthy I swam, I ran and I cycled and pushed myself as my capabilities diminished. I took advantage of my gifts and did not take them for granted.
I have my choice to keep on comparing myself to my living peers, and admittedly in my weak moments I do. But in the deepest analytical recesses of my mind where I think a more accurate truth resides I believe it is terribly unfair to just consider my living peers as, “reality.” I hate the situation I am in, but I need to focus on what to do about it. It is ironic that since I have had this damn problem to deal with starting at an early age, I am equipped to fight in a situation that most people crumble or in some way, give up. I go on the offensive. The pain generated by this disease backs me into a corner. I want to make the best of every moment and self pity and victimhood are a waste of energy. They make me even less welcome to the world.
I realized, over the years, there is a terrible cost to mentioning my symptoms. Everyone is so stressed, they have little capacity to listen let alone to respond to a situation on the scale of difficulty like mine. Mentioning it creates a distance . . . a barrier, I don’t want. If I speak out, I risk losing friendships. The cost is too great for me. We all have our strengths. In these difficult times, facing the pain alone and without an ally is difficult. I invented one.
The wail of pain barely escaped my hands so tightly grasping my face. I need to be held, but I have not had a boyfriend (I am gay) since I was forty-three. I looked up one night years ago and saw the moon, smiled and Lunar was born. He is almost 5'11 and has a lean but muscular body. He speaks almost exclusively through his touch. One arm is gently draped around my waist as he holds me close. He softly caresses my forehead and face through their distortions of pain. I imagine feeling his rough skin and looking up at his handsome bearded face. He smiles wryly and his eyes glow luminescent green with flecks of yellow, like the harvest moon his name inspires. For a moment time stretches out for me and decibels of pain seem spread into a wider arc becoming more tolerable. The loving, positive emotions, generated through this image of a man holding me, are real. Ironically, the disease, fibromyalgia, sends out pain signals for stimuli that as solid as Lunar. They are fake yet still debilitating. Irony is that Lunar is equally fake yet re-habilitating. At times I am sort of using one false stimuli to fight another false stimuli.
I am determined to retain as many components of my life as possible. Watching my capabilities slowly drip away is heart rending. It is not a massive loss that you mourn once. I would prefer to have lost a leg than to deal mourning fresh sorrows as I walk less. I use to swim up to two miles a day and now I fear getting in a pool. I loved to walk miles and miles. To explore neighborhoods by foot was a regular activity. As a guideline, two blocks on crutches is manageable and anything further risks a scene. I have used crutches since I’ve was thirty-one almost continuously. I have a wheelchair and can no longer travel on my own. For my fiftieth birthday I spent four days in Las Vegas followed by three weeks in bed. It was worth the cost. Vegas was my first vacation in ten years.
Living the life of a HIV positive gay gimp (I am not differently able bodied) in constant pain certainly has its moments. Though I think it varies substantially by where you live, in major cities there is a certain hierarchy to the social life based by age, income, sexual preferences, organ size and HIV status. The presence of the boys . . . my aluminum companions (forearm crutches) brings my desirability level phenomenally low. I believe I scare guys since I remind men of the times when AIDS inevitably killed. I see the fear and discomfort in the expressions of men on occasion and it depresses me. Others pretend I am not there.
It took me years to realize that these men are rejecting my disease . . . not my personality. I think straights are less disrupted by pain and disease since they interact more with seniors and are kept grounded by their kids. I am defined externally by the boys and I do not have to say a word. If someone brings up the subject of my disability or illness I will briefly answer the question but perfection does not come with aluminum.
Living with an illness at fifty, without an existing support network, is complicated. The boys ended my dating possibilities and made the prospect of developing gay friends hard. When I first became positive (my immune system is fine), I joined a group for men with the same status and when I spoke I occasionally talked about my pain. After six months in the group I was asked to leave. No one in the group had HIV symptoms and since the pain was not HIV related they did not want to hear about it. When a friend told me this I started to laugh and thought perhaps the group should have been defined for healthy poz men only or maybe just for the compassion-lite.
Still, rejection by the gay community caused a deep wound. In a multi day flare up, all the methods I use to lessen the perceived intensity of the physical pain and seal up the emotional pain dissolve like a stick of butter in heated pan. And the rawness of repeated rejection is felt in full force, almost as if it were fresh and new.
Here is a list of the other “sticks of butter wounds,” I contend with. Each is immobilized by the cool logic of thought and of therapy but when melted by intolerable pain releases fetid thoughts and memories.
• Family genes of depression impacting severely the lives of several generations until effective medication was developed. I did not understand what it was like to feel normal until I was prescribed one.
• Emotional abuse by a relative. Ritual verbal humiliation at large family dinners as starting as a young boy with no adult intervening. Dinners were twenty times a year for at least seven years.
• Though my parents ultimately had an incredibly happy marriage, they first twenty five years were hard. As immigrants from the middle east born to privilege adjusting to middle class life in New York City with two young kids and no support system, they had a lot to assimilate and manage. Between my depression and their transition those years of childhood were rough.
• Difficulties with doctors. There are some who have personality issues and who are awful communicators. I had one who was confused by my symptoms so I was informed it was all a psychiatric problem. I was accused of faking my diagnosis of multiple sclerosis and appendicitis just to get attention. I feel I have been treated with disrespect so often that I fear interacting with the medical system.
• One almost fatal suicide attempt at twenty followed by experience in a padded cell and a rehabilitation program living with mostly schizophrenics. With the help of medication I returned to college within a year.
• A second almost fatal suicide attempt at thirty-seven. My physician did not mention to a patient with depression problems that the steroids they were treating me with for multiple sclerosis can cause severe mood swings. Not realizing a chemical was making me worse. I overdosed. My parents, aunt and uncle waited in Florida, crying, for the doctor to tell them if I would live. The physicians were expecting brain damage based on the concentration of methadone in my blood. I proved them wrong when I woke up from my coma and told finally my mother that I was gay. I figured since she was glad I was alive, it was as good as time as any to come out to her.
• There is greater than a 50/50 chance I was raped. I hope my mind keeps the details of this event sealed. If it happened, I was seven or less and I have no desire to be aware of the details.
• And finally, a man I let stay in my apartment, who I held the night before and comforted as he cried about sadness so deep stemming from his rejection by his Mormon parents for being gay got into my medication (I was taking pills at the time). while I was asleep. I found him on my couch in the morning with his eyes rolled up. Three days later a friend who comes to console me falls asleep at my side. He speaks of the death of his two cats and of his mother. We talk about how we love each other as friends. The next morning I could not wake him. The ER Techs tell me he died and the police say I should sit in the hallway. And all I can think of is of two dead men one shattered and with no chance to live life and the second so vibrant that he fit in two minutes worth of experiences for each minute of life. As I went down to homicide to start the process of clearing my name, I told the police I wish I could die instead of them. Instead, I was left confused, grieving and deeply horrified.
Constantly dealing with the intensity of my disease is hard work and it is really best for me to get away from it as much as possible For example, it is much more fun to talk about a vacuum named Chester, born in Chester New Jersey, whose voluminous chest expands to suck all the dirt, dust peanuts and raisins. This is much better than the “new Sears appliance.” Visually humorous imagery, inventing characters can make my experience less draining and more fun. Is that fragrance of 420 floating from Chester’s pipe?. Has he started to get the munchies already?
I know my reality is rather unpleasant compared to that lived by most Americans. I need to be aware of my reality, conscious of it but I do not want to spend my time living in it because it sucks. When I was a kid, I loved to play with my colored wooden blocks. I was transported into another world where I could imagine and be in control of the environment. If my current reality is especially awful, it is time to go shopping and find a new one to play in.
I create my elaborate “play lands,” to entertain myself. I have done this mostly on my own but with occasional help from friends. I like observing people and it is fun devising a situation that reflects some of the humor of human behavior. When I am struggling, I visualize myself in one of the play lands and try to concentrate on the silliness or the stupidity or perhaps the accuracy of perceptions. I need Lunar when I am lonely and in pain, but mostly I need to smile and try to make others smile as well.
In psychiatric terms my shrink labels it “dissociation,” but considers it a positive reaction to my negative circumstances. I have the capacity to switch back and forth from discussing the yuan dollar exchange rate to admiring the virile quality to Chester’s roar as he works aggressively to picks up the remains of the Trail Mix I dropped by my bed. And when I go upstairs in the morning, I see the sun reflecting off of his royal blue shell. My house mate told me he is dating Swiffer the mop. I smile and usually go outside to get my financial paper.
So let’s start with garden play land. On a nice day I sit much of the day outside alone reading. I want some company and usually have to invent it. Daddy Squirrel runs the backyard. I call him that. On my good days I sit at a table reading and watch this squirrel, chasing pretenders to his throne, jumping from the garage to the trees, then a fence, and finally on to another roof of a nearby house. Daddy Squirrel rules. Once, I was reading my book alone and he was sitting on a branch above me bitching me out in squirrel chatter. Daddy is a dominant. He needs some miniature leather gear or at least a cool pair of shades.
A couple old trees in the front of house chatted about some crows that hung out among their branches for several weeks. Nelson, the elm, was not amused by the noise. Crows do squawk. Nelson also remarked about the shit they leave. Melissa just wishes it would rain more frequently for personal hygiene and also because she’s thirsty.
Trees, being stuck in one location for decades get to build quite a network of acquaintances. Melissa is contemptuous of the idiot owners of the houses and their obsession of perfect green lawns with no brown spots in a semi arid climate. If the residents devoted a third of that energy to nurturing the trees, they would be much more attractive and valuable property but noooo.
And these crows . . . incredibly territorial, not very educated, repeating the same arguments over and over again. They’re so boring. The good thing about them is they bring ‘tree news’ from afar. All the oaks and maples want to hear what’s new on other streets. Trees trade info with birds. Info on the location of insects for them to eat as they gossip.
Another playland of mine started out as a joke nickname, “Quadroped.” It evolved into a crutch and wheelchair using disabled superhero who, in order to access his ability to fly needs to trip three times in a row. Quadroped is a superhero with issues. He is sexually confused. Quadroped is trying to reconcile himself to his role as a disabled superhero and is trying to get even with his childhood nemeses, BabyUgly. When he flies, men and women consider him hot (he becomes muscular and is wearing a stretchable nano material that constantly changes color. But when he is on his crutches he is often treated poorly. Still, carries on his duty to protect his neighbors, and hoping one day he’ll get laid.
Finally I can replay in my mind, the 57th Annual Televised Pain Awards for Individuals in Torturous Pain. You first have the arrival of the nominees on the red carpet, often blood stained from wound of various types and commentary on the outfits, bandages, and latest fashion in wheelchairs artificial limps and crutch wear. There are few categories since the candidates need to get back to bed, or on rare occasions die. The award categories are: Stud who is Brave; Regular Guy who is Brave; Geek who is Brave and for Humor Stud who is Whines. Boy who is Brave; Babe who is Brave; Woman who is Brave; Girl who is Brave and finally Rollerblader with best skid marks not in his underpants.
And the winner of this year’s Geek who is brave award is John Conrad. He saved a fourteen year old boy Eric Joseph who was texting and stepped into a crosswalk with a red light. Unfortunately, John then lost his balance, tripped and slammed into a moving Prius, breaking his pelvis into dozens of scrabble-like pieces.
John clears his throat. “I would like to thank the Academy for recognizing that it is the strength of our hearts and our minds that determine the actions we take and yet it is often our body that determines how we screw it up. Don't trip and be smart when you indulge especially since certain pleasure activities can become addictive over time. Or you may end up like me . . . feeling each day that a Mickey Mantle's slugger bat is trying to commute from its entry position in my butt to the higher elevations of my mouth. But since wood has fiber and that bat is guided by an Anatomical MapQuest I have no reason to worry. Sustain Insane Pain!!!! Sustain Insane Pain!!!! Thank you for this great honor.”
Do play lands help? Yes. I have often got lost for ten or fifteen minutes in a flare up trying to figure out how to expand the story. And even when I am at my base pain level it helps since by 3 or 4 pm the fatigue from the disease and the pain has wiped me out so much that my concentration starts to diminish. I need to smile and reassure myself and having the play lands nearby is wonderful.
Pain flare ups have a signature pattern. I usually have some inkling in advance . . . maybe an hour . . . maybe as little as fifteen minutes, that something is up and that I better prepare. If I am not home I get there fast, change into my bed clothes, make sure I have what I need from the kitchen and try to relax. I go to my room and it becomes my refuge. And that conceptually is really important to me. My room is covered with reminders that make me feel special somehow and I desperately need that during these difficult hours. There are a couple of people I can text and my house mates and my mom will check up on me at least once a day. I can shut down the “pleasant expression,” I try to maintain among people that hides spikes in my pain and channel the mental energy to increase my blocking capacity.
Stress and sometime physical activity account for setting off most of my flare ups of pain. With emotional stress, it is odd that at times I can feel calm but (as I understand it) the volume of some hormone or chemical produced has increased thereby triggering a flare up. These events are a body wide increase in pain from headaches, a to muscle aches in a variety of different textures.
Ironically, as I mentioned before, the pain can get so bad that it is impossible for me to lie down. The added pressure of the mattress, and I have one that is very, very expensive, against my body can send the pain beyond my tolerance point relative to most is rather high I would imagine. I marvel at how deeply the pain penetrates and how strong its presence is during a flare up. My scalp hurts; my stomach and abdomen are always inflamed. Breathing becomes a challenge: inhaling a large intake of air leads to sharp pain in the cartilage of the breastbone. My thighs and heel can become so tender it requires two pillows to angle the legs so the pain is tolerable. I sometimes cannot place a sheet on my toe because the weight causes too much discomfort. My back muscles, rebel against the constant pain and knit themselves around my spine so tightly I swear I can feel the needles at work.. The end result is a hand with an index finger pointing up at me.
I sometimes visualize my pain as this warped experiment conducted by Wednesday from the Adams Family. She is operating this massive old fashioned electrical switch and once she connects the circuit a sophisticated program comparable to what the quant jocks create for trading on Wall Street executes. I am then deluged with an insanely complex mix of pain messages throughout my body. And Wednesday sits there with her pigtails and luminous black eyes noting my extreme discomfort especially pleased at the results.
Any multi-day flare up requires an all out defense. And the physical pain is only part of the challenge. Flare ups that last over three days or more are dangerous because of those “stewing multiple melting sticks of butter”. Previously sealed, stored memories return to the frying pan at the moment an already flammable vat of pain is eating away at my self . . . my identity. Battling this situation is completely consumes oceans of physical, emotional, and spiritual energy. I try my best to not experience the pain as a character flaw but after fifty hours I usually fail. Still the longer I hang on the better off I am. I call on Lunar and he is vigilant. I try to focus on the gentleness of his touch; his thoughtful green eyes.
I want to protect how I value myself . . . and my analytical way of decision making, my kindness and sense of humor. I want to continue to treasure the personality characteristics that matter to me. My goal is to keep my self respect and appreciation of my good dorky and odd qualities I desire to limit this flare up’s impact on my mood and my attitude and the way I view my personal experiences. It has this capacity to color and infect memories and dreams so they what is left I consider repugnant refuse. I do not want to let that happen.
My personal goals have adjusted to capabilities and I focus on learning as much as I can each day through reading and my own writing. I would prefer to socialize and to date, to fall in love, to work and to have sex and make new friends. Realistically though, I keep in touch with old friends, reading the publications I subscribe to thoroughly, or study history, read biographies, and google my interests. The point, for me, is to learn something and to gain knowledge and perspective. I have always found learning in a dorky way joyful and recently I have ramped up my volume of study.
Still, I have a complex set of emotions to balance. I feel at times I am both masculine through my courage and half of a man in the way I am unappealing to men for romance or play. It bothers me that sometimes finding a friend to talk to who obeys the laws of gravity is difficult. My friends are kind but it takes strengthen to listen. I downsized my goals into something I could work hard to achieve so I can have a sense of accomplishment. My dreams I try to keep distant since it is too much a reminder of what I have lost. I am proud of these painful decisions since I have been able to step ahead though the phrase “move on,” is too strong a term. I believe in God but do not count on him to make me well. I keep on telling myself “Why not me?” I accept the course of events that lead to the decline and I do my best.
On a regular day with base pain I can walk around outside the house, perhaps go off to Starbucks for some coffee. My body hurts but I can keep the discomfort invisible to others while I am out. I can use my crutches and treasure the deep penetrating sunshine that comes with living in the Rockies. If the pain rises beyond the base level signaling a flare up, I need to get to bed and be in my refuge. If out, I return home immediately to insure I drive as safely as possible. I want to keep private the impact of the pain on me and do not like making scenes.
Day one in pain flare up is relatively easy. Though my body may be in extreme pain, I usually can peruse something. Reading is my best escape. I imagine being present when the decisions of history were made or where the battles, determining the political landscape for decades, took place. Reading provides me with a way to feel awed and relevant when my disease pushes my emotions in the opposite direction. My usual selection though requires concentration and to fight pain when my concentration starts to diminish I turn to my beloved Harry Potter books.
JK Rowling created a world so comprehensively detailed than it is still possible for me years after reading them for the first time to discover a new layering of information connected to an earlier chapter or book, or to find new inspiration and understanding in the actions of the main characters. Hermoine, Harry, Ron, Neville, Luna, Ginny and Hogwarts have gotten me through hundreds of difficult nights. I also write emails to friends or glance at my favorite web sites.
On day one, I may feel a bit frustrated that I have to deal with a repetitive useless event that just reflects the screwed up chemistry of my brain. I am consistently able to keep my attitude positive and stay calm. I am confident I can ride the wave of the pain as I have done so many times before. I think about Chester and muse about Quadroped going out on his first date. I will debate what Nelson and Melissa think of violent thunderstorms with lightening. Yet I know that as the hours past “thirty,” the effectiveness of my skills are under a siege of pain and become like waves of the North Sea battering the dykes of Holland that prevent massive flooding. I am positioned behind those doors feeling the onslaught, uncertain, resigned, and just wanting resolution.
On the second day of the flare up, I start to psychologically wear down and begin to wonder how much more of this I can take. Lunar doesn’t caress me. I still feel pride but some dark memories start to seep in and start to put myself down by the fiftieth hour. I ask God to end my life a dozen times an hour. I am quiet in my bedroom. If I am not sleeping I am zoning out or attempting to read Potter. I have spent some time in my play lands but the pain and memories interrupt me. I have little focus. I can talk to the shrink if I choose but these pain events are repetitive so I feel odd making the same declarations over and over again. He can’t do much more than reassure me he is there to listen.
The pain feels so brutal on the third day since I am at a loss to escape it. I hold my head when a intense flare rips through my brain. I am on a maximum dose medication to manage headaches but it still feels like a laser shot passing through my head, magically repaired of damage. Luckily the laser works occasionally and if I yelp, only Lunar is there to hear and he does not count. A part of me driven by the pain becomes convinced I am an awful person and the darkness from my past floods my thoughts. I am being punished for good reason I envy the dead at this point. The stewing continues, the toxicity increasing.
If I had a gun in front of me, it would be difficult for me not to use it. But I promised myself and God I would not make such a decision in the middle of a flare up. Any decision of this magnitude is extremely difficult and hurtful and I must be absolutely certain intellectually I cannot take it anymore and no other options are available. I pray God will release me from this burden first.
I am certain God is in the background watching and listening. I believe he is there to inspire but extremely rarely to solve the human dilemma. If he created me it was not so I could text and shop. Somehow my spiritual growth is part of the process. It is deeply internal and private. I must learn all I can from this experience no matter how much I hate it. This is one of the few ways I can make sense of this situation.
In the end though the fermenting of the physical pain and the emotional pain I am left feeling like a complete failure. I mourn the broken boy whose life flame was extinguished consuming my medication. I see the face of the friend who came to console me. I despise my incapable body and how it has reduced me without releasing me. I become angry with gay organizations for their demanding rights but not focusing on responsibilities to their own. I hear my relative mocking my eight year old masculinity framed by the silent screams of my body. When I was put in the padded cell, I understood their motives yet it was not the space for a depressed shattered teenager. Each experience and the physical pain itself echo within me telling me I am useless and I don’t belong and leave me questioning why am I still here.
I feel like I am being shredded alive, physically, emotionally, and spiritually. I want to present to God upon my death the goodness of my character and my fulfillment of my promise to him to do my best with my challenges. All that is left of me now is morphine laced hamburger meat mixed in with a touch of anesthetic. Each pain episode is so intimately familiar and yet still so unique in its ability to terrorize.
At some magical point the pain recedes to its base level. Perhaps Wednesday needs to help her mother Morticia cut the rosebuds off the stems and returns the pain program to sleep mode. Or is it a combination of genes, environment and the impact of improper toilet training on my subconscious? I am clueless though I am sure both Lunar and Daddy Squirrel know. It takes a couple of hours for me to block out the recent emotional detritus and move forward. Time is short and I have learned what I can in previous flare ups from these intense moments. I now want to forget and move on.
I had an unusual experience while a patient in at Beth Israel Hospital in NY. I was having my intrathecal device surgery and was placed in a hospice unit that had a couple of beds for pain patients. Across the hall was this man, (call him T,) who I saw but did not meet. I interacted with his family on occasion for almost a week. T got married at twenty-four and found out several months later that what looked like a bruise on his thigh was actually a soft tissue carcinoma tumor that is extremely aggressive and metastatic. Over the next two years, he and had six operations to delay the spread of the tumors to his lungs buying him time to spend with his wife and finish his PhD . Now it was time for him to die. One of his siblings stayed each night and until the last night there was laughter coming from the room. His family gathered each day to be with him. He told his wife that he wanted her to remarry and move on after she grieved for him. He fought bravely for two years and his battle was recognized by all since it was cancer. I talked to his mother and explained that when one has fought so hard for so long, though one will likely miss life, one is ready to die. In gauging her reaction, I believe my words provided her some comfort. He died a hero.
When I left the hospital after the surgery in June 2008 I had hope for a better future. I received a call from my father while in a taxi, terminally ill, telling me not to come to Florida to see him before he dies since we will meet at the funeral. He prayed that the intrathecal device will release me from the hell I was in. When he hung up, I realized it was the last time I would likely talk to him. His mind was confused and so death was imminent. My father died barely ten days after T and I knew from our conversations that he was tired of fighting and ready to go. T appeared reconciled to death as well.
I spoke to my shrink about T’s death. In a way, I was jealous of the recognition he received and the fact there was an end to his battle. Few understand my disease and many are uncomfortable with illness. There is no individual in my personal life I can turn to anymore to really speak my mind and express my fears. My house mates, though generous are overwhelmed with their own challenges. My mother just had a near death experience and does her absolute best. After a bad flare up, my sense of the layers of isolation multiply.
I survived my last flare up. Inevitably, soon I will have another one. I have some more time to learn, more time to laugh, more time to enjoy the sun. My mom asked me how I manage to not be jealous of my peers and honestly most of the time I don’t think about it. This is my fate and these are my options. They suck but they are what’s available. I have Lunar, Quadroped and Daddy Squirrel. I can learn, write and talk to mom and my friends. The flare ups are within my very stretched limits.
I can still get to tomorrow. And that is all that matters.
Dedicated to Gladys Saleh and Anne Rowling