â€œOh, your father died. Iâ€™m sorry,â€ they always say. â€œWhat did he die from?â€
I pause before responding. I always pause. Itâ€™s what I say next that keeps changing.
* * *
In roughly the last possible moment of the 1980’s, I was fifteen when my mother took me into my parentsâ€™ bedroom, closed the door behind her, and sat down with me on the edge of the bed. I looked at Mom, at the closed door, and then back at my mother. This sort of thing generally didnâ€™t happen. As a family we shared and shouted many exchanges in the kitchen, on the phone, or in the car. But now the door was closed. The tone set by this action was immediate and far more reaching than my mind, busy already with the transfer of lust from small plastic toys to life size girls, would be able to fathom.
“Your father has AIDS,â€ she said.
She went on to explain the timeline from when he had tested positive for HIV a few years before, and how they had planned against possible futures by her returning to school to finish her Masterâ€™s degree. But now Dadâ€™s first pneumonia of full-blown AIDS had placed him in the hospital, and they had decided to tell my older brother and me. She might have asked me if I had any questions I wanted to ask her, I really donâ€™t remember. But what she told me next I do remember. She said, â€œHe seems fine now, but you canâ€™t ever tell anybody. If later on he seems sick and anyone asks, tell them he has cancer.â€
* * *
Today I work as a clerk in a small accounting office with two other clerks and our manager. One day our manager receives a phone call. Without eavesdropping we all noticed the tone of his voice change, and drop, like the phone took the wind out of him. He put down the receiver and sat quietly without ruffling papers or typing for a moment. The other clerks and I sat working with the corners of our eyes alert for some sort of sign from him.
â€œMy father died,â€ he said. Through all the gasps and expressions of empathy from us, in a rush he was packed and gone. We were left breathless. Thoughts of work were gone and we chatted together for a few moments.
â€œWell, heâ€™s going to remember this day for a long time,â€ one clerk said sympathetically.
â€œYes, he will,â€ I said. â€œItâ€™s worse on a holiday. My father died on Valentineâ€™s Day ten years ago and itâ€™s still not the same.â€
â€œOh,â€ she said, a bit surprised. â€œYour father died too. Iâ€™m sorry.â€ She seemed a bit unsure but went on to ask, â€œWhat did he die of?â€
Ten years later I still pause and think about what my mother told me.
* * *
In 1989 there were 100,000 cases of AIDS and 59,000 AIDS related deaths reported to the Centers for Disease Control. It was four years after Rock Hudsonâ€™s death and it would be four years before Tom Hanks would star in Philadelphia. My Mom, brother and I went to the hospital to visit my Dad.
When we got to his room, I looked for the discernable change in him. Other than the foreign hospital gown, his hair being a bit greasy and unwashed, and the IV line coming out of his arm, he was my average, smiling father. I think now about how odd a moment it must have been for him, seeing us there and knowing that Mom had already told us. But it became evident she hadnâ€™t told me everything. Dad and I were alone for a moment and he asked me, â€œSo youâ€™re ok with my being bi-sexual?â€
There have always been a great many things about my parents that I donâ€™t know about, but I had always considered most of these things unnecessary to complete my daily grind. If it wasnâ€™t something I could infer from conversation without asking, then it didnâ€™t really matter. I loved them, they loved me, and let sleeping dogs lie. I nodded my head in response to his question, though it was the first I had heard of it.
* * *
After Dad came home from the hospital things were much the same as they were before. Dad was still working at the time and I continued in High School. We still spent time as most families do, but now extended vacations together were gone. We would go visit local displays of the AIDS Quilt. These details and my experiences started to appear in my writing, tiny bits in my poetry and in longer fiction works, but never the full truth. One application I wrote for a college scholarship contained a detailed description of a visit to the AIDS Quilt and the emotions I felt. But I still didnâ€™t mention Dad. My writing was the closest to a confession I could get. Even as a senior in High School in 1992 it wasnâ€™t something I could share openly. The door to the bedroom in this suburban town remained closed.
As Dadâ€™s health declined, and he was no longer able to work, a permanent IV line was placed in his chest. It was years before the successful drug cocktails of the mid-nineties, and the prospects of an AIDS patient surviving did not exist. But there were still cocktails, still treatments.
A new feature of our life was the brown boxes and bags would be delivered by medical services to our doorstep weekly. They were labeled with our last name in blocky black maker across the side, and they would go right into the refrigerator. He was slowly going blind and talked about the â€˜floatersâ€™ he was seeing, little bits of his own eye floating around inside of them. He soon shuffled around the house in his bathrobe, wheeled IV pole beside him. He had to turn his head and look from the corner of his eye through a small spot of functioning vision to see the last bits of Malt-O-Meal left in his bowl. I prepared it for him every morning before school and sat across from him, watching him struggle. He vomited often.
His deterioration and the overwhelming sense of death permeated the house. Mom and Dad came home one day and told me they had shopped for funeral plots that afternoon. Soon after that I was fitted for my first funeral suit. I attempted to escape the house as much as possible, spending time with friends and working on my high schoolâ€™s literary magazine. And slowly, like any teenager faced with a monstrous secret of overbearing proportions, I told people anyway. I didnâ€™t wear it on a t-shirt, but I told a longtime friend first, and then a well meaning teacher who pressed me for an explanation of my behavior. I was simply too tired to lie. Or perhaps that was the excuse that presented itself.
* * *
After I graduated from High School I attended the local community college to stay close to home, as much as I spent most of my time trying not to be there. Life continued, until it didnâ€™t. On February 14th, 1993, my father died in the hospital. I wasnâ€™t there. I had been there and left. Dad wasnâ€™t expected to last but for a few more hours that afternoon. I had freaked. It was the crescendo of his deterioration. I couldnâ€™t handle that I could hear him down the hospital hallway crying out over and over again, â€œWhy am I still here?â€ He was in no condition to explain if he meant â€˜in the hospitalâ€™, or â€˜in this worldâ€™. Too many drugs were in his system vying for attention. I used the excuse of driving my grandparents back to the house to escape.
â€œYouâ€™re going to regret later that you werenâ€™t here when it happened,â€ a family friend told me, trying to convince me of the importance of staying.
But it had been â€˜happeningâ€™ for years already, I was already full of regrets, and I had already seen more than I could handle. I swore to myself that however much I might actually regret it later, that I would remember that when I was eighteen I couldnâ€™t handle it, and I did what I had to do. I was at home when Mom called. It was around 4 oâ€™clock in the afternoon.
Late that night I finally escaped the close quarters of house and extended family. After driving aimlessly through the late night suburbs failed to free my mind from the dayâ€™s events, some friends and I went to the graveyard where my parents had bought their plots. We wandered around in the dark imagining where he would be laid to rest. Even after dropping them off I still did not wish to return home and went to another friendâ€™s house in my immediate neighborhood. I had previously cultivated a reputation that I would arrive unexpectedly, usually late at night. I often leaned on their entire family. It was a house where I could retreat when my own family were simply too related to me for me to stand. I donâ€™t remember what time it was but my friend welcomed me in, and we talked further into the night.
When someone dies, life stops in a way that it doesnâ€™t otherwise. Extended holidays or vacations donâ€™t even compare. No work or school, nothing, except long moments of reflection and short moments of escape. I wasnâ€™t involved in any of the arrangements for Dadâ€™s funeral, as most things had been long in preparation. I was just sent through the motions of my position as youngest son. I watched from the outside.
At the wake I was surprised to find a wide group of friends and former classmates. Many of them I hadnâ€™t spoken to since High School. I doubt many of them knew Dad had been sick. But for a moment looking around at ties and slacks that were usually t-shirts and jeans, I wondered who knew what. Not a single person mentioned anything, and no one asked me about how he had contracted HIV or how long he was sick. But no one shied from hugging me or shaking my hand. By the end of the evening I didnâ€™t really care who knew the truth.
* * *
The hibernation and separation from society that surrounds you when a close relative dies can last for weeks, but the lack of questions for me ran out a few short days after the funeral. I was fair game again. One day after returning from class the father of our neighborâ€™s family caught me out on the driveway in front of my house.
â€œHey Mike, I heard about your father. Iâ€™m really sorry about that,â€ he said. We hadnâ€™t put out an obituary notice, so I had no real way of knowing what he knew. â€œYou doing alright?â€ he continued, and of course went on, â€œif you donâ€™t mind me asking, was he ill? Howâ€™d he die?â€
Every teenage rebellious instinct in me saw this as a perfect opportunity to shatter the safe suburban world of my neighborâ€™s mind. It was an all too perfect wrecking ball, a wake up call that he desperately needed, I thought. Any risk was worth the possibility of shocking him into reality. Then I thought of my Mom. When I entered the house she was in the kitchen. She had watched the exchange from the front window.
â€œWhat did you talk to him about?â€ she asked.
â€œHe asked about Dad,â€ I said
â€œAnd what did you tell him?â€ It was an odd indirect variation of the proverbial question. I could feel the tension radiating from her. She was preparing to deal with the staggering mess I may have just created, a cataclysm that could be about to rain down upon our family.
I paused. Then I said, â€œI told him he died of cancer.â€
Mom and, unknowingly, the whole town, sighed collectively.
* * *
Less than a year later I escaped to a state college and hit the open-minded fast-forward. All suburban bets were off and I spoke freely about Dad to anyone who asked or listened. I was neither ostracized nor avoided. It was a freeing feeling, to be accepted without fear. My girlfriend held my hand at a local budget showing of Philadelphia. I shared an apartment with an openly gay friend for two years. Everything felt natural and ideas of all range were welcome. I found the liberal mindset of a college campus further out in the cornfields of Illinois than the suburbia I fled. It was the exact opposite of what I expected, but exactly what I had yearned for.
In 1996, after college I returned home for a time of distracted wandering. I tutored writing at the community college, bartended, worked retail. I slowly slipped back into the mindset of not sharing, of closing the door. When speaking to a professor at the college, and through whatever conversational byways we ended up speaking of my parents, and my Dad, she said, â€œOh, Iâ€™m sorry. How did he die?â€
Suddenly I was back in the driveway three years before speaking to my neighbor. This place had not changed, and was not ready for this, I thought. Nothing had changed.
I said, â€œHe died of cancer.â€ The momentary swish of the old comfortable glove fitting into place.
But then something new happened. Most people settled for that explanation, but she did not. She went on to ask what type of cancer, treatments, and a lot of questions I had never prepared for. After a few moments of fumbling and awkwardness, I said, â€œwait a minute. What I told you wasnâ€™t true. I lied.â€
What an odd moment this was. I had spoken â€œcancerâ€ to people before, but I had never went back to correct the lie. So I gave her answer number two: â€œMy Dad died of AIDS.â€
I went on to explain quickly where this apparatus had originated, how I had incorrectly fallen back into the cover story. I realized that I still needed to fight to get the truth out of myself, and that perhaps the suburb was not the place for me to stage this fight. Seeking the more liberal environment of my college, I moved to Chicago and proceeded to not worry about my answer to that question for another 8 years.
* * *
Two weeks before Christmas 2001, my left leg fell asleep. It tingled like I had sat oddly for too long and had cut off the blood flow, but it tingled no matter what I was doing or what position it was in. For a week. When I went to the doctor I added into the list some back pains Iâ€™d been having, and how my retail management job was hell on the body, especially at that time of year. He prescribed some anti-inflammatory drugs and in a few days the numbness disappeared.
A few weeks after Christmas my girlfriend and I were running late for a movie. We ended up stuck with the only available seats, third row from the huge screen, off to the right. And my glasses were dirty. When even a little added spit to the lens wouldnâ€™t allow my shirt to wipe away the smear, I gave up. I thought that one extra amount of blur added to the uncomfortable, blurry situation of sitting too close to the screen wasnâ€™t going to make it much worse.
When I examined my glasses later I found nothing smeared on them, and no amount of scratching that would account for the blurring. I called my doctor and after getting the name of an ophthalmologist, I made an appointment for a week later and sat back to wait.
But I wanted an answer immediately. I found a local Pearl Vision and went for a walk-in exam.
â€œI canâ€™t find any damage on the eye itself which would cause your vision to be blurry,â€ the optometrist said. â€œWithout any other symptoms, I think you should go ahead with your ophthalmologist appointment and see what they find.â€
â€œWhat kind of symptoms?â€ I asked.
â€œOh, different kinds of things, numbness in parts of the body,â€ he continued with a list of other symptoms, but I couldnâ€™t hear him for the alarms going off in my head. I didnâ€™t mention my leg tingling for a week, and he didnâ€™t go into specifics about what it would have meant.
I waited and went to the ophthalmologist, who dilated me again, and shined lights around again, and again found nothing. He sent me on to an ocular, retina and vitreous disease specialist who also dilated me, shined lights around again. He went a step further and injected me with a dye. Flash photos of the interior of my eye were taken to look for areas where the dye might leak from. These tests showed no leakage, nothing wrong with the eye that he could detect.
Numbness returned to my left leg as the blur in my right eye began to slowly spread, like a paper-thin doily slowly being lowered over my vision. Then I discovered another body oddity. When I lowered my chin to chest, my right leg above my knee would become warm. Returning to my regular doctor to report this the return of numbness to my left leg, the further blurring of my eyesight and this new phenomenon, he sent me off to a neurologist.
The rhythms of different doctorsâ€™ offices, waiting rooms, forms, questions and tests began to blur together, like visiting a long series of different grocery stores. The set of questions before the initial examinations varied little, as produce sections vary little. They always included previous surgeries, conditions, current and former medications, allergies and family history.
â€œMy Mom has some thyroid problems, but other than that sheâ€™s fine.â€
â€œAnd your father?â€ they would ask.
â€œHeâ€™s deceased.â€ I said.
I could almost see the little sparkle in their eyes as they thought they might be â€˜onto somethingâ€™, and they would walk very close to giving the game away. In these interviews I would not pause in answering the question. It was either because of patient confidentiality, or due to the dulling repetition of the question.
â€œHe died of AIDS,â€ I said, over and over. I was almost thirty and well on my way, I thought, to being able to just spit it out. In these situations, instead of me pausing, the doctor would now pause, my answer giving them a little jolt. But the glint in the eyes faded as initial blood tests had already ruled out HIV, diabetes and other easily detected problems.
* * *
My neurologist sent me off to have an MRI scan my brain. To say that the procedure for Magnetic Resonance Imaging is an experience akin to being a Twinkie, where you are the cream filling, is a little simplistic, but accurate. I was told to lie down on a bedlike shelf barely the width of my shoulders, my head locked into position with a harness. Then I was slid into the â€œgolden cakeâ€, a huge, donut-like machine with the round channel in the middle for patients to be inserted. Since I am lucky enough not to suffer from panic attacks, claustrophobia, chronic nose itchiness, or lack of anxiety medication then all the experience offered was two hours of intermittent and various gunfire sounds and kickbacks going off inches from my ears. Halfway through I was rolled out far enough that a technician could inject into my hand a medication that assists in the imaging of soft tissue. Then I was reinserted and the scans are repeated a second time.
The doctor was looking for evidence of Multiple Sclerosis, taking its name from the multiple â€˜scarsâ€™ it leaves. It is an auto-immune disorder, where the immune system targets and attacks the nerve tissue in the brain and spinal cord causing the damage to the nerves and their lining, resulting in the inflammation and short-circuiting of the various functions of the nerves. The damaged areas, or â€˜scarsâ€™, would have appeared as white marks on the MRI films. But the MRI results of my brain were inconclusive, and then followed promptly by another inconclusive MRI of my cervical spine.
With no clear evidence there was only one more test he could perform to eliminate MS as a possible cause for my symptoms. I was admitted to the hospital and after changing into my new open-backed gown, my doctor performed a spinal tap. The procedure lasts all of a few moments. He inserted the needle into the lumbar region of my spine, and while he was withdrawing my spinal fluid, my hearing drown under a rising buzzing, I broke into a sweat, and my vision began to fill with black spots. It took everything to focus on my breath as I struggled to stay conscious. Then it was over and the black spots receded and I could hear him telling me to lay back and rest. He might have told me to not move and to stay there, in that bed for the evening, but I really donâ€™t remember.
I do remember the nurse telling me I needed to stay horizontal for at least four hours. I was dressed and ready to discharge myself in less than three and a half. The pain and the feeling of compression in my lower back were immense when I stood, but my desire to be out and away was greater. I failed to understand the need to stay horizontal longer, to allow for the fluid that runs through the spinal column and around the brain to stabilize. I paid for it a day later with an incapacitating migraine that made me weep from the pain.
* * *
In the two weeks that I waited for the results of the tap, the majority of my left side was numb. My lower extremities, the left corner of my mouth, and my scalp were tingly pins and needles. The odd warmth in my right leg still occurred when I bent my neck. The vision of my right eye became entirely blurred and my left eye was also in quick deterioration. I could no longer drive, and could only read very slowly with great effort, holding the page close to my face and picking out the words one by one, much the same as my Dad attempting to find the last of the Malt-o-Meal. I was going through most of the major physical deteriorations my father went through. But instead of losing my vision and functioning over a course of years, it happened in months. Instead of having a burden of an illness whose name he could not share with many, I had a worsening condition without name.
My Mom, Step-Dad and brother drove in for the results of the tap, almost ensuring the results be heavy and serious. My mother and I went into the doctorâ€™s office together. Across from us I could barely make out the features of my neurologistsâ€™ face. He told us that the lab results indicated that I had a â€œmild case of Multiple Sclerosis.â€
My mother, with her nursing background, had until this point been absent from the process of my doctor visits and tests. She had been subjected to trying to get answers to her questions from me, and had to settle for the non-medical drivel I would or wouldnâ€™t remember when I talked to her on the phone. It must have built up an intolerable level of frustration within her. She immediately jumped in with questions about stem cell research and the latest theoretical treatments she had already done some reading on, trying to determine if the doctor was credible and met her standards.
I was only thinking, â€œMild?â€
My neurologist suggested fast action, starting with an inpatient treatment of intravenous cortical steroids to stop my current attack, or â€˜exacerbationâ€™. I would be admitted to the hospital that evening. My Mom lasted about halfway back to the waiting room before she broke into some soft tears. As we picked up my brother and Step-Dad, I hugged her and said, â€œIâ€™ll be fine, Mom,â€ even though at the time Iâ€™m not sure I even believed what I said. I was still in whirlwind mode, and wanted to comfort her. It was an odd moment while waiting together for the elevator, very much like learning about Dad. Everything is the same, and in the same moment, nothing will ever be the same.
I was simply pleased to have a result, and that the four months of testing and having my symptoms get worse was over. I could move forward, and getting onto the elevator I whispered to myself, â€œHere we go.â€
* * *
Like my Dad, my condition does not have a cure; it had an abundance of treatments, each with their own side effects requiring other medications. The cortical steroid side effects are numerous, including sleeplessness, mood swings, a general manic sensibility, and severe constipation. It is also a drug which must be tapered off, so after the five day of IV, two weeks of slowly decreasing oral doses follow.
The week after my first five day hospital cortical steroid tour I â€˜recoveredâ€™. It felt like slowly going mad, as I hadnâ€™t really slept or had a bowel movement in a week. I was physically drained and couldnâ€™t determine if my muscle stiffness resulted form the steroids, my week of near inactivity, or both.
At that time I also began my continuous, weekly interferon injection treatments. The interferon was another medication aimed at reeling in a malfunctioning immune system, which was accompanied by its own set of side effects. It causes symptoms similar to the flu, complete with chills and fever, and lasts for almost exactly 24 hours.
But I happily found a few days after my discharge from the hospital, my vision did return. I remember looking in the mirror one morning and being surprised by my own face.
â€œHello, stranger,â€ I blurted out.
* * *
Multiple Sclerosis is a disease that strikes everyone differently, making the experience, symptoms, treatments, and life, different for each individual that battles it. So different that it seems strange to call all its instances by one name. But many generalities apply to all of those diagnosed. As a â€˜newly diagnosedâ€™, just as for many chronic diseases, you are informed quickly of celebrities or well known people who â€˜have itâ€™.
Perhaps a bit more slowly you also learn how the question, â€œhow are you?â€ will never be the same. It will never be light again. As a greeting it will range in heaviness or well-meaning but will never, ever, be the toss-away greeting it once was. Unless the person asking doesnâ€™t know.
* * *
After my recovery period I returned to work. My job at the time as a retail manager meant I spent time all over the two-level store, fulfilling various functions, and interacting continuously with all employees. So again, as at Dadâ€™s wake, I wondered who knew what. I had been gone for almost two weeks; there must have been some talk. But I was still entirely too disoriented to really care, or to be of any worth as an employee, much less a manager. I tried anyway. And I also applied for short term disability. Chronic diseases teach you very quickly the importance of health insurance, and of diligent recordkeeping.
I never particularly enjoyed my job, and my new situation lent some urgency to finding new, less physical demanding employment opportunities. After some diligence, lots of faxes and a few interviews, I managed to parlay my prior office experience to land my current job. But the MS didnâ€™t care, and after a visit to my neurologist a few months after starting my new job, he decided on another course of intravenous steroids. But this time a nurse would come to my apartment and hook up an IV line in my arm, and I would be able to stay out of the hospital for the full course of treatment.
The nurse arrived with all the gear necessary for the full five day intravenous run of steroids. All the supplies were tucked into a normal brown bag with my last name written across it in black, blocky lettering. It looked exactly like the deliveries we used to receive for my Dad. As she walked me through the procedure for administering the steroid and basic infection control, I held back as long as possible from telling her I may be a bit rusty, but I had some experience with home IV care. The week of steroids outside of the hospital was a bit more humane, but I ended up taking some time off from work anyway, as the side effects still overwhelmed me.
* * *
I had spent much of the time since my diagnosis thinking of Dad and his trials, and also doing the basic life reassessments someone in my position must go through. The similarities of the details of our experiences often stand out and perplex me. My father being killed by a disease destroying his immune system, and his son with a disease resulting from an over-activity of the immune system still seems like some strange Shakespearian clichÃ©.
I also often thought of the family we had lived close to in our old neighborhood. The same family I had sought out at the end of the day Dad died. They had helped me through many rough times I had dealing with Dadâ€™s illness by just being there. I had not spoken to any of them for eight years, but I felt a strange need to thank them. I felt the need to express that I realized how they had helped me, and now I needed them again.
Returning from visiting my Mom last Thanksgiving, I passed through our old suburb. I decided to stop by and see if they were living in the same house. It had always been my schtick to arrive unannounced, and I always felt this behavior had no statute of limitations. As I walked up to the front of the house I could see some of the same artwork hanging on the walls through the front window. I smiled and hoped that everyone was still there. Checking the time it was late enough that I wouldnâ€™t be interrupting dinner. When the door was answered, â€œDid I miss the food?â€ sprung first thing from my mouth.
I was unsure that any of them knew of my diagnosis at that point, although it was possible that word might have somehow spread back to them. Their reactions and their â€˜how are you?!â€™ didnâ€™t have the altered inflection and at the time I showed no outward symptoms. For the two hours of my visit I decided I wouldnâ€™t say anything, and after being there a few moments I couldnâ€™t. As the evening went on I became almost euphoric at the feeling of being a person without a condition.
It was a unique gift they gave me, where suddenly I was just myself again, and not because they were new acquaintances who knew nothing of who I was. This family, they knew me, my history, my faults, and suddenly the one thing that had become so omnipresent in my life for almost a year, that had colored my days, fears, dreams, every waking moment, was gone. The matriarch of the clan cried tears of joy at me, saying, â€œItâ€™s like my sonâ€™s come home.â€ I wanted nothing of the other types of tears, nothing of sadness, of heavy hands placed on knees or shoulders with looks of seriousness, especially at this, their holiday family gathering.
After the initial rush of nervous energy fled, the long holiday and the fatigue of MS dragged my energy level down and I had to leave. It was amazing to step out of time for that evening, to step out of my current self, but still into a warm environment that loved me. They proposed and proved in one fell swoop the argument for the idea that your disease, your condition, does not define who you are.
* * *
Back in my accounting office, a co-workerâ€™s mother suffered a heart attack, never fully recovered and died in the hospital weeks later after multiple bypass attempts. Again the office filled with thoughts of life and death, loved ones and the reflection on personal days of loss. Thinking of this, thinking of Dad, I called Mom and asked how she would feel if I wrote and published our story. She had remarried, taken a new last name, and moved to another state, but it was another thing to out your father in print without bouncing it off another family member. I kept thinking that sheâ€™s still out there, out in the same world that a short ten years ago was overflowing with hate and fear.
â€œThere are things I donâ€™t care to share with people,â€ she told me. â€œOne is that my husband died of AIDS.â€ But she still seemed to think I should write it, and I promised to let her read it before I submitted it for publication.
â€œAlright, go ahead,â€ she said. â€œBut you might want to ask your brother.â€
So I called him. He still bears the family name, still lives in Illinois, and works in the public school system. He was uncomfortable with the idea, able to foresee possible difficulties it might cause him, but seemed open to the idea that I go ahead anyway, also letting him read it before submission.
* * *
It is difficult to say if minds have moved as far as I would like them to in the ten years since Dadâ€™s death. In 2003 the Joint United Nations Programme on AIDS estimated some 40 million people have AIDS and another five million have HIV. Almost a million of those reside in the US, and even with modern drug therapies still half a million estimated deaths in 2003. But other than the occasional story on Africaâ€™s exponential increase of infections, the disease has vanished from media coverage. The overriding, irrational fears of AIDS have become overshadowed by other fears of war and terrorism, other diseases like SARS and Mad Cow. But I still wonder, would the conversation in the driveway with my neighbor go differently today?
I know that I myself still havenâ€™t moved to places Iâ€™d mentally like to go. But Iâ€™ve made some strides in my dealing with Dad and my MS. Iâ€™m beginning to understand that I am not alone in this experience, that 18,000 other people in Illinois alone share MS with me. Iâ€™m working against my own fears of disability while waiting for the next, more effective treatments.
But even though my answer when asked the question of how Dad died is now permanently ensconced in the truth, I still give slight pause when Iâ€™m asked. Iâ€™m still unable to ask Mom some lingering questions about Dad, or determine if I should really care about the answers. But I can still get the answers I really need from inference. I had once asked Dad once why he didnâ€™t also purchase grave plots for me and my brother when they purchased Momâ€™s and his.
He said, â€œOh, youâ€™re going to be far from here by the time you die.â€
He was telling me that he had dreams for me and my life, as big as my own hopes. I know that if he knew me with MS, his dreams would not be any less than they were before.
I now imagine the moment when my first child comes up to me and asks, â€œHow did grandpa die?â€ The child will have a basic understanding that his own father has a condition. That his Dad gets very tired sometimes, and sometimes feels â€˜ickyâ€™ because of his medicine. What that world will be like for the child, how much fear will be in it, I donâ€™t know. I do know I will look in that childâ€™s face and will see a great deal of myself and Dad. I will smile a little at that. I also know I will probably pause before I answer. What I say afterward I have no idea.