Date: Wed, 1 Feb 2012 00:58:50 -0700 From: Pete McDonald Subject: TIME-TO-SEE-30- TIME-TO-SEE-30 Hugo handed me a scrap of paper that he had written on: "Kev, would you send an email message for me?" he asked. "Sure." I said. "What do you want me to send?" He handed me another piece of paper on which he had written a short message to Dr. Kavanaugh at the Dublin University Stem-Cell Research Center, Ireland. Hugo began: "Dear Dr. Kavanaugh, Thank you for allowing me to choose the time for my operation. You are very generous to let me have the say in what happens to me. Please reserve the Thursday before Thanksgiving at San Diego University Hospital. I signed all the papers that you sent everywhere you put an "x" for me to write, and I put them in a FedEx Overseas Delivery Envelope today, that they told me will arrive in Ireland tomorrow by mid day. I hope this will give you enough time. That means that my operation will happen in a month from tomorrow. Thank you for your cell phone number. I won't bother you unless it's important. Thank You, Hugo Ramirez I sent Hugo's email out, word for word, later that evening. ***** Later in the week, Hugo took a day off from work, and we drove across town together to San Diego University to make contact with the Department that would host his experimental surgery. We met Dr. Alycee Demoynyac who showed us all around the Hospital, with particular emphasis on the section that had been reserved and was being renovated for Hugo's surgery and recovery. "And here, Hugo, Kevin,-- you don't mind if I call you by your first names? We're all family here; so last names sound so impersonal," she said smiling. Naturally, I spoke for both Hugo and me, "Oh, no. That would help us all to feel more comfortable with everything," I answered, and I jotted a note to Hugo. He smiled and nodded in the affirmative. "Good," she said. "Now notice over here to the right. This suite of rooms is planned for the post-surgery isolation period. It covers the entire fifth floor and includes ten rooms and adjacent minilabs, physician's lounges, and restrooms." I realized that the University had set aside an entire suite of adjoining rooms in a building separated from the main hospital facilities, but apparently Hugo would be confined to two of those. Dr. Demoynyac continued to explain to us as she guided us through the rooms themselves. "You'll note that this part of the hospital was purposely chosen, because it was relatively isolated, thus especially well-suited to the sound-controlled recovery period." She led us into the two rooms that Hugo would occupy for perhaps an entire month. I hastily jotted down for Hugo, "Check out these two rooms carefully, Babe! These will be HOME for a month! Sort of like a Big Kennel. But WE have to provide your red and blue bowls :-) " Hugo grabbed at my penis when Dr. Demoynyac wasn't looking, but he missed. Looking at us and gesturing to the facilities as she described them, Dr. Demoynyac pointed out: "Sound proofing was installed, and the room itself was fitted with acoustically absorbent materials on walls and ceiling, while the floor was covered with thick pile, industrial carpeting." Then she walked over to the outside wall, "Windows were fitted with double-paned glass that does not open, and all essential equipment that might emit sound of any kind was isolated in an adjacent room, and this space that Hugo will actually occupy contains no sound-producing devices of any kind." And then with an embarrassed smile she held open the door to the bathroom and explained: "Even the sanitation was so designed that one would use it, and then leave the room, closing a sound-proof door behind. Only then would the facility flush itself." She continued more comfortably saying, "Running water was cut to a steady trickle and was not intended for showers or baths. Dr. Kavanaugh told us that Hugo would go a month--or possibly longer--with only sponge baths, isolated in this pair of "silent rooms." At that moment another physician entered the two silent rooms. Dr. Demoynyac introduced us to the Chairman of the Department of Ear, Nose, and Throat Health. "Hello, Dr. Follet. What a fortunate coincidence our running into you while I show the two silent rooms to our up-coming, stem-cell transplant patient, Hugo, (I tugged on Hugo's sleeve, and he smiled dutifully and nodded to this new person in the room.) and his friend, Kevin. Dr. Demoynyac looked at me and elaborated on Dr. Follet's roll in these affairs. "Dr. Follet supervises local researchers who have been doing work parallel with the Irish and Kansas City stem-cell research teams. Dr. Follet and his researchers will provide host laboratory services to include assistance with stem-cell harvesting and conditioning, that will dove-tail with the main implantation event." Dr. Follet reached out to shake Hugo's hand and then mine. He began by saying, "I want you gentlemen to know that while we are giving our undivided attention to this project, Dr.Kavanuagh, is managing the whole show from Ireland, and he retained final review and approval of even the most routine of preparations in support of his complex surgical undertaking." Then he looked Hugo in the eye directly and said, "I want you to know that we will tend to every detail to ensure that you have every chance to come out of this surgery with your hearing!" "This was a really a reassuring attitude that I WISH Hugo could receive directly immediately-- with no need for the delay of my transliteration-- but, then, isn't that THE WHOLE POINT?" I thought. I patiently wrote a note covering the basics; so that Hugo bowed and spoke "Thank you, Thank you," for Dr. Follet as best he could. We learned what seemed like endless details more from Dr. Follet; he told us "Even blood pressure measuring devices and the like are all silent in their operation here. We will not allow in these two rooms any device that generates a sound that could disturb the growing stem-cells. They need to be completely undisturbed for their maturation and contact and integration with the host CNS to develop." Dr. Follet concluded, "Think of this as going back into the womb, Hugo. That's where those cells are used to living and growing; so we will make sure that they get what they need." Dr. Follet excused himself, and Dr. Demoynyac continued explaining. She said, "Visitors and staff have to wear the usual sterile garments because an infection during recovery could mean the destruction of the new cells. The womb is a very safe place for stem-cells to grow." She told me, "Kissing Hugo will be 'verboten'!" I concluded that THIS presented a considerable problem for Hugo's mental health-- not to mention that MY OWN mental health would suffer too! I thought that he would need to be touched and held and kissed if not fucked during those silent weeks. (Okay! I WILL make some concession and omit the fucking, but otherwise, in my mind I didn't immediately, fully accept the No Contact rule. I made a mental note to speak with someone about my concern as soon as practically possible.) ***** As we drove back home both Hugo and I were quieter than our usual selves. I looked over at Hugo more than once to find him with a furrowed brow, bracing himself in the seat as if we were going to suffer an impact at any moment, just staring out of the window. I felt so sorry for him. I could tell that he was worried sick after seeing all the preparation that had been completed on his behalf. Hugo was a very modest person; so, I speculated, a significant portion of his anxiety was probably dealing with the recognition that he was the center of international research attention, a role he did not assume with equanimity. Why do I love my Hugo? BECAUSE HE'S HUGO! ***** By that time we weren't very far from home, but he still hadn't relaxed. My mind went wild with unconfirmed speculations: "Hugo might have been considering the physical pain involved in the actual stem-cell harvesting and then the eventual surgical entry into his skull to set the aural nerve stem-cell, tubular re-growth guides. That would sure alarm me!" But Dr. Demoynyac had explained that those procedures would be under conventional anesthesia, somehow administered in such a way as to virtually eliminate the nausea that the boys experienced. "Any and all trauma must be eliminated in the interest of the incubating stem cells that Hugo will be carrying in his head," she had said. And this is what REALLY made ME think: "Pain mitigating medication would not be administered unless Hugo's discomfort were excruciating." Dr. Demoynyac said. "The new cells must not be intoxicated in any way by further anesthetics." Hugo sure had a lot to think about. ***** Dr Kavanaugh responded to Hugo's email with a Federal Express overnight letter, quite quickly. "Dear Mr. Ramirez: We had been eagerly awaiting your reply to our recent correspondence and are extremely pleased to learn that you have accepted our proposal to address your hearing loss. We feel that we have a great deal to offer, yet we are aware of the extraordinary demands that will be placed on you throughout the process. We wish to commend you for the courage and resolution you have displayed, and reassure you that we will do everything humanly possible to insure a successful outcome and a minimally stressful experience for you. Our schedule, based on your selection of the earliest surgical implantation date, is attached. Please note that your attentive and prompt compliance with all work-up appointments and other examinations is essential to the success of our mutual project. Please note that your attention is needed at once to Attachment 3, Disbursement of Stipend Funds, in order to make a seamless transition from employment to full-time Research Patient status. Funds will be disbursed immediately upon receipt of relevant personal information. Please do not hesitate to telephone me directly at my cell number any time or for any reason. I assure you that you will NOT be bothering me! Recall it is: (800) 555-5555. Your continued commitment to our work will be supported with the utmost attention by me and by all of the research team members. I look forward to seeing you in person again one week before your implantation surgery. Yours in My Most Sincere Commitment To Your Hearing Restoration, Dr. Byron Kavanaugh, MD, Phd. Director, Dublin University Stem-Cell Research ***** At dinner that evening the boys were uncharacteristically quiet. They did chat about something that they'd discovered in Ghost Recon Predator that they hadn't realized was there, and that, apparently, made the final captures all the more difficult. Together they strategized about how they would have to address the Final Captures to win the game. Hugo opened the reply from Dr. Kavanaugh that had arrived earlier and then, after he read it, passed the letter to me. I read it and wrote a short note to Hugo on his pad, thinking Dr. Kavanaugh had sent a very gracious reply. "The guy sounds really nice. And now you have his personal cell phone number. Wow! I don't know ANY doctor who will do that... I guess you're pretty important to him." Hugo read what I said and gave me a wan smile. I picked up the pen and wrote some more, "What's wrong, Babe? What's going on with you?" Hugo took the pen and replied, "I'm happy to be starting to get ready for the operation, but I'm afraid it might not work. I didn't think too much about it failing before, but I worry now. I really want it to work more than I ever realized." I wrote back to him, "Babe, you ought to think about the fact that these people would not be coming half-way around the world to perform an operation that they have been working a lifetime to perfect, if they didn't think it had a nearly 100% chance for success. There were animal models and multiple operations on monkeys to perfect the process that they are offering to you. There simply is no more perfect medical effort on this earth to help you hear again than the one that is coming to San Diego before Thanksgiving. And I believe that we will be having the most wonderful Thanksgiving and Christmas ever. Please hang in there, Hugo. We all love you so much..." The boys had been reading the letter and the papers from the pad as we passed them back and forth. Jilder pulled a little pencil from his pocket and wrote, "Hugo. I will not leave you until we know you are okay. I will ask God in my prayers every night to help the doctors make you hear. I think you will get to hear... I think God would like that." Hugo smiled an indulgent smile in Jilder's direction, "We all hope God will help the doctors to help me hear. But if something happens, and He chooses to do something different, just please stay with me until I get stronger again." Nicky had been reading all of the notes. He wrote to Hugo, "I'm not ever going to let you be alone, Hugo. You don't have to worry. Me and Jilder will stay with you." Hugo bent across the booth where we sat and kissed Nicky on the cheek, then he leaned over the table and kissed Jilder on the forehead. "Thank you, my sons..." Hugo tried to speak those words with sounds. It wasn't all that clear, but we understood what he meant. ***** Nicky and Jilder and I started spending time on our school work. The dogs were always a happy diversion for all of us when we needed them, and daily life settled into a pleasant routine. However, if it hadn't been for those involvements, I'm sure that the boys would have been very restless indeed with the waiting. (Yeah, and honestly speaking, I would have been a mess too.) The days passed peacefully, if slowly, as the Thursday before Thanksgiving crawled nearer. ***** It was ten days before Hugo's operation. Dr. Kavanaugh arrived in San Diego and prepared to conduct a duplicate examination of Hugo personally: he would be repeating almost everything that the prep team had done. He even planned to draw more blood to reconfirm the bench mark values of myriad parameters. Thus, we were persuaded to believe that there truly would be no opportunity for error to creep into these proceedings. It was about eight one morning; Nicky and Jilder had finished feeding the dogs around seven and showed up in our school room dressed in matching outfits again, right on time, just before eight. I was somewhat surprised with their promptness. "My aren't we punctual today," I said looking up from the little pile of math papers I was marking. "Well, doesn't Hugo have an appointment with Dr. Kavanaugh today?" Nicky asked. "Yes. As a matter of fact he does," I answered. "Okay, then we gotta get our work done early, 'cause we gotta go there with him," Jilder said. "What time are you going to take him?" "Oh, I guess maybe I'll need to leave the house around nine thirty," I said. "But that still gives us better than an hour on our math today. We're going to work on fractions and mixed numbers again," I replied. "I want you guys to have that stuff down cold, and so far we're a little shaky," I added. "No problem," Jilder said. Then looking at me he said, "Good. Then we can get our work done before we have to be down at the car; we have to get there before you leave to take Hugo to the hospital." "Yes, Sir," I responded. "I promise I won't keep you too long here at school. You'll have plenty of time to get ready to go with Hugo." "That's good," Nicky said. "Cause we told Hugo we wouldn't let him be alone, and we meant it!" "I know Hugo is relying on you guys being there when he has to go to the doctor. He definitely looks for you, I can tell you that." "Well, we're always going to be with him. So maybe we better get started on our lesson for today," Jilder said, politely insinuating that I should get my ass in gear! And EVERY time Hugo had to appear for an interview or an examination or a lab session, both boys were dressed and lined up at the car waiting to be the first inside, before Hugo himself even came out. He did not go to any research-related activity without the boys being with him. They were absolutely true to their word to make sure he would never be alone, and to be sure, I never prompted them in any of this. ***** I had insisted that the boys begin their lessons with me three week before Hugo was to go into surgery, because I thought that they needed to anchor themselves in their own world, accumulating success and accomplishment themselves, in order to feel strong for Hugo. Hugo went to work every day that he didn't have an appointment, but his hospital understood what he was doing and why he was taking time off periodically, and, of course, they supported him entirely. I found that both boys were performing at fourth grade levels on most math skills. That was appalling, but sadly not unusual given the state of public education, as well as-- in their case-- the lengthy absences both boys had experienced from any educational process at all. But what they didn't know would be no impediment necessarily to learning the next lessons in their studies. Both boys were blessed with very good, analytical minds; they learned quickly and even displayed a measure of enjoyment when they'd finished their daily work. I was determined to raise their performance scores to the maximum possible, hopefully to one or two grade levels ABOVE the age appropriate expectations. I KNEW that they could do it! I required the boys to be in our little classroom for three hours each morning, beginning at eight with ten minute breaks every hour. And then they were expected to put in a half-hour of homework in their rooms every evening: they were responsible for seeing that their homework was done. I didn't get involved unless they asked for help or fell down on the job, and their homework wasn't ready the next morning. Homework was collected promptly the next school day... No fudging. (I was a no-nonsense leader in this education thing... It was simply too important to treat it otherwise.) ***** So, I have to say, life went on pretty much as usual leading up to Hugo's operation: dogs got fed, and Nicky and Jilder played with them and took them for walks in the evenings; the boys went to school each day and did homework every night; shopping and household chores had to be done-- poop patrol every day; and I even found time to read and complete the Domestic Partnership Agreement that I had been hoping Hugo would consider. Okay, so we couldn't get married; B.F.D., but we had a de facto "Marriage Corporation" underway already. It seemed to me that we'd do best if we had a little bit of legal structure--such as this agreement was--to protect the family. I'd need to approach Hugo in a way that wouldn't stress him out right before his operation-- Humm? or maybe it would wait awhile, I suppose. ***** So the evening before the Thursday before Thanksgiving, that's the evening before the day Hugo would experience the main cell harvesting and implantation event, Hugo decided he was going to mass. Now, while I'm understanding of a man's religious sensibilities, I am not likely to be one who shows up at mass... Mainly, I'm not Catholic. Of course, being Mexican, Hugo is-- big time. Now, I do realize I am the recipient of the grace so generously bestowed upon me through Hugo's religious understanding; so I'm not ungrateful or stupid, but I am still pretty much lost in the role of church goer, or, more than that, Cathedral goer.... The "Our Lady of Whatever" just didn't speak to me... I needed a more fundamental, simple-minded approach. BUT! Hugo was going to experience the most important event of his lifetime in just a few hours. I think I damned well owed my man my attendance with him at mass. So to mass we went! Along with the two boys! And mind you I don't think it hurt the boys or me one bit... Helps one get one's act together, I think I'd put it. ***** Climbing the wide, gray stone steps that led to the huge doors at the main entrance to the chancel of the Cathedral, the boys were counting steps out loud. I was certainly gratified when at the top they informed me loudly and with assurance that there were forty-seven of them! "Thank you, Jilder, Nicky." "Dad," Nicky said, tugging on Hugo's fatigue jacket and rubbing up against him, knowing that he, of course, couldn't hear a thing. Nicky reached into his jacket pocket and pulled out his scruffy, worn little teddy bear, Homer, and presented him to Hugo. Hugo looked down and understood immediately that Nicky wanted to share Homer, his special blessing, that helped him when he was in danger, and so Hugo accepted Homer with a warm smile as he mouthed, "Thank You." Hugo held Homer close and leaned down and gave Nicky a grateful kiss and a hug. Nicky smiled back, obviously pleased that he had something important and valuable to share with his dad on the eve of his operation. The two of them pushed open the great doors together and held them for Jilder and me to enter. Jilder spoke in one of his famous stage whispers: "Kevin, Look at all the candles down there. See, they're in little red jars. I think they are for the prayers that people make..." "Really?" I replied not at home at all in this holy place. "Yeah. That's what they are," Jilder went on, sensing his authority in these matters. "I'm going to light one and say a prayer for Hugo. You want to do one too?" He asked. "Jilder. I don't know what I'm supposed to do. Do you think it would be alright if I lit one to go with my prayer for Hugo?" "Oh, yeah," Jilder said giving the distinct impression that he had inside information on such matters and that I should just do as he did. Thankfully, Hugo came over to me and touched my arm nodding in the direction of seating, rescuing me from my complete loss of what I ought to do. The boys filed into an empty pew on the left, about half way down the chancel; I followed, but Hugo passed through the empty pew in front of ours and then re-entered our pew at the other end, such that he and I now included the boys between us. I can't begin to recall all of the details of the liturgy that evening, but it was all beautiful and helped us to dismiss completely the worries of our outside world. Chords from the great organ announced that the processional would commence. The congregants stood and a cross-bearing choir boy in white and red led the officiates and the choir of twenty-five or thirty from the rear of the cathedral, through its cavernous nave, to the sanctuary where the altar sat, imposingly adorned with a large, gothic silver cross, white gladiolas and shining silver candelabra. Hugo and the boys and I stood for the procession. I felt very, very sad that I didn't know and couldn't join in the song. At that moment, I was over-come with the desire to sing my heart out with my family, to say how wonderful life truly is. The boys looked around and Jilder pulled on my sleeve to get my attention: "Everybody's going to sit down in a minute and the priest will talk to us all. You'll be able to understand him, 'cause he speaks English..." "Oh, okay," I answered, just to acknowledge my need for council in these matters. Fortunately, after a while, Jilder did seem to know what to do; and when everyone rose to go up to the altar to receive the communion, Jilder whispered, "Me and Nicky can't go up yet, 'cause we're not old enough, but we could when we get older. I think you and Hugo can go," he told me. I looked over at Hugo and questioned using my eyes asking, "Do you want me to go with you to receive communion?" Hugo rose and nodded his head, squeezed past the boys in our pew, and took me by the elbow and moved me ahead of him out to the main aisle. And together we made our way to the front of the cathedral, and there before God and everyone else, gratefully accepted the elements. Nicky didn't understand any more than I did, but with Jilder's help and Hugo's guidance, we bungled through a beautiful service together that left us all quiet and reflective. ***** Coming out of the Cathedral, Hugo grabbed a small pad from his pocket and a pen and wrote down something that he showed to me in the car. "I've decided that as soon as my operation is over, I am having the black tattoo removed from the back of my neck. It's my way of saying thank you to God for the operation, whether it works or not, the tattoo is going to come off." I wrote on another pad, "Why did you have it put on you, Hugo?" Hugo wrote back, "Because I was angry at God for letting my father and mother go back to Mexico and leaving me and Jilder alone here in America. I wanted to get back at God. He hurt me." I responded, "I'm sure God will be happy that you don't feel angry any more, Hugo, because, mostly I think He knows how much the anger was hurting you, more than anything. And I can't think of a better way for you to say Thank You to God." Hugo wrote more: "I've decided that I will pay for it myself, out of my paycheck from the hospital, not from the Research Stipend. It wouldn't be a good Thank You if I didn't do it myself." "I know you're right, Hugo." I responded. And I said, "There are laser treatments that can remove tattoos, but they will have to be done in several sessions. And I think I'd ask Dr. Kavanaugh if there's any problem with taking laser treatments after your surgery." "Oh, I will. But there won't be any reason I should not remove the tattoo. I'm not angry at God anymore." And that was that! Just like that, Hugo decided his tattoo was history. He was making way for his new life... Well, we all hoped... his new life as a man who could hear. *****