BY HIS OWN BLOOD
This article is comprised from excerpts about the death of my father, Doc Montandon, from my book, By His Own Blood. This true story that I tell about my father and my family is based on our personal experiences and court records. However, I have changed the names and some identifying details about many of the living individuals and existing businesses that are mentioned in the book. Any similarity between fictional names and details and real persons is strictly coincidental. The book discloses the incredible true account of my father's horrific death and my personal search for answers and healing. In the story, my father, a man of great moral character and strong religious beliefs, was given a blood transfusion tainted with the HIV virus during surgery and was refused treatment after having developed AIDS. To make matters worse, the ordeal was covered up and medical assistance to care for my dad was almost impossible to obtain as it was the time of the very beginning of the AIDS epidemic. Doc, a retired Texas cotton farmer, suffered terribly and died not knowing why or how he was infected. The impact of the story is as recent as today and as reminiscent as my days growing up on a west Texas cotton farm in the 50s and 60s.- John Montandon
So, how did a boy raised on a cotton farm in the Rolling Plains of West Texas, educated at Texas Tech, a co-founder of several business media companies and now an author currently living in Los Angeles, end up in our nation's capital as a guest speaker in 2012 at the world's largest gathering to speak to an audience about a personal experience related to HIV/AIDS? The journey with my book began shortly after my father's death when I started making notes for what I thought would, one day, become the story I felt compelled to tell the world.
Let's start at the beginning. I wanted to write By His Own Blood about my father's death because it happened in a way that was deeply disturbing to me, my mother and brother, and to all of the many other people who loved him.
What made my relationship with my father so strong and unique? He did all things necessary for his family. But what was it about him that remains so deep in my mind many years after his death? And why his death, a tragedy of trials that goes beyond the absurd, sticks to me, impossible to shed. Many of my memories are faded, but his are clear.
My father was a product of America, son of immigrants, tenacious people with the will to survive and to better themselves. A story told in any part of our country.
Daddy was handsome, with a perfectly proportioned physique. He was vain in his appearance and he often joked about it, particularly about his perfect teeth and that he was always well groomed. He lived his own life. He cared little for the everyday conversations. He did not require social interaction with other men, yet he had many friends; friends of different faiths and different races. He said he was shy, and I suppose he was to a point. But for his generation, reserved is a more appropriate term. His manners were impeccable. He believed his thoughts were personal, and to express himself was rude.
He was one of the few people I ever knew who did not veer from his principles. He believed in honesty and expected the same in return from those with whom he dealt. He was a skilled negotiator in business, but always prided himself on being fair and on making the best transaction possible. Yet money was not his god. He had no interest in amassing money beyond what was necessary to survive and to maintain a safety net. Greed and envy he considered vices and were against his religious beliefs. I think his genuineness was his main feature.
I see him in the bright Texas sunshine, smiling warmly. I can feel his hand. I can smell him. He emitted such a steady calm and a genteel demeanor that it was always a comfort to be with him, as I still am.
In some ways, he was like a nice fox, with his innermost turmoil in check. I never thought he had the same wants, needs and troubles that we all have. His quiet strength and genuine warmth, without braggadocio, gave me unspoken guidance. He demanded respect without having to ask for it.
When I left home for college, it was a breaking point for both of us. He knew the day would come when he considered me an adult and his work was done. He had been an example, one that I have tried to emulate but know I could never duplicate.
I loved him dearly.
On April 19, 1989, my wife, Karen, and I drove into downtown Manhattan and checked into the Waldorf Astoria. We had been in Toronto a few days earlier for a business meeting before driving on to New York City for a much needed break.
Over the next several days, we took in a couple of Broadway shows, climbed to the top of the Statue of Liberty via those narrow stairs inside, and ate at some of our favorite restaurants. It was all good, except for the fact that Daddy's health was getting worse, and we had no clue why. No one knew what was wrong with him. His long-time physician and friend kept telling Mama and Daddy he was just getting older and that his symptoms were to be expected. Daddy did not buy that story and was continually annoyed believing that something else had to be going on.
I was relieved to take a break from all that uncertainty for a few days. Karen was, too. She had stood solid during the last three years of Daddy's suffering, as she'd done during other difficult times that both of our families had gone through.
The day before we were to check out of the hotel, we were saying goodbye to some friends who had met us for a farewell breakfast. It was April 22. Our waiter came to the table and said, "Mr. Montandon, you have an urgent phone call," and handed me a note with a number written on it. It was my brother's home number. I immediately went to our room. Karen was right behind me.
My hand was shaking as I dialed my brother's number.
"Hello." It was his distinctive Texas drawl.
"Gene. It's John," I blurted out in a nervous breath. "Did Daddy die?"
"Are you sitting down?" he asked.
"I am now." I sat on the side of the bed near the night stand. I would spend a lot of time there over the next 24 hours.
"It's worse than that," Gene answered.
"What? What's worse than him dying?"
"Do you remember that liver biopsy surgery he had four years ago when they didn't find anything wrong with him?"
"Uh huh, and?" I muttered.
"Well...Johnnie, Daddy's got AIDS. They gave him some bad blood that was tainted with HIV."
"Oh, my God!" The news was the worst I could have ever imagined. Not Daddy. Not that loving 81 year old retired man out there on the farm. How could this be? I was beyond stunned.
"One helluva a mess, I'm afraid," Gene said. "I hated to think about having to tell you this. Mama called me early this morning. She was at LaQuita's house. She and Daddy."
I could hear Gene take a deep breath. My face went numb.
"They turned him away from the hospital last night," he said in an angry voice. 'He broke a tooth while eating something at home and was bleeding all over the place."
I couldn't believe what I heard.
"Mama got scared as hell," he said, "and she called an ambulance to drive them all the way to Kiowa Falls to see his doctor. Of course, he wasn't on duty that time of the night, so they went to the emergency room. When the ER doctor looked at his charts, he told Mama they couldn't admit Daddy and basically told them to get out. Mama said she was so confused and didn't know what to do. Dammit, Brother, those bastards turned them out into the dark-of-the-night with Daddy bleeding like that."
Gene was terribly upset. He was almost crying, I could tell. So was I.
"Hang in there, Brother. Hang in there." I knew how difficult this was for him.
"Johnnie, they sat on a bench outside the hospital in the dark for quite a while, I guess, before Mama went back inside the hospital and called Daddy's dentist telling him that she had an emergency. That guy agreed to see him at about 10:00, I think. She wound up calling LaQuita, too, to see if she would come get them. She agreed and said she was on her way. Mama said the dentist was shocked when they came into his office. Mama had a bath towel wrapped around Daddy's neck. It was soaked with blood from his broken tooth. Apparently, Daddy was having a tough time understanding what was happening, and she was scared to death he was going to die."
We continued to talk.
In the spring of 1983, I mailed my parents a Panasonic cassette tape recorder and three blank tapes. I asked them to take time, just whenever they felt like it, to make a few recordings, talking about their background, childhood, young adulthood, their marriage, our family, and anything else that came to mind.
The truth was that Daddy was already 76 and I was starting to get a knot in my stomach realizing that he was mortal, after all. I had always thought he would live forever. A child's illusion.
I didn't expect a whole lot; maybe a few stories and a song or two. But, over the next three and a half years, they recorded hours of their memories, anecdotes, songs and family tidbits. Daddy, especially, loved to make the recordings. It was a good reason for him to sing his religious hymns, and the recording time became a big part of his weekly routine. I cherish the recordings and find them to be one of the greatest gifts I could have ever received.
Little did I know at the time, but those recordings would also document my father's recounting of the rapid decline of his physical and mental health and the conspiracy to cover up of the cause of his death.
Daddy called me at my office in California on March 21, 1985 from his room at NorTex Memorial Hospital in Kiowa Falls where he had been a patient for almost a week.
"Johnnie, I need to tell you that the doctors believe I may have a malignant tumor on my liver. But I don't feel sick at all."
"What doctors?" I asked.
"Well, Dr. Newman, he sent my report over here to Dr. Fletcher at NorTex Hospital. He's our good doctor. You know who I'm talking about. He wanted me to come over there for some more tests, I guess thinking I might have something serious. So, Mama and I drove over here on the 18th. Morris…Dr. Fletcher…had them do a CAT scan on my lungs, and it was just some fluid from the flu I had, like Dr. Newman said. But he did see something else on my liver that worried him. He said it was probably nothing, maybe a benign tumor, but thought I better have another scan for a closer look. So, he went ahead an admitted me to the hospital. I laid around here, bored as all get out… Mary Lee, too… until this morning. They did another one of those scans on my liver several hours ago. They're real uncomfortable to do and I didn't like the idea of getting all that radiation, you know."
"Did Dr. Fletcher tell you that he saw a malignant tumor this time?" I asked.
"No. Said it looked benign, but that you can't be sure until you do a biopsy. I'm scheduled to go in for that next Tuesday, on March 26th. He wants me to just stay here in the hospital. I tell you, I sure would like to go home. Can you come to Kiowa Falls and talk to the surgeons with me? I hate to ask you to take off work, but I would feel more comfortable if you were here. Mama would, too. I'm beginning to wonder if all this is necessary. I don't feel bad, now."
"I'll be there," not hesitating. I knew he was in a quandary. "You don't worry. We'll make sure everything is fully discussed with the doctors before they do anything. It just seems odd to me that they can't tell if a tumor is cancerous or not from the CAT scan, but I'm no medical expert. They're probably right about what needs to be done, Daddy. They're good doctors at NorTex."
He thanked me and told me that he loved me. We talked a bit longer, mostly about the stormy weather they were having in Texas… a normal part of every phone call we had.
I hustled around and got a plane reservation for the next day. LA, Dallas, Kiowa Falls. When I walked into his room at NorTex Hospital, Daddy was talking to the surgeon, Dr. Baker Lessing. He was a friendly man, and seemed interested in covering all the points about the surgery and making sure we were well informed.
"Will he need any blood during surgery?" I asked the doctor. After all, they were going to cut on his liver, and I thought there might be considerable blood loss. "If you do need to give him blood, I want to donate some today while I'm here. We're both O-Positive, plus there's no need to pay for blood if I can give him mine."
"No, he won't need any blood. Not at all," he said in a reassuring tone. "We'll make a small incision. Take a tissue sample from the growth and send it to the lab for testing. It's a routine procedure that won't last too long."
The doctor left the room. Daddy and I sat there, just looking at each other.
He still had his gown on when he got down off the examination table. The next thing I knew he was on the floor doing pushups. "There's nothing wrong with me. I feel as good as ever," he grunted, with the rhythm of each push up.
I had to be in Chicago early the following week for an advertising planning meeting with International Harvester Company, which meant I would not be able to be in Kiowa Falls for Daddy's surgery. Gene agreed to come down from Minneapolis to be with him and Mama during the operation and for a few days of his recovery. That was a big relief for me, and for Mama and Daddy.
Gene called me around 3:00 in the afternoon on March 26th.
"Well, he's in recovery. It took a lot longer than we thought. He was in there for a couple of hours. They removed a benign tumor. No cancer, they're pretty sure. But they'll know tomorrow after the lab tests are back. I don't think he needed to be cut on, Johnnie. That whole line of bullshit about a cancerous tumor was just that. And to keep him in the hospital for two weeks, and all those tests. Total bullshit."
"You may be right," I said with a relieved voice. "But at least it's over, and maybe he'll be home soon."
It would take two more weeks until Daddy was released from NorTex Hospital. The surgery was more extensive than any of us had been led to believe. But we felt fortunate that the tumor was benign. Tests were conclusive.
It was in the summer of 1986 when the character of the phone conversations began to change. Mama would usually answer the phone. She spoke more quietly than in the past, and not long into the conversation would start talking about Daddy not doing well for some reason. She said he was getting pretty forgetful. Not about everything, but that he had a hard time remembering things they had just talked about a few hours, or even a few minutes, earlier.
"Is he getting Alzheimer's?" I asked her one day.
"I don't think so," she said. "I've read about that, and he's not having the same symptoms. I don't know what it is. He hasn't been the same old Doc since that operation on his liver. That set him back a lot. His forgetfulness started not long after that. I wonder if they gave him too much anesthesia, or kept him knocked out for too long. Something sure has changed him."
It wasn't long before they had to give up running the service station. Daddy was disappointed, but knew he couldn't continue. He had problems making correct change, and other basic tasks. He was embarrassed by his lack of control. He was a proud man in that regard.
I received a call from Daddy in the fall of 1986. He sounded awful. He seemed confused and rambled on about his knees getting weak.
"I went for a walk in the cotton field this morning, Johnnie, and my dog gone knees just wouldn't work right. They felt weak. I almost didn't make it back to the house. I got sorta scared, you know. Thinking, what if I collapsed out there somewhere and Mama couldn't find me. I know she would have, though. Probably would have gone to get Donnie and they woulda found me." I had never heard him like that.
"Daddy, do you think you might have had a light stroke?" I asked him.
"I don't think so. I'm not numb anywhere, and I can see and talk okay. My eyes are getting a little bad with macular degeneration, but other than that, I'm in pretty good shape for an old codger, I guess," he said.
"What does the doctor say might be wrong with you?" I asked him.
"I think the doctors are part of the problem I'm having," he said. He bemoaned the fact that the surgery on his liver was unnecessary and that the doctors did something to him that made him start having the problems he was experiencing.
"They say I'm just getting old. I think they messed up somehow, and I'm suffering because of it," he said.
He had made that comment several times since the 1985 surgery at NorTex Hospital in Kiowa Falls. He even mentioned it on one of the cassette tape recordings he made. He dwelled on it a lot and was convinced that the doctors made a terrible mistake of some kind when they operated on his liver.
For the rest of the fall and winter of 1986 and early 1987, Daddy's health deteriorated pretty rapidly. Mama's phone calls got more desperate.
Gene and I made trips to see them in January. We feared that Daddy was on his last leg. When we saw him, however, he didn't look as bad as we believed he might. He had lost some weight, but not an alarming amount. He looked worried, mostly. His brow had furrowed a lot and he looked extremely stressed. But he put on his best face and told us not to worry about him and Mama, that everything would be okay.
"After all, I'm not a young man, anymore. Things just don't work as well at 80 as they did when you boys were young."
He had a sad, distant look on his face when he told us that. Mama tried to avoid the conversations we had with him. We could tell it hurt her. She didn't know how to help her husband and best friend of 50 years. It was tougher now to leave them out there on that "little knob", as Mama always called it. It was a desolate place, particularly in the winter.
I cried as I drove away in my rental car, seeing them stand in the gravel driveway waving goodbye, just like they did over 31 years earlier in 1965 when I pulled away, heading off to college. This time it was gut wrenching for me, not knowing what might happen next in their little world.
"Well...Johnnie, Daddy's got AIDS. They gave him some bad blood that was tainted with HIV."
It was all I could do to hold the phone to my ear. Gene was now sobbing, but quickly composed himself. My emotions were all over the board.
"Mama said the dentist got him to the chair and cleaned him up a bit before checking his tooth. He found it was broken in two and part of it had come out. When Mama told him about the hospital turning them away, he was stunned, she said, and couldn't believe they would do that."
"What did he do? Did he help Daddy, at all?" I asked still feeling addled from the unbelievable news I was hearing.
"Yes. He pulled the broken tooth and gave him a pain shot and some pills. By that time, about midnight, LaQuita had made it to Kiowa Falls and was there to take them over to the farm. They got there around 1:30 in the morning. Can you believe this?"
"Does the dentist have any clue that Daddy has AIDS? If he doesn't, somebody needs to tell him, and soon," I said.
"Yeah, he knows, alright," Gene went on. "As soon as they left for the farm, he picked up the phone and called the emergency room doctor, and found out about the AIDS. Apparently, the ER doctor was beside himself, too. He had only found out Daddy's condition by reading his medical records, which now contained the details of his AIDS."
"What did the dentist do?"
"Mama said he drove all the way to Knox City and confronted them at the house sometime after 3 o'clock. She and LaQuita had put Daddy to bed and were at the kitchen table talking when he drove up. Scared the heck out of them that time of the night, as you can imagine. She said the dentist went sort of crazy yelling at them, asking why Mama didn't tell him that Daddy had AIDS. Said he was scared out of his mind. Johnnie, Mama was finally told two weeks ago that Daddy was HIV positive, but was so scared that she hadn't told anyone."
"God almighty, Gene. I can't believe this. But it's all starting to add up," I said, still in a daze.
"Aside from her shock, as you can imagine, the dentist was railing about being infected with HIV and was running around washing his hands, terribly upset that he had touched all that blood. She said once he sort of calmed down, he asked if he could help them, somehow. But that he wouldn't go near Daddy again."
Gene was out of breath after telling me all this.
"Everybody's in shock, I tell you," he said. "I just talked to LaQuita. They haven't had a bit of sleep. She doesn't know what to do. I don't either. We have to do something to get him some help. Mama refuses to even try to take him to the Knox City hospital. I was thinking about Lubbock. What do you think?"
All I could say was, "Damn. I'm stunned. We knew something was not right, but this is unbelievable.
"Johnnie, Daddy's real bad and it sounds like Mama can't take care of him, anymore. We have to help her find a place to take him. Got any ideas?"
"Let me think about it for a few minutes. It's all so overwhelming right now," I said. "I'll call you back. You be thinking of suggestions, too. I'll call Mama, right now."
Mama answered the phone after the first ring.
"Mama, Gene just told me what happened. Are you okay? How's Daddy?" I blurted out. She was not as frantic as I thought she would be.
"Johnnie, I just couldn't bring myself to tell you boys. I've been trying to keep it quiet. I didn't want people to know. You know how awful people in these small towns can be. We wouldn't have even been able to drive to town or shop for groceries, if people had known that Doc has AIDS. It's just been a terrible nightmare. Daddy doesn't know what's wrong with him. I haven't told him, either. He's getting real bad dementia… losing his mind."
She couldn't contain herself any longer and burst out sobbing.
"Oh, Johnnie, it's the most awful thing, ever. You just can't imagine what we've been going through. And now his doctor won't even see him or try to help at all. Nobody at the hospital or his clinic will see him. They've all been told to avoid contact with him. What are we going to do? Poor Daddy. He never deserved to get like this. It wasn't his fault."
She was crying uncontrollably.
I decided pretty quickly that Lubbock would be the best place to try to find a facility that would take Daddy. The chances of finding someone elsewhere to admit him were pretty slim. Plus, Mama would oppose it, no matter what. It was easier to get to Lubbock from California and Minnesota. I knew that Gene and I would be going there, soon.
I managed to get a listing of all the critical care nursing facilities from the Yellow Pages long distance directory and started calling. I didn't know what the cost for care might be, or who was going to pay for it. It didn't matter at that point. We would worry about that when we found a place that would agree to take him.
My first three calls were non-starters. I spoke to the administrator or director of all three facilities, but when I mentioned AIDS they all refused to discuss the matter any further.
The next nursing home I reached was associated with a big hospital in Lubbock.
"Mr. Montandon," the director said. "We would like to help your family. I know it must be terrible for all of you right now. But I simply can't put our patients and our staff at risk. AIDS is such a virulent disease that I would be jeopardizing everyone in this facility. I'm so sorry."
I pleaded with her. "You're my last choice, Ma'am. There aren't any other places in Lubbock that can take care of him. Please! We need your help."
"I just can't, sir. You must understand. I just can't." She hung up.
I saw the writing on the wall. No one was going to take a person with AIDS into their facility. Not in that part of the world, in 1989.
As I pondered whom to call, I remembered that a few years earlier Tech had opened its medical school. Maybe, just maybe, that was the angle I needed. I immediately called long distance information and got the number for The Texas Tech School of Medicine. It took only one call to the switchboard, and they transferred me to the Dean's office. A lady answered the phone. I do not recall her name, but she was a Godsend.
"My name is John Montandon. I'm calling you from New York City. My family and I have a serious medical emergency in Texas that we can't get any help for. I'm calling you out of desperation, and I thought since I am a Tech graduate and donate to the school, that you might be able to give me some advice."
The lady listened attentively, as I filled her in.
"Mr. Montandon, this is a very sad and awful situation your father is in. And your poor mother. It must be hard on all of you."
Then with a firm and confident voice, she said, "You should call St. Mary of the Plains Hospital in Lubbock and ask for Dr. Jose Garces. He is one of the leading doctors in Texas who has experience treating AIDS patients. He is a pioneer with the disease. I'll call out there and let him know I've spoken to you and then you should be able to get right through to him."
She gave me the hospital number. I thanked her profusely for her understanding and support. She was the most considerate person I could have possibly encountered that day. I never had a chance to meet her, to my disappointment.
"I would like to be connected to Dr. Garces," I told the woman who answered my call to the hospital.
"And what is your name, sir?" she asked.
"John Montandon. He should be expecting my call."
"Oh, yes, Mr. Montandon. Just a moment, please."
It had been less than 15 minutes since I had spoken with the lady in the Dean's office.
"Mr. Montandon? This is Dr. Garces. How are you?" he asked in a pleasant and reassuring voice.
"Well, I'm desperate Dr. Garces. That's all I can say right now. Desperate. I think you may be my last hope for helping my dad."
"The Dean's office told me the situation with your dad. Where is your father right now?" he asked.
"He's at home on the farm north of Knox City. He's in such bad shape. My mother is there with him. She's pretty messed up, too," I said.
"We can send our helicopter out to get him, if necessary, and get him over here right away," he said, now in a more urgent tone. "I can switch you to those folks, and they can get all the particulars from you. Location, phone numbers, and such."
"Doctor, I'm afraid my mother couldn't handle a helicopter ride and my dad at the same time. She's never flown before. If I could be there with them, I might be able to make that happen, but she would have a tough time, otherwise. Let me call my mother and tell her the good news, first; that you will treat my dad. That's the best news any of us could hear. You just can't imagine how much this means to me, my brother and our parents. I can't thank you enough, sir. One way or another, we'll get him to Lubbock as quickly as possible."
"If you can't arrange for that, John," he said, "Call me back. We'll send an ambulance out there, if the helicopter ride is too much for them. In any case, it sounds as though time is of the essence."
I assured him that I would get back to him in a few minutes.
My ears were ringing, my heart pounding and I was breathing fast. I had finally gotten a positive answer. And what an answer it was. It was not just a nursing home. It was one of the best hospitals in West Texas. And a doctor who knew how to treat AIDS, as well as anyone could at that time.
I made my way to the west side of Lubbock, and found the hospital where they had taken Daddy the day before. The residence where Mama was staying was only a few blocks from the hospital. I stopped there first. When I saw her, I was shocked. She was thin and gaunt. The last year had taken an immense toll on her.
She was reluctant to hug me. I knew she was afraid she might be infected with HIV and didn't want to give it to me.
"Don't worry, Mama," I reassured her. "AIDS isn't transmitted by hugging. You have to exchange fluids or get blood with AIDS in your system."
I held her close until she took a deep breath. She didn't cry, but clearly she was emotionally drained.
"They put him in a real nice room Johnnie. He looks peaceful. They got him all cleaned up and everything. He's resting pretty well, I think. The doctors and nurses over there are just the most wonderful people you've ever seen. They told me that they would do all they can for Daddy. They started him on some medication for AIDS. AZT, I think it's called. But, Johnnie, it's too late. Your Daddy is about gone. She wiped her tears, "I'm so sorry I didn't tell you and Gene what he had. I didn't want to worry you with it."
"That's alright, Mama," I said gently. "I understand. We're not mad. Just really sad. For both of you."
"Gene will be here in two days," she said. "I told him not to come in right now, that you would help get things straightened out, and then he can come for a while after you leave."
After we sat and talked a while, I told her that we should go over to the hospital. I wanted to see Daddy and talk to Dr. Garces and get all the paperwork handled. She agreed, but pleaded that I not insist that she get tested. Just not yet. I agreed, reluctantly.
Dr. Garces was in Daddy's room when we got there. Mama couldn't go in the room. It made her uneasy to see Daddy lying there, and not knowing if she would realize the same fate.
"Hi, Daddy," I said making my way to his bedside. "How's ol' Doc Montandon doing, today?"
He smiled looking remarkably well. He was clean shaven, his hair combed, and he was sitting up with a meal tray pulled near him. He had been eating soup and a grilled cheese sandwich.
"You must be Johnnie," Dr. Garces said extending his hand.
"Yes, sir. I am. I am so happy to meet you. You can't imagine what your help means to us," I said, gripping his hand so firmly that it made him grimace.
"Your dad is comfortable. We've been talking about farming in Knox County."
Daddy smiled slightly, and then turned his head toward the door as if he was looking for Mama.
"Do you mind stepping out into the hall for a moment? I'd like to chat in private," Doctor Garces said, quietly.
"Be right back, Daddy. Just going to talk to the doctor for a second," I said.
Daddy didn't respond. He was staring out the window with a blank look on his face, as if he was a million miles from home.
From legal documents...
On April 23, 1989, Eugene N. Montandon was admitted to St. Mary of the Plains Hospital in Lubbock, Texas, under the care of
Dr. Jose Garces. Dr. Garces confirmed that Eugene N. Montandon was suffering from AIDS secondary to HIV positive blood transfusion.
Mr. Montandon also suffered AIDS Dementia Complex and AIDS Wasting Syndrome.
"You're dad doesn't know he has AIDS. Your mom didn't tell him, and there is no reason for him to know. He has severe dementia and likely wouldn't understand what we were telling him. Anyway, there is no value in possibly getting him upset. I've prescribed some pretty heavy medication for him. AZT is the only current drug for HIV. With his condition so far advanced, it will probably have little effect on him, but we need to try what we can. I've also ordered other medications that should keep him pretty comfortable."
"How long does he have to live, Doctor?" It was a question that was like pulling my stomach out through my mouth.
"He's in the advanced stages of AIDS. It's hard to say. Maybe three or four weeks. At his age, he might not last that long, but he's a strong man. He could last longer."
"Will he suffer much?" I asked. I hated to hear the answer.
"He'll lose more of his mind, and then slip into a coma. His breathing will start to labor. That's the roughest period. He'll probably develop pneumonia, which may take his life. We'll monitor his condition closely. When he can't feed himself any longer, or isn't interested in eating, we'll move him to our hospice wing. The nurses there are incredible and have skills to handle his condition very well. Your dad will be in good hands, I assure you."
"Thank you for being so honest, Doctor," I said. I took a deep breath and exhaled just as deeply. "I'll cover all of this with my mother."
Back in his room I kissed Daddy on the forehead and rubbed his arms and hands. He liked that. "Are you going to be okay, Daddy?" I asked.
"With God's help, I'll be fine," he answered with a smile. He seemed almost content. His strong faith had always gotten him through the roughest periods.
I told him that I was going to see Mama and would be back in a short while.
"Where is Mama? I miss her. Is she here?" He asked as he frowned.
"Yes, she's staying next door in a real nice place the hospital lined up for her."
"Where's my check book and car keys?" he asked.
I had seen them earlier in his night stand drawer when I looked for some Kleenex.
"They're right here. You can reach them, if you want," I said, pointing to the drawer. "You'll be out of here pretty soon, so we'll be sure to get all your things before you leave. Don't worry, Daddy." He seemed okay with that.
As I turned to look at him one more time before I left his room, I couldn't help but think how ironic it was that the only place we could get to take care of him was a Catholic hospital. Catholicism was the antithesis of Daddy's religious beliefs. He worried that Gene or I might someday marry a Catholic girl, so he never allowed us to date them when we were teenagers. But that day at St. Mary's, there was nothing better in the entire world to me than a Catholic.
Mama was sitting in a recliner in the hospital family residence when I got back to the room.
"Did he know you?" she asked.
"Sure. We've been talking up a storm. He is worried about his check book and car keys, and he misses you. He wants you to come see him, Mama."
"I just can't bring myself to go there. It's so depressing to see him that way. I don't know what to do," she lamented.
It made me sad that she wouldn't go see Daddy, but deep down I thought she would be worse off going to see him than if she stayed away. Daddy was slipping fast. It wouldn't be long until he would be in a coma.
"I won't push you, Mama. You'll decide when it's the right time to see him."
I've often thought it was either the deepest of true love that kept her away from his room, or it was the guilt of not telling Gene or me earlier that he was infected with HIV and that he might have gotten some medical help. She was lost, and no good shepherd was to be found. She truly felt alone.
Dr. Garces made arrangements for us to meet with the Director of Patient Services that afternoon. Mama and I went back to the hospital, and we met the Director near Daddy's room. Mama was like a frightened cat the whole time, telling me that she couldn't go into Daddy's room. I assured her that we would not. We spent about 30 minutes with the Director. She made it easy by giving us the options we needed. We agreed that there would be no artificial, pointless, life saving interventions. It was easy to agree to those things. We did not want to prolong his suffering. She also outlined the Medicare options. Checking his supplemental insurance she assured us all the costs of his care and treatment would be covered, including the time he would spend in hospice before he passed away.
When we finished talking with the Director, I told Mama I wanted to go see Daddy again before we headed back to our rooms. She went to the waiting room. Daddy was awake and smiled when I came in.
"I love you, Johnnie," he said in a shaky voice.
"I love you, too, Daddy. Can I get you anything?"
"Where's Mama?" he asked, glancing toward the door.
"She's resting, Daddy. She's really worried about you, and it makes her tired." I could think of little else to tell him.
"She's a good woman, your Mother. I sure do miss her."
I had to leave before I started crying.
"I'm going to take her out for a bite to eat. Maybe to Furr's for some meatloaf and fried okra. She'd like that, don't you think?"
"I would, too," he replied with a soft smile.
On the morning of May 3, 1989, I got a call from Dr. Garces.
"Johnnie, I need to get your Mom's approval to move Mr. Montandon to our hospice wing. I've done all I can do for your dad and its time we put him in the care of the hospice nurses. I'll continue to see him on a regular basis, mainly to keep him comfortable with proper medication."
"Sure. I understand, Doctor," I said, with an all-too-familiar lump in my throat. "I'm sure Mama will be fine with that. We've discussed it a lot. We knew this day would be coming soon." I called Mama when I hung up from the call with Dr. Garces.
"Did he say how much longer he has?" she asked.
"They can't tell us that, but it won't be long. Maybe a few weeks. It's impossible to know." Several answers crossed my mind before I responded. It was pointless, and probably more painful to suggest that he might live longer.
Daddy was transferred to the hospice wing before noon that same day. The staff members were extremely thoughtful and reassuring, especially the nurses.
"We'll take good care of your dad," the head nurse explained to me before I went into see Daddy in his new room. "He will be as comfortable as we can make him, but he'll have some rough periods. He'll go in and out of consciousness, but he should still recognize you and your family, at least for a while, although you may not know it at times. The effects of dementia are tough to predict. As his disease progresses, he will lapse into a coma. That's when we will know the end of his life is nearing."
"Thank you for being candid with me," I told her. "It's best that we know what to expect."
The head of the bed was raised, and Daddy was sitting up, slowly eating a turkey sandwich. He looked better now than over the past few days.
"You'll get fat eating so much, you know." I said, jokingly walking over to his bedside.
I cleaned up his hospital gown and put the half-eaten sandwich on his tray. After giving him a drink of cold milk from a straw, he let out a big sigh and said he was tired. I rubbed his arm and patted him on the head before I lowered the bed for him.
"Take a good nap and I'll be back to see you in a while. Okay?"
He was already asleep.
Each day that she and I stayed in the guest house across the street from St. Mary's hospital the reality became more apparent. Daddy was deteriorating rapidly. His dementia was extremely serious, although he still knew when I was in the room. He was fading in and out of consciousness and could no longer speak. His eyes were closed most of the time, and when they were open they were fixed and glazed. An occasional blink, but that was about it. His breathing had become labored and his mouth stayed open as he gasped for air. His big chest rising and collapsing with loud gasps could be heard down the hallway.
With a pitiful scowl on his face, he began to raise his arms and reach out into the air as if he was trying to grab something. Groans came from deep inside him. His mind still had activity, but it seemed as though it was a terribly tormenting time for him. I wished he would take his last breath and go peacefully, but it didn't stop for days. I became mentally and physically worn out watching this extraordinary man, my father, struggle between life and death. The strain of giving Mama a report each time I returned to the apartment, plus the recurring haunt that she might also have AIDS was taking an immense toll on all of us.
Finally, Daddy slipped into a coma. It was a relief to see him at ease. His breathing was shallower and louder, but he wasn't struggling with his arms. His furrowed brow had relaxed.
It was May 22nd, a Saturday, about 10:00 in the morning when the head hospice nurse came into the room. She was a kind and soft spoken woman. Everybody we met in the hospital was caring.
"Johnnie, it's time for you to tell your dad that it's okay for him to go on."
My emotions were mixed when I heard those words. The end for Daddy was near. Hospice nurses know when death is eminent. The relaxed ankles, the labored breathing and other physical signs of a soul about to depart this life.
"He can still hear you," she said. "You should tell him that you are okay with him going. It will be good news to him. He's worried that you and your mom and brother will be sad. He's hanging on because he loves you all so much." Then she quickly left the room.
I stood in front of Daddy's bed with an urge to flee the room. I knew that wasn't possible. Now was the moment to communicate with him for the last time.
I walked slowly to the side of the bed and stood there by Daddy. I grasped his hand in mine and put two of my fingers in his palm where he could hold them. I rubbed his forehead gently, then his hand that held my fingers. My throat was so tight I couldn't swallow. I looked up and gazed around the room. It seemed empty. Just Daddy and me. Sunlight was coming through the window and shining on his arm and across the white blanket spread over him.
After a minute or so, I said, "I love you, Daddy. More than you will ever know." To my surprise I felt a light squeeze on my fingers.
"Can you hear me, Daddy?" Another light squeeze. I laughed out loud. Another squeeze, this time slightly more firm. I was elated. I knew we were still connected.
"Daddy, it's alright with Mama, Gene and me if you go on. We know it's time, so don't worry about us. Okay?" Another squeeze on the fingers. "We all love you so much Daddy. I know you love us, too."
I rubbed his hand a while longer, touched his face gently, then left the room. I made my way back to the guest house where Mama was.
After taking Mama back to her room, I made another visit to see Daddy. He was lying still and looked a bit more relaxed, although his breathing was extremely deep and loud. His mouth was open wider, now, as he worked harder to get air. The sound was haunting. He had always had a deep, steady breathing pattern. Standing by his bed, I thought about all those warm summer Sunday afternoons when I was a little boy and he lay on the floor with his shirt off taking a nap, and the newspaper spread over his face to block the light. It was the only day he didn't work. I think he thought God would deem it okay to rest a bit on Sunday. I would lay down beside him with my head on his stomach and listen to him breathe. I remember how his chest felt, how he sounded, how he smelled. Clean like Ivory soap with a touch of Old Spice. It was a comfortable and safe time. His big rough hand would be on my shoulder, and the world was good.
"How are you doing, Doctor Montandon?" I said as I slipped my fingers into his sweaty, hot hand. It was more clinched, now. His nails were a bit long, his skin was soft. A departure from years of work calluses and wind burns. I waited for a light squeeze, but there was no response.
"I saw an old friend today, and he invited me to church tomorrow. The Church of Christ where I used to go. Remember? I used to tell you and Mama about it when I went to that big church with thousands of people attending. I told folks there about our little congregation with 80 or 90 people."
I felt the slightest of movement in his hand. Or I thought I did. Maybe I wanted him to respond so badly that I imagined it. I felt he heard me. It made me think that I might have made him a little more comfortable. It's funny how your mind works under stress.
Again, I rubbed his hand, his arm and his forehead. I kissed him on the cheek, and left the room. I was met outside the door by Dr. Garces and a hospice nurse.
"Your dad is resting pretty well, Johnnie. I know his breathing may seem as if he's in pain, but he's not. We have him pretty sedated. He is in the last stages of dying, so it could be any time now. How is your mother? And Gene? I know this is a very difficult time for you all."
"Thank you, Doctor, and all the nurses here. I can't begin to tell you how much your care has meant to us. When we were desperate for help you stepped in at the right time." They smiled and went inside Daddy's room. I left and went back to be with Mama.
Mama was up before me on Sunday morning and had fixed a generous plate of eggs and bacon along with buttered toast and hot coffee. She was sitting in the easy chair reading the paper.
"There's an article in here about the medical school at Tech. You ought to read it." She had makeup on and looked more rested and sure of herself. Mama had a way of rallying back when she got down. This was a real test, but she had managed to pull herself together.
"I'm going to church. Do you want to go with me? My old friend, Royce Wittie and his wife, Diane, will be there. We could all go to Furr's after service."
"No. I don't think so. I don't have any clothes I would feel comfortable in," she said. "You go ahead. Tell them hello for me."
I hadn't been to church in a long time. I felt strange putting on my suit and tie and knowing that shortly I would be sitting in a pew. Even though Daddy had taught Gene and me to be believers, we never came close to the intensity he had for Scripture and the ceremony. And Mama, God bless her, she still felt the sharp pains of the preacher at her dad's funeral telling her family that Henry was going to hell for shooting himself. Going to church was not part of her being.
I ate my breakfast, read a bit of the paper, and then got ready for church.
I drove over to the hospice to see Daddy for a few minutes before I went to church. The day was sunny, and the wind was calm. It felt good and familiar. It felt like Sunday. I was actually happy to be going to church. It would have pleased Daddy, and that thought pleased me.
The nurses had turned Daddy onto his side to prevent bed sores on his back. He looked more natural and more comfortable. He had fresh bedding and his thin hair was clean and combed. They had given him a good shave. I patted him on the shoulder and stood there by him for a while. When a nurse came in, I spoke to her for a moment and told her that I would be back for a longer visit after church.
I turned right off University Avenue onto Broadway. I always liked to drive down Broadway on the red brick pavers. I could only imagine how many guys it took to lay all those bricks.
I pulled into the parking lot on the west side of the church and walked to the front of the building. Royce and Diane were waiting for me at the entrance. Throngs of well dressed worshipers filed into the building through several sets of huge double doors. Everyone looked happy. Greeters met us at the entry to the auditorium.
I hadn't been inside Broadway Church of Christ in 20 years, yet it felt the same. It's a beautiful house of worship with superb acoustics, especially for a cappella gospel singing. The kind Daddy loved. We chose a pew about 30 rows from the front. It wasn't long before everyone was seated. The assistant pastor came out to welcome everyone, and to praise God for us all being together. It all felt familiar and comfortable. I realized at that moment how much of an impact church had made on me. It was an important part of my upbringing.
After 15 minutes of singing and about an hour of meaningful sermon, there was the traditional invitation to come forward and confess your sins or to state before the congregation your belief in Jesus as the Son of God and to request to be baptized. That morning, a number of people went forward, and we all prayed for them.
I recalled the Sunday morning in our little church in Knox City when I got baptized. It was a major event for me. It made Daddy proud. I could see his beaming smile as I made my way back to the pew to sit with him, Mama and Gene, my hair still wet from being "immersed."
My mind came back to the reality of Daddy on his death bed. My heart sank lower than it had to that point. Royce had a sad look on his face peering over at me. I thought about Mama, too. I couldn't do anything to ease her anxiety and suffering. And there she was, sitting a few hundred feet from her dying husband and couldn't muster the will to go see him. I wanted, so much, for her to hold his hand one last time and kiss his cheek. Surely, he would know she was there. He loved her, immensely. She loved him the same. But she must have felt she couldn't bear the greater pain of seeing him as he was. Tough as she was, this time she had been whipped.
There were two more hymns to be sung before the final prayer. The first one was "On Jordan's Stormy Banks I Stand," one of Daddy's favorites and one he sang a lot. It was beautifully sung that morning. The congregation was so large that the music engulfed the auditorium. I thought of Daddy standing by me singing his heart out and looking at me with a smile while I sang it, too. He was there with me. I could feel him.
On Jordan's stormy banks I stand, And cast a wishful eye
To Canaan's fair and happy land Where my possessions lie.
O'er all those wide, extended plains Shines one eternal day;
There God the Sun forever reigns, And scatters night away.
When shall I reach that happy place, And be forever blest?
When shall I see my Father's face, And in His bosom rest?
Filled with delight, my raptured soul Would here no longer stay;
Though Jordan's waves around me roll, Fearless I'd launch away.
We will rest in the fair and happy land, Just across on the evergreen shore,
Sing the song of Moses and the Lamb by and by, And dwell with Jesus evermore.
Another song and the closing prayer followed. The service was over. I had mixed emotions of happiness and utter sadness. I stood there for a while looking up at the ceiling thinking about the past several months and what was on the horizon… and about getting back to Mama and Daddy. They needed me to be with them.
As we filed out of the church building, we shook hands with the preacher. Royce had told him about Daddy. The preacher said he had prayed for him, and hoped we were all okay. I thanked him and Royce, and told them that it meant a lot to me. I told Royce and Diane that I had to beg off on lunch and that I needed to be with Mama. They expected nothing less and wished the best for Daddy and our family. I promised I would be back to visit with them at a happier time.
I parked my car at the guest house and then walked to the hospice to be with Daddy before seeing if Mama wanted to go to Furr's. She loved the food there.
As I approached Daddy's room, I saw two nurses standing outside. The door was closed. As I walked toward them, they looked at me with slightly tilted heads and smiled. I knew what that meant.
"Is he gone? I asked.
"He passed away peacefully at 11:15, while you were at church," one nurse said as she hugged me. "We're so sorry," said the other nurse. "We loved your dad, too."
They had been with him when he was first admitted to the hospice and was still able to communicate. They had comforted him through his entire journey. I am still in awe of the difficult and remarkable work done by hospice nurses and staff. They are God's children, in my book. And at St. Mary of the Plains, they were truly remarkable.
Entering Daddy's room alone, I was struck by the silence. No loud, labored breathing. I walked beyond the curtain pulled around one side of his bed. He lay there motionless, still on his side. I touched his shoulder. It was still warm, but not the warmth I had last felt. He looked so peaceful. No sign of distress on his face. His mouth was no longer gaping open. Through all of his dying process he never became gaunt. His skin was only slightly blotted with a few traces of Karposi's Sarcoma that is typical with AIDS. Lying motionless and quiet he still looked as strong to me as when, as a little boy, I'd run and jump into his arms.
I felt the relief I knew he had achieved. I took a big heaving breath and started crying. I stayed with him for about half an hour just standing by him rubbing his arm and shoulder. I stroked his cheek. I stopped crying. I felt as though a giant weight had been lifted from Daddy and Mama.
It was hard to leave the room, but I had to go tell Mama. Before I left the hospice I confirmed the prearranged procedures, timing and other details, so we knew what to expect in terms of moving Daddy to Knox City for a burial service. The arrangements were already made by the hospital so we had nothing to worry about. It was typical of the way they ran things.
My emotions ran the gamut walking back to the guest house. Strangely, I was excited to tell Mama. She knew the minute I walked in.
"He died, didn't he? That's where you've been so long, isn't it?"
"He died while I was at church. 11:15 this morning."
"We better call Gene," she said. She didn't shed a tear.
She dialed the phone. "Gene. You better come on home. Daddy died just a little while ago. Johnnie was just over there. He said he looked real peaceful. I'm glad it's finally over. The poor man suffered so much." Then, she started crying, big tears ran down her cheeks. She looked at me while talking to Gene.
I hoped she would say she wanted to see Daddy, but she didn't.
"We'll need to get on to the house so we can take care of things," she said wiping her nose. "Here, talk to your brother."
"Hey, Brother. We'll, it's all over… Yes, I'm glad, too. It's been some ordeal, hasn't it?... When can you get here? Tomorrow around noon?... Okay. We'll see you here at the guest house. You're getting a car, right?... Okay. Be careful getting here. We'll see you in the morning."
Mama was already gathering up her belongings preparing to leave even though we had almost a full day before we were to leave for Knox City. It was her typical behavior. She was famously impatient. "Short," as she would say. When Mama made a decision, she acted. No dilly-dallying. She acted whether anyone else was ready or not. I helped fold a few of her things and suggested she leave out something to wear for the next day and to leave her makeup and toiletries out.
"I'm hungry. Let's go to Furr's," she blurted out. She was struggling to find a way to release her pent up stress.
We drove to the cafeteria and talked a lot about Daddy on the way there. Just little things. He would have liked to have some okra. He loved red beans. He had fun making breakfast. He enjoyed walking the cotton fields. That sort of thing. No sad talk, which felt odd. She ate a full lunch and had apple pie for desert. It was good to see her act somewhat normal.
I called Royce and told him what had transpired. He was a good buddy and comforted me over the phone.
I sat on the couch reading the paper but kept thinking about the irony of Daddy going over to the other side as I sang along to one of his favorite hymns in church. It was almost as if he had written the script. Had he hung on long enough to be at that moment before letting go? It sure seemed so. Or was I conjuring all this up to make it seem that way? Maybe it was a bit of both. Who knows? But to this day, I still feel as though he was singing along with the congregation that morning and with me…. "and dwell with Jesus ever more."
Many years later, I have found ways to share my story with others so that they, too, might gain some understanding when tragedy comes into their lives. I was asked by The NAMES Project Foundation to be an honored guest at a book signing and reading for By His Own Blood in Washington, DC, on July 24thas a part of the 25th International AIDS Conference. The NAMES Project Foundation is the non-profit organization founded in 1987 to be the custodian of the 48,000 6'x3' AIDS Memorial Quilt panels and associated document and media archives. As for perspective, the same issues still exist today as a worldwide pandemic to foster healing, heighten awareness, and inspire action in the struggle against HIV/AIDS everywhere. In Africa. In Europe. In Asia. And still in Texas. I also submitted and dedicated my father's AIDS Quilt panel in his honor while I was there.
I've often wondered why I took by father's death so incredibly hard. What I believe caused me to grieve so much over the loss of my dad was the way he died and especially that he was never told what caused his illness.
My father should have never been transfused with the HIV tainted blood that killed him. But he was. It has been a mystery to me. How could so many trained medical professionals have deliberately kept that fact a secret for so long? And why someone, anyone, who knew the facts, could not have brought themselves to do what was right. After all, this was about human life. A life they had pledged to protect.
Regardless the reasons, regardless the concealment, regardless the torture perpetrated on Doc and Mama, no amount of fretting or second guessing can bring him back. Yet nothing can totally relieve the pain I experienced watching him die. Seeing Mama suffer another dreadful event in her life was heartbreaking. This was a real tragedy.
I'm now mostly at peace with myself over the ordeal, but I don't think that I'll ever be 100% at ease about it. I'm still bitter about the whole mess, but not nearly as angry as I was the first few years after Daddy died. I was angry with gays because the donor of the HIV tainted blood was a gay man. I was angry with the doctors, the blood bank, the hospital, and even the defense attorneys.
I've obsessed over the ordeal far too long. But, I believe that, over those years, I have also grown as a person. Once I started seeing the bigger picture, and with time salving the emotional pain, I began to understand my own weaknesses and my own biases. I have learned to accept the fact that bad things happen to good people. I've learned that my pain is not uncommon; that other people have suffered immensely from the tragic loss of a loved one. But, more than anything, I have learned how deeply I loved my father. It was a love that was forged in enormous respect, and in the powerful examples he set by which I was to live my own life. I have not always lived up to his examples, and I have done things in my life that would have disappointed him. But, in the larger scheme of things, I have always accepted his principles as the guiding force in my life. I strive each day to be like him. Daddy had an extraordinarily high level of integrity and was fair in his dealings with others. He was honest and trustworthy. Above all, he was compassionate.
Daddy's death and his blood being shed, both literally and figuratively, allowed the ability for me to come to terms with prejudicial issues that troubled me in my own life experience. I think his sacrifice helped me gain a more enlightened attitude toward the state of mankind in the real world. It taught me to look at others with respect to their individual merit without unfair presumptions. And I realize that Daddy had put the essence of his character in me by his example.
How could he have known that someday the way he lived his life would have provided such an important insight to his son? He just did. It was in his blood. It is in my blood.
Not that I am a regular church-goer, as Daddy would have hoped I would be, nor am I as well versed in the Bible as he was, but I am aware of something that puts the moral of this story on a higher level. The Bible states that when it came to sacrifice, Jesus offered the world eternal redemption by his own blood. And in a similar way, the true meaning of forgiveness and redemption has been revealed to me through my father's sacrifice - by his own blood.
Author John Montandon's book, By His Own Blood, is available for purchase in both printed and eBook formats at CreateSpace.com, Amazon.com, Books.Google.com, and soon as an iBook for iPad tablets at Store.Apple.com/iPad. Click here.