This is Julia Hugo Rachel. Like millions around the world I was accused of having a mental illness, had my child taken away from me and spent years in mental and physical agony. Then I found I was not mentally ill but instead had a virus and was cured. There are many people like me and this book, Viral Assault, will show victims, families and friends that there is hope. This is my story.
That final, despairing, drive to San Diego was the last throw of the dice. I knew Blake was dying and if I didn’t find resolution at journey’s end, Blake was done. After so many years of struggle, it was hard to imagine that the son I had struggled for so long to help and make well might now finally be lost to me. But, as the miles flickered by in the darkness, I had to believe – had to – that something good was going to come out of this nightmare.
I had chosen the doctor in San Diego in part because in my other life, I had grown so attached to the naval base and many of the fine people who worked inside. Now, driving past, I felt some of the comfort and resolution that I associated with the base flow over me. Then I looked to my left and saw a Mercedes station wagon in the next lane and out of all the traffic in that overcrowded part of the world, I recognized the number plate. It was my friend Mary with her huge K9, Wolf, taking up most of the back seat. She didn’t see me and I didn’t honk but in a search for reassurance, I somehow found further comfort that miles away from home was a friend I knew and loved.
By the time we got to the office of the retired naval doctor, Blake was basically incoherent and barely able to stand or speak. Krista, the nurse who greeted us was like someone out of a Dr. Strangelove film: about five foot tall with enormous high heels, blond hair and a guttural Austrian accent. But her enthusiasm and laughter was a welcome contrast to my despondency and she ushered us in. Despite Blake’s terrible appearance she turned to him and said:
“Blake. You look fabulous. You should be a model.”
She was very kind and in fact Blake had been offered modeling assignments a few times but he had always turned them down saying he would ‘prefer to get paid for military service, not taking my clothes off.”
My mom and others had criticized me for ‘talking for Blake,’ so I decided this time to let him take the meeting on his own while I sat in the waiting room. He had been in there an hour when Krista rushed out into the corridor shouting:
“We need dry ice. Dry ice.”
As her heels click clacked rapidly down the corridor, my heart sank and I was overwhelmed with despair. Dry Ice? What on earth had happened?
Then Krista popped her head around the waiting room door and she beckoned to me.
“The doctor wants to see you as well. Right now.”
Oh God. A summons like that could only mean something truly awful and I felt my feet dragging as I followed the blond bobbing head down the corridor.
The sight that greeted me is etched on my pysche and held there forever as an image of terror that only later could I begin to make sense of it all.
Against the wall was a doctor’s examination table covered in books and papers, all scattered as if by a mad scientist. To the right in one of two chairs slumped Blake who was sufficiently conscious to mouth the word “Help” as I looked at him and took in the fear on his face. Over the bed opposite me was a man in a wheelchair
Slumped over the bed with one arm cradling his head, a drool of slimy yellow substance coming out of a corner of his mouth. Then I saw his impossibly curved back and his fingers curled into a claw and I realized he was deformed by scoliosis and had been forced into a wheelchair by the illness.
He asked me to move around to his left side as he was unable to move on his own and even as I moved, he could barely keep me in his line of sight. It was usually up to Krista to move him around in his wheelchair.
“Blake has tested positive for HHV-6A, Cytomegalovirus (CMV), Epstein-Barr (EBV) and Micoplasma Pneumoniae,” said the doctor. Such a litany of horror might have shaken any normal mother but I felt an enormous welling of relief wash over me. At Last. After all these years. Someone telling me that my son is ill and I’ve not been living a fantasy. I wanted to reach out and hug this extraordinary man. But there was more.
“I believe your son has Chronic Fatigue Immune Deficiency Syndrome and there is a pill for that.”
A pill? After all this struggle? A Pill? I wanted to weep and felt the tears of gratitude well up in my eyes.
“However, Blake will have to have more tests in four weeks to confirm all the positives. Then – and only then – will he be eligible for the pill.”
I had heard that some patients in Blake’s condition had tried a drug called Ampligen and asked if I could begin with that to bring Blake back from the brink.
“I’ve used that drug a lot- and all of my patients got worse over time,” he replied. Better for a short time but the end result was that it caused too many problems - Bad problems”.
I just stared at him. He handed me a nutritional diet and said “He must follow this EXACTLY before I will give him the pill and he handed me a copy of a scientific study done at Stanford by Dr. Jose Montoya.
I left the doctor’s office not with a plan for Blake’s imminent death but instead a plan for the rest of his life. Back home, blood tests in four weeks, two weeks for the results then back to San Diego. Hope.
It turned out that all the drama about the dry ice was simply because the doctor wanted to draw Blake’s blood to test his nutrition levels. Blake had no idea what was going on and feared that the doctor was going to harvest his organs and wanted to preserve them in dry ice. No wonder he had looked horrified when I entered the room.
While munching on a roast beef sandwich, Blake told me why he had been so frightened and the two of us laughed for what seemed like the first time in years. We traveled back north in a companionable silence, both of us busy with thoughts of possibilities.
After about six hours of driving I turned to Blake and asked him how he was feeling.
“Surreal, like this isn’t happening”, he replied.
The trip to San Diego was around the 100th doctor’s appointment I had made, and I had explained Blake’s illness and symptoms too many times to remember. There had been the Sheriff’s investigation, my mother’s abuse, the abandonment of my family, the poverty, the sorrow and the fear. And now, here we were driving north with a clear diagnosis and the knowledge that “there is a pill for that.” Surreal indeed.
I knew about CFS but had never heard of CFIDS and was to spend the following weeks learning everything I could about the illness. At the same time, Blake embarked on the very strict Mayo diet that the doctor had prescribed which involved not just specific food and remedies but also changed sleep habits.
At the 6 week mark, Blake was too shaky to make the 20 hour drive down so I called for help and arranged a Mercy flight to LAX where Whit met the plane. I think he was shocked to see Blake in a wheelchair but he made the best of it and kept the conversation while he drove us to the Doctor.
“The blood tests confirm that Blake has CFIDS,” he began. “He also has severe nutritional deficiencies which is pretty common with this kind of illness as the viruses and infections will have ravaged his immune system.”
The prescription was a grab bag of all kinds of stuff which began with the most important: 900mg of Valcyte. In addition there were handfuls of vitamins to be taken daily (a total of 45 in the end) and a prescription for Valium which Blake was very reluctant to take except when things were really bad.
The hope of a cure and the possibility of nightmare’s end helped our relationship as well. I think even though he felt terrible much of the time, Blake’s mind had been truly poisoned by my mother so there was always a lingering doubt that perhaps it was my fault. Maybe I had caused all this is some way beyond his comprehension. But the diagnosis and the action plan put to rest any doubts he may have had and he came back to live with me in the house where he had been raised.
The financial situation was better too. I had taken in some more horses and a couple of project jobs had come my way, which meant me being out of town for short trips. Mostly that worked well as my girlfriend and neighbor, Patton, kept an eye on Blake. One time, when I expected to be away for five days, I came back early and at night, headed up our driveway and saw the whole house lit up like a Christmas tree with loud music blaring. I dumped my duffle bags and came in through the back sliding doors to see a bunch of young men and women, clearly drunk, dressed in my fake furs, my collection of hats and some boys flouncing around in my wigs.
“Hi Mrs. R,” one of them shouted at me. “I’m wearing your pimp coat.”
I locked my gear in the safe room, read them the riot act, took their car keys and made them one of my famous spaghetti dinners. On the one hand I was pissed but then I’d done far worse at Blake’s age and I took it all as a sign that the son I loved was finally beginning to have a life that resembled that of a normal kid.
There was a certain companionship around all of this, the kind of thing that other families simply take for granted but had been completely absent for me and Blake pretty much throughout the teenage years. While I might get up early and stay up late and he would get up late and go to bed early, there were meals to be cooked and eaten together, conversations around the fire on a story night or simply an evening sitting out under the clear heavens and placing stars in the constellation. In many ways this was a magical time of connection and conversation, an opportunity to discover who we both were and how we stood in our relationship together. In some ways, it reminded me of recovering from combat: you come back filled with trauma and have to rebuild what you left behind. We were like that, coming together slowly, finding points of common contact and interest.
The baleful presence of my mother began to recede as well. Now that Blake knew that he was ill and that recovery was possible, he gained a whole new perspective on the damage my mother had done to our family.
“Now I know what she is like,” he would say.
But the change only went so far. He wasn’t really willing to talk about CFIDS and didn’t know how to tell his friends that he was ill. He was always frightened of appearing weak and chose instead to say nothing. I understood because CFS and CFIDS had a stigma associated with it back then. It was still a psychological illness, something that you hid from friends and neighbors for fear of being considered ‘mad’ or “psychotic.”
Blake tried to piece together the fragments of his life that he simply couldn't recall from the years he had been too sick. He turned to the family and crafted a series of emails to try and piece together the missing scenes from his life over the past few years. He asked about everything from holidays to birthday parties he’d attended but could remember nothing about. It was so strange to hear him talking about this as if he was a stranger looking back on someone else’s life and trying to fit the jigsaw together when most of the pieces are missing. But with the help of family and friends, his life gradually started to make sense to him and from the clarity came a new found confidence. Somehow, with the information he gleaned, he became a man with a place in life. Perhaps that contributed as much as the Valcyte and the diets to his slow recovery from the broken man he once was to a more rounded adult.
But the treatments proved to be a rocky road. Blake began taking Valcyte in 2009 and felt very ill for the first 9 months with nausea and night sweats. But gradually the combination of Valycte and antibiotics for the various other symptoms helped him feel well enough that he wanted to go back to school.
As a start, he enrolled in a single science class at Junior College. For three days each week, I would drive him there and wait the three hours until class ended as he was still not strong enough to drive himself. With a B in that class he then ramped up and took a math class and a night class in business where he struggled but got a B in the former and a B+ in the latter. Then a girlfriend, Natalie, appeared and there were even nights when he would stay over with her family with whom he got very close. Real progress.
Unfortunately, my mother seemed angry at Blake for not returning to her house and she showed it by sending me a bill for the monies she had paid for his first year at college. She also suggested that I owed for the gifts that other family members had provided while he lived with her. The list ranged from meals and groceries to clothes and shoes. I think her goal was to force me to use what little money I had to pay her back and then I would be unable to afford to pay anything for Blake and so he would fall back under her control.
She was referring to the same ledger she had begun keeping when I was 9 years old where she would enter everything from the cost of summer camp to the price of stamps for the letters she would send me. It now totaled many thousands of dollars, a complete itemization of the price of my mother’s love.
This vicious attempt to keep her power over me would rear its head at least once a week, but I did my best to keep Blake from knowing what was going on with that side of his family. My fear was that she would eventually ask for the money from Blake himself rather than holding the bills over my head. And I didn’t want him to have to endure the log that had become part of the relationship between my mother and me.
Blake eventually succumbed to the pressure and drove over to my mother's where he asked for her forgiveness for disappointing her and for her to consider doing the same for me. She magnanimously agreed and told him that his ‘debt’ was paid.
Two things happened that were to impact us long term. Blake moved into an old cabin we had which was close to college so that he could gain some independence. I also did a lot split on my ranch where I sold off all but 40 acres and generated enough cash to pay off most of the debts I had run up while trying to care for Blake.
At the same time, we had been going down to see our doctor every few months and while Blake was getting better, I was feeling really sick and the doctor himself seemed more and more infirm every time we visited. He persuaded me to have the same tests as Blake had received and it confirmed I had pretty much the same infections as Blake so I began a similar course of treatment with Valcyte and various other remedies. I had felt sick for years but had been too focused on Blake to worry much about myself. The diagnosis only confirmed what I think I already knew and it was a relief to be actually doing something for myself after all this time.
I wrote to Dr. Jose Montoya, the same man whose paper I had read when Blake was first diagnosed, explaining that our doctor was too ill to continue treating us and asking if we could transfer. Montoya agreed, so instead of traveling all the way to San Diego we now had a much shorter journey to San Francisco and, at the same time, were being treated by the man many considered the world’s leading expert on the illnesses we had.
Dr. Montoya is a kind and gentle man with a deliberate and methodical manner. He made clear that he knew about my family struggles and the charges my mother had leveled against me.
“I had my own problems,” he said. “There were people in the medical establishment who didn’t want me doing research on CFS and some wanted to kick me out.”
I felt reassured that we had a common bond and I instantly trusted this man with our lives. He recommended that we continue with the Valcyte and other remedies.
While Blake’s health continued to improve, mine took a serious turn for the worse. I was on a mission about 500 miles from home in the middle of nowhere when there was a bad accident in which 6 of us were injured, some badly. I was in pain but thought I could manage and got one of the guys to drive me home because it was my birthday and I was planning to go riding with some of my cousins. I made the date, managed to get on a horse and then fell at the first jump and landed on a rock. One of the cowboys came to help, used his knife to cut up through my pants leg, looked and said:
“Ma’am you didn’t just do this.”
I put my finger to my lips, nodded and hoped he would respect my request for silence. Those cowboys tend to be a laconic bunch and he simply nodded in return and I knew my secret was safe.
I needed leg surgery, but in the pre-operation exam, the doctors discovered I had a tumor wrapped around my liver. I’d seen myself getting larger and the guys kept asking me how I was putting on weight when I didn’t appear to eat anything. Well, the answer was a tumor the size of a melon – actually it turned out to be four tumors that had to be removed.
Recovery was especially difficult because my leg was completely screwed up and it just dangled, a useless and horribly swollen appendage. The Marine trauma doctor who was eventually to do the surgery insisted that I had to have bed rest to get the swelling down before he could operate. About a week after the tumor surgery, my neighbor Patton called by but I was stuck in bed in too much pain to move and she had to break a window to unlatch the door. She was horrified by what she saw as there was blood all over my bandages and I was obviously in a lot of pain. She called a mutual friend who advised us to strap me up with horse bandages before going anywhere.
I eventually bought a second hand RV which I parked at the back of Patton’s barn overlooking my own 40 acres and there I stayed while I tried to get well enough for the surgery. The RV was a 1976 with only 56,000 miles on the clock and an Orange Mod interior which I nicknamed Burty-O because the former Highway Patrolman who sold it to me looked like Burt Reynolds.
That Christmas, I decided to go over to Blake’s to share the Holiday with him and Natalie. I imagined a fun family time with presents and roast turkey in front of a roaring winter fire but it didn’t turn out quite like that. Blake told me that Natalie had borrowed his car and Blake had walked three miles in heavy snow to find out why she wasn’t back. He had found her in the car with another guy and understandably felt completely betrayed. As a result , we spent Christmas day packing up all Natalie’s stuff and ferrying it to her house and that was the end of that.
Dr. Montoya had made very clear that emotional trauma can set back recovery from CFIDS for months or years, so I was concerned that a visibly distraught Blake find some way to keep calm. I stayed over for a few days and watched anxiously as he came to terms with his personal betrayal.
I had the first leg surgery in February, nearly eight months after the accident. Blake took me down to the city to meet my friendly Marine trauma surgeon. I knew the surgeon was concerned because I reminded him of a girl he had operated on in terrible conditions in Operation Desert Storm and she had lost her leg. I was clearly a high risk given all the infections and the treatments I had been taking. The reality was that if I got another infection, there were no antibiotics strong enough to take care of it.
The first surgery went well. I woke up within 25 minutes after the surgery and pulled the tubes out of my arm, sat up, swung my legs over the table, stood up and immediately did a header into the glass observation wall. It never occurred to me that I wouldn’t be able to stand after the surgery. It would take me a year to realize that I may never walk again without an aid, let alone run, swim or ride a horse.
Blake got me back to the RV where I was living, then went onto to his life back at the cabin. Patton, my neighboor, was my primary caretaker for the spring, summer and fall. She brought me groceries, made me shower whenever she could, helped me in and out of the RV, although that was difficult. Patton is 5’2” and I am 5’10”. She weighs in at about 127lbs, me at 150lbs on a good day. She had been used to my physical strength, especially my upper body strength. In this case, she had to hoist me around with 35lbs of extra body weight and swelling. At one point- she was trying to get me into the RV and onto the lower bed. We didn’t think it would be an issue, us being us. Well, the leg wouldn’t move, I was basically dead weight with no upper body strength left.
“Come on Julia,” Patton said. Come ON. You can DO IT.”
I was trying but without success.
“Come on ORCA!” Me? A whale? That really got me going and with both of us laughing hysterically, I got into the bed.
The results weren’t so good about Blake as the spring semester went on with weight loss and falling grades. Such is the world of CFS and CFIDS: one moment recovery looks set and the next one of life’s curveballs hits that would have no impact on a healthy person but can be devastating for someone like Blake. Just how true this was I came to appreciate when I started a blog to share my experiences with CFS and CFIDS. Through the wonder of the Web, I learned that there were thousands of people like me and I was so moved as they recounted their stories of tragedy, discovery and loss. In many ways, I learned I was one of the more fortunate. After all, I had got a diagnosis, my relationship with my son had continued, he was still alive. There was much to be thankful for and I understood for the first time how different things might have been – indeed how different and difficult the illness and its consequences were for all those who contacted me through the blog.
Even though he was sliding downward, Blake remained determined to move forward, even though he didn’t know exactly how. His first plan was to move out of the cabin and camp in a tent next to my RV. Then he wanted to apply to an Oregon University. I think in some ways all this movement was simply Blake trying to escape the chains of his illness; movement instead of substance. But I wanted to encourage him, and helped him with the college applications and we rented a house together near the University with me living on the top floor and him on the ground floor. Looking back now, I’m not sure this was the best decision. Here was I, his mother, living in the same house as my son while he tried to find a new community at college. I wanted to be there to protect his health but I think he came to resent me and probably his friends made fun of his living arrangements.
School began in September, and Blake began his studies in engineering and military science . I talked with the guys at the ROTC program and they made an unusual internal decision to allow Blake attend the classroom ROTC classes and forgo the tactical and exercise portions. Blake received credit for the in class units, then eventually was invited to participate in the exercise and tactical exercises.
The University was in a pretty liberal town with tons of aging hippies choosing to live out their retirement in the community. Weed is the drug of choice and just about every other narcotic is readily available. So there is a fairly hard party culture with drink and weed the intoxicants of choice. Blake wanted his share of the action and I watched him gradually integrate into the community with a wide circle of friends. As long as he was healthy, all this was fine with me and a welcome contrast to the sense of isolation we had both experienced at the ranch.
As so many others discovered the course of recovery from CFS is filled with pitfalls and Blake had his share of them. There was pneumonia in the Winter which hit him so hard that he couldn’t finish the term. But, while the town may have a ton of drugs, it also has just about every variety of alternative health care available and the college doctor recommended a naturopath who proved to be a wise man and a perfect fit. Blake was back on his feet after 30 days.
After the winter scare, we eased him back into the routine of Spring term, and things went off without a hitch. In fact, it would be the first quarter in a decade that he did not miss one class or one day of school. He made the decision to stay living with me that term but he went back to being with other students during most of his free time. I knew the new college students were eager to have fun, drink and party, and I chose to let Blake make his own decisions. So long as it didn’t affect his health too much or his grades, I did my best to stay out of it, and Blake did just fine. He kept his grades up and made sure to remain diligent with his medication to keep him on track to healing.
He entered a summer Math class at a satellite campus and aced it. Once again- he went a tight 4 weeks 5 hours per pay-4 days a week without missing school. He was getting nutritional IV’s twice monthly, or weekly if he felt a little off.
It was in July of that summer that things really changed. I had gotten Blake a few books for Christmas and he started reading one that summer. I woke up before daylight to the smell of freshly cooked breakfast. As I went from room to room, Blake was nowhere to be found. I made my way to the front door and tripped over something large in the dark. I switched on the light and there was Blake’s Yellow Labrador sitting steadfastly staring at the front door. My stomach fell as I checked his room and saw his boots were gone. I checked the gear closet and his backpack was gone as well. My heart sank as memories flooded back of times he had gone off with his pack full, not knowing when or if he would come back.
I sat on the couch, a Labrador on each side of me not knowing what to do. About 2 hours later, Blake came bounding in the door, threw off his pack, laid down on the rug and said “whew”. I asked what was in the pack and he said “Wood”. There were about 4-6 logs, probably weighing 35-40 lbs total and he had started walking and then running a 5 mile loop. After he said he was off to shower, something caught my attention on the stand by his bed. He had been reading Lone Survivor by Marcus Luttrell which was one of the books I had bought him. He had been inspired to ‘try again’. To try and exercise harder. To try and survive. To try and run. It was a new beginning.
As Fall rolled back around, he began getting aggravated with me, he wanted to live on his own like his friends were, without the burden of having their mother around. At his age, I’d been living apart from my family for years and I knew he must be getting anxious to get back to a life on his own. So, in November, I moved him into a hotel just across the street from campus until the student housing was ready. The Motel had a weekly fee for students, the room had a mini kitchen and was right across from the school. Many students lived there year round. Blake only had four weeks left of the quarter- then he planned on spending two weeks with Gus skiing, then two weeks with me at a cottage I had rented over on the coast. Then, he was moving into his own student housing apartment in January.
I took my cue, moving to a little town on the Oregon coast. I was still recovering from the leg operations, missed the saltwater and sea and needed some time by myself to heal in a beautiful environment. I had also, by chance, been offered a small project on the Coast which fit my schedule perfectly. I hadn’t long settled into my coastal life when I received yet another of those calls that every mother living with a child on the edge absolutely dreads. But it turned out to be something of a surprise.
“Your son has been hit by a car,” the anonymous hospital voice informed me. I raced back to Blake that night to find him hobbling around with a swollen ankle.
I knew this accident would take another toll on his mental and physical health, not only from the crash, but from the way CFS reacts with trauma. I was really angry because the driver hadn’t even braked as he he ran into Blake at 35mph on a crosswalk in front of the University. Just before impact, Blake had jumped into the air and tucked his legs up and so he hit the windshield of the Prius only to bounce off the car and land on his back on the median. Blake insisted he was fine and while the doctors insisted that all would be well, I feared that the trauma would bring back all the old health issues.
Within all of this drama that had been so much a part of Blake’s life for far too long – sickness, the tension between him and me, him and my mother, the break up with his first love – he was really on a quest. Like many people his age, what he wanted above everything else was sanctuary, a place where he could belong and feel safe. Unfortunately, when he was approached on the University campus by someone asking him if he wanted just that, he replied that he did and went to a church service. The ‘friend’ turned out to be a recruiter for the International Church of Christ (ICOC) a ‘church’ that specialized in recruiting members on college campuses.
I learned later that the ICOC had been banned from college campuses across the country and was widely derided as a cult. It’s teaching turned out to be a fundamentalist interpretation of the Bible but in addition there was a requirement of absolute obedience to the person further up in the hierarchy. Its pyramid structure made the organization very authoritarian and once within its clutches it was very difficult to escape.
Coinciding with his recruitment into the cult his grades began to slide and I learned that he had invited a member of the church to come and live with him. The church came to dominate his life to such an extent that everything else was secondary. He no longer wanted to join the military, which had been a lifelong ambition, because the ICOC was against it. It seemed to me that the church member who was living with him was more of a controller than a friend and I felt that our conversations were monitored. As part of their process, the church promised ‘love’ but instead kept a list of ‘sins’ that were used to threaten every member with damnation (it reminded me of my mother). At the same time, Blake started giving away all of his belongings to other church members and he started taking weekend jobs with long hours in order to tithe to the church. His entire existence became studying with this church, where he had a “new family” that knew the “right” way of the bible as opposed to “other ways”. It looked like CIA Mind Control 101 to me.
I started researching the church and found out it had been started by a guy called Kip McKean in 1979 with headquarters in Boston and had grown very aggressively across the world, mainly through recruiting on college campuses. McKean had been forced to resign because spending got out of control and other members felt he had advanced a cult of personality at the expense of the church. Both 20/20 and 60 minutes exposed the organization as a cult and the ICOC was banned from 40 university campuses across America. I wrote to the President of Blake’s University telling them how my son had been recruited on his campus but I never got a reply.
It was beyond tragic for me to see all the years of effort we had put into getting Blake healthy wasted and instead of living a full life he was being suck further into the church’s deadly embrace. I sent him emails documenting how the cult worked and exposing all their lies but I image he either didn’t read them or his minder read them first and deleted them from his computer. Conversations became more difficult and more distant as I imagine my voice sounded just like every other person who had criticized him for not running a race or not making the grade.
After so many years of struggle and just when I thought I had found my son who I had thought was dying he was truly becoming dead to me. I was heartbroken and didn’t know where to turn. I consulted friends and people who specialize in extracting people from cults. While everyone was very sympathetic, there seemed to be no simple answer as the ICOC was particularly effective at keeping a very tight control over its young members. There was ample evidence of this as the church got him to move out of student housing and into a house they owned so contact between us became even more difficult. Consumed with his ever expanding duties for the church it was clear he was being stretched far too thin and his health was certain to suffer. The final blow came when he dropped out of university in his senior year so that he could devote even more time and energy to the church.
If he had found a new home, I felt totally lost and was overwhelmed with grief for the son I thought was gone from me for ever. Just a few months earlier, everything had seemed great: Blake had been diagnosed and the treatments he was receiving for his various illnesses all seemed to be working. He was on course to graduate from college and with the help of a sympathetic ROTC he was likely to realize his life’s ambition and join the military. He had real friends for the first time in years and I thought we had finally triumphed together over all the curveballs that life had thrown at us.
But behind the despair, I chose to see hope. Blake was a tough guy who had overcome so much. He had shown real courage and strength of character. I had to believe that while the church might seem like home today, the real Blake I knew and loved would find his true voice once more and seek a more fulfilling life away from the church’s dead hand. I had to hope. It was all I had left.
This is Julia Hugo Rachel. Next week, I’ll be looking at HHV-6, Epstein Barr and mouse Leukemia and their relationship to CFS/ ME.
Julia Hugo Rachel
Diagnosis & Treatment; Hope & Despair
One woman’s journey into medical hell and the lessons that will help cure millions.