Chapter Nine: The Miracle of Life
By: Julia Hugo Rachel
Copyright Julia Hugo Rachel 2016
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.
By: Julia Hugo Rachel
Chapter 9: The Miracle of Life
As the question of what to do about the church continued, I took a different route and detached. It seemed to me that the embrace of the church was so close, so confining that there was little room for me to have any direct influence on Blake. They had begun to own him, body and soul in ways that a mere mother finds impossible to combat.
I had thought of multiple ways of bringing Blake back to me. I could get a few of the boys and simply take him. Easy to do but much harder to convince Blake — now a stubborn and independent man — that what I was doing was right for him. Then I could have organized a cult intervention with some psychologists and former cult members. That, too, I could do but I thought of that as very much a last resort when all else failed.
Then I could do what I had not done through all my relationship with Blake: trust in my son. I had to believe that the courage he had shown in dealing with his illness, in standing up for himself in the face of my mother’s overbearing control suggested a deep strength of courage and character. I had faith that he would see the right road and take it.
Since I had already sent Blake emails describing the ICOC and its operations, I felt that the best step to take at that point was to just let go. Since my health was failing, I needed to take care of myself. As always, in times of deep distress, I consulted Whit and, as always, his advice was wise: “He is a grown man, there is nothing you can do”.
Instead of trying to control Blake, I began to address my own health issues. I had made the life decision to join forces with my partner who moved out from the East Coast after Blake moved into student housing. Friends for over two decades, we became partners once and for all. For someone who had been so focused on Blake and our fight for health, it was a first to allow myself to fall in love and to commit to someone who loved me. The degree of trust that required was exceptional for me but I embraced the opportunity with all my heart.
I was still not walking well and I understood — perhaps for the first time now that I had stopped to draw breath — that I had serious health issues that I had put off. During the accident, I not only injured my leg but my jaw had fractured and two teeth had been knocked out. My doctors told me that I needed four rounds of dental surgeries, several more GYN/abdominal surgeries, additional leg surgeries, an arm surgery and three vascular surgeries before I would be able to be whole again. Plus, I had suffered a fairly extensive head injury, which was on top of four major previous head injuries some incurred doing various jobs overseas. I was told clearly that I had to stop and take care of myself or things could get really bad.
A team of specialists told me that I would remain a patient of Montoya’s for life, but I needed to be somewhere where I could learn how to walk on flat ground again — the uneven grounds of the ranch were unsuitable to regain mobility- and I needed to be close to four or five different types of trauma and surgery centers. The only place that seemed plausible on the West Coast were the surgeons and medical care of the Southwest. It was decided the sun would probably benefit me for the type of infections I had going on. Perhaps I would heal faster in a warmer climate.
These surgeries required constant appointments, aftercare and check ins. With no time limits and no idea how long the surgeries would take or even what was really involved, I had to accept that I was in for much pain for a long time and would be in almost constant rehab, perhaps for years. I would have to find a place in Arizona to begin my surgeries.
We rented a place on a small airstrip. The community was small and welcoming. We eventually bought a place in the mountains as a place for shelter for as long as I needed to be in Arizona to connect with the surgeons and trauma centers.
When I arrived in my new town, it didn’t take long at all to begin getting things worked out with the doctors. In fact, things were going surprisingly well, better than I had ever expected. The people were very kind and what I liked was the amount of athleticism and outdoors sports that so many desert residents enjoy. Hiking, mountain biking, riding horses and swimming became goals in my physical rehab.
Since Arizona is a border state, project work seemed to abound. At any time on any given day I could pick up spare jobs I was offered. The Dutch K9 by my side only made my presence on projects more desirable. An additional benefit was that I was close to an airstrip so getting in and out was easy and doing so without attracting any attention was an added bonus.
One surgery led to another and they all rolled together over a period of 3 years. The recovery times were increasing with each surgery. There were times when I was bedridden for 3 months at a time. Other times, I was able to walk after a week or two. With each surgery, it became increasingly obvious that my infectious diseases were rearing their heads. This is exactly what I had heard from others and read in the research: that additional trauma can somehow provoke the body into a relapse into CFS, a condition that until then appeared to be held at bay.
I instinctively knew I would be put back on Valcyte or Foscarnet (another antiviral medication) in the future. What was not clear to me was whether I would be eligible for either drug this time around. I had already been on Valcyte for three years and although there had been a four year break, there was a risk that I would be ineligible as a candidate because of the long term side effects of Valcyte are as of yet unknown.
While I developed in my own new life, Blake was still back in Oregon focusing on his. He was still on the same path in school, doing well and spending time with the friends he’d made along the way. He was still involved in the ICOC and living with Church friends in a house outside town, in a fairly rural location, and continuing to learn to fend for himself. His little brown farm house was relatively secluded from the rest of the town, but he liked it that way.
“It reminded me of being home again,” Blake said “It was really nice.”
Being secluded also helped Blake to focus on his engineering homework for school, with less people around, there was less chance of getting distracted with partying and hanging out. Although the house started out as a good place to study, the church began taking up more and more of his time, dictating where and how he spent every moment of his day. I was growing alarmed at this. Yet, I stayed supportive hoping that someday he would see what this Church was really about.
While I worked out my own finances, I continued to help Blake pay for what I could, but the rest came from financial aid and disability payments that came in by month or at least every few and helped to keep him afloat with the cost of rent, food and school books. Blake had been put on Disability for CFIDS and as the doctors did not feel a recovery was likely, he was entitled to his disability.
Books were always monumentally expensive and it was surprising to see how little use he would get out of each. It seemed he’d be done with a book and then moments later be trying to sell it back to the bookstore for a meager price compared to what he had paid. Those he didn’t sell, he held on to, hoping to come back to and gain some more knowledge from down the road. And because he had to take a great deal of science classes, sometimes those that would even offer a peek into the medical world, he was able to pick up bits and pieces that would help with even just a slight understanding of his illness.
It was a weird kind of half knowledge though. He was still too embarrassed to talk about his illness to his friends or his teachers with that mixture of shame and willing ignorance that so many people have. His pride prevented him from saying anything and anyway, he was certain that nobody would understand. The result was a smattering of knowledge but a determination not to actually directly research CFIDS.
When he joined the ICOC, he stopped drinking and this was a huge improvement over his habits from the previous terms. Looking back at it now, Blake said he regrets all the partying, but when it’s what everyone else in college is doing, it’s hard to avoid.
His roommates were on about the same schedule and academic route as him, though they studied different topics: biomedical science, music, teaching and computer science. Blake felt back to being normal with this group, and while his illness still produced lingering effects, he was surrounded with support in men his own age who could show him the way.
At times today, he still looks back and recalls the hard days, the ones when he was depressed and felt he had no purpose. And while those days were juxtaposed by the good ones, Blake now says that he had become good at normalizing the situation.
“My life isn’t that bad,” he would say to himself. And though compared to many, it wasn’t, but when compared to the lives of those who surrounded him, it was still difficult.
One additional benefit of the college structure was that he was able to pursue his lifelong ambition of joining the military. Given my own background, I wanted to encourage his ambition because I felt strongly that the support of the military would keep him grounded and the sense of mission might give him purpose. He joined the ROTC and showed tremendous determination in working at the courses and especially at getting fit. I watched admiringly as he worked his way up from the slowest D running group to the fastest A running group and it looked as though he was coming back strong physically which was great to see and hear about.
However, on the more difficult days, he found solace just being alone and keeping to himself. Separating from the rest of the world kept him from talking and allowed him to be introspective for a while even if just for a few hours.
His studies of engineering were fostered during this alone time, and he would putz around with this or that, building items big and small as a form of meditation.
He also formed daily habits which helped with this meditation process when he wasn’t able to get away from everyone. We each find our own way to deal with and cope with life, and this was his way.
In Blake’s darkest times back at the ranch, he would walk a ways to a dry creek bed we have. He built a “Hut” that he improved over the years that was sturdy, made of downed wood light enough to carry. He layered the wood and figured out how to design the Hut so that it could withstand high winds and big snow storms. The hut became his engineering masterpiece with what little he had to work with.
“It wasn’t really huge,” Blake recalls today with a laugh. “To me, it was.” Blake would crawl into the hut and think. He would always come back to the house a little happier than when he left, albeit tired from the walk.
“It was my reflecting area,” Blake said. “I spent a lot of time there, made these little paths and I took little rocks and I’d line the entire path with them on both sides.”
The hut project became much more than just a clubhouse in the woods. It was a little fortress. The site was interesting because it was around the bend from where our ranch dogs were buried, which only proved to add more sentiment to the place he already loved.
“You just go out there and you listen to the birds and spend a lot of time just looking at the junipers and almost relating to that,” Blake recalled.
Every once in awhile, a heavy rain would come in and collect in a little pool outside the hut, making a little place to wash off the dirt from his hands when he would come back to check on the place.
He would never stay out there overnight, considering the animals that would come out when it got late enough, but he would often be gone at least a little past sunset. It reminded me of a little kid, though he was well on his way to adulthood by that time. He even would take his trusted labradors along with him.
When I look back on that time with the Hut, I think it was then that Blake got to foster the introvert within him. He needed the space from the drama of life, the constant fighting between my mother and me and he probably needed the time to just be calm, to try to find a little peace in his troubled world. Living in a group house must have been challenging, especially when the Church tried to control his every waking moment. So, it was no surprise to me that he needed to find space for himself. He enjoyed taking his yellow Labrador for long walks around the lake up the road from the house.
Though she did not communicate that much with me at the time, my mother would occasionally come north to see Blake and take him grocery shopping. She still wanted him to be part of her life and he was willing to accept her as she was. She had lightened up towards him a bit and began to treat him as more of a grandson than someone she had simply lent money to. She helped out with luxuries from time to time as a doting grandmother does.
I talked to my mom on a few occasions, but each time I felt her fangs come out, I backed away swiftly. Eventually, I stopped communicating altogether.
I made sure I went up to visit Blake at least every quarter when we would have lunch or dinner. I’d take him shopping and of course I still helped out with paying for necessities that his monthly stipend did not cover.
In the Fall, about 6 months after Blake moved in with the church friends, he called.
“Mom, I can’t keep up in school. I want to work, I just can’t think and focus on my studies.”.
After all the effort we had made, all the money that had been spent, the idea that he was just giving up school was a real shock. He had begged to go to university and I had moved heaven and earth to make it happen; moving into a house to live in the same town, scrimping and saving to make sure he could afford to live at college, traveling to and from to visit and encouraging him every step of the way. And now he was just going to give up and take some menial job?
My first concern was, is he dropping out because he is sick? Had he lost focus because CFIDS was once again taking over his life? Or was it more that the Church was proving such a burden that he couldn’t handle the pressure of that and the senior year caseload? But however hard I pressed, the only answer I got was that he just wanted to be ‘normal” which to him meant dropping out of school and getting a job in a restaurant.
But ‘normal’ only went so far. He certainly wanted to earn his own money which was fine but the fact that he wanted to donate more money and time to the Church was not so great. It also looked like he was going to drop out of the ROTC course which was heartbreaking after he had put so much effort into bringing himself back to the fit man he used to be before the illness.
But ever since he was hit by that car, he seemed to make rash and illogical choices that would take him away from his military and career choices and I worried that the physical trauma from the car hit was flaring his CFIDS.
I asked Blake to get back to Stanford to get tested and to stay on track with his naturopath. Blake declined to do either. I started seeing a shift away from my advice and even further towards the church. At the same time, his grandmother became involved with the church and began attending services with Blake. I was simply astonished that my hard bitten mother, who had always seemed almost untouchable to me, could suddenly fall for such an obvious scam.
I tried to talk to my Mom about the church and about all the research I had done that showed very clearly it was a cult. But just as she had done when Blake first fell ill, she dismissed all my concerns saying: “You are over reacting”.
It was all too frustrating and once again I felt like I was losing my son after so many years of struggle to keep him alive. And once again, my mother was taking his side and was refusing to listen.
On the positive side, Blake was supporting himself for the first time in his life. But, every day the church’s influence became stronger. Now, not only had he dropped out of college leaving me to pay the college loans but he also became angry at the very idea of going to college in the first place. He now adopted one of the church’s tenets as gospel: “Education does not do much for you, but a hard working job is the way to go.”
On one of my quarterly visits to see Blake, I drove up to the parking lot to pick him up for dinner after his last University class of the day and saw a girl sitting on the grass with Blake lying next to her. She was caressing his hair and I thought “uh-oh”. It seemed a bit sensual to be presenting for a first encounter with “Mom” but Blake introduced me enthusiastically to Kathleen, his girlfriend. I had the truck and the back seats were folded down as the dog was sleeping on the bench. Blake climbed in the back and sat with the dog. Kathleen hopped in front and said “nice truck”.
Kathleen was a pretty girl with shiny long hair, medium build and average size. I introduced myself to her and sat across from them at a diner Blake and I enjoyed in town. They seemed infatuated with each other and as we waited for our meal, they played patty cake and laughed in the booth across from me.
It was a slightly weird experience because this was the first I had heard of Kathleen and yet they seemed so immature, more like early teenagers than a more mature couple. As I sat across the table from them, I realized that although Blake was 24 years old, he was acting much younger. CFIDS had robbed him of precious years where he would have developed socially and matured normally. I felt sad and somehow sensed my son would now have to go it alone. He was destined to learn life lessons in his 20’s rather than in his teens like a more normal child.
After dinner, Kathleen never said Thank You or Goodbye. Flint said “I love you Mom” as they walked off hand in hand.
A month or so later, my partner and I were travelling up the highway to move more stuff back to Arizona when I received a call from Blake.
“Mom” he said in a slow tone.
“Yes honey” I replied.
“How far away from me are you?” he asked.
“About 12 hours,” I replied.
“Good, then I have time to pack before you hunt me down. Please don’t kill me.”
We had long ago made a pact that he was never to get a girl pregnant before he married her. Blake was calling to let me know that his girlfriend of only 6 weeks was pregnant and they were having a baby. I stayed calm and loving on the phone as I drove up the Mojave desert out of Edwards AFB.
A week later, I found out that Kathleen was a Type 1 Diabetic and the baby would have Caudal Regression Syndrome which is a congenital disorder in which there is abnormal fetal development of the lower spine and the prognosis was unknown for her and the baby. My first concern was for Kathleen. My second concern was for Blake’s health. My third concern was for the welfare of the baby.
It all seemed extraordinarily irresponsible to me that after all the education he had, a 24-year-old man would not know better than to participate in an unwanted pregnancy. I asked Blake all the tough questions a mother would do: Was this really his baby? Was he prepared for all the emotional and financial trauma that bringing a severely damaged child into the world would inevitably bring into their young lives.
I had experienced the financial and physical toll of taking care of a bedridden Blake for over a decade. Caretaking a sick child long term can have devastating effects. I was concerned Blake would relapse with his CFIDS and not be able to provide for Kathleen and the baby. Was Blake equipped to handle a disabled child who would need a plethora of surgeries, might live in a heightened state of pain and need extensive medical treatments and therapies 6 hours away from his home base?
The questions came thick and fast and to all of them, Blake insisted that he was ready for the responsibility, that he understood what he was taking on and was fully committed to Kathleen and the baby. So, there it was. Barely recovered from his illness, dropped out of college, in a dead end job and now confronted with the terrible challenge of brining up a severely injured baby. This is not the life I would have chosen for my boy. But then he made very clear that this was not my choice but his.
To reinforce his determination and independence, Blake shortly afterwards announced his engagement to Kathleen. It was a move that I supported as I am old-fashioned enough to believe that a formal family structure is better than casual sex followed by a casual baby. But there was some good that ended up coming out of all of this.
The church wanted to play a central role in the wedding and agreed both that the ceremony would take place in the church and that the church officials would help with the planning. I was kept outside of all this as my mother moved herself front and center so that I never even got an invitation to the wedding. But then when everything was settled and the happy day was imminent, the church started criticizing Blake for some alleged breach of church protocol. At the last minute, the church punished Blake by telling him and Kathleen they “were bad and could not have that wedding in the church on that day”.
Blake was furious, especially as he felt that he had done nothing wrong, or at least nothing that the church leaders hadn’t done themselves. Fearing they were losing Blake, the church tried to apply more and more pressure to make him stay. But that stubborn streak appeared once again and he was determined to walk away.
As Blake and Kathleen prepared for their baby’s arrival, Blake’s grandmother grew more excited and became central to the planning around the event while I was pushed more and more to the side.
The baby was born prematurely with caudal regression syndrome, heart issues and several other medical challenges. Her medical surgeries were extensive in her first year of life, yet her resilience shines through with each and every step. I flew up when Angela was born and stayed for 4 days. I brought meals to the Hospital for Blake and Kathleen as they were absorbed in the ICU with their new baby. I didn’t get to hold her because I contracted a cold on the flight up and would not be safe to go into the ICU baby ward. I felt honored to do what I could for the kids.
This child is a miracle.
Angela is my only grandchild and I feel blessed to have her in my life but creating a meaningful relationship is currently very hard. I would love to have everyone to stay, or to hold the little girl in my arms but such intimacy is not in my life right now. Blake has fallen back into a pattern that is all too familiar to me from the period when he was really sick and my mother called in the cops with the false allegation of child abuse. His better health has allowed my mother to get closer and slowly squeeze me out. I still pay his monthly loans, visit once a quarter or on birthdays and help to ease Angela’s path in the world with gifts and love.
But right now, there is no room in Blake’s life for me or anything I have to offer. Phone calls do not get returned. There has been no Thank You notes nor even acknowledgments for presents sent. I am not included in Baby Showers, Baby birthdays or even Holiday cards. I am reduced to my Aunt telling me how much she enjoyed the beautiful Holiday Pictures from Blake and Kathleen, which I never received.
I am sad. When I break it down, I think it is a combination of divorce, a divisive grandmother and my reaction to her and most of all, a chronic illness. There is no way any of us go through CFS/CFIDS and come out the same. We just don’t. Some patients remain in a bad place for ever. Some patients miraculously and spontaneously get better. Some patients improve in spurts and some patients improve and become progressively better where they lead better quality lives. But we are never the same as before the illness.
In July 2016, I met Blake at the hospital in Palo Alto. I was going for my dreaded exam after the last of my surgeries and Blake was going to try and get his medical release to join the Military. With Kathleen driving, they had driven for 7 hours as Blake did not get off work until midnight. I greeted them at sunup in the parking garage of the hotel. Blake came bounding out of the car- gave me our signature “Italian kiss”- both cheeks- emphasizing the Mwah-Mwah sounds- then he started jumping up and down and twirling around with the Dutch Shepherd dog, Beraff, at my side.
Highly trained and not one for outsiders- Beraff danced around with Blake. Blake grabbed Beraff’s kong and swirled around quickly saying “you want a piece of this- DO YA FEEL LUCKY?” Don’t you dare bit me!” They played a few minutes and during those moments I knew two things with absolute clarity: Blake would make an excellent K9 Handler. No Doubt. More importantly, I appreciated yet again to the depths of every fiber of my being that I love my son. He is my life, the reason for the struggle and all the hardship.
To our amazement, the doctor gave Blake the all clear to join the military. It’s a miracle that after all this time, he can finally realize his life’s ambition. For now, he’s applying to the National Guard and we’ll see. Until that gets sorted out, he’s working two full time jobs and providing for Kathleen and Angela.
Although Blake and I are not close at this time, I know my son. I raised him, I honor him and I deeply understand his skills, character and wisdom. Blake needs to grow up and experience life on his terms. For a decade, it was just me and him in a weird world living with acronyms and endless doctors’ visits. A world so out of the norm, people with no empathy judged and did their best to destroy what little we had.
I know there may be a call in the future where Blake needs help with the illness he is running from. On the other hand, I am hoping that never happens and that he is miraculously healed. I have faith he and I will be on rock solid terms together.
I am at peace with the decisions I made when raising Blake. I have no doubt at all that if I hadn’t got in my car and drove through the night to find the right doctor then Blake would be dead. I have no doubt we will land on better soil together. He is my son, I raised him, I respect him. I have faith he will mature and show up.
In a way, it’s a sad time for me. In another way- I feel that our journey and what I learned and continue to learn about these string of illnesses still needs to be told to the world. Last month, I was at an appointment with my arthritis doctor. He has asked me what I was doing and I told him I am working on a book project. He asked “what about”. We have talked about ocean swimming, sharks, open water gear, diving and sailing and always do so with joy and enthusiasm with each other. When I answered “it’s a book about Chronic Fatigue Syndrome, PTSD and Gulf War Illness”, his eyes literally glazed over and he looked down at my chart. At that second, I smiled to myself. There was a time when I would have felt a pang of hurt at the lack of understanding, but this time I smiled. I thought “that glaze is going to get wiped off your smug face soon enough”. I am not vengeful, I just feel obligated to let the world know that their glazed looks, their smug showing of what they don’t know and their idiotic thinking surrounding these illnesses is a paradigm. A paradigm wrapped in stupidity.
A researcher I have grown very fond of and whom I admire greatly said it best in an interview last year. Here are some of his words.
“Those that have served with Gulf War Illness, suffer in silence because they do not want to speak negatively about their Country which they Love”. Gulf War Illness is in existence because of an externality of War. An unintended consequence. In the world of Intelligence, unintended consequence was a phrase I became all too familiar with.
“Doctors don’t believe Chronic Fatigue. Therefore it doesn’t exist”. If you don’t believe in something, than how can it exist? If your doctor doesn’t believe it, you can bet it wont be recognized, therefore wont be treated.
“Stress is really a way of Labeling Something so you don’t have to do anything about it. Blaming the patient for the illness (by labeling it stress) makes it their fault”. Therefore, the justification for doing nothing appears. And the less that is done, the less money spent on each patient.
As I move forward in my life, I become more and more grateful for the treatment I have received. After the last 4 years of intensive surgeries, I am back into treatment with heavy anti-virals and antibiotics. If I don’t do this, I will become weaker and weaker as the CMV and co-infections ravish my body. If I don’t take the treatment, I will not sustain the work I love to do, accomplish my goals, ride my horses, be a good partner. I have people and animals that depend on me. More importantly, there are people and their animals who are as devoted to them out there that have no life and no voice.
If the strength and experience I’ve acquired through this unusual and unique medical treatment gives me a voice to speak for the millions that can’t scream, so be it. I hear so many silent echoes, its heartbreaking and truly disturbing. I cannot fathom why intelligent people would have such wanton disregard for those who have served their country honorably and those citizens for whom they protected.
When my partner and I were packing up his house in the South, I came across wonderful Victorian era miniature antiques. I claimed these items for my granddaughter along with a variety of handmade children’s rocking chairs. These items sit in my garage waiting to be restored and lovingly placed in a children’s room we are creating for when Blake and his family visit.
This is Julia Hugo Rachel. Next week, I’ll be sharing my action plan for our country to finally confront the illnesses that have caused so much devastation to veterans, their families and millions of others. The time is now.