Chapter Five: A Dying Son and a Mother’s Revenge
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 5: A Dying Son and a Mother’s Revenge
As the illness took hold, it was both tragic and incredibly frustrating to watch Blake transform from the smart, aggressive sports loving teenager into someone quite different. Here was my boy who I loved so much and who had always been so full of energy become transformed into this teenager who hadn’t even got the energy to get out of bed in the morning.
It began with him appearing groggy in the morning with my having to wake him up and coax him out of bed to drive the three miles to the school bus stop. Before the age of 14, he was full of excitement for the day and then after a hard day of sports he seemed unable to bounce back the next morning. Then, it progressed so that it was more random and seemed to have little to do with how much he had exercised the day before.
I would take his temperature and find it was slightly elevated but certainly nothing to worry about. However much I encouraged him to get up and go to school, he would simply roll over with a groan.
“Mom, I can’t go to school. I don’t feel well. I’m sick.”
Despite the apparent exhaustion he had trouble falling asleep, didn’t want to go over to Grandma’s house and basically wanted to stay in the house and stay in bed. His appetite fell away as well as he claimed the smell of food made him want to vomit.
Of course, the school noticed his absences and I got the local doctor to write up sickness notes even though he was unable to provide a proper diagnosis. As that first year of illness came to an end, Blake seemed to get much worse, claiming of severe chest pains when running that were so bad he felt his heart was about to burst out of his chest and what seemed like exhaustion was augmented with recurrent bronchial and sinus infections combined with weight loss.
Meanwhile, I continued my intelligence work for different parts of the government that were concerned with drug running and terrorist activity in the Western states of the US. I had a lot of experience at reconnaissance and surveillance and was able to help out in some difficult operations that brought some bad guys to justice and prevented some operations that could have caused heavy loss of life. Over the years, I had got to know a good number of special operations forces as well as law enforcement folks from different agencies. I’d come to admire their courage and commitment and remained determined to play whatever part I could in keeping our nation safe. My challenge was that the sicker Blake became, the less able I was to take time away from him to do what was needed.
My particular skills were in reconnaissance and surveillance where a single female can be especially valuable. I was often able to go where others could not and gather intelligence that might others prove impossible to get. On one occasion, I was called out suddenly to see if I could help identify a bad guy who was planning to do America great harm. He was at a given location that I had to drive to in the middle of a dark and stormy night. In the event, the weather became so bad that I had to break my journey in the only motel for miles around in the hope that the weather might have improved by morning. It was a real dump and I felt pretty insecure on my own in the middle of nowhere. I was woken in the night by the headlights of a car pulling up outside the room next to mine. Peering from behind the curtains, I was astonished to see the man I had been asked to track and photograph getting out of his truck, knock on the door next to mine. In the brief moment that the door opened and a man inside handed over a package I was able to snatch some photographs which proved of great value as it helped to identify some new dimensions to the cell that we were tracking. I was very grateful to the storm that by chance had landed us all in the same place at the same time.
Such diversions became increasingly rare as Blake got sicker. The unidentified sickness seemed to be eating him alive from the inside out, robbing him of life and his personality every hour without a diagnosis. Though the deterioration had been an ongoing struggle through his sophomore year of high school, it seemed to double in speed during his Junior Year. Each day, he would wake up would be a toss up between making it out of bed or barely being able to sit up. I’d go to his room and check on him around 6 or 7 to see if it would be a day when he would make it school or have to miss again.
In one span of 61 days, he missed school 28 times. I took Blake again and again to Bill, his local MD but got nothing but vague answers about ‘hormones’ and ‘teen pressures’. I sought out different specialists because as Blake got sicker, I searched desperately for answers. At the same time, I knew that the school had all kinds of rules about absenteeism and requirements for attendance laid down by the state that had to be obeyed. I knew trouble was coming if he did not attend school — I was frightened and stressed about the laws, which aggravated the stress of worrying about his declining health.
Funnily enough, while the law mandated attendance, the teachers at his school saw the same things that I did: a kid who was an excellent athlete and completely committed academically suddenly drop off the radar. And even when he turned up at school, the teachers could see that he was listless and losing weight alarmingly. I think the teachers generally felt that we didn’t fit into the mold of the typical dysfunctional family so they were all very supportive. It was my mother who planted the seed that Blake’s absences were all my fault. She would say: “Julia’s too broke to feed her son” or “Blake’s losing weight because Julia is starving him” or “Julia’s falling apart and Blake’s condition is the result.”
It was all incredibly painful to me. Not only was I unable to take care of my son but I was watching him waste away before my very eyes. And to add to the pain and uncertainty, my mother was piling on to undermine the mental and physical wellbeing not just of her daughter but also of her only grandson. It was baffling to me that anybody could be filled with such enmity, let alone my own mother.
I started calling some local friends for help. There was a core three girlfriends in the area that were very supportive and I am grateful to this day. There was also a Police Captain next door that was very supportive, I started looking up to him as a pseudo Uncle and I really admired his wife. But the well was being poisoned sufficiently by my mother that I could feel people looking at me at the school, the market and the gas station as if I had sprouted devil’s horns or had the mark of Cain on my forehead.
Inside my home, things were steadily getting worse. Sometimes when I would come into Blake’s room, his face was as white as the sheets that surrounded him and he would be staring at the ceiling as though the answer to his illness was etched in the wall in letters too small to read.
“What are you feeling today?” I would ask as I entered the room, my voice small and meek in case it was one of the bad days.
He would meet the words with a small head shake side to side, the only indication he could muster that it was not a day when he would be able to leave the room. Nearly half of the days around that time were greeted with this reaction, a sign that it was another day where whatever was inside him had won once more. I’d leave his room and let him fall back to sleep or to simply leave him be without me badgering him to better explain what was causing the pain.
I’d occasionally come in and read aloud from a book to him, sometimes he’d sit up and listen intently, asking questions and nodding along, but other times he’d fall back asleep before I’d reached the end of the page. We had wide-ranging discussions on philosophy, astronomy, math equations and physics. I read from my scientific books on mammals, herpetology, reptiles and birds. I tried to draw him into the world of the arts, sciences and nature. Blake read all the Harry Potter Books and he was intrigued with any books having to do with the Military.
The fluctuations are part of what made those years so difficult, the want for each day to be one where he could get out of bed, but the knowledge that most days we would not be so fortunate.
No matter what, I never gave up. I credit that to the toughness of my Irish heritage, my time well spent with the SpecOps guys who molded me from the age of 18 and seeing so many of my family enlisted in wars and government. I had always been crafty, I was known as the one who could pull something off, at the last moment, when all hope was lost. I was That Girl. I liked the reputation but this was a different kind of challenge.
In one way, this was just another mission I had to accomplish. But in another way, this was a frenzy, I was frantic. I was deranged with worry and my days and nights were filled with worry about Blake. Could I save him? What about money? How was I going to pay the mounting bills? What if the money ran out? I was torn in shreds.
My focus narrowed until I only really cared about Blake’s health and with that focus, I pushed myself past any of my previous limits, physically, emotionally and intellectually. I became absolutely determined in my mission to never stop, never quit, to get my son medical help and to get him healed. I told him every day: “This is temporary. This is not forever”.
The more obsessed I became, the more frustrating was the search for help and advice. In some respects I suppose I was the classic obsessive, going on and on to anyone who would listen about the travails of my beloved son. I went back again and again to my long-suffering family doctor who passed me on to everyone he could find in his Rolodex and I did my own research to find specialists who might have an answer. These visits were always a risk because it was easy to see that doctors who couldn’t diagnose a cure for Blake might just as easily blame me for something they were unable to understand. One such visit turned out just like at the MIND Institute at UC Davis. MIND (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cures of neurodevelopmental disorders. In theory, that should have been a perfect place for me to get some real answers but a neurologist was one of those who chose to blame me rather than to diagnose Blake’s illness and suggest a path to a cure.
As Blake was fading, so was I worn down by the battle and my apparent inability to find answers. I was becoming sicker and weaker and I would sleep when Blake slept. But then I would find another avenue of hope and would become re-energized and the adrenaline would take me to the next stage of the hunt.
He did have friends who would come over to visit on the rare good days, playing music or video games in the den. Two musician friends, Saul and Rick, would come over and play music with Blake on the front lawn. Rick had long flowing hair and Saul wore a fedora and big thick black glasses. My mother always disapproved of those two and yet I adored them and came to love them.
They managed to get him in the car for outings to a restaurant or even a drive and would bring him home when he said “I’m tired guys”. I trusted them implicitly. If they managed to get Blake to a party or to stay out late, I was happy for Blake. I wanted to see him out more, yet I knew it was a struggle for him. Rick and Saul drew him into their hearts and mind, with music, compassion and friendship and they have remained close to Blake to this day. Those two were so different from the jocks and other athletes that so depended on Blake for so many wins who never reached out and who were completely absent as his health declined. However, the school did send out letters, drawings and cards in a book from everyone in Blake’s class wishing him a swift recovery. Blake couldn’t read them as he was in too much emotional pain. I don’t think children of that age understand chronic illness and neither do their parents, unless they have direct experience. But Rick and Saul even drove Blake to Prom.
I was grateful that he had such people in his life that, like me, weren’t willing to let him give up on what little was left of his life. It would be Saul that would move with us for six months when Blake went off to college. It would be Saul that ran down the street in Ashland when Blake called home disoriented on a street corner after school and not knowing how to get back to the new home we had rented for him in his first year at college.
“Stay right there” Saul said and then rushed out the door to bring Blake home.
Those two boys were a lifesaver. Today, Saul is in The National Guard and Rick is in The Air Force.
But as Blake’s health continued its downward spiral, I decided that rather than fight the state and local education rules, I would be better off homeschooling him. The school had a program for students who were forced to spend much of their time in the hospital which allowed them to continue their studies and earning credits towards their diploma.
Blake was officially enrolled in a home hospital school program where I picked up the assignments weekly and he returned them when he could. Some extensions had to be granted but in general this worked much better than the struggling and failing to meet school attendance requirements. Though he wasn’t able to give those studies as much attention as he once had, it was something normal and a structure in his life that had largely disappeared. He still had to read textbooks and take quizzes on what he’d learned. Some days, I would see a sliver of my son coming back, the same kid who had once eagerly waited by the door for me to get him to school early.
My mother was continually interfering, trying to turn Blake against me and criticizing me directly for what she claimed were my failures as Blake’s mother. She would claim I was failing him as I was struggling to pay my bills or failing him because I hadn’t yet cured his illness which was, after all, my own fault in the first place. These attacks were both depressing and frustrating. I couldn’t believe that my own mother would attack me in this way and that she could be so completely unsympathetic to the struggles I was having. What I needed was a little love and support and what I got was enmity and attacks.
Much worse was to come. On the occasions that I would let her take him away for the week so I could work and get bills straightened out, he would come back in a totally different mood than when he had left. He seemed angry and upset with me, and at the time, I didn’t know why but later I came to realize that my mother had been poisoning Blake against me.
My mother then opened a different level of warfare on a number of fronts. She complained to the local police that I was harming my son and then she complained to Child Protective Services that I was harming my son who turned up at the house to question me.
It was the early morning when I heard the rapping on the door at my little farm house.
“We have a complaint against you,” a woman from the agency said to me as I answered the door. Her look was stern, she handed me a CPS card, but I could tell that she was expecting a disheveled mess at the door, not my put together hair and outfit. I was not the type of mother she was used to dealing with in these types of visits.
I was taken aback at what she had said, but welcomed her into our home, showing her anything she asked for and proving in the process that I was a fit mother and loved my son.
“Can I see a list of your medications,” the CPS worker asked.
“I don’t have a list but I can get you the bottles,” I replied. “And why do you need to see them?”
“You have been accused of doctor shopping and drug abuse which is just one of the 17 charges against you,” she said.
I knew that my mother had made these charges because she had driven down in a rage to Gus’s workplace and told him the exact same things as this CPS worker was saying to me. Gus had told her to leave his workplace, that I was a great mother and to leave me alone. My mother did the opposite.
The CPS worker started asking about my medications and I explained that we should segregate the bottles into 7 piles , as I had 4 different specialists and 3 surgeons. She looked at the first pile and asked what this specialist was and I answered Rheumatology. What does this medication do? I said one medication was a sulfasalazine, one was Methotrexate (a form of Chemo), one was still full- because it made my stomach bleed, so there was another med that helped to stop the bleeding and one was Zofran for nausea with the chemo. Each specialist were named, the bottles examined one by one. At the end, I was describing the medication to prevent blood clots and she asked me to stop.
“Please don’t go on,” she said apologetically. “I’ve seen enough. I am so sorry”.
She went through the other charges and talked about emails my mother and my father’s brother had sent her and said she would talk to the Sheriffs about stopping them from email harassment to her office about me. We parted friendly.
“I’m dropping these charges,” the woman said as she left, “but I’m not able to drop one because it’s a criminal charge.”
Those words hit hard. What kind of charges had my mother made up, and what one was severe enough that it could lead to prison time?
“It’s Munchausen by Proxy,” she said with a slight furrow in her eyebrows as she read the words from her sheet.
For those unfamiliar with the term, it is a mental disorder which causes caregivers to make up or cause illness or injury to the person they are caring for. It’s often seen in a caregiver such as a mother causing her child to remain ill. This form of abuse is rare, with about two of 100,000 children are said to be affected. But to be accused of such an atrocity was truly disturbing.
At the High School, there was one math teacher, Heidi, who had been tremendously compassionate towards Blake. She would often come around to the house to help Blake with his math lessons and she encouraged him to keep learning. Her young daughter painted a colorful picture of a horse which I framed and keep with me today. She encouraged Blake to keep learning. It was Heidi who told me that two detectives were asking questions about me at the school. I asked her if she had their names and numbers and I called the lead detective directly within 30 seconds of hanging up with Heidi and invited them out the next day.
Although I had been warned by the CPS that the charge of Munchausen by Proxy was still alive, I had not thought about it any further as it seemed so ridiculous and so I was stunned the next day when the detectives told me in my living room that that was what they were investigating. I was so surprised that I lost my balance and fell backwards onto a sculpture Blake and I had made.
Blake was forced by CPS for psychiatric tests to prove the damage my poor mothering had done. This was mandated by the Sheriffs in order to see if Blake had been abused and if they should file criminal charges against me. I drove Blake two hours North for each weekly psychiatric exam and waited at a café while he was interviewed. The tests showed the effect of his illness on his metal state in the transcripts that follow:
“At a glance, Blake appears to be a fairly normal young man. However, he does seem somewhat awkward in social situations, and he becomes anxious and irritable around others. He also reports feelings of anger and a sense of not knowing how to effectively manage his anger.”
Change in normal behavior.
“Blake denies a history of physical or sexual abuse. Blake reports having earned above average grades in school. He has been on an independent study program since December of 2005 due to his illness. Blake has thus far been a fairly well-behaved young man, functioning without signs of oppositionality or conduct disturbance.”
“On the Minnesota Multiphasic Personality Inventory — Adolescent Version (MMPI-A), Blake provided response to all 478 items. His approach to the inventory yielded a valid profile. His profile suggests that he is neither denying problems nor claiming an excessive number of unusual symptoms. However, there is a suggestion of an overly frank self-appraisal and that he may possibly be presenting a more negative picture than is warranted.”
“His overall profile suggests possible behavior problems, including family discord, school-adjustment problems, risk-taking behaviors, and/or conflict with authority figures. Interpersonally, his profile suggests that he enjoys social attention and prefers spending time with others rather than being alone. Thus, it is probably somewhat distressing to Blake that he spends a good deal of his time alone at home, isolated from his peers.”
Difficulty in social situations:
“On the whole, whereas he would ideally prefer to spend time with others, he is probably not all that comfortable with his peers at this time. Unfortunately, by restricting his level of social engagement, he is likely to foster an increasing pattern of isolation and personal disillusionment. Complicating matters is that he often experiences his social interactions in an emotionally painful manner and thus may have little motivation to return to such contexts. Reinforcing social withdrawal in Blake’s case will only make him worse.”
And how to make him better.
“This young man [needs] a consistent schedule of social activity that will ensure a predictable pattern of social involvement. He desperately needs to be around his age-mates. Laying around in his room does nothing for this young man’s sense of efficacy. In fact, his recent social isolation and dependency are likely only reinforcing his elevated anxiety and agitation, especially given his developmental stage in life.”
Though Blake remembers little from that time, the fatigue remained a constant. From his time at his grandmother’s, he recalls vague details like she helped him to get his driver’s license and GED, but the details that he recalls best are the pain and fatigue.
“I spent a lot of time thinking. I was tired, and I was constantly searching for a source of energy, a stimulant,” he says now, remembering the early years of the sickness.
He turned to anything with sugar to give him enough of a boost to get him out of bed: soda, energy drinks, you name it. The artificial energy was good for a short term fix, but by the end of the day he’d crash harder than if he’d resisted the drinks. And despite the sugar, the weight loss remained and continued, even with carbs.
While living with his grandmother, she and the rest of the family continued to convince him that nothing was wrong, and just like the doctors tried to tell him, that his illness was all in his head, a mental issue rather than a viral one. It was all part of the same propaganda that told him that I too was psychotic and needed help just as he did.
I was eventually investigated for 3 years, having to check in with the detectives weekly to give progress reports. At the end of those three long years, the investigation was dropped with no charges ever being filed. One more strike against my venomous mother.
Later that year, after countless more doctors visits, we got another diagnosis. This wasn’t the first time doctors had thought they identified the true cause of Blake’s pain, but looking back now I wish we would have realized the strides that were being made.
Bill, Blake’s MD, wrote: “Patient is in today with his mother. He has recently had consultation with Dr. Meyer, with whom I spoke on the telephone today. Dr. Meyer is also somewhat baffled by Blake’s presentation of profound lethargy, lasting several days, episodically occurring. He becomes so fatigued he is unable to rise from bed,” the entry read. “Blake is feeling reasonably well today but his mother has withdrawn him from sports and from academic involvement at the present until his symptoms are more clearly defined or his treatment is more clearly defined or a diagnosis may be made. We will consider endocrinologic screening, infectious disease screening pending these results.”
The notes from that winter went on to give some of the most important information of the time, but we didn’t fully appreciate its significance: “His consultation with Dr. Meyer had resulted in some further screening including Epstein-Barr screening which was positive for Epstein-Barr Capsid, this the only positive among a battery of tests that are now complete. Assessment: Chronic Fatigue Syndrome, Epstein-Barr Virus most likely cause.”
This was the first glimmer of light at the end of what had been a very long and dark tunnel but it is only in hindsight that I can see the value of that diagnosis. The reality then was that my doctor didn’t fully understand what CFS or Epstein Barr really were and simply advised that Blake continue to rest and he would eventually recover. But the reality for me is that no recovery seemed likely and, in fact, Blake continued to get worse.
The tests and the visits to different specialists seemed endless. Each would have a view that was eventually disproved by blood tests. On one memorable visit, the doctors at UC Davis Cardiology put Blake through an exercise stress test which, being Blake, he gave his all and passed only to take to his bed for the next 60 days with exhaustion.
What I found was that all the big hospitals and departments required far too many tests that were usually spread over weeks or months with the expectation that a sick patient was going to be able to make all of them, which was rarely the case. One time we drove all the way to the hospital seven hours away and then waited two hours only to be told that the doctor was on vacation and they had forgotten to reschedule the appointment. What started out as a hopeful trip, would become dreadful and hopeless. Time after time, there were no answers. And the more I wouldn’t stop looking for answers, the crazier I must have seemed to the outside world- those looking in and judging me.
My only focus was improving Blake’s condition and the rest was just the steps to get there.
Drawing blood, heart rate tests, scans, tests and more tests became part of the language of our lives, but even all of the prodding and poking did little ease my worries because there were never any concrete answers. With no answers, we continued to pour money into the apparently forlorn hope of getting any sort of information. Tens of thousands of dollars went to the cause, plus lost wages and time spent on nothing but fear and failure. And the more I worried, the more my mother tried to downplay the whole thing as an illness that was all in our heads, or just the result of not getting enough sleep.
“Oh, you let him be,” my mother would tell me. “He’s just fine, and he’d be better without you badgering him about how awful he looks.”
My mother had discounted my words my entire life, so her discounting Blake’s illness was shocking in a way but perhaps to be expected with her history. I tried very hard to include my mother in everything but she became so condescending and her tone so dismissive and judgmental that our relationship became almost impossible. And of course, the more my own mother questioned my judgment, the more I worried that perhaps I was actually failing my son and not doing what I thought was right for his health.
On one especially difficult day, on the ride home from another fruitless visit, Blake looked out the window as he finally spoke, asking me a question that let me see a glimpse of where his mind had traveled.
“Mom, am I going crazy?”
I waited a moment to reply, knowing his state was fragile and how it feels to not know where you stand even in your own mind and body.
“Crazy people don’t know they’re crazy, Blake,” I replied.
It was the first time he had laughed in months, and that sound was one that had become unfamiliar in our small family. The small chuckle alone was enough to give me hope that under that blank slate my son still existed.
Days of hope would come and go, a real conversation with Blake would set me on a high that lasted all week. Other times, when he wouldn’t remember the words I’d spoken just seconds before, I’d fall into a slump that lasted twice as long.
I could see the same despair in those around us, even those who were supposed to remain steadfast began to falter. I called my best friend, Maria, and asked her if she thought I had Munchausen by Proxy.
Honestly, I can’t answer that,” she replied, doubt and sadness in her voice. “I don’t know. I can’t see what you are talking about with Blake’s illness.”
That conversation summed up so much of the struggle for me. To so many CFS/CFIDS is both invisible and incomprehensible. This was perfectly illustrated when I took Blake to see my own rheumatologist to see if perhaps Blake was suffering from some form of arthritis. He ruled that out but later when the two detectives came to see him they asked him if the patient he had known for years (me) had Munchausen’s he replied:
“I honestly don’t know. I’ve examined Blake and can find absolutely nothing wrong with him.”
It is difficult to describe how hurtful the comments from Maria and my rheumatologist were at the time. Here was my best friend and a doctor who had treated me for years and who I like and admired. Yet both clearly doubted what I was saying to them and could see nothing wrong in my son and were even suggesting that I rather than Blake might be the one who was ill.
At the same time, my entire family which I had moved 800 miles to be closer to started to disown me. My aunts and uncles, whose ground they walked on I worshipped, became distant and my father’s brother launched an email terror campaign with my mother against me. They accused me of every possible abuse against Blake and the emails are so horrific, I cannot read them to this day. Family had been everything to me and I was losing it all.
Bill, Blake’s primary doctor was even beginning to lose hope, which made me even more frustrated. I hounded him to send Blake to another specialist, no matter the location, no matter the cost. A third generation doctor in a small town, Bill’s grandfather had operated on my great grandmother. He was poised, concerned and authentic. Plus, he willingly helped me get Blake to every specialist that might be of help.
Bill had gotten a call from the detectives and was made aware of the police report filed against me by my mother, we have this in Blake’s medical notes and to this day, my mother says she did not file the police report. To this day, my mother lies about this. The liar calling the devoted mother, a liar. It was surreal. Bill pulled me aside after Blake’s monthly check up and said:
“I don’t know of, nor have I ever heard of any patient that could have handled this situation better nor ever even survived this situation intact. You are strong.”
“My one question to you, Julia, is what did your mother do to you when you were young. I believe she abused you and is reliving some of that by being the accuser instead of the accused.”
I told Bill nothing and it would be years before I could admit what had happened to me as a child and it would first be pried out of me by a famous woman psychologist.
With Gus out of the picture, and me working so little, we had to learn to keep up with the bills and travel costs and medical fees that were piling up daily. To cope with the cost, I sold everything I could as fast as I could, and we started just scraping by with the very little we needed to survive. And when it came to priorities, my son was obviously at the top of the list. There was medical Insurance and I had to make sure it never ran out. We started running out of money and I borrowed against my farm.
My goals were to make sure he was fed, even if that meant me going hungry, and making sure he was warm enough, even if that meant turning off the heat to my half of the house or running a hose from the tack room out back to the house to bring in warm water.
On a few occasions, it even came to that length for me to get Blake a hot bath. I stretched a hose through the bathroom window, barely reaching the tub. The tack room had an electric water heater, making it the one place in the house where we could get warm water when we ran out of propane that fueled the water heater. And though I’d forgo the luxury for showers and dishes, getting Blake a warm bath was a must. It was a crazy situation because propane prices had gone up to nearly $5.00 per gallon in our area and there was a minimal re-fuel of 85% on the 300 gallon tank. Often, I didn’t have the money to pay for the fuel so if I had to switch to a hose from a secondary water heater, then so be it. It was a choice between getting Blake to a doctor with hope- or buying propane. I chose Hope.
The electricity was really the last of the amenities we had running, the propane was out, making cooking a difficulty, and even with the electricity, we had to be sparing. But on this ten degree, snowy day, I wasn’t willing to sacrifice a warm bath for my ailing son.
The warm water slowly ran its way through the hoses I’d connected through the window and to the tub, bubbling as the water trickled into the bath with steam still coming off of it. It was one of those moments that gave me a strange mix of pride and sadness. Pride that in this time of difficulty I was able to take care of my son and resourceful enough to make do with what we had, but sadness in the fact that this was all I could do to make him comfortable.
The cost cutting continued, and Blake learned to be financially savvy in that time. We both learned what it meant to cut any and all unnecessary luxuries from our daily routine. I began losing weight because we didn’t have enough food for the both of us. My mother noticed this and spread a rumor that I was doing drugs of some sort. I was losing weight from lack of calories and stress.
It meant all non essential items for me had to go. No getting the haircut, I wore men’s clothing left over in the house closets from my uncle or guests. I shopped at thrift stores. I didn’t buy any food that was perishable as frozen was cheaper. I started letting horse clients go as I couldn’t take care of Blake full time and run a horse business on the side. Some of my horse customers were my kindest supporters of all. They knew how much I had given them in the form of love for their injured and broken horses; they gave that love back to me in spades. Hearing their voice on the phone or receiving a great email- would cheer me up enormously.
The best of those friends was called Maggie, a vet by trade and, like me, a voracious reader. She passed away nearly 2 years ago and I still honor her gigantic scientific brain and her loving heart with fond memory. Maggie had bequeathed to me a horse named Peace which was ironic as she had broken the backs of three cowboys. She had engorged back ankles from roping accidents and she was ripped away from her foal the day she had been sent to me. When she arrived off the horse van, she was wide eyed and made it clear she was having a panic attack. She raced and paced the fence lines whinnying for her lost foal for weeks. She had a long back, was speckled grey, her gorgeous dapple grey color long gone with her age. She was a Jacki Bee Mare, which said something. But why the cantankerous nature? I never really loved mares. I took care of them, I honored them, but I didn’t spend much time on one in the saddle. Until Peace. She became my confidante and my partner. On the side of a cliff, caught in a wind and hail storm, through a narrow pass over a famous cliff, she got me there safely. Through a raging river when trying to cross after a flood to go after a drowning calf, she got me there. When Maria came up to ride the backcountry, Maria glowed on her Palomino, but Peace was my girl. I loved her so much that when it came time to put her down, I asked my cousin to help me and I did it myself. I took her to her favorite spot, our spot on the big Ranch, overlooking the Valley, and I put her down. My cousin asked if I wanted a ride home, I said no. I walked the 3 miles back to the farm house sobbing, my hands bloody, blood dripping down my face and hair. I called Patton, a neighbor, who was to become one of the best friends I’ve ever known. Tough gal, honest gal, loyal gal. Patton picked me up and got me home. I slept for 3 three days afterwards.
My other friendships went by the wayside. Social events were non existent. Movies, television, happiness, all gone. It was a very bleak time. Blake and I stopped getting each other presents and instead I would buy a single cupcake. My friend Denise showed up one Christmas bringing a load of propane for winter heat, hot water and cooking. She brought gifts and we ate an Elmer’s coffee cake on Christmas Day. We laughed and there was a brief glimpse of the magic we had all once known. Of all the big Christmas’s with the enormous piles of presents we were used to, Denise brought Christmas to an entirely new level. Friendship, kindness and giving to the needy became our new norm for the Holiday from then on out.
But when selling off the big items and saving money wasn’t enough to keep up with the mounting bills and expenses, I felt I was running out of options. I’d come home to a mailbox full of envelopes marked in ominous red lettering to notify me that what I was doing still wasn’t enough. On the one hand, the utilities would cut me off but on the other, people were often very kind; a neighbor would bring me an elk roast or a piece of the catch of the month and his wife would make a pie. In contrast to my own family, there was a lot of kindness from people that knew us before Blake’s illness happened and could not wrap their mind around any sort of rumor of abuse. I was picked as a secret Santa recipient one year and that was amazing. I’ve given back to that charity and many more every year since then. The tragedy turned me into a taker. I asked begged and pleaded for help. Some friends stopped calling me back but I paid everyone off in spades and now give as much as I possibly can to those in need.
My mother would help out occasionally with the bills, but taking help from her meant putting myself in the log, the dreaded record book that she would use from time to time as a record of how much I owed her or how much I had failed by in years past.
Inevitably, my Mother continued to push me away while simultaneously trying to reel Blake in.
“You’re not sick. Your mom is psychotic. She’s using you to get attention,” she would tell Blake.
Gus would pitch in occasionally out of sympathy for Blake, the boy he had helped raise.
Whit did what he could, too, providing rides to the doctor’s office from the airport on our doctors visits to San Diego. He had taken over the mortgage on the ranch, so Blake and I would have a place to return after the doctors’ visits in Southern California were through. I knew I would eventually have to sell the farm, but I put that thought aside for another four years.
Having at least some support from those around me helped to make the hard times less bleak. But even their generosity and loans were not enough to keep up with the constant medical bills but I knew that I would give up everything I had and everything I owned if that was the price to be paid for saving my son.
By now, Blake had deteriorated so far that he couldn’t even step into the shower by himself. I abandoned my intelligence work and any other source of potential income so that I was always available to my son. Even with me there, he faded further and further from the son I had known, and I watched him drop 60 pounds to just 130 lbs. on his tall 6’2” frame. I started to fear the worst.
No longer was there light in his eyes, just blank holes in his head. He no longer perked up at the thought of going skiing or out for a run as he had years before. He was being taken away from me piece by piece and I was doing everything I could to stop it, but nothing seemed to be the key. As his hopes faded, so did my own. He was only 19 years old at this point, and I was preparing to lose my son.
On hard days, I’d put Blake’s arm over my shoulder to load him into the car where he would sleep for nearly the entire drive home from long drives to yet another specialist or from just going to town. It was amazing to see how wiped out he would get just from getting dressed, getting into a car and being a passenger in a car for 20 miles, let alone 1000 miles. In the rare moments when he would open his eyes, he wouldn’t say a word, just stare at the passing landscape through California over the same roads he’d seen countless times before.
After a difficult time with homeschooling and the recommendations of doctors to return Blake to a setting where he could interact with other kids his own age, I returned Blake to his old high school. Though he returned to school in a charter program rather than the regular track, having him back on a regular schedule and around other students made all the difference in his demeanor and personality. Though his pain and fatigue still remained, he seemed to show improvement mentally. I noticed a bit of defiance towards me at that time. Blake was spending weekends at his grandmother’s as her house was easier to get to and from the charter school.
I later learned that the weekends Blake spent with my mother were just another time for her to poison the well that was my life. Like a shark in the water, she wouldn’t stop until she had torn away all of the little support I had.
I was trying my best but in her eyes, it was never enough. And when my son began to doubt that I was doing everything possible for him and I to continue living, it only made things more difficult and depressing.
His small jabs bit to the core, and I could hear her voice echoing in his blows.
“Why did you even have kids?”
“The bills are late again?”
“Are you even trying?”
The taunts were endless and from all directions, but I knew Blake wasn’t to blame for the anger. It was my mother’s words leaking into his vocabulary, tearing me down even from miles away.
When his resentment subsided, he would recede back into his empty shell, feeling no better than he had before and only becoming more tired from exerting the extra energy.
In May of Blake’s senior year, my mother finally convinced Blake to go and live with her, telling him I was an irresponsible and unfit mother.
I came home one evening and Blake was not home. There was no note. My mother had picked him up for a “party at her house”. I called around 7:30 pm to see if he wanted a ride home- she informed me that “he wasn’t coming home” and hung up on me. I called back and found out that about a dozen of my relatives were at my mother’s house to perform an intervention “to get Blake away from me”.
“Do I need to come and pick him up,” I asked over the phone. “Or are you going to bring him home?”
My mother shot back.
“He’s not ever coming back.”
She hung up the phone with a slam meant for dramatic effect and to cause a little more pain to the eardrums she had already once destroyed when I was a little girl.
Week by week she had convinced Blake that I was the reason for his illness and that my actions were keeping him sick. And after the relentless brainwashing, my beloved son fell into her trap.
“It’s just fatigue and could be all in your mind,” they told my ailing son. “You’re just depressed. Go out and get some exercise!”
I instinctively knew that exercise might kill Blake. Even if he could exercise, I knew it would do nothing to improve his condition. Just a few months before I watched as exercise took him to the ground, writhing in pain and vomiting blood as he struggled to return his heart beat to a normal pace. I was in total shock. I was in total pain. All my family on one side against me.
I cried very, very hard for days. I thought about suicide, but not for long, as I remained determined to help my son and I still believed I was the only person who truly knew him and understood what he had been going through. If circumstances had been different, I would have gathered my friends, marched up to her house and taken back my son and my life. But, she had taken care of that already by telling the police that I was a danger to her and to Blake.
I learned later that she had been going to church three times a week to tell a support group how awful I was and to ask them to pray for me. From this distance, it’s hard for me to believe that anyone could be so pathological and brutal against another human being, let alone against her own daughter. But I’ve since talked to others who were in my position with a loved one terribly sick, the struggle to find a diagnosis and the alienation from friends and family. I’ve learned that my story is not unique but in fact all too common as thousands struggle with an illness that is sadly too often misunderstood.
For me, the decision by my mother to seize control of my sick son was a terrible blow. I was confronted with a choice: fight her or let my son learn the lessons of life for himself. By now, I was consumed by a profound sense of isolation and despair. It was as if I had poured my all into trying — no fighting with every fiber in my being — to save my son and I had failed. Everyone in my family was against me, I was broke and had no reserves of money or emotion left to me. Reluctantly, sadly and with a heart filled with a deep and profoundly painful loneliness, I decided to leave Blake alone with my mother. I hoped against all rational thought that this foul and malevolent woman might perhaps bring some respite to my son’s troubled world.
I can see now that this struggle between my mother and me with Blake stuck in the middle had little to do with Blake’s welfare but everything to do with her need for control. Every day that Blake stayed with her was another demonstration that I was incapable and that she was in control. If she couldn’t handle bringing up a child, then she wanted to show very clearly that I couldn’t either. Whether or not Blake got healthy in this egotistical struggle was largely irrelevant.
It was with a mixture of sadness and rage that I watched her throw back in my face the contrast of my struggles of the last few years. She had the money to do Blake’s laundry, to buy him good food and have it cooked, to get him a tutor, to buy a full wardrobe of new clothes, a new computer and the promise of a new car. Just as important, she brought back into his life all the family members she had done so much to alienate. She also gifted him a year away at school, paying for the school dorms and a decent meal plan. But although Blake may not have understood, all this came at a price. She made sure I knew about every ‘generous gift’ and she faithfully recorded it in the ledger to throw back in my face at every conversation.
My case wasn’t helped when Blake began to show improvement in his condition. His grades picked up and he began gaining weight.
Though I knew this was just another fluctuation in his health and that it would only head back downhill in time, the rest of the family used his improvement as ammunition to show that I was the source of his deterioration. No matter how hard I explained or denied, my claims fell on deaf ears of those determined to show that Blake’s illness was mental rather than physical. It wasn’t what they said, it’s what they did not say. Nobody would talk to me. I would see my cousin in the local small market and she would turn her back to me, as if pretending I wasn’t there. I felt ashamed.
Blake stayed with my mom from May until September. He entered Junior College and lived at the dorms for the school year until the following June. Blake had graduated from charter school with good grades on the back of his improved health. My mother held a celebration for him at her house and I was invited. But the invitation didn’t come as a cause to celebrate with the family, rather to contrast my care with my mother’s.
Eager to see my son on one of the rare occasions I was allowed to, I sucked in my pride and made my way to my mother’s house for the party. Driving up the road, the parking spaces were filled with cars of the relatives who had long since stopped talking to me since my mother moved to town and convinced them of my crimes.
I found a spot and took a breath before making the trek to the house, looking myself in the mirror to remind me that this was to see Blake, the most important thing.
As I entered the room, the daggers began almost immediately. Every way I turned, people stared and whispered, scoffing if I so much as tried to greet them. Whit and I sat alone on one side and the entire family gathered their chairs together away from us. It was absolutely horrible. A few of the more forgiving relatives feigned interest and pretended to engage in conversation with me as we waited for the party to begin, but their stares said it all: I was an outcast and a horrible mother, the person who had hurt her own son and now had the guts to show my face.
Whit sat by my side the entire time, showing his support just as he had throughout my life. From shielding me from my mother’s abuse to helping me stay on my farm, Whit was always there.
Whit doesn’t like to talk negative, so we just hugged each other after the celebration.
I left the party more shattered than I had entered it, seeing the perceived damage the whole family thought I had caused. I sulked back to my farm, lights and gas still turned off from me trying to save money to pay for Blake’s medical bills.
As the sun went down over my small farm I began to wonder what had become of my life and that of my son. It wasn’t so long ago that we had begun to find a community in the small town of Hilt, with Blake finding a home in school and sports with his friends and I in the various community organizations and my long-forgotten family.
This became what I recall now as one of the lowest points in my life. I had lost my ability to protect and defend my son. Even my instincts to fight, which had taken me to risk my life in dealing with terrorists and drug dealers, began to weaken. I was worn down by the isolation, the criticism from those I love and the isolation from my son.
The summer brought no new answers in terms of a diagnosis either. As Blake seemed to be on the mend, the family thought they had solved the source of his illness which was me. In a final blow, my mother had Blake tested for PTSD and convinced the family that he had post traumatic stress disorder from living with me as his mother.
Despite the personal setbacks, I never doubted myself. I knew in the deepest fabric of my soul that I had fought the good fight for my son and that the fight was not over yet. I was certain that whatever food or material items my mother would provide, the underlying causes of my son’s illness — whatever they may be — had not gone away and any respite was only temporary. I was actually happy for Blake even though I only got to see him once. My mother brought him out to the farmhouse at Christmas for an hour and sat very close to him on the couch as he and I basically just stared at each other. It was a bizarre experience and I could feel my enmity towards my mother hardening into hatred.
Blake remained with my mother for that summer, getting PTSD treatment from his time growing up with me, a treatment that my mother thought would cure him for good. In the meantime, she also paid for him to take a summer math class through the local community college satellite campus. His improvement in school continued and he earned an A in the one class he took and he gradually gained more weight on his once-thin frame.
The crash finally came that fall when Blake left Hilt.
My mother made the decision that she would pay for Blake to attend the nearest Junior College in Red Bluff, California. It was an exciting opportunity for him to branch out, meet new people, learn and heal. Though I was keen on the idea of him furthering his education, the idea of him moving and living on his own before we had identified his ailment was a decision that scared me.
But I had no say in this decision which was between my mother and Blake. In fact if I were to say anything, I’m sure it would have just ended in a shouting match, with her accusing me of not wanting Blake’s condition to improve further.
So as he made the trip to Junior College and began the next chapter of his life, I lived through the few details I could glean from family members in passing conversation or if I saw a friend of his at the grocery store. I’d attempt not to seem eager or like I wasn’t sure where my son was, and I’d take the little bits of information to paint a picture of how I imagined he was doing. From the bits I learned, things weren’t going as well as they could be. He had started partying and partying a lot, but I wasn’t aware of just how bad the situation had become since he made the move to college.
In that first Fall term, Blake lost nearly all the weight he had worked so hard to gain over the summer months. He returned to the solemn and depressed kid that he had been for most the latter half of high school, his color fading and his lust for life once again gone. I kept an eye on his social media and then took him out to lunch. I was really concerned as that listless and wasting Blake had returned with a vengeance.
Where his health declined, so did his grades. That first term finished with a 1.87 GPA. The constant partying and failure to keep track of his health made the situation that much worse, especially because living with my mother he hadn’t been allowed much freedom to go out with friends.
He didn’t know how to manage his time or his alcohol consumption. She hadn’t allowed him the chance to learn to take care of himself, and now it was working against him as he tried to learn it all at once.
“Your first year at college, you’ve seen all the movies about college, like American Pie, you know it’s going to be crazy,” he explains today. “That’s what I did my first couple of years of college. Just party, party, party.”
On top of the struggles of a new place, he still hadn’t gained any answers about his condition. The past months had been spent in the dark as he thought his mental condition would improve the overall, because it’s what everyone had told him would be the cure. It wasn’t, and he was spiraling out of control without anyone to turn to. My mother had convinced Blake he had PTSD but he was starting to notice physical symptoms that had nothing to do with PTSD.
Even with my mother paying for tuition and his meal card, his dorm wasn’t enough to keep him well and people began to realize this was a much worse situation was than they once imagined. As Blake’s weight fell off and his diet fluctuated, I don’t know how he even kept himself upright. The good days and bad had been hard enough to manage when I was there to take care of him, and now being surrounded by other students just trying to learn the ropes must have been such a struggle.
I tried to warn the rest of my family that Blake wasn’t cured and that he needed a doctor or someone to talk to as he learned to navigate college, and once again I was accused of trying to give him what he didn’t need. I’d lost the allies I needed to convince him of his condition, and didn’t have a lifeline out in the college town where he was going to school.
Meanwhile, I had started to form a new life for myself. I dated a retired Air Force Colonel and for the first time in years actually took time out for myself. Although I respected my date, I realized I longed for my old aspirations. I missed my hobbies and I missed my work. I started putting out feelers for work after trying to convince myself that Blake would never return back to me or to doctors that could keep helping him.
I tried to distract myself from everything going on with my family and Blake, knowing they didn’t want to listen. It was the Fall and I continued trying to keep up my small farm. Having horses around was the way I kept myself sane, turning to them for comfort when humans couldn’t provide any. It was growing cold as autumn rolled in over the Northern California hills and each night I spent hours with the horses, grooming them, feeding them, cleaning up the tack room and planning the next steps of my life. I had plenty of paying customers and plenty of horses to love. I had my dogs, yet I still yearned for work. So I headed to an AFB in the western United States and met with a Contractor. It was agreed I would begin a new job and a new life in Germany, on a project that would take me to the action I missed and craved and far away from the loss of my son.
The end of Fall came and the air began to grow frigid as winter rolled in. I had spent nearly a year without talking to my mother which helped my sanity, but Blake and I hadn’t spoke in months either.
I was on my way home from my journey with my new employer. My flight had been delayed due to heavy rain in the Bay Area. I picked up my two Labradors at my friend’s house on my way back to my farm. I was heading home to pack up, perhaps get a house sitter and leave the country for a new but familiar job overseas. As I headed up Sacramento Canyon North, with spotty cell reception, my phone lit up at around 6 pm. I noticed it was Blake calling.
I was confused at why he was calling so late and what could possibly be wrong, but my instincts told me this was urgent. I knew school was out and I assumed naturally that he would return to his grandmother’s for the summer before heading to his second and final year at junior college.
As I hit the answer key I could hear the sound of rain in the background, Blake was outside even at this late hour.
“Hi, honey,” I said. “What is it?”
There was a pause before he answered my question, I could hear him breathing heavily and the sound of rain hitting his skin and the ground in the surrounding area. It was coming down hard and I could hear his voice shivering in the cold.
Finally he replied.
“Hi mom,” he said in a low and slow voice. “Can you come and get me?”
I asked him where he was and he explained that he was sitting in the rain under a pine tree with all his dorm belongings. I said I would be right there and sped up the canyon to get him. I loaded him and his gear into the rental car the company had provided me. He relaxed into the dogs licking his face. He was gaunt, his eyes sunken and he looked terrible.
“Mom, I am in trouble,” he said.
I insisted on taking Blake straight back to Bill his lifelong MD for a check up. Bill took one look at Blake, weighed him, shook his head and asked Blake to leave the room. As Bill stared at me, I wondered if I was in trouble.
“Julia, now we know, beyond a reasonable doubt, this is not you,” he said finally.
His words were lost on me. Not realizing he was talking about the criminal charges pending against me, his remark went over my head. All I cared about was that Blake was gravely ill again and this time he had asked for help and this time I was going to get it for him.
We had been to so many specialists and ended up in Bill’s office after 5 years of travelling visiting dozens of specialists and having endless blood tests and still no answers. Bill was so alarmed at Blake’s condition that he actually talked about Hospice care for my beloved son. He suggested that I might consider talking to Blake about his final Five Wishes and that I should prepare myself for the inevitable outcome.
I was being forced to confront the reality that Blake might actually be dying and I was about to orchestrate the final act of my son’s short life. Then there came a sliver of hope.
“I’ve reviewed all of Blake’s file and we’ve ruled out every possible disease,” said Bill. “Except I think Blake has Chronic Fatigue Syndrome and there is absolutely nothing you can do for it”.
“Chronic Fatigue Syndrome, what is THAT?” I replied.
I went home and started researching madly. I found that a Dr. Jose Montoya had published a few good articles and was doing a trial with an anti viral named Valcyte and having some success. But, it was a Dr. Peterson in Incline Village that was closer to our Ranch and he seemed to be having more success with a drug called Ampligen. I called Peterson’s office and got an assistant who was rude to me on the phone. But, I liked what Peterson was using and the results of this Ampligen drug seemed phenomenal by all online accounts. Could Blake get it and where?
I then looked up CFS specialists and found that John Hopkins in Washington, D.C. had an excellent program for CFS in Pediatrics. We submitted Blake’s paperwork and waited. I received a call back from a Doctor:
“We’ve reviewed Blake’s records, talked to his MD and we think we can help him,” said the doctor.
“But we don’t think he can make the trip back East, let alone be able to tolerate further travel for future visits. Your son is in really bad shape”.
I hung up, restarted my computer and searched for doctors on the west coast that were taking Patients now. I found two in southern California, one in Torrance and one in San Diego. I chose the San Diego doctor because he was a distinguished Navy medical doctor and he had done very interesting work on co-infections relating to CFS. I loaded Blake into the car along with the two Labradors and drove over 20 hours to San Diego. We had to overnight at a rest stop. I went to the naval doctor fully expecting a diagnosis and a treatment plan of Ampligen.
I was terrified for the future, anxious for what would happen to my son and even more disheartened at the thought of what I would do without him. We went to San Diego with absolutely no expectations and yet every expectation in the world. It was a conflicting journey as Blake and I both realized this might be (and probably would be) our last stop. Passing Coronado and the naval ships at sea, I began to have a glimmer of hope for this visit.
To me, Chronic Fatigue sounded like a sham disease. My son was so gravely ill, how could a fatigue syndrome be at the root of a young man who was dying? I quickly learned, the disease was not a sham, but the name was.
This is Julia Hugo Rachel. Next week, I’ll be telling you about Chronic Fatigue Syndrome, it’s various names and definitions and the steps to helping millions more Americans recognize an illness they never knew existed.