I had met R.S. briefly a few weeks prior, when he and Leona had first arrived at the clinic to start her on the Ampligen protocol. She was a petite, lovely woman, and obviously sick, but she still made an effort to be cordial. Looking up at the giant of a man with a straw hat and an unlit cigar hanging from his mouth, Leona smiled at him and introduced me. "This is my husband, Robert" she said, "but most people just call him R.S. That's short for "rock solid" because that's what he is in my life." I could tell how much she loved him, and it was clear that he idolized her.
I remember thinking to myself, "I wonder if he's ready for what's coming."
"Listen, R.S." I said, "if you have any questions about this protocol, or the side effects, feel free to call me. My wife could give you some tips as well," I said, handing him my card and phone number. "Because there are side-effects!"
It was about three weeks later, to the day, that R.S. took me up on my offer, and connected with me by phone. "Man, I need some help or advice or something." R.S. said. "This woman is pushing me to the edge of my rope. I don't know if I can take it much more!"
"What's going on, R.S.?" I inquired.
"I've been married to Leona for over 2 decades" he said, "and she's never said more than three cross words to me in her life. But ever since she started this Ampligen treatment, she's been cursing me like a drunken sailor. I mean, she's hit me with some profanities that you wouldn't hear even on a construction site. And I've worked in construction, so I know. I mean, it's like she's a different person! Would you believe last night, after very gently and quietly going out to the patio, Leona actually screamed at me to "stop slamming that "f----ing" door!?"
"Yes, I can believe it, R.S." I said, "for two reasons. First, in order to start Ampligen, Leona had to go "off" all her other drugs - medicines and antivirals that were getting her through. Second, the Ampligen she's receiving now is finding and attacking the disease, and it is stirring things up everywhere in Leona's body, including her brain, and that includes her nervous system, and the parts of her brain that controls and filters speech."
"You mean I've traveled over 1000 miles," R.S. continued, " to come to a clinic to get my wife better, and the immediate result of this "miracle drug" is that I get to hear what a 'son of a bitch' I am by my so-called sweet, loving wife every night?"
"Well," I replied cautiously, "at least for a little while, R.S. But don't take it personally!"
I went on. "In reality, what's happening to your wife happens to most of us who start this immunomodulating drug called Ampligen, or to anyone who has had this virus in their systems for a while and starts treating it. The same thing happened to me - and until my wife understood the pathology, she was as perplexed by my swearing as you are about Leona's. In fact, I continued, "my wife could tell you about the night I screamed at her to "kindly stop banging the f....ing door!"
What I then shared with R.S. helped him to understand the situation a lot better, so he could understand what Leona was going through a lot more. Thankfully, some other patients and doctors had shared this with me, and I ended up writing it as a "letter" to loved ones so that they too could understand that we are not just "cursing up a blue streak" because we lack self-control. Here's what I wrote:
Dear loved one,
Perhaps you have heard things come out of my mouth that sound harsh to you. Perhaps my attitude has sounded impatient, or my requests have sounded demanding. You may have even been one those close to me who has heard me use profanity or off-color words that normally even I would blush at.
Please understand, I have not gone over to the "dark side." I am battling a neurological disease which has infected or invaded my cerebral spinal fluid. This not only causes me great discomfort, it also causes great changes in my mental circuitry. Myalgic Encephalomyelitis by definition in part means "pain and swelling in the brain lining," and the viruses that it has stirred up mess with parts of my brain in a significant way, not the least of which is my speech center.
Yes, I have a problem with my mouth right now...but it's because I have a problem in my brain. According to the Canadian Case Definition Guide of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, MRI studies confirm that we patients use more areas of the brain to process auditory activities, which means small noises often seem extremely loud to us, and small irritants can feel extremely, well, irritating. What's more, in that process we often can suffer cognitive fatigue, which then affects our verbal processing.
Speech comes from the left brain normally, but when fatigued or worn out, our brains can switch to the right hemisphere, triggering our Amygdala, which is the key to emotions. This then causes our heart to speed up, our eyes to dilate, and other survival mechanisms to kick in. When our hearts accelerate, our sympathetic nervous system kicks in, releasing adrenaline or epinephrine into our bloodstreams. In short, sometimes our bodies put us in "fight flight" mode, ready for war, prepared to act like a warrior.
And because we lack the cognitive energy to speak at those times from our left-brain, we shift to right brain verbal communication, which of course, sounds a lot more like a soldier or a football player, than a school teacher.
You may have heard of this happening to women in labor, where out of the blue they will curse during the most painful, exhaustive moments of giving birth. No husband in those moments takes those words seriously, or personally - so I would ask that in a similar fashion, you not take mine seriously, or personally either.
I am, in a very real sense, in labor here. I am in labor everyday to try beat back the sickness, to beat the viruses and diseases that have invaded my body, without losing my sanity or my hope. If on occasion, the cascading of pain symptoms or the natural defense mechanisms of my brain and central nervous system push me into a warrior mode, and you see my eyes dilate, or hear invectives come from my mouth that seem over the top, please understand, I am really not that upset with you. Inside my head though, it is very painful, and very noisy.
So please, don't take this personally.
And on your way out, please, just be sure you "don't slam that @#$#%&& door!"
With love and appreciation,