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I Swear, It's Nothing Personal!

Blog entry posted by Kelvin Lord, May 18, 2010.

[​IMG]"My mild-mannered, sweet, school-teacher wife just lit into me with some language that would make a sailor blush!" R.S. said, shaking his head in dismay. He was referring to his wife Leona, a fellow patient here at the clinic getting Ampligen, and he was beside himself, still stinging from the string of expletives she had just dispatched his way.

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,

Kelvin
  1. anncavan
    Fantastic!
  2. sandgroper
    well I just spotted classic cfs mistake - meant erupt not abrupt
  3. sandgroper
    as i live alone I find myself letting out some of these choice words since I read your post...they mostly rumble around in my head as I have been left to suffer in silence a lot of the time.....it gets kind of rackety in my brain....like a volcano about to abrupt..so a few times I have let the words come out and hope the neighbours are not passing when this happens......and if I have the energy I whack the couch
  4. Cheryl Benson
    excellent K,, I get notifications from another site and wasn't up to posting at the time. Swearing is part of my vocabulary sometimes, depending the company. For many it is part of their vocabulary all the time. When someone is close to you and swears at you and not about something else, makes a big difference for most.

    When I first got brain damaged with ME my brain and spine and CNS were drastically affected right from the start and just worsened, or 2nd perhaps after getting ME, brain/body damage, I couldn't stop saying one word over and over again for months, at that time it was the "F" word, I had no control. It still happens occasssionly if my CNS and brain have been pushed too far, I will start repeating the same word, last one was 'pages", this happens just from doing holoysnc meditation, which I can;t always do for reasons stated, I often wonder if it makes me worse, although I have had improvement in other areas, I just don't use or stop when my CNS is too high and sensory overload.

    I would think the emotional rollar coaster would be quite steep on this, and grateful you have people and each other to talk it out with. I am very grateful to be following your journey even though I can not always respond.

    You mentioned that you had to be OFF ALL MEDICATIONS, is that without exceptions? I have dystonia as well several types that are quite severe and movement disorders and I have to be on medications, sadly, all caused from prior medications. so the world turns.

    let me know, please. I have wanted to get Amplegin since he 1990's but my doctors weren't interested and also the funds. I still am interested although I don't know that it's a cureall, it varies person to person the results. I have been following it for many years, and used to belong to a yahoo group that were in test trials (not me) with name scovered, many years ago.

    may send a reminder message, I meant to some time back.

    Namaste Cheryl
  5. Cort
    Everybody who takes Ampligen should read this. Everyone non-CFS patient wants to learn about CFS should as well. Well done!
  6. Victoria
    That letter was an absolute "gem", Kelvin.
    And a testimony to telling it "like it is".
    Brilliant!
  7. Resting
    Thank you for spelling out that this is a neurological disease by ME definition. Something that people forget, partly because those who don't exhibit any neuro signs probably have some other disease. Thanks again!!
  8. Misfit Toy
    Love it. With ampligen or without it, that is exactly what happens. As always, you are such a good writer. Thank you Kelvin.
  9. oerganix
    I swear, I wish I would have had your letter to give to some of my family and friends in the past...or that I had written it myself.

    Thanks for sharing your trip with us and best wishes.