Tuesday, May 18, 2010

I Swear, It's Nothing Personal!

"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, 



  1. lol
    can i have your e-mail or something? is there any doctor prescribing the drug already? thx

  2. You should join a couple of the other Forums like http://cfsknowledgecenter.ning.com/ and http://www.forums.aboutmecfs.org/content.php so that you get a broad-range of info about the disease and treatments. You can email me at either one of those. There are three doctors in the USA that have Ampligen currently.

  3. Kelvin

    This is your friend RS and you were right it got worse and my beautiful little bride was right i was a son of a b----. Not just a regular one a stupid one a big stupid dummy that got my litte feelings hurt by the woman i idolize because she did not feel like making sure i was having my feelings taken care of as any good wife would do while shefights daily for her sanity against this hellish disease.. How selfish could i have been to be concerned that my little bride swore at me vs to try to make it better for her to just make it from day to day. Yep i even went as far as to call Gwen( your wonderful Nurse)and cry on her shoulder tht all 125 pounds of my bride hurt my 235 pounds feelings. Kelvin i have lived thrua war and fought in Viet Nam with the First Marine Division. I always thought of my self as a pretty darn tough person having survived that hell for almost a year.
    The jungles rice pattys and the NVA could always find a way to mess up your day by at least shooting at you. I was wounded twice so they did more thanshoot at me. However my point is that i was more concerned with my little bride cussing a little bit or hurting my feelings vs understanding that this little gal is literally fighting herself for her survival. She is in so much pain and suffers so much from this disease and this treatment that i need to understand how tough she is having it vs how tough i am having it., What a big wuss i have turned out to be to be more concerned with myself that in my little bride and her daily struggle with CFIDS and Ampligen.
    Without peoplelike you sharing your trials and feelings on your blog Big idiots like mewould go on feeling sorry because we are lonesome without our bride there to talk to us meanwhile they are fighting the pain and anguish of making it from minute to minute in unbearabe pain and their body on fire fighting this horrible disease. After your wake up call and challenge to me today i decided to get educated on what is going on with this little bride of mine;. The love of my life that was cruely taken from me 3 years in to our marriage by this damned disease. It makes me sad to think of it and to realize i have been more stupid than smart adn more of a problem that a help. I am getting my crap raked into a pile and i am gonna be her helper vs her critic. I am gonna let her rant and rave just to get it out instead of stuffing it because she does not want to hurt my feelings.. How stupid could i have been not to realize what a battle this little girl has been fighting all alone because i did not understand.. Well i understand now and am gonna know allot more before this day ends. Thanks for the wake up call myfriend. It means allot. I know my bride will be telling you about this new guy she is living with. Cause although i love her with all my heart adn always have sometimes love is not enough without understanding and education in to exactly what she is going through. Thanks toyour blogs i now understand. I thank you so very much.Now let me go and change out the ice packs It is about that time again. God Bless you and once again thanks for the education. I will be a better husband because of it.