I teach about and work with individuals who have autism. I help people around the world via the Internet and also travel Internationally in order to be hands on as I teach and heal. Thus I am often exposed to exotic viruses. For example I hugged a Rhino (nothing to do with autism) and got a Rhino tick parasite that invaded my gallbladder and pancreas. I also got a cow parasite when I drank cow’s blood with the Maasai tribe in Africa (Not my fault. My mother always said, “Clean up your plate. Don’t complain. And eat what they give you!”). That parasite invaded my liver, lungs and brain. Most recently I was blessed with a mosquito virus that inflamed everything everywhere: brain and body. In each of these and other instances I have had to research my symptoms and then seek medical attention for the problem I have already diagnosed myself as having. This is because none of my doctors are well versed in foreign medicine (though that never stopped them from doing irrelevant tests at my expense). Besides, fact is, only I can connect the dots because only I know all the little Rhino hugging details of my life.
Thus, in the end I have to do the research, find the cause and sometimes even create my own cure. Since my only clues were my symptoms I used those. Fortunately symptom following in order to solve the problem is how I approach the puzzle of autism. Fortunately I am quite skilled at it.
This blog is about Chikungunya. It’s a disease. I got it from an insect born virus that is transmitted to humans by the bite of an infected Aedes mosquitoe. This particular mosquito, the one I squashed on my shoulder, was a native of Bangalore India. Perhaps he was trying to be hospitable, you know, saying hello. Unfortunately his welcoming kiss filled me with poison. Also unfortunately there is no actual test for the disease nor any medicine if you do have it. There is also no comprehensive list of all the symptoms I could expect to endure. When searching the Internet and Doctors brains for information all I was told is that ‘it has symptoms similar to dengue fever: CHIKV manifests itself with an acute febrile phase of the illness lasting only two to five days, followed by a prolonged athraligic disease that affects the joints of the extremities. The pain associated with CHIKV infection of the joints persists for weeks or months, or in some cases years.’
In the course of trying to help myself I came to understand that an enormous number of people are infected and subsequently affected each year by the bite of this miniscule little bug. Pre bite I was extremely healthy and strong enough to swing from a trapeze. Post bite I was immobilized. This virus was so insidious and devastating that neither I nor the other mom who was bitten could prevent ourselves from thinking we may be about to die. In fact, occasionally, we wished for it. For the longest time I didn’t even know what I had. Research brought to my awareness the fact that there is very little help or clear symptom reporting being made available to the general public of India or Australia (where the Aedes mosquitoes reside). No matter how hard I searched I could not find a road map for what to expect. So since blogging is an Internationally distributed medium I am writing it down.
In the hopes that I might ease the uninformed worries of the afflicted here it is … my story .. corroborated by the fact that two of us were bit at the same time.
I was working in India with a family whose child has autism complicated by seizures. I was there to get her talking, co-operating and reduce or eliminate her seizures. It was day five of a two-week outreach when her mom and I decided to go out for dinner. While eating in an outdoor restaurant we were a little bothered by mosquitoes so chose to cut the dinner short and head home. Besides, truth be told, these outreaches are intense for both the parents and I so we were tired. The next day I felt a some flu like symptoms so asked ‘mom’ if she wanted me to continue working with her child as I could be coming down with something contagious. She asked me to keep working. By noon my knees were hurting and at the end of the day I felt a fever coming on. As she drove me back to my hotel she mentioned that she thought she was getting a fever and that her knees were hurting. We were surprised to compare notes and discover that we felt the same exact symptoms. This symptom sameness was a coincidence that would remain for the next four months even after I left her country for my own.
I know these similarities were not the result of information sharing between us or even environmentally set up expectations. Because of our different time zones we barely communicated and whenever we did it was about her child not our health. True she couldn’t help but be informed by folklore as she was surrounded by countrymen who were familiar with the disorder. But I was not. In fact for the longest time I didn’t even know what I had. Still regardless of this lack of illness enhancing communication, regardless of our different genetic makeup, different diets, and totally different environments … this mom and I remained the same, symptom after symptom, for month after month. That simultaneous synchronicity despite our obvious differences is why I believe we have unique knowledge on what symptoms to expect when afflicted with Chikungunya.
That night I had a fever that oscillated between 104 and 106. My hands and feet curled up, swelled up and turned blue. I looked a little like an elephant. Not only due to the fat round blueness of my hands and feet but also because my nose began to swell and change color. In fact my newly created elephant trunk became so huge and the swelling spread so much that it changed my eyesight. Halfway through the night I realized everything had begun to blur. So I took off my glasses with my forearms. For the first time in fifteen years the world was crystal clear. If I wasn’t so weak it would have been fun to watch a little TV with these eyes but fortunately I didn’t have to feel bad about that because my hands were too bulbous to work the remote. My ears began to ring and the world began to spin – which made me vomit in the garbage can next to my bed. I was too weak to walk, too awake to sleep and too much in pain to move. I knew I was dehydrating but I couldn’t even hold a cup let alone open a bottle of water. My kidneys stopped working which was possibly a blessing since I couldn’t move well enough to get to the bathroom anyway.
I called to say I was too sick to come to work and discovered that the mom had been sick all night as well. They offered to take me to the Dr. but I was just too ill to get out of bed. Add to that the fact that I had seen news reports on all the special needs children that had been buried up to their necks in a standing position for the past ten hours because the lunar eclipse was expected to repair their damaged brains. Needless to say between that information and my delirious state I was a little dubious about seeking local medical attention. Besides swine flu was the panic problem of the moment and sick travelers were being grounded. I didn’t want to be stopped from going home by a doctor’s report. So instead of going to the doctor I asked them to tell me what he said. He suggested painkillers and sleeping pills. Fortunately I was equipped with ibuprofen.
It took three days for the fever symptoms to lighten. I wasn’t really equipped for self-medicating but I did find three caffeine pills in my purse. I took them along with six cokes and four coffees. I believe this is what got my kidneys and bowels functioning. Then on the third day I was able to do neurofeedback to lessen the brain fog, stop the vertigo and regain some energy. Thus I got myself back to working (slowly) with that sweet little girl for short half hour periods (as opposed to three) then offset my playing in the playroom at a piddling pace by teaching the family more about the brain and how it functions in autism and seizure disorder. I survived those last three days of work by eating only lemons, garlic pills, ginger root, coffee and Tylenol. I followed that healing prescription with a nightly two hours of neurofeedback.
On the forth day I grew a body wide heat rash. Then I covered myself in makeup and prepared to evade the swine flu border Nazis by loading myself with fever reducer. I headed for home.
Over the next twenty-four hours of flying time I tormented the people beside me as I scratched and jumped about restlessly: It felt like my entire body was being attacked by fire ants and chiggers and I could barely prevent myself from slapping these non-existent insects. This phase of my discomfort lessened after being home for two days then over the course of a few weeks disappeared completely. My skin began to peel off my elbows first, then my knees, then my hands, legs arms and eventually my feet (huge chunks that flew into the face of my most grossed out pedicurist). Throughout this entire period my feet and hands remained swollen and discolored though less and less so. I had zero energy in my wrists and fingers and could not open anything without using my (very expensively capped) teeth.
One night about two weeks after meeting that maddening mosquito I was awakened over and over throughout the night by someone with a sledge hammer smashing my arm, my other arm, my knee, my other knee, my neck, my thigh, my this, my that, my this, my that my …… night after night, day after day.
OK it only felt like someone with a sledgehammer but boy oh boy did it ever feel like it. I could barely walk and was literally moving my feet about an inch at a time. I could sit to pee but rather fell onto the toilet and then gave up n wiping as soon as the need arose. I basically sat still for three days before I was well enough to go to the Doctor. He tested me for many things and called to tell me that my inflammation markers were very high so ‘yes’ I was really in pain. REALLY! The next day the pain began to pore out of my body as quickly as it had come. After three hours of dissipation I was myself again, sort of. I still had all over body pain but it was bearable. My word retrieval was really challenged for about six months and my energy level was extremely low. The vertigo kept trying to return and I ran sporadic fevers. Fortunately my jobs mostly landed on the days when the pain was at its lowest so I was able to keep working and teaching by maintaining clarity through the use of daily neurofeedback. (I did have to cancel a film shoot but otherwise at least my illness blessed me with good timing.)
Now don’t go thinking I’ve told you everything. Pain, swelling, fever, nausea, peeling, vertigo, tinnitus, eyesight changes and stinging skin weren’t the extent of my symptoms. I also had little hard nodules under pads of my palms. The ones on the left hand left quicker than the right and eventually all I had left was a little sand like crystal under the skin on the bone of the right side (palm up) of the wrist of my right hand. Overall my whole right side was more affected than my left … my eyes, my ears, my dizziness, my hands, my fingers, ankles, wrists and toes all more swollen and painful on the right. My hair began to fall out in big clumps and the 10 pounds I dropped piled back on bringing another ten with it. On the upside my body began using its glucose more efficiently and I was able to go off my ten yearlong diabetes diet with no negative results to my insulin levels. The arthritis attacks cycled every week for three days of unbearable pain and four days of bearable pain. And every time it cycled it lessened ever so slightly in intensity.
I returned to India to work. The little girl was doing and responding positively to the neurofeedback. As the mom said “We are over the moon with happiness she talks so much!” Then we compared notes on the chikungunya. It was amazing to see that our symptoms had been exactly the same, everything from the timing of our attacks to the order of appearance in our symptoms. Her right side was also more affected than her left. It was as if there was an unchangeable order of operations for the course of the illness. She was early thirties I early fifties she was of Indian decent I a Heinz 57 model and still though we were different we were the same. Heck we even had the same painless sand crystal in our right wrist for the exact same length of time. We compared notes while handfuls of hair continued to fall from our heads.
The only place wherein we differed was that, though we had both been struck by a devastating malaise, I had recognized this unmotivated state filled with sadness as illness. I treated the problem with neurofeedback. She had simply bought in to the emotions and thought her life was the issue. So in this way her journey was tougher than mine. In fact the way we treated the disorder was the only thing that separated us. I used my tools to help these symptoms and thus my mental functioning while she fell deeper and deeper into depression, dizziness and pain.
I treated her emotional symptoms till we were both laughing at how similar to pregnant women we were when trying to get out of a chair.
At present (four months after being bit) I still have wrist and ankle pain and the severity has begun to move from my right side to my left. All the lymph lumps are gone and I only need to do brain treatments about once a week to keep the malaise and dizziness at bay. (Though if it moves into my left temporal lobe my problem of word retrieval could progress into blithering idiot speech.) I can finally open a bottle without using my teeth and have begun to alternate feet when descending the stairs most mornings. I still can’t hold my own weight with my arms but I can lift my 8 year-old grandson as long as my back is supported by the wall. So I am improving quite quickly. And as I improve I am able to help myself with anti-inflammatory foods and exercises, followed by brain therapy and ibuprofen. But that is because I figured it out myself not because the information was available.
At present the vertigo almost comes but doesn’t quite hit and my hair is still falling out. My right temple still swells and when that happens my head aches my memory goes my mood dumps and my ears ring. My left index finger is unusable and my wrists kill, my ankles hurt. My wrists and ankles also unpredictably lose their strength. And this disease might be one of the best things that ever happened to me.
My low functioning autistic man-child Dar has always had periods wherein being asked to perform or do things is just too much for him. True, since employing the combination of neurofeedback and removal from school, Dar has improved dramatically: he is happy. He now talks and contributes and is a fun guy to have around. Still, sometimes he descends the stairs with a straight back sometimes he has to bob his way down. Now, I have long known that inflammation is an issue with autism but it wasn’t till I had to walk like my son that I came to understand just how much I am asking of him when I ask him to change things. Clearly if he could walk upright everyday he would.
The blessing I received from this experience was empathy and understanding. His.
Dar, it appears, is often dealing with arthritic swelling and brain fog. I think that’s why he seemed to understand my pain. He showed a side to himself I have never before known existed. He slept on the floor beside my bed in case I cried out. He helped me to the bathroom, helped me sit on the toilet, helped me put my cloths on, helped me get out of the bath. He was more concerned and user friendly than any other member of my family (And that’s a lot of competition because my family is awesome.). I have such a clear memory of us solving problems together like him turning the crank on the can opener while I squeezed the handles. Together we managed to cook, open containers and make it down the stairs. He was the most capable one in the house for the first time in his life and I understand him now in a way and at a level that I never could before.
So thank you Mr. Mosquito. You gifted me with a beautiful memory. My oversized lumbersome autistic man-son helping me get through my days like the gentle giant of love he has so beautifully grown into being. He helped. That was a desperate dream of mine when he was young: to see the day when if I were sad or ill or hurt he would care enough to help. Apparently dreams come true.