KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I am not a scientist and I do not play one on TV, but I embrace science with both its answers and its potential (and sometimes actual) limitations. I am writing this particular piece for a support group format – I will not be footnoting or using jargon above my pay grade or education. I’m talking about my experience, and I will ask here for some level of civility in comments.
There is a great love of science on DailyKos, and it is a defining and integral component of who we are collectively. In general, I love that. I love that a diary with photo of a polar bear floating on a small patch of ice would likely have tags from nearly all of us which include ‘global warming’ and ‘fossil fuels.’
Science has quite clearly and magnificently made my life possible. It’s unclear whether my mitral valve prolapsed was due to rheumatic fever as a toddler or whether it is congenital. I appear to have polycystic kidney disease (although we have no known family history), and if memory serves, about a third of PKD patients have serious mitral issues. But having had four replacements of that valve, two of them emergent surgeries, I am fully and completely aware of the debt I owe science for my life, and I am in awe of that gift.
Science = Power, the power to understand, to grow, and to change. Science is the very stuff of life. Science is undeniably reliable… right up to the point of paradigm shift when society discovers that in fact the earth has more dimensions than two. One need not be a Hegelian devotee to observe thesis transformed, spawning synthesis through negation of what we have known to be truth.
In our love of science on this site, how is it that we armchair Darwinians sometimes forget how integral evolution is to science? Today’s anecdote is quite literally the inspiration for tomorrow’s double-blind study which will become peer-reviewed and published at some point in the next decade.
It’s important to me that we do not forget this – that anecdotes do not explain things on their own, but they DO have an important place in scientific theory as the font of inspiration and discovery. Scientific breakthroughs all begin with an anecdote.
Two years ago this month, I awoke in the middle of the night and could not return to sleep. That May was the first Lyme Disease Awareness series here. I went in search of my Kos friends and saw a compelling diary on the rec list with HuffPo in the title and I opened it. I was entirely unprepared to see that this piece – which ended up staying on the list for about two days – this piece was only tangentially about science on HuffPo, what it was, was a scathing indictment of something I had published the previous day about Lyme - the point of it was that I had blasphemed 'science.' I had written about the politics of Lyme disease – a bacterial infection I had just learned I had after five years of disability. I had seen two dozen doctors before one finally recognized classic signs of Lyme in my cognitive dysfunction and issues with my central nervous system.
Three or four of us had published a couple handfuls of diaries that month, and this one I had just written had apparently been rescued after I had gone to sleep, and it had had its own short run on the rec list. That brief highlighting had triggered the response diary which stayed on the list through my birthday. It was a cold start to my new year. After a half a decade of extreme, debilitating illness which doctors had repeatedly told me was all in my head, I learned that I had a bacterial infection. CDC discussion of epidemiological reporting of this disease indicates that they believe this infection is under-reported and is likely 6 to 12 times more prevalent than tests indicate. This is an informal diary, and I am not going to pull up the most recent published results, but they were approaching 30,000 new infections annually, so do your own math on that. There’s a lot of this shit going around. Apparently, very few of us ever see the distinct rash which is a known indicator of this infection.
I am purposefully not linking the diaries I mentioned above – they are history and they are not the point exactly. The point for me is this: I am not a scientist and I do not pretend to be. But not being a scientist does not mean that my observations and experiences of my physical, cognitive and mental being are not legitimate.
I had a bacterial infection for at least five years which wreaked such extreme havoc in my life that I was no longer able to work.
Damn, now I must explain that this is not just lack of moral fiber which takes me out of the workplace. I have a history of pulling myself back from extraordinary physical crisis and have had the fortitude to overcome congestive heart failure (due to insufficient anticoagulation during pregnancy, thank you very much A***a insurance for denying what my doctor’s orders for the pregnancy) having formed centimeter thick clots over each side of my mechanical heart valve. CHF led to ventricular fibrillation which was resolved by an emergency redo valvuloplasty (my fourth valve surgery). Another time, internal hemorrhaging led to abdominal compartment syndrome and respiratory arrest. My medical records indicate that trauma surgery released roughly three liters of leaked blood and that subsequently I had several heart attacks, apparently from too little fluid left in my circulatory system.
I’ve been through a lot and recovered from it. I know how to set mind and body in motion to get from immobilized to back in the world. I am not proud to say that my greatest accomplishments in life have been just staying alive, but that’s been reality for me. And living with Lyme disease has been every bit as debilitating as the worst I have gone through from other etiologies science regards as substantial.
I understand that my life is merely a series of anecdotes as far as science is concerned, but that does not make what I have been through any less real or substantial. We have imaged white matter disease and encephalopathy going on in my brain, stuff that really ought not to show up in someone in her late 30s when that was found. But dots did not get connected. My cognitive decline and seizures and falling and neuropathy and dysautonomia were not considered as connected. I was told I was depressed. I should just get over it. My near constant dizziness was apparently seen as an indicator of moral failure.
If one looks to the medical literature, all of these things have been found and documented in people who have a particular bacterial infection which I have. I WAS depressed, but it was secondary to an infection which crosses the blood/brain barrier. According to the CDC, it’s an infection which is more than a little common, so it’s extremely confusing to me that having common symptoms of a common disease did not lead to my being tested for that disease for five years.
I am extremely fortunate. My earlier cardiac debacle led to my receiving Social Security Disability which comes with access to Medicare when you serve sufficient time. It actually wasn’t the nearly dying repeatedly cardiac thang which got me covered, it was the cognitive interference which likely arose from stroke-like events during surgery or physical crisis leading up to them. We know there were stretches of anoxia, for instance. So in spite of my having lost my ability to work and my health insurance from the workforce, I had regular, continued medical care through Medicare, and I was seen at a nationally respected medical center which U.S. News apparently deemed ‘Best in the West’ at some point because it was written on all of the elevator doors.
“The best” doctors were telling me I wasn’t sick, but the fact was that I had a very common bacterial infection for which they never checked. That same science which had saved my life repeatedly let me down in this instance, and did so with a flourish, telling me I was imagining things and refusing to take responsibility for my health and healing.
Would you agree that if all which is knowable were already known this minute, life would be quite boring? It is our quest for new knowledge and new understandings which keep us vibrant. Science is alive and growing and there is more to be understood about the world both inside and outside of us. I promise you that more will come to light about Lyme. I mean that about the long-term future. In the short-term future, it’s possible that a person reading the Lyme Disease Awareness series this month will come away with a tidbit of information which may seem interesting or useful.
I am only partially responsible for this result, but it is a point of pride for me that three readers of the past Lyme awareness series recognized their own symptoms in what was written and were tested for Lyme and found positive. That’s a mark of a real community: people here learn from one another and help each other along their paths. I’ve been greatly educated and blessed by fellow Kossacks, and I do my utmost to pay that forward.
I’ve written this to ask the indulgence of the Daily Kos community. Today starts Lyme Disease Awareness month, and I’d like you to pay attention, please, because there are many who claim we are living through an as yet unrecognized epidemic. I ask that you take a look at our offerings and that you indulge us by bringing an open mind – at some point, a paradigm shift will be noted as the science of Lyme is better understood. We assure you that the science about this shifty corkscrew of a bug (a cousin to syphilis) is not yet definitive: We know that both from our experience of living with these critters in us and from the published science.
The series of diaries for this year starts tomorrow with one by Stranded Wind. Please join us.
Happy Lyme Disease Awareness Month, Damnit :-)