So Long, Farewell, Auf Weidersehen, Good-bye… to My Support Group

Okay, this is a rant. This rant is so long and complicated, with so many connections to other topics, that I have considered that I should perhaps launch another blog just to deal with it. Or maybe create an online course for people with complex autoimmune diseases. Something. Because I finally have snapped for sure.

It happened while I was attending my monthly Scleroderma Support group in July. I go to these meetings because I need to talk to people about my illness, become educated about treatments and coping strategies, and to get, you know, support! I want to flock with my peeps!! Usually in these meetings there are introductions, a little sharing, nice snacks, and a presentation by a guest speaker.

This is the problem. The speakers who have been coming are often involved in alternative treatment strategies. As in alternative medicine. As in flat out pseudoscience masquerading as legitimate methods of treatment for our complex health conditions.  These speakers have been trained in their “method” and faithfully parrot back what they were told in their training. They have little actual knowledge of human physiology, biology, disease, or science. They are connected to a product or system that they want to sell to us to help us “stay healthy”. They especially tell us that they can help us have “healthy” immune systems and/or take away our pain. Since I am in pain because my immune system is misbehaving it’s hard to not find their messages appealing.

Except… I was a biology teacher. I used to work in a research lab. I know science as a logical process with rules, and this information is so outrageous it causes me to wiggle around in my chair, bite my tongue, and often whip out my cell phone to fact check.

Me: Google, please tell me if Leaky Gut is a real thing?

Google: Are you crazy? Of course not.

Me: That’s what I thought…

But evidently I absolutely, positively need to take this essential oil to protect me from leaky gut. Or the toxins will leak out though the holes in my intestines. This is the cause of many complex illnesses. Research? We don’t need no stinking research. We have testimonials!!

Compression Points on Foot
This pressure point chart was so outrageous I needed to put down the knitting to take a picture!

How about the day I learned that I need to massage my hands and feet at specific pressure points to clean the toxins out of my liver, pancreas and other parts of my body? Really. I was informed that the problem is that the cells of my body get dehydrated, will form tough protective barriers, and the fascia then can’t move fluids throughout the body. This was such a garbled version of reality it was practically science salad.

Me: Google, please tell me exactly what fascia is.

Google: Sure. Fascia is the thin, tough barrier around muscles and organs. It is part of your connective system and made of collagen.

Me: Google, just to be sure, it doesn’t have anything to do with fluid transport?

Google. No, dumb ass. That would be the lymph system.

Me: Google, that’s what I thought. No need to cop an attitude with me, you wouldn’t believe what I’m dealing with here.

As if all this fact checking wasn’t exhausting enough, there is also a hint of “anti-science” in the room. Several other patients have become convinced that we need to stop taking our meds as they have unacceptable side effects. It is better, they argue, to control our disease with diet, essential oils and supplements. OMG! It isn’t possible to google fast enough to keep up with this stuff!

Me: Google, what is this alkaline diet all about?

Me: Google, is dairy inflammatory?

Me: Google, do I need to take massive doses of probiotics every day, or can I just eat yogurt? This speaker is telling me I have to buy their product since I can’t eat dairy anymore…

Me: Google, how quickly do bacteria divide? Every 20 minutes? So I don’t need a massive dose?

Me: Google, is there any research showing a positive benefit of essential oils in systemic sclerosis?

Google: Stop! I have smoke coming out of my ears! Let me direct you to this nice List of Topics Characterized as Pseudoscience. There. You’re welcome.

Lunch
Yep. This is my lunch. See the dairy? That yogurt has 8 live cultures in it and I am not giving it up!!

While loading up on gluten free snacks at the break I finally snapped and asked the group facilitator if she thought it would be appropriate to let people advocate going off their meds and using essential oils to treat their conditions if this was a cancer support group?

“Well, no…”, she replied. “But that’s cancer.”

I just looked back at her until I saw something click in her brain, and then I left. I’m done.

Since then I have been fussing around about why this is happening. I understand that this is a tough disease (in more than one way), but how awful it is that there is so much misinformation out there that people don’t know what is accurate, and what isn’t. Desperate people will clutch at anything that gives them hope. Sometimes these things are based in sound logic, reason and science (stem cell transplants), and sometimes they are not (amber beads for pain relief). Obviously people need to know more about the nature of science, basic physiology, immunology, cell biology, and how the medications prescribed by their doctors work. They need to know their Star Trek!!

Star Trek Meme
A no-win scenario, the Kobayashi Maru test was designed to be a test of character. 

That’s right. Star Trek II: The Wrath of Kahn is what I needed to put this into perspective.  So many movie quotes, so many posts.

So, I feel a lot better after finishing up my rant, but I still think that I may need to launch a mini-series of posts relating to this. I mean, there are all those pseudoscience cures to debunk. All that biology to share. All those Star Trek quotes.

Stay tuned. If I start the new blog, I’ll let you all know where it is. Otherwise, a lot of my knitting friends are going to be exposed to some biology.  Feel free to let me know how you feel about that.J

Biology Brain

When I taught high school biology I had a sign over the door of my classroom that said “Biology is Life”. (I also had a poster with a picture of Charles Darwin and a caption that said “AP Biology: Adapt, Migrate or Die”, but that is another story…) Anyway, I thought my sign over the door was cute. And true.

This week I finally took on the task of weeding out my flower beds and getting them ready for the new year. Really, a simple and somewhat rewarding task, but for me an afternoon of rich classroom memories and an endless rush of biological trivia. It was so much fun, in fact, I thought I’d take all of you on a short trip through my garden. Ready? Here we go!

Unweeded Garden
What a disaster! This garden has several little tea roses, a beautiful English rose, and some nice perennials. Ugh. Mostly I see dandelions
Flower and Bee
Clever camera: it focused on the grass instead of the flower. (and my biology brain reminds me that the grass is a monocot and the dandelion is a dicot. Thanks bio buddy…) Oh, well. You can still make out the bee in the flower, can’t you? We think of dandelions as pests in our gardens (well, I do!), but they are actually early blooming plants and an important source of food for bees and 
Ladybug
my personal favorite (after bumblebees) the ladybug. Later on the youngsters from this beetle will help keep my aphid population on the roses under control, so that makes dandelions a good thing,
Dandelion Puff
I know that they are good for the wildlife, but I still have to get rid of these darn plants so my roses can shine. Look at this puffball of seeds (dandelions use wind as a dispersal strategy chants my brain… The seeds can survive up to 5 years and help the plant population survive fires…)
Dandelion root
and the root! I’ve been told that the root as also an adaptation to help the plant survive prairie fires. Don’t know about that one, but we all know we need to get the root out or the plant will come back. (That root is a tap root . Thanks biology brain…)
Pill Bug
Oh, wow. A pill bug! I love these guys. I would teach my AP Biology class how to make potato traps and assigned them the homework of catching 10 bugs over a weekend so they could design experiments using them in little choice chambers. The students learned how to design controlled experiments, drew conclusions about animal behavior, and the bugs had a fun outing and all the potato they could eat. It was fun, really. (Arthropods, crustaceans really, says the ever intrusive biology brain.) Over the years so many bugs were released in the flower beds at the front of the high school a robust population could be counted on to bail out any student team that forgot to do their homework.
Earthworms
Exactly the same type of thing happened at my house where yearly infusions of classroom earthworms established many happy garden occupants. (Annelids, says the brain. If you accidentally cut them with the shovel they will probably make it, but not as two new worms. ) My students loved to name and race their worms. If you put them in your hand you can feel the little bristles on their tummies (Setae! Thanks, brain.) The bristles anchor the worm as it pushes forward in the soil. Kind of like wax on cross country skies…
Rose Seeds
The English rose has a mature rose-hip with seeds in it. Look at these guys. I wonder if I can get them to sprout and grow. (…the seed is really a baby plant and the food it needs to grow. The food part of the seed is double fertilized so it has more copies of the roses’s chromosomes than the rose plant does. Roses, unlike humans, can have different chromosome numbers… shut up biology brain. Enough!!)
Finished Rose Garden
The weeding is done. You can actually see the rose plants OK now. They all came through the winter in good shape and are putting out new growth.  The largest rose is my Princess Alexandra of Kent rose, and it has started growing the first buds. All is looking good. Time to mulch, feed (plants need the elements in fertilizer to make more proteins and to copy the DNA in their cells so they can divide… yep, the brain is still going…) and get to work on the other jungles gardens.

Rich with life, details and memories, my gardens are once again growing.

Biology is life!!

DNA, Evolution, and The Signature of All Things

It seems that my life has become an exercise in synchronicity and random coincidences. I checked a book out of the library, read one that had been sitting on my NOOK for weeks, picked up a book on a sale table at Barnes & Noble, and remembered a video that I used to show my biology classes each winter. Strangely, they all fit together. No matter what I thought the book would be about, it began to talk about DNA and evolution at some point. How bizarre! All three books (The Signature of All Things, The Sociopath Next Door , and Orfeo) echoed things that I remembered from the video series Intimate Strangers: Unseen Life on Earth, which was broadcast in November 1999 on PBS. All these connections are just churning around in my head; here’s my thoughts about the video and one of the books, The Signature of All Things by Elizabeth Gilbert..

The episode that I’ve become fixated upon while reading these books is the first one in the Intimate Strangers series, The Tree of Life. If you would like to actually watch this episode (and all the others, of course) they are housed at Microbe World. The  biology classes saw this video when they were learning about taxonomy and the kingdoms of life.  In the video we meet Dr. Carl Woese,  a microbiologist of singular vision and drive. Working alone for years, chasing patterns in the mutations of a small, heavily conserved region of DNA, he pieced together the pattern of relationships between living things on earth. Using this information, Woese was able to determine the sequence of descent, establish common ancestors and eventually created a new “Tree of Life”. His work shook up the taxonomy world as domains were created (a grouping above “kingdom” in the normal sequence of “kingdom, phylum, class, order, family, genus, species”), and our understanding of evolution was enriched and altered forever. One man, working alone, chasing patterns in the musical score of life that is DNA, was able to change our view of the natural world.

This is what Dr. Woese says on camera in the video:

You have to have your own particular sensitivity to the world, and there has to be parts of it that are beautiful to you, because they’re beautiful to you regardless of what anyone else ever thinks. You see this all the time in an artist, and you see it also in good scientists.

This brings me to The Signature of All Things. In this book we meet Alma Whittaker, the daughter of a botanical robber baron. Raised in a wealthy and enriched environment that encourages learning and allows Alma to meet many eminent people in the scientific world, and possessing the logical mind of her mother, Alma is nonetheless trapped within the small world of her father’s estate. She sets up a lab in the carriage house, explores the land around her, and spends the majority of her life studying the world of mosses and liverworts. Small as her life becomes contained within the estate as she handles her father’s business and the details of life, it allows her to follow her “own particular sensitivity to the world” as she observes the interactions and changes in her moss populations; in truth she sees that mosses living within a timeframe much slower than our own engage in the same behaviors as the animal kingdom around her. It is a life of study in a world that is beautiful to her, and Alma is a good scientist.  Life altering events cause her to leave the estate following her marriage and the death of her father, and she travels to Tahiti and Holland, where the glory and chaos of a larger world help her develop a theory of evolution based on her understanding of mosses. This theory, while never published, propels her into a new life within her mother’s Dutch family and she obtains standing in the scientific community based on her own merits.

This was a good book. I’m a biology geek, so of course I liked it! Is it believable that Alma could have slowly come to a theory of evolution on her own? Sure. This book is a glimpse into the world that gave birth to the original theory. Science can always be pursued by a committed individual of observant and reflective nature. This was the time of Charles Darwin, Gregor Mendel, and Alfred Russel Wallace; Alma would have had access to the same ideas and published works that they had. All three of these men worked alone as gentlemen scientists, observed nature, designed experiments and looked for patterns. They wrote each other and shared their scientific ideas. Darwin and Wallace arrived at the mechanism of natural selection through independent work at about the same time; they published jointly in 1858. Mendel published his work in 1866, which would have been extremely helpful to Wallace and Darwin, but they missed the boat on that one! It will be almost 100 more years before we understood that the molecule of inheritance is DNA, and many more years before Carl Woese read the musical score of DNA to finally see the signature of all things.

Alma never publishes her theory because it can’t explain why all people aren’t sociopaths. Why does altruism exist, she wonders? How can natural selection account for what we see in people around us? Richard Dawkins addresses this very issue in The Selfish Gene. Guess what’s next on my reading list?

 

Duct Tape Story

I really like duct tape. I always had a roll in the classroom, and used it for emergency repairs, to anchor equipment in labs (like the bases of Bunsen burners) and to cover electric cords on the floor and tables. I used it to build hanging shelves for plants in my greenhouse. I repaired textbooks and lab notebooks with it. I would caution students (in jest, of course!) that I had duct tape, and I wasn’t afraid to use it! With a small tool box and duct tape, there isn’t much that an enterprising biology teacher can’t handle.

Smart Bed
Me working with a student on a temperature and pressure sensing “smart” bed. See all the pink duct tape?

I came out one day at work and discovered that my car had been hit on the bumper. I put duct tape on it and that was that.

A few years later, pushing my cart to the collection area in the parking lot, a woman stopped me. “That man just hit your car!” she said. Yep, he had. The crack on the bumper was now much bigger. The man who hit me was still there so I confronted him. He was an African, spoke with a British accent, and was pretending that he hadn’t hit my car. “Don’t lie to me”, I said in my best teacher voice. “If I walk to the front of your car I’m going to see the paint from mine, so just admit that you did it and apologize!” He did. Looking at his earnest, apologetic face, I suddenly saw my refugee students from Mali, Congo, Burma, and Sudan reflected in his manner and voice. One of my best friends, an immigrant from Nigeria, would kick my butt if I caused this man trouble. I thanked him for the apology, and when I got home I put on more duct tape. That crack was now much larger, but duct tape was on the job!

Backing out of a parking spot at Best Buy a few weeks ago I suddenly hit something. You guessed it, there was another car backing out at the same time and we were in each other’s blind spots. The bumper was now completely crushed in. No amount of duct tape would fix this! It had to be repaired. The other party, a visibly shaken up elderly woman who had been parked in the handicap spot, could hardly communicate with me. I found myself comforting her and telling her it was OK; since her car was undamaged, I would just take care of mine and we would call it a day. I decided to pay for my car repair out of pocket since it was kind of a no-fault deal, and I needed to get it repaired anyway. The repair was an economic blow at a bad time, but how could I make an insurance claim when the bumper was encased in old duct tape?

So I asked the auto repair shop where I should take my car to get it fixed, and took the car to the local shop they recommended. The girl in the office seemed strangely familiar: she was a former student! Yeah! The business was owned by her father, and she worked there in the office. She was the only person there who spoke English well.

Students Collecting Data
Students collecting data in hands-on lab about respiration.

Aside: I taught Sheltered Biology one year, and she was a member of that class. All of those students were non-English speakers and many were refugees trying to cope with a crash landing into our culture, struggling to learn a new language, and finding biology, a subject area that uses a new vocabulary every 6 weeks, a definite challenge. Students huddled together, shared visual materials, copied from each other, utilized lots of body language and built shared support books. We did lots of hands-on activities, labs, and watched video after video. It was the best of times and the worst of times.

There was lots of discussion in Spanish, parts were ordered, and the crumpled bumper part was removed. We agreed that I should come back the next week to have the new part installed.

Today I arrived at the collision repair shop, nervous about the cost, and discovered that there was a problem. The broken bumper part had disappeared somehow and the red reflector and the mud flap were missing. While the shop workers searched for the missing part, there was a phone call from the paint store. When the part had been taken there to get matching paint another shop’s employee had mistakenly taken it with them to Boulder (a city 45 miles away!). It had just been returned. Amazingly, this stranger had taken the time to return the bumper before we even realized it had gone missing.

Half an hour later the wandering bumper piece was back. The beautiful new bumper with perfectly matched paint was on my car flashing its reflector and mud flap like a pro. Stumpy (my car) looked great again! I turned to my former student and asked her how much I owed.

“Oh, we’re not charging you for this”, she said. “You’re my biology teacher!”

Teaching: the gift that keeps on giving! As I drove away with tears in my eyes I reflected on duct tape, kindness, and how I am connected to so many people over distance and time through this little car bumper. Car injuries often bring out the worst in people, but with a little caring and duct tape you can find that people are essentially honest and kind. What a lucky, lucky person I am.