My world has been shrinking. I haven’t been to the gym since March. My contact with family and friends has diminished. The outdoor visits have been made much more difficult by winter temperatures. I do my best to stay out of stores. I shop online for the things I need, including groceries. The only one in my bubble is Nancy. She finally got permission to work from home, but has to go into her officer periodically, which makes me nervous. I regularly ask her not to kill me. She’s trying.
Some weird symptoms last week sent me to the emergency room. That was daunting. Going to an emergency room during the covid is the last place one wants to be when avoiding sick people. They did a great job and I was told that I didn’t have a heart attack. I was sent for a covid test and a stress test. I was negative on the covid and my stress test was normal.
None of these experiences encourage an enlargement of my world.
As my social and physical world shrinks, so too does my photography. The fall in Ohio this year was spectacular. There are years when the leaves turn brown and drop to the ground quickly. Not this year. The month of October was loaded to the gills with multiple shades of yellow, orange and red. We take red for granted in the midwest and northeast. When I lived in Montana, one of my early observations about their fall is that red is a rarity. I found myself taking photographs of a small red weed poking out of the ground. Montana does make up for its lack of red with everything else … and I do mean everything else.
If you’ve been following my work … and thank you, if that is the case, you know that I’ve often been shooting with a 100mm macro lens, and a very shallow depth of field (f2.8). I am always drawn to abstracts, so my work involves finding repeating patterns and textures. I also do a lot of looking upward to find patterns and color in the canopy.
I made repeated trips to Highbanks Metro Park in September and October.
On the first day the covid vaccination is made available to me, I’m going to jump at the opportunity. The effectiveness of the Pfizer and Moderna vaccinations look great. It appears as though one of those two vaccinations will be the early options. The Pfizer vaccination is being delivered and administered as I write, and the Moderna vaccine was just approved.
All these vaccinations are going through the gold standard of trials in the United States. Phase one safety trials, and phase two and three efficacy trials – randomized, double-blind (neither the patients or the researchers know who gets the real vaccine and who gets placebo), and placebo-controlled. Rigorous science, transparency, honesty. Our government owes us nothing less, and I believe that is what is being delivered. While I would be first in line to receive this vaccination, I understand and appreciate the public health priorities, and will wait impatiently for my turn.
The people who have risked their lives since March certainly need this vaccine before me. I can remain at home, alone and photograph my belly button and toes until my world is allowed to expand. I will probably have access to the vaccine early in the new year.
For what it’s worth, I’m going to share my perspective on vaccinations and on the covid vaccines. I am not a medical or public health specialist. I have no education or training in these fields. I loved my physiology courses in college which introduced me to lots of body parts. None of these classes did anything to give me license to diagnose or treat anything. They merely gave me greater clarity to worry about what was going on inside of my body.
Like Jill Biden, I’m Dr. Siegel without a medical degree. Her doctorate is in English and mine is in Cultural Anthropology. She earned being called Dr. Biden. With 14 years of college, having passed my general examinations and two years of fieldwork research and a dissertation, I’ve earned the title. I like the title. I should probably ask my grandchildren to call me Dr. Zadie.
I am sharing what I have learned from life experience.
I have been involved in advocacy work from the time Pauline was diagnosed with transverse myelitis in 1994. We helped to establish The Transverse Myelitis Association more than 25 years ago. I am on the board, I am the president and I have served in numerous roles since our inception, including the newsletter and journal editor. I’ve participated in research, education, and support. After Pauline died, the board changed our name to the Siegel Rare Neuroimmune Association. We advocate for people who have rare autoimmune disorders that target the central nervous system. In the case of transverse myelitis, the immune system targets the spinal cord.
Autoimmune diseases are believed to be caused by a genetic predisposition to autoimmunity in combination with environmental factors. Allow me to put what I just said into some context. We are biologically the result of genetics, what we inherit from our parents, and from environmental factors. Environmental factors include our exposure to all the natural and human made substances all around us, in the air and in our water. It includes our behavior, such as our diets, exercise, and activity patterns. Environmental factors are incredibly complex and their interactions can make them even more so, like how much worse is a hot dog if you use both ketchup and mustard? Culture creates some of the most important environmental factors and the practice of medicine is one of those.
From 25 years of observation, I would conclude that we know and understand very little about the genetics of our immune systems and the environmental factors that influence those genetics. We are discovering new elements of our immune systems and learning about how it behaves all the time. Until the 1950s, medicine didn’t understand that autoimmunity was even possible; that the immune system could attack and destroy self. As I’ve noted in other articles, or blogs as you kids refer to them, the purpose of the immune system is to distinguish between self and foreign stuff (fungus, bacteria, virus) and then kill the foreign stuff. When the immune system attacks self, it is performing the most dysfunctional act. We are told that this dysfunction is likely caused by a genetic predisposition to autoimmunity and environmental factors. We don’t know the genetics or the environmental factors.
We have so much human-made stuff in our environments. Our immune systems are constantly being bombarded and are on high alter. Inflammatory diseases are a modern human occurrence. None of that is a good thing. Just take a tour of your house and garage, if you have one, and take note of all the crap you have collected that contains substances that you can’t pronounce. Those are all things that are a part of the air you breath every day. If you spend any time outside of your home, the amount of stuff you breath multiplies. And there’s stuff in water. Your immune systems have a lot of reasons to be riled up.
Most unfortunately, my work for the SRNA has included an introduction to the world of vaccination controversy. I’m going to start with this notion. I think vaccinations are one of the greatest discoveries humans have made. I can still remember standing in line at my elementary school with everyone in my family and the entire neighborhood getting the sugar cube that made it possible to protect me, and everyone else, from getting polio. I got all my childhood vaccinations. I get a flu shot every year. When the shingles vaccination came out, I got it. When the new shingles vaccination came out, I got both of those. I also got the pneumonia vaccination. Vaccinations have likely been among the most important ways we’ve eradicated some horrible diseases across the planet. I have so much respect for the work that Bill and Melinda Gates are doing to fund this critical work in public health.
When I started doing the advocacy work for the SRNA, I learned that children were getting a transverse myelitis diagnosis shortly after receiving one of their childhood vaccinations or the combination of vaccinations that are often administered at the same time. My children also got all these vaccinations – from their grandfather who was also their pediatrician. My children dealt with Grandpa giving shots. I preferred being hurt by the scary guy I didn’t know very well.
There are children and adults who get TM after they’ve received a vaccination. It is critically important to understand that TM is really rare. Getting TM after a vaccination is even more rare. The chances of getting TM are about one in a million – and those that might involve a temporal relationship with a vaccination are far, far less than that. About a third of the cases of TM are preceded by an infection of some sort and most aren’t preceded by anything. That is why the disorder is referred to as idiopathic transverse myelitis. Idiopathic means, we don’t know the cause. If there are people getting TM from a vaccination, that is a very small risk. And when considering the risk of getting the disease to which a person is being immunized, the risk-benefit evaluation falls squarely on the side of ‘worth the risk.’
If you are the parent of a child who became paralyzed after receiving a vaccination, my risk analysis rings worse than hollow. I get it. I’ve spent hours crying after hanging up the phone from talking to these parents. I’ve spent time crying with these parents. It sucks beyond belief. Some of these parents have won cases before the vaccination compensation panel or they’ve settled their cases. Is it possible that the vaccinations caused the autoimmunity? Until we understand a great deal more about our immune systems (the genetics and environmental factors), I can’t rule it out of my head. We don’t know the cause of TM. The vaccination’s purpose is to train the immune system to recognize a virus and then kill it if it should happen to show up in the body. That vaccines could be an environmental factor isn’t an insane idea. I wouldn’t ever argue with any of these parents.
Pauline believed that she got TM after receiving a flu shot. I wouldn’t argue with Pauline either.
So, where does that leave us? If you are a member of the Siegel Rare Neuroimmune Association Community, you have a more complicated proposition going on compared to the general population. You already had an autoimmune attack (so you know you are genetically predisposed), and some of you have recurrent disorders and are immune suppressed. We have a lot of information on our web site about vaccinations and we are developing some excellent information about the covid-19 vaccines. Please check our web site regularly for updates.
Please watch the interviews GG deFiebre conducted with Dr. Benjamin Greenberg. These videos are excellent. Even if you aren’t from our community, I would urge you to watch the interviews. It will help you better understand the new vaccine technology used by Pfizer and Moderna, and it will make you feel more confident about how the approval process worked.
Sorry about the ridiculous web addresses.
I am really concerned about the destructive potential that misinformation has in our society. Social media has facilitated its creation and dissemination. Facebook is a great way to stay in touch with your high school friends and it is a cesspool. Anyone can create a web site and say whatever they want. Like me. There’s a lot of misinformation about vaccinations. Over the past four years, alternative facts have been elevated to an art form.
As I’ve noted in previous blogs, if you are going to rely on educating yourself from information on the internet, the source of that information is critical. Please rely only on trusted sources of information, such as major academic medical centers. If you aren’t relying on a trusted source of information, you are cheating yourself of reasonable ways to make decisions.
It has been reported in the news that the Astra Zeneca vaccine was halted because of a possible adverse reaction. I believe CNN reported the adverse reaction to be transverse myelitis. Is it possible that there could be an adverse reaction to a vaccination? Yes. But those risks are very small, and the risks must be measured against the benefits, i.e., being immunized from a disease you don’t want. Speaking personally, I sure don’t want covid. More than 300,000 people in the United States have died from it. It is spreading rapidly across the country. I just heard on the news that more than 80 million people are planning to travel for Christmas. That is just crazy, and the spread is going to be getting a whole lot worse. Our bodies have never experienced this virus, which is why it is so virulent, and we don’t know the long-term impacts from this disease.
Each of us make decisions in our lives all day long, every day, that involve risk. Regardless of whether you are risk averse or accept risk as a normal occurrence, we’re all involved in these analyses for ourselves. How much risk can you tolerate to achieve a benefit? Any time you get into a car or truck, you are taking a significant risk. I’ve been in five car accidents. One of them was serious. I will forever not know how it was that my head did not go through the windshield of my Volkswagen beetle, with no seat belt, and a head-on collision going 40 mph. I’ve also had numerous close calls on the highway. Adding a cell phone to the driving experience substantially increases that risk. It sure doesn’t seem to be slowing down very many people from getting into a car multiple times a day even with the risks of being maimed or killed by the experience.
If you played a contact sport or your children play any kind of contact sport, you are accepting some significant risks. If you scuba dive or ski or parachute out of a plane, you are familiar with risk. If you have a sweet tooth or love fried food or smoke cigarettes, a pipe or cigars or you drink a lot of alcohol, you are no stranger to risk. If you never get any exercise and are overweight, risk is your friend. My point is that we all measure risk for ourselves in the decisions we make about how we live our lives.
From my perspective, taking the really small risk of getting a vaccination for the great reward of avoiding a horrible disease be it measles, pneumonia, polio, or covid-19 is a total no brainer.
The news has also recently reported that some people seem to have had an allergic reaction to the Pfizer vaccine. It happens. People have all kinds of allergic reactions to medications and to lots of other things, like peanuts, milk and gluten. Pauline had an allergic reaction to Tegretol. I’ve had an allergic reaction to nsaids. I didn’t find out that I had a problem with nsaids by getting a genetic test. I found it out by taking it and then experiencing an uncomfortable bodily reaction. That’s how we learn our allergies. And that’s how people are going to find out that they have an issue with this vaccine. From the clinical trials, it is likely that the numbers of people who could have this reaction is going to be very small. That’s why they are requiring people to stay for 15 minutes after being vaccinated. They want to be sure you are not going to have a negative experience.
And we’re going to keep learning more and more. And here’s the benefit that we’re all going to have from the way this vaccination program is going to work. This is likely going to be the largest vaccination program ever carried out in all of humanity across the world. Dr. Greenberg explains how these vaccinations are receiving emergency authorization. Given the health risks of the covid virus, the vaccines are being approved with smaller numbers in the trials. By the time you get it, however, there are going to be millions and millions of people across all ages, genders, and backgrounds that have received the vaccinations. We’re going to understand a great deal more before you decide to have that needle stuck into your arm.
We know from the reported effectiveness that the vaccinations will keep you from getting sick and from dying. What we don’t yet know is whether the vaccinations will keep us from infecting others, i.e., whether it gets our immune systems to kill off enough of the virus that we aren’t contagious. We also don’t know how long the vaccination lasts, i.e., will we need it every year, every few years or will the impacts last even longer. There’s much to learn. For those in the Black and indigenous communities who don’t trust the medical establishment or the government, you’re going to be able to watch millions of white people get this before you decide. Please watch carefully so you don’t have to wait too long to get it.
I sure hope everyone decides to get it. The odds are great that it will be good for you, for your family and for society. And it will involve a great deal less risk than getting into your car with your cell phone, listening to Led Zeppelin turned up to 11, while eating a big mac driving 70 mph.
When making your decision about receiving the vaccination, please rely on your personal physicians. If you are from the SRNA community, please also rely on your neurologist. These are the doctors who know you best. They know your medical history and the medications you are taking. You should discuss the vaccinations with them. I’m sure they are following the medical literature and the medical advice carefully – for you and for all their patients.
We’re experiencing an out of control spread that was going on before Thanksgiving. It has only increased from the holiday and with Christmas happening this week, I would highly recommend not having a heart attack, or stroke or any kind of accident. There’s no room for you in any hospitals in the country.
The Orange Emperor has been lying to us about the virus since it hit our shores, and then decided to subscribe to a radiologist’s suggestion to rely on herd mentality. He’s never had much interest in governing, or being a decent human being, or protecting and defending anyone besides himself. He’s not interested in the pandemic or all of the suffering it has caused. Since the election, the Orange Emperor has decided to focus on orchestrating a coup and playing golf. It would be great if he could just tell the next administration to take over, but he won’t. He’d rather undermine the next administration.
In the meantime, Pfizer reported that they have a million doses of vaccine sitting in warehouses waiting for the federal government to tell them where they want all this stuff shipped. The Russians appear to have lots of our information. Perhaps we should ask Putin where the vaccines are supposed to go.
Please don’t kill Bubby and Zadie.
Please wear your mask.
Please social distance.
Please wash your hands often.
Please support your small local businesses and restaurants.
Please hold off on scuba diving, skiing and having a heart attack until we know there are some beds available in your local hospital.
Happy Hanukkah and a very Merry Christmas.
Well done and well needed - all the best over the Holiday Season and long past . . .