I went to see the movie Inside Out today. It’s entertaining, fun and light – nothing too deep here, or even 100% accurate, but let’s not forget it’s a movie and not a scientific paper. More importantly – and not wanting to give away too much here – the movie is also a reminder that all our emotions play an important role in shaping who we are and keeping us safe from danger. Often we want to shut out the most unpleasant ones – sadness, fear, anger – but they are needed, and nothing else would exist without them. Continue reading
I must confess I struggled to finish this book. It is filled with numbers and statistics that, while informative, do not account for the human side of each story and the countless variables that may contribute to the development of disease. It is also very gloomy – according to the authors, no matter what you do you will end up scarring your children for life. If like me you haven’t had children yet, you’ll be left with the feeling that you won’t be up to the task. And if like me you have one or more chronic illnesses, you’ll be told it’s all your mother’s fault. I know there were specific events in my life right after I was born that may have contributed to trauma and chronic stress and anxiety, which in turn may have turned my immune system against myself, but that’s likely just half the story. The way trauma, disease, abuse, attachment and relationships are depicted here is just bleak. There is not much room for successful interventions and outcomes.
The most interesting sections I found in this book was one on epigenetics, which led me to search for more on this topic (I purchase more books than I have time to read), and another one on EMDR. I did a session of EMDR at the beginning of the year and this was the first time I read about it in a book as one of the therapies for trauma. Still, this being the second of two books I purchased on PTSD, trauma and disease, I recommend the first one I read, The Body Remembers, as a much better option to understand the neurobiology of trauma and how trauma can be overcome.
Bummer. So I had my first official relapse in less than three years after my diagnosis. I don’t really remember how this goal came up. I think I read or was told that the first three years after the diagnosis are crucial to understanding how fast the disease is going to progress. I was hoping that if I made it to that three-year anniversary I would have a good prognosis, but I feel like I failed. Of course statistics are just statistics, and in all honesty I don’t think my immune system keeps a calendar and counts the days. I’m the one doing this and adding meaning to something that may not have any meaning at all. What is wrong is not my MS (well, apart from everything that’s wrong with it) but my expectations, that were probably too high. Small goals, one day at a time. Keep it simple. I’ll be fine.
And I actually am. I went through this entire relapse in a very rational and collected fashion. My therapist told me that if I were always like this I wouldn’t need therapy anymore. When physical symptoms arise, sometimes mental symptoms like anxiety and dissociation move out of the way because the body needs to keep its cool in order to survive. But I actually have a simpler explanation. I was calm mostly because the whole thing was a déjà vu. It happened pretty much the same way it did in late 2011 when I was diagnosed. Let’s see:
- Day one: woke up and my vision was weird, though it took me one day to figure out exactly how weird. 2011: right eye with blurred and double vision. 2014: a shadow on my right eye, pain when I move the eye very quickly.
- Day two: the headaches begin. I was later explained the headaches are an indirect symptom. The brain realizes that there is something wrong with the data the optic nerves are sending, and thus corrects it. Doing so for all the hours we’re awake is literally a pain in the brain.
- Day three: dizziness and vertigo. Probably an indirect symptom as well. 2011: it still took me more three days to go to the hospital and hear the verdict that I had a nerve paralyzed and that was causing the double vision. 2014: on the third day I just called my neurologist and heard the verdict: the dreaded optic neuritis. The good news: the nerves involved in both cases are different, so it’s likely that my previous lesion in not bigger and that this one is new. Either way, I still fear that in ten years time my vision will be seriously compromised. Let’s hope not. I casually asked my neurologist what would have happened if I hadn’t called and instead let the inflammation run its course. She told me that my vision could have worsened and the remission might not be total, leaving me with permanent damage. So 5 days of methylprednisolone was the best option to make sure everything went back to normal.
Now as for the déjà vus regarding the context in which these two exacerbations occurred:
- Many people relapse while they’re going through a stressful time in their lives. Not me. I apparently relapse when everything’s fine and I’m feeling stable and quite content with things in my life. I read once that according to studies new lesions form in the brain and spinal cord around seven weeks after a stressful event. The explanation is that stress slows down the immune system. When everything goes back to normal, an overactive immune system like that of those with autoimmune conditions, comes back in full force and starts wreaking havoc. That makes more sense to me if I consider my experience. Back in 2011 the first six months of the year were of non-stop stress. Chronic stress. Then things started to get better and by November I was feeling happy. How weird. I almost had forgotten what happiness was like. And then, much like self-sabotage, it all went down the drain. This time around I spent the month of July struggling with fatigue and worrying about different stuff, and then I slowed down, went away, relaxed, exercised more, reflected on where I was and where I wanted to go next… I wasn’t exactly feeling my happiest me, but I was peaceful, my mind was not at war with anything. And here I am again.
- On the other hand, while I was feeling relaxed and content, both in 2011 and now I decided to stop daydreaming so much and put my feet on the ground. After all, I live in reality, not in an alternate version my brain likes to idealize. I dream of running away, of getting away from everything that makes me feel stranded. I dream of a life with more freedom. But I also need to focus on the here and now so I might as well stop building castles in the air. Turns out, dissociating seems to be working as a safety blanket for me. Once I threw it out, reality hit me right in the face. Punched me literally in the eye.
- Both in 2011 and now I had just started reading a book by Haruki Murakami when my vision decided to stop working properly. In 2011 it was 1Q84 and now Colorless Tsukuru Tazaki and His Years of Pilgrimage. This coincidence is almost as surreal as Murakami’s books. I’m actually thinking about writing to him asking him not to write another book for the next ten years, so I won’t relapse.
- My mom was in utter denial. I’m considering using my mom’s reactions as an indicator of how bad the situation might be. In 2011 she told me I was just stressed (no, mom, I’m not, besides I never heard of stress causing double vision). Now she told me there were a lot of strange viruses out there and that I might have caught something (not when I’m having all these déjà vus, no).
- As usual, it was my therapist who took my symptoms seriously and nudged me to see a doctor. In 2011 she was harder on me: “You’re going to get out of here and immediately go to the hospital.” This time she just told me, “I think you will find out for yourself soon that it’s best to hear your neurologist’s opinion.” I think I’m getting better at taking care of myself, but it’s still sad that I need someone to encourage me to do so.
Of course, comparing 2011 and 2014, there were some differences too. First let’s have a laugh:
The day before I went to see my neurologist and started on methylprednisolone I was told at my job that I was going to get a raise in recognition of my hard work. So what do I do the day after that? I call in sick. Ha! They are probably having second thoughts on that raise right now. The universe truly works in mysterious ways. (And I love my life.)
Also, this time around my moment of self-pity only lasted about thirty minutes. I let my eyes well up with tears (I actually didn’t let, I just couldn’t help it) while I engaged in some “this isn’t fair, I didn’t do anything wrong, I don’t deserve this disease, neither the amazing people I know with MS, this doesn’t make sense”, etc, etc, etc. But then I realized that, the same way I don’t think my immune system keeps a calendar, I don’t believe it holds a court either. Nor do I think I’m on trial. It just is what it is.
So right now I’m doing what the doctor told me and just resting in between IV treatments. The weather is cloudy here, so it’s good to watch movies, mostly animation, teen movies and comedies. I’m just not in the mood for deeper stuff. Of course being the very sensitive/emotional/hormonal/depressive young woman that I am, I cried in all of them, even the comedies. Yep, that’s me. Sometimes I feel fragile and defenseless like a newborn, but like a newborn I will be kicking and screaming for my life. As soon as I’m “normal” again, I will be back on my active lifestyle, hungry for life, knowledge, growth and experiences.
I will be putting up a fight.
Yesterday my summer vacations started. I’ll be at home until tomorrow, because there are things I need to organize and take care of. On Saturday I will leave to spend some days at the beach and then some more days in the countryside, and I’m looking forward to it.
But yesterday something really uncomfortable happened to me that I wish hadn’t disturbed my first day off from work. One of my neighbors is an old man in his 80s who used to be a policeman. He minds everyone’s business and spends his days checking who enters and leaves the building. Despite the fact that he claims he can’t see or hear very well due to his age, he knows everything that’s going on. He also walks around checking on the things the building might need, such as a new light bulb, to report to the person in charge, which this year happens to be me.
So he probably saw my car parked during the morning, concluded I was home and decided it would be a great idea to knock at lunch time. Except he doesn’t really knock once or twice and wait like normal people do. He insistently presses the doorbell and knocks on the door with his cane really hard, like the building is on fire in the middle of night and everyone needs to wake up and leave.
I was peacefully finishing lunch while looking at some college stuff I need to take with me when I go away and I suddenly froze when I heard this. The first thing that came to my mind was something that happened when I was about 9 years old. My mother was dating at the time a really charming and intelligent man who had a terrible flaw: he drank, and when he did he became violent. So one night he came pounding on our door so drunk we couldn’t even make out what he was saying. I remember my mother telling my sister and I to hide in the closet, while she picked up a knife and desperately tried to call my uncle to come help us.
Yesterday I was 9 again, frozen, heart racing. I couldn’t react like a normal adult. Though I rationally knew what was going on with me, my body reacted automatically perceiving danger where there was none, because my body learned really early that someone at the door like that meant bad news, so it turned on a stress response I couldn’t control. After this went on for some time and the old man was still at the door, I managed to gather a thought: I thought I should call the police. And then I realized how ridiculous that thought was. I basically managed to tell myself I’m not 9 anymore but I still perceived myself as in danger. And this unfortunately sums up much of my behavior in life in general. I’m hypervigilant and have always had so much trouble sleeping all my life because I never feel completely safe. This chronic stress messed up my immune system and resulted in autoimmune diseases. And what’s missing from therapy is that I know all the roots to my problems but I haven’t yet managed to change my reactions and behavior patterns. I need to take that leap. Or I’ll just keep getting sicker and sicker.
Last night a conversation started on Twitter about the triggers of multiple sclerosis and the question if an unhappy and stressful childhood could have messed up the immune system. I mentioned I lived my childhood with chronic stress and that has been proved to influence the immune system. When I woke up today a lot of people had stepped in with different opinions. Some of them acknowledged they had difficult family backgrounds, someone noted that while having had an unhappy childhood their brothers and sisters were fine, someone blamed it on a bacterial infection and some people mentioned genes were the only factor involved.
I believe that somehow all these are connected. Genes play a part. They carry the information that determines which conditions you’re more likely to develop. They’re probably the reason some people develop multiple sclerosis, while others develop rheumatoid arthritis, ALS, etc. However, they can’t be the only reason. And now I’m going to quote Robert M. Sapolsky on this article because he explains it a lot better than I do. Robert M. Sapolsky wrote one of my favorite books on stress, Why Zebras Don’t Get Ulcers, and here he discusses the role of genes:
Each of our 20,000 or so genes specifies the construction of a specific protein; proteins shape the structure and function of cells, the communication between them, and their collectivity as organisms. Scientists once thought that, starting at the beginning of a chromosome, there’d be a stretch of DNA coding for gene A, which directed the construction of protein A. Immediately after that would be the DNA coding for gene B, specifying for protein B, followed by gene C, and so on.
But this turned out to be wrong. Between the stretches of DNA coding for two genes came a stretch of ‘non-coding’ DNA, once pejoratively called ‘junk DNA’, of no obvious use. Then came the astonishing discovery that approximately 95 per cent of DNA is non-coding. It can’t be that nearly all of DNA is junk; instead, much of that 95 per cent is the instruction manual for using genes. More specifically, these ‘regulatory elements’ are the on-off switches determining when and how much a particular gene is transcribed (ie, prodded into instigating the construction of its protein). Just before the start of the DNA coding for a gene is a stretch of regulatory DNA constituting that gene’s ‘promoter’. If a particular ‘transcription factor’ comes floating over from somewhere in the cell and binds to that promoter, this triggers transcription of that gene.
So what could trigger these “transcription factors”? The answer is the environment. And environment can mean a lot of different things. That’s when lifestyle, infections, stress, emotions, etc., come in. In other words, you can have the genes that predispose you to develop multiple sclerosis, but without the right triggers you have a chance of never developing it. If it wasn’t the case, twins would suffer from the same conditions, and we know that’s not always true.
Drifting a little away from the genes topic, but still reflecting on the Twitter conversation, I started wondering about some things. While I don’t consider I had an unhappy childhood, I do know I come from a dysfunctional background. My parents divorced when I was 2 and my father didn’t care much and was always very absent. My mother was always too busy dealing with way too much she could handle on her own and didn’t pay much attention either. Except when I was sick. I remember when I was in hospital at 5 my father came to visit every day and brought me presents. My mother had to stop everything and take care of me whenever I had asthma attacks. So I wonder if I unconsciously learned in my childhood that being ill was the only way for people to pay attention to me and care for me…
When I was diagnosed with multiple sclerosis, my neurologist explained to me in broad terms what happened in the brain of people with this condition. I realized it was an autoimmune disease, to which she said yes, it could be considered an autoimmune disease. I sobbed a little more (I sobbed the whole time) and asked her “So this is another way I found to hurt myself?” She told me not to think about it that way but looking back it makes perfect sense that I have an autoimmune disease (two, if you count with endometriosis). I never tolerated myself much, always brought myself down, and due to specific circumstances in my upbringing I never had much emotional independence, sense of self, or psychological boundaries. So no wonder my body was confused and shooting whatever seemed like a nice thing to shoot.
Autoimmunity fascinates me from every perspective. From a biological point of view, it’s not very smart, is it? It’s just pure self-destruction. From a psychological point of view, can our body really reflect a poor sense of self? Or is there more to it that we don’t even dream of? It remains a mystery, one that scientists are still trying to find answers to. And the list of autoimmune diseases keeps growing, as evidence suggests well-known diseases such as schizophrenia may have an autoimmune pathogenesis. Wikipedia lists many of these with links to scientific articles. It’s worth taking a look.
It is also worth taking a look at how other authors see autoimmunity. In Why Zebras Don’t Get Ulcers, Robert M. Sapolsky notes that both physical and psychological stressors seem to cause an early stage of immune activation. However, long-term/chronic stress begins to have the opposite effect, namely, suppressing immunity. But why can’t we not just let our system remain at the enhanced, improved level achieved with temporary stressors and “get the benefits of an activated immune system all the time? Metaphorically, why not have your military that defends you always on maximal alert? For one thing, it costs too much,” he explains. “And, even more important, a system that’s always on maximal, hair-trigger alert is more likely to get carried away at some point and shoot one of your own guys in a friendly fire accident. And that’s what can happen with immune systems that are chronically activated – they begin to mistake part of you for being something invasive, and you’ve got yourself an autoimmune disease.”
Doctor Gabor Maté also links autoimmunity with chronic stress, but he goes further along the way explaining that chronic stress most of the times originates from relationship patterns established during childhood. In When The Body Says No he writes that “The blurring of psychological boundaries during childhood becomes a significant source of future physiological stress in the adult.” He notes that “Within the individual organism, physical mutiny results from an immunologic confusion that perfectly mirrors the unconscious psychological confusion of self and non-self” and adds that “Cancer and ALS and MS and rheumatoid arthritis and all these other conditions, it seems to me, happen to people who have a poor sense of themselves as independent persons. On the emotional level, that is – they can be highly accomplished in the arts or intellectually – but on an emotional level they have a poorly differentiated sense of self. They live in reaction to others without ever really sensing who they themselves are.”
This unfortunately makes perfect sense to me considering my personal history. I’m not sure how it applies to the millions of people diagnosed with these diseases but I think it adds a valuable ingredient to the genetic and environmental factors we know about. You see, I always wondered why my sister had mono when I was 8 and I didn’t catch it then, even though I would steal her lipsticks and drink from the same cups. I caught it when I was 18. And why when exposed to the same flu virus some people are bed-ridden and other just have mild symptoms? The virus is the same, right? So there’s got to be something in our immune systems, which in turn are highly influenced by our emotions, that determines whether we’re going to get sick or not.
There is a famous story about Louis Pasteur that illustrates this view. Claude Bernard, his contemporary, thought that germs would only cause harm to the body if it presented the right conditions for them to thrive. He emphasized that it was more important to keep the organism “clean” and in balance than to attack the germs. Pasteur didn’t agree. He thought germs and microbes were the only reason people got sick. However, later in his life he came to change his mind. He’s quoted as saying on his deathbed, “Bernard avait raison. Le germe n’est rien, c’est le terrain qui est tout.” (“Bernard was right. The microbe is nothing, the soil is everything.”)
It’s true, zebras don’t get ulcers. For one thing, they don’t worry about things that are probably not even going to happen. Ever. Humans are the only ones who have that ability, and very often when we worry our body turns on a stress response, flooding it with a number of stress hormones that will promote a series of changes in our organs and our natural balance – heart rate goes up, immune system is suppressed, blood is diverted to muscles or wherever is most needed… Basically we have evolved to turn on a fight-or-flight response like zebras and other animals, however, unlike zebras and other animals, we don’t turn it off as easily – and that’s because most of the time we don’t react to threats, but to perceived threats.
This is one of the basis to chronic stress. And we know that chronic stress can damage our body in many ways. It doesn’t necessarily means chronic stress is the cause to several diseases. It means that chronic stress, by permanently altering the body’s homeostasis, creates an environment in which it becomes impossible for the body to fight other factors, such as genetic predispositions or environmental risks. This is true for autoimmune diseases but also for heart conditions, ulcers, depression and many more.
Why Zebras Don’t Get Ulcers is the bible of stress. It’s not a book about a specific disease, it it rather a book about how stress can pave the way to many diseases. Each chapter focuses on a different system: cardiovascular, respiratory, endocrine, digestive, immune, reproductive… It also includes chapters on sleep, pain, memory, depression and anxiety, and addictions. And it doesn’t leave you with that. It includes insights on stress management, coping styles and how personality and temperament come into play.
The book is rather long and at certain points can become a little technical, but it is also filled with humor, relevant research and even the author’s personal experiences. If you needed further proof that you need to work on all that stress that invades your life uninvited, then this is the book to turn to.
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