As the month of October nears the edge of fading into November, I still have not composed this post that I had intended to write at the beginning of the month. A month that has been set aside to recognize a couple of illnesses, some that you have heard of including Breast Cancer Month and some that you have not, for example, Dysautonomia Awareness Month. The goal of earmarking these months is to raise awareness and generate funding for research, and in turn help to treat those afflicted and hopefully get closer to finding a cure or at least treatments that improve the lives of those diagnosed. This recognition also validates in essence the struggles and trials that these illnesses bring on to those effected and their families.

As my pen hesitated on my paper, for I still begin my writing on that age old stand by, the difficulty writing this post derailed me at every angle for we are immersed in this topic daily, having two sons whose lives have been altered with what is referred to as an invisible illness as well as a rather unheard-of invisible condition. Both of them, unless you have been reading my blog for a very long time or you just saw the news story on the music artist Sia, you have most likely never heard of, can barely pronounce, nor know anyone close to you who has either one of them. The lack of awareness is changing, however, due to visibility particularly given when well known people who are in the public eye, give them a voice… Tori Foles, the wife of Nick Foles, the former Eagle’s Super Bowl winning quarterback who has POTS, and Sia, the musician who just revealed that she has been struggling with EDS which stands for Ehlers-Danlos Syndrome, a connective tissue disorder. Even in the medical community, many doctors are unsure of how to treat their patients with it and the specialists, who are few and far between, disagree in its causes and how to best attack it, although they think that they are somehow connected. Those that are closest to it are well aware of this and more importantly know all to well the way that it has insidiously taken away the normal everyday. We mourn for the lost experiences that these illnesses have brought on as their baggage. The lost proms, the lost friendships, the lost graduations, the lost college departures. These LOST moments, combined with the everyday experiences that they were not to experience, create lapses in their development and emotional status while creating incredibly resilient and mature young people. For its target population is the young, just beginning to emerge into their real selves, adolescent. Five to one female to male actually. We certainly broke these odds but have not broken the fall out that occurs when one is diagnosed with a condition or conditions that have very little awareness, visibility and even fewer outward signs and nods to its existence.

“You don’t look sick.”

After my pen to paper process began in earnest, and the words started flowing, I started typing the words onto the computer. As I read and re read what I had written, I shook my head in frustration and made the decision to delete most of it for I realized that I was trying to do what we have been doing for years… explain. Explain why Shane, our first son to be diagnosed, wrote an essay, The Excuse, after struggling with the symptoms in high school for some time and why he, as a national merit scholar, ended up getting a GED to graduate high school. Why he has been in three colleges and is still at home with only enough credits for maybe his freshman year. Why our youngest son missed a year and a half of school and has just gone back part time and MIGHT be able to graduate with his Senior class. Why, even though they experience physical symptoms daily, many patients are told for years, that it is all in their heads. What they have is an Invisible Illness. They look well enough albeit it skinny and pale. The people they encounter, including extended family, have never heard of these conditions, let alone truly understand them. This illness effects so many aspects of their being that how could it do so, when people aren’t even talking about it? Let’s face it, however horrifying, it is much more recognizable and people are more able to understand why they cannot go on with normalcy if when asked,”What do you have?”, you reply with a much more recognizable well known illness. However heartbreaking, arduous and emotionally, physically and life changing ANY disease or illness is for all involved, the response is a resounding sympathetic and understanding one when we have heard of it. When we somewhat understand the effects of it. When one replies I have POTS or EDS, the response is often, “What is that?” We often receive the response, “Is that the sleeping sickness? Why can’t they just get up?” Imagine our horror and guilt, when we, their parents were saying just that when we had no idea what was going on?

Such that, when both sons suddenly started to exhibit symptoms suddenly, we ignored them attributing them to normal teenage behavior of sleeping a lot, not wanting to get up in the morning, etc. It wasn’t until we would find Shane then 15, “sleeping” on his floor 5 minutes after finally getting him out of bed after trying for two hours, that we actually went to the doctor. It took four months of doctor visits and many incorrect diagnosis before we got to the root of the problems. And we were lucky, the average diagnose is four YEARS! Flashback to that horror and guilt comment that I made above. Imagine our horror and guilt, when we found out that he wasn’t sleeping again on the floor due to laziness, he was literally passing out. While that is not invisible, the things going on in his body causing him to do so are.

Before I go further, let me clarify that ANY and ALL illnesses that make life difficult to live and make you truly realize how precious your health is are challenging, mood altering, scary, and create “life is not fair moments.” ANY of them. In this post, I am speaking to illnesses that you might never have heard of or ones that you might have, but do not have the visibility in the public eye. In recent months and even in the last couple of years, there has been an upswing in addressing, recognizing and making visible… invisible illnesses… especially mental illness. It’s an awesome trend. Unfortunately and tragically, much of it has been spearheaded by tragic events of well known, in-the-public-eye people to make it “real” to the public even though a large segment of the population has already been suffering in silence. What can we do about this? We can continue to talk about these Invisible Illnesses, so much that they become visible, if not by symptom, by recognition. We need to MAKE people aware of them, to spread what they are all about. We need to recognize that people might be dealing with and living with illnesses that cause issues and challenges in living that while we might not understand them, we accept them and we validate them. It is often just validation that people need to bolster them up enough to be able to face their difficulties and challenges that they have no control over. Even though our plates are full with what is going on in our own lives, we should be thinking about what is going on in the lives of others and dig deep to see if we can help them. Most often, that is done with pure acceptance, acknowledgment that they are struggling, and reaching out so they don’t feel invisible.

What I deleted in my edits of this post was all the medical jargon. I didn’t go deep with discussion of the sympathetic and parasympathetic nervous systems for I definitely would have lost you there or any of the rest of it for that matter AND that was not the goal of this post. When spilling out all of the medical terms that we have learned over the last 9 years, I realized that I was trying to yet again, to explain what POTS and EDS are. I might never make people understand what condition has so effected the natural progression of our sons’ lives but someday I hope that will change. That they will not constantly feel that they need to explain what they have that makes them not be able to show up to life’s activities and that they will not define themselves as having an illness that causes these no-shows. It is difficult enough to find our place in this world yet even more so when one is challenged with their health.

Shane recently shared an essay with me that was written by the mother of his girlfriend, Miriam. She had written it as a recommendation letter for him for college. Upon reading it, I was blown away and emotionally drained for her letter gave me a perspective into Shane’s illness from an outsider that I often thought was happening but had not put into words. It also gave a perspective that Shane has often spoken about concerning illness, our use of terminology upon speaking about it and the words we choose and our western view of it. I share some snippets of it below:

“When I first met Shane he was a new friend of Miriam, my daughter. He joined us for Chinese and was remarkable for being able to carry on a sensible conversation with a strange woman (me) and for ordering an elaborate duck dish that he barely picked at. He seemed kind of out of it—”

“Miriam mentioned Shane more often during our telephone conversations. He was smart. He was fun. He was cool. He had dysautonomia, the POTS kind. He slept a lot or didn’t sleep. He was sick sometimes. He was a good listener and a bit aloof. He wrote poetry. He read literature.”

“Fast forward a year and they began dating. He met us at my mom’s house. He slept a lot. But he made Miriam laugh and seemed to care for her. And then I realized that Shane slept a lot. Like 15 or 20 hours at a go. He also rarely ate. We would go somewhere, and he would stay in bed. Miriam often brought him food to the guest room. And I admit it, I was not pleased at all. We are a family where you do everything together and staying behind is just not an option. He has POTS, Miriam would remind me; his blood pools while he sleeps; he can’t just wake up right away. I believed her, I knew that he was sick, but…’

Pay attention to that word BUT

“There was this continuous “but,” the feeling that he wasn’t trying hard enough. That he was lazy. That he was spoiled. And then he came to England with Miriam to stay with me and my husband for part of the winter break. More sleeping, more not really eating, more spending what I considered insane amounts of time in bed doing seemingly nothing. I liked Shane, but. The low point came when it was time to bring him and Miriam to the airport. It was a long drive to London and the kids had an early flight. It was time to leave, and Shane hadn’t made an appearance. We started to do what we knew to do. We yelled at him to get in the car. Finally, we screamed at him to get his ass in the car. And he did. Half asleep, without shoes in the winter, clutching the railing to keep himself from falling, he got his ass in the car.”

“After Shane left I started to research POTs. But it didn’t help. I was worried about Miriam dating Shane. The but loomed larger than his excellent points. They came again to spend time with us in England. Shane spent most of his time in bed. This time he was with us for months. Some days he was up and about. He worked out. He walked the dog and baked bread. I felt like we were doing him some good, giving him some structure. And then one morning I was yelling at him to get up and get going. He said in this really calm and kind voice that if he could he would and yelling at him didn’t make his blood move. I think it was his voice, the tone and timber, that made me realize that this wasn’t about me. It wasn’t about Miriam. It wasn’t about Shane. It was about POTs.”

“The but slowly drifted away as I saw that I was caught in the Western paradigm of sickness being a choice. You know, “she bravely fought cancer and now has years left with her children.” Or, “Despite her fighting spirit, she lost the battle with cancer.” Like you have a choice to be well. Like you are somehow weak if you are sick. And add to this the fact that Shane doesn’t look sick. He looks fit and handsome, albeit too thin; like a J Crew model who needs to eat more carbs. This narrative of suffering, and what it looks like, is the story we tell ourselves and the one we believe.”

These excerpts are raw and real. They are shared here with much consternation but have been signed off on by both their writer, now a dear friend, and the subject of its passages, our son. They are shared with the intent that life is raw and real, experiences are raw and real. If we can understand that we ALL deal with raw and real on an everyday basis and consider that when interacting with each other, we just might be able to help the suffering that raw and real often create. Consider whether we need to be right or whether our perceptions as what we think as fact or right, really is… and whether or not it is important in our interactions.

In closing, I want to emphasize that while trying to create awareness for these illnesses that are not in the forefront of the medical community nor in the public eye, I also want to recognize you; those that are carrying their illnesses with them for all to see whether with their symptoms or their recognizability of what they have… or those that carry their symptoms in silence with a public unawareness to what they have. You are all beautiful souls, challenged and tested with a cross that is often too heavy to bear. We see you, we acknowledge you and we are asking what we can do to help you carry that cross?

With Love,

xoxo ~ Meg

To read more about Dysautonomia click here.

To read more about Ehlers-Danlos Syndrome click here.

Closing

Call it a self pitying fetish

Tell me 

the last time these words

spoke of anything but sickness

Call it the fetishization of dysfunction

Let me tell you about dysfunction 

                               of

The sympathetic           The mind’s inability

and parasympathetic    To separate past 

nervous systems.          From present.

Call it a fetish for weakness wallowing 

Tell me the last forget

Tell me the forget

Tell forget

Call it a fetishization of a memory untouchable

Tell me the last time these words sung

These words were fit to hold a highrise

a masquerade ball a funeral a protest

Tell me the last time these words radiated an incandescence so brilliant

that passersby were forced to stop and engage

Were forced to tell me that I’ve moved on

~Shane Veno