A year ago, I thought I was pretty familiar with anxiety. We were more than acquaintances, a first name basis. He came for lunch, sometimes stayed for dinner, and once in a while, he had a bit too much drink and crashed on the couch. That friend that overstays his welcome by a few extra hours, the one that doesn’t take a hint when you tell him you have an early morning meeting to get up for. I thought I knew him. I thought I knew him well. I trusted him, there was an understanding: he provides a low level of motivation to help me power through life, and I only evict him with Xanex when he gets too rowdy. Then I had to schedule an EKG for my 7-year-old. That night, anxiety had more than a few too many, he didn’t crash on my couch, he didn’t become the life of the party; his eyes went dark, he crawled into bed with me and made himself comfortable. He whispers in my ear slowly, methodically, repetitively. He threatens my sanity with a calm, terrifying voice. He isn’t the inconvenient acquaintance I thought I knew, the friend I learned to use to my advantage… he’s a predator, and he’d been waiting for something with substance to bite in to.
I’ve had a headache since I was 14. It’s not always a life-halting headache, typically it’s just a dull discomfort. If I tell you I have a headache, it means I’m hitting a 6+ on the pain scale, anything under a 6 for pain isn’t worth mentioning. My baseline hovers around a 2-3, I don’t actually know what having no pain feels like, I can’t remember. It’s an ‘everything’ condition. Some days it’s a generalized “everything just aches”, some days it seems to centralize in one spot. Sometimes it doesn’t manifest itself as pain, as much as shows inabilities of my body to function ‘normally.’ From dry eyes to nephropathy, from brain fog to fatigue, from heightened senses to flu-like symptoms we don’t need to get into. The diagnosis is Fibromyalgia, but really, it’s just part of being me. I don’t really know life any differently. And unless you’re married to me, you don’t hear me talk about it much, most people forget I have it. When asked what it feels like, the only way I know to describe Fibromyalgia is to tell them it feels like you’re coming down with the flu. You’re not completely sick just yet, but you know it’s happening. Those 12 hours prior- that ‘run down, can’t get comfortable’, achy feeling you have. You’re off. It’s coming. But you’re not yet to the point where you’re debating Tylenol and tea vs. writing your will. Those 12 hours before, that’s just my normal. I have good days; days I probably feel like everyone else, and I have bad days; days that most people would call in sick to work and hop on tele-doc to make a series of appointments for blood work and specialists swing by Urgent care to check vitals and make a plea for a narcotic. On those days, I take a handful of Advil, pour some coffee on it, and close my office door while I work.
But, I’m not writing this to gain pity or even attention to the cause. The last thing I ever want in life is pity. I don’t need it. The cause just is what it is, you learn to handle it, you learn how much coffee, how much Advil, how much sleep you need, and when. You learn what is likely to cause a spike, and you work around it. You learn to pay attention to the small things, the shifts in how you feel. You take note of what changes in the environment, diet, medications there may have been. You learn to do this only after years of searching, after years of doctors and blood work and pills and experimental treatments. You learn to do this when none of that works. You learn when the 10th doctor tells you that whatever ailment of the day you’re seeing him for isn’t severe enough to address and piecing the ailments together isn’t really ‘a thing we do’ in western medicine. You learn to do this when the last failed doctor tells you he has no more tricks up his sleeve and you should ‘just learn to live with it’. So, you do. You ignore everything they told you, you take the details of each symptom, of each change, and you research, and research, and research. You dive into eastern medicine, and you eliminate things from your diet, and you learn that, no,- giving up gluten doesn’t fix a neurological problem, but sometimes acupuncture or blue-algae pills help. You find things that lessen the intensity, you find ways to shorten the attacks and you just move on with your day, because this is just part of what it is like to be you. You change your mindset, over and over, then change it back for a day or two because you need a moment to be upset about it, then you change it back again. It’s not about ‘fair’. This didn’t “happen to you” this just is. You don’t beat it, but you also don’t let it beat you. Quitting isn’t an option.
I fell rollerblading when I was 14. I hit my tailbone. I got up, brushed it off, and went about my day. A few days later, I turned my head and my neck spasmed, and that was the beginning of a now 23-year headache. I fell rollerblading. Something every kid does, and for me, it triggered fibromyalgia pain. But the more I learn about it, the more I notice how many signs and symptoms I had BEFORE the pain ever started. I was awkward and clumsy, my joints were loose, my eyes were dry. I squinted a lot as a kid, even though I didn’t need glasses until I was a teenager. I had signs of depression at a young age for no specific reason. I cracked every joint in my body that I could, because there was always tension, even when there wasn’t pain. A million little benign signs that didn’t seem to add up to anything. The devil was in the details.
The concerning part about it isn’t the symptoms or the lack of solutions, it’s the fact that no one really knows what causes it. The tests for it are “clinical” you need to check enough boxes on a worksheet, and have enough specialists eliminate other possibilities they can run blood work for, and when everything else comes back negative- “well, I guess it must be this”. After that, they stop looking for a source. I was officially diagnosed after 3 years of appointments and tests and specialists. That was 20 years ago. 20 years ago, they had no answers, and most doctors didn’t believe it was real. It took 3 years to get a ‘non-diagnosis’-diagnoses for a condition half the medical community didn’t believe in. It allowed them to stop looking. Today, they admit it’s real and at least know the pain signals come from an overactive nervous system that travels through your connective tissues. They know that it often has co-morbidity with other autoimmune diseases, although Fibromyalgia isn’t actually an autoimmune disease, they have no idea why.
This year I, ironically, spent Valentine’s morning watching Sawyer’s heartbeat on a screen. It started with a deformity in his ankle bones and knees that bend backward, noticeable at birth. At 3, he had chronic ear-infections that never fully went away, often accompanied by colds and strep. At 4, he got tubes for his ears and an orthopedist and ankle braces. At 5, they finally admitted that two straight years of being sick and fighting strep might be caused by tonsils so large they touch, and gave me a referral to an ENT to remove his tonsils, adenoids and put in the second set of tubes. At 6, I asked about his worsening ankles and his knees and his jaw that bites sideways and causes him pain. They told me to wait, he might outgrow it. At 7, he could pop his shoulders in and out and he was noticeably weaker than other kids his age. We had a new pediatrician that year, he finally agreed that there were too many “details” to ignore. He sent me to a geneticist to have him evaluated for a connective tissue disorder. I found out that we have some family history of Ehlers Danlos Syndrome (EDS), and he, and I, check a lot of boxes. I did my research. He came with an hour of questions and a worksheet and measured how far he can bend this way and that. He studied his skin, his nails, his height. There is no genetic test for the hyper flexibility version of EDS. Just a worksheet and professional opinion. He checked 4/5 boxes needed for a diagnosis, the one missing was ‘immediate’ family history. I wasn’t diagnosed with HEDS. HEDS can affect all of the connective tissues in your body, not just your joints, which means, his eyes, his heart, his lungs, his colon, his spleen, his blood vessels- all on the list of places that could have a “weak spot” and cause an aneurysm at any point. He gave us a referral for an ophthalmologist and an EKG – the eyes and the heart are the most common. If those are clear, he should be ok… for now. A week later we went in for his eyes, then his heart, and a week after that, we got a call that they were ok. the Ehlers Danlos Diagnosis is ‘inconclusive’ and for now, he’s going to label it as “Generalized Hyperflexibility Spectrum Disorder”. He scheduled PT and gave a list of things he’s not allowed to do anymore to avoid injury.
This was supposed to be good news. And to everyone else who’s never been through it, it was. But, I already know there’s more to this than hyper-flexible joints. I see it in his skin, I see it in the way his eyes are always dry and he flexes his face in an effort to relieve the tension in his jaw. I see it in the pain he has in his legs and back. I see it in the way a skinned knee takes forever to heal and how easily he scars. I see it in all of these small signs that were just not quite severe enough to check a box, but the number of signs that were near misses didn’t seem to matter. The devil is in the details.
So, we forced him to choke down bone broth, he hated, to add collagen to his diet, until he heard the doctor tell me he didn’t think that would matter, and now refuses. We got proper orthotics for his shoes that help ease the pain on his knees, and we work on building muscles in an attempt to take the pressure off his joints. He gave up monkey bars, and I watch to make sure he doesn’t rough house with his friends in any way that can dislocate a shoulder. I forced him to learn to swim the right way this summer in an effort to give him something athletic that he not only can do without risk but should help take the pain away in the long run.
I pushed him hard during baseball practice, despite his lack of interest to show him that he can’t give up when something is hard and that quitting isn’t really an option. I stood there and made him finish practicing his piano, allowing breaks, but never eliminating the overall time, when his wrists hurt. Because quitting won’t make it go away. To anyone watching, I seemed mean. Who cares if he’s not a baseball player? If his wrists hurt- why does he need to play the piano? I was hard on him this year. No mercy. And, for everything in me as his mom that wants to make every exception for him, and for the child in me that remembers what it feels like to be uncomfortable and want to be told I could sit it out, I know that letting him use the pain as an excuse is something the world will never do.
This year, he looked at me and asked “why is everything different about me?” and I had to tell him that he’s not different, he’s like me. I watched him limp in from the outfield and burst into tears in the car because the coach told him to ‘hustle’ when he simply couldn’t ‘hustle’. The coach didn’t know something hurt, he looked OK to anyone that doesn’t know what it looks like when you’re trying to fake it. I spent nights rubbing his back with peppermint oil and stretching his hamstrings for him and teaching him how to position pillows to help avoid stress on trigger points. I watched him get mad and tell me how much he ‘hates his stupid joints’ when he was told he couldn’t play with the other kids on the jungle gym. I watched him get accustomed to pain that he now has his own measurement of when its ‘bad enough’ for Advil and when he knows he can just ‘handle it’, and he toughs it out most of the time.
This year he needed glasses and physical therapy, and he saw what his heart looks like on the inside. This year he noticed that he can’t keep up with the other boys physically and that some days, just sitting in a desk chair too long means your hips hurt at the end of the day, or that losing a glove in winter has greater consequences than cold hands, as he battled eczema so bad it bled. This year, reality hit, and she has a mean right hook.
I parent him differently now. I lecture him on controlling his reactions and coach him on taking a minute to assess how he feels and ask himself why he might suddenly be crabby because at 8, he doesn’t always know when he’s hungry or tired. He can’t always tell because he doesn’t really know what it feels like to feel ‘good’. I watch how he moves, I watch what natural adjustments he makes, I check on him in the middle of the night if he had a headache that day to make sure he’s breathing. I don’t give in, I make him redo work if I think he has half-assed it. I’m more likely to let him stay home if he says he doesn’t feel well, but on the days that he feels fine, I require 120%. I don’t allow him to be lazy, because quitting isn’t an option and success is in knowing that on a bad day, his 120% will be everyone else’s 60%, so on his good days, his 120% will be everyone else’s 240% – and those days he will outshine them all. Understanding that is how he will keep up. It’s how he will be allowed a bad day without major consequences. It’s how his bad days will be fewer than his good ones. Laziness leads to quitting. Quitting isn’t an option.
At the end of the day, the predator whispering in my ear at night isn’t whispering about pain management or EKG results, he knows I know how to handle that. It’s reminding me of what quitting for people like us could mean. It’s reminding me what the depression feels like, it’s reminding me that quitting depression doesn’t always equal thriving. He’s whispering the details that need to be taught, the details that need to be observed, the advocacy that he will need to ensure the details aren’t overlooked. Because the devil is in the details.
Sawyer,
This year sucked. There’s no eloquent way to put it. From an unpleasant first grade teacher to a doctor’s appointments and quarantine, you were handed a heavy load, and I added to it with lectures and re-dos and correction. And for the fact that your year was so hard, I am sorry. For the fact that you are built like me; that I am the reason you will spend life carrying more than others, I am so very sorry. To be like me, was the last thing I ever wanted for you. But I am not sorry for how hard I was on you this year, for I would rather teach you how to face the world by facing me first. I would rather you learn the value of work ethic now, so you have it to rely on during the hard days later. I would rather you be mad at me for being harsh today than mad at the world for it at 20. Because at the end of the day, I will be there to tell you it will be ok, that you can find a way to work through or around anything life hands you. I will be there to advocate and comfort and remind you that there is no such thing as “normal” and that being built differently will make you stronger. There will come a time when you realize just how much different your perspective on life is than others, and that will stem from facing daily challenges others may not have to. There will be a day that you realize you would change the pain, but not the journey because the journey offered you an appreciation for life and a book of wisdom you wouldn’t otherwise have. Until that day, and after, I will be there to check for the details you may overlook, and endlessly attempt to teach you how to notice them, in every effort to ensure that the devil never crawls into bed with you and begins to whisper.
My wish for you this year is that you remain as happy throughout your life as you are at 8, and that no matter what life hands you, your laugh stays as strong as your will to conquer it. For if you laugh when the devil’s eyes go dark, he will never follow you to bed, and you will never lose the battle.
Happy 8th Birthday Peanut, I simply couldn’t love you more.
-Mom
“…When the Devil finished Johnny said, Well, you’re pretty good, old son
But sit down in that chair right there, And let me show you how it’s done…”
– The Devil Went Down to Georgia, Emerson Drive.
Enjoy Life; Eat Candy 