None really diagnosed you, but we’ve lived together for almost my entire life.
I tried to solve you many many times, in various different ways, but no methods ever worked for much time at all. Sometimes you are so intrusive that you lead me to think that you’re a part of me. Aren’t you?
At times I think you’re like a monster, mysterious but always showing up when I least expect it.
I know you’re dependent on me, on my thoughts, my mind, my fragilities. But I’ve not discovered yet how you work. I learnt strategies to manage you, but you still have a strong power over me, and you still hinder me in some circumstances.
We’ve lived together since I was 4 or 5, I think; I can’t remember precisely. I’m not sure about your beginning; my memories are vague, blurry, unclear. I remember in adolescence I couldn’t bring myself to go to bakery and buy a slice of pizza because it was a serious problem to me: I would certainly have blocks of sounds, I couldn’t say what I needed, just because words remained blocked in my mouth. I would go out with friends only if there were friends who helped me in ordering at the restaurant. Actually, though, in adolescence I didn’t have many friends, I couldn’t afford it.
I should be angry with you, Stuttering, but I’m not. I think you have a reason to stay and you’ll lead me to discover it, sooner or later.
But, I don’t think always like this. You make me feel little, unable, insecure - even if I’m very sure of what I’m saying. You destroy my credibility, you know? I can understand why people don’t trust me if and when I tell things stuttering. And for my job, this is not good at all. Fortunately, I believe contents are more important than speech speed, but I think also the contrary when you insinuate yourself overwhelmingly in and through my words. Maybe I should decide on a firmer opinion about this. Maybe when I decide I’ll stop stuttering. Who knows...
I’ve thought many times why I need to stutter, why I carry you around. Sometimes I forget you all together, actually I forgot you in many occasions in the last 8 years during which I did extraordinary things! You are always with me, though - often hampering me - but I’m aware I’m stronger than you. I’ve managed to get many things out of life that you doubted I could have otherwise accomplished.
I can remember a precise moment when I realize I mustn’t be ashamed: I was 18 and enrolled in a public speaking course. My stuttering was terrible, I had to struggle even when saying only a few words to unfamiliar people. Public speaking was both a nightmare and a desire. I wanted to push myself beyond my limit, to grasp the nettle. Flash-forward to the last class, every participant had to present a speech. I had prepared my speech perfectly: well-rehearsed at home with my grandma, my speech sounded beautiful. But, this occurrence is quite “normal”. I don’t hear from you when I feel safe. So, obviously, you didn’t come out until it was time to present my speech in public. I can’t even remember if I managed to say at least the first 3 phrases, but I certainly couldn’t bring the speech to the end. Yet, for the first time in my life I noticed admiration in the eyes of others. After class, we all went out to celebrate and many of them talked to me - asked me things about my life, which made me feel astonished, because in that moment I realized they appreciated me even if I didn’t talk fluently. Until then I’m always left out conversations whenever people realized that I stuttered. I suppose those people thought that I were weird. That moment was very important to me: in that moment I had learnt that I’m worthy of consideration and of esteem, even as a stutterer. Now it sounds so taken for granted, but then it was new for me.
From this perspective, I know you have helped me (and go on helping me) to carefully select people who are worth keeping close. Maybe I used you as a strategy of sorts to identify people I want to keep close, that kind of people who are patient listeners, who like what I’m saying more than how I’m saying it.
Over the years, I have become skilled and understanding why and when you appear. I’ve become good at looking inside of myself to understand you. But there are still periods in my life where I can’t understand you; times when I can’t trust you, because you tend to ruin my life: you’re so intrusive, your speech blocks are too insuperable, my words loose worth, talking becomes too hard, I’m out of breath, I’m tired after saying a single phrase... I risk not saying everything I have to say because of you! You impede me from flourishing.
During these negative periods, I lose pleasure in social interactions, and in some extreme cases, I end up avoiding the people that I care about - even if I hate avoiding them! Despite your exhausting presence, I really enjoy company; I enjoy having conversations, telling people my experiences, sharing my opinions.
As I’ve already said, I know I’m stronger than you. I’ve reached important life goals, I’m happily married and every day I nurture many beautiful projects. Currently, I need to give all of this a try in my job. My job works with words, and I deeply love it. But I’m very scared you make it impossible. So, I need you cut me some slack - now. I deserve it.
Female, Age 27
You have been with me for 20 years now - since I was 14 years old. You are like a snake in the grass, striking when I least expect it. You took me down for the first time when I was just a teenager. There was no accident or trauma. Just a family history that nobody thought would manifest so young. But, over the course of an hour, while I was warming up for a volleyball game; I went from being a carefree kid to being carried out of the gym by my father. And, just like that, you changed my life forever. You caused a teenager to become knowledgeable about pain meds, acupuncture, massage therapy, and the threat of surgery. I started to figure out what 'herniated discs' were, as well as 'spinal stenosis'. One doctor even said that I had the back of an 80 yr old woman - isn’t that what every teenager wants to hear?!?! There was an entire week spent crying at home thinking that I would have to be homeschooled. Then, there were little things like never wearing a backpack agai... not being able to go on amusement park rides like a normal teen. My afternoons were spent at physical therapy rather than after school activities. When I took the SATs for the first time, it was while on serious pain medication - Vicodin. Back then, I’m not sure how much I understood about the dangers of these pain medications. I understood that I shouldn’t abuse them, however, this was all before the opioid crisis and before it made front page news. It wasn’t until I got to college and some girls in my dorm tried to buy them from me that I truly understood...
Fast forward to when I had my first back surgery. A 19 yr old shouldn’t have to deal with that level of pain and fear. I was incredibly lucky that the surgery was successful for a time. After that, like any other snake, you slithered away for a few years. I was happy again, able to live my life, able to ALMOST forget that you existed. And then, out of nowhere, you came back - again with no warning! So, I coped with you, again, for another 4 years. Doing everything I could to keep you at bay - medication, ice, physical therapy, etc. Until finally, 3 months before my wedding, you were so debilitating that I needed another surgery. By that point, you had caused (what I now know is) permanent nerve damage in my right foot and ankle. They call this “partial foot drop.” This later led to a stress fracture in my foot and long-term use of an orthotic brace. I’m ashamed to admit that I was horribly embarrassed of the knee scooter I had to use when my foot was broken - I didn’t want to go out very much in public with it. I continued to have embarrassment over the orthotic and accompanying ugly shoes that it entailed. Let's be honest, I’m a woman and shoes matter!
I didn’t think you could possibly get worse, but last Christmas Eve I ended up in the ER - after collapsing in front of my children due to debilitating pain. You caused me to leave my 18-month-old twins on Christmas Day; to fly home from vacation so that I could be closer to my doctors! A neurosurgeon actually told me not to lift my children out of their cribs... but HOW?! I’m their MOTHER. Because I wasn’t able to pick them up I had to watch them go to others... it BROKE MY HEART. There are no words to describe how angry I was at you for getting in the way of my relationship with my children. Throughout my life, you have created constant battles between the real me and the anger and sadness that slithers around with you. You trigger my anxiety. You are an awful, venomous snake that I would do anything to kill! So, there I was again: Fearful of needing an even worse surgery that would require both a neurosurgeon and a vascular surgeon; that would put me down for 3 months minimum with possible side effects like permanent loss of bladder control, serious vascular issues, etc.
I try to remind myself that you haven’t beaten me. After all, I’ve been able to achieve my goals in life... I have a Master’s degree and a successful career. Even better, I found a man whom I love and we have 2 crazy, funny, exhausting, beautiful children. But, despite my attempts to live in gratitude, the doubt continuously creeps back in... How long will I be able to manage without the next surgery? Will I even be able to walk by the time I’m 50? Will I be able to continue to work? Will I be a burden on my family at some point? Am I already a burden on my family?! Will my kids understand why mommy can’t run with them, pick them up, play sports, go on a boat ride, go on a roller coaster... etc, etc, etc.
And so, the cycle continues. Currently, Back Pain, you are not a snake hiding in the grass, you are fully visible. I have to take medication round the clock to keep you at bay. Each day seems to be a new challenge to overcome but - I’m still here. You have not beaten me. Today, I got to wake up and hugged my children. Today, I chose to be grateful for that. We’ll see what tomorrow brings...
Female, Age 35
Herniated Discs (L4/L5 & L5/S1), Spinal Stenosis
It's rather tough to decide where to direct my anger. I feel like I should be mad at you directly... seizures are pretty scary. In all honesty, though, learning to deal with life as a seizure-prone man (“man” being used loosely - c'mon, no reason this can't be a bit funny) has provided me with a world of experiences that have made me a wiser person. I mean, yea, it's tough losing teeth and breaking bones and having your first driver's license taken away 6 months after you started driving - wondering if I'll be alone during a seizure and choke to death on my own blood and vomit; but that's all whatever... I've come to grips with it! And how many can say they've come to understand their own mortality by the age of 23??
The medication regimen I've been prescribed has been effective, and I'm very lucky to have met wonderful healthcare professionals who really care along the way. For those who are unclear as to what seizures actually are, let me explain: they're just an overload of electrical signals in the brain. Sorta like a computer getting info overloads and shutting off. And, like most medical conditions, they're different for different people. That being said, epilepsy/ seizure medications act as dampeners in the brain in order to slow chemical signals in order to stop/prevent seizures.
Now do me a favor and say it out loud, “I take medication, to save my life (hopefully), and they dampen communication signals in the brain.” Because of these medications, I live in a constant state of fogginess... a mental bog is the metaphor I prefer. I forget things all the time, keeping notes in order to remember things I used to know, such as my parent's birthdays. I'm as “grumpy frumpy” as a sleepy toddler. I sleep 9 hours at a clip, and still desire an hour's sleep midday.
So to restart, Dear Epilepsy... you're ok. But to Keppra and Lamictal... you're really what's draining my life, while also saving it. Gotta go, getting sleepy.
Male, 31 years young
Epilepsy, AVM in Cerebellum
P.S. - Many suggest I should consider medical marijuana as a means to alleviate seizures. I've tried it. It's only makes my fatigue worse... and frankly I'm tired of new age folks badgering me about it. A condition they've learned a lot about by listening for 13 minutes, while I've been working the details out for 13 years. Sorry for that addition. I'm sure I'm just grumpy. Thanks for reading.
Many would say today that if you had to have a birth defect, you would be their choice; as the treatment is without side effects. These days, you require only a pill, such as Levothyroxine, Synthroid, or Armor thyroid, to supplement the thyroid hormone. In pill form, the hormone is simply delivered without a need to suffer the conditions and outcomes that I experienced in early development - without a test to determine the need for treatment. In America, today, most children are checked at birth for this condition and treatment is started immediately if found. Previously, though, those affected were considered ‘mentally retarded’ and did not live very long without a supplement.
At birth the signs of your presence had been masked as my mother supplied me with her thyroid hormone en utero. It was after my birth and at home that the telltale signs appeared. This period prior to treatment created concerns for the doctors and problems for me as there were no long-term study results from which they could provide reliable estimates of outcomes - the thyroid medication had only been in use for approximately 18 months prior to my birth. Without this information, I was diagnosed in childhood but it was difficult for the doctors to tell my parents what they might expect in regards to my potential physical and mental development. From conversations I had with my parents as an adult, I learned that the doctors had delivered low expectations for what I might be able to accomplish on an intellectual level. With inaccurate information, my parents did not expect much from me and my sense of self- worth was respectively low.
I have read over a considerable amount of information on you, CH, and understand that the problems that present themselves as a result of having you vary depending on the amount of time that the condition goes untreated. As a result of delayed treatment and your presence in my life, I developed Atrial Fibrillation and Attention Deficit Disorder (AD/HD), along with Clinical Depression. Fortunately, I do have above average intelligence, which allowed me to obtain a college degree and pursue work in my field of study. Unfortunately, the ADD caused all sorts of problems with my employers over the years and at home.
Furthermore, the numerous blood draws that began in infancy led to a lifetime aversion toward needles. On the positive side, this kept me far away from IV drug use, which became popular in my youth and early adulthood. I have not struggled with drug addiction, as I resented so much having to take a medication every day. Unfortunately, the mean kids in school found out and would tease me saying things like, “Have you taken your pill today?” Furthermore, on the negative side - it made it very difficult to watch, much less assist, my daughter with insulin injections when she was diagnosed with Juvenile Diabetes just after her 14th birthday. I still have a hard time watching needles going into bodies now, even if it’s just a movie.
I am now 66 years old. I am grateful at this stage of my life to be in fairly good health. My support system which includes a loving and knowledgeable partner, loving children, grandchildren, close friends, and informed medical specialists help to keep me in good spirits, most of the time. I realize that I am one of the oldest CH people alive today and feel fortunate to have been provided with the life-saving medication at the near beginning of my life. Yes, it would have been nice if the doctors who were caring for me in my infancy and childhood could have given my parents a more positive prognosis; but it is understandable why they didn’t. Nevertheless, my life has been more full than empty. CH, you have been a pain in the ass to live with, but I suspect that you partnered with me to help teach me many of life’s lessons and for those reasons; I choose to accept your presence. Next life, however, I’d appreciate it if you’d go couple with someone else.
Male, Age 66
Congenital Hypothyroidism, Atrial Fibrillation, AD/HD, Clinical Depression