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.
Per me sei uno stile di vita, dato che risali a una ventina d'anni fa e rimarrai sempre in famiglia. Sei arrivata a dirci che le relazioni sono difficili, non sentiamo e pensiamo e agiamo tutti nello stesso modo. Non abbiamo tutti gli stessi gusti. Ognuno di noi, per quanto possa essere simile, non è uguale. Caro Autismo, un grazie perché hai aggiunto alla mia vita il rispetto delle diversità dell'individuo.
Sorella, Femmina, 31
Che strano darti un nome, come fossi una figlia...Una gravidanza che dura da 23 anni, con “parti” multipli - interventi chirurgici ripetuti - per portarti fuori e lasciare il mio ventre libero. E cure ormonali che fanno diventare molli nel corpo e nell’animo, e dolori, tanti, talora insopportabili. Da poco qualcuno ha iniziato a capire che sei una malattia invalidante, ma chi ti conosce, lo sapeva da tempo. Ricordo ancora la prima volta che mi parlarono di te come “nodi cioccolato”, dando l’illusione che fossi simpatica! Sei, invece, aggressiva, insensibile, prepotente, vendicativa... mi hai portato via alcune cose tra cui il sogno di un figlio e la sicurezza di provare piacere nella sessualità. Con te come terza incomoda, il sesso è una slot machine. E mi fai paura... perché cresci in modo subdolo, non si sa mai dove potresti moltiplicarti e infiltrarti, cosa ti inventerai per sciupare gli attimi. Sei una malattia cronica che fa stare connessi al presente, che fa godere di momenti in cui ti assopisci e imparare a rispettare ogni occasione in cui il dolore è assente. Sebbene io abbia scelto di farti dormire, con una sorta di menopausa forzata, riesci ancora a pulsare, pungere, picchiare, quando ti sembra che io ti abbia dimenticata. È proprio vero, sei come una figlia che chiede attenzione. E dando attenzione a te... be, ho imparato a darne a me.
Questo è il dettaglio per cui ti ringrazio. E perché mi hai mostrato, con la tua prepotenza e le invasioni sprezzanti, come non voglio essere.
Alla gratitudine bastano poche parole... Grazie, diagnosi, per essere arrivata in tempo.
CONTEXT: Polio is caused by a human enterovirus called the poliovirus. The virus is most often spread by the faecal-oral route. Poliovirus enters through the mouth and multiplies in the intestine. Infected individuals shed the virus into the environment for several weeks, where it can spread rapidly through a community, especially in areas of poor sanitation.
In the early 20th century, polio was one of the most feared diseases in industrialized countries, paralyzing hundreds of thousands of children every year. Soon after the introduction of effective vaccines in the 1950s and 1960s, polio was brought under control and practically eliminated as a public health problem in these countries, including the United States. It took somewhat longer for polio to be recognized as a major problem in developing countries, however. In 1988, when the Global Polio Eradication Initiative began, polio paralyzed more than 1000 children worldwide every day. Since then, more than 2.5 billion children have been immunized against polio thanks to the cooperation of more than 200 countries and 20 million volunteers, backed by an international investment of more than US$ 11 billion.
Today, there are only 3 endemic countries: Afghanistan, Nigeria and Pakistan. Until poliovirus transmission is interrupted in these countries, all countries remain at risk of importation of polio, especially vulnerable ‘outbreak countries’ with weak public health and immunization services and travel or trade links to endemic countries. Somalia, where this writer was born, and Kenya – where she proceeded to live in a refugee camp until the age of nine; are two commonly identified outbreak countries.
Dear My Dahhhling Girl: Polio
Sometimes I wish I could punch you in the face - my body is perplexed by the dependence of leaning on a crutch. This dependence has messed up my physical structure (poor posture, a need for acupuncture adjustment and deep massage to relieve tensed muscles); all of which I’m working toward. I can’t find the right words to describe how limiting being on crutches and having to wear a 1.5 lb brace and 2 lb lift shoe - is… I ask myself: Without you, WHAT SORT OF PERSON MIGHT I HAVE BEEN? I don’t know WHO, WHAT or WHERE I could have ended up if it weren’t for you. I do know, though, the person I am today and I’ve grown to LOVE and ADMIRE her :)
Let’s explore what I think I might have been if it wasn’t for you - my girl, Polio. Maybe, more judgmental with people and situations? Impatient with people and situations? Unaware of cruciality - of a second chance to life? Less mature, due to the absence of life changing, permanent physical limitations? Unappreciative of good days? Perhaps, I wouldn’t even know what ‘good days’ are, because everyday can seem like a struggle with life’s little unexpected stumbles..?
Without you in my life, I might have grown up in my home country – Somalia. My family’s first reason for coming to the States was, after all, to FREE me from you. I might have been a trophy wife of a man with significant social status; who could have been emotionally abusive… Perhaps I’d have been the bearer of 6+ offspring? A woman without a strong will? A pretty girl, who just wants to please everybody?? :( Pardon the question marks - I am just not sure of the person I truly might have been, if it wasn’t for you – my girl, Polio… Perhaps, I’d have hiked from Mexico to Canada if I’d managed not to contract you. Perhaps I would be a serial-camper - an outdoors-WO-man? Even better, I’d have taken part in a Dancing With The Stars competition or even could have been one of Beyonce’s back up dancers? Own a dance studio? Be a household dance instructor?? (I clearly long to dance - freely - free dance :)
Fast forward to now – the person that I believe you have helped craft: I am resilient, because I feel it in my gut that I have a purpose for this life of mine. Otherwise, you might have taken my life, just as you have taken the lives of so many other children in third world countries. I can’t treat this fact with mediocrity! I choose redemption and conviction of a belief system that cultivates daily my strength and strengthens my weakness, along with the mindset that yesterday’s shortcoming, doesn’t set the tone for today’s goals and absolutely should not interfere with what can be accomplished today.
I’m grateful for you, although you stunted the growth of my leg and confined me to a single crutch, I know life would have been much hardER to cope with, if I was confined to a wheelchair with limited mobility and access to my favorite bars and restaurants (many of which are NOT wheelchair accessible). I also consider myself to be less judgmental on the SELF and others, because you helped me to learn to accept myself - my strengths, my weaknesses, my everything. The good and the bad. .It taught me to meet people where they are at in their own personal journeys.
Thanks to you, I’ve become a seeker of wisdom on self-sufficiency. Determined to be independent - not only in physical function, but of the expectations of others. Standards of society don’t apply to me, I refuse to enforce expectations. I think that you primed me, Polio - I’ve always felt more mature than my peers. I consider myself to be impeccably adaptable, which is probably rooted in my skills to accept and meet myself where I’m at. I am selective with the type of people I bring into my life, the types of conversations I participate in, the types of books I read, the type of music I listen to, the type of food I eat, the type of water and liquid I take into my body, and the type of environment I reside in - all of which are probably influenced by you. I choose to exercise my options because I’ve promised my physical body that I will exercise huge discipline to bring only joy and wisdom into this life that we share... I will honor and protect this body of mine with you at my side - whatever it takes.
Female, Age 30
Poliovirus with Foot drop
Wow it’s been a year and you still do a great job of ruining - and making me feel terrible - almost every day of my life. Why can’t you just leave my brain and leave me alone? I guess that is too much to ask considering you are used to consuming my life no matter what.
Life with you has changed me for the better and to others for the worse. I’ve been told that you are common in lots of people, but honestly - I don’t think so. I have yet to meet another person on this planet that has to put up with you like I do. That day would be amazing! Being able to relate to someone who experiences the same things I do because of you…
I don’t exactly blame you for anything, though, because what’s the point because its not worth the energy. I do hold you responsible for most of my bad days, my incredibly painful thoughts, and my reactions during those moments that I seem to lose control. Can’t you just hide somewhere deep inside where nobody else knows and it is not obvious that you’ve got such control?? I guess you can’t…
Let’s go back about a year and a half - the first time I heard your name. I was relieved and confused to know you. Finally, figuring out it wasn’t just depression or anxiety; your diagnosis made me feel like I had more control by giving me a chance to learn and research more about you and try to find things out for myself that might help. Unfortunately, though, all of the research I’ve done to understand you hasn’t felt helpful. Most sites say things like “you’re incurable” or “BPD is a chronic illness”. Leading me to believe that I will have to suffer you forever… I don’t know who to believe (researchers or therapists) or what outcomes to expect!
All I know is that I have you in my brain 24/7 without any relief, except when I can figure out how to use my own energy to create distraction. I wish all the questions people asked me, you could answer for yourself. Why are you so tired? Why don’t you just get up and do something? Why don’t you focus on the positives instead of the negatives? Can you answer all the questions, BPD?? I didn’t think so, because you’re an illness and don’t have a voice, which is extremely sad...
To be honest, this world would be much more understanding if each mental illness had a voice to share. I often think why it had to be me out of everyone in my entire family and all the people I know. Why couldn’t it have been something else or something not at all? The fact is that I have just gotten used to feeling down, wanting to self-harm and hurt others; ball up and cry, operate with less motivation and energy, and under more and more stress/anxiety over trivial things. In daily life I might appear like I’m making it but not without great strength…
I thought you were supposed to give me some hope through this journey by at least telling me there was a cure and/or you were more common than I thought. I guess that was a naive assumption...In ways you have caused me to hate most people. You have convinced me to only trust certain people - not everyone, for the most part. I guess that’s a good thing? But, considering the pain you’d have me endure, there should be some prize I win for just putting up with you. Tell me BPD, what is the ultimate prize I have been waiting for? Is there really relief from you out there, or is that just what people believe will happen if I don’t give up??
My life has forever changed because of you. Some parts I regret and others I don’t. When do you think you can give me a break? I am beginning to think never or, at least, not anytime soon…
All I wish is that someday you will make me realize I am not the only one; because I know that for sure, but I often feel like I am… One thing you could also do for me is to reveal yourself to the world. Advocate for those that have you living in their brains. Let others realize that you do exist and we are not just making things up. Help others understand that it’s you who messes with our brains - it’s not just us. If I had one wish that would be it! Just to be able to help others understand that you exist and those who struggle and fight against you are being real - not fake…
I am not mad at you, BPD, I don’t even hate you because you’re an illness of the brain, but daily life with you is often a struggle just like with people I have daily contact with. BPD, I thank you for at least giving me some purpose in my life - allowing me to educate others on the subject and sharing my personal experiences with them. It’s not all bad I promise. I just want you to know that even though each day is technically a new day, it isn’t with you, despite the fact that I wish it were… I thank you for shaping me into the person I am today despite what others think. That’s one thing I can say with full honesty.
Female, Age 18
Borderline Personality Disorder, PTSD, ADHD, General/Social Anxiety, Major Depression
I just want you to know I hate you. I felt the need to express my feelings so you can really understand what I think about you. I have been holding this in for years. Just a few months ago I started dealing with a few breakthroughs in my Life that have been helping me live a better Life everyday. I am a professional procrastinator and the more I put this off, the better the chance I will never end up telling you what really is on my mind.
First of all, let me just reiterate, I passionately hate you. Actually I despise you so much that I have not actually learned a word to explain the frustration and negativity I have toward you.
Everyday I am forced to give you precious time and attention that I much rather be doing something else with. I did not actually want to meet you. I had no plans of ever scheduling an appointment or taking the time to hear your name. You existed in the world around me but I chose to avoid you like the plague. And yet everyday you continue to stab me with needles like I forgot you were there. You put a whole new meaning to, “you are just going to feel a little pinch.”
You have convinced the world about being this hereditary culture curse that you just get because someone in your family gets. That is a flat out lie. Unfortunately you have educated the world so much that most people can’t and choose not to see health any other way because, “it runs in the family”.
Fortunately for me, I went to school and I paid attention. Fortunately for me, I do my own research on you punk. Fortunately for me, I am headstrong and know if you gave me type 2 I would have won that battle way too quickly.
Unfortunately for me, I have not yet figured out the key to unlock this autoimmune disease that you have infected my body with. Unfortunately for me, tackling type 1 isn’t as enjoyable.
Without controlling almost every aspect of my life, it is extremely difficult to control your moods on any given day. Some days you ain’t nothin’ but a peanut, other days I can’t budge you with a shotgun. Some days you have me forgetting you’re even there, other days you’re all I think about.
Mr. D, you really know how to mess up some of life’s greatest moments..
Remember that time at the gym when I was really in the groove and you just decided to drop my sugar extremely fast and extremely low? Or what about those nights where you ruin my peaceful, restful, and much needed sleep in a frantic panic of sweat? Remember those nights where you held me in a near-coma and if it is not for my wife I wonder if I would ever wake up again? Remember that Sports Chiropractic exam, which was very important to me, and you interrupted my ability to think two hours into the test? Or what about those times when I am in the middle of patient hours and suddenly turn pale and weak? Remember when I first left the hospital and mom had to pull over so I can almost unconsciously puke in the snow? Or what about New Years a few years back when my wife had to force feed me Nature Valley bars because I was unresponsive?
Honestly, Mr. D, I do not think I can ever forgive you for what you have done to me. You make me feel vulnerable, you make me feel weak, you know just how to make me lose all my drive and desire to stand upright. If I could see you face to face the burning ball in my gut would probably make me curl and vomit at just the thought of how I feel about you.
Some people can take advantage of me for a short period of time. But eventually enough is enough and I will put my foot down. Mr. D, I am no longer scared of you. You do not stop me from anything. You will not stop me from fulfilling my dream and reaching my destiny. You are not even a worry to me anymore. I actually forgive you for being such a piece of shit to millions of people all around me. I think you are quite sly in how you manipulate minds, medicine, and absolutely terrorize this beautiful experience we call Life.
You hold nothing against me, I am letting you go because you no longer mean anything to me.
I forgive you for destroying my father’s life. I forgive you for the hurt I have seen in his eyes going through all these scary moments. I forgive you for the fear you have put on my entire family’s mind.
When I take a step back, you are actually not a peanut, you are smaller than that. When I step back and really look at who you are, I freeze, I blank out.
I actually lose my breathe because it hits me. It doesn’t hit me, it knocks me off my feet. It stuns me to a motionless and speechless blur where the last 10 years flashes before me and I can’t help but say, thank you…
Thank you for making me unstoppable.
Thank you for making me strong.
Thank you for making me tougher.
Thank you for making me smarter.
Thank you for pushing me to become a doctor.
Thank you for changing my life for the better.
Thank you for teaching me what health is and why it is important.
Thank you for keeping me on top of taking care of myself.
Thank you for the Life lessons you have instilled on your journey.
Thank you for the people you have brought in my life.
Thank you for secretly being one of the best things that has happened to me.
Thank you for pushing me to be a better person everyday.
Thank you for opening my eyes to the world around me.
Thank you for letting me use you as a platform to change the world.
Thank you for helping me relate to millions of people.
Thank you for leading me to competitive strength sports.
Thank you for putting this drive in me to Inspire to Motivate.
Thank you for making me dream.
Thank you for pushing me to chase MY dream.
Thank you for changing my complete perspective.
Thank you for putting a meaning to live.
Male, Age 30
Diabetes, Type I
**To speak with this author directly, please contact Dr. Edward C. Camacho at email@example.com
I hate you. I hate you for what you’ve done & continue to do. I hate you for who you’ve hurt & continue to hurt. I hate you because you are you – an invisible weighted cloak; an off-radar, black storm cloud; a high-frequency cry for help that most humans cannot hear; a mythical diagnosis… Your elusive essence is what upsets me the most! Why me? Why them?? Why only a select few???
You first appeared in early adolescence – I was only in middle school and in the throws of puberty. My developmental state & the particular life events that forced me to face my own mortality at too early an age caused the lot of us to believe that you were ‘circumstantial’.
If only I… improved my physical state of health; changed schools; made the ‘right’ friends; built a stellar college resume; had a boyfriend; got rid of my acne; got reconstructive surgery; was happier with my appearance; got into the ‘right’ sorority; partied harder; took more risks; did more traveling; went to a ‘better’ college; had ‘better’ friends; put my attention elsewhere; was more selfless; was able to help more people; was able to save more money; had a ‘better’ job; moved someplace else; was closer to the one I loved; was dating someone else all together; invested in counseling; found the ‘right’ counselor; invested in self-help; worked harder at self-help; invested in supplemental healthcare; admitted my mistakes; figured out how to be a ‘better’ person… If only I changed , my life would feel better; & you would be gone! Or, so I thought… and, at times, still like to believe.
The sad truth is that most folks that know me don’t really know me, because they don’t know you. If they did, they might run the other way! You’re wrought with stigma. You’re often seen as the result of a weak will or character deficit. Those of us that claim you are made to defend your very existence, so as not to be branded by our inability to independently manage you – to simply ‘get over it’; ‘look on the bright side’; ‘stop the melodrama’; ‘suck it up!’
Good thing I know how to keep you hidden or (at least) how to disguise you. You live behind the masks that I wear & the anger I have come to wield. I’ve worked hard to prevent you from ruining my reputation, yet, your very nature oftentimes prevents me from being seen & heard. You encourage isolation & withdrawal, self-doubt & self-harm. You feed a vicious cycle that, in turn, feeds you:
(FEELING) You cause me to feel sad & (ultimately) hopeless. (THOUGHT) You fill my mind with doubtful thoughts - ‘What’s wrong with me? My life is horrible. I can’t stand feeling this way!’ (ACTION) You encourage me to stay in bed, distract, numb, & avoid all that requires effort. Under the spell of this cognitive-behavioral catch 22, my brain chemistry worsens; I’ve got even fewer endorphins in my court. So, this downward spiral perpetuates: (FEELING) I am genuinely fatigued - feeling run down & lacking the energy necessary to invest in self-care. I’m irritable, confused & ashamed. (THOUGHT) I reason, ‘Will I ever feel any better?? This is hopeless…’ (ACTION) I keep to myself. I skip meals or binge on unhealthy foods. I’m largely sedentary. I discontinue efforts toward a wholehearted life & aim to stay numb… Work performance suffers; relationships suffer; self-image suffers; biochemistry suffers yet, you thrive!
The worst part about life with you is that despite all of this insight – all of the logical solutions to minimizing your effects, not to mention the degree in psychology I went in search of – you have literally infiltrated my mind & my body. You have reinforced unhelpful schemas & harmful behaviors for years on end. You’ve been a part of my life for so long, in fact, I fear that you truly have influenced my character & my will. You’ve certainly seized my idealism & rose-colored glasses…
Depression, hear me when I profess that I will never give-up the only life I’m certain to have as a result of the garbage you put in my mind’s eye, nor will I allow your physical weight to keep me down & out. I would never give you an excuse to take host inside of those that my suicide might harm, because I hate you. I hate you for all that you’ve done & all that you do; and I refuse to let evil prevail.
Female, Age 35
Clinical Depression, among other things...
You came into my life when I was only 18. I was young and totally unaware of all the trouble you would cause me. All I knew at first was that my periods hurt, a lot. Family and friends thought that I was just exaggerating my level of discomfort. But, somehow, I knew that this was more painful than it should be.
This cycle of pain went on monthly until it became too much. I was doubled over in pain, completely crippled by lower abdominal pain when my mom finally took me to the emergency room. She finally believed that this had to be something more.
They did all kinds of scans to find out what you were. They found a cyst, caused by you, the size of a lemon on my left ovary; gave me pain pills; and told me to see a reproductive specialist, which I did. When the OB-GYN came into the room, he began to explain the differences in types of ovarian cysts - what causes them, what they may or may not be filled with, and explained that 90% of the time they were harmless, and the body would naturally reabsorb them. I asked him what about the other 10 %? That was the moment I heard your name for the very first time. He said, that in rare cases, women have a condition called Endometriosis, which is characterized by painful periods and painful intercourse, black-blood- filled-cysts, and eventually
infertility. He explained that the only way to find out which percentile (I felt like a statistic) I fit into, was to rupture the cyst, drain it, and examine what came out.
Deep down I knew that this wasn’t normal pain. I already knew that it was you...
I got into the female examination position. He put on gloves and grasped a 6-inch needle with tubing attached to the end and some sort of collection device. Your unforgettable black blood slowly drained out. I wanted to cry, I wanted to get up and leave, but I was still in a compromised position. I remember thinking about all the things I had been experiencing for months - they were exactly what the doctor described as your traits.
You made me never want to have sex. You made every period the worst week of my life. You made me dependent on pain pills for periods of time. You made me doubt whether I would ever be able to have children of my own. You ultimately made me doubt my woman-hood when the doctors told me that the only affective “cure” was to have my entire reproductive system removed from my body.
I was confused by you. I was hurt by you. You made everything about being a teenage girl incredibly more difficult. Periods were excruciatingly painful, I had to have surgeries to remove blood filled cysts, I was told that I was most likely infertile anyway and the best way to move forward from here was to have a complete hysterectomy.
I had never been so confused. An 18 year old female having her entire reproductive system removed seemed to be too much. It was too drastic, too severe. I was realizing that my desire to be a mother was being taken from me, and it was your fault.
Despite these doctors “infinite wisdom” on what was “best for me” I decided to continue in this crazy cycle of pain. They put me on birth control which helped the pain to a small degree, but I was NOT going to have a hysterectomy. I made a choice to live with you, take my chances, and hope that the doctors were wrong about the infertility issue.
I would go back and forth in my head over the next 10 YEARS on whether I had made the right choice by keeping my uterus and ovaries. I never got pregnant, never even a possibility. I began to believe that I was infertile and there was no hope. I re-considered my choice to not have a hysterectomy so many times, all because of the doubt and fear that you instilled in me. BUT, last year - right after thanksgiving - a miracle happened: I became pregnant! I can feel my little miracle kicking inside my belly as I write this letter to you, now. Maybe all the suffering was worth it. I still have you, you will always be with me, but fear of you doesn’t plague me anymore.
Female, Age 30
Endometriosis, Cirrhosis the Liver - Stage 4;
Chron's Disease, Bipolar Disorder