No doubt, you are one powerful creature. You managed to cage an entire country in only a few weeks time! You are a force to be reckoned with & yet, I've been wrestling with this letter to you for weeks.... I have so much to say to you - & about you - it literally hurts! But, this project really isn't about me. It's about a bridge. About bridging the gaps that prevent us from reaching our greatest potential - as individuals AND as pack mates.
Talking to you, COVID-19, helps. It helps me to peel back the layers, so as to maintain perspective; but I’m stuck - too many questions unanswered! Tell me: Have you come for a reason? A force of nature - here & now - to remind us of our place on this planet? Of natural order, itself?? Are you as dangerous as you seem? To what degree shall we work to prevent your transmission & to what end shall our lives remain on hold??
Trying to make sense of the uncertainty & the unknown, I wonder: Is this a test? A trap, maybe? Are you asking that we look closer at our very own (perhaps faulty) neurological wiring? FIGHT, FLIGHT or FREEZE; pull TOGETHER or fall APART – do you know it's in our DNA?? To what degree must we scramble to ensure, now, that we have ‘enough’? Have done ‘enough’?? Asked to keep a safe “social distance” & to evaluate our own risk factors, many worry along a similar thread: What is it that I truly need, now? Who is it that I can earnestly trust? Am I to care for others? Will others care for me??
Perhaps this is – instead – a wish granted. Is this a long sought-after opportunity for respite? The ultimate opportunity for self- & community-care?? With space & time to consider, what is it that I truly long for now that so many things have been placed on hold? Have I managed any sort of newfound appreciation in life? Newfound respect?? Am I called to tie up ‘loose ends’? To repair discord in my relationships?? When the day is done - & if you come for me – will I still wonder about my worth? Am I ‘enough’…?!?
In moments like this, as a counselor & a coach, I am reminded of the gift that is: shared humanity. I am also reminded of our perfectly imperfect human condition, which predisposes each & every one of us to a lifetime of patterned responses triggered by stress: automatic thinking, emotional reactivity & ‘negative’ habits as coping. Brené Brown, PhD. LMSW (another social worker) says, "We can do hard things." We can & will experience suffering, illness, death, & uncertainty; but we can also "rise strong" & "dare greatly." We can do hard things, but first we've got to "show-up" & "be seen". From this, I know: Ruminating in isolation is not enough.
To bridge the gaps that prevent us from knowing our true potential, we’ve got to speak-up & speak-out about our own perfectly imperfect experiences. We’ve got to show courage by disclosing the contents of our minds & of our hearts, so that we can receive empathy & gain perspective in turn. If the aim is to rise strong in your wake, we have to connect with ourselves & with each other – now – while we're in it: caught in your tide & current.s of change. After all, courage is contagious; & (as Brown says) “Every time we choose courage, we make everyone around us a little better & the world – a little braver.”
May this letter serve as an invitation – a call for courage, for authentic relation & for connection in turn; despite quarantine.! Just write. No length or content requirements. No expectations for grandiosity, critical insight or knowledge display. No signature required. Just write. From your heart & about your experience as it unfolds – this is a call for submissions. A call for contribution to this shared blog. Because together, we too are a force to be reckoned with. #Stongertogether #Neveralone. Now, let’s build bridges!
In Service & Sisterhood,
This Blog’s Manager
NOTE & CONTEXT (from the Author): I thought that diagnoses were intended to help those of us in need, by providing resources, support, and proper health care. My experiences, though, suggest the opposite. These labels overshadow a person’s true identity; they can become dehumanizing; they can actually prevent a person from accessing resources, places, and activities that might otherwise be most helpful. Most prevalent among mental health diagnoses, the associated stigma that accompanies the use of medical labels is beyond detrimental - it can actually prevent the healing from occurring, itself. I wrote the poem below in a flurry of anger felt toward this stigma and the lack of support I have battled to make sense of for most of my adult life. Ignorance and bias in not only the general population but also within healthcare, makes it hard to feel safe and supported. The words and actions of others have and continue to impact my ever-changing self-perceptions, which hinge on the incongruent ideas of what these diagnoses mean to others. A diagnosis can be frightening but, also, a relief. My experiences suggest that it’s a complicated mixture of both…
While a list of the diagnoses seen atop my medical charts follows my signature line, I would like to explain three of them now, as the healthcare practitioners assigning them didn’t know much more than I did at the time of diagnosis. Thanks to my own research, here is what I’d like to offer as context:
I was first diagnosed with PTSD back in 1989, when I was 18 years old. Back then, health care practitioners had even less of an understanding as to what this actually meant and how best to treat the whole person. I had a particularly complicated form of the condition and the treatments that they offered then were useless to me. Fortunately, in the last 6 years there has been a surge in public interest on the topic of trauma; more funding, published research for me to read, and the development of empirically supported treatment protocols for me to explore. Scientists and doctors understand the brain better and how trauma affects it. Most seem to agree that PTSD results in a lot of sub-type illnesses (AKA comorbid conditions) and that is a there is a dynamic range to them. Some specialists (but not all) now acknowledge the resultant diagnoses of anxiety disorders, depression, eating disorders, chronic suicidal tendencies, and insomnia. Some understand that physical conditions result, too, like (for me) heart palpitations & tremors, albeit there are many more likely candidates.
C-PTSD (C for ‘Complex’) was added to the DSMV-5 only this year, which gives voice (finally) to the complexity of conditions resultant from exposure to long-term abuse. Not at all specific to soldiers and persons living in warzones, but a condition that can result from sustained &/or repeated exposure to all sorts of trauma (big T and small t-types). This is the dynamic difference between PTSD and C-PTSD: There exists long-term, repeated trauma that creates complexity in mind-body states and given that each individual is entirely unique, the symptoms can manifest very differently in each of us…
(AKA Dissociative Identity Disorder, previously known as Multiple Personality Disorder)
I also carry a diagnosis of DID, whose previous name continues to elicit images of mass murderers, serial killers, people to fear in the minds of most – thanks to movies like Sybil that undermines the curiosity and compassion necessary for an evolved understanding of this delicate condition. Today, most trauma-informed interventionists agree that people with DID were likely traumatized as young children to a point whereby the condition evolved as a means of coping - as a means (for some) of mere survival. Yet, this is new age knowledge and most Americans continue to operate in states of ignorance and out of fear, which breed’s hatred, contempt and biases. Let it be known that many of us lead successful, productive lives with careers and families; operating alongside everyone else. Like me: I have four children and was a Montessori Educator for 20 years. But, unlike most of you, we had childhood trauma and it caused our brains to develop differently - to think differently, too. The trauma that I endured interrupted my development, so my brain did what it needed to do to adapt and to survive. I have a legitimate brain injury as a result of prolonged exposure to trauma. I have different modes of consciousness and emotional reactivity - my thinking process is likely and largely different than yours once I’ve entered into a different ‘dissociative’ frame of mind. I have “spaces “ in my thoughts and in my memories. Functioning as an adult is challenging in these moments, since I am literally thinking like a child – stuck in a developmental state of mind and body. I even write with different handwriting when in these different mind states.
There are statistics and logistics to consider: Only some 20% of people who experience trauma, end up with a diagnosis of PTSD. Twice as many females than males are diagnosed. Doctors don’t know why. Only about 1% are believed to develop DID, but I personally believe it’s more than this because it’s very difficult to identify. Meditation can help. For me, it connects my mind states and retains memory. I also use sticky notes to track myself on a daily basis and make sure I am recalling things. I often admit to having a “fuzzy” memory.
Some people experience complete disconnection or separation from these respective mind states, which makes it impossible to remember what they did in one mind state when operating in a different one. I had complete amnesia about most of my childhood (and respective trauma) for 30 years. It took me a long time to realize that this wasn’t “normal”. Traumatic events experienced in adulthood, however, triggered my brain to recall much of it through what most might call ‘Flashbacks’. I called them “Time Travels” before I knew the term. During this period of my life, I suffered two years of chronic suicidal depression, insomnia, and constant dissociative issues. I am relieved to say I have healed enough – at this point in my life - through trauma therapy to not have suicidal ideations or daily flashbacks, now.
There’s nothing wrong with my personality or a flaw in my identity - or in my identities (plural). My core is not wrong, and I am not a danger to society, nor am I harmful to others. I don’t walk around in a constant state of psychosis, although I have experienced psychosis before. I am not without intelligence, even though I don’t always have connected thoughts or sequential memory. How I think and who I am should matter, just as someone’s diagnosed illness (like diabetes, cancer, heart disease) – matters. Mental illnesses shouldn’t be separated from physical illnesses in the way that we trend towards doing. Your brain and body are intimately connected with one another, which is why my mental health conditions affect my physical health directly. It is my goal to hold my mental & physical health states out in front of me – like a sphere, where I can continue to see my whole self from all angles and perspectives. This is the key ingredient to living in peace with it all…
Fibromyalgia is another very complicated disease with which I live. It has no cure and its cause is largely unknown. People of ANY AGE can acquire it - even children, yet many doctors don’t know anything about it and some (even) refuse to acknowledge its existence! My own doctor doesn’t know what to do to help manage symptoms. She suggests a lot of things and has me taking pain medication, but there’s not a lot of information out there beyond pain management; and pain is only a small part of the actualized condition. It’s not an arthritic condition (although I have that too, which complicates all things in discussion). Many doctors seem to think that it’s an arthritis-related condition, but I’d like to argue otherwise: It’s a neurological illness that directly impacts the nervous system and causes widespread nerve-pain. Some doctors believe it has to do with swelling or inflammation in certain parts of the brain, which may be why it impacts so many things: The body’s ability to regulate temperature; energy levels (causing fatigue); sensory issues; problems with balance (so much so that I was tested for MS at one point); muscle weakness; disruption to executive functioning (attention & memory); swelling all-over; burning sensations and other inexplicable skin pain. It gets in the way of the brain’s ability to recognize pain. It impacts the internal organs, also, making my insides feel “bruised”. The condition impacts my ability to work, to go out, and to be able to do things so many others take for granted. Its symptoms are impacted by the weather, stress, and other environmental factors so go figure – it’s never the same and always changing…
Just as with all chronic conditions, Fibromyalgia impacts the whole person and (inevitably) their families and friends. Compassion and patience are necessary ingredients, which is why I offer this insight AND this heartfelt poetic letter – in the name of justice:
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.
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.
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.