My Kratom Story

It's necessary to write and share this now, as this natural, non-high-making, safe plant is being aggressively threatened by the FDA. (not sure why the layout is messed up, bear with choppy reading!)

I am a 61-year old counselor/educator whose life was changed considerably after developing three auto-immune diseases (CFIDS and colitis, interstitial cystitis) in the late 90’s, and then tossed into painful disability 14 years ago after two cancers (bladder, colon) whose aggressive treatments resulted in severe pelvic radiation disease. Following that, the diagnosis of fibromyalgia) left me in an ongoing state of serious to severe pain. 

I will live in permanent, worsening pain for the rest of my life. Since 2001, I have necessarily had to take heavy medications in order to live a somewhat tolerable, "normal" life. Though many different medicines have been prescribed to me, my everyday go-to's were Morphine, Gabapentin, Vicodin, and Cymbalta. I also ended up needing sleeping medicines, as narcotic use dependably leads to considerable sleep disturbances.  I never felt truly rested. 

Even though I worked hard at not increasing dosage, I needed to do so a couple of times, and frankly, was frightened to observe the personal, far-reaching effects of long-term narcotic usage. My cognitive abilities became dulled. I also developed a "way" of communicating: I would be in the middle of a sentence, and suddenly simply go completely empty. I would suddenly have no idea what I was saying; all was a big blank. Helping to get me back on track, family and friends became used to having to say to me, "You were talking about _____." This was extremely embarrassing, and it happened approximately every 2-5 minutes while talking. I always played it off, saying, “Oh you know me, my mind is in a zillion places at once!” I regularly felt ashamed.  As a singer,  suddenly forgetting my lyrics on stage was mortifying, and I stopped singing. That was an indescribably serious, disheartening, humiliating loss. 

I also noticed that life seemed to become increasingly "un-handleable." I got fewer and fewer things done, and seemed overwhelmed by a blanket of incapacity -- I found myself sitting, more often than not, in my chair in the living room, trying to carve out some type of a life while feeling dulled, both physically and mentally. I was forced to develop a new identity; the heretofore high-achieving, very active type-A personality no longer described me. This grueling endeavor of self- redefinition has been nothing short of monumental, as it is for all of us who find ourselves disabled, or weakened by physical misfortune.

Respiratory depression is a very serious, and very common side effect of narcotic-taking. Being someone who took dosage seriously, I never took over the prescribed limit, yet on three occasions, I was unconscious and vomiting. Had I been alone, I may not be alive to write this -- indeed, tens of thousands of people in the exact same position lose their lives every year to this accidental overdose scenario. One does not have to be a "strung out junkie" to fall victim to these horrid eventualities. It only takes ONE PILL atop a weakened body to push it over that precious edge. I know; I was almost there, and I did not take more than prescribed doses. 

I will not go into the fact that narcotics are absolutely negative for the body in general; one only need study the boundless information out there. 

Using narcotics, I was unhappy. I was stuck. Once again, I can NOT be without something to address the permanent, severe pain that I have. Disillusioned with the suffocated, truncated life that narcotics-taking made for me, I became depressed. Yes, this result -- robust depression -- is also extremely common in those who find themselves stuck in the same narcotics-dependent  position...having to take these horrid drugs, without any other option.

For years, I had tried all sorts of alternative pain relief remedies without success. Who knows why I decided to try Kratom after hearing about it last November (2014). First, I studied about it, and found, after careful investigation, vendors whom I felt were reputable. Soon after that, I received the powder, and I made capsules, starting the experiment with trepidation. 

KRATOM WORKED. 

There is a lot to know about taking this plant responsibly. Those who only read mainstream news, and imagine obtaining it from local "head-shops" are in for trouble, as 1. it is presented as a dangerous horror, and 2. head shops have been known to sell adulterated, or poor-quailty Kratom.  Misinformation abounds, and unfortunately, the overriding presentation of Kratom as a negative, woe-causing danger is rampant. 

As of December 2014, I have completely stopped taking all prescription medicines for pain, sleep, and depression. The vast nightmare of withdrawals from these drugs further pointed up their toxicity (I have since discovered that several of them have occasioned myriad lawsuits, as manufacturers marketed the drugs in knowledge that they caused considerable harm both while taking them and in leaving them).

I have been returned to LIFE…true, real, active, feeling, full-sentence-producing LIFE…all thanks to Kratom.  I am so deeply thankful for this; I am so amazed by the fact that I am back…I have verve and spark and hope again. In truth, after over a decade of being clouded by needed medicines, I felt that I had, in effect, disappeared. A disconnected shell of me remained, and life was a continuum of days and nights to merely get through, as well as possible. 

As this amazing plant changed my life completely — gave it back to me, I became very involved with the on-line Kratom communities on FaceBook. There are many groups to find — all differing in their professionalism and articulate presentation. For months, I co-administered one such group, and there, found hundreds and hundreds of people whose stories were similar to my own. Bottom line: Kratom is saving and restoring lives of people across all parameters of age and socio-economic position. It is helping junkies come off street drugs. It is helping construction workers who have injured their backs. It has helped the depressed and the anxious. It has helped teachers with Lyme Disease. Nurses with depression. Hairstylists with ruptured discs. Accountants with MS. Cashiers with Lupus. Welders with DDD. 

In short, Kratom is a life-changing remedy for myriad populations.

As of November 2017, I  have been taking Kratom, without pharmaceutical medicine, for 3 years. With exception of the withdrawals from Rx medicines, I have never had ANY negative side effects. It does NOT make one “high,” and it does not ever cause respiratory depression.  Kratom effects every person differently, and to find your perfect blend and dose requires some simple experimentation.  There are several plant strains that have different effects on people’s systems: some is energizing (in a very pleasant, “non-rush” way), others are sedating to some (not to me), and others offer straight-up pain relief.  I stopped taking it at one point several months ago and experienced no bad withdrawals (though some people evidently do).

Finding good information, and then responsibly taking the step to try this plant is the way to go, and should anybody want to do that, they should definitely connect with the reputable sources of information, such as “ilovekratom.com” or the National Kratom Coalition, Inc.(nationalkratomcoalition .org). where lots of essential information and excellent articles can be found.

The thought that should this plant be made illegal, forcing me to return to narcotics, is a nightmare for me. The idea that others assume the position of dictating the influences over the quality of my life (which is the bottom line) is disillusioning and angering. I imagine that the push toward criminalizing this plant is connected to the potential loss to the corrupt, shamelessly money-hungry pharmaceutical industry. 

Please consider this a testimony that refutes the rampant misinformation available regarding Kratom, and please consider adopting an attitude of openness and willingness to see the facts as they are, not as they are ill-presented by a media that is largely bought by the wealthy opponents of all natural healing. Without Kratom, my life would shrink back into a sad scene of simply "getting by.”  And *that* is a slow death.

"I Just Can't Handle It" -- the excuse to be an ass

VULGARITY WARNING

As a bereavement counselor specializing in Mothers who've lost a child, I am wildly passionate about my work. This rant regards bereaved Mothers, but applies to the general culture of ego-driven people, who are crippled, limited, and small.

Vulgarity warning

"...JUST CAN'T HANDLE IT" -- THE BANE OF BEREAVED MOTHERS

"Sorry, I just can’t handle it.” This phrase is one that many bereaved parents hear from “friends” who don’t respond to their experience adequately.

Someone close to me lost a child recently. She is already experiencing the isolation of parental bereavement, one of the loneliest journeys that a human is forced to make.

One of this Mother’s “friends” who knew the son well, just told her that he (the friend) could not handle the child’s death, and that he would have to “delete everything about the boy -- all his pictures, all the memories, all the experiences” ...because this friend "couldn’t handle it.” Can any of you imagine, for a second what this sounds like to a Mom who’s just lost her SON? (I could kill somebody right now.)

I confess that I am extremely passionate, very impatient, and unforgiving about this position. Some think that I am excessively hard. Could I be more loving? Perhaps. Could I try to understand others' difficulties? Yes.

However, we have become a society of whiners, and many of us (I have been guilty of this) have indulged ourselves and our complexes, hangups, traumas, depressions, sensitivities...at the cost of STEPPING up and doing the right thing, for ourselves,and for others. 

Can't handle it? Then you're a shallow person driven by your own ego, and unable to step outside it for a second to --again -- DO THE RIGHT THING.

"Can't handle it?" Then find out how to. Ask. That is, if you care at all. Grow.

But ohh nooooo! In our society, “I just can’t handle it" seems to be the absolutely acceptable excuse to simply disappear, to not show up, to not be present, to say insensitive things, and in general, to be a piece of shit.

"Can't handle it?" I call BULLSHIT. You WON'T handle it. You follow your selfish ego and do whatever feels good and comfy to you. SHALLOW. EMPTY. People like this...are part of this planet's huge problem.

Those who run from it are fooling themselves. In their (guaranteed) dark times, they perhaps will find themselves all alone, too, because of those who "can't handle it."

I do not like "handling it." It is heartbreaking. Nevertheless, I find life incomplete if I do not experience the darkness; if I do not open my world to the reality of pain in life. It is simply the way life on this planet IS. Life guarantees each one of us trauma. It guarantees difficulties and at times, unfair heart-shattering times. It is what life is; it is real.

And that is the stuff of life. If we run from it all, we are escaping REALITY. All because what...we want life to be "fun?" “Positive?"

Fu** off.

Life IS heartbreaking. Dive in. Be real. Enjoy every moment of light and hope. Enjoy every tiny flower and birdsong. Enjoy every minute of friendship, of sunlight, of warm tea in the morning. Because soon enough, you WILL be touched by darkness. And that, too, is real and normal. "Handling" darkness gives a gift of honoring all of life's teeming beauty, in perspective. 

I even detest that phrase “can’t handle it.” I reject it. It screams selfishness and shallow-nothing-person to me. It screams pussy-ego and self-centered uselessness.

I have heard it so many times, as if it were an acceptable excuse to disappear, to not be patient, to not be supportive, to not respond to family and friends in their darkest times. Bereaved Mothers get it from all over. The world does not like to "handle" such inconvenient tragedies.

Bereaved Mothers eat this crap as a staple menu. They lose friends; people simply disappear. After a time. others, who might have even been very accepting, start dropping off as they see that it is not a quick fix. They start becoming frustrated that the grieving parent is not back to her/ his old self. They are not happy about this new person, and even many times say things such as "I want you to get back to normal.” THERE IS NO SUCH THING. 

Some even assume the right to be irritated with the bereaved Mother, insisting she “snap out of it,” “quit wallowing,” and “get moving.” Many suggest that the bereaved Mother does not want to help herself. Telling themselves these invented excuses, they justify their selfishness, their profoundly shallow, crepe-thin “friendship.” It was always about them, one sadly discovers.

It is driven by EGO. They are dissatisfied because you are not what they demand you be.

FU** EACH AND EVERY ONE OF THEM.

Find those precious few who get it, and get that life is chock-full of dark, heavy places, and the more we understand and embrace (not celebrate...simply accept) it, the more our life rings of reality, of passion. of truth.

Many people die completely alone. Many people go through the very worst times of their lives alone...because others "can't handle it."

Bereaved Mothers get a free pass. They are in a place that we will never understand. It is a horror. They — in their stumbling, in their enduring sadness, in their scattered personality and tumbling heart, their inconsistency, their ups and downs, their apparent flakiness…they GET A FREE PASS.

There are occasional exceptions...some people who — due to specific traumas — truly can not handle such things, but in 99% of cases, it is not so. It is simple convenience and selfishness, with complete absence of getting outside the ego, or willingness to do so. UGH.

 MISSCARRIAGE: Here, I will continue with my pissed off rant. Moms who have become bereaved through miscarriage are deeply unacknowledged. They get the super shaft. We also have created a ton of catch phrases to get out of recognizing this profound pain. "Well you can try again." "Well, it wan't meant to be." "God takes those who weren't meant to be born...it's his will" "You really did not get to know this child..." "It could have been so much worse" "This child was not right, and that's why it happened."  People almost are snitty and arrogant in their not acknowledging this special type of bereaved Mother, and she is given very little attention around this. These paltry sentences say one thing: Your grief does not count. It is not as "griefy" as "real" griefs. Buck up. Snap out of it. ARRRRAGUHHHHHHHHHHHHHHHH (infinite "h")

An Opinionated Lament about Women's Discomfort in Acknowledging their Gifts

I grow ever-weary of the limits, torment, endless self-deprecation, body-shaming, insecure pandering, oatmeal-mouthed, whiny women out there. Truly, we complain about "MEN" yet men do the many of the rotten things they do (save rape) because we have allowed them to do so.

I have found that when people -- particularly women -- are asked to name something they are good at, or something that they like/love about themselves, the immediate response is a wiggly, silly, "Uh but I'm not good at stuff," or "I don't know," or "I can't do anything!""God, I can't do that!" Or some other entirely self-negating answer, usually seasoned by a dumb expression on our faces...eye rolling, giggling...

Many feel fine coming right out and saying, "There's nothing." "I can't think of anything." One, this is not accurate, and two, it is a rotten thing to willingly say about yourself. How have we come to utter and think such deeply horrid things to ourselves and to *others!?* All of us have gifts. Can you imagine your children speaking this way about themselves? It would break your hearts. However, you provide them with models to follow every single time you utter shitty words about yourself.

I know...I was the daughter of a (beautiful, deeply, vastly intelligent and talented) Mother who had NO self-love and spoke in the most disrespectful way about herself. It has been a devastating thing, and to learn other ways has taken YEARS. Years to find my own sense of self without the immediate jump to cutting myself down, which was default. I will battle this the rest of my life, but I will NOT continue being a shitty role model for females and males, by willingly adopting this "I am nothing" stance that so many of us are encouraged to take on. I fight it every day, and every day, I feel my spine strengthen and my head raise.

What about DIGNITY? Dignity, a trait and position we would be benefitted by trying to always develop, is corroded and goes straight down the drain when we cut ourselves down. I refuse to live without dignity, and it has nothing to do with looks, money or social position. Some of the poorest people with whom I have been friends, or worked with, have possessed a stable, beautiful humble dignity that so many of us have lost. It has nothing to do with ego.

What about honest, non-ego-driven pride in the things we have developed and accomplished? It doesn't have to be loud horn-tooting -- that's ego, so many way-too-loud women out there screaming about how great they are, also UGH. I refer to the deeper realities, the truths about our beings, beyond the daily games played by attention seekers.

I detest our societally encouraged inclinations to become silly and insecure, like whiny doggies, when we it's suggested to us that we think about our talents, the things that are great about us...or anything else that celebrates the things that make us each the person who we are.

I decided some time back, that I needed to re-discover my dignity, and came to the conclusion that it was disrespectful to the higher powers / God (whatever be your thing) to negate and minimize the gifts we are given due to some absurd concept of self-aggrandizement. I find it ego-driven to feel embarrassed by recognizing our gifts, as though we, and our individual little personalities were solely responsible for our successes and positive experiences.

YES. we have a LOT to do with it. And our work and consciousness in cultivating our gifts is crucial; to be celebrated. However, we all have been born with given talents, given skills, given inclinations toward certain excellent attitudes and practices. Others have been fortunate to live exposed to circumstances that have also given them depth and knowledge. Those are not due to our being hot shit. They are gifts.

Why not honor these gifts by ACKNOWLEDGING them, without ego, without bragging. If we have these gifts, we are fortunate, and we are not necessarily being conceited or arrogant on naming and honoring them.

OK. So. Sermon over.

Question: where do you think your gifts came from? What are they (i.e. what do you love about yourself!?)?

Are there gifts you have that you feel you have not respected fully? What are those?

Memorial Services -- How They are the Coolest Sad Things.

This is the response to a friend who recently expressed that she did not want any type of service in her memory.

I had the same thought. In fact, as I do with everything about which I feel very passionately, I was vehement in my rejection of funeral homes and services. I felt that the services were rather morbid, obligatory dramas that did not at ALL truly respect or reflect the deceased.

My first experiences with such services started when I was 10 (1966), and my grandmother died. After that, my first love (1985) and my Uncle (1987). I hated the stranger's (funeral home's employees) words as they talked about MY person; about heaven, and as they offered "inspirational" readings. 

I hated the stayed, contained rows of polite mourners. I hated the fact that in-and-out, from "x" to "x" hour, we would "pay our respects" by listening to the "stuff," and then go back home. I hated the strange disconnection, the creepy aspect to it all. The odd absence of emotion, the odd protocol followed by us, silently sitting in the room, or softly weeping into a kleenex. Nobody talked at these services. Nobody coaxed out the true memories, the joys the funny things, the stories, the love, the PERSON. It was a walk through an odd hell, in my opinion, and I swore that I would NEVER want a "service."

I found that my own story, one of developing my own beliefs around memorial services, was one I wanted to tell.So, here is my take, and my changed viewpoint regarding memorial services:

I always absolutely refused the idea of a "memorial service," they grossed me out in their dark, *paid-for* vibe...How strange that life places one in the positions we don't necessarily expect...had anyone told me that I would end up being an "end-of-life specialist and grief counselor, I wouldn't have believed it.

With this world that I have come to know so well, I see that a service is something that assuages the shock and isolation of grief over somebody we've lost. In other words, the shock, the unwelcome wound, the slamming removal of someone we love, from our sight and days, is so overwhelming that the possibility of joining with others to feel accompanied in that love, that loss...is invaluable. It is the same motivation that brings people to the streets with flowers and candles after a bombing, for example. That need for union with others who also feel the pain…

Dark, moribund tone does not have to mark these gatherings. In those that I have reaped great love and warmth from, there is a lot of story telling and laughter…oral tradition that is so beautiful, which as a society, we have lost. People also learn a lot about the person they've lost...things they didn't know...extra "pieces" of their loved one that are so yearned-for...("I didn't know that story!") How great to leave with yet more of that person...Openings for sentimentality that we do not allow into our daily routines are so valuable, also (especially men, for their myriad societal inculcations).

(I wrote to my friend--) You are so lovely, I have no doubt whatsoever that your leave-taking would (will) occasion deep pain in many — many who would also feel compelled to and comforted by a gathering of hurting souls. I categorically reject association with funeral homes (though some mortuary owners can be wonderful, and some grieving families can not handle doing it themselves)...this is of the heart, not the wallet.

I do, however, now, understand the comfort that a get together gives…it is not a lugubrious, morbid “wahhhhhhh” ~ it is more of a circle of honor…their love for you, and the honor of carrying that privilege of friendship/ family/ acquaintance. It is affirming in ways beyond the person who’s left. It is also a precious reminder of the circle…it is good for all to be close to this consciousness…the fragility of life and the significance of n-o-w. All in all, I can not say enough about the realization of some type of gathering in honor of a loved one.

The way things go is a personal decision, obviously. I wanted to share my story… from a dyed-in-the-wool service rejector, to someone who finds them to be a beautiful window to LIFE, as there are few things that make us prickle with the idea of life, and its beauty and delicate nature, as does death. In those tender circles, I have found great inspiration, and love deeper than I se otherwise. These services are a gift. Thanks for reminding me of this position…I understand it, and do know several friends who vehemently want NOTHING.

I hope that this is a little window into something that we tend not to like to think about. At the same time, it can be the source of love, comfort, and awakening, such that we do not experience in our everyday lives.

May all have a lovely day, Joana

message from those who've lost a loved one / mensaje de los que han perdido a un ser querido

Lo siguiente es bilingüe / the following is bilingual

Though this refers to bereaved parents, it holds true for all who’ve lost a loved one. Aunque esto se refiere al padre / la madre que ha perdido a un hijo, se aplica a toda persona que ha perdido a un ser querido. 

El mensaje de los padres que han perdido a un hijo está claro: por favor, no olviden a su hijo/ hija! Por favor, pregunta sobre él/ ella. Por favor, acepten que el padre / la madre sea la persona que actualmente ES, sin buscar a la persona de antes. 

The message from bereaved parents is loud and clear: please do not forget their child! Please ask about him/her!  Please accept the parent as s/he is now, without seeking the person who was before.  

Some varied words from bereaved parents:

"I never knew how lonely it would be. People have started to avoid me because they are disappointed that I haven't snapped back to the person I was before. I will never be that person again. People suggest ways to "get better." They want to take me out, and "turn me around." When I can not be the person they hope for, they are let down So many of them have given up because they are not comfortable with who I am now. It is an experience of deep abandonment and loneliness that I could never have expected."

"Nunca me imaginaba la gran soledad que me acosaría. La gente ha empezado a evadirme porque está desilusionada que no me he vuelto en mí; que no soy la misma persona de antes.  Nunca seré esa persona ya.  Sugieren maneras de “mejorarme.” Quieren sacarme de la casa y “voltearme." Cuando no logro ser la persona que esperan ver, se quedan decepcionadas. Tantos ya ni están en mi vida porque no están cómodos con la persona que actualmente soy. Es una experiencia de abandono profundo, y de soledad que nunca me lo pudiera haber esperado. 

---- ---- --- --- --- --- --- --- 

"Nobody talks about my daughter. It's as though she never existed. People think that they are being "respectful" by not "waking the wound." What they don't imagine is that the wound is as awake and alive as ever; forever it will be so. If you asked me about my daughter, you wouldn't be hurting me, you would be *validating* my experience by welcoming conversation about, and honoring the life of my child."

Nadie habla de mi hija. Es como si nunca hubiera existido. Piensan que son “respetuosas" al no “despertar la herida.”  No se dan cuenta de que esta herida está siempre despierta y viva, y siempre lo será. Si me preguntaras sobre mi hija no me estaría haciendo daño -- mas bien estaría validando mi experiencia por invitar conversación de ella, y así honrar su vida.

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"My son was murdered. I belong to a community of bereaved parents, and it helps, but it seems that those who have lost children to violence are even more isolated than the others. Nobody...nobody wants to enter into my world of horror, and the easiest thing is to keep away from me. I want to remember him and talk about him just as does any other parent. I am so, so alone. I never thought it would be like this."

“Mataron a mi hijo. Pertenezco a una comunidad de padres que han perdido a in hijo, y ayuda, pero parece que los que han perdido a un hijo a través de la violencia se quedan hasta más aislados que los otros. Nadie…nadie quiere entrar a mi mundo de horror, y lo más fácil es guardar distancia. Quiero recordar a mi hijo, y hablar de él, tanto como cualquier otro padre. Estoy tan solo. Nunca pensé que iba a ser así."

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 "I had a miscarriage at seven months. I LOST A CHILD. I lost love and hopes and dreams and plans. I lost MY CHILD! So many people have been unexpectedly insensitive, dismissing my grief with words about "trying again," "there's time," and "it was for the best."  The almost screaming absence of validation of my pain, deep and vast, is confounding, and I feel a sense of being lost, not fitting... in my own  house and life and world. I LOST A CHILD."

"Perdí a mi hijo a los siete meses de embarazo. PERDÍ A UN HIJO.  Parece que muchas personas no lo ven así. Perdí amor, esperanza, sueños, y planes. ¡Perdí a MI HIJO! Tantas personas han sido inesperadamente insensibles, descartando mi angustia con palabras de “intentar de nuevo,” “que hay tiempo,” hasta con “es para lo mejor.” La profunda ausencia de una simple validación de mi dolor confunde; experimento una sensación de estar perdida, de no cuadrar, de no caber…siquiera en mi propia casa, en mi vida, en el mundo. PERDÍ A UN HIJO."

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"I am a single Mom whose child died. I do not have other children. It is crucial that the person whom I date understand that I am a MOTHER. That I have a child, who, though not present, is vibrant, ever-present, and beloved. I know what it is like to have waited for, loved, taken care of, fed, dressed, nurtured, and fought for my child. He is a huge part of my life. I want those who get close to me to understand the forever place, dynamic and alive, that my son has in my heart *and in my daily life.* I want them to love my son. If s/he can not comprehend this and act in accordance , a relationship is not possible."

"Soy madre soltera cuyo hijo murió. No tengo otros hijos. Es primordial que la persona con quien salga comprenda que SOY MADRE. Que tengo un hijo, que aunque no esté presente, es vibrante, siempre-presente, y amado. Sé lo que es haber esperado, amado, alimentado, vestido, animado, y batallado por mi hijo. Él es --y siempre será-- una parte enorme de mi vida. Quiero que los que se me acerquen acepten el lugar permanente, dinámico y vivo que ocupa mi hijo en mi corazón y *en mi vida cotidiana.*  Quiero que quieran a mi hijo. Si no puede comprender y actuar de acuerdo con esto, pues una relación no es posible."

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“I lost my daughter over 20 years ago.  Through grueling work, I have learned to live a long life in the wake of her death, but my heart feels her absence with every day; it is a part of my makeup. Nobody ever asks about her any more. Most people assume that it’s a forgotten pain, and that to mention her at this point would be to hurt me further. Sometimes I prefer not to talk about her, because I feel that people don’t seem to understand that though years have passed, her loss cuts to the deepest part of my being.  They don’t seem to respect her life or the extent of my pain. They want to point to the fact that my life has gone well. I hate the fact that she is never mentioned. "

"Perdí a mi hija hace más de 20 años. A duras penas he aprendido a vivir una larga vida en la huella de su pérdida, sin embargo, mi corazón siente su ausencia con cada día; es parte de quien soy. Nadie pregunta por ella ya. La mayoría  piensa que es un dolor olvidado, y que mencionarlo a estas alturas me haría hasta más daño. A veces prefiero no hablar de ella, porque siento que la gente no comprende que aunque hayan pasado años, su pérdida siempre me cortará hasta la parte más hondo de mi ser. Parece que no respetan la vida que ella tenía, ni la extensión de mi dolor. Quieren señalarme el hecho de que a pesar de todo, he vivido una buena vida. Deploro el hecho de que nunca la mencionan."

Talking about My Physical Pain (good, also, for spouses and friends of people who have chronic pain/illness.

Talking about Our Physical Pain 

I co-administrate a FaceBook group in which many participants are chronically ill.  A discouraged member there mentioned that she felt bad because her pain psychologist told her not to talk about her pain.

A *pain psychologist* saying that!? Sheesh. That, in my book, is a prime example of the truth that "you can have the title, but it does not mean that you are decent at your profession." 

Voicing our pain; externalizing it is GOOD, for many reasons. There is a HUGE difference between dwelling; aimless whining, and simply stating the TRUTH. We HURT.

To internalize it, always, is to maintain some of the poison of that thought within...it is a bitter, vile poison that we all know well. 

I detest whiners and complainers and run the other way when confronted by them. 

However -- there are ways and there are ways. My husband Leif and I have developed a certain "pain communication" mode. He asks how I am doing. I tell him. He says, with sympathy, "Ohhh, that is a drag." or "I am sorry that it's that way today." or "Ohhhh, sweetie."   And I say yep, and sometimes *briefly* repeat my same old feelings of frustration. 

THERE. The words are out, they have been said, and I have had acknowledgement from the external world (husband). That is all I am looking for -- to state the hell, to make it true, to proclaim the beast's work. To get it OUT. These short communications are repetitious...I am saying the same things over and over again. Of course, this is because those of us in pain experience the constant fight / disappointment / frustration / sadness ...repetitiously.

Leif, a very black-and-white science guy, did not always understand this need and the dynamic of externalization. He thought, and understandably, that well, I have pain, he is sorry about it, and that is that. He said it once, and he meant it. Why repeat, a million times?  Don't I know that he cares and is sorry? Would it not be overkill to say the same things over and over again? 

(No it wouldn't.)

To someone who does not understand the socio-emotional fallout of becoming chronically ill/disabled, it is impossible to perceive the importance of our need to cry out about the life that has been taken from us. It is difficult for them to capture the constant, everyday "face-to-face" that we have with our limitations, and the constant sensation of frustration and imprisonment we deal with...the never-ending reminder of work we can not do...

Our friends, spouses, and others, hence, rarely understand that the repetition of sympathy and supportive comments to us can not ever be enough! These comments feel good. They makes us feel heard and loved and cared for and recognized. They somehow put a "period on the end of the sentence."

Previously, I was not too sure about this dynamic. I did not ever want to be a complainer or whiner. Yet facing constant pain, while watching my life shrink to a mere dot of what it was heretofore, left me with a great deal of angst. How to deal with it? How to share the injustice? With time, I came to this resolution. That to externalize it, and to garner a sympathetic comment, is all that it takes to feel encouraged, supported, and freed of the binding suffocation of carrying it silently.

When I was able to finally explain this to Leif, he got it completely. Now we have our little "pain dynamic communication." It has been a great thing for me. I will say what is happening, and Leif will reply with a sympathetic response. That is all I need, and that is all that can be done anyway. Then we drop it, and go on to the next topics at hand. Fast and easy. 

Without expression of our physical pain, we are simply holding it all inside. To a large extent, we have to do that ANYWAY, because life as a disabled, hurting person implies a lot of "shoving it down" while the rest of the healthy world leaves us in the dust. But to have to not even mention our pain? To have to act as though it is not banging against every cell of our consciousness? Nope...I believe that this "don't talk about it" suggestion for dealing with it foments feelings of isolation, loneliness, and failure. 

I do not remain in the company of people who complain, and whine, and want to make the entire day's conversation about their crappy health and rotten lives. UGH. However, I will gladly share the woes of someone who states it, as it is, and then PROCEEDS ahead with whatever it is that they do to make their lives as good as possible. 

IT NEEDS EXPRESSION. IT NEEDS ACKNOWLEDGEMENT. 

and then...FORWARD!

Sorry to give a big lecture here, but the people who suggest "don't think about it," or "don't talk about it" have their heads up their nether parts. And they very obviously have not dealt with long-standing illness, pain, weakness, and limitation due to disability. May they know it one day. 

My rules, if I were to talk to someone about their addressing their pain:

1. Talk about it. Say what is hurting you. Say how that makes you feel.

2. Expect /request / "teach" whoever is listening to offer a kind comment. Not go on for hours, not be a cheerleader, not be a parent, not be a lifesaver, but be a simple support, saying short and sweet sympathetic things. 

3. End comment time with something akin to "Oh well. It is what it is." 

4. MOVE ON. Do not spend a lot of time on the complaint (unless there is something new to discuss).

5. Express your pain whenever it is necessary. 

Rate of repetition: In my case, I am compelled to talk about my pain every time it worsens, or there is a shift in health. I probably mention my health somewhere between 5-10 times a day.  I also mention it when I am simply frustrated. All I want is for those words to be "out there...outside of me...and then to be acknowledged. Nothing more. I don't dwell. I do not want to get into it. I just want it to be "outside of me" and with a sympathetic "awwww," I feel supported and better. Then it is OVER. And I feel heard, and better for having externalized it.

"Moving on" (after expressing the pain) can take many forms. For me, when I am at my worst, it usually means finding something silly into which I can escape as not to concentrate on the physical hell. Other days, it means more, as I am able to do more. 

It is important, after saying the truth, that I always do something...something that reminds me that I still can do something, even if it is to merely sink into a Netflix marathon. This immediate application of me-to-action is a living symbol -- that I can complain, but I have a life. And I will continue to make a life.

Forward!