So much living in the brevity of your life.

All of it softly, uniquely yours.

One solitary chance to be noticed; to soar, seeing the world like a bird in silent flight,

catching on your tiny crystalized arms,

the faintest hints of moonlight and sunlight and starlight,

throwing them back down for all to see your art; creating your miniscule stamp on the landscape, becoming part of something collectively more beautiful

than what you, the individual, equisitely are.

Perhaps in doing so, you even realize you have purpose and that you bring joy, and that you communicate with and touch others.

Only once will you know the meandering descent in crisp air,

softly landing in the arms of kindered spirits to rest and meld.

Softly, golden-warm-glow draws you up, away, and home

to wait for your re-birth as something quite new.

As you mist into the atmosphere, the ground below you sighs gently,

as if to say she will miss you for now.

Tomorrow is your birthday.

I remember being a young child and having birthdays. They were always fun; always important. You made them that way, including your own. Holidays and special occasions, in retrospect, were welcome distractions from daily life and it’s shades of blue and gray.

Birthdays were exceptionally fun as occasions went, I thought. They came adorned in a full spectrum of cheerful colors in the form of streamers and cards and balloons and wrapping paper and bows. I loved that about birthdays. They weren’t limited to a few shades of pinks and reds, or greens and yellows, or anything else specific. They were open to interpretation. They were custom-designed; tailor-made for whomever was on the calendar for celebration that day.

Adding to the list of reasons that birthdays bested other yearly festivities by my standards was the offer of choices, the carte blanche ability to steer the boat for a day or so. You got to ‘pick’ whatever was to be decided by default because, well, it was your birthday. What to eat, what kind of cake, which movie to watch, what should we do after dinner…...all you, all day. Glorious.

Tomorrow is your birthday.

I remember that every year I chose banana cake with cream cheese frosting. No one else seemed so enthused by my choice, but I made it every single year because it was my day and it was my favorite and to this day, if given the opportunity, I still make the same request of whomever might be so thoughtful to ask. Without fail, someone always makes puppy-tilted-head-question-face at me and states, “What an odd choice for a birthday cake!” I guess? I don’t remember the first time or how I decided it was my favorite. I just remember it being so. Whatever came before is lost, somewhere amongst the piles of dirty laundry. Maybe someday.

I don’t know what you picked. I don’t know if you picked. I don’t even know what you would pick. I remember there was cake for your fortieth birthday. I have a picture. You are smiling. Your hair is short. You are pretty and you look happy. I also remember a Chippendale with muscles like rocks in a nylon sack. I wasn’t sure what this had to do with being forty, but I assumed you picked it. I don’t know who would have ordered this gift for you. Did you?

Tomorrow…

I remember when I turned thirteen. I felt fat. I dieted. Looking at photos now, in hindsight, I was perfectly fine. You bought me a diet book and said it was best that I pay attention to my weight now, because soon boys would only see how big I was, and not appreciate who I was inside. You hired a Chippendale to surprise me, because I was thirteen. He came to the door and you giggled and shoved me to the door to answer it. I shut down. He looked the way I felt; too small for what was happening and eager to be out of the situation so he could feel anything again. He gave me balloons. He didn’t have rocks for muscles. He looked like he was a boy recently, too. His head looked like that of one of the guys from my Tiger Beat magazine with a friendly, handsome, white toothed smile. His teeth all lined up with one another just so, the way that money does, not nature. His hair was thick and dark and parted in the middle. It was nice hair, and fashionable for the early 1980’s, but the whole thing seemed somehow overly large in proportion to the rest of him. His chest was slim and flat and seemed vulnerable and inappropriately exposed. He kissed my cheek reluctantly, having taken three small hesitations on his way in as if my cheek would possibly be molten hot or an angry shot-gun toting father might be lurking behind the sofa ready to pounce. He smelled heavily of cologne that was not befitting him. It smelled like a mature sexiness that neither of us was equipped to handle. He wished me happy birthday in an awkward, barely audible voice, and we posed for a photo which my mother took with one of those little Kodak cameras that looked like a slim, black, hard plastic wristlet that has an ice cube for a flash. His eyes were kind and soft and crying out for help at the same time. I saw the same kill switch had been activated in his brain as in mine, the one that stops feelings so you can get through it, whatever it is. I felt dirty after.

Tomorrow...I should have at least sent a card. Now it’s too late.

My brother, three and a half years younger than me, always picked the best cakes. When asked what kind of cake he wanted, the intentioned answer sought was a flavor, but he always asked for a thing: a guitar, a skateboard, a firetruck… My mom, not the most artistic, turned to our neighbor for assist in these matters. They pulled off some great results, and this was without the benefit of the internet or instructions of any kind, mind you. Just cake recipes and creative ingenuity, and, as I recall, a lot of cursing and laughing. That was early on. That was fun. Until thirteen.

You invited all of his friends over to gather in the living room to watch this time. The photo itself wasn’t enough. For him, you needed an audience. His was a girl. She was in a gorilla suit. The gorilla suit was stuffed into a pink ballerina costume. Supposedly these layers between her skin and your son, made it funny and not inappropriate, but to a thirteen year old boy, a lap dance is a lap dance and a room full of your friends laughing at you is just that, regardless of the reason. I have those pictures, too. The pain in his face. The humiliation. The sadness. He looked victimized. His friends, who laughed while it happened, acknowledged later how weird it was and how they didn’t know what to do.

When he turned thirteen, you repeated your odd right-of-passage ceremony as it had become to mark a passage into….what? Puberty? Surely not. Freedom? Adulthood? What did this ritual mean to you? What did you feel that day you when turned forty and we were all in the backyard at Grandmom’s and this over-sexualized being came and flirted all over you, making everyone else uncomfortable. It was the afternoon. Grandmom was there. Our priest. Me and my little brother. Our aunts, uncles, and cousins. What sensation did you have that translated to something you wanted your children (CHILDREN) to experience firsthand. What was this gift? What did you mean to give us at age thirteen? I am quite sure it was not trauma, but that’s what we received.

Once you make a break, it should be a clean break, right? Should I feel guilty?

It’s been four months since we spoke. Four months since you threatened me with police and lawyers. Since you called me six to sixteen to sixty times per day with a different mood every 45 seconds. It’s been four months since I realized that my efforts to ‘help’ you only angered you or enabled you or further restricted you. It was four months ago that I returned your checks and your keys and gave you instructions for how to pay your bills and reported off to your social worker and the nurse at the assisted living and wished you godspeed. I blocked your number because I had no choice. You wouldn’t stop. You are sick. You couldn’t stop.

Tomorrow is your birthday.

I have a knot in the pit of my guts. From it, springs a vine of pain and tears that grows spontaneously when it hears pills in a jar, or I go to the pharmacy, or I cut my husband’s hair, or I see a cane like yours, or I see a cat, or your wig catalog comes to my house. This vine springs out of a crack deep down and wraps itself tightly around my heart and something in my throat until I feel both ache in a way that is unique to “emotional”. Before I can catch up to myself, my eyes are wet and my hands are shaking and my breathing is fast and hard in and out of my mouth where the door is wider. This feeling comes (has come) since childhood, often and hard. It comes less now, since four months ago. But now is hard. Now I feel guilt. I don’t know how to treat you. I know I don’t like the way you treat me. I know you are sick. I know I am healthier now and I have room in my own brain for my own thoughts. But not right now. Not today.

Tomorrow is your birthday.

Three life-times ago (you with your boy/girl eyes and slender wrists) turned on me that night. Your upper lip pulled down tight over your teeth like a shade hastily pulled down with a fat cat on a windowsill, pointing your long, delicate yet boy-acting finger in my whimpering face resting just in front of the rest of my terrified head that swam with whiskey, shock, fear, and utter confusion all at once, somehow manifesting in tears and me backing myself against our hallway wall just inside the door to our 1970’s throwback studio apartment with the olive green carpet that followed me for many years of my life.

You broke. You broke us. You broke me.

That was the night I first heard the paranoid ramblings of your mother in you. That was the first time I saw you out of control. That was the first time I was your enemy. That was how you broke me.

I left home looking for something. I was looking for what you gave me. You were looking for it, too. We all were. In that little gayborhood in Seattle, amidst the cool mist that carried whiffs of roasting coffee and clean snow and ocean and pine across your nose and skin and hair, in that cocoon of like minded, like-victimized, like-veganed, like-belongingness.

I morphed into something of a stereotype; like an exponentially exaggerated externalized form of my inner leanings taken a few steps down the continuum to a place that felt like research or relatable experimentation. I was down with it, but I was not all it. To this day, I identify with these groups in advocacy, but swam back to the shallow end of the pool where I was born and where I am comfy, albeit wiser and more aware that there is a world outside of my tiny existence, and that I (am) could be many versions of myself given a multitude of situations and settings.

THAT is wild to think about. That is something that, given the benefit of too much sun and water, might make a person do things like hop lilly pads without warning or much thought other than that it’s an option and why not.

It’s safe to say that I have reinvented myself several times over by now. I also would venture to place a comfortably safe bet that many of my loved ones would perceive that I have done this in several non-traditional, questionably sane, possibly flakey ways. I would not begrudge these types of assessments of my life from an outside vantage. I might be quick to make similar observations if I were not me. Hell, I might even make them about myself if I sit here and think about it too long right now.

The point, which is dancing like a moth in a lidless jar right now, is that on that night, in our softly lit cocoon, in the New World where I felt loved and understood and emotionally nourished, you did that thing to me that they did. You did what made me leave them and make a new home. You punched me in the face with your words. You smashed my head against the wall by making fun of me for crying. You reached inside my skull and with both hands, wrung my brain until it bled by telling me that I was crying to manipulate you because, “that’s what you do.”

You left bruises on my heart and my mind unable to hear the words the way that people say them to me anymore. The twist you gave my brain mangles the words into backhanded implications, and I hear them all wrong, but so clearly.

You told me that I placed too much value on comfort and that it made you ill. I believe that this was a tirade that came at your second such episode in response to my expressing my disinterest in traveling with a squatter punk circus and that I was going to look into school because I wanted to have health insurance and be “comfortable”. I learned that particular day that I was fond of that word, used it often, and made you nauseous with it, especially in reference to comfort food, which was indulgent, unhealthy, and disgusting.

Shamed, for what I say, my weight, my lifestyle, my food choices. You reinforced every terrible thing they told me. It was pretty bad to have two parents who did not nurture or soothe, but rather corrected and criticized and yelled and punished and publicly ridiculed. And then to enjoy five, FIVE years with you of total relief of that, of filling voids and repairing self-esteem. They were great years. We laughed and talked and we played cards, spades mostly, and we sang and played guitar and smoked lots of pot and daydreamed and worked at the pizza place together.

I loved us. We were fun. I loved our friends and our cat and our tiny kitchen and our creepy landlord. Until you broke us. And then I didn’t. It took a lot of glue to get over you. Now, twenty years since we ended, I think about you. I wonder what happened that night that you came apart. I wonder how many times it has happened since. I forgive you. I am ok now.

by JMEC

Between the me I want to be and the rest of the world are a few versions of me that have been battered and are a little worse for the wear. They step in and answer for me and try to let me be because they know I have little to nothing left and need to recharge. They are imperfect defenders.

When you ask me questions, offer advice, try to help, and mean to soothe me;

there are times that one of my damaged selves plays gatekeeper

and tries clumsily to handle my business while I am elsewhere unable, recovering.

One, of which I am least proud, is gruffly impatient, having no time for extraneous information. You’d do best to steer clear of her unless you have a real emergency or are truly in need. She will slice your head clean off with her tongue if you ask for something you can easily do yourself.

Another seems sweet and kind, but she is faking. She doesn’t want to hurt your feelings. That part is true.She wishes things were different and wants to help, but she can only keep up this facade for a short time before she begins to tire and wonder why you need her and why you can’t help yourself when it’s clear she is not ok. So please, don’t overstay with her or she can turn on you or become wildly emotional.

Real me is under all of that, flat and bored and glazed over. She wears headphones and eats too much and smokes too much and would crawl into a thick Nerf ball and live there undisturbed if she could; if it was air conditioned and had food delivery service and television, that is. She is tuning you out. She doesn’t mean to. She just wants quiet and wants you to take a hint.

I’d love to be the inspirational story of triumph over pain and spiraling poor health that you want me to be. I dream of it, when I am lucky enough to sleep. I pray for the strength and the courage and the tolerance to “push past the pain” and exercise my way to fitness and health.

I did that for a while. Tried. Pushed. I still do. You can’t see it. I am doing it now. My shoulder burning and my hand numb as I type. My knee throbbing. My fingers stiff and swollen. My guts ever burning and rejecting most of what I provide.

I have had a fever for the better part of 2 years now. Do you know what that feels like? Truly? The next time you have a fever and your eyeballs ache and you are exhausted and your arms feel so heavy that changing the channel makes you want to take a nap, try to remember that I have actually had a fever for 2 years now. And no, I don’t just get used to it. And no, I can’t just exercise it away.

It takes an army to fend off your love, all of you who mean well and don’t know what to do and who don’t want to hear about it, but wish I’d just be like I once was and say something funny like I used to over drinks and cigarettes on the back porch late into the night. I used to be hilarious. Remember? I do. I miss her too. We have that in common.

pic: https://goo.gl/images/usf7zL

In our upstairs apartment, with short, textured, mossy green carpet and a white wrought iron railing that divided the stairs leading down to the front door from the living area, the three of us sat at a little table between the kitchen and the living room eating chicken a la king. I remember being so dazzled by the taste and confused by pimientos. I remember a feeling. Someone was angry, but I was distracted by the food. My mom was making that face you make right before you cry.

We moved from that starter apartment into a nice, suburban house in a new rural subdivision. We lived there during my pre-school, kindergarten, and first grade years. The hospital stood across from the entrance to the neighborhood like a giant Saint Bernard sitting and panting, ready to spring into action. This was both comforting and creepy in the same moment. At the same entrance to the neighborhood, across from the hospital was as a little convenience store where my friend Jennifer and I would ride our bikes to get Chunky bars, pink Yoohoo, and Big League Chew.Jennifer lived in a townhouse just behind me. We were the same age and liked the same things. I loved her very much.

Our house was a pleasant , olive green, two-story with a lovely little birch tree landscape design in the front yard. Upon entering the front door, to the right was a beautiful living room with a big bay window, shining, hardwood floors and a gorgeous white stone fireplace along one whole wall. There was a chair from our old living room set from our apartment that had been placed in front of the fireplace, oddly not facing it, but rather with it’s back to the beautiful piece as if to guard it rather than enjoy it. The rest of the living room set lived in the sunken den off the kitchen. There was a large rubber tree plant in one corner of the living room closest to the entryway, which gave the house the appearance of life from the front door. My mom used to give me a damp cloth and have me gently, GENTLY dust the leaves on a pretty regular basis. Point being, except for a chair and a plant, this expansive room with the stunning fireplace, natural light, and gleaming hardwood floors was empty. We never moved into the most important part of the house. We didn’t live in the living room.

At the time, it was a fun place to spread out all the presents we got for Christmas around the tree. It was fun to run around in circles unencumbered. It is not until now that I see that a big, empty living room was a sign of the impending doom of my parents’ relationship. It became a corral for us, my little brother and I, to play out of the way, oblivious of what was amiss. It was a gymnasium. I never thought anything of it at the time, other than that we had a huge playroom. For me, it was a blank canvas. It was a ballerina studio, my nurse’s office where I provided care for a line of sick and injured stuffed animals, a baton practice place, a place to spread out games and toys. We either played there or in the basement, which again, was painted green. We had a gym mat to flop around on, and I had a cardboard Disney playhouse to play in. I do remember being downstairs in the basement and hearing my parents fight. I remember my brother and I fighting and crying over nothing, presumably to get their attention. When that didn’t work, we would climb the basement steps and linger there, sitting on the top couple of stairs listening until it was ok to come out.

The living room was also where my dad sat, in that one chair, with the newspaper. He gave the room presence and purpose for that little bit of time each day after work or in the morning on the weekend. In my eyes, he was like that statue of Abraham Lincoln in that chair. He was larger than life, fascinating, strong, and mostly...I just wanted, specifically in that chair, in that room, to sit with him and be part of his moment. I wanted to hear him breath and watch him snap the pages to adjust them just so, scanning the columns for something of interest. Wondering what that was. I remember that well. I remember feeling close to him there and then. He was calmest then, and I absorbed it. It was the calmest thing I knew from either of my parents to date.

I also remember when that ended. When that chair became empty. When my dad left, I realized for the first time that this room had been empty all along. All that was left was the chair, and the fireplace, and my mother’s tears. It was 1978. I was six My brother was turning three. My mother never stopped crying after that. And my little brother and I would struggle to know our place in the world after leaving that house.

I am here (down inside).

Your voice is muffled and I don’t much care because I don’t feel like hearing you right now.

Everything outside of me is too much and over-done. The corners of my mouth pulled down and held in place by boulders so huge there’s no point in trying.

Behind the dark curtains of my eyes, is a private second home where I hole up and push out everything that is too loud to feel and succumb to the gravity rendering every molecule of air dead weight.

Fighting depression is like trying to stand up with a car on my lap after not sleeping for a week.

I embrace these heavy times. I let them come and pass by. I rest. I write. I think. I stare. It always passes like weather. I have learned to hold the hand of this dull version of myself, keeping an eye out like I would for a loved one. Tears are cathartic and cleansing.

knee-his (tan/sandaltoe)

trash bags - kitchen

deoderant

Wheat Thins

toilet paper

tissues (square box - NO flower print)

crazy glue

manicure scissors

cat litter

birthday card for grandmom

rent check

stain remover

underwear - size 8 nude briefs

I remember being small.

Sunlight, tinted with amber,

filtered through leaves,

casting shadows on walls and ceilings.

This tiny version of me, transfixed upon a rippled stream of golden flecks and mirrors soothing me to sleep.

The rhythmic water-like waves urging me around the next corner

and the next, each a little darker and quieter, eyes heavier and progressively less certain of unblinking, sinking softly into sweet slumber.

You can call it what you want, but people will tend react similarly regardless. Chronic pain, invisible illness, a syndrome, malaise, etc. These are all terms that tend to garner little empathy from the general population and for whatever reason, carry connotations of softness, tolerability, and something that can be handled bravely and successfully by choice or succumbed to with weakness and lack of stoicism that the onlookers fancy themselves to have presented with similar circumstances. At least this has been my experience from most, even the well-intentioned.

There are some, the few, the ones who possess and practice true empathy, who will step into your shoes and ask pointed questions and make an effort to know the depths of your suffering, even if they cannot fix it or solve it. Those people understand that sometimes it’s enough to simply understand, to listen, and to be with someone so they can be heard.

Therein lies both the curse of loss and the gift of finding true friendship and unconditional love when sinking into a chronic illness. It is simultaneously painful and sad, as well as profound and discerning. It is dark and hopeless, and yet, light finds its way in, its rarity now making it more precious. I learned to appreciate more and expect less over time.

My husband has Muscular Dystrophy. He was born with it. He is slowly becoming paralyzed as he gets older. It is hellacious. No one ever questions the tragedy of this. No one ever blames him for inheriting the genetics that caused this sinister destiny. My own family is “inspired” by his existence, his attitude, and his ability to live the fullest life he can. He doesn’t complain. He does what he can for himself. He accepts every setback with grace.

Everyone I know with cancer immediately gets sympathy. Cancer is typically a tragedy in the eyes of most people. Mention cancer and people start sending flowers and bringing over casseroles and starting Go Fund Me pages.

But, have a chronic illness, or chronic pain, and something quite different takes place. Folks will ask how you are, genuinely. And they will be concerned at first. But they fatigue quickly. After a few check-ins, if I don’t have answers, improvement, or some sign that this topic will reach closure, they will tune it out. Some will observe me as a hypochondriac. Some will tell me to focus on something positive, or come right out and say, “don’t you have anything GOOD to talk about?” Others still will blame me for my disease.

I am overweight. I always have been. Since my diagnosis, my inflammation has been insanely high and my weight has really taken off. My joint pain causes me to waddle. I get why people look at me and observe that if I lost weight, I’d be better off, but this is not lost on me, and I am ALWAYS actively trying. The cutting remarks leave me feeling further injured.

Being in pain all the time is like trying to recover from a car accident that keeps happening every day. I make some progress and then I am horrible again. I can’t think. I am sensitive, physically AND emotionally. I have to really stretch myself to reprocess almost everything that anyone says to me. My initial reactions are defensive. I have to stop, dig deep, find empathy, and sometimes not even respond at all.

Ultimately, over the last few years, I have learned this lesson: you cannot change people. You cannot help how people think about the world (or you). All you can do is take care of you and the people who show you love. Try to forgive those who are making mistakes. If people (family or otherwise) are causing you more grief and pain than they are supporting you and loving you, create unapologetic boundaries.

Expectations of how others should treat me based on how I would treat them have caused me so much pain in the past. Letting go of those expectations is one of the best things I could ever have learned, or offer to someone else. Treat people as they have earned to be treated by you. Lean like a flower toward the sun into the love that is around you. Create your own family of support, no matter how small. Never stop trying to be a good friend and someone that people want to be around in your best moments and when you can. This is what loving and “getting it” is about.

Oh, I envied you (if you were even real at all).

I have to be honest that in recent years

The evidence of your existence evaporates

Until my idea of you becomes a non-entity; a figment; a fable.

I wanted to be like you once, to know your fortune and stability.

I yearned to ask you about unconditional love and unquestioned support.

I have laid in my bed singing myself to sleep as a child.

I envisioned what it was like for you with someone else to sing, stroking your hair while you fell asleep without a single worry or care.

I could have listened to you talk all day about your father and how he looks at you proudly,

Like you could do no wrong or could be no more fascinating or capable or fun to him than anyone else he ever met.

Did he come home for dinner where you all sat, laughing and sharing, and ask you about your day? Did he tell you he was proud? That he wished he could be brave like you? Or kind?

Was your mom soothing like I imagined? I used to think she probably told you that you looked beautiful no matter what you wore and that you deserved better and that you didn’t have to settle.

Did she laugh with confidence and demand respect and choose in your father a loving and good man, so you would learn to do this as well?

But years passed and I can’t find you. I can’t find you in my family. Not one. I can’t find you in my friends.

Broken boys have dropped their toys and fallen in love with the likes of you. But broken boys break more than toys and their charm hangs on a hook by the front door.

In the isolation of households, broken boys break broken girls and broken girls break themselves by bending so far for others that they forget they are not made of clay.

I am not so unlucky, this girl. For everything I wished I’d had, I somehow learned to make. I give it away like crumbs for birds, because that is what you do, and it feels good.