The Pain of Not Being Able to Communicate

~ Kristin DeMarco Wagner ~ Leave a comment

donut

This is the second installment of my column Pain and Joy.  I plan to continue on with it the first Wednesday of each month, so wish me luck!

Christopher, Nicholas and I sat on the couch, their pointy elbows pressed into my ribs, and their pointy chins digging into each of my shoulders as they tried to crowd in to get a better look.

“How come Christopher is always so cute in pictures, and I’m not?” Nicholas wanted to know.

“Kiddo, this album is from 2011, and you would have been four – that cute kid is you.”

Nicholas looks sheepish and pleased with this realization, but also surprised, “I was so little!”

“Hmmm, yeah guys, this is Christopher,” I point at a picture of a toddler with impossibly chubby cheeks sitting in a red plastic wagon, “He would have been one and a half here.”

Christopher, so mature and lanky at six years old, lets out a squeal over how cute he was, while I notice a pattern to our pictures. “Hey, what’s up with you, here? In every other picture you are completely crabby!” Actually, in three out of four pictures he looks either completely unimpressed with life or, as Thomas the Tank Engine might say, quite cross.

Giggling hard he gasps, “Why was I so angry?”

“I know, right?” I goof with him, flipping pages rapidly, “Cranky, cranky, cranky, happy! Cranky, cranky, cranky…”

When Christopher laughs now his cheeks still get round and full. He’s now laughing so hard that he is slightly out of breath and…

“Happy!”

He lets out a long sigh and wipes his eyes.

I didn’t realize how much of his unhappiness from that age would have come through in those pictures. I do know why he was angry, or rather I can guess. Long past when he should have started, Christopher either couldn’t, or perhaps wouldn’t, talk.

Christopher was, and is, wonderfully adept at reading people’s faces, at discerning the tone of their voices and at understanding the nuances of gestures. As a toddler he could express himself non-verbally almost perfectly. His body language transmitted his mood exactly, and he brought his whole body into sadness or frustration or manipulative charm. He knew to direct your eyes to where he wanted you to look by staring you full in the face, and then directing his gaze at what he wanted. His sighs and squeals and yells were unmistakably clear, but that was it. He didn’t babble. He only had one word by the time he was two.

I knew he was angry that he couldn’t get us to understand what he meant or what he wanted, or more importantly, needed. We would begin a ridiculous guessing game. It was a lightening round of 20 questions, where I would survey the situation, scan my memory for what he would be most likely interested in, and ask a yes or no question. I hoped like hell that I asked the right one before his frustration detonated. If he shook his head “no” too many times steam would practically pour out of his head before he began stomping his feet, and I would frantically try to get it right before he would collapse in a sobbing heap on the floor in utter hopelessness. Or his tantrum would be quieter, with him simply stopping in his tracks, refusing to look up and refusing to walk forward another step.

Christopher began speech therapy after he turned two.

The Halloween he turned two and a half, I had been wondering out loud what his costume should be. I had grown accustomed to making these decisions for him, as he rode quietly in the seat of the shopping cart. I picked up a little faux leather jacket and muttered to myself that he could be a rock star. Christopher paused in what he was thinking about to focus his eyes on me and said very, very clearly, “Dog.”

I was stunned. This was the first time, the absolute first time, he was able to calmly express that my ideas for him were not the ideas he had for himself. Just one word, one syllable; the access to that one word gave him power. That one word gave him the ability to feel secure in his message, to feel secure enough in his ability to be understood that he didn’t have to scream. He didn’t have to cry. I didn’t have to guess, and guess wrong. I blubbered, “Of course you can be a dog! Of course you can be a dog.” He smiled, a very quiet serene smile.

Christopher turned three in April, and the volume of the words he could use had exploded. At his meeting with the school district, the evaluator said that he was no longer delayed, but he could continue with the program for pronunciation help and emotional support. His tantrums were no longer something that dominated our days, though he still didn’t have quite enough words to communicate everything that went through his mind, so they did still happen now and then.

In May, I brought the boys over to my parents’ house to visit and tell my mother that they loved her, now that both of them could. I dropped them off at my in-laws to stay the night, as my father and brothers and I would be helping Mom through open heart surgery the next morning.

When Mom’s surgery was successful, and after she had been in the recovery room for the initial few hours, we were allowed to see her, two at a time, in the ICU. I don’t remember who went first. I know Dad was one of the first two, and then maybe one of my brothers Scott or Matt or Anthony. She was not awake the first time I saw her. The second time I came in I know Matt told me, “She seems happy when you hold her hand.”

So I did, and as I held her left hand I thought about what she might be feeling. Her face was flushed and scrunched and looked distressed. I wondered if she felt anxious about the breathing tube still being in place. I wondered if she was feeling pain from the incision, or if she felt worried about her Parkinson’s meds being off, or if there was a part of her that felt scared or lonely. Then she tried to wriggle her fingers out of my hand. At first I held tighter. She seemed to be trying to break free of my grip, and I chastised myself that perhaps I had been patronizing and she didn’t need my hand.

Confused, I then tried to release my hand, and Mom, with limited motion because of all the equipment attached to her, waved it back and spread it open. She traced something on the palm of my hand, and I looked up at her face with surprise, “Are you trying to write something?”

She blinked her light green eyes so deliberately I knew she was nodding yes.

“H…” I would look down at my hand to make sure that the letter I felt was what the letter actually looked like. I had so many years of practice when she would trace the alphabet on my tiny back and I would proudly tell her that I knew what she was writing. As I said each letter I looked up at her face to confirm I had gotten the letter right.

“O…T. Hot?” I looked up at her and with a softening of the tension in her face she indicated yes. Just one word, one syllable and her power came back. I wrenched myself away from the soft fuzzy imaginings of what she might be feeling, and was able to focus on the practical things that needed doing. My ideas about her were not the ideas she had herself. I played twenty questions with mom, “You feel too hot? It’s really uncomfortable?” Then I would ask the nurse, “Can we remove that blanket? Is this normal to feel so hot?”

By then I know Anthony was in the room with me, and I would call out letters to him so he could help me string them together coherently.

“T…A…P…E”

“The tape is bothering you? The nurse says we have to keep that on, its holding the breathing tube in place, I’m sorry.”

“I…P…O…D”

“Oh yeah, the soothing meditation sounds for afterwards. We’ll get that set up right now.”

“C…A… wait I missed that one, you have to slow down a little because I can’t keep up…H…B? Okay Mom, the nurses need to you to relax for a little while to get deep breaths to get your oxygen levels up.”

When Mom breathed deeply enough, she would fall asleep and her oxygen levels would drop, which meant waking her up again. I explained the situation to her and she wrote in my hand one more time before I was shooed away. I was so tired I couldn’t catch it. “Tell me later, Mom. You can tell me later.”

Later on she told me with a smile, “I’m surprised you didn’t get that one. I was writing ‘Catch 22’ joking about what the nurses wanted me to do with the breathing.” I smiled back at her and apologized for missing it.

The same way I had apologized so often to Christopher, “I’m so sorry I didn’t understand you.”

Standing Still-A Free-Write Response

~ Kristin DeMarco Wagner ~ Leave a comment

Literary Mama had a free-writing prompt today asking, “Consider how you make space and time for stillness.  How do you slow down?” I decided to free write today, to answer that question for myself.

pizza

Home-made pizza is what makes me slow down. It is a ridiculously slow process for something I can get other people to bring to me, hot and ready, for a really nominal fee. I live in such a busy suburb of Chicago I can even get deep dish pizza delivered within the half hour. But scheduling in homemade pizza as a dinner is my way of saying to myself, “We are not bound by deadlines today, we are not going to try to make, eat and clean up from dinner in thirty minutes so we can rush off to do God knows what else that seems more important than just relaxing.” It takes time to knead the dough, to let it rise, to roll it out, to get everyone’s apron on and off, to let everyone put their own toppings on, to take pictures of the pizzas before they cook (always) to clean up the four cookie sheets and one glass bowl we need to use, to wipe down the flour-covered counter and floor and to let the piping hot pizzas cool off enough to eat. We eat on a blanket in front of the TV. It is a signal. We do not need to rush every moment of our lives. We have a luxury of time we either don’t admit we have over fears of looking too privileged, or don’t use because we fear we’ll be the only ones. This is a signal that the world doesn’t need to swirl around us, that pausing and taking unnecessary time together is necessary.

Pain and Joy

~ Kristin DeMarco Wagner ~ Leave a comment

willis tower

This essay was intended as the beginning of a monthly column, a pitch for a well-regarded online literary journal.  As I mapped that series out, I decided that these were ideas I wanted to write about regardless of whether they were accepted and published elsewhere.  They weren’t picked up, which is disappointing, but I’ve decided that the first Wednesday of each month will be when I continue the column for myself.  That’s my intention, at any rate, and we will see how that goes.  Thanks!  

My two sons, Nicholas and Christopher, are eight and six respectively. My chronic illness began when Christopher was just a year old, so by all accounts they have known a mother with pain far longer than they have known her without.

The first blood tests were drawn out of my fat, left-arm vein when Christopher was still small enough to fall asleep in his car seat and was portable like a piece of awkward and heavy luggage. Nicholas was squirmy and independent at three, and I couldn’t trust him to not run through the parking lot if I let go of his hand. Christopher swung from my left arm and Nicholas from my right, and I shouldn’t have gotten the three of us from the doctor’s office to our car that way. I bruised an ugly purple in the crook of my left arm later that night.

That was the beginning. Tests for diabetes and allergies and rheumatoid arthritis followed, as well as screenings for ovarian and colon cancer, and an MRI to look for multiple sclerosis. I was eventually diagnosed with fibromyalgia: a disease of exclusion. The answer to my near-constant pain and overwhelming exhaustion was a non-answer because fibromyalgia has no known cause and no cure. The term “fibromyalgia” might really be an umbrella over several linked but separate illnesses, or it might have its own pathology that hasn’t been discovered yet.

For at least five years I fought every day to mitigate the pain I felt and the pain I thought I might be causing them by being a mother who sometimes couldn’t. I fought to minimize our pain as a family and that became my full-time job. I was a stay-at-home mother for both Nicholas and Christopher their wholes lives, but my real work was to track down the root cause of why any of us were hurting.

I have become very, very good at spotting pain from a distance of space or time. I can hear Christopher’s tone of voice change across an entire playground if he is starting to get so agitated that he might hit a friend, and I know that once we have missed three nights of bedtime stories in a row Nicholas’s shoulders will round and slump in defeat and loneliness. I am honed in on pain, and aggravation, frustration and tears and the fleeting expressions that betray those emotions. This was something I could do, I could see pain as clearly as I could see the color of someone’s hair. This was a way I could still help, even from the couch. I had information about how to mitigate pain in many different forms, from migraines and cramping muscle spasms to loneliness and perfectionism. What I didn’t yet know, I found out. What I did wrong, I corrected. What I knew, I shared as often as I could. I found a way to contribute.

Over time, one of my symptoms became more severe. It wasn’t so odd that suddenly my limbs felt like they were filled with sand, but it was odd that it was happening so often. A feeling would come over me that I could not keep my body upright and that I had to lay down immediately. When I realized it was often after I ate, I researched that combination. Reactive hypoglycemia seemed to be the reason why: after eating too much or too much of the wrong foods my blood sugar would spike too high, prompting my pancreas to produce too much insulin which would make my blood sugar sink too far down. Since I have done stranger things than eating small regular meals and avoiding sweets, I decided to try a hypoglycemic diet.

More good days than bad, was how I had been describing my fibromyalgia. But the good days still included wild fluctuations of anxiety and depression. The good days still might mean that I fell asleep on the couch for an hour when I didn’t even realize I was tired at all. The good days meant that I didn’t growl all through soccer practice, but I might growl a lot when the boys took too long in the bathtub afterwards. Then a bad day included a Mother’s Day where Nicholas asked me over and over again what special thing I wanted to do and eventually I hissed at him, “I don’t feel well. I don’t know if I’ll still feel this bad all week and I cannot afford to feel bad all week. It’s my Mother’s Day, what I want is to clean up the kitchen, to put the laundry away, to take care of chores now. I want to know that we’ll be fine for the rest of the week. That is what I want. Is that all right with you?” Something had to change.

I changed my diet, and I felt good. Actually good. It lasted longer and longer. I felt better and better. My good days now included spontaneously taking the boys to the pool and not experiencing the gnawing fear that I wouldn’t have enough energy to now make it through the day. My good days meant fourteen hundred words of writing in one morning, when fourteen hundred would have been a stretch for an entire week. My good days meant I could tickle Christopher and wrestle with him and not hide the tears that would have normally stung my eyes seconds before I would have had to tell him, “I’m so sorry, but I can’t anymore. I’m hurting too much.”

I had lived so long mitigating pain and had become so adept at devising strategies to cope, it was the skill I had honed the most. It was a skill and a body of knowledge I shared with my family and shared with friends and shared with strangers. It became a constant in my life: seeing and helping to ease pain. That was primarily what I did, all day long.

All that time I was a student of pain I wasn’t necessarily a student of joy. I felt fairly certain that joy was, for me, obtainable only in small measures, and I felt content looking for it in small places. On a daily basis joy meant, simply, less pain. If I could achieve that for myself or anyone else I was happy that the limited amount I could do, I did. Now I have passed that limit. I feel much, much, much better. A part of me feels guilty that I do. A part of me wants to learn joy.

I want to share with you what I have discovered about pain. I don’t want the five years I spent in pain, the majority of my children’s lives, the primary hard work I did during that time to become lost. There are times and situations where less pain is the only joy you can reach for today.

And I want to share what I am learning about joy. Because I want to share joy.

Night Light

~ Kristin DeMarco Wagner ~ Leave a comment

My audio recording of Night Light

Dusk

Darkness, the way night makes the edges of things indistinct and brownish-grey, is something I experience most often within the walls of my own home. Children who need to go to sleep by 8:30 and a husband who travels nearly every week mean that night is something that descends gently outside our windows. It does not fall on us while we are sitting on a terrace, enjoying the end of a restaurant meal. It does not surround us as we walk down city streets, or hike through woods. Even in the winter, when the sun dips below the hedge-line of our backyard before dinner, cold keeps us in and cozy. Night does not often fall on us somewhere other than our house.

Which is what makes memories of bonfires on freshwater lake beaches stand out as unique, both as a child and as an adult.

I remember being only six or seven when I was encouraged to try roasting my first marshmallow over a bonfire. The small circle of light cast over the grassy sand only reached the feet of the adults who were watching us. They sat back in lawn chairs, their faces obscured by shadows unless they leaned forward to peer at us more closely. I kept darting carefully between the fire and the adults in that circle of sand, amazed that I was holding a stick over fire without grown-up hands holding on as well. My legs were still bare in shorts, but a sweatshirt helped keep the chill off when I would venture further away from the glowing heat.   I asked again and again if the marshmallow was cooked enough because I wanted to do a good job of it, until one patient grown-up who became tired of leaning forward so often to see a still bright-white confection explained that when it was “golden brown” it would be done. I remember nodding my head not really sure what color that was. As I left it in a little longer, and a little closer to actual flames, I got to see it for myself and understood.

With the adults’ faces hidden and their voices hushed I got the first sense that, while they were there if something happened, I was alone to think and discover and learn without them. The glow of this small space in such a large darkness was enough. Even with an entire universe unknown, there was safety being alone in it as long as some light remained.

A few years ago we went to a family reunion on Kentucky Lake, and one of the nights we had a bonfire on the beach.

My older son was only six at the time, and afraid of many things. I saw him come close to the fire, then retreat with his father just feet away from the light. They were swallowed by darkness quickly, and I could hear their voices trip down to the water’s edge and come back. In that short trip, with my son only reassured by my husband’s hand holding his, he accomplished something big I didn’t know he could. He walked through unknown places without fear; he even felt a frog jump onto his foot and didn’t panic. In fact, he was excited to report what adventure had happened in his short absence from my sight.

I stayed in the sand with the littler ones, including my younger son who was four. We stayed a little ways off from the fire, but made our own circle of light with glowsticks. Preschoolers, with parents just out of the cast of pinks and greens and oranges and blues, sat with me and buried their glowsticks in the sand. They retrieved them and would bury them again, checking how far beneath the surface they could plant their treasures before they were completely obscured. They threw them and chased after them, holding so loosely onto the only light they had. Even in the daylight I couldn’t necessarily figure out who belonged to whom, which children went with which adults. I made sure to lean forward so they could see my face and I could see theirs and then tried to let myself feel safe that other adults were circled around us in the darkness. That they were still watching us even if we couldn’t see them as clearly. No one would really be lost in the darkness for long, even if they danced on the edges of it. Though it looked like I was the only one keeping an eye on the children in the circle of light, I wasn’t.

I knew as a child, and as an adult, that a safe presence can still be there even if it is unseen.

Becoming a Hobbit This Summer

~ Kristin DeMarco Wagner ~ Leave a comment

I haven’t posted much for June, and I apologize. Things have shifted and changed around here with the seasons.

Our peonies came and went, huge fluffy pom poms of pink that were delicately soft for being so big.

I swore like a sailor when I found standardized testing “practice” workbooks in the usual end of the year backpack debris field. They were brand new, and I suspect the school wants us to use them. I growled, “I taught, if I believe that you sitting down to do these workbooks is more educational than the other things we plan to do this summer, we will do them. If I don’t, we won’t.” And so far we haven’t.

The boys and I have been very busy sitting in the grass, plucking little maple seedlings out of the lawn to see if the helicopter seeds are still attached.

maple

There are thousands of them, confirming my belief that if we all abandoned our houses, this whole neighborhood would be a forest in just a few short years.

We planted a garden and rabbits managed to eat our parsley. However the basil, cucumbers, and a variety of heirloom tomato the boys picked out only for its name “Mr. Stripey” are doing just fine. Oh, and so are the yellow tomatoes we planted named, like a character out of West Side Story, “Lemon Boy”.

Other changes have happened with my health, negative at first, then positive. Near Memorial Day I realized that while I always feel tired, I was falling asleep more and more often right after eating. It would be a swoon, almost a faint, where my body felt like lead and I couldn’t hold myself upright a second longer. It looked more and more like reactive hypoglycemia, a problem my doctor had casually mentioned years ago in passing, and one that fit my patterns of fatigue and anxiety almost exactly. In this condition, if you eat too many sugars or carbs at one sitting without enough protein or fiber, your blood sugar spikes dramatically and too much insulin is sent in to deal with it. Consequently, your blood sugar then drops too low causing jitters, anxiety, extreme fatigue and sometimes a confusion that seemed suspiciously like when I would experience “fibro fog”. I’ve done crazier things for my health, so I didn’t hesitate long to try a hypoglycemic diet designed to keep your blood sugar stable throughout the day. You eat every two to three hours with low carb, high protein, high fruit and vegetable but small meals. No sweets, no caffeine, no alcohol.

paleo casserole

I feel a lot better. When eating perfectly balanced meals seven times a day is less of a hassle than the symptoms you were dealing with before, you know you may have really been sick. When spending a day of the week making a paleo egg breakfast casserole and roasting chicken and assembling salads and taking a short break to snack on hummus and carrots actually seems like it is a bargain for all the energy you’ve gotten back, maybe you really did have a blood sugar problem.

With this change, something else has happened since the seasons have changed that I never thought would. I have been able to take the boys to the pool, and parks, and to tennis courts, and for hikes around our ponds without the fear that it would be too much. That I would get so scared for them that I would limit what they were allowed to do. That I would become an emotional wreck and start yelling at them unnecessarily in public. That I would feel so sick that I would throw up, or need to collapse, or need to rush home. We’ve spent years, and years, doing not a lot because I just couldn’t.

While I tried to focus on all that I could do, that we could do, it wasn’t nearly as much as other families could. If we went to the zoo with you, or a splash park or a playground and I seemed breezy and happy-go-lucky and fine, some part of that was always a benign lie. Getting through that outing was usually a day or so of planning to make sure it went smoothly and weighing whether the time and energy it would require was worth it. The day after was spent in recuperation, getting either my anxiety back in check or my body, all the while having to tell the boys “no” over and over until I felt well enough to handle the process again. If we did make it, know that I had weighed that it was worth it, that the pain I might have gone through to have that experience was one I said “yes” to, and I absolutely meant it. That part was sincere, if it looked like it was a light and casual thing, that part was not.

Suddenly I have the summer as a stay-at-home mom I had always wanted to have with my boys.

willow

I haven’t had to tell them “no” nearly as often. I have been able to say “yes” with just a moment’s notice, or “yes” to multiple outing in the same day. They are going to become spoiled rotten soon. I still have fibromyalgia, and still have unexplained pain. One evening I did have to tell them that I thought the water at the pool would be too cold for me, and that my muscles might cramp. They did, making it very painful to walk back to the car. But, the overwhelming fatigue is mostly gone and in a pain and fatigue disease, that is literally half the battle.

So, I haven’t written in a while because I have been finally busy just enjoying summer. And because I have suddenly become a hobbit, preparing and eating breakfast and second breakfast and elevensies and luncheon and afternoon tea and dinner and supper. I do find myself walking barefoot through the long soft summer grass more than ever before, and I have always been fairly short.

Look, a Peep!

~ Kristin DeMarco Wagner ~ Leave a comment

I love artists!

This might be a sort of obvious statement for me, along the lines of, “Oxygen is really wonderful stuff,” or “Since I have to eat every day, I’m really happy someone invented food” But, I do feel like it needs saying every once in a while.

I love all sorts of artists for the color and life they bring to the world, the unexpected juxtapositions of imagery and meaning, the metaphors and the details. The melancholy mood of Billie Holiday’s “Foolish Things”, or the violent wind that seems to shake Van Gogh’s White Roses, or William Butler Yeat’s “rough beast” that brings in a nightmare in “The Second Coming”: all are wonderful and terribly beautiful and full of imaginative life. I am transported by a vision or a feeling that I would have never arrived at without the compulsive need of an artist to create. It is amazing.

But, I also love artists for entirely selfish and narcissistic reasons. I love when I can see myself, my life, or what is important to me in the art around me. I love that this unknown photographer abandoned stuffy parlor portraits to capture this mother.

Mother and Child

I think that one of my friends finally softened into trusting me after see the same look on my face as the mother in this photograph has. For the first few weeks I knew my friend, she saw only my furrowed brow and heard only my scolding towards my children. Eventually I let my face soften into the same face in the picture, and I could feel her soften, too. Across a century I see myself.

I love that these animators chose to draw George and the Man with the Yellow Hat this way.

George

This comes from a longer episode of Curious George about Halloween. In this still, George has just been told that a frightening legend may have some truth to it. He grabs the Man’s face and stares hard into his eyes.

My oldest child’s birthday is towards the end of October, and whenever we go to the party store to find decorations for his celebrations we are bombarded by macabre costumes and props: knives and skeletons and blood and gore. My youngest could not bring himself to walk through this store, so I always carried him. When a motion detector would trip ghoulish noises, he would grab the sides of my face in his chubby tiny hands and straighten my head so that I could only stare into his eyes. I could not determine if he was trying to protect me from the scary things all around us, or if he needed steady, unwavering reassurance from me. How amazing that that gesture is universal enough that it made its way into this animation.

My youngest son recently got a book for his birthday, a book he loves and which contains a page that describes the protagonist child’s favorite dessert. On a plate, next to an elaborate and beautiful cake, is a small Peep chick. As soon as he caught it he yelped out loud and pointed at it and laughed and laughed. A Peep! Look right there! I love Peeps!

peep

He recognized himself in the pages of this book, and it made him fill with delight. Someone else who loves Peeps as much as he does, this character. I’m not sure if I should tell him that this particular book was inspired by him in the first place. My brother wrote it and my future sister-in-law illustrated it with him and his love of squirrels in mind. So the Peep was intended as a nod to him from the beginning, and when they saw him see it for the first time, they both lit up.

SquirrelSquirrel 2

Seeing yourself in art never gets old. To see a piece of what you know and have lived reflected back to you, to see something that felt important to you lovingly captured in photos or drawings or poems or songs, it is a kind of magic. The kind of magic that makes you feel less alone and less apart from the rest of the world.

The End of Kindergarten

~ Kristin DeMarco Wagner ~ Leave a comment

Giraffe

I’ve been noticing more about my youngest child lately. I’ve been paying more attention to him, taking mental pictures more often, remembering cute things he does more often.

He just turned six. A few weeks ago he held my hand in the parking lot as he clacked along to soccer in his cleats. He held onto his water bottle and kicked his size 4 soccer ball down the path. My purse was slipping off my shoulder and under my other arm I tried to press sunscreen and another water bottle and bug spray to my body so that they wouldn’t clatter all over the pavement. At the edge of the blacktop he kept holding onto my hand. A bolt of lightening hit me saying, “He might never do this again, he is so close to not needing or not wanting this anymore.” I struggled to keep holding onto him as long as he would let me, even though everything else I had kept falling.

We only have a few weeks of school left, a few weeks where it is just him and me all morning long, just a few weeks before the time I get with him is always and forever shared with his older brother. Next year is first grade, and I have to share him with a whole series of teachers. In the afternoons I’ll have to share him with soccer and chess and whatever else interests him: new friends, books, computer games.

These are the last few times I will take him to the library on a weekday morning, just the two of us. These will be the last weeks of eating lunch together while watching Blue’s Clues or Phineas and Ferb or Curious George.

Today he asked me to dance around the kitchen with him.

Today we put some of his summer clothes on a stuffed giraffe while he got dressed.

Today he rode around the block on a too-small Dusty Crophopper bicycle with training wheels while I followed behind.

Today he asked if I could come into his classroom to see the baby chicks that had hatched.

Today he let me give him a goodbye kiss as I dropped him off at school, even as he asked if he could take the bus next year.

I am going to miss this so much. It won’t be the same again. I know it’ll be okay, but while I had been telling myself over and over how much it was going to be okay, I didn’t realize just how deep my sadness really was.

I have been so lucky to have had this time that I have.

So lucky. Thank you, everyone and everything that has let me have this.

But, Only Hipsters Have Triangle Tattoos

~ Kristin DeMarco Wagner ~ Leave a comment

Maslow's

I am certainly not a hipster.

I also do not have any tattoos.

Yet.

But, lately, the tattoo I have been planning out in my head is a simple striped triangle. A representation of Maslow’s Hierarchy of Needs.

My teacher friends might remember this concept from back in developmental psychology courses. The basic idea is that we are all motivated by irreducible needs, and that once we meet our basic needs we are able to climb higher to try to achieve more lofty ones. The concept is framed as a pyramid.

The base layer of the pyramid contains our basic biological and physiological needs – our need for air, water, food, shelter, sleep. These needs have to be met for us to move on to the next level.

The next level up contains our need for safety – protection from danger (whether that danger is a poisonous snake, a tornado, or a criminal), law and order, stability.

The level after that contains our need for love and belonging – friendship, affection, intimacy, romantic love, family.

The level after that contains our need for esteem – self-esteem, mastery, achievement, independence.

The level after that contains our cognitive needs – stretching our brains, learning, finding meaning.

The level after that contains our aesthetic needs – appreciation for, the search for and the creation of beauty.

The level after that is our need for self-actualization – becoming the highest version of yourself you are capable of becoming.

The last level is the need for transcendence – overcoming the limitations of human needs and human forms. It is complete spiritual fulfillment.

This seems like an orderly way to explain the motivation of human beings, that once the bottom rung of needs are met then we can seamlessly turn our attention to the next level and so on and so forth. When I turn back to this model in times of chaos, it provides me with a way to get my life back under control. When the pain or fatigue or depression that can be associated with fibromyalgia begin to severely limit my ability to function, I go back to the pyramid. I go back to the basics and make sure I take care of each level I can in order. It helps.

It also gives me an organizing principle for deciding what is most important for my children, for my family. Food, water, sleep, shelter first. We are very lucky that the first needs are securely taken care of. Safety is always next. This is such a part of our life that I can yell out to them at any given point, “What is my number one job as your mommy?” and they will yell back, “To keep us safe!” If there is a question of priorities, those win.

It helps stave off bad behavior, usually. Most tantrums come about when basic necessities are off – the boys haven’t eaten in a while, they stayed up too late, they feel sick and need rest and medicine. My youngest had a tantrum this morning because his need for safety was not being met to his liking. He thought he would have to get a shot at his doctor’s appointment when he did not. Once he felt safe (all of his vaccinations are up to date and he needed no boosters) the rest of the day fell into place.

This helps me prioritize what charities we support with the little extra we have. Charities that feed and clothe and shelter people get our attention first. Charities that keep people feeling safe and loved next. Charities that teach after that.  If you can do all of those at once, even better.

I taught in a public school and can tell you first hand how difficult it is for a child to learn if his basic needs, his need for safety or his need for belonging are not being met. Any programs that provide breakfast and a safe environment should be protected. Any wonderful people who can make a student feel like he or she is meant to be right there with them, who can make a student feel safe and accepted, should be truly appreciated. Then mastery and learning can happen. Not before. The pyramid as an organizing principle makes sense again.

But, and this is very, very important, we as humans are not always orderly. A shock, I know. We sacrifice having basic needs met to hit those higher levels. There are examples everywhere. We lose sleep night after night after night going for a promotion. We eat a plate of fries when the problem is not that we are hungry, but that we are lonely. We let obsessions with mastering a level on a video game run over our loved ones. We skip meals to fit into a gorgeous dress because we want above all else to be beautiful. We often choose to meet needs out of order.

And, if under extreme circumstances there is little to no possibility of having our basic needs met, we strive to fulfill any of the needs we have any chance of meeting. Gang members may find their need for belonging is stronger than their need for safety. During unspeakable horrors like the Holocaust, people have turned to learning and appreciation of beauty as the only needs they could fulfill or help others fulfill. Countless people have had to look at transcendence as the only need they could hope to meet in the midst of war or starvation or natural disaster. Our needs are irreducible.

I want a visual reminder that every person alive on earth has real needs.   A reminder that my needs are real, that the needs of other people are real, that meeting those needs is imperative. I want a reminder that this organization of those needs has often helped me and others, and I feel anchored by it.

I want a simple, striped, triangle tattoo.

I also would really, really like it if this tattoo didn’t also scream to the world, “I wish I were a twenty-something hipster who loves the clean lines of geometric shapes” when I am really a thirty-something conventional mom and former educator who actually prefers photo-realistic tattoos of things like flowers and insects and birds.

But,

That isn’t a real need.

Of Solar Flares and Other Things I Can’t Control

~ Kristin DeMarco Wagner ~ Leave a comment

Chronic illness demands a lot from you. It demands nearly round the clock attention, a humming background of vigilance all day, every day. On the surface it may appear that you are baking a cake, or watching a TV show, or playing a board game. Deeper down you are noticing, noticing, noticing. Is this symptom new? Is this symptom a problem? Did I do something wrong? Do I need to adjust what I am doing now, or my plans for the week, or my plans for the rest of my life? Should I trust this bad day is temporary? Should I limit my dreams for my future so that I am not perpetually discontented with what I have? Should I keep dreaming because hope makes me happy? Do I need to act now, right now, right this very minute? Or do I have time to wait?

Should I let my noticing be more like meditation, letting myself feel, acknowledging the fear and anxiety and sadness as it moves through me and then away? Letting it float in and out as it will without trying to force happiness in and force unhappiness out? Should I cultivate peacefulness and patience in the face of uncertainty? Should I take a deep breath and also acknowledge how difficult that in itself can be?

Or should I fight? Should I punch and dig and scrounge and battle and end up muddied and exhausted but victorious?

Earlier in the week it felt as if I was being shocked all over, from thinnest top layer of skin, to deep within my muscles, to my bones. The shocks moved and traveled and paused and started again with an inconsistency that was close to maddening. It happens often. Not every day, but often enough.

The only force inside or outside of myself that seems to correlate with this sensation, the electrical shocks, the hive full of bees stinging, the sharp prickles and stabbings, seems to be solar storms. I have tracked food and activities and mood, the state of relationships with my children and my husband and creator forces, barometer graphs and humidity charts and political climate. When balls of gas suddenly explode from the sun, hurling energy towards earth that can disrupt radio towers and satellites, I feel this particular symptom.

So, should I dismiss this correlation as silly? Instead of scouring the heavens for answers, should I only scour the earth? Do I take all the energy I have and use it in looking for a different reason why, a different drug for relief, a different cause behind this debilitation? Do I notice and then do I fight? Should I act on my behalf, doing something, anything to try to make this better?

Or do I accept the energy coming in and out of my body, do I feel it without judging the waves of pain that come at irregular intervals, do I sit with as much calm as I can?

I am fairly certain that you cannot fight the sun.

Not without burning yourself up into a crisp.

Fibromyalgia Awareness

~ Kristin DeMarco Wagner ~ Leave a comment

fibro courage

Hi Everyone!

May 12th is Fibromyalgia Awareness Day, and FibroDaily.com is posting stories and artwork all throughout May bringing awareness to what people with fibromyalgia go through.

I have a short piece describing what fibromyalgia has taught me, and am excited to see what other people with fibromyalgia have shared!

The link where you can find this piece (and all the other fibromyalgia stories throughout May) is http://fibrodaily.com/

Thanks!

Kristin