Illness

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.”

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.

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.

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

Vanity Mirror

~ Kristin DeMarco Wagner ~ Leave a comment

Vanity Mirror

There once was a boy who had a crush on me, in 1995 or 1996, who said I looked like Jennifer Aniston. It was right around the time Ross and Rachel got together, and it was sweet and flattering and totally delusional. I have the same color eyes as Jennifer. I had her famous hair cut, and by nature my hair had the right color to it. I let my sixteen-year-old self be complimented, let myself be compared to a star and feel puffed up for a bit. I knew I would have been happier to be thought of as attractive on my own terms, but it was better than being heckled for looking mannish in the oversized t-shirts and flannel I had chosen in 1994 or 1995. Once in a while I would watch Friends and Rachel might make a face I recognized as my own, usually when she pouted or pined away or tripped up, when her face was scrunched or sad or embarrassed.

There was a drama teacher in 1996 or 1997 who was about to walk past me during a rehearsal for a musical. I was sitting, reading as I always did. My “Rachel” layers had mostly grown out and my fear that I would be taken for a boy had as well. I was wearing a larger t-shirt, biting on my nails as I concentrated on my book. He paused in front of me and said, “I have noticed something about you. You aren’t vain. The good actresses aren’t. They can’t be,” and he walked on. And I let my seventeen-year-old self be complimented and compared to a star. And some vanity crept back in with a compliment about its absence. And I let myself feel puffed up for a bit.

Sometime in 2014 or 2015, a movie named Cake was released starring Jennifer Aniston. Much has been made of how she has physically transformed for the role. She goes without makeup, her hair is greasy, her clothes dowdy, her visage twisted. In it her character is unpleasant, spiritually somewhat ugly and in constant physical pain. Or so I have read. Some people are applauding the way she abandoned her clean-cut good looks for the role, that it is a credit to her acting talent and craft. Some people aren’t as glowing in the reviews of her acting skills, but still credit her bravery in allowing her image to alter. Good actresses cannot be vain. The worst of the gossip rags exclaim how glad they are that she shows up on the red carpet as her old attractive self.

I have not seen the movie. I have seen stills from the set of the movie. I still look like Jennifer Aniston when her face is scrunched and sad and embarrassed. I still look like Jennifer Aniston, but now only when she is greasy, and dowdy and acting as if she is a woman with a chronic pain condition. The difference now is that I am a woman with a chronic pain condition, who on some days cannot help but leave the house when I am still in horrible sweatpants, matted hair and bare face. When I cannot help but grimace and cry instead of smiling politely.

Seeing Jennifer Aniston this way, this mirror of what I sometimes look like now, was ego-crushing. In this movie, she does look awful. Purposefully so, but still. So I can look pretty awful, too. Even if I don’t witness it myself, because many days I don’t even look in a real mirror, it is still there. I cried some. I growled that Jennifer Aniston wasn’t really sick, just pretending, but I was. So I might always look this way. Obsessively swiping through images, searching out all the horrible things said about Aniston’s appearance, cataloguing the disparaging adjectives, showing the pictures to my husband against his will: the tailspin I let this put me in was ugly.

Despite the compliment from my teacher, I absolutely can be vain. I don’t think I can get around that. I can give myself a break and say, “There will be some days I feel like shit. And sometimes that will show. And that is okay.”

And… despite being flattered by a teenaged boy when I was a teenaged girl, I can still decide that he was wrong, and that I look like no one but me. Mercifully I have the power to release myself from any comparisons, good or bad.

Lists

~ Kristin DeMarco Wagner ~ Leave a comment

Binders

I seemed to have a difficult time making up a Christmas list this year. I had requested a couple of books (Humans of New York and one with close-up snowflake photography by Kenneth Libbrecht and Patricia Rasmussen) and nice white binders for my recipe collection (I know you are jealous! But, seriously, I love them). I remembered that my one pepper mill was broken, and there was a small charm I wanted. But beyond that, I didn’t have a grand wish list, which was beginning to annoy friends and family.

I’ve done a better job, I think, of letting myself get the inexpensive things that either I need or that would make me happy throughout the year. The cheap extra pair of sunglasses I keep in the car or my purse, so if I’m foggy and light sensitive I do not break down sobbing over misplacing the only pair I have. One extra pair of jeans, so that if laundry day is late I’m not faced with only having a dirty or chalk-covered pants to wear. A song I like downloaded on a whim. A treat purchased because I would like a treat. I don’t have the same backlog of needs or wants that I used to, and I hope do not take that for granted. I am very lucky.

The other issue is, really, that most things I want cannot be bought or given. I really am not trying to be coy or philosophical here, expounding on the important things money can’t buy. In totally literal terms, I want dairy-free candy. Dairy-free candy is really hard to come by.

This note was even in my stocking at my parents’ house:

santa

I assured Santa that the IOU was totally not necessary, and on my end I took the time to make a ton of dairy-free Christmas cookies.

But the other things I want, no one else can get for me. If I want to feel reasonably healthy, I am the one who needs to exercise and go to bed on time. If I want to feel sane and calm I am the one who has to reflect and journal and type and prioritize and set boundaries. I get enormous amounts of love and support from my husband and kids and family to make those goals a reality, but they cannot do those things for me. So as Christmas approached my resolution list grew much faster than my gift list. Here are a few:

My Resolutions for 2015

  1. Remember that an hour spent away from the kids to exercise is better than being mentally and physically checked out for a whole day.
  2. Try not to talk about my physical symptoms so much in front of the kids. My oldest now tells us about every tiny paper cut, abrasion or hangnail he has all day long. I suspect that he sees griping about aches and pains as a way Mommy gets attention, and is replicating it. I don’t want that to be my only narrative, and I don’t want him to become a hypochondriac.
  3. Be ready to take a good hard look at why the house is constantly messy. Be ready for some hard realizations about myself and how I operate, and what I model. When I spent all my time cleaning, before, I was able to have a clean home. I don’t have time for that anymore, and need to look at not making the mess in the first place. I don’t know yet how to do that.
  4. Be brave enough to admit that I do not know how to do my hair or make-up. I probably should have learned at 14, but I didn’t, so here I am twenty-some-odd-years later wanting to figure it out and knowing I’ll endure all those teenage mistakes in front of other moms at drop-off and pick-up. I would like to look more polished on occasion.
  5. Eat less fried food. I like fried food.
  6. Remember to be me.
  7. Eat more vegetables. More vegetables that are not fried. See #5.
  8. Teach my kids about religion. My goal for next Christmas is to not be sitting in a booth at Steak ‘n’ Shake in December with my five-year-old asking, “So, who is Jesus again?” They should know, they should know the religions that shaped the world, they should know why people believe and what they believe.
  9. Watch more movies, listen to more music.
  10. Make and eat pecan pie before 2015 is out. I did not make myself dairy-free pecan pie this Thanksgiving, and I regret it.
  11. Make sure I tell the people I love that I love them more often.

The things I want most have to come from some action on my part, which is exhausting. But it also makes me realize how much power I have to shape my own life, for better or worse all year long.

Punishment

~ Kristin DeMarco Wagner ~ Leave a comment

workout

I would like to add an author’s note here.  This post was written before the controversy around 19 Kids and Counting, before we knew that Josh Duggar had victimized his sisters and other young girls, before his hypocrisy in condemning homosexual couples paired with him soliciting extramarital affairs.  I could take this post down, but I still feel a connection to the idea that we sometimes punish ourselves with TV shows and Instagram accounts and celebrity reality shows, taunting ourselves with what we can’t have.  For the record, I did seem to think they were doing a good job raising children and am currently shaking my head realizing that all I knew was an highly edited version of their lives-not what really went on. 

I used to watch 19 Kids and Counting each afternoon when I exercised at our local rec center. And by “used to” I mean I watched it daily up until a week ago.

The Duggars kind of fascinate me.

Obviously, their life is very different from mine. Rural Arkansas and its lack of diversity is a different world from the suburbs of Chicago, and as a one-time public school teacher I don’t really agree that homeschooling is the way to go, and I generally wear pants and low-cut tops whenever I feel like it, modesty be damned. Their Christianity doesn’t resemble mine, especially when I mix it with Buddhism or scientific inquiry. Oh, and I have seventeen less children than the Duggars do.

They seem to be good parents. I understand how reality shows can be edited, but from what I can see they instruct their children with patience and love. They seem to be thoughtful about how to foster good relationships and how they instill values like kindness and respect and purpose into their offspring. I quietly cheer them on when I hear more kids or grandkids are on the way. These are people who want children, see them as a blessing and seem to know how to raise them to be decent human beings. I got to see babies and cuddle them vicariously as my own got older and older. I got to see how excited these women were to find themselves pregnant again.

I had to stop watching this show.

Watching it was a way of punishing myself, flooding myself with images of a chapter of my life that is closing. It is unlikely, very unlikely, that I will be having any more babies. Having fibromyalgia is difficult with two fairly independent children; I cannot imagine how much pain I would be in going back to newborn days when sleep deprivation goes on for months and months. And, according to some blood tests, the chance of me even becoming pregnant again is very low- as low as it would be for a woman ten or fifteen years older.

I have been intensely angry at my body, though I hadn’t realized it.

I have quietly and persistently been furious with my body for all of the things it cannot do. I am angry when I can’t play at the playground with my kids or take them to the pool, when at a fun run I am even slower than a three-year-old and a woman who is recovering from surgery, when I can’t stay up late without major consequences. I am furious at what I can’t have: the shoes I can’t wear because they jar my spine, the food I can’t eat because it makes pain run up and down my arms, the plans I have to cancel because I cannot do one more thing.

The babies I can’t have.

Not that I was planning on having more anyways.

Watching the off-the-charts fertility of the Duggars was a super subtle way of admonishing my body, reminding it of its shortcomings. That I watched it while exercising, which I don’t want to do but I have to do every day so I don’t feel even sicker, was the sneakiest way ever to be mean to myself.

So, I stopped.

It’s a small turning point, one that would be invisible to the people who see me on the elliptical machine every afternoon, but I think it’s an important one. And so far my body seems relieved that the activity I put it through every day isn’t rooted in so much anger and disappointment. It feels happier.

Spanish – Italian Lessons

~ Kristin DeMarco Wagner ~ Leave a comment

Farfalina

“So, Mommy, did you know that farfalina is Spanish for butterfly?”

“Um, what? No, that can’t be right.”

I have a horrible know-it-all habit. Whenever my kids tell me something new they’ve learned that isn’t totally accurate I feel compelled to say, “Actually…” and then I correct them.

“Actually, mariposa is Spanish for butterfly. I thought I remembered that from high school Spanish. I mean, give me a second and let me look it up but, no, yeah, no, farfalina is Italian.”

I am not sure why I have to be right all…the…time…

“Yeah, kiddo, I’m looking at my phone now. Farfalina is like the word farfalle, you know, the bow-tie pasta that looks like butterflies? Who told you it was Spanish?”

“Our neighbor.”

“But she’s Italian! She learns Italian words all the time. Why would she say it was Spanish? Spanish and Italian are both based in Latin and they are similar languages, but in this case they are different. I even had a student named Mariposa in Texas, who was Mexican-American and I had asked her about her name.”

My eight-year-old tried to defend her by saying, “Well, maybe I remembered it wrong.”

I finally stop talking and let him wander off to brush his teeth. In the quiet I realize something.

“Well, maybe I remembered it wrong.”

That’s what it is.

That is why I keep badgering him, why I can’t stop being right. That’s what I am afraid of, not that he remembered something wrong, but that I have started to remember things wrong.

A few years ago I had an MRI of my brain. We were looking for dark spots that might indicate a tumor, or perhaps Multiple Sclerosis. I had been losing words mid-speech, writing sentences that didn’t make sense and assuming I had read something correctly when I hadn’t. I felt drunk when I hadn’t had a drop. I tasted salt when there was none. I nearly scalded the boys because when I tested their bath water I couldn’t feel how scorching hot it was. I could no longer assume that any part of my brain was allowing me to process or understand the world correctly.

We didn’t find anything wrong.

I was later diagnosed with fibromyalgia, which mostly means that the doctors don’t quite know what is going on. Without understanding the mechanisms of it, many of us get a sensation called “fibro fog” which pulls a mist around our minds and makes it hard to function. I don’t get this sensation as often as I used to, though for a while it was such a part of daily life that I felt I might have Alzheimer’s. It only happens once in a while now, but when you can’t read to your kindergartener without transposing a bunch of words, it is still quite disconcerting.

With regards to my cognitive function, everything I’ve learned (or thought I learned) since I first started having symptoms is suspect. I often think I’ve filed new information in the correct part of my brain only to realize later on that I haven’t. When I find I might be wrong, I scramble like mad to check my facts by searching my memory and the internet. I do detective work to reassure myself that I didn’t screw it up.

So going on and on about the many ways I was absolutely certain that mariposa was the Spanish word for butterfly and farfalina was Italian felt necessary. It felt good to be able to track so many neural pathways that brought me to the same conclusion – I was right. It felt so good to know that I haven’t totally lost my mind, at least not yet.

But…

I know this isn’t a good thing to be doing to my kids, whatever reason I might have for doing so. And now the boys do the same thing to me. I’ll make a comment about how pretty the full moon is and I get…

“Actually, it isn’t full yet. It won’t be for another day.”

Or I’ll compliment one of them on a drawing I assume is just a bird and get…

“Actually, this is a Peregrine Falcon. Couldn’t you tell by the talons and how he’s swooping down with lines behind him like he’s really fast?”

It drives me crazy! I can’t say anything without being corrected for being inaccurate. My know-it-all karma has given me back know-it-all kids. Fibromyalgia or no fibromyalgia I have got to slow down this impulse to inform and correct before it gets even more out of hand.

But, actually, did you know that the Spanish word for fibromyalgia is just fibromialgia? And that the Italian is exactly the same? And that a lilac-colored farfalina is its symbol?

Maybe I can’t be stopped.

Sick Days

~ Kristin DeMarco Wagner ~ Leave a comment

medicine

The weather changed. The air got colder, rain fell for days. Each night this week a little hand would reach out in the dark to find me. My little guys would discover that I was still there sleeping right next to them, and feel comforted enough to know that they could try to fall asleep. I would know, as soon as they did, if their barking cough turned frightening; they wouldn’t have to try to call for me with no breath left.

We kept the window open a crack, a towel sitting right up against the threshold to catch rainwater before it flooded the inside of the house as it had flooded the street. The cool damp air helped us all breathe better.

It was just the three of us for days. Both boys missed a whole week of school. My husband had gotten on a plane for work on Monday. Between the rain and our colds we stayed home doing just the minimum to get by. Watching movies. Taking medicine. Eating food. Sleeping. Cuddling. It was as if we had stepped back in time, when I was a stay-at-home mom with two small children too small for school.

For this one week we didn’t rush anything, not waking or dressing or eating or thinking or deciding or cleaning or bathing or bedtime kisses. When homework and playdates and PTA folders disappeared, other things reappeared. Well-loved toys that had languished in the back of cabinets now spilled out all over the living room floor, useful again. Movies that we had outgrown, at the oh-so-mature ages of five and seven and thirty-five, got new viewings-with popcorn when our scratchy throats could manage it. I got to go back in time, to when coloring with my child was part of my job description, and napping with them was an important part of our daily routine.

When they were so small and helpless before, the isolation of these sorts of days had felt stifling and dangerous. The responsibility for their health and safety weighed so heavily on my every move, and the length of the hours taxed my soul.

Now that these days are a pause from normal life, rather than normal life itself, I am able to see the gifts those long sequestered days had given them and given me.

I know them better than I know almost anyone else on earth.

We had time together to just be, before clocks and schedules ruled our days.

They know that they only need to reach their hands out a little ways for help, and I’ll be there.