Refractory Epilepsy

Epilepsy Awareness Month. Day 2!

Refractory epilepsy simply means seizures that aren’t controlled by medication, and to be diagnosed with epilepsy one has only to have two or more seizures. That’s it, any more than one and you get the prize. It doesn’t matter how the seizure presents or the cause. Just have two or more and BAM! Apparently, or at least according to the first ER doc to see our little man, “everyone gets one!” After one, however whether because of injury, genetics or otherwise, the patient is officially diagnosed with epilepsy.

For most people, one med is enough to keep them from ever having another seizure.

For my son, nothing has worked to stop his seizures. Refractory epilepsy is his official diagnosis.

There are different types of seizures. Some are caused from injury or detox. Some are caused by genetic disorders or come in combination with other conditions. And then there are those cases in which there is no earthly knowledge of cause. As is with Buddha, we are waiting for science and it’s noble doers to catch up and rescue him! God knows they’re trying!!!

Buddha has a handful of seizure types. Tonic clonic, generalized, partial, myoclonic jerks, absence, and subclinical. Everyone has the potential to seize but most people’s brains have mechanisms put in place to stop the firing from turning into seizures. To prevent misfiring when the body doesn’t have those mechanisms in place, there are hundreds of medications people can try. Although most are just variations of the same handful of drugs created to work by how body’s metabolize the chemicals. There are also no drug trials for children’s Epilepsy drugs. Kids are always growing and changing so there’s no way to set a baseline. Its all trial and error. It’s a clumsy dance in the dark where we hope to find a positive connection…that doesn’t lead to a spark.

For most people one med is enough to keep them from ever having another seizure.

Because Buddha’s epilepsy is refractory, he has to take many different kinds of meds and consistently switch to new ones as his body works around the seizure fighting components of the latest and sets his brain ablaze yet again. Finding the right combination is like winning the lottery. Let’s just say, the odds are not in our favor.

Buddha’s seizures, besides being debilitating and dangerous, cause development delays and emotional outbursts laced with anxiety and confusion. His medication causes behavioral side effects, metabolic side effects, fogginess, confusion, exhaustion, attention issues, emotional regulation issues, and more. He is also on a diet that keeps him from eating ANYTHING normal and gives him intestinal issues and acidosis if not maintained perfectly.

Even with all this vigilance, his brilliant team of doctors, the miracles of today’s modern science, of which there are many, and the constant maintenance by us and his caregivers, he still seizes almost every day.

When his body metabolizes his meds, they either make him toxic or his body burns through them in a way that renders them barely effective. We’re out of meds to try at this point, so we mess with dosages regularly.

That is the short hand version of his story.

THAT BEING SAID, he is at home and not in the hospital! So, thank God for the benefits the meds do provide, even if they can’t stop the seizures completely. He is home, he has friends, he is learning, he has fun, he ice skates and plays baseball. He smiles and he knows he’s loved. He knows he’s good! He knows that he is a good person who did nothing to deserve this.

At least I hope he knows that! After my prayers for a cure, It is my greatest wish.

Somehow, he gets up most days with a smile on his face and super powers in his back pocket. Some days are even really good and he makes it through without a hitch.
It’s not a normal life.

It’s not an easy life. It’s not as bad as it could be…as it has been in the past.

He’s alive and he’s amazing! And even though he swallows handfuls of meds every day, even though he’s often confused and his “brain is going backwards”, even when his heart breaks with overstimulated taxation or he has trouble carrying on a conversation, he never gives up. He believes he can do anything!

He still seizes almost every day.

Fake It ‘Til You Make It

Last night was a rough night. Not the worst, but a bit awful. Buddha was restless and sad with nightmares, agitated and confused with seizures. We were up and down the stairs throughout the dark, new day hours, shuffling to be alert for him but pretending to be asleep so we could attempt the day. He ended up in our bed just as the sky began to light with the reminder that life doesn’t stop for seizures.

This is what I refer to as a Fake It ‘Til You Make It kind of day.

I will put on some cream and fluff up my hair. Hopefully I will remember to brush my teeth. I will lift my voice to smile my good morning, and I will tell my son how proud of him I am for making it to school. I will acknowledge how hard it is to be a kindergarten teacher as I give his a companionable wave, and I will fake it. For him, for me, for hope, I will fake it. I won’t do it all day, I’ll have to lie down a bit at some point, and I’ll be really glad when the day is over. But for the rest, I will fake it.

It has taken many years to accept this Fake It ‘Til You Make It motto. I have self-worth issues that don’t care about intent or that my son is sick. My Odyssey arrived in boiling waves from which I may never cool and learning to fake it here and there saves me, at least on a day-to-day basis.

As is with any valuable test of character, if you work through the hard parts you do end up wiser, humbled, and more grateful. I have also ended up fatter, sadder and more tired, but I am definitely humbled, and I am, without a doubt, grateful for every precious moment. I’d like to think I’m also a bit wiser. I try to keep my eyes on the sky so as to not get dragged down into the blistering tide, and I have learned that, sometimes, to get though the hard stuff you just have to relax and pretend you know what you’re doing. IE: Fake It!

Here is my history with Fake ItTil You Make It.


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I knew it, I knew it, I knew it. Damn it, why didn’t I trust my gut? Since that defining moment on the stairs at fifteen, I have known the infamous Fake It ‘Til You Make It motto is a crock.

I was leaving for yet another pep-talked, face your fears and express yourself, socially terrifying day of high school when my mom stopped me mid step with one simple but scarring sentence. A sentence I bore nobly as I carried those burdensome six words with me until…well, last week. She worried about me, was confused by me, and, I think, a little embarrassed of me when she said,”Is that really what you’re wearing?” I either try too hard or don’t care less. I’m either over dressed or barely dressed at all. It’s my thing. That day I had on what I thought a creative, let’s say theatrical, ensemble. It was, obviously, not the typical wears of a Newport Beach High School Student, but when you already feel unremarkable in an all too remarkable high school, this is probably not the best tactic to help your daughter feel likable.

Hard Polish honesty she calls it, and she can’t help it. This was her way of hinting, not so subtlety, that maybe letting people get to know the real me before swamping them in my creative effusiveness was a more effective social plan than puking my need for approval all over everyone in my path. I guess in all fairness, I’m not very subtle either. Self reflection aside, I plopped my foot down aghast and threw a perfectly timed hand-on-hip-smack pose. I sighed my reply through clenched teeth and said, “I thought the point was truth. I thought I was enough for people to like me for who I am!” I wanted to scream at her, “Make up your mind! Either they accept me and like me for who I am because no one should change for someone else’s approval, or I should change my clothes immediately because no one could like me in THIS outfit, even though I am a perfectly likable person.” It was beyond confusing.

She said, “Yes… Buuuut..” There’s always a but. Why is there always a but? “You don’t look like you like yourself,” she said as I shifted defiantly yet defeated down the stairs. “You just have to fake it ’till you make it, baby!” I’m sure she said she loved me as I carried my hurt out the door, but…

All I heard was the “but…” All I remembered were those six cursed words. And worse, faking it felt like hell! It felt like a lie, like a major betrayal to the angsty teenage existential journey I had every right to suffer through. Didn’t I have a right to ignore, explore, discover, and design the me I was going to be? That is, if I ever escaped remarkable high school to have a chance at becoming anything but insecure and unremarkable me?

It’s a piece of crap motto.

It’s complicated. Confidence is complicated.

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For a little more background I will concede to the words of my grandmother, “Consider the source”! It makes sense this silly phrase has kept me tied up long into my adult life. I was always a big feeler and easily hurt, a young soul with a wise beyond her years body of experience and keen observational powers, but absolutely no innate logic to back up and organize the collected emotional data. Let’s just say, I forged my own path. I have perfectionist issues. My therapist is working on them.

My dream was to be a great actress, and not just because I liked the spotlight since that’s pretty obvious. No, it was so much more. I wanted to be more. Acting was bigger than me, it was a pull I couldn’t explain, a calling. I was going to explore and illuminate the human condition to make the world a better place and offer a real glimpse behind the looking-glass. I was going to always live in the moment as my most authentic self, and so by doing prove my worth while enchanting the atmosphere of those around me to a breathable rosy glow! I was going to be remarkable. I wanted truth, fairness, and right above all else.

You can see how faking it was a shameful, unforgivable surrender for which I didn’t deserve to suffer.

With my spiral permed hair, crazy powerful belt voice and stellar hip slinging abilities, I couldn’t fathom the point in faking or holding back my feelings. I was desperate to believe true friends love you for who you are not how you look, and that success comes from intent and heart more than vanity. So, I left the house, many times over, in a bold statement of individuality, crazy hair, mismatched fabrics that couldn’t pick a season, and, most likely, foundation lines wrapping my jaw line.

So, I left the house in a bold statement of individuality, barely brushed hair, conflicting fabrics that couldn’t pick a season, and, most likely, foundation lines wrapping my jaw line.

I knew it then as I believed it still many years later, it’s a piece of crap motto. And I tested that belief, full out until it broke me. Until I finally realized that not everyone deserves to think I am remarkable. They simply aren’t worthy my particular remarkableness.

Last week.

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Twenty some years later, standing on the other side of that particular existential journey while knee-deep in yet another, I have begun to once again pick apart the pieces of those six words and what they mean to this version of myself. Now, after this last year of hell I fully appreciate its benefits. Now I see that Faking It ‘Til You Make it doesn’t actually help you make it, it simply holds your place until you do. I can accept and appreciate the idea that how you present yourself is a testament to your relationship with your inner voice and should be exhibited with appropriate respect due someone who is still standing.

This means work, lots of work being done in the background. And it means time. Lots of time to let yourself feel and heal and rest. Faking It also doesn’t, as my younger self believed, actually mean you are laying a foundation on which the stones of Making It are built. It just means you’re faking it. That’s it. The part I missed was that, that’s OK. At least you’re doing something to get yourself off those stairs and out the door. Because on any given day you don’t 100% know what awaits you in the outside world. Sometimes, faking it is the best we can hope for to hold our place until we can make it home to ourselves.

It’s still a piece of crap motto, except when life breaks you down in ways you couldn’t possibly imagine and as you meet the many different versions of yourself you will become over the 20-80ish years of your life, and you finally understand it’s not just about your own angst but global angst, and worse, your child’s suffering. Then the “but” is sometimes all you’ve got. Then, it’s time to take the Fake It all the way until you Make It! Until you like what you’ve made, or at least can live with it.

It’s a piece of crap motto until the hurt piles up and you realize it’s actually a life line disguised as a meme.

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Fake It ‘Til You Make It baby. At least you’ll still be standing. And to stay standing is the first and most important goal. Survive first, help your child survive, then figure out how to love yourself. Maybe those last two are a tie but I don’t know any mother who worries more about her own self acceptance than her child chained to a hospitable bed. For that matter, no mother whose child is getting bullied, getting hurt or falling in love would put herself first. So, survive first, love yourself next and everything else is a miracle. Remain standing, for as long as you can.

There are those who “Make It”, standards to aspire. Even as I know they too have doubts, there are those who harness their power for good but aren’t ass holes. Those who actively contribute and believe that life is more, much more, than defending oneself against a boiling tide, or preparing for the probable zombie apocalypse. They know it’s not for us to see the grand plan. (FYI, I have been informed that if the zombie apocalypse does come, I will be thrown to them first as an escape opportunity for the rest. I am, apparently, too easily startled and expressive and will, for sure, get us all eaten. I can’t fake my way out of that one and I’ve accepted the sacrifice.) 🙂

There are those who make it home to themselves and truly live in the moment. They are the ones who know that This Too Shall Pass is the real motto and everything else is just a place holder. They know that Fake it ‘Til You Make It is a kind of OZ loading zone that keeps you safe until you discover you had the power to get home all along. And sometimes, many times, that power comes from simply surviving, so you have to Fake It ‘Til You Make It because This Too Shall Pass.

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I, at least, now understand that if I’m faking it, it doesn’t mean I am a fake. I understand that by faking it I will live to fight another day, for my family and my son, and for myself. To appreciate my son’s milestones and be present for his struggles because I faked it when I needed to is now something of a badge of honor not a stain of lacking.

I feel in, now, coming to more realistic terms with this thorny motto, I will move forward on surer feet and that I am remarkable in my own little way. Maybe it will even help me survive the zombie apocalypse my husband is sure is coming.

I have made it so much farther than I ever thought I would and ended up nowhere near where I expected to be. I guess faking it is enough until you make it, because, although, maybe home has been with you the all along, it’s a hell of a trip.

Now when I need to, I Fake It ‘Til I Make It. I fake it because nothing lasts forever, and because This Too Shall Pass. I fake it because a placeholder is better than surrender, and because it feels really good to finally get home.

This is as Bad as it’s Ever Been…It Could be Worse

I know it’s easy to do, I don’t think we can help but do it, at least in the back of our minds, but please don’t tell me your child is sicker than mine. Please don’t look at me with your raised forehead and cornered eyes that tell me your anguish cuts sharper or deeper, or, worse, that your child suffers more than my own. Please, please, don’t compare our pain and pick apart our differences to prove you have it worse. Because…you do!

Your suffering is greater. Worse than mine by far!

Your suffering is greater because it is yours!

It’s not that one disease is more dangerous or painful than another, or that one of us has been going through it longer or lost more. It’s not about who wins. You win. I win. We all lose.

This is as bad as it’s ever been, at least for me. But, I also know, it could be worse. It can always be worse. So, be with me in heart and I will be with you in love. Loss and fear win when we compete. Loss and fear win when we disconnect. Loss and fear win when we forget it could always be worse.

Your suffering is far more cutting and deeply felt than mine…because it is yours.

IMG_5930I am not an expert on any of this! Buddha’s epilepsy was a cracking smack down that left us humbled and shaken. It was a quick violent theft that not only took money and things, but whole chunks of our hearts. Overnight, it left our lives in tatters and lead us trudging down a path we didn’t start out on. I am as lucky to make 2 sentences fit together as I am to be any sure help in lifting you up through the constant fear and artful struggle that is caring for a sick child. But I want, sincerely, to try! I want to try and help because I feel that in the trying, even just a little, our shared cruel pain may connect us, and maybe do some good. It may help us find each other, and through each other we might find a little more of ourselves, we might be a little more OK. If we hold on to each other we can smack back and crack open a thin glimmer of hope, we might begin to rebuild our hearts and, one day, take a free breath again.

The only way I can force myself to do this is to remind myself it could always be worse. To find SOMETHING to be grateful for, no matter how trite or small. To try and see the good.

I think it just matters that I try, or at least that’s what I keep telling myself.

When we were in the hospital with Buddha for the third time in as many weeks and he..tanked, I remember thinking how surreal and a bit crazy it was that I continued on as if it was a perfectly normal routine. To sleep on the sterile purple plastic sofa under scratchy bleached sheets while my husband half hung off the hospital bed to which my son was tethered became instantly normal, too easily expected. Those were the days our son was in status. Those days we had only a handful of options and very little control over any of them. Those were the days where every second felt like an eternity and he could either stop seizing, be intubated and put into a coma, lose cognitive function, or…well it could have been worse.

The ninth floor of CHOP is the top floor for inpatient pediatric care, every trip up the elevator the doors open to the NICU, the Cancer Ward, the Cardiac ward, and so on, until the doors open on the ninth floor, neurology. Our floor was never bustling in the same way as the others, the energy was still, the halls quiet. Except for an almost inaudible hum it almost felt like a hotel. The difference was the hum though, it was the hum of holding ones hope on a squeezed tight breath. A breath that moves but doesn’t release, replenish, or relieve. We never had the crazy alarms or the padded pounding of nurse’s shoes running to rooms with resinating code calls. Nine South is a quite ward and it’s emergencies seem to linger, to tease, rather that stop a heart or shut down an organ.

Nine South is the floor of wait and see. It’s a hell all it’s own. I remember one midnight at least six doctors standing around the computer with only the screen lighting their silhouettes and thinking, “They’re so calm. It’s all so normal. How is that possible?” It was as if they were weighing breakfast options before an early morning board meeting not a midnight life threatening, seemingly unanswerable, problem.

There is no quick fix for us. Neurology is the floor of trial and error, of guessing, and of wait and see.

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Ironically, this hell is what lead me to see how much worse it could get.

Because I could peer into other’s rooms and feel the hum of their held hope, or see the quick pain of their waiting, I realized that, although, we were now in a “private club”, we were not alone. Every time I made a trip down those halls or watched the elevator doors open and close, I thought, my God, it could be worse! I saw it and heard parents from every floor say the same thing. I can’t fathom how watching my child’s body shut down until he couldn’t speak, see, walk, or hold up his head could get any worse, but somehow I knew, I was aware that it could most certainly be worse.

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It’s a fine line to walk, balancing panic with gratitude. It almost feels like a tricky dark magic. A half land. And good lord there were people much braver, more humble and Godly than I waiting and somehow surviving. But walk it I did. Or, again, at least tried.

Knowing it could always be worse does not lessen my pain or assuage my fears, but it does help me keep a bit more present. As terrible as it sounds, and as guilty as it makes me feel, I think it gives me hope to know it could be worse. It’s a hard struggle to suffer and know you’re lucky all at once. It’s an active choice to try and make room for those opposing feelings.

We’re all there, in our own way, holding our breath, desperate to crack the air until it damn well gives us emotional circulation again.

So let’s decide, together, if we could please, that things are hard enough and we don’t need to compare. We just need to be thee for our kids and for each other. Under all the differences we ARE the same and we understand each other as few ever will. We are in this together and for that I am also grateful…and sad.

I know your pain is greater than mine and my pain is greater than yours…because the pain is ours.

But, It could be worse.

 

Give and Take

In life, I believe, there is give and take. I also believe that without give and take, we shrivel and die. Well, we die anyway, but without give and take, I don’t think we really live.

I’ve been thinking a lot about this, about how relationships thrive when there is give and take. Countries reach peace when there is give and take. Crops grow stronger, heartier, with only the perfect balance of give and take. They take nurture and care, fuel and attention to grow and they give us sustenance. Life.

Sometimes the good guy doesn’t win, but in the end, the bad guy doesn’t either. It’s all about how we ride the line.

Through the ups and downs and give and take of life, I have tried to become a better version of myself. More often than I hurt a loved one, stood by judging apathetic and angry, shut down entirely, or drank myself into nothingness, because I have done them all, I’d like to think I at least tried, more than I didn’t, to give. In the spirit that happiness or success was found through giving I did my best. That’s the crux, I think. To give without giving in. To take without be taken over. I believe it still. But I lived through trial by fire to speak my truth with confidence.

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Some of life is choosing what and when to give and take, and some of life is choosing how to react to both the low, holy crap moments and the high, magic Christmas moments that come our way faster and harder than we could ever be strong enough to survive intact. I am not saying I’m good at either, but the options exist with or without my choices.

I was traveling my route of give of take, life and lessons, without doubt until one day all the rules changed. One random day the seizures started, and then day after another and another and another they continued to come. They didn’t give they only took.

When Buddha got sick, when the seizing began, so did the taking. I wasn’t being tested, I was being stripped. I was relieved of my sanity, my faith, my place in this world, my marriage, my relationship with my son, of my little boy himself. All I had been given was slowly, and with cruel precision, taken from me over the endless hours of each endless day of that turnpike year.

I could never have been ready for the year my son was taken from me.

It was the year of Take and I almost didn’t survive.

Almost.

I did survive. It changed me and beat me, but I survived and I believe it’s partly because the years I had to practice, to hone, this give and take philosophy.

Since my first sense of awareness I have been a teacher, an observer, a listener, a person picker-a-parter, and a curious dissector of human emotion and behaviors. Life, to me, has always been a series of manic swats between trying to understand our human nature and trying to fix the hurt. I have come to wonder lately how much experience I missed in my picking apart our emotional drives and cracked mental sidewalks. I’ve come to wonder if it was worth it. Did I spend so much time being a picker, for I am truly a picker, that unless I was on stage, I could never sit back and enjoy, just be? I can pretty much attest to that as truth. Except for a few precious moments, mostly memories of my family, there was always more picking than being.

Growing up I figured it was because I wanted to be a star, to shine on a Broadway stage, and that acute awareness was my innate drive routing me in the right direction. I did shine on stage, but the lights dimmed for me. Or rather, I took an early exit. I never lost the need to pick apart character but my objectives changed and so did my dreams.

It turns out this need to uncover why people hurt each other, how we love, and why it takes so damn long to evolve and grow peaceful within ourselves was because I was being groomed for the role of a lifetime. I was given the proper back story needed to become the mother of a son with a “condition”, a boy with special needs.

“I was given the back story needed to become the mother of a son with special needs.”

It has now been over a year and the seizing continues and so does the taking, but, as I had once believed to be true, so again did the giving begin. So did the universal need for balance begin to shift my experience and Buddha’s health trying to right itself. I don’t think it ever will balance, completely, but, at least, the cycle was beginning to churn once more. This diagnosis, this epilepsy, this backward-brained-heathen hasn’t made life easy or fair, but in many profound ways it has made us better. For all it has taken it has also given us much, or at least that’s how we choose to see it. In a way, it has given us each other. And depending on the lens through which I choose to view my situation I can see a Hell of Holy Crap or one damn magical Christmas. I can’t ignore the pain, the unfairness of it all, I can’t ignore the hole that now permanently vents my soul, but I can chose to experience the magic. To be in the magic of the moments we get.

“What I’ve been given in return for all I’ve lost.”

WHAT EPILEPSY TOOK AND WHAT IT GAVE

  • It gave me insight.
    • I took these lessons and I am better for it. I learned that I am stronger than I thought but not nearly as strong as I presumed.
  • It gave me new lenses to view life.
    • I take in the magic of life as I never have before and now even the air looks different. When I step outside my house each day, or every few days, as one does who cares for a son with special needs, I am embraced by the sheer miracle and impossibility of it all. Yes, the son I knew was taken from me and I will never fully adjust to that, in a way I will never recover from it, and yes there are many days life is a sucking dark parasite. But my appreciation for life was also fortified beyond measure because of this loss. If you want to appreciate every molecule of every day, know in your bones it could be taken away in an instant.
  • It gave me patience. Kind of. Well, more than I had to begin with.
    • I take time now to slow down and catch my breath. When Buddha started raging I lost the option to blow up and react. It was that or lose my son.
  • It gave me do-overs.
    • I took permission to not be perfect. I am a classic perfectionist with abandonment issues. A day lost, a mistake made was a mar on my very soul until Buddha’s diagnosis. If we are lucky enough for another day then we can always try again.
  • It gave me the the ability to hold love and loss, hate and respect, fear and joy in both hands…and go on.
    • I took the opportunity to learn to hold conflicting emotions without it splitting me in two. Ok, that’s not true, I was split in two more times than I can count but somehow, I was able go on. I could come back together. I had to. I to for him, and I am better for it.
  • It gave me the chance to forgive.
    • I took the chance and let myself forgive. In my perfectionist way I couldn’t let go of hurts. I could see things from the offending point of view, I could even understand how it happened, but I could never let it go. Right is just right. Then one day, there was no room left to hold those old hurts and being right wasn’t really what mattered anyway. There was simply too much present pain. But when the cycle of give began to return I found that the old hurts were gone. I finally understood the freedom that people kept talking about when I let it go.
  • It gave me the push I needed to learn to love my husband in ways I would never have before. To take him for who he is and love him completely, even in the moments he leaves me wanting.
  • It gave me the right to create boundaries I didn’t feel I could enforce before.
  • It gave me friends and allowed me to take the strength they offered.
  • It gave me the freedom to accept and take help.
  • It gave me the freedom to stop the clock and start again. I could take the moment and start again as the woman I was then and there, not who I thought I should be.
  • It gave me love from a flawed and beautiful family. Even if it their communication was lacking in what I thought I needed, I could take their love and let it restore me.
  • It gave me faith.
    • When I see my husband, weary to the bone, never give up on us, never lose hope, my heart opens in ways I never believed possible and I take in a love that overwhelms me with gratitude.
  • It gave me perspective.
    • I took the pain to see the miracles. I can see that when my little man’s brain goes backwards his heart grows 100 times bigger, that when he can’t put two sentences together his knack for humor makes him the smartest funniest kid in the room. I can see now that when he falls down the stairs because he is shaking from head to toe he creates a little dance to pick himself up and keep going.
  • It gave me the most special son a mother could ever hope to deserve but never really be worthy of.

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Hysterectomy and a Hair Cut. 2 Bits

Stop me if you’ve heard this one.

A girl walks into a bar and says, “Give me something strong and straight up, my back is killing me.” And the bartender says, I’m sorry ma’am I think you’re confused, this is a hospital not a bar.” And the girl says, “Oh I know. Where else would I go to have my ginormous fibroid infested uterus pulled through my Who-Ha? But, hell, you’ve gotta have something fermented around here.” The bartender, looking concerned, says, “Maybe you should start with a hair cut? That always perks people up when they’re feeling dire.” And the moaning lady on her 4th cancer surgery leans through the curtain and says, “That’s hysterical”. And I say, “No, it’s a hysterectomy!!”

A hysterectomy and a hair cut. Two bits! (Look it up millennials 🙂 )

So, from this “joke” I have exposed two epic details about myself. Private details. Raw vulnerabilities. I have casually, callously, exposed pieces of my sicker sides in both mind and body. If I were you I’d be questioning if I should read any further because two things are now abundantly clear.

  1. I am a terrible, sick joke writer.
  2. I had a hysterectomy and got a hair cut.

(Not necessarily in that order.)

So, what do I do now?  I feel big changes coming, The flood gates are open!

So, what am I going to do?

I have no idea.

I can tell you what I won’t be doing. I will not be writing another joke anytime soon, I will not be birthing any more babies, obviously, and I will not be whipping my hair up into a high bun, maybe ever again.

uterus

I admit I am a bit surprised by this “What do I do now” question. I’m not sure where it came from as I had a tumor removed that just happened to be attached to my uterus (sorry for the gross display) not my soul. But this question has been poking at and bugging me since my stitches started poking at and bugging me, and it’s demanding an answer. It’s demanding action.

It seems getting a hysterectomy at 41 has approved a level change for me, an opening to the next phase of my womanhood, or lack there of, as the case may be. I mean, maybe I should throw a party and burn all my old tampons. OMG, Am I less of a woman now? No. That’s dumb, Kerri. Honestly, I am grateful to be rid of the thing. If that nasty mass was the host of my 6 year burdensome back pain and extra puffy tummy then take it and good riddance! Plus, they didn’t take my ovaries so I’m not hormonal. Well, any more than usual. And let’s be honest, between my age and the certainty with which the doctors believe Buddha’s epilepsy is genetic I wasn’t planning on popping out any more kids. Not that I popped out the first one. Nonetheless, this was the right thing to do at the right time. So what’s with the pestering subconscious?

I got my hair cut because it won’t stop falling out due to stress. I do look less like a hoarder, crazy person and am told I’m very with the times now, sporting my LOB, so that was a win. And I had an, albeit major, surgery that also removed even more excess baggage and I feel so much better for it. So it’s a win win.

But this question!

It won’t leave me be. Something weird has happened to me since becoming womb-less. It’s as if my surgery not only released my lady parts but there, also, began an unsolicited torrential purge of mind, body, and soul. (I guess it really is a gateway. HA! Sorry, couldn’t resist.) Everything womanly about me from my organs to my relationships began shifting, dramatically. Demanding Change! Calling over and over, “What do I do now? I don’t think I can go on as I was before.”

Maybe this shift is because a major, identity building piece of me and my younger fertile years are now irrevocably in the past. Maybe the fact that it was my girly parts being messed with made room for my inner emotional self to start messing with the spiritual things about me that make me girly, or womanly as I am now considered.

Maybe my subconscious figured that since the womanly flood gates were already open and I’d be laid up, forced, against every bit of my nature, to be still for a few weeks, this was the perfect time to take stock in my life and where it has led me, and/or left me at this point, as a woman. Either way, with my uterus suddenly gone, BAM, exploding from every pixel of my soul comes mom issues, wife issues, daughter issues, and all manner of woman issues I didn’t even know I had, ready to be addressed and relocated. The spunky girl goggles are now expensive bifocals (although vintage, sassy and cute) and nothing looks the same.

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So what do I do?

I have long talks with my husband who is very supportive but squirms every time I say the word vagina.

I book a girls weekend with  my sister.

I’m going to get a tattoo.

FROM THE TOP it will say. I love it!

Yes, I’m 41 not 21. No, I am not a tattoo person. Yes, I think it’s a great idea. No, this is not a midlife crisis. I don’t think. No, it’s definitely not a midlife crisis because I am not filled with doubt as I should be in a midlife crisis, and have been my entire life. In fact, it’s the exact opposite. Suddenly I feel like an Amazon Chieftess. Granted an older fatter, not quite tall enough Amazon Chieftess, but a bad ass nonetheless. I didn’t feel like that a month ago. Maybe the change has been in the works for a while, but taking its damn sweet time, and my hysterectomy pushed it over the hump. Either way, I don’t want to forget the confidence this shift is giving me, even if I don’t know exactly what to do with it yet.

It might be crazy, but it just may be the lunacy I’m looking for. (I’m full of the terrible jokes today, huh? Sorry Billy J.) Regardless, I am becoming rooted in my own sense of things in comfortable ways as I haven’t been able to before. For some inexplicable reason losing my uterus has not only made room for my other organs but has also made room for me to live my life without wondering what others are thinking of my choices. I am actually thinking for myself as myself. It is at once exhilarating and terrifying, but it’s awesome.

I’m sure I have always had this power but my ruby slippers just ended up being a sick kid, a tumor, and 41 long years. Whatever.

So what do I do now? A new job, a new hobby, a new craft?

Reinvention!!

No that’s not right.

Do Over!

No, not right either. Most of my life I don’t want to do over, especially some of those boyfriends in my twenties! And I’m extremely proud of my career even if I never reached the point I thought I should have reached.

I’ll just say, From the Top.

As in dance, each performance or day can be it’s own beautiful disaster, but when it’s done you have the choice to say, Ok, again From the Top. A 5, 6, 7, 8.

Here’s my chance.

So, What do I do now?

For the big picture? I have no idea.

Besides the hair cut and the booked sister weekend no major action has yet confirmed this change. I have eaten like crap during my recovery even though I didn’t want to, so I’m not any skinnier. (My weight has always been a bar for my mental health, so that was no help.) The doting husband with the ramen and the ice cream was totally worth it though. Oh yeah, I took the head of the table as an advocate for my son. Literally, I took the head of the table at my son’s IEP meeting and let everyone else flank my sides. This is the meeting where school teachers, shrinks, counselors, and the principle determine the services my son gets and what they think is best for him. And I did good!

Other than that, I have no idea what big changes lie in wait for my recovered form to pounce on and fill me with power and confident action.

Whatever I do decide, after I finish healing from the hysterectomy and then my tattoo, I hope it’s big and wonderful. I hope the confidence I am all of a sudden feeling takes up permanent residence now that there is more room both physically and metaphorically. Maybe as an added bonus I won’t have to pee every 20 minutes, Talk about a win, win, win.

I am curious to meet this new me. I am curious to discover her. I am excited to design her, set her on new adventures and see what she does!

I hope I like her. It would be nice, this time around, to like the woman I am.

Who knows, maybe I’ll become someone who learns to write good jokes! God knows, even without my hair or my uterus I’ll still have plenty of material.

Are You Lost Too?

Mom Disability Lost

I KNOW WHAT YOU’RE FEELING:

I know how it feels to be lost. To wake up one day and realize you aren’t who you were or who you thought you’d be. It’s as if over night you have become a depleted blob, robbed beaten, and sad. Viewing the street from the corner of your swollen eyes, I know how it feels to be blindingly terrified of much of ourselves we’re capable of losing. Once, of course, you realize you’re lost to begin with. It’s an epic blackout that plays more like a bad TV pilot than life. How is it that the rest of the world can go on humming forward as it always has without anyone noticing that you are not the same, that you are stuck?

I remember exactly where I was when I suddenly awoke and realized I was still here after months of numb periphery existence. I awoke in the same life but a different world. A sadder harder world, a world that took me in but didn’t give me a place to be, to feel, to live as the me I used to be…before diagnosis.

I was walking to”my” corner coffee shop, as I had done a hundred times before, and I noticed how when the light hit the pavement it suddenly felt like a decorated set on which the director just yelled action from some unseen on-high chair and not my daily grounding of repetition and caffeine. I remember thinking how the people I passed didn’t seem real, they were 3 dimensional but had no substance. I kept wanting to reach out and touch them to see if in fact they were the unreal ones or if, as I suspected, I was the out of place character in the scene. If I was the one without substance.

This new observation was an awakening to a hollow existence. I became overwhelmed by a sudden aloneness and everything felt off and everyone apathetic. A Twilight Zone land perfectly designed to subtly tear away at my sanity. To undo me slowly while some maniacal overlord played tick tock with my demise by making everything look and feel real and normal, but ensuring that I knew, in my bones, the neither the world nor I was or would would ever be the same again.

Awakening to life but with the knowledge that I would never feel safe again was both humbling and biting, a relief and a despair.

The, I-have-a-child-with-a-lifetime-illness world, is a world where you spend your days sprinting from one place to the next in a mass of panicked mania only to instantly drop and drag your soul from place to place, immobilized with your too heavy burdens. It is a place where fight or flight mode lasts for days, months, years while you try desperately to just hang on, only to finally awaken one day and realize you’re lost. Your innocent child’s destiny, all too starkly presented, is not yours to design and while you were coming to grips with that hateful truth, you’re body has changed, your passions washed out, at best, your friends don’t know the new you, your husband is a ship passing in the night, and it seems you have aged eons. It’s difficult to find words for adult conversations that don’t include medical jargon or prayers scheduled carefully around daily appointments. Your mind is numb and your soul is tired and you just want to rest and catch your breath. And your heart? Your heart is just flat out broken.

your heart has not forgotten you image

And yet, still, always, you are pulled along by an instinct, a drive, as old as evolution itself, maternal, searching, trying to understand this new foreign-illness-language.

You’re not who you were, you’re not who you thought you’d be, nothing is as it “should” be and you’re not sure you’ll ever be real again let alone rediscover your own spirit.

We’ve been there! We are there! We’re trapped here in the hell of being there and we too are dying to be found.

Please don’t give up, you are not alone! You will not be lost to yourself forever. You are STILL a wonderful, beautiful, unique individual. In so many ways, deep important ways that really make you more than you ever were before, your spirit shines brighter because you’ve made it here! You are a grown up with your own, feelings, dreams, thoughts and aspirations. With your own road to travel, not just your child’s. I know how it feels to be lost. I know how it feels to think you’ll be lost forever. I know you! I know how hard you’re trying but that times are hard because the kids are sick and they may never get better so there isn’t the luxury of self.

I know how it feels to be lost.

But…… even with all that, we can be found.  We can!