Seeing the Invisible

     Let's talk about AS, baby, let's talk about its effect on me, let's talk about all the good things, and the bad things, and what will be, let's talk aaaaboouuuut, AS, let'stalkaboutAS!  Ankylosing Spondylitis.  That's what AS is.  I was diagnosed formally 17 ago years this March. Posts about sickness, fatigue, struggle-- they're not very popular, they're not that interesting really, particularly to anyone but the sickee, I know.  But I have had people ask, people close to me even, who 'know' but really don't know.  I'm not sure that I should really care about the people who've been judgy, and probably talk about me behind the facade, but while I don't (really!), and I'm enjoying that freedom (really!!), I am also a pretty open person.  I don't hide the yard.  I might not invite you into the back drawing room or the bedroom, because privacy is ok too.  But like I said-- I'm not a recluse either.
     Ankylosing Spondylitis is spinal fusion disease.  It also attacks your connective tissue, basically destroying it.  It causes inflammation, pain and stiffness in your shoulders, hips, ribs, feet, heels, achilles tendons, and hands.  It can (rarely) move into your eyes and cause blindness and more rare, affect your heart and lungs.  Let's talk about what it's really like to live with it: real talk?  It sucks ass.  It makes you feel, when you're in a flare, like you have a terrible case of influenza.  You live with chronic fatigue.  Forget about your prior definition of what 'feeling good, Lewis!' is.  You probably will have less than 10 days a year where you actually 'feel good'.  You at once both look forward to and dread bedtime, because you're normal and need sleep (actually probably extra sleep) but when you lie down you feel all the aches and pain in your body, that you've ignored all day because you are able to distract yourself with stuff to do; when you wake up, if you've had the very rare night you haven't woken up a million times and/or lied there for a couple hours,  you feel like you've been working out all night and you're exhausted and stiff.    Like, really stiff.   The stiffness is something you learn to laugh at, because you have to, it's the giant monkey on your back--although you become very self-conscious;  you hold on to the walls when you get up to walk to the bathroom, worse at night but even watching TV.  You get up at a restaurant and always stand for a moment, pretending you're fixing your coat, because you know you'll stumble stiffly and appear drunk.  You learn that there are some things you can avoid, but just when you think you've figured out triggers, you realize it's haphazard and you just have to fly by the seat of your pants 99% of the time.  You can crash and burn in a matter of hours-- you start to feel good in the afternoon but by dinner, it's over.  You are extra clumsy, because your joints don't respond in quite the same instant manner as someone without AS, so you fall and trip pretty much on a regular basis.  You learn to suffer through side effects of meds.  You take a low-dose chemo that in the beginning, isn't too bad, but 17 years in, you have to sacrifice an entire day out of the week to it's after effects because long-term chemo still acts like chemo-- nausea, headache, extreme fatigue.  So you look at your week ahead and try to pick which day you want to feel like crap, and is it going to interfere with things you have to do, and should you skip this weeks? ( cough, and you may end up screwing yourself out of the necessary levels to help because DAMNIT YOU HAVE SHIT TO DO!)  It's not a vague diagnosis, at least.  There are definitive tests for it, for the most part, ANA, HLA-B27 gene test, etc.  Also, progression of fusion of the hip(s) and spine can be tracked with MRIs and xrays.   
     But you don't look sick.  For the first 15 years of my disease, I didn't.  I didn't act like it either.  The first years were spent in denial.  I was young, strong still, stubborn.  I was also on some major drugs but I continually argued with my rheumatologist that he was wrong, I was fine, it was just a virus I'd had.  Hahahahalolololol.  I also cleaned up my diet, started lifting weights in my early 30's, and was in general a pretty happy, contented person with fairly normal stress levels, or so I thought.  After a major infection I was able to go off of the big gun biologic drug and maintain for a long time with diet and exercise.  I rarely felt 'great', (and mornings have always felt like I have the flu every day), but I felt ok and I learned that powering through it, I usually was rewarded with feeling better after a run/exercise.  I learned if I waited for a day that I 'felt good', I'd never do anything, but that if I got after it, I actually felt better overall.  I also had some pretty good suppression going on after the biologic for a number of years.  By 2016, it was getting a bit tenuous but I was staying on the back of the horse;   then the nuclear explosion went off that pretty much cratered my life as I knew it.  By that I mean my daughter's descent into full-blown heroin addiction and my prolonged separation and divorce after a marriage that spanned over two decades.
     The thing about stress is, you don't really appreciate the effects of long-term stress right away; it, well, it takes a long time. You 'think' you're managing your daily stuff ok, but maybe you are, maybe you're not.  I had a shoulder surgery that didn't go as expected and really took me out of the exercise loop, I wasn't as regimented about my diet (I mean, when your heart is shredded and bleeding out daily, you don't necessarily want to go to the store for egg whites,  spinach and olive oil daily either.) It's not like I was eating fast food every day, but I definitely relaxed on the stuff that tends to aggravate my arthritis. It was a perfect storm: stress, less physical activity, diet changes.  Suddenly you're in a full-blown raging flare that won't calm down.  My orthopedic surgeon (whom I know allll toooo well) read me the riot act after seeing the damage uncontrolled inflammatory disease had done to my shoulder.  My rheumatologist kept badgering me about starting another biologic.  (There are many reasons why I did not want to go back on one.  They increase your risk of cancer by 6 times, they leave you incredibly susceptible to infections that are very dangerous to you then, they make you gain weight.  Um.  I'm a runner and a backpacker.  Strap on a 25lb pack and go running and tell me what you think about that.)  I appreciated their concern but figured I could still control it with diet and exercise until I saw the results side by side of MRIs of my right hip joint from 2003, 2014, and 2017, and my rheumy finally started to get through to me.  My hip went from 0% fusion, to 13% to 84%.  From 2014-2017 it fused 71%.  This October, my dr did more imaging, and sat me down.  It was almost 94%.  My surgeon informed me that I would be in a wheelchair by the time I was 60, and wouldn't be able to even ride a bike by the time I was 55 if I didn't listen.  (As I just turned 49 in November, this caught my attention I must say.)  Someone said to me, "The war is over, you've won that.  Now you must win the Peace- that's the hard part."
     But you don't look sick.  I didn't, really.  Not to people who don't know me.  To people who do, the ones who love me, the weight of chronic pain is apparent.  I'm irritable.  I'm so tired all the time.  I'm a broken record of "I'm tired".  As someone with an intense love for the outdoors, and running, it appears I'm so much healthier and fit than many people, especially my age.  But if you look close, you'll see that it's so much more of a struggle than it used to be.  This isn't ordinary aging; not to mention, that the old axiom "Use it or Lose it" is very true.  This isn't that.  Backpacking and running are the great teachers of Suffering.  It's really about how well you suffer, I often joke.  I'm used to suffering.  In that capacity (backpacking and running, although most of the long-term runners I know are same), I do know that I have a much higher tolerance than many.  But without the relief of days here and there without pain, you start to understand why your rheumatologist was so insistent.  You invest in disciplined diet, consistent exercise, you take the long view.  But my reliable old tools were suddenly not delivering the way they used to.  My doctor implored me to do everything I could to focus on stress relief and getting my foot back down on this disease, to hopefully achieve remission for awhile again. And here, is where the going gets hard.  But you don't look sick.  People have never heard of AS.  They don't understand how someone who's been so apparently healthy for so long suddenly is sick enough to need sick time.  And like, don't even get me started on the running, the skiing, any type of outdoor activity or trip.  Or actually, yes.  Let me get started on this.  That's why we're here, innit?
     As a society, we don't understand chronic disease.  We think every handicap or health issue is/should be visible. * (see note)  And people who change jobs, stop working or do something in that vein as a result of that disease, and then dare to do something physically active--- why, what the hell?  What gives?  I'm mean, you're sick, right?  If you're sick, you're supposed to stay home incapacitated on the couch, calling your maid to bring you soup and soda crackers, you absolutely are not allowed any type of joy in your life until you are better and can return to the drone assembly line.  We all know they're just scamming.  Fakers.  I mean, I'm working, and I can't do that, how can they stay home but still be able to run 5 miles?  I'm healthy and I can't run 5 miles 3x a week! How can she go backpacking and claim to be sick?  Well, Friends, Romans, and Countrymen, here's my answer:  There is a big difference between working an 8 hour day, 5 days a week (we won't go into jobs that require people to be on their feet all day, or jobs that are physically stressful, such as laborers or people in the nursery -horticulture, etc- business, nurses, retail, etc) and going running for 45 minutes a few times a week.  Or skiing once a week.  Or backpacking something not too hard for a few days.  See the difference?  And imagine feeling like you want to die on the couch all day long, 23 days out of 31, knowing you need to physically be active or you'll rust like the Tin Man on a wet Georgia spring day, your disease will continue to destroy you, you MUST GET UP AT THE CRACK OF DAWN TO EXERCISE BECAUSE WE ALL KNOW IT HELPS but you have to work from 8am to 5pm, and you know it will kill you physically? Or conversely, you tell yourself  'ok, I'll do it tonight after I get home' because you slept maaaaybe 2-3 hours last night, but you are completely wiped out after 9 hours at work.   Never mind that at some points, just exercising will exhaust you to the point that's all you can do that day; and you know, that strengthening your muscles will help you avoid an artificial shoulder before you're 50, but fuck, you know it's going to take everything out of you.   This is where as a society, we fail.  Whether it's from suspicion,  our own fatigue, or just the fact that we rarely spend that much time actually considering others as we do ourselves, we don't view unseen illness as 'real'.  Especially when it's a whatthefrickingweirddiseasedidyousayyouhave type of illness.  (*Disclaimer:  I'm really addressing physical illnesses here, the world of mental health and mental disorders/diseases are a whole 'nuther ballpark, albeit mirror imaging, in terms of most judgments.)
     You don't look sick but I know your disease.  The other side of that coin, is, well, thank god if you have a disease people know and understand, even a little bit.  Cancer, MS, Lou Gehrig's, Parkinson's....at least these are names circulated in public discourse, that most people are familiar with.  It's the unfamiliar we always suspect.  I don't include arthritis in that, because arthritis is this umbrella term that really doesn't say shit.  Lots of arthritis is age or use-based.  Some of the symptoms are similar (joint pain, swelling, aching in the joint) but auto-immune based arthritis is where your own body causes the damage, because it attacks itself.  It doesn't recognize its own tissues, cells, as part of the friend zone, it thinks they're intruders. It causes the systemic fatigue and pain.  It's fighting a war every day inside while you're just going about your business trying to pick which lane is going to move faster in the daily commute traffic.  (Fun Fact: the weight gain from inflammation alone, and it's symbiotic relationship to water retention can cause one's body weight to vary as much as 6lbs a day, and it has nothing to do with diet or 'drinking enough water'.  If I had a fucking nickel for every person that told me to 'be sure to drink enough water!' I'd outspend Bloomberg in the quest to defeat Trump.) Anyways.
     As for me, a person that has always lived for outdoor adventure, who's found solace and strength and medicine in running and backpacking,  hearing someone say "Maybe you'll just have to give all that up now.  Maybe you can't do it anymore" is just. so. irritating.  Why?  Why should I accept that I can't continue to be physically active in the ways I want, especially if I have the option (or not option, if you're my rheumatologist) of focusing on *gasp* my health?  Why should I go the American Way of the Couch?  Most people do, they gain weight as they age, they 'can't do that anymore, my knees are bad' --news flash, lifting weights and keeping your muscles strong to keep your joints functioning properly goes a long way, and psssssst I haven't had really any cartilage in my left knee for oh, about 7 years now, and that is the LEAST of my issues-- and you know what?  That's ok.  FOR THEM.  Not for me.  I hardly feel that 49 is the age to be sent out to pasture.  You know, what they do with racehorses, when they retire them from racing.  (I mean, my dad is almost 90 and recently, when I called him 'old' he bristled.  I said "Dad.  I mean, you kinda are.  If you're not, what age do you consider old?"  His steely reply was "I don't know.  I'll let you know when I get there".  Ok then.)   First off, imho, that's the surest way to stop feeling better; fitness is always better than sedentary, it's proven that exercise helps joint disease AND mental health.  When your days are spent under the cloudy grey skies of constant chronic pain and fatigue, even though your backpacking trip (or ski trip) might take every single drop of your energy, and leave you utterly spent, the mental relief, the joy you experience is why you get up the next day and continue on.  It's the bright spot in the clouds-- the sucker-hole, as my partner likes to say.  It makes you believe that one day, the clouds will blow out for awhile. 
     And my life is my life.  I don't tell others they should lose weight, get fit, etc.  I don't and will never understand why people feel the need to tell others how they should live their lives, if it's not hurting them.  Most things we do as individuals don't hurt others (obvs not talking about armed robbery or assault here, or dousing yourself in a gallon of perfume before you go to a packed movie house).  If I want to focus on the viability of my body, and forego the rat race of pursuing the almighty dollar so I can have a big fancy house and lots of toys and such at the expense of that body, so what?  It's just less competition for those who want that.  Is it subconscious anger, not understanding?  What fuels the snarky comments "Oh well.  You're sick, lololol, but you can still ski?" :dramatic eyeroll:  Even from people that are supposed to love you and support you-- my ex-husband, who lived with me for most of my disease, never really believed, even though he went with me to dr's appts, to Seattle for specialists, he saw the tests, saw the effects, saw the meds (um.  They don't just put you on low-dose chemo because you 'say' you don't feel good.)  I think some of that is because I'm stubborn.  I pushed through a lot of pain and stiffness because I wanted to.  I didn't want to admit I was sick.  In the one bit of kindness to myself, I admit: I do the things I want to because I refuse to give in.  I refuse to admit defeat. It's probably a little bit detrimental, at times, but I have learned and I do modify my activities a bit now.  Because I have to.  And frankly, honestly, I have had many days the last 6 months where I DID want to say fuckitall.  Where I did want to just. lie. down. and. stop. trying.  But I rested more than ever the year of 2017, partly because of surgery, partly because I was drowning in the despair of my daughter.  And it didn't help. It made me worse.  I wished for all the things, that year.  Some of them came true, in 2018.   But mostly, the thing that I wished for, I still wish for, would give anything for, are those bodies getting wasted on the couch.  That aren't at war with themselves, that only require getting up and getting used, that don't try to kill you with fatigue and chronic pain every day.  How I would love to live in a body that I can use and enjoy most of the time.  "Excuse me, I'd like to return this body?  It's malfunctioned well before it's life expectancy"  Everyone deals with fatigue and few haven't had something.  But I would give my firstborn (sorry Hal, it's been a good run, proud of ya, you'll be fine) to have even a week --hell, right now, I'd take an entire day-- where I didn't feel like I have influenza and my body's been hit by a mack truck over and over.  I'm fighting the good fight-- going to bed early, exercising, eating very mindfully-- when do I crest the hill?  When does it start to 'kick in'?  When do the meds get control, and how much of my life do I have to sacrifice to them?  (Full disclosure, if you've even read this far, the latest med adventure has had the lovely and delicate side effect of constant diarrhea, combined with a colon that feels like the Royal Fireworks are being played all day long and all you can eat is plain rice.  Sweet!)   It's been months.  Seriously, months of really, truly, trying, including meds.  I've lived with this for 17 years.  I ain't new to the game.  (I've pretty much accepted all there is to be accepted, but dang, Universe.)   If you look at me--or someone like me-- and make an underhanded comment regarding 'how lucky I am' to 'be able to do this stuff', please know that it's my fear of uncomfortable jail beds and lack of windows there that keeps me from violent response (I kid, but come on man, only about the jail part.  It's really usually the fact that there are witnesses.)  I might smile at you, but my kids can tell you I can kill you inside over and over with just one look. 
     Life goes on, for all of us.  I certainly know it could be worse.  I am actually grateful in many ways for the lessons I've learned from this disease.  I've learned about choices, and what I really find important.  I've learned we, and we alone, choose what is important in our lives, when we can't fit everything onto one plate.  We have to decide what we want on that plate, why should/am I putting what you want or think should be on my plate?  Why aren't I putting what I want on my plate?  On my plate, I'll take the outdoors, pleaseandthankyou, because if you're going to be miserable anyway, might as well do it with a beautiful view.

    

If the Sky Could Dream

     ...it would dream of Dragons. 

                                  To the girl who read by flashlight 40 years ago:

Who wouldn't want to stand and fight with, climb upon the back of, and fly with a dragon?   Soar high and free with a dragon?  Everyone knows (because how could you not?) that fire cannot kill a dragon. Dragons are fire.  Its central to their being. It's the fire that lights up the dragon, that makes it special, beyond any reach of a mere human.  It's how you defeat it.  Put it's fire out.  It's how you control it.  Tame it.  Keep its fire low.  But what happens to a dragon if that fire goes out?  Can it survive the coldness that fills it up?  That beckons it to a hollow, icy sleep, that becomes death for a dragon?  People call for it, expecting the mighty dragon to again overcome it's injuries, to answer their demands.....and only silence returns, no matter how earnest their summoning, and so they climb the mountain, struggle through boulders, blizzarding, swirling snow, searching for the dragon's cave, only to find that the dragon lies weak, numb, too listless to even shiver in the deep cold.  They turn away, disgusted and defeated that their dragon is useless.  This dragon is dead.  Come, it's of no value to us anymore.  "So comes snow after fire.  Even dragons have their endings."  (if you know this, paypal has $5 waiting for you.  In monopoly money)  The dragon knows they've lost faith.  It's so weak it struggles to remember why it fought in the first place.  It's so close to giving in to the the deep cold; come rest,  the cold whispers. You don't have to fight anymore.  Come rest in me.  No one cares about you anymore.  They've left you for dead.  They don't appreciate you, the battles you've fought, the scars you carry deep and many. But I do.  I'll take care of you.  The dragon starts to slip away.  It feels so good to just let go, the dragon is so tired.  It's fought battles that were not its own making, it's been so long since it was left alone to rest.  But just as it starts to release itself into the dead hands reaching out from the deep, one last little spark flares in the darkness; the sky sends down it's dream, falling gently into the dragon's heart.  The dragon is briefly reminded of the fire's warmth.  A faint whisper echos somewhere deep in the cave: You are a dragon.  The stalker of dreams, you have talons of power and fire.  You shake the earth and scorch the ground under you.  Cities fall before you. A dragon's heart burns fierce."   The dragon's eyes open, and somehow, by some grace from the dreaming sky, the spark becomes a flame, and the flame grows to a fire.  The dragon unfurls it's wings, gazing in wonder at the beauty it sees, remembering the strength it once had.  It slowly lifts itself to it's feet, stumbling.  The cold starts to shrink back before the immensity of the dragon, and the warmth that is growing, emanating and filling the cave.  It melts and dries out, retreating to the deep blackness, as it has so many millions of times in the face of the dragon, for the cold and ice are always after the dragon.  The dragon tries its wings...once, twice.  It turns its head to the light up above it.  It rises out of the cave, the people slowly climbing down looking up in wonder.  The dragon is briefly afraid, a vague memory of how it's fire has gone out and failed it.  It decides it will live for itself, for the fire only.  No one will tame the dragon again.  No one will tell the dragon, who has faced a thousand foes, fought a thousand battles, borne wounds that would destroy other dragons, it is weak and it's time is over.  The dragon and fire are one, the fire fills it to bursting and it opens its mouth.  Out rushes the flame, with the heat of a thousand suns,  and sets alight everything in its path.  The dragon is filled with power, rising higher and higher in circles towards the glowing sun.  Once again, it breathes, roaring and releasing the beautiful fire.  Faintly it can hear the cheers below; they are nothing to the dragon now.  The dragon flies in the welcoming sky, feeling its power, its worth,  its ownness.  

         To the girl who read by flashlight, saw dragons in the sky, who knew magic was real, this is for you.   It's time to rekindle your dragon. 

 

 

Sunrise

I took this picture January 8th, from my front window.  A glorious sunrise, that makes crawling out of your warm bed worth it.  It's a struggle, if you love your bed as much as I do, and spend as much effort to make it as comfortable and inviting and sleep-inducing as mine.  The Struggle is Real, to quote Instagram.  But like many things in life, forcing yourself to do what you know is good for you, while tough, is ultimately it's own reward. As the year mark of my blog post (that blew the stats out for views and was shared by an NA Facebook page, surprising me and opening my eyes to the sad fact that honest and raw discussion about addiction is still unfortunately rare) regarding my daughter's addiction has come and gone, I've been reflecting on the changes the year has brought.   Usually, my blog posts make themselves.  I don't sit down and find things to write about. They find me.  (Which explains the large gaps between posts, I suppose.)  This felt like it needed attention, though; a second episode.  Many in my life, and the few I keep close, know the second half of the story; but for those who don't, here's where that story stands now.

Happy is an interesting word.  It's lightly meant but heavily used, and encompasses a broad spectrum of meanings.   But when you are, you know.  You know deep in the heart of you. You can't even hide it.  It shines out, like the brightest sunlight that will find any crack in a wall or window or space it can find.  It's intense, and healing, and empowering.  It's also a backdrop, the foundation that should be under all else, because it's about one's self.  Happiness comes from within.  To be truly happy, when life aligns itself with the 'things', events, and trappings that we traditionally associate with happiness --"if I could only get rid of all my debt/lose this weight/have a better job etc"--one really needs to be happy and at peace with yourself.  It doesn't have to be perfection, it doesn't 'end' at a certain point, it's a lifelong job, to accept yourself, and evolve.  But loving yourself, is the foundation of true happiness, true love, and peace, no matter what.

So, long story short, my daughter celebrated her year clean birthday on February 14th.  Valentine's day.  A day dedicated to love.  The day her, and her boyfriend, (who is no less remarkable and amazing) decided they loved themselves.  It became clear, over time, that what they said, they were doing.  That they were, in fact, recovering.  That they were, and will continue, to choose to love themselves, every day.  When you've lived with addiction and it's immensely devastating effects on your life, your world, your soul-- your trust is something that erodes to almost nothing, or pretty much, yeah...nothing.  But that's the thing about trust.  It can, really, be earned back.  When someone is actually walking the talk, it's clear.  It really happens-- the truth shall set you free.  Living your life with honesty, with integrity, will always result in trust, and when combined with recognition of your own worth, and dignity, makes for the elusive enclave of happiness.  My daughter and her boyfriend gave birth to a beautiful, healthy (and the happiest baby I've ever damn seen) daughter on November 24th.  For some, this would be a stress and worry that might break them. For her, it was a like a beacon of light locked on to her heart, a laser beam, and I've never seen anything so wonderful as the love between them.  The whole year, leading up, I watched them get themselves together; move into a decent apartment, make it a happy little home, dedicate consistent time to recovery steps, take care of themselves, heal old wounds and affronts, and every time I was able to physically see her, it was completely clear, she was different.  She was the whole person she deserves to be, that she loved herself, that she was finally, truly, clean of her addiction.  Does this mean she doesn't have to ever worry again?  Absolutely not.  Recovery is a choice every day.  But love grows stronger, every time it is welcomed into the heart.  Loving herself every day, and loving her child every day, she strengthens it power.  It is the giant force of blinding light surrounding her that overwhelms the darkness of addiction, whenever it tries to re-enter her world.

When her dad, brother and I attended her birthday celebration of one year clean, it was such a beautiful gift, to see so many who understood first hand the power of that love and the support they offer.  They were gracious to allow us into their world, a world where trust is something not freely given, and must be earned, rightly so.  I was filled with an enormous sense of gratitude and thankfulness, for these people who support and lift up one another, while fighting their own demons, and trusting three humans they've never met before to listen to their vulnerability, and their heart.  I left with the grateful knowledge that she is not alone; her boyfriend is not alone; that they are loved and supported.  Little by little, love has worked it's magic, and soothed the scars, the pain, the anxiety of watching addiction ravage the piece of your heart you let out into the world when you become a parent.  I am grateful for the luck they have had, in the benefactors who saw the humans behind the addiction, who understood, that RECOVERY IS POSSIBLE, who supported them and knew they, as all addicts are, were worthy of that chance.

The last two years were the hardest years of my life to this date.  Surviving them seemed practically impossible; but through it I've learned to love myself too.  It's taught me so much; softened my edges, broadened my mind, given me depth, and clarity, and growth.  While I wouldn't wish my experiences on anyone else, I'm deeply grateful that I was given them.  Without them, I wouldn't be who I am at this very moment.  The saying goes, 'when you stop living (growing), you start dying'.  Although I admit, I'll take a respite from major life lessons for a little bit --winkwinknudgenudge, Life are you listening?-- I am thankful I've learned the ones I have.  To really love someone else and enjoy the relationships you are offered, begins with loving yourself.  Happiness isn't a thing, or a goal; it's place in your mind, a feeling in your heart.  A feeling that cushions you when the inevitable challenges of living in the world come up.  The experiences of the last couple years have taught me that, and I wouldn't change it for the world.  The sun has come up, that beautiful, glowing light, it's warm on my face; the promise of summer is heavy in that warmth, and I'm going to enjoy every minute of it. 

The Unbearable Lightness of Being (Einmal ist keinmal) or I was Jack, you were Diane

I always kind of hated that song in school.  It came out when I was in 5th or 6th grade, details lost; but it seemed such a squirmingly bad song, that took no songwriting skill and was almost embarrassing to listen to.  All the popular kids sang along at the top of their lungs, adding to my distaste (even then, I rebelled against the tide.)  I hadn't thought about that song for long on at least 20+ years, until this morning, on my run, a remix called "I was Jack, You were Diane" made it's way  onto my Spotify radio.  I was surprised at how those forgotten chords fell right into a groove I didn't even know existed; and the response those grooves bore.

This last few months of my life signified some sobering and defining changes: my last child, my son, graduated from high school.  My 'official' career as a mother raising kids was ended.  I also filed for divorce with my husband two days later.  I have always tried my best to retain my sense of self outside of motherhood; I feel fairly successful at that, but there's a poignant heartbreak in seeing what is really the end of an era come.  No more school lunches or tabs; checking homework, back to school shopping; the ritual of Mon-Friday wake ups; the Christmas and Spring Vacations.  The 'family' as one school unit had officially ended with Hallie's graduation from high school in 2014, but now, I could say my kids were 'grown'.  Free and able to move wherever they fancied, free to decide their own lives (if I can say that with the caveat that even young children have some freedom in this, but parents do have the official capacity to ground kids, to yay or nay some decisions), suffer their own consequences, reap their own rewards.  In short, we were 'done'.  In retrospect, watching my son's DVD we made for his graduation party, I feel like it was just yesterday he started kindergarten.  Everyone says that, but now I know what they mean.  I'm proud of my children, they have empathetic hearts; strong backbones; deep consciences.  But I'm no longer guaranteed to hang out with them on a wintry December night, or a hot July day in Montana.  Never again will I bend over their bed to plant a kiss on their sweet forehead, and tuck their bear more snuggly in their arms. I find myself remembering their bathtimes, the holiday traditions, those everyday moments we often take for granted, like watching them walk down the driveway from the bus stop.  It's also reminded me of my own high school graduation, and the plans and visions I had for my own life.  When most people are just accepting the end of their children's 'at home years', I'm trying to accept the end of my life as I knew it, of my home, and my marriage.  The life I'd built up to that point.

It's funny, how we really are the same people we were even then.  Oh I don't dress anything like I used to, I don't have my nose pierced anymore, my diet is completely different, my political views have broadened and become much more complex.  But I still love 19th century British ghost story anthologies, at any time of year but particularly in the heat of summer; I still listen to the same kinds of music; still love to watch Alfred Hitchcock on a sultry summer night with a good thunderstorm, I'm still running.  But my life looks very different from what I had envisioned as an exuberant 19 year old.  It looks very different from even two years ago.  Sometimes, wrapped up in the cocoon of a tight family life, we lose sight of the fact that one unrelenting constant about life is the reality of change.  Life is, in essence, about nothing else.  28 years ago, I thought I would change the world in some way, that life would reveal it's meaning once I had accomplished something.  But I found myself on different paths than I'd anticipated.  I thought I was navigating those well.  Then suddenly, you break out of the forest into a place you hadn't seen coming.  The German phrase, Einmal ist Keinmal  boiled down means "Once is never".  What happens but once might as well as never have happened at all.  When I was in high school, I read the novel The Unbearable Lightness of Being.  I struggled with the concept of being so pessimistic as to not being able to see the meaning in life, in anyone's footsteps and the mark they leave.  But after the events of the last couple years, particularly of late, I struggle to NOT understand what Tomas felt.  Emotional trauma can have varying levels, just as physical trauma.  There are some injuries that require much more time, and work, and recovery to heal.  It's easy to rationally look outwardly and feel that the surface is healed, but it's under the skin; it's the muscles; the tendons; the joints, that are still not.

When my daughter left rehab towards the end of February after only 10 days, I went on a solo backpacking trip to the Rincon Mountains outside of Tuscon AZ.  My normally reticent and worried mother unexpectedly gave me the strength and boost I needed to put myself first, realize there was nothing here I could do, and go.  It was only a couple days, but physically, I was still on restriction after my shoulder surgery on October 6th.  I hadn't been officially cleared for any activity, but I couldn't stand it any longer.  That had been my longest stretch of physical inactivity for...well, I don't even know.  I couldn't run, I couldn't lift, I couldn't hike.  I could barely walk the neighborhood.  The elevation was high, the trail steep and long and my shoulder was untested.  But it worked.  It started the healing, both physically and mentally.  My daughter stayed sober, slowly I began to feel a bit like myself.  She delivered the news in May that she was pregnant, and I was conflicted.  To have a child is committing your life to another, as long as you both shall live.  The saying "You're only as happy as your unhappiest child" is the truest truth ever spoken.  For me, at least.   I felt a bit of PTSD, as I thought about how my life suddenly changed direction when I found out I was pregnant 23 years ago, at exactly the same time she did (although I was a couple years older).  I thought of the sacrifices I had made that now seemed to be a gamble lost; and how I wanted so much more for her.  How I wanted her to be able to fully realize herself, to become centered in who she was and what she wanted, to be on that road; but it's not up to us when our children decide to become, or not become, parents.  It's not up to us what they become, or don't become, period.  And somewhere inside me, a little pilot light of hope ignited.  She is deeply committed to children, has her early childhood certification, and maybe, this would help guide her out of the darkness of addiction.   Of course, addiction is a disease for good reason: it can flare at any time, and the risks now were tenfold.  Without going into too much, I was suddenly faced with the emotions of feeling trapped, of worrying even more now, of immense responsibility in case she stumbled.  But I realized, that risk is there anyway.  As time has passed, she has done well, stayed clean, in treatment, found employment, is focusing on her recovery and her pregnancy.

So I should be healing right? I 'should' be moving forward.  My filing isn't exactly unexpected; my husband and I have been separated for a year, we went together to the court house, no lawyers, just us, clutching each other and holding hands, while we shed tears on the paperwork.  It certainly could be worse.  People begin to expect some happiness again, you're fine, it's been some time now, you're 'over the worst'.  Instead, I find myself realizing that this just isn't a hole I have to climb up and out of to continue on the meadowy grassy path in sunshine.  This is a rugged terrain, part of a valley much, much bigger than I'd dared to imagine.  Realizing that as I struggle up this rocky, loose path, crumbling underneath me and I sometimes slide backwards on, and crest a ridge, there is still a long climb ahead.  To find the meaning again, to remake my dreams and my life, to accept what I want to accept about myself and find compassion in that.  I find myself experiencing a deep sense of failure at what I thought my life would look like.  Of comparing my life to others.  A side of myself I really dislike, but that I own, because it's true.  Trying to rationally remember that my life is worthy, regardless of whether it looks like someone else's.  Precisely because it doesn't look like someone else's, it's my own.  And I've done the best I could at the time.  Of course hindsight shows my mistakes, but what is a life without mistakes?  One without risk, certainly, and even then, highly unlikely.  I know this in my head, but the heart is taking longer.  Our own lives do have meaning, they intersect with so many others, but yet they are solitary endeavors, that we must each tackle at our own pace and intensity.  Some wounds are deeper than others, some paths are hard while others are easier, but in the end what is easy to one may be hard to someone else.  And no one will see it exactly as you, because they are not on the same trail as you.  I'm finding small periods of joy, in the moments the sun comes out.  If I need to stop and take a longer 'rest break', I'm letting myself.  I'm practicing and getting better at just, being.  Just realizing we have only today.  Today is enough for me most of the time, frankly, it's all I can handle most days.  I am not focused on the future, I'm focused on today.  That agonizing, intangible, unbearable lightness of being. 

The Darkest Year is Just Before Dawn

I stared at the dead squirrel for some time before I recognized it for what it was. Cold, frozen, grey; in the stance of death that renders figures unkindly. I kept flashing to my daughter, her hands flexed like the squirrel's paws, the same grey color, the same mouth-slightly-open because death doesn't allow for working muscles. Immediately, the stronger part of me would push it out with great force, refusing to look. Because looking means it will happen. It means I'll see her the same way I was seeing the squirrel. I forced myself to turn away and staggered stiffly back into a run. Heroin leaves its victims with a deathly grey pallor only an addict possesses; it's recognizable, in fact, undeniable. Once you become unfortunately familiar with it, it's like being handed a pair of eyeglasses that suddenly show you things that you never saw before, that most people never see. And once you see it, it can't be unseen.  

Two years ago this month, my daughter became a heroin addict. It was then that the darkest period of my life began. To look at her childhood, her pictures, she was a happy, outgoing, beloved, popular child; a child that had a safe and stable home, with two parents, who had videos and books and games and got to eat McNuggets and mac-n-cheese whenever she wanted. Who never had to worry about where her next meal was coming from, and who had warm, clean clothes.  A child with grandparents and aunts and uncles who doted on her. Who took ballet at age 5, played soccer, played violin, took horseback riding lessons, loved art. Who could read before the age of 5, taught herself to tie her shoes, to ride a bike. Who went camping, went on vacations with her family, had Christmas traditions and woke up to a bulging stocking.  With a plethora of pets to snuggle with and many friends, she seemingly possessed every advantage. The four of us ate dinner together every night, even when her firefighter father wasn't home. She loved her little sister and brother fiercely, taking great care to protect and nurture them. Because she and her siblings were so close in age, there was one joyful, raucous bath time. And every night, save for the very rare one, bedtime followed a comforting, predictable routine. Bath or wash up, snacks and a family book read aloud, then teeth brushing and tucking in. We read fantastic books, including Where the Red Fern Grows; The Secret Garden, The Little Princess, Harry Potter; Hank the Cow Dog; often I would read them in English (or Texas) accents, much to their howling delight, her especially. Her siblings and her were close; they hugged, they laughed, they loved. These pictures say it all.

She grew through the typical awkward adolescent braces-and-glasses stage into a stunningly beautiful young woman. The kind of beauty I'd always wished I'd had as a child. She was incredibly bright; and with a gifted IQ, we didn't worry too much, even though her teachers were always frustrated that she wasn't living up to her potential for grades, in their opinion.  Intelligent kids are often bored with school, we figured she'd find her way.  They always remarked upon her empathy for others, her kindness, her emotional intelligence. Our house was always full of teens on the weekends, who would stay the night. The Costco bill was enormous, but the sound of laughter from the basement made it seem like a small price to pay. She had a propensity for drama, though; hating to see others being hurt or taken advantage of, she always inserted herself into things to try to help. In an effort to help her navigate the angst of teenhood that she seemed to feel so deeply, we took her to counseling twice. Once at the age of 14, and again at the age of 17, after she came to us and told us she'd been experimenting with hydrocodones. Both counselors told us she was remarkedly empathetic, mature, and that she would be fine. The second one told us, "She will go on to do great things. Don't worry about her." She told me many things about her life, things I would never have dared tell my mother at her age, and I felt grateful for the honest relationship I had with her. Upon her graduation, she was so happy, so bright, it was hard to look at her longer than a few seconds, she shone so intensely. But somewhere along the way, things had happened. Little pieces, little traumas, that I, we, didn’t know about. It's funny, how you can get to be 47 years old, and think you know something about something, until you suddenly are faced with the fact that you know nothing at all. Such is my newfound and uninvited guest: addiction. 

It's some of the worst news a parent can hear, especially from the mouth of their child. Heroin. You envision a world of hell, and you're not wrong. Everything horrible runs through your mind, and you're right. Except you don't know it yet. You think it's controllable still. Especially if it's early. You've seen the signs: the gradual loss of personal care, the sleeping late and being awake all night, the drifting away and fighting with close friends until they seem to have no one at all. I watched my daughter struggle with trying to reach out, to want desperately to save her friendships, but her friends, not understanding, withdrew one by one, leaving her in even more desperate loneliness, with only one sure friend: one reliable, steady companion who goes by Brown, and who whispered perfect lies of  comfort and promises. The more friends she lost, the more she turned to the numbness of nodding off, deep in Heroin's hellish arms. The more she used, the farther away her friends ran. And who can blame them? We don't tell our kids the real truth about addiction. We don't teach them the role genetics play, that trauma plays. Few among us have not had childhood or adolescent traumas, hurts, shocks, angst. But for some of the unlucky few, those fall into place all at the right- or wrong- time. She had fallen in with some that played the Roulette wheel and won; but for her, it was a losing game. 

She came to us, after we thought she'd stopped using, in the fall of 2016. She hadn't stopped, she wanted to; she needed help. Would we help her? Of course. If I could have traded places with her, I would have. We were encouraged, that the first step was taken. She asked for help. It was a good sign. How we didn't know, how much we didn't know. It's almost like a play: you can practically predict the path of drug addiction. We were naive, although we didn't think so. She started an outpatient, and for a while, things were looking up. There wasn't major change, but she wasn't using, so we felt it would just be slower than we anticipated. A few months in, and we suddenly found out she was on probation at her treatment center. Her dad and I were separating, and after discussing it with her counselor, we were advised to be honest with her. The response was not what we'd hoped; her counselor had said she didn't have far to fall, but we were wrong. Oh, how we were wrong.

The thing about addiction is, the road is not linear. You hear it, you nod and say "Yes, yes, we know", but you really don't-- until you've been on that road a long time. You watch them get better, you have hope......then it's all burned to the ground. So many times, until you're left wondering, what can possibly be left to catch fire? Your life becomes a Warzone. You stand in the middle of the smoking ruins, and wonder, how did I get here? You learn that the lack of personal care is a visible testament to their lack of self-worth, that they carry such a burden of shame, they don't even feel worthy of humanity. They try to hide behind their skins; you feel such guilt for persisting to criticize their appearance you can hardly stand yourself. You listen to brilliant addiction psychiatrists with 22+ years of experience explain how their genetics set them up to fail where so many don't, and you see that your own history had a lot of luck in it. You want to hold them; to let your tears, your sobbing, intense rush of regret and shame absorb all of theirs, to wash them clean of their pain. You lie awake at night, thinking of every mistake you made, and while you rationally know all parents make mistakes, and you're not directly responsible, you know that there are what-ifs. She'd been in dance as a child, and she loved it; but it was so horribly expensive, we decided that she'd be ok without it. Often, I wonder: if only. If only we'd kept her in dance. You learn what enabling means and does not mean, mostly through hard won personal experience. You start out initially not wanting to let anyone know, because DRUG ADDICT is a terrible phrase, NOT MY KID. Shhhh, it's private, you don't want the neighbors to know. Mostly, to protect them, from what you hope is 'youthful indiscretion.' But you learn, that it is everyone, everywhere; that addicts are worthy of love, of recovery, that they are still the people you know and love inside, somewhere.  And yet, you sit amongst your friends and feel like an outsider. Your friends innocently make disparaging remarks like "probably a drug addict" when they see people on the streets, in their workplace, on the corner. They suddenly remember you in their midst, and shift uncomfortably in their seats, quickly changing the conversation. You sit in groups in treatment, you listen to their stories- the other addicts, their families, their spouses. Initially you think "This is not us.  We didn't have that.  She simply got caught up in the wrong crowd, we're different." But the more you hear, the more you nod, you feel it; you realize you are they, and they are you.

Addiction is recognized by the American Society of Addiction Medicine, the American Medical Association, and the National Center on Addiction as fitting the Disease Model Criteria. It is a “real” disease just like Diabetes, Cancer, High Blood Pressure, and others.  In fact, the recovery rates are actually better than many of those. It is caused by a complex combination of behavioral, environmental, and biological factors. Some will argue that people don't "choose to get cancer or diabetes or high blood pressure!" But many cancers are caused by behavioral and environmental factors, along with biological predisposition. Same with diabetes and HBP. We don't walk up to people with type II Diabetes and proclaim "Listen up Fatty! Lose some weight and your diabetes will get better!" Or people with skin cancer "You shouldn't have tanned and laid out in the sun all that time!"  "You know smoking is bad for you!  It's your own damned fault you have lung cancer and are going to die a horribly painful death!" We don't shun people with lung cancer; we gather around them, we support them. At one educational class, the psychiatrist, a brilliant, compassionate individual, remarked upon how everyone gathers around people with other diseases; we hold drives, we make food, we support.  But addicts are shunned; vulnerable people, often with untreated mental health issues and/or horrendous trauma in their past, who need us the most, are run away from as if they are catching. People often say "But you CHOSE to use in the first place!" Well... very few of us can actually say we have never done something that could be viewed as risky. Raise your hand if you've never had a glass of wine, a beer, tried weed, used a narcotic- even if it's for prescribed purposes. The point of the disease model in relation to addiction is, you put the behavioral and environmental (trauma) pieces into the wheel, then add the genetics: suddenly, it's rolling. And it's a big, stone wheel gaining massive momentum with every revolution. Yes, it's true-for some, it only takes once. When asked what it was like to use Heroin the first time, one addict replied, "It was like a hug from God." People would be wise to remember "There but for Grace, go I." 

There are so many misconceptions, so many stereotypes, so much judgment. So little compassion. People stare disgustedly at addicts, at their unkempt appearance, assuming they just don't care. No one thinks about what the addict sees in the mirror- that they often avoid any and all of them because it's too painful to see what they have become. They don’t believe they deserve to treat themselves kindly. Taking care of oneself, brushing your teeth, means you have self-worth, and self-respect. That you deserve to be taken care of, even by yourself. Most addicts have long since felt anything remotely resembling love of self. Maybe they are living in their car by now, or on the street, and they don't have access to bathing facilities. I've watched adults scorn and berate young women simply coming in to use the bathroom at a Safeway. Are we that callous and unfeeling? "Just stop using!" "Get help!" "It's your choice!" Oh, but if it were that easy. I ask all of you who have ever tried to lose weight. How would you feel if you failed even once on your diet, if people stood, fingers pointing at you, glaring accusingly "YOU FAILED. YOU'RE NOT WORTHY". And food, for people without that genetic predisposition, is nowhere near as addicting as Heroin. Failing on a diet even once, sneaking that piece of chocolate because damn it, you've had a hard day. It's just a little, I’ll start over tomorrow. The two are not dissimilar, but one is so much more exponentially powerful. And yet we pretend it's simply a matter of willpower to overcome this devil that destroys and controls, when we can't even say no to a plate of pasta. When an addict looks at the ruins of their life, the rubble, the chaos around them, the mountains they must overcome with little to no help from society-it can be immensely overwhelming to try.  The road is so long, so steep...just a little.  One more time.  I'll start tomorrow. 

So, you unwillingly start to learn the Fine Art of Addiction Hell. You don't hide it anymore, you freely tell people when they ask- not much -but some details. Soon you realize, people think the mere mention will somehow taint them. They become tired and weary that your loved one is still battling this. I mean, come on, it's been a year now, how long do you really think I can be sympathetic? I have things to do! I have worries of my own! My child is trying to deal with being dumped by their prom date! THESE ARE BIG WORRIES DONTYOUKNOW.  The official term is "compassion fatigue". You understand, god knows, you understand; you wish you could shut the door on it yourself.  You still feel like an outsider. People have their own stresses; they feel tired and exhausted with their own problems. You remember what it felt like to have what you thought at the time were major issues. Oh god could you only go back to those lovely, silly workplace stresses. Worrying about how to pay for college for your child, instead of rehab. (Did you know that most rehabs average $55,000 for just 20 days? If you're lucky to have insurance, you might only have to put out $5,000 or so, not counting the 20% part and the medical deductibles for prescription meds, the travel to and from, the lost work time to attend groups and education.) There are those who truly mean what they say when they offer you their sympathies, but only one other person really understands the grief-the other parent. Her dad is a firefighter. The epidemic that is Heroin forces him to confront the reality of her life frequently; administering Narcan to those fortunate few, watching the shocked, grief-stricken family and friends of those who are not. He is exposed to it in ways you are not, and you don't know how to help. The two of you are lucky, though; it has not torn you apart the way it can others, but helped you find an unfortunate piece of ground free from other arguments. You learn how to endure together, you look at your own relationships suddenly through different lenses, in a good way. Still, when others urge you to come to life again, please, let's have lunch, you feel moments of that old warmth, the old you, but they're as fleeting as a shadow. The dark devil on your back grips you tightly and whispers in your ear to remind you he's still there. Happiness becomes like an old lightbulb that was once bright, and now glows weak and dim. But although that light grows dim, it's not extinguished.  You tell yourself to have hope, there’s always hope. You look back at the family pictures, you watch the videos, you wonder just how this beautiful piece of your soul, your heart that has grown legs and is walking around outside of your body can deteriorate into something you barely recognize.  It's like Heroin is a massive tsunami and your daughter was playing too close to the shore, she's swept away and you can see her, please, please help me you can see her struggling, swimming, trying to stay afloat godhelpyouwhycan'tyousaveher.  

 The “well-meaning” begins. People outside this inner circle that think they can 'be the one'. The HERO! They advise you, with heartfelt concern, brows furrowed, that you should do 'this'.  'That'. "You should really stop/start/try/don't/do/" everything, and nothing. You stop sighing, and just stop responding. They say all the things you've already said; they try all the things you've already tried; they unwittingly enable, undo, all the things you wish they wouldn't, but you wonder, unfairly, unfruitful as it is, maybe it will work; you can't bring yourself to ruin the possibility it might make a difference. You watch your little girl, the baby you cared for, the child you rocked all night, for whom you sacrificed sleep, yourself, who you gave everything to- slowly become a shadow of herself. Her birthday comes and goes.... your heart, what's left of it, shreds even more. You watch her sister and brother worry and wonder in disbelief at the path their sister is choosing, knowing you can't take away their hurt and feeling it all the more because you can't save them from it; you watch your parents suffer, your sister suffer, your entire family, all suffering- and you still feel like you bear some responsibility for saving all of them. You have family dinners, minus one, but it's almost like death has already come to claim her, for she is not present anymore. You look around and wonder, is this what it will be like? Will our family pictures now be only four? You watch other families, that you've known, and your children have grown up with, transition into happy families that start adulting together. You wonder what happened to yours; then you remember your daughter is a casualty in that tsunami. You see pictures of families vacationing together, and you remember your beautiful past ones and wonder if they will ever return. You encourage your other children to have hope, to have compassion, to remember this is their sister. You try to teach the concept of loving without enabling, that supporting and loving someone emotionally is different than acting as if the relationship is normal. To let go of their expectations, to simply love. You still have to parent. Even in the midst of this, you must encourage them to continue to grow themselves, to focus on their goals and dreams. You wish you could do the same yourself. All the while, you slowly blacken and wither away on the inside, as the trauma becomes yours to carry and bear, too. You feel cuts deep, and many, so many, that you bleed so much you become limp from loss. You keep your phone on you, close; you answer every unknown call because you don't know if that's the phone call telling you they found your daughter. You think things no parent should ever have to think. You accept inquiries about your well-being in the spirit they are intended, but you become numb, and start answering with "oh, well, you know. They are what they are" because you have no other answer to say.  You feel as if you are wearing Ebenezer Scrooge's chain around your neck and dragging, with no end in sight. It is heavy, so heavy, if only you could put it down. 

In the beginning, you suck up the moments of joy, because you still believe. You need these moments, they sustain you. But slowly, ever so slowly, weeks run into months, and months run into a year, and year becomes years. And you die a little more every day. You find less and less happiness makes its way into your being, because your being has become a shell; a cold, hard husk, bereft of anything living left inside of it. You know you must make your own way, there is nothing you can do. You realize you're becoming used to the weight. You know, even if a miracle happens, you now carry deep and intense scars. As a parent, a mother- you are forever attached to the soul you brought into this world, that you were tasked with bearing to adulthood safely, and your happiness and well-being is directly tied to them inexorably and forever. The light has grown dim, but it is not out. Not entirely. It lies cold, like the January sun; pale, weak, but not out. You cling to this small hope, that spring will come, that dawn will break. 

*I have wanted to write about this for so long.  It's hard to adequately express the emotions of having an addict for a child.  There are so many resources, please take the time to educate yourself and seek support through Al-Anon or Nar-Anon if you struggle with a loved one's disease.  Reach out to me if nothing else.  

Resource links: https://www.centeronaddiction.org/what-addiction/addiction-disease
 https://www.asam.org/
 http://www.nar-anon.org/