Stress, Values, and Saving the World

There isn't much harder stuff in life than dealing with a child's illness, whether it's a chronic and unrelenting uphill battle or an impending death.  We all have these battle scars, we're all a little PTSD - post-traumatic stress disordered - and it's so very hard sometimes to match strides with the rest of the world.  Because it becomes your world. 


I went to some silly stress reduction class a couple of weeks back and there was the usual discussion of the most stressful life events.  Several common stressful life events were assigned number values. 


(Apparently none of us was polled.)


According to the stress experts, the most stressful event one can endure is the death of a spouse.  Okay, I can go with that one.  From there, though, it sort of fell apart for me.  Just by way of example, divorce scored a 73, while the death of a close family member besides the spouse scored a  63.  Not sure whether that's supposed to include the death of one's child, but nothing else on the list fit.  The other item that might apply to having a sick child - "change in health of family member (not self)" - scored 44, while pregnancy scored a 40 and "sex problems" 39. 


Hmmm.  No wonder we feel so isolated. 



I remember a time when I would have read the list and proudly checked off my list of stressors as proof of my productivity and tolerance.  Now that my "busyness" actually keeps someone alive and functioning, I no longer feel the need to check it off a list.  But the stress is so far off the charts, isn't it?  What list do we use?  Clearly the one I've referenced isn't geared toward our unique lives.


I think about my Grandma Mabel, whose two-year old son - my mom's twin, Dennis - died after being literally run over by a car.  Sure, she had other kids - there were eleven who survived to adulthood - but she never got over losing Dennis.  Not that she was sad or mopey, but in her last days, I am told, through a morphine fog as pancreatic cancer extinguished her strength and will to live, her few words were of Dennis. 

Fifty years gone, that child still haunted her thoughts.


I was in Meijer yesterday to grab some groceries and noticed an older woman, maybe fifty something, with a younger man, possibly a younger man with Downs syndrome, possibly her son.  I don't know, I just picked up that vibe.  I don't think they were on a date.  Anyway, it set my mind meandering along imaginary pathways, what I imagined to be her life.  For thirty-some years, she's brought that boy - now man - with her everywhere.  She gave up her own "life" when she brought his into the world, and I'm sure she didn't know what she was in for.  Not that she would have turned the task away.  She's trying at some point to figure out how to provide for him after her death.  I assume that she's facing retirement if she hasn't crossed that bridge already.  While the rest of her peers launched their kids, cried over empty nests, her little hatchling never left.  Never will. 


Now, I didn't see an unhappy mom, let me just say that.  She seemed content and well-adjusted to her role.  I think many of us would feel envious of the obviously close relationship this mother-and-son pair possessed.  But still - that's got to be some serious stress.


What does a busy mom of a sick child do to keep her stress at bay? 


What do you do when time and resources and plain old circumstances just don't allow for a healthier coping mechanism than . . . a little something from the liquor cabinet?  My personal addiction was anger and candy.  Not very sexy, I know.  But for all the support groups and offers of help (both genuine and token,) there's just no one there when you just want to take a shower right now and you just need five minutes right now and you're going to lose it right now.


So the stress ranking system . . . It offended me, frankly.

A tool for a society that considers "busyness" for the sake of "busyness" a worthy value.


I count myself among the lucky ones.  My daughter, at diagnosis, had a deadly cancer and was paralyzed from the waist down.  Aside from some inexplicable relief from finally having an explanation for all of those random symptoms, it was easily the most stressful couple of days I've ever experienced.  And I've had some pretty stressful days.  (At least according to the stress chart, anyway.) 


In many ways, I feel that I didn't fully grasp my mother-ness until I faced the beast that tried to take my child.  It brought out shades of me that I'd never seen before.  I became fierce, I became unsettling, I became intimidating.  I became wilder.  I sort of grew into my skin.  Even though sometimes I thought I was coming out of my skin.  What a transformation.  Whoever said struggle builds character only knew the half of it.


Because I'm one of the lucky ones, one of the cancer parents whose child survived, I am blessed not only to have my child but also to know what I am truly capable of.  Like a soldier returning from the battlefield, I have stories to tell and stories that can never truly be shared, though they have become threads in the fabric of me.  I am different.  Stronger.  Stranger, even.  My eyes see differently now, for who could see what I've seen and view the world the way I once thought it was?  What I see now is real; what I saw then was wishful.  Or maybe just naive.  Struggle and pain, loss and sorrow - those things are real.


But so is joy.  Contrasted against the dark and stormy, how bright and beautiful it appears now.  Life is a gift.  Truly.  My children smile at me, adore me, love me - in spite of how weird I am, although I do embarass them from time to time.  Where I once desired the trappings of success - family vacations, kids on the soccer team, to earn a fabulous salary - now I aspire to become a mommy who smiles and gives of herself.  Every day I strive for that.  What could be more important?  My kids will remember a mom who smiled a lot.  I can give them that, even on my limited income.


If not for cancer, I'd be stuffing my pockets with money and forgetting, in all of my busyness, to smile at my kids.


I'll never, ever see cancer as a gift.  That's a load if ever there was one.  Cancer is a scourge, an ugly and hateful curse, and I will never be grateful.  Too many I have known who emerged from its shadow with one less among them.  Too many I have known who will silently tally the milestones that will never be, the birthdays not celebrated, the graduations and the marriages and the grandchildren that should have been but will not be.


But having been in that shadow . . . how bright is the day.


But for the grace of God?


No.  God didn't do this.  God didn't "choose" me to be a cancer parent and he didn't "choose" Rori to have cancer.  I struggled with this one, boy did I struggle with this one.  I was pissed off at God.  But I gradually came to understand that while God was sad along with me, he wouldn't - couldn't, that's not what we agreed to - step in and rescue my child.  He'd help out in some other ways.  We chose free will back in the garden, and it's a package deal, isn't it?  Sin did this - greed and waste did this.  Not God.


But God's grace was with me when every day, close to a complete breakdown, somehow there was just a little something to grasp, something to reach for.  Sometimes there were no open doors, but there was someone or something that led me around the backway.  "You can't always get what you want . . . you get what you need."  I never got Rori to those alternative healers that I wanted, but at the end of the day, she is a walking miracle, in spite of all the things I couldn't do for her.


Literally, a walking miracle.


After her surgery, the surgery to "biopsy" her tumor from inside the spinal cavity, Rori's bottom half lay immobile, just as it had been in the weeks before her diagnosis.  Only myself and one PA - Aaron - saw the toes twinkling, almost imperceptibly.  It was enough to hang my hopes on.  (And Aaron's as well, if he might be so daring as to have any at all in such a place.)  With a little help from Superman, I learned enough about how the spinal cord heals to recognize that Rori's future was not yet determined.  Unwritten.  I kept her moving.  Kept those muscles built up for the day she decided she wanted to walk.  She was an unknown quantity.  And she didn't know that she wasn't supposed to figure out the walking thing.


Rori was almost two years old when she took her first steps.  A spring day, an open door, and a determined child . . . time stood still.  I forgot to breathe.  Three steps, a stumble; four more.  And she was out the door, standing there in the spring sunshine.  At the moment that I anticlimactically thought to myself "well, I'll be damned," I realized that I'd had my doubts all along and I really had been in some serious denial and THANK GOD for that, because my little girl was walking.


That part was God.


Today, Rori is brand-new at being three; she refers to Sleeping Beauty as "Princess Me"  and fancies herself a ballerina of sorts.  While her right leg is only partially functional, my irrepressible little girl never says never.  She knows it doesn't work right - she says so all the time - but a child doesn't let that kind of stuff get in the way of a good twirl, does she?  Other than a pronounced limp, a couple of scars, some dental work, and an uncommon understanding of the parts and pieces in her sister's doctor kit, there's not much sign of cancer around here.


Except in me.  Sigh.  But it's not all bad.


One thing that cancer did for me - that my daughter's fight for her life did for me - was to bring me back to who I was supposed to become, not only a fierce mom but also a political advocate.  All those years ago when I struggled through waiting tables to get that degree in political science, all those years ago when I slept at a rest area to save money and time for the study of law - I've sort of come full circle.  Somehow my passion became just an ambition.  Now, after all that's happened, it's more than that. 

It's my cause.


Research and awareness, those are important things.  For 46 kids who will be diagnosed with cancer tomorrow, we have to keep reaching for the day when there is a cure for every one of them. 

 But my cause is a little different from . . . just that.  I want to embrace all children with disease, not because I'm trying to be inclusive but because I believe that the greed and waste that brought us the plague of cancer also brought us many other plagues.  From one source comes so much suffering.  While you and I can make little changes, who will tell everyone else out there, everyone out there who thinks these diseases are hereditary or self-inflicted and they are therefore safe?  Who will tell them that they're in the lottery? 


We can save kids from ever getting disease in the first place.  The blinders are slowly being removed; people are beginning to understand the consequences of "better living through chemistry."  Better how, exactly?  I want to speed the process.  I want to shift the policies that have drifted into place over years of complacency, policies that have had unintended consequences. 


Cures are implicit in understanding causes.  Prevention will obviate the need for cures.  We cannot afford not to make this happen.


It wouldn't even take a miracle, just good old-fashioned hard work, a healthy dose of hope, and intention.


And a reevaluation of our political alignments.


I am aware that a good number of my childhood cancer friends are staunch Republicans.  As you may have guessed, I'm a bit dyed-in-the-wool Democrat.  Party identity is a part of your human identity and there's no need to reconsider it; something about that party's platform appeals to you, or maybe you're that party in the same way that you're country or shy or good with your hands.  It's very silly, actually; party identity is shorthand for "I don't know who to vote for, and I don't have time to figure it out, so I'm just going with the guy from my party."  We do the same thing with our associations - if the Sierra Club is for it, then so am I;  if the Farm Bureau supports it, then so do I.  Well . . . again, that's us, being lazy.  These institutions - parties and special interest groups - are supposed to be vehicles for our desires, and instead they've become someone else's vehicle (and we're paying for the gas.)  I am a bit of an environmentalist, but I opposed the Sierra Club's position on three of the four Clean Air Act amendments - remember, I was anti-McConnell - because the Sierra Club is single-interest.  We are not.  We have multiple interests, and having a job is sort of central for most of us.  Since we need health insurance for our sick kids and all . . . Your vote is the single-most important factor in the mix, and it's by your contacts with these elected representatives that you inform them for whom and for what you'll cast that vote.  While the groups boast numbers, there is a lot to be said for a personal phone call or an email or - better than any of the others - a handwritten letter to your representative.

This is the link to a very brief, very well-written piece on the Safe Chemicals Act of 2011, S. 847.  It's still in committee, and you can bet your butt that Capitol Hill is bursting at the seams with industry lobbyists.  Did you know that GE has abandoned sites all over the United States, sites contaminated with banned cancer-causing PCBs, and it paid $0 in taxes last year?  At the same time, GE has spent more money than God fighting the Superfund cleanups of its sites.  So much for all those good things GE brings . . . I had this conversation with another parent on a field trip to the state capitol last week.  She was appropriately surprised to learn that asbestos is not a banned substance.  There are thousands of people who received compensation for asbestos-related injuries, after years and years of very expensive litigation - and no one buys asbestos products, because we are so convinced of its toxicity, but the EPA couldn't get a ban imposed. That's how powerful our regulatory agencies are, for those of you worried about "big government."  It's a myth concocted by industry to protect the status quo, which has garnered them huge stocks of money.  At the expense of our kids. 

Here's the link.  We can't all show up on Capitol Hill, but we can surely send an email: 
http://notaguineapig.org/fixing-the-law/


Look, I don't want to rag on the "Reach the Day" ralliers or negate the efforts of those who are pushing to prioritize research funding.  It's not news to any cancer parent that the numbers aren't high enough to draw big interest in creating a pharmaceutical cure.  But there are plenty of researchers - both altruistic and egotistical, we don't care as long as they're determined - who would be happy to do the work, they just lack funds.  This is important work, for all childhood diseases.  But let's not ignore the seemingly small things, like creating a healthy home where disease is unwelcome, an environment less degraded by limitless pollution;  these issues are already in the mix.  We don't have to get this stuff on the agenda - it's already on the agenda.  We just have to show up, in whatever way we can, and speak our minds.  These things matter.  And we can make a difference in the outcome.

Remember:  lobbyists (assuming they are American citizens and otherwise qualified) each get a vote.  Corporations get none.  Their power, influence, and money only buys when we're not paying attention.  Because every elected official needs, first and foremost, to get re-elected.  For that, they need us, and for that reason, they will listen to us - if they know that we're serious and that a vote is at stake.

No one was ever more determined than we were.  Let's save the world, people!  As is so with all true hero stories, if we do it right, no one will ever even know that we saved them.