Tuesday, January 17, 2017

I don't understand.

I can see that my daughter is bowed by a weight that she can barely hold.  But I can't see or comprehend or help her to carry it.
I can see the struggle as she stands at the threshold, looking through an open door at welcoming hands and faces, and can't move her feet inside.
I can't see or feel or touch the obstacles that she faces.
But I know they're there.  Just like I know there's oxygen in her air, that she needs food and water and when she should probably bring a coat, if not wear one; I know that she struggles with something bigger than anything I've had to hold.

And while I can acknowledge her challenge, I can't help.  I can't take the weight from her shoulders or bear the burden for her.  I'd give her my last crust of bread, throw myself under a train to save her life, and hand over the shoes off my feet without a second thought if it would help.  But when it comes to Anxiety, all I can do is watch, and wait, and smile and pretend I don't see the struggle.  Because the more I try to help, the heavier her burden becomes.

And in taking the less known route, the one where I acknowledge that the unseen is real and let her bear her burden however it is that the burden is least combersome to her, I take a new weight onto my shoulders.  Guilt, that I can't just make it go away.  Judgement, because it's a mom's responsibility to fix whatever is wrong.  Isolation, because though I've decided to talk about what I see, it still isn't something that polite society discusses.  And frustration, because the only thing anyone can say is that she needs help.  So I ask and beg and plead, and all I am told is that not everyone is ready to be a parent.  That this is something I need to help her with.  That it isn't okay for her to struggle.  And I pay for these tears, this non-advice, I smile and thank the doctors for what isn't useful.  I bow my head and leave the office no richer than when I came in but lacking in hope.

And I turn on the TV or the internet, and I seek more information, and I read and hear and find myself saying that you can't give up.  When life gets too big you need to ask for help and keep asking.  Talk to your doctor...because although mine doesn't help (and others have told me they have the  same experience) some part of me is hopeful that it's an isolated incident.  that the lies we perpetually tell ourselves will somehow manifest truth if we just keep repeating the same mantra.

Don't give up.

I can't bear the burden for my daughter.  But I can stand with her as she struggles, so maybe she knows she isn't alone.  And instead of being ashamed of her inabilities to fit into the normal scheme of things, I can be proud of how hard she tries despite her obstacles that the average person can't hope to understand.

The struggle is real.  She is the bravest soul I know, and yet the world may never see how much it takes out of her to show up and stand at the doorway and contemplate walking inside.

Tuesday, December 27, 2016

Have you ever noticed, that the most popular real life writing is all about success?  We seek mentors who have been there, done that and overcome the odds.  But life doesn't always tie up in a neat little ribbon, and there is no "happily ever after" because life goes on, a new chapter opens and we find new challenges waiting when the sun rises (As it's been known to do after setting)  Sometimes we find ourselves facing the same challenges again and again, ones we thought we'd conquered or new twists on the old problem, or brand new out-of-the-blue obstacles that we find ourselves backpedaling to adjust our course and consider how to address, let alone conquer.
Can we conquer the new obstacles?  Absolutely.

I've found that a community of understanding, sympathetic, been there done that kind of folks is really, really helpful in getting through the first hurdles of any challenge.  And reading about success is instrumental in envisioning a path toward one's own success and generating hope.  But what about problems that don't tie up in a bow?  There is no end.  While I may manage my food allergies/intolerances, they will always be with me.  And I'll have my ups and downs, good days and bad days, frustrating moments when I lose several promising foods, offset by elation from people asking for a recipe after a party.

The same is true for mental health issues.  Anxiety and depression are ever present shadows, sometimes made invisible by the noon-day sun, and sometimes chased away by bright lights and loud music, but always ready to slip out and surprise you when you least expect them.  Their impact can range from a startled moment to catch your breath to an all out run-for-your life kind of fear.

In other words, sometimes success isn't really a thing.  You might have more successes than failures, but that doesn't mean that you're done.  Problem solved.  Waltz off into the sunset without a care in the world.

We're all in the middle of a journey, and that journey will have ups and downs.  There's no doubt that there is value in hearing about the successes.  Knowing that others have those ups in their lives gives the rest of us hope and guidance.  But what about the downs?  Maybe it's just as important to hear something of the downs, so that we don't feel quite so alone.  In fact, maybe it's more important to hear about the lows so that we aren't stuck holding ourselves up to unrealistic expectations of never ending successes.

Sometimes life is hard.  That's true whether you have physical or emotional challenges, whether your challenges cross the line into disability status or are considered run of the mill (though no less valid or challenging).  When things get hard, remember that you aren't alone.  Success isn't defined by lack of challenges.  It's just a part of the journey.  Success means you don't have regrets at the end of the day, that you treat people well and did the best you could in each situation.  Ideally, your life will be full of many successes.  But no matter how many successes you enjoy, challenges will be present, too.  And they are just as important to share as the success stories.  Maybe moreso.

As the year draws to a close, I'm feeling inadequate.  But only because there are so many challenges we are revisiting or still looking to overcome.  I'm reminding myself that I'm not imperfect, but perfectly imperfect.  And if at times my struggles are more apparent than my successes, well, that's only because I'm at a rocky part of my journey.  That will pass, and what matters isn't the struggle so much as the way I address it and work through it.

In the new year, my goal is goig to be balance.  Rather than struggling with an unachievable "success", I'm going for a positive outlook.  More favorable outcomes than not, more light than dark, and a recognition that the challenges are just as important as the wins.

Friday, November 11, 2016

I've had a long, hard journey to get where I am now.  And I know there is a long journey left to come.  There is comfort in the fact that I'm not in it for a destination.  I'm no longer sure where, exactly, my journey intends to take me.  But I'm grateful for the experience along the way.

On this journey, I've met many individuals who are following a similar path.  They may have set out with different intentions, or had a different destination in mind than I did, but nonetheless we find ourselves following a somewhat similar path of learning and dietary adaptions and discoveries.  Symptoms overlap, research correlates to other research, experiences and diet may differ somewhat but the overall journey remains very similar.  

Dietary changes are hard.  Even harder is the learning process, learning not just to rethink what you eat but to reevaluate the entire learning process that got you to this point in life.  What you eat isn't something to take for granted.  There are so many variables in our diet, from pesticides to genetically modified organisms to preservatives to artificial flavors and colors.  Some are likely perfectly safe in small amounts, but our diets contain so many small amounts that the amount we ingest is no longer negligible.  Others are safe for some but may trigger problems for others.  And while there is limited research that helps us begin to understand what's going on, the far reaching implications are still hard to comprehend.  

Hey, I've been at this for over a decade and I'm still struggling to grasp the enormity of it all.  

What I haven't talked about in a long time is the very real danger of over compensating.  
I recently found myself engaged in conversation with another journey-taker.  Her daughter has been very sick, finally able to participate in life again after being bedridden for several months.  After giving up on western medecine, they discovered some food intolerances and an allergy to pesticides.  The trouble comes in over compensation.  While I have no doubt that the food issues are making a big difference, they are still looking for things to eliminate.  
The trouble is, you can't stop eating.  And a very limited diet is no help to anyone.  I know, I've been there.  It's so easy to do, especially as a parent who has kids that depend on me; and limited support (due solely to a limited understanding in how chronic digestive issues work rather than lack of care) I am constantly battling the temptation to stop eating.  So I get it.  
But I listened to the hoops she has jumped through, and watched her bristle as I gently suggested some less-herculean efforts that might yield a similar response.  So I bit my tongue as she described the emotional isolation and their solution (which sounds just as nasty as the original symptoms, involving a variety of detoxifying herbs and recovery systems after indulging in forbidden foods.)  And then she started listing more diets that they are slowly adding to the original, proudly increasing their limitations while increasing supplements to make up for what is being removed...
I had to say something.  And I had to share.  
Just because food is a trigger, dos NOT mean it is inherently evil.  
Gluten is bad for me.  What it does to one kid is flat out evil.  But in itself, it's just a grain.  

I don't believe that there is one diet that works for everyone.  I don't believe that natural foods that have been used by native cultures for generations are inherently bad for everyone.  And I believe that this truth is universal.  Different people have different needs, and while various diets work well for broad spectrums of individuals, it's only because their individual needs happen to overlap.  

That's right.  While I may think that the American diet has a surplus of wheat grains in it, I don't believe we should ban wheat.  And while I am concerned about any monocrop (especially corn); I also don't think we should ban it.  Any monocrop is dangerous.  And there are people who can't tolerate wheat, or rice, but might do okay with corn.  Everything in moderation.  

A healthy diet is a varied diet.  If you are still having symptoms after eliminating one food, please, please, please don't go overboard by eliminating every other food you think might possibly be suspect.  Listening to this one particular case, I couldn't help but wonder if they'd tried a moderate route.  Just give up the gluten and stick to organics for 6 months.  6 months is a very long time in the life of a 10 year old.  But it takes a very long time to heal from malnutrition caused by food intolerance.  It takes a very long time to heal both physically and emotionally from long term digestive problems.

I understand the desire, the desperate desire that borders on need, to feel healthy.  But total elimination for life is not a good answer.  Elimination diets work by eliminating the suspect foods, and then slowly reintroducing them while watching for symptoms.  It's a challenge as a parent because a) you want to be available and dependable to kids and b) you don't want your kids to suffer. Life goes on, and when kids are young it goes very, very fast.  There isn't always a tomorrow because by tomorrow, your kids may have moved on.  But patience is still key.  Give the gluten free (or corn free, or dairy free, or all organic) diet a chance to work before choosing another restriction to add to that one.  Consider carefully re-introducing eliminated foods if you don't get the results you were looking for.  There is no one size fits all diet.  There is no magic cure.  It took time to get this miserable, it's going to take time to heal and relearn what "normal" looks like.

Most of all, it takes a long time to rebuild trust with food.  It's something that is supposed to nourish us, but when it bites back, it's hard to risk eating again.  It's still essential.  

Tuesday, November 08, 2016

Recently, an author I follow posted a lovely infographic (which I don't know how to snip and share appropriately) about how small amounts of allergen can be fatal.  She mentioned living in fear of something so small taking your life.

The thing is, I don't want to live in fear.  Knowledge is power, and fear is sort of an anti-power.  It's a weapon used against the masses, and it's getting out of hand.

Yes, I have allergies.  And yes, a very small amount of allergen can make me miserable.  And yes, I've had breathing issues and I've been told anaphylaxis may be an issue.  But does that mean I have to live in fear?

I could.  I could bury myself in my room, and never leave.  I could stop eating anything that didn't come from my garden.  I could let it escalate, and grow, until I was paralyzed.  It would be an easy thing to do.

But you know what I do instead, even though it's hard?  I go to the store, week after week, and trust companies not to change ingredients without telling me.  I visit people's houses, sometimes in a mask, and hoping they don't react poorly.  Trusting them not to have just popped popcorn or used cornstarch or overused cleaning supplies.  Eating, in general, is hard.

But I do it.  A lot of people I know do the same thing.  Throwing themselves out there, trusting food.  Sometimes successfully, sometimes not.  The more "nots" that we have, the harder it gets but we persevere.

Because what else are you going to do?  You need calories, and growing them all ourselves isn't an option.  It seems silly to those who have never had reason to mistrust food.  But after being burned repeatedly, it takes someone strong to keep going out there and trying.  That's why we need transparency in labeling.  That's why we need clear food labels that tell us what we're buying, how it was grown, and clear answers about packaging (Which can be dusted with cornstarch, for those not in the know).

We can't eliminate all allergens.  But we can make all allergens easier to live with.  

Wednesday, November 02, 2016

More than a label

We like labels.
Labels help us to understand individuals.  They help us to understand ourselves, to get the help we need and are instrumental in getting the accommodations needed for school or life.  Labels can be a good thing, but we often go a step too far.
Labels are only post it notes, they help us to understand our differences but they don't, and should never be expected to, define us.
I experience food allergies and chronic digestive symptoms.  I am not my symptoms, nor my restrictions.
However, I find that I feel like I am of less value to society because of my unique situation.  And, as I talk to others in similar situations, I discover that they also feel inferior due to their restrictions.  Inexplicably, we also at times feel like martyrs because despite our symptoms life must go on.  So we shower, take whatever symptom limiting medication we can tolerate, and put on our masks.  Public faces, with forced smiles (carefully practiced to appear natural), and borrowed energy.  We box up our symptoms the best that we can and pretend to be normal.
Until we can't.
And then we need to own up to our symptoms, our labels.  And then we become filed away under "potential liability," or "weird" or "crazy".
We can't access the world in the same way as others.  And our labels can either enable or entrap us.  Ironic isn't it?

Tuesday, September 13, 2016

Food Irony

Tonight I was preparing one of our favorite, or at least most frequent, meals.  Essentially I take whatever leftovers we have that sound good together, add some veggies, heat them up and scramble in a few eggs.  If Penguin is not planning on eating with us, I melt in a bit of cheese as well.

It's fast, easy, and also serves as comfort food.  It turns leftovers into a second serving (and there have been days where I make pasta or rice simply because I want to turn it into second servings)  As providence would have it, we've nicknamed this meal "hash" since it's pretty much a hash up of all the still edible leftovers and we never really get the same meal twice.

Not long ago, I was talking to my mom when I mentioned using leftovers again like fried rice.  Before I could get too far, she made a disgusted sound and said it reminded her too much of what her mom used to do.  Which was throw leftovers into a frying pan and scramble in an egg or two and call it hash.

My mom hated that meal when she was growing up.  And to be fair, I've seen some of the recipe booklets from the 50's and I swear, people back then had some very questionable tastes (Like lemon jello with chicken salad in it as a delicacy)  And my given diet is drastically different than theirs, namely that mine tends towards veggies and theirs would have been more meat and potato-ey.  So, it's quite possible that her version of hash and mine vary in appeal.  It's also possible that her leftovers were less than appealing to a young child to begin with; making the leftovers even less so.

Then again, maybe my version of hash will go down in the history books as unappealing goop.

At any rate, I love that my experimenting led me to create a meal that my mom never once considered serving because she found it so unappetizing as a kid.  And that I nicknamed it the same thing my grandmother named hers.  I've racked my brain and can't recall having hash; unless it was hash browns.  I do recall that my grandfather occasionally got a different meal than my brother and I and it may have been hash. But I never got a good look at it, and accepted that it was for grown ups.

Is my meal palatable?  Well, Mr Violets hasn't complained.  He's even offered to make rice so we could turn it into hash...So it can't be too bad.  The kids, however, reserve judgement.

Like most kids, they'd rather have pizza.  Even if it is gluten free and dairy free from a box.

Tuesday, September 06, 2016

Invisible Disabilities

It's so easy to judge.  In fact, sometimes it's an important facet of survival.  Our instincts about people and situations have been honed over generations to help keep us alive.  Our guts tell us when to stay and when to run.  They aren't always *right* instincts, but they are there for a purpose.
Unfortunately, this innate ability to judge can come with a high cost.  We stop thinking, cease to remind ourselves that behind a facade is a human being.  Pain isn't always written on their face, the potential of pain and suffering never is.  But it's still there.
We've come a long ways since the days of witch hunts, where individuals with various physical limitations were cast out as damaged by the devil or "marked" by witches.  We understand genetics and at least some medical conditions and agree that there are currently limits to medical science.  We see the person inside the body impeded by a wheelchair, put up signs in braille to help blind people find their dr's office in a large building, add ramps to buildings and paint curbs blue to make the world more accessible to those with limitations.
And yet we continue to judge.
We go on social media and rant about special snowflakes, we question the need for service animals for diabetics and epileptics and PTSD survivors.  We critique slow movers, and slow learners, and motorized scooter users.  We fail to see the person inside the every day individuals who are struggling.
We look at smiles and automatically, we see healthy individuals.  We don't know what's going on inside, but we assume that they have resources.  Can walk to the corner, volunteer an hour at the PTA fundraiser, make a few phone calls.  We assume that their resistance to any of these things is purely personal.
And sometimes it is.
But sometimes, there are deeper set objections.
People with food allergies may be reluctant to participate in food related affairs.  Maybe that's reasonable and maybe it's not, but they are the ones managing their symptoms and living with the consequences.
People with digestive disorders have unique needs and may be unreliable.
People with chronic pain may not be able to stand for 20 minutes at a time, or drive the carpool at the last minute, or might need to cancel plans so they can take a stronger pain killer, or just can't participate because their personal limitations have adjusted.
Some people may need help lifting groceries or children, or struggle to push a cart but otherwise look perfectly healthy.
However, we miss these problems because when people with limitations take care of themselves, they often appear "normal".

That, I think, may be the problem.  In our society, we have no problem helping those who are suffering.  What we struggle with is understanding that many of our accommodations and support systems are in place to prevent as much suffering as possible.  So, no, the lady with a rod in her back doesn't look like she's in constant agony.  But if she were to lean over and pull the cans of soup out of the bottom of her cart, she would be.
The person with dietary restrictions isn't laid up in bed every day, but only because they are managing their diet.  They aren't trying to spoil donut day.

When someone needs accommodations to function normally and appear "normal"; they have invisible disabilities.  It doesn't mean that they are any less of a person, just that they need to be a stronger self advocate.  It might also mean that they don't know exactly what they need to be successful, they only know some of the potential pitfalls.

We need to learn to accept these limitations that we don't see.  Even as someone struggling with "invisible disabilities" raising kids with the same issues, I'm struck by the ever present conundrum:  Everyone has issues.  We're no one special.  Except, we are still people.  We aren't trying to ask a lot to be included (maybe permission to bring our own food)  We still have a lot to contribute to society.  But only if we can figure out how to navigate our way despite our limitations.

Now, when I see someone roll their eyes about a "lazy" or "irresponsible" individual, I wonder if there is something else going on.  And I try to accept it.
Building a better world is the end goal for all of us, right?