Monday, August 5, 2013

Healthy People Playing Sick

It's hard living with an illness.  The forever kind.  The kind that will never go away.  It's hard because you have no idea what we go through every day and with social media these days, we know far too much about what's going on with you.   It's okay for healthy people to complain endlessly about the flu or pregnancy or the exhaustion of having babies.  But if I responded to your post about how exhausted you are caring for your baby with "believe me, I know, I feel that way every single day" it would make you uncomfortable.  Because being healthy and "playing sick" is okay, but being real sick is not something we are allowed to do.  So those of us with diseases walk the mysterious tightrope of illness in America every day; keeping the secrets of our medical lives every day because you can't handle it or don't know what to say, while patiently empathizing with you as you patholigize the trials of daily life.

So here is goes.

It's really fucking annoying to hear you talk all the innocuous "good" ways your new diet has made you feel.  I am all for eating healthy and finding balance but when I hear you announce that you are suddenly gluten sensitive or on a raw foods juicing diet I just assume that you are looking for a socially acceptable way to go on a freaky diet and lose weight.  While I want to support you and every person's search for better health and happiness my sister has a real gluten intolerance, celiac disease, and I have watched her run from many a meal to vomit in the bathroom because a careless restaurant put croutons in her salad by accident and then just took them out before serving her - the mere crumbs making her violently ill for weeks.  Her illness makes even the smallest cross contamination (using the same wooden spoon - though washed, or sharing a toaster etc) cause havoc on her body.  Nutritional deficiency, vomiting, elevated inflammation markers, real stuff.  You may very well feel better when you cut out certain foods but don't pretend it's the same as a disease.

I am lactose intolerant.   When I eat dairy, I "suffer" like you.

But I also have lesions on my brain.  These are very different things.

While you drone on about how different and how much healthier you feel now that you eat a raw diet all I can think is "you are healthy".  That is the point.  You can experiment with illness because it's not yours.  Meanwhile I am wondering how I will get through 3 years of law school when I have periods of hours when the vision in my right eye because a lacy double shadow outline.

You might feel you run further now with less pain in your joints but there are some days that I can't even walk up stairs, or get into my bathroom without a crutch and it has nothing to do with what I ate.

I have lesions on my brain.

And I believe in natural anti-inflammatories, I take cherry juice and tumeric pills.  I do acupuncture and meditation for pain relief.  I believe in all the avenues but I am so tired of listening to everyone turn their spiritual and personal explorations into diseases tied up with cures.

Instead I wish that people could appreciate all that their bodies do for them every day.  The ways that our heart speeds up when our lungs slow down.  The intricate dance of heart rate and blood pressure that keeps us steady every time we stand up.  The ease in which some of you can walk across a street or up a mountain. 

Because those are things my body doesn't always do.  And I marvel at how well my body compensates.  How truly amazing the biology of our beings is.  Some days I sit at a traffic light and try to think back to before my accident, before I lost my mobility and I try to remember how it felt to just be able to walk.  No limp, no pain, no crutch.  How free I must have felt.  How small the world must have been.  How open a future when all there was to think about was what next.  

Now as I pack my inhalers and hand braces I try to really appreciate all the ways my body still works for me.  To appreciate how it has managed to compensate for the things at which it fails.  I try to listen to my body and give it what it needs.  A long bath.  A quiet hour.  A steak.

And maybe you could too.  Because one day you will have to face an injury or illness.  Real illness.  The kind they call "traumatic" or "devastating" or "progressive".  And you will lose things but gain things too.  And you will hate the people around you telling you that if you only ate a goji berry....

And to live this life with illness you have to practice a kind of grace and acceptance that few others will give back to you.  The win is the day to day.  The getting up.  The letting go.

So eat your juice dinner or your "gluten free" meal (which even the menu/label concludes is not actually gluten/contamination free which is why its safe for you but not my sister) but acknowledge you are doing it to feel BETTER than you already do.  Appreciate the health you have.  Realize it's not forever.

1 comment:

  1. Dear h,

    Crying reading your posts. Feeling solidarity seeing my vivacious, smart, creative college classmate facing life's challenges so humbly and beautifully. I came home from the hospital 2 days ago with a bag of pee attached to me, as the cancer has metastasized to the point that my left kidney can't drain and I've been in the same pain one feels passing a kidney stone for almost 2 weeks straight. No nurse, urologist, surgeon, etc has given me ideas really about how to live with this external bladder. So far I'm just wearing the one pair of pants I left the hospital in with a pocket big enough to fit it. I said, "And hopefully the chemotherapy shrinks things so that this can be removed," and my loving, magical husband said, "Or maybe you'll just have a punk rock ureter."

    We are so much younger than I ever imagined being facing such challenges. I am so sorry for what you are going through and so happy to be connected.

    Sending love,