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.

What I Don't Want to tell the Marathon Bombing Victims...

Yesterday I was at Mass General like I am so many days since my accident nearly 10 years ago. I walked down the same halls with the same limp but instead of people glancing away or studying me closely to decide whether they thought I should be parked in a handicap parking spot, now, and since the bombings, people looked at me with a mixture of wonder and compassion. Like they see me now and think “I wonder if she is one of the ones”.


And I am not. I sat in my home during that horrific event and the days that followed and watched with the world the chaos in my city.

But I also am. I was a victim. I had a trauma. I almost died of catastrophic injuries to an artery that took with it my leg.

And after years of feeling like people were sizing me up or refusing to see me it's hard to explain how it felt to be held in that moment in love.

Because having life long medical issues is hard. It’s draining. At times it is demeaning.

And I want to tell those victims of the bombing who didn’t lose limbs, the ones that still look pretty much the same from the outside but instead suffered deep arterial wounds, nerve injuries and soft tissue damage, I want to tell those victims that it does get better but it also gets worse. And I wish someone told me that.

That in the first months you are buoyed by the outpouring of love from your friends, your neighbors, your surgeons, and your own faith and gratefulness. You are held high on the joy of just being alive.

But. Then.

The second year comes, and the third and you start to realize, slower than one might think, that being alive this new way is really really hard sometimes. And I remember month after month asking the doctors when will I get better and them saying you are better and me not being able to understand what that actually meant.

Because what those doctors were saying was this is as good as it is going to get for you.

And I did p/t and o/t and yoga breathing and acupuncture and meditation, and bio feedback and got infusions and pills and breathing treatments and tried every stupid suggestion that came my way. But.

I have a nerve injury. And I lost three quarters of my blood.

And these things change the very way your body works. And I will never ever walk the same again. I will not run, I will not dance, I will not hike a mountain or play kickball at a picnic or carry a child down the beach. I will use a crutch sometimes, forever. I may one day use a wheelchair.

And I did not understand that for literal years.

So every time I hear the media talk about how the victims will get back to the same things they were doing before the bombing I think, probably not. And that isn’t defeat or letting the terrorist win. And after suffering such a life altering event there shouldn't be such narrow parameter or imposed rules on each persons "injury success". If a person is sad or angry or doesn't go right back to the way things were before the bombing it is not failure. It is not depression. It is grace.

After my injury my body changed but so did who I am. I carry inside me a terrible truth that brings with it great pain, but also great knowledge. And I believe that more time should be spent on telling the injured to find peace, find solace, find a new way. Because the old you is no longer there. And the truth is you might find that you don’t even want the things you wanted before. You might find that different things are important to you.

And here at year 10 my leg is actually worse than it was at year 5. The pain and the function. And a catastrophic injury is always catastrophic. Many of us will never heal completely.

And living through this kind of trauma truly is a journey. One that no person would ever ask to take. And in this journey there are great losses and the kind of deep appreciation that only those who have been there will ever know. These are the gifts found deep in the fabric of each of us. Layered below the terror and the anger and the what if's. It is not easy. I see the faces of bewilderment on the injured and it takes me right back to those first days. Because life for some of them will never be easy ever again. But they will find their peace. And such great richness that they never knew or held before.

Give them time to heal. Let this be their home.

standing next to me

i might not know how long i am going to live.  i might not know how good i am going to feel.  but it feels less like a time bomb now than just an uncertainty that i carry along with me.  and we all have it, just mine is more likely to come true. 

This Girl is On Fire

I am a women without children.  I am not sure if I even want children.  I love them, I do, but I also love Saturday mornings lounging in bed, not getting up until I want to.  I like being able to listen to the I, to the we, that means taking care of me and j only.  And I am not saying I won't ever have kids.  But I might not.  And it's annoying to me that women with kids seem to believe that if you don't have kids you must still somehow want them.  Like that is still what women are really for/about. 

And it's annoying when people act like by wanting to have a career, an intellectual life, a result to that $150,000 education and the file of degrees I earned, that somehow that is me being selfish.  Or that it's one or the other.  Or that if I decide to be a working mother that it is because I some how have too. 

And I love your kids because they are your kids, but they are not my kids and don't be surprised when I can't remember how old they are or whether or not they are walking.

Because guess what.  I really don't care.  Like you really don't care or remember what I got on my LSATS or what I am working on at my job/ in my classes. 

It's not that I don't love your child.  But my life doesn't revolve around your child like your life doesn't revolve around my trip to Italy.

And I am not allowed to get offended when you forget my promotion but you are when I forget your kid is allergic to brocoli.

Why are we women so insecure with our decisions that we need to prove that our choice is right for everyone.  Like if you stay home as a parent you are going to fill my facebook feed with peaks at how good it is to be home with two toddlers every fucking day.  No one believes you I might add.  Because we have all been around two toddlers - it's the reason some of us pass on the children thing.

And if we decide to be working parents we are always making condescending comments on how at least you can show your child what a strong mother can be and our career and we're so great.  And we all know it's bull shit because we saw that other mom's toddlers at the grocery store and we can't imagine doing that after a day at our job.

And those of us that may or may not have kids.   It's not because we are infertile.  It's not because we have commitment issues.  It's not because we want to have money.  It's just a choice like every other choice filled with personal nuances and public struggles and it's annoying when you condescendingly feel sorry for us when we are looking at you with your milk stained sweater and your plastic toy filled living room floor thinking thank fucking god we only have to be here for an hour.

And this will piss people off.
And this doesn't mean i don't love you.  And your beautiful, exhausting, amazing child.
And this also doesn't mean that i won't love my own child one day.
But really.  This is not a competition.  You can't win.  We are all in this together.  We are all exposed to that noisy kid on the train, and to the brilliant little dancer they one day become.

Let's just admit that every choice is equally hard and easy, happy and trying.  And most of all.  A Choice.