I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

Future: A Sonnet

There are moments in this life when you cant fake it.  There’s no surviving on wit. You must come legit.  Legit you must come with the masochist to whom you cater.  You cannot be less, only greater. There’s only now. There is no later. So put on your waders. 

Lets wade in the future since the present is stained. Lets break the chains. Lets leave the strain.  Lets say our prayers. Lets look forward to a new day. Let the possibile play.  


An Insider’s Guide on How to be Sick

I did not write this, but needed to share it.

“Never say the words ‘this is not my life’

This pain that wakes you screaming in the muzzle of the night

That woke your lover, chased into another room

into another life

This fevered fainting

This trembling chest

This panic like a cave of bats

This nurse drawing blood wearing doubled gloves

This insurance doesn’t cover that

This hurried paycheck of doctor after doctor after doctor

This stethoscope that never hears your heart

This hospital bed

This florescent dark

This save your prescription with side effects worse than the disease

This please let me have one month where I read more poems than warning labels

This not knowing what the test will say

This pray pray pray

This airplane’s medical emergency landing

Shame when you can’t walk

Shame when you’re home alone sobbing on another friday night

Say ‘This is my life

This is my precious life

This is how badly I want to live’

Say Sometimes you have to keep pulling yourself up by the whip

Take punch after punch to the face forward

To the head up

And still uncurl the fist of your grief like a warm blanket on the cool earth of your faith

Say every waiting room is the clime where you will finally take shape to fit into the keyhole of your own gritty heart

To open mercy

To open your siren throat

Say every fever is a love note to remind you that there better things to be than cool

Fuck cool

Fuck every pair of skinny jeans

From the month your muscles atrophied to a size two

Say fuck you to anyone who asks you if you eat enough

Say how do you not know that is so fucking rude

Remember you never have an obligation to fight the hurricane in your chest

Especially on a day when another healthy person suggests ‘you would feel so much better if you would just focus your breath into a Buddha beam of light

Like that blind is going to miraculously dissolve the knife that’s been churning in your kidneys for the last six fucking months

Say Sunshine, please go back to your job at the aroma therapy aisle at Whole Foods and leave me alone

I know how to help my body

God does not expect me to use my inside voice

God knows how goddamn hard I am working to become a smooth stone

So I can skip on my back across this red red sea

So I can trust deep in my screaming bones

Everything is a lesson

Lesson #1 through infinity

You will never have a greater opportunity to learn to love your enemy than when your enemy is your own red blood

Truce is a word made of velvet

Wear it everywhere you go

Bandage the window where you screamed at the mountain for forgetting your footsteps

Trust that mountain is climbing you

Especially on the days you inevitably want to avalanche everyone who loves you

When you can’t walk from the bed to the bathroom without clenching at the walls

When you can’t imagine you can fall to pieces in another’s sturdy arms and still be seen as whole

Remember, the universe only became the universe when it shattered into dust

And that shattering is the one thing you can always trust enough to tell you

the truth is so quiet

you may never have heard it without a stethoscope pressed to your chest

That is to say in the house of your compassion its possible illness will be the landline

And its how you will begin to hear the world clear as a pin dropping

The downpour of its eyes

The long quarter of its broken throat

On my most broken days

when my faith is a willow and the pain has nothing but an ax to give

The only thing I want more than to die

is to live

Is to live to hear my neighbor play his music obnoxiously loud

To get cut off in traffic fifty more times

To get broken up with while standing in line at the DMV

To have another doctor drive another needle into my skin for the hundredth time

So I can say, for the hundredth time, that needle is the needle on a record player, Doctor, everything and I mean everything can learn how to sing”

~Author Unknown

Feeling shitty but totally “in love”

I had a really triumphant day Tuesday that turned into one of the worst days of my life with gastroparesis. I had wanted to share some pictures of me celebrating (I rode a carousel) being able to get my driver’s permit.  

But Ive been feeling so shitty, literally, that I havent thought much about anything else, much less putting them to paper.

I will say this : love, real love, is UNDERrated. Real love is when you can look at a man and tell him you just shit yourself in bed and he is completely unphased and says “Aww baby. Im sorry you feel ao bad. I love you.

When a man tells you he loves you in THAT moment or he sees you looking like this

AND thinks you’re the most beautiful woman in the world. His woman. That’s love ya’ll. Real love.

Love at its core is this: That in sickness and in health, with shit in your pants and ugly on your face, it finds the best in you. It knows the song in your heart and singd it back to you.

I dont give him nearly enough credit for all the ways he really loves me.

Fingers: A Prose Poem

Fingers trace everyplace
and into the base of his back, Encouraging the pace,
of his secret being buried in my skin, That’s the ace … in the hole.
Fingers trace down my vase.
And I brace.
As he reaches the chas, it’s a race.
We are breathless, trying to circumnavigate,
the space … the time.
We both take what’s ours,
while giving grace,
with fingers laced,
nothing gone to waste.

Chris’ Healthy Heart Fund

Guys, this is my beloved cousin, Chris.

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On Sunday, February 8th Chris went to the ER with severe abdominal pain. The doctors at UNMH determined that he had a blood clot that was preventing blood flow to his kidneys.

Chris did not realize it at the time, but he was experiencing Heart-Failure.

Chris’ Heart-Failure is a side-effect from his pre-existing diagnosis of Atrial Fibrillation or “A-FIB.” If not treated properly, A-FIB causes blood clots that can result in stroke, heart-attack and other dangerous outcomes.

Chris’ heart has been determined to be at a 20% ejection fraction measurement, where a “normal” heart should be between 50-70%. (This is a measurement of how much blood the left ventricle pumps out with each contraction.)

…After 10 days of being closely monitored, Chris was released on Tuesday when medication began to stabilize his condition.

We hope to get Chris’ numbers up over time. His condition is not curable but it is manageable with medications and serious lifestyle changes.

Chris needs rest. He will rely on a number of medications for a while; some of them he will be taking for the rest of his life.

Chris still has a clot near his heart that is preventing him from getting a shock-treatment that would likely improve his situation.

Chris’ existing health insurance expires in March! His doctors have advised him not to go back to work until his overall health has improved considerably.

This fund will help assist Chris with medical bills and will help support a program of healthier eating.

Chris needs all the help he can get as he is transitioning to Medicaid (and whatever else he can apply for), during this financially stressful time.

http://www.youcaring.com/medical-fundraiser/chris-nelson-woods-healthy-heart-fund/308050#.VOoKe414m7s.facebook

Let me be my own heroine: A Ballad

Because I’ve had my share of let downs and a promise will never do

Let me be my own heroine.

Power is never given and I’ve paid my dues

Let me be my own heroine.

Sometimes things don’t come full circle, but they will do

Let me be my own heroine.

If I’m trying to make it work and seem a little blue

Let me be my own heroine.

When every direction is bullshit and all I do is rue

Let me be my own heroine

When I’m in a whole different place and it all seems so askew

Let me be my own heroine.

When my demons come out to play and throw shadows at you

Let me be my own heroine.

My words may get in the way and I’ll speak riddles, construed

Let me be my own heroine.

If I set myself ablaze and you’re watching while I do

Let me be my own heroine.

Even when I’m sick, even when I’m brusied

Let me be my own heroine.

Chronic resillence is what I do

Let me be my own heroine.

I will make mistakes but, find purpose when I do

Let me be my own heroine.

Don’t spit your pity at me when just your ear will do

Let me be my own heroine.

When I’m ready, I will share it with you

Let me be my own heroine.

It’s a tall order, only filled by a few

Let me be my own heroine.

People will hate you, people will love you

Let me be my own heroine.

Just let people do what they do

Let me be my own heroine.

Make no mistake, I appreciate you

Let me be my own heroine.

Lets just be very clear about the expectations due

Let me be my own heroine.

have an obligation to speak my truth

Let me be my own heroine.

I can make my own way, I always do

Let me be my own heroine.

Just love me unconditionally and be a soft place to fall when I do

But, let me be my own heroine.