Sunday, November 17, 2013

Who you were..Who you are.


It seems like every day I encouter someone who would do anything to change a moment from their life.  They want to change one moment, one day, one hour, even one second and cancel it out or wish it away.  One moment, that came along and changed everything. This one moment defines who they are today, how they got to where they are, and what haunts them at night.

When this first happened to me, ("this" being illness, but I do not like to say it's name or even the world illness because I do not like to give it power) I thought I was the only person in the world who was haunted by a traumatic day from my past that didn't have anything to do with war, or things people are usually traumatized by..this trauma, it was from my own body. I thought I was the only person who replayed that fateful day in my head, over and over again when I went to sleep at night..and maybe again when I woke up in the morning.  I would call myself a fool for holding on to it so tightly, this one moment that I let define my entire life from that point forward.  I would constantly replay in my head the night before the morning I woke up and collapsed to the floor.  What if I went to bed earlier that night?, I'd think.  What if I didn't drink a diet coke everyday until I knew how bad it was for me?  What if I stayed an extra day at home and slept in my own bed, maybe I wouldn't have woken up like this..

Why was I holding on to it so tightly?  What did this moment mean to me?  I considered this moment, this moment where I fell to the floor in my dormroom and the subsequent weeks of physical and emotional tormoil that followed to be my defining moment- what changed me forever and what made me who I am.

But, is that true?  Why does this moment get to have so much power in my life?  I've been pondering this for weeks, as I wrack my brain to try to figure out why this seems to be the memory that sticks, when other things that have happened- graduating with a Master's degree, working as a therapist, learning new skills, maintaining close, meaningful relationships with friends, and completing and adding so many dreams to my list, seem to just be in the background.

So, what is is that defines me?  What is it that defines you?  I consider myself to be extremely sensitive, caring, and creative.  I feel strong empathy for others and like to volunteer my time to those less fortunate.  I love animals.  My family means a lot to me, as do my few close friends who have stood by me.

This has always been my truth.  This has always been who I am.  I was always the girl in elementary school who made friends with a child because I felt bad they didn't have any friends to play with.  I was always the child who wanted to save animals and would bring home caterpillars so they wouldn't be run over in the street.  This is me.  This is who I am, and who I always have been.  Why am I letting that moment define me?  Why am I letting the bad days create a label of "sick"?

The truth is, everyone has a moment in their lives that changed everything for them forever.  They are forever moved, sometimes frozen, from this moment in time that changed their view of the world or the view they have of their bodies.

What if we thought about who we were as people, before and after the moment that changed everything?  Are you still kind?  Do you still have that weird sense of humor that always set you apart, or that funny laugh that makes everyone in the room laugh with you?

Yes, illness has taken away so much.  Some would say it's taken away everything.  It might have taken away your independence, your ability to express yourself clearly, your ability to fulfill your dreams, start a family or maintain relationships.

But, has it taken away who you are?  Who you were born as?  Dare I ask, has it helped contribute to who you hope to be?

Monday, October 21, 2013

It's made me who I am

Here's the thing- I think that a lot of people try to deny who they really are.  It's hard to be a vulnerable, sensitive person in a sometimes cold and hard world.  It's hard to be different when it seems that those who are the "same" as everyone else have an easier time.
Those of us with chronic illness already feel like we're walking around with a red t-shirt that says, "I'm different", so to actually show that we're different, whether that means showing extra sensitivity, becoming tired quicker than others, or eating a different meal than everyone else can cause us to feel anxiety, sadness, and even shame.  I admit, I've been working on my feelings of shame that I seem to be carrying around lately.  Oh, let's face it, I've carried them around since the illness started. There's something about this whole being different thing that makes you think you did something wrong, or something is wrong with you.

But, what if it means something is RIGHT with you?

That's right.

What if, as much as falling ill is incredibly traumatic, it brings you right down to who you really are?  When you're in a flare, and in immeasurable pain, there isn't time or energy to cover things up, to put on  a show or to hide your feelings.  You are there- exposed, raw, and stripped to your core.  Your thoughts, your feelings, your hopes, fears, and dreams are right there at the surface.  Having the rare experience of having your dreams potentially stripped away from you is something not everyone gets to experience, and while it is so hard, it puts you in a place to really know who you are and who you want to be.

I still have my little pity parties sometimes.  I do, and it's okay to do that.  It's important to acknowledge your feelings and to not shy away from them- kind of like not being ashamed of them, right?  I've been doing that lately..I've been allowing myself to feel, even the darkest feelings.  When they come up, when diagnosis anniversaries pass and the pain makes itself known, I sometimes go to that dark place, and rather than tell myself to quiet down, to change the thought, I say, "what's the worst that can happen?  These are feelings.  They are emotions.  They are real, and they aren't going to kill you."

But even so, it does hurt sometimes.  It freakin hurts.  There was a day a few weeks ago when I was in a flare and I forced myself to go to work.  I try to always "show up" and do my best, just one minute at a time.  But on this particularly dark, rainy evening, I was feeling pretty awful, and on the drive in to work, I started to cry out of frustration.  "Why?" I was whispering while warm tears ran down my very warm face.  My icy cold fingers wiped them away, and at a stop sign, when no one else was around, I layed my head down on the steering wheel, face in hands, and sobbed.  "Please, please make this stop, don't you know I want to help people?" I said to whoever..God, the Universe..was listening.

Then, I received a phone call.  I was to meet a co-worker at a client's home who's mother had just made an emergency call to us.  This wasn't my client, this was an emergency call that came in, I had never met this child.  When we arrived, a 16 year old boy greeted us.  He was shaking.  We sat at a table in his kitchen and spoke to him while he tried to explain the years of anguish and pain he had gone through.  He would look at me from time to time, he'd hold my gaze for a little longer than usual.  I felt like he could see through me..I think he could tell I was "different" like he is.  Maybe.

He then said, "do you have any idea what it's like to be trapped in your own body?  To have no control over it?  To feel like you are trapped in there and no one can save you?"

Now, usually a session with a client is all about them.  And it should be.  Usually I am so lost in their words and their despair I completely forget that I am "different."  But, I admit, these words resonated deep with me, and I suddenly heard myself whisper, "yes.  I do know."

There was silence, as if he knew I was serious and wasn't just saying this to make him feel better.  I went on to tell him how strong he is, and how I would sit there with him through the pain, and that I wasn't afraid of it, and I knew it would pass.  I told him we'd work together to find a way out.

A look of relief came over his face.  Color began to come back into his cheeks.  We spent some time going over the history, and possible small solutions that could be put into place right now.

At the end of the session, he told me I gave him hope.  Then he looked at me and said, "You do know, don't you?"

Yes, I do.  And this..this few hours where maybe my pain helped bring hope to someone else..well, that just makes it all worth it.  I'll take the dark if I can give someone else a bit of light.  I'll take it every time.

Tuesday, March 19, 2013

Until it teaches us what we need to know

I've noticed a pattern.  Everytime something really great and amazing happens, I promise myself I'll post or make a video about it.  Then a week goes by, and something devastating happens, and I think it's silly to post about the good thing...because..what does this all mean?

Good News?  Last weekend I went to my first yoga class in years.  (See my first post, "yoga" to read about how that went.)  To my surprise in delight, I LOVED it.  I felt my heart sing as I glided into the motions of Barre, or "Ballet" yoga, with pieces of my childhood coming back to me. I watched my body move in the mirror.  I noted how much easier it was.  I felt myself about to focus, concentrate, hold poses.  Two days later, I went to yet another class.  Something I have not done in 9 years.  And on the way home..something happened.

It felt like a spring day and I just completed a second class with little pain.  I rolled my car window down, breathed in the air, turned up the music, and started my drive home.  It was then that I felt it.  I felt well.  Yes, well.  It came over me so quickly I didn't feel it approaching.  I could breathe.  Nothing hurt.  I felt light.  My heart beat in a different way.  My mind was clear.  I felt like my healthiest days in high school.  Health is in there.  It exists.

Fast forward to one week later.  I was on my work phone with the IT department when this sudden pain hit me.  Right ovary. Pelvis.  I had to hang up the phone, and I collapsed to the floor.  I was nearly screaming in pain, and nothing would give me relief.  I knew something was wrong.  I was sinking into my nightmare, but part of me didn't want to believe it.  How could this happen after such a high last week?  I made it to my Dr's office, with the help of my mom.  They walked me back to that same room, the ultrasound room, the room that always gives me results I don't want.

And, there is was.  The doctor pulled up the picture of my right ovary on the screen, and even his face dropped.  He pointed to it, and tried to move it.  But it didn't move.  He showed me how my left ovary moved, but my right didn't.  Slowly he said.."You see this?  It can't move.  It's covered in adhesions and scar tissue.  That's the pulling you feel.  And it's full of blood.  It's frozen.  That's the pain you feel."

I stared at the screen.  I was numb.  I literally did not feel a thing.  You'd think I'd feel like I was betrayed by my ovary, but really, I felt like I betrayed it myself.

"It's stage 4 endometriosis, Laura."  I heard the doctor say in the background.

At some point he left the room.  I slipped my clothes back on and stared at the screen.  I couldn't cry.  Some things are so sad that you can't form tears.  I don't think the body can register that kind of sadness.  I looked up at that dark ovary.  And I told it I was sorry.  "I"m sorry I failed you", I thought.

As I walked into the next room, the room where they would inevitably tell me about the next step, the surgeries, the hormonal treatments, the past two years of hard work flashed in front of my eyes.  Diet change.  Sacrifice.  Supplements.  Detoxes and homeopathic treatments that practically made me feel like I was going through an exorcism.  

Why?

I sat there.  They gave me pamphlets.  Told me I need surgery. Told me if I want a baby I should have one soon.   Told me if I ever want one I should have the surgery now.  I nodded and walked out.  Numb.

I let myself cry for the rest of the afternoon.  I let it sink it and come over me.  I let myself feel sad, disappointed, angry.

I don't know why this is happening.  But, I do know one thing.

It will go away.  Yes, it will.  I cured my cervical cancer and I will cure this.  I will.  All I need is a plan.  And I will make a plan.

In the meantime, I will give myself a few days to feel sad.  To allow the loneliness of this disease to wash over me.  I'll let it swallow me today.  I'll look outside and feel like I'm not a part of the living world.  I will cry and maybe scream.

Then, I will say to my body, "what do you need?"

I have heard that nothing every truly goes away until it teaches us what we need to know.

Teach me.  Teach me, so I never have to see you again.  Teach me, so I can take you away from someone else too.

Sunday, February 24, 2013

Birthday

It is my birthday.  Okay, well it is my birthday tomorrow, but tomorrow is Monday, and tomorrow is a working day, and I had this epiphany today.  So, today this post is being written.

Birthday's are hard.  They're hard for everyone, but particularly hard for those who are battling an illness.  Each year is a mark of what has and has not improved, and what has and has not changed.  We measure ourselves against other peoples' progress (let's face it, we do), and against our own progress in ways we shouldn't measure.  Because truly, those things can't be measured in the ways we think they can.

I could spend today thinking about all the things I should have now that I'm 28.  I could spend today thinking about everything I should have accomplished, should feel, should know, should possess.  I should be healthier by now, especially after how hard I work at my health.  I should be married.  I should have a child or at least be planning for one.  I should have more money.  I should be farther along in my payments towards my medical bills.  Should.  Should.

But, rather than talking about what I should have (which, I have been doing all week.  Okay, all month.)  I will talk about what I hope I never lose- those things I have acquired on this journey that I hope stay with me forever.

I hope I always have my desperate will to live.  Yes, there are days when I want to give up- days where getting out of bed is so incredibly painful I can't believe I'm actually not dead.  There are nights I cry myself to sleep, curled in a ball, praying for relief from the pain.  But there is always that desperation.  That loud voice inside that screams to keep going- that throws the doctor a look when they tell me there is nothing more they can do, that voice and that face that looked that doctor who told me I'd never finish school in the face and said, "watch me."  I hope I keep that stubborn pride.  I hope I keep that desperation, that stubborn, unrelenting fight to keep going, to see the world and experience, feel it and taste it.  I hope that voice never quiets down.

I hope I always feel excited at the smallest thing, like a successful grocery trip. I hope, on a day when I manage to grocery shop, cook, and curl my hair, I continue to twirl around and dance in happiness over my success.  I hope I always notice when the weather changes slightly, and when the cardinal in the tree in my front yard comes to say hello.  I hope the smallest things always remain the biggest things.

I hope that I always dream dreams that are bigger than most would imagine.  I hope I continue to push myself to move farther.  I hope I continue to create ridiculous goals in my mind (PhD?  My own therapy practice?) that make people look at me with bug eyes and shake their heads.  I hope I continue to have ridiculous ideas that I write down excitedly, and smile to myself when I think about them on a dark day.

I hope that part of me that pushes myself to the brink never shuts down.  I hope I continue to push myself, sometimes way too far.  I hope that on the days when I did push myself too far, where I cry and I pace or I fall to the ground, I still do find that moment to forgive myself and congratulate myself for trying.

I hope I can learn to forgive myself more.

I hope that I always believe I will be well one day.  Yes, there are days when I question it.  There are days when I question if I should reside myself to always feeling sick in some way, to not having the level of strength I wish for.  I hope I always come back to center, to that stubborn desperation that screams, "yes you will get better, you will have everything you want."

I hope that my intuition stays with me, even though on some days it is difficult to endure.  I hope that my ridiculous way of "knowing" remains.  I hope I can still sit in a room with people and pick up on their pain, so I may relieve it in some small way.  

I hope, that in the face of overwhelming odds that are still thrown at me, I continue to prove medical professionals wrong.  I hope along the way I can teach them something.  I hope, one day, what they learn saves someone else.

And, believe it or not, I hope a little piece of this always stays with me.  I hope I never forget my worst days. I hope I never forget the desperation, the pain, and the overwhelming sadness.  I hope that when people sit in a room with me, they can still tell, from my face, my body language, my presence, that I know pain, so they may feel comfortable enough to share their pain and their story with me.  I hope I don't forget my story, so I may always tell it, and so people may feel they can tell me theirs.

And, of course, I hope you find peace.  And health.  And happiness.  And everything you have ever dreamed of..and so much more.