a burning desire to get my life back

Four years ago, I said to myself, “this will all be over soon.”
Three years ago, I said, “there’s no way this can last forever.”
Two years ago, I said, “they figured out what’s wrong, just a matter of time before it’s fixed.”
One year ago, I said, “the last stride. a few more months until you’re back to a normal life!”

This year I said, “this may never end.”

On November 18th, 2016 I woke up from excision surgery thinking my painful journey with endometriosis was over.  But ten months later, during my honeymoon, I started having chest pain, trouble breathing and stabbing pains in my shoulders which we discovered were symptoms of thoracic endometriosis. In one month I will be undergoing thoracic surgery for my endometriosis. This will be my second excision surgery, and my third overall for endometriosis. I am also having abdominal adhesions and ongoing ovarian cysts removed. Developing new symptoms and discovering that I need more surgery has been devastating. At the age of twenty-five, I am considering a hysterectomy. It’s like a nightmare I can’t wake up from.  This past year has been such a tease as I was granted a little taste of normalcy.  I married my best friend, got a new job that I love – after three years of being unable to work – but within a few months I am right back where I was before, in debilitating pain.

I think back to my 21-year-old self when my journey with endometriosis began, and I am thankful for the ignorance and sustained hopefulness.  But I’m not the same girl I was then. Over the last four years of living with this disease my hope and faith has been tested to the point that it is nearly shattered into pieces.  My ignorance and innocence overridden by harsh realism.  The frequent doctors’ appointments, treatments and ER visits never stopped like I had planned.  I never was able to run again. I don’t dance I like I used to – just walking to get the mail can be a struggle.  Surgeries have left me with new symptoms and pain even worse than the ones before.  Another day spent in bed, sleepless night, holiday with family missed, friend let down and vacation ruined.  Sometimes I wonder if it’s worth the effort anymore.

I recently watched an old video my mom found of me when I was five years old, dancing around the living room in an Esmerelda costume dress. I was laughing and smiling without a care in the world.  I was running, jumping and stretching all over the space.  It was like watching someone else.  Someone very distant but so familiar.  Someone I knew well and missed so much.  The future she had in front of her was one of so much beauty, but it would be invaded by pain.  More pain than she could ever imagine, and with decisions she should never have to make.

That night I cried so hard and felt a depth of sadness I never thought possible.  For the first time in a while I didn’t feel numb or lost.  Deep within me I could feel that little girl. She was begging me not to let her go. Beneath all that fight and pain she was still there, but I had forgotten her somewhere along the way.

I’ve thought about giving up.  I think about it almost every day.  But the one thing that keeps me going is a burning desire to get the life back that I once had.  I have been beaten down emotionally and physically.  My heart has been ripped out then lovingly patched back together by family and friends.  I can feel the sun shining, the potential life I could have and that little girl reaching for me.  I am reaching back for her, and I’ll never stop.

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