As I continue on my journey of life I feel like I am starting to come out of hiding. Maybe this is what real “growing up” feels like. Maybe being 30 is the shit.
As a child I adopted this hiding thing when I didn’t want to feel my own emotions or those of my family. I would go into my room, lock the door and listen to the positive tunes of Hanson. Sometimes I would write my own music, always starting with lyrics, probably as a way to process the words I was hearing from myself and others. Looking back at these early works, hiding and not feeling heard was a theme.
At other times I would hide in the corner of my closet, carefully hidden behind clothes, hoping for someone to come find me even though I made sure I was so well hidden. I wanted to be alone so I could process my emotions, but I wanted to be found because I wanted to be heard. It was a double edged sword.
As I started entering “adulthood” I believe I got trapped in metaphorical closets of the mind. I was simultaneously starting to experience the serious pain of Endometriosis. I wanted more than ever to be seen and heard, because I didn’t want to be in pain.
There were quite a few closets in my mind. But I told myself I would only be stuck in them temporarily. I was working on that music career while I nannyed for the kid with the crazy mom. I was just surviving. Waiting for someone to listen to me; to come find me. I did that for about a decade.
But all along that person who I needed to listen, who I needed to look for me, has had to be me. I have to open those closet doors. I have to walk out alone.
I’ve spent a lot of my life waiting
To see if the pain will stop
To see if I’ll feel better
For them to love me
For them to come home
For them to let me go
For a true purpose
For the wind to stop blowing
And the weather to get warmer
For a parcel in the post
For an epiphany to solidify I am human
And not a ghost
For my plane to arrive
And waiting to take off
I’ve spent a lot of my life waiting
For things to begin
It has been one week since I saw Dr Seckin in New York City and my belief that I have Endometriosis was more or less confirmed (technically speaking Endo can only be confirmed when the tissue removed during surgery is analyzed – but the symptoms make it very obvious).
During this past week I have felt several different things, in stages, such as experiencing grief.
I have been trying to understand where the me comes into this disease. How has this disease shaped me in the course of 15 years (or perhaps my entire lifetime)?
Endo is a mysterious disease that hasn’t really been figured out yet. Where does it come from? Who knows. Is there a cure? Not yet. Is is common? YES. 176 million women worldwide and 1 in 10 in the United States have it.
There is this idea that if I am “cleaned out” I will be better. I will be rid of the disease. I would have to have deep excision surgery for this to be so, but it is expensive (out-of-pocket $25,000!!!) and no Endo surgery guarantees that the pain will go away or that the disease won’t come back.
How do I manage and live with it is what I keep coming back to. Even if I have surgery, will I still technically have the disease in my body for the rest of my life? How does that define me?
Part II of my trip to NYC. Once again from the train (thanks for the free, good WiFi Amtrak):
I have stage one Endometriosis (out of four – four being the worst)! It feels so good to say that.
After 15 years of bullshit, Dr Seckin told it to me straight. I have it, he can clean it out with deep excision surgery (not the all too common and harmful laser) and then I should be good to go.
Of course he can’t guarantee that it will never come back during my life time, but I have lived with it for 15 years too long. If I can have 15 years pain free after surgery I’ll take it!
It could be done as soon as May or June, but financing is the tricky bit. I’m getting all the info sent over from the office tomorrow, so I don’t know the cost yet. But he works out-of-network with all insurances, meaning you have to have good out-of-network benefits for any or all of it to be covered. I have Rhode Island Medicaid, which has been great in Rhode Island, but obviously will not work whatsoever in New York. So, I could likely change to a plan that might cover some of it, but how much would that cost per month and what would it cover?
I’m not worried about any of that. I’ll figure it out. I have followed my gut and stuck to my guns on this journey thus far, so I will continue to do so.
Fucking Tuesday for the win, am I right?!
Good things happen on Tuesdays. Airfare is cheap. It’s a good day to travel. It’s an unassuming day. People are just getting on with things on Tuesday.
For me, this might be the most important Tuesday in 15 years. I am on the train to New York City to see the Endometriosis specialist Dr Seckin.
I get really anxious when I go to the doctor. The thing with me is, is that I tell doctors everything that is going on and suggest what it might be. I dare say I know more than them when it comes to my health. In fact, I was the first person to figure out I might have Endometriosis, years before a doctor even used the term. I’m agressive.
After years of feeling like I was not being listened to by most medical professionals, I adopted this behavior. I feel that it got me to where I am today, on this train, going to see a specialist.
But every time I see any doctor I get anxious. I’ve been let down so many fucking times I barely have any hope left each time I have to talk about my symptoms again. Will they listen to me this time? For real? Will they just tell me how to manage my “condition” for the next 6 months, next year, next five?
I hope today is different. I hope today is the most important Tuesday in 15 years.