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“I’m standing in the flames, It’s a beautiful kind of pain, Setting fire to yesterday find the light, find the light, find the light…”

Do you know how long my hand has hovered over the keys, afraid to hit “publish”?

I like to be good at things. I like my life to be functional, polished. I like to be seen as efficient and effective, capable and strong and brave. I’ll settle for okay, but I prefer talented.

The last six months have been an enormous time of growing for me, both mentally and spiritually, and I can say with certainty that one of the most important lessons I have learned about myself is that I am not good at endurance. I can rock the suffering…as long as I can see the light at the end of the tunnel. Faith? I got it…as long as I can feel some sense of a lesson in the end. And to be totally honest, some of what I call peace may be a bit of shrugging and giving up. When you have a chronic disease, people kindly say things like “You are brave. I could never deal with what you deal with!”  Horse hockey. Yes you could. You would have no choice. I am not brave, I am afraid. I am not strong, I am terribly weak. I am not skilled at enduring, I am desperately hanging on.

But I love where I am.

Pain is a gift. Oh please, dear one who is struggling, please don’t click away in anger, because I know the feeling that this is ANYTHING but a gift. I know the desperate anger that comes with longing that has no ending, that feeling of just wanting one day, one hour of calm, before your body betrays you and reminds you yet again of your frail humanity. I promise I know, and I have cried plenty of angry tears too. But the pain that batters my body around, reminding me daily of lost time, lost ability, lost babies, that pain extends to batter my heart too and the bruising has made it softer.

But it’s not hard for me to talk about empathy. Empathy isn’t what keeps the hand hovering over the publish button. It’s fear and it’s shame.

I never realized until this year how we conceptualize pain as something to triumph over or give into. We celebrate unmedicated birth as though it is the strong women who can endure. We talk about high and low tolerances. We self describe, using words like “I’m a baby about pain”. We lift up athletes who play through the pain. We see pain as an event- it has a beginning, a middle and end, and like an Olympic sprinter, we give gold, silver, and bronze medals to those who sprint well, with minimal complaining. And the problem is that when you have only experienced a sprint, then a marathon can’t be understood. Sure, running is the common theme here, but that is where the similarities end and the fear and shame begins.

I remember a teacher in high school telling me once “Your reputation is all you really have!”  I don’t think he intended to, but those words stuck with me and made me terrified to ever disappoint anyone. In the last six months, I have had to disappoint people. I’ve had to cancel plans or say no more often. I’ve had to give less effort in order to save energy. I’ve had to rest when I really wanted to play. Shame.

I’ve walked to the pharmacy every single month with my head down, don’t make eye contact, and cried every single time I leave. Don’t get me wrong, my pharmacist has been wonderful, very kind and caring towards me. But the shame and fear I have felt is paralyzing. I hate it. On the outside, I look fine, totally healthy. They can’t see the pictures I saw of my surgery, with my insides bonded together from adhesions and endometriosis. So I fear being judged and critiqued. I fear being thought of as a wimp, a girl with a low pain tolerance, a girl who just can’t push through a little pain. Shame.

Be honest. Come on, you can do it. You’ve had those thoughts about someone. I know I have.

But here’s the gift- in some ways, that teacher was right- my reputation is a big deal. It’s just that I now have realized Who’s thoughts about me are important. I have to let go of the fact that there will be a person, doctor or otherwise, who looks at me and instead of seeing me, they will view my pain through their lens, and how they would handle it.  And I WILL come up lacking. I have to let go of the fact that there will be people, even people who dearly love me, who will secretly think I am just not doing the right things to deal with this disease. I get it- they are sprinters. The gift is that I can love and honor these people without letting their opinion of me hold me hostage in shame.

I don’t know why God has allowed me to suffer. That isn’t the part of the marathon that I get to see yet. But I sincerely would not trade this marathon for the sprint, and miss out on the utter joy of grasping onto my Daddy’s hand daily. The marathon is long, and difficult, and I need Him beside me. There is sweetness in being unable to do anything but pray. There is sweetness in insomnia and taking deep breaths and saying “hold on sweetie. Mommy needs a minute” and giving a hug to a friend who gets it because they are marathoning too. Somehow, that sweetness comes in and invades and chases the bitterness of shame and fear away.

So next month, I will try. I will try to hold my head up when I pick up my medicine. The walk from the car to the store is part of my marathon.

Deep breath. And publish.

Email me at brandy.followingbutterflies.org

Follow me on Twitter @brandyb77

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