This is part of an on-going series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. If you would like to read the whole series, please scroll to the bottom where you will find links to the other posts in this series. – Pat

by Julie Hemker

Julie Hemker, author of “Living with Sacral Agenesis” series on TDWI

Life goes on whether I’m having surgery or not; whether, I’m on bed rest or not; whether I’m in recovery or not. Life zooms past me. Where do I fit in? I started back modestly to work after my spinal surgeries. Oh how exciting to get back to work where I add value and feel productive. I’ve been waiting literally a year. Why do I not learn? It was a huge adjustment for just the few hours I put in last week. I sat in a chair which was not ergonomic for my back and it really, really impacted my ability to sit at all. It set me back with my pain which has been improving. I was at a level, in my house, doing little tasks where I felt confident. So confident that I didn’t think a couple hours of structured sitting performing a high pressure job would be an adjustment. It left me feeling very naïve and disappointed. Seriously after 49 surgeries I haven’t learned?

Baby 069Well if experience has taught me anything it’s that every surgery is different. The one consistent thing is you have to jump in and try to know your starting point. I took that plunge and am making strides towards working more! I’m also acutely aware of how very lonely it is in my house all day alone. Thank goodness my best friend is Stella, our yellow lab. When I was on bed rest for so many months without much interaction with others I was so bad off it almost didn’t register. I was in survival mode. Now I want and crave human interaction and being busy. Thank goodness for my father who comes over every day to have lunch. He’s done this since last February 4th. What a trooper. I get to grow our relationship each day and have some actual human interaction. When Mark walks through the door from a long day’s work I’m so happy to have someone here with me. It’s not that I don’t know how to be alone because I think I excel at it. It’s about attitude and choosing to be happy and optimistic and going with that. That’s what I do every morning.

So why does practice not make perfect? I think the brain is adaptive. I know the pain from different surgeries only when I experience it again. Then I can say, “Oh that hurts like my ankle fusion,” or whichever procedure it is most akin to. I think emotionally we are wired to protect ourselves too. Each surgery there is this frustration in one way or another. It’s not until I get there again the feelings remind me of another time or just plain give me the blues. The best thing of all is that there is always tomorrow and the choice to remind myself I’ve gotten through this 48 other times; surely I will be fine again. Besides its good to be at a new mile stone – that is how recovery goes. The good thing is to be on the other side and not in the suffering mode and madly searching for the right surgeon. I just need the patience to get through the steps. Like the past has taught me, it’s going to be alright. I’m reminded of a song to bring a smile to my face, the Monkees, “Daydream Believer.”

Links to the other posts in this series:

Sunshine: The Joy of Getting Back to Normal

Time is on my side, yes it is…

Road Trip (My Life with Sacral Agenesis) 

The Beginning – Julie’s Mom’s Story 

A Day in the Life with Sacral Agenesis 

Julie’s Mom’s Story – Tackling the Birth Defects, One Step at a Time 

My Life After the Fall 

When You Are Feeling Down, You Need a Hug

Time Will Tell (What’s Next? Dealing with Sacral Agenesis)

When Times Get Tough-Watch a Movie:  the Power of Distraction in Chronic Pain

Growing Up with Sacral Agenesis:  What It’s Like to Have a Pediatric Problem in the World of Adult Medicine

In Chronic Pain and Playing the Waiting Game

Failure of Transition – Going from Peds to Adult Medicine with a Congenital Condition

Oh We’re Not Gonna Take It Anymore…

Raising a Twin with Sacral Agenesis – A New State of Normal

Eureka! A Surgeon is Found – (aka Julie’s Happy Blog)

Happy Birthday Jules! 38th Birthday, 48th Surgery

The Flood