Julie Hemker sacral agenesis

When I was growing up, my theme song was Simon and Garfunkel’s, “I Am a Rock.” I use to sing it all the time and listen to it on the record player (the “old days”). “I am a rock, I am an Island, and a rock feels no pain and Island never cries.”

I thought if I ignored my feelings, nothing would hurt me and I would remain this strong, untouchable girl. Then, I matured and realized it’s neither realistic nor healthy to ignore feelings or put them somewhere you think they won’t touch you. The past couple weeks have been living testimony to the impact of my emotions related to my medical condition can be.

Sometimes, it is difficult to overcome obstacles in the face of adversity with absolute optimism. In my last post, I described how I had fallen and bruised not just my body, but also my ego and my confidence. One of my “things” is to not really complain or go into too much detail unless confirmed by a doctor. I’m also the type of patient who won’t stop doing what I am doing unless a doctor tells me too. It’s as if I don’t want to be too dramatic or draw too much attention to something, especially if it was because I fell. I felt foolish for falling a couple weeks ago.

 

Then, It All Unwound…

I have a CSF leak at the lumbar level and have been on bed rest for the past 3 months. I’m “allowed” to get up minimally during the day. On the day of the fall, I had gotten up to let our sweet yellow lab, Stella outside for just a few minutes. I thought, “Oh I’ll sit here on the sofa and wait for her so that I will be right here to let her back into the house.”

sacral agenesis
Julie and Stella

Because my vision and depth perception are “off” (side effects from the CSF leak), I misjudged where the sofa ended. As a result, I fell off the end of the sofa and landed on my hip. My body propelled down and back causing me to whip my head up very abruptly. My glasses flew off my face and landed behind me about 6 feet across the room. Immediately, I had the stereotypical concussion symptoms. I was nauseated, increased tinnitus, dizziness, fogginess, disorientation etc. I was home alone and was a little afraid to move because I landed right near the leak. I was so dizzy with extreme vertigo (a sensation that the room is spinning around) that I feared becoming sick. I was able to make it to my bed and take an anti-emetic. I was hoping it would help calm down the severe nausea, however, it didn’t help. Oh well, a girl can dream!

After the fall, I had increased pain, intense nausea daily, confusion, agitation, increased emotional responses, complete insomnia, painful (nearly deafening) tinnutitis, stiff/sore neck, and more. Luckily, my very skilled and experienced Neurologist had an opening the next morning. I took it, despite knowing the drive downtown would be difficult—just from the CSF leak alone—but I had to see him! He’s very brilliant and has experience with patients with complex congenital spinal anomalies, even my rare condition (sacral agenesis).

He ran many tests over the next several days. Fortunately, all the tests have come back negative with no infection and no brain bleed. It was also good news that the large amount of metal in my pelvis, (located just below the CSF leak) the result of a Pelvic Stabilization procedure in 2009, had not moved as he feared. He was also concerned the metal could have been jarred enough to fracture the bone, including vertebrae, in an already fragile and volatile area.

It turns out, I only sustained significant soft tissue damage in the head, neck and lumbar regions. Although these injuries are very painful, I am lucky, indeed, that some of the more serious complications described above had not occurred. The area around the CSF leak is bruised which explains the increase in pain in that region, as well as throughout my body, which took the brunt of the fall. I have Post-Concussive Syndrome which explains all the cognitive dysfunction, including word searching and difficulty thinking.

 

Following Difficulties

This has been a very frustrating experience since I have always overcome difficulties by throwing myself into work. The type of writing I do for work is a high level analysis which I have not been able to do for the past two weeks because of the cognitive dysfunction. I am very much looking forward to returning to work once my symptoms have cleared because my work provides me with a sense of personal worth and an opportunity to add value.

My neurologist is sending me to an Ophthalmologist because of the intense eye pain, difficulty focusing as well difficulties with depth perception. Also, I will see a neuropsychologist for memory and cognitive testing. I’m already anxious because I am the type who gets nervous when taking any test, even medical ones. One time, when I wasn’t able to “pass” the Romberg test (finger-to-nose test), I felt like I was a failure. But intellectually, I realize that is not a reflection of me if I can’t find my nose with my finger, (although it feels quite strange). I’ve been assured the questions the neuropsychologist will ask are quite simple so some of my nervousness has been alleviated. And, the testing is not until June because they want to wait a little to let the brain can heal and see if any damage from the fall has self-corrected.

 

Overcoming Adversity

It’s somewhat interesting that I work in a field based on the premises of Positive Psychology as that is how I’ve led my life. Further, that type of behavior was modeled by my parents and the medical professionals I encountered over the years as well.

Yet the past couple weeks, with the confusion and agitation, there were times when I struggled to find the “power of positive thinking” part of me. It made me quite uncomfortable. Where had “Happy Julie” gone? I decided to stop putting pressure on myself and let all the neurological side effects stabilize. And sure enough, as my symptoms subsided, I found her again.

No, I wasn’t bouncing off the walls with excitement, but I found my smile and sense of humor. Ahhh…such a sigh of relief. Sure every medical challenge brings unique difficulties to overcome but I know, in my heart, that it will all be okay. Why? Because I’ve always been okay in the past. With a smile and humor, I have clarity of mind and perspective, as well.

I don’t keep track of the number of surgeries and spinal punctures etc. that I have had to be egotistical or to just throw around the numbers. I do it because it gives me internal strength. It’s like self-talk. I think the number of surgeries that I have had by now is forty-seven. I think about this and just sigh and think, “Hey, Julie, you can get through anything!”

I have a strong faith along with the best medical professionals surrounding me. And I can’t say enough about my husband, family, and friends who love me and never leave. It’s overwhelming to receive that type of open-hearted love and compassion, yet it gets me through everything. Together we pass over each “speed-bump.

Yes, it’s scary at times but when you have others to cling to who watch over you with such care, I know we will make it. No, it does not change reality. Yes, it’s painful and there is more to come. What it does do…it makes reality easier to grasp and navigate since I’m not alone. Before I know it, I’m a couple weeks out and able to write a little again and have conversations where the “word searching” isn’t as severe and I’m feeling like me again.

It is through the words of Simon and Garfunkel I have often found strength and comfort. Their music inspires me and calms my soul; like poetry to music. If it seems like I write about music frequently, it is because there are very few memories in my life that don’t hold a song to them. I like to think that it is the little things in life that help turn around a rough moment. Spending time with my loved ones, listening to a favorite song or hugging my sweet Stella re-centers me!


This is part 5 of a series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. I am so grateful that they have been willing to share their stories with you, my dear readers, about what it is like to be born with a serious birth defect that required 47 surgeries by age 37. And, what it is like to raise a family when one of your three children has a chronic condition that needs frequent healthcare interventions. I hope you have loved getting to know Julie and Charlotte and their family/friends and Julie’s dog, Stella, as much as I have. In this post, Julie describes how she is coping with complications related to serious injuries she sustained when she fell off her sofa.  —Pat

6 COMMENTS

  1. Hi Ms. Julie, I hope this email finds you in good spirits. I just happened to come across several of your articles while researching congenital defects. I have found your articles to be both engaging and enlightening. I have never met anyone with Sacral Agenisis but found you to be very insperational. I hope you have made significant strides in your health since I read this article. I will keep you in my thoughts and prayers. Looking forward to hearing from.

    Sincerely
    Richard

  2. oh, jules, your words touch my heart!!! your ability to face all of your challenges is inspiring to all of your family who love you so much, as well as all your readers!!!!

    uncle charlie and i send you our love and prayers……auntie!

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