Julie Hemker, author of

This is part 6 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 her anxiety about having to undergo yet another procedure…and how the antidote to her fear is hugs from her family, including her big yellow Lab, Stella.   You will find links to the first five posts. Pat

Wow, what a ride these past couple months have been for me and my family. Always able to return to the positive and remain the fighter who gets through everything, I feel it is important to express what it’s like to be in the trenches of something medically scary, painful and shockingly new.

First, I have a CSF leak with pseudomeningoecele (collection of CSF in the nearby soft tissue).  Then I fell and sustained a complex concussion. Now what?

Luckily I am recovering from the concussion, which was an unwelcome setback. Still, here I am, four months of lying in my bed – on “bed rest” – because of the CSF leak at the lowest lumbar level I have. My vertebrae end at L4 because of the Sacral Agenesis and my sacrum never developed in utero.

One thing I know from my educational and professional background is that highly positive people also experience all emotions with strength. It takes immense amounts of fortitude to remain calm and focused on what needs to be done, expressing my emotions, while also taking charge of my health care.

We have reached a crossroads medically. I have completed a long enough time period, on complete bed rest, without significant improvement and am being sent on to neurosurgery.

Sometimes there is no way to sugar coat reality and this is one of those times. The diagnostic scans are needed to show the specific location of the CSF leak (so far only palpable under the skin).  I cannot have an MRI test because of prior surgery, a pelvic stabilization, where they placed a 7” metal plate and 8 screws and a bone graft in my pelvis.  All this metal is directly below where my current issues exist. The metal completely distorts the image and renders it useless diagnostically. Even the CT, which can still be used on me, is distorted to some extent.  Because of my unique anatomy and scar tissue, it is nearly impossible to see any changes or issues.

So my medical professionals are left with only one diagnostic test to perform – the myelogram. This test requires a needle be inserted just shy of the dural sac where they inject Iodine that can be seen on scans. They are already sure nothing will be visible because of the reasons stated above.

I had 4 of these in 2010 with the CSF leaks I suffered and they surmise that due to one of them a leak resulted requiring a blood patch at T11-T12 the level (a very risky and painful procedure). The amount of fear and anxiety thinking about it makes me quiver knowing I will have to be that strong again.

I know, cognitively, they will have to do the test and I will get through, but it is lonely, cold and eternally frightening back there, alone being brave while they stick needles in between vertebrae and inject dye – knowing physiologically what could happen if I move or someone’s hand makes the slightest ill movement. I get through it because of my faith and I know my husband and parents will be there when I come out of the room. It does not take away the fear or pain during and after the procedure knowing that a blood patch is next.

One of life’s lessons I learned when very young is that you have to be your own advocate because no one will do it for you. My parents taught me that and empowered me to take charge and to always, always, be aware and know what is being done to you and why.

Here I am at this crossroads and I’m taking charge of my health care, with the minimal energy I have left. I will crawl to ensure the best medical professionals are working on me. After over 40 surgeries, 10 of which have been spinal, no one wants to do anything. They are leaving me, out of fear, in my bed. There is no quality of life. I’m not saying I want something done but I want the correct tests to be run, not because it’s what they usually do but because my anatomy (however unique) is taken into account as well as the risk factors.

At the end of the day when I try to sleep, through the pain, no one can take away my feelings of loneliness and fear. I’m so afraid of what will happen this time.

Because of the pelvic stabilization surgery in 2009 I am able to walk again! However, I never could have imagined the challenges which would arise in future diagnostic testing especially since the root of my spinal issues are always in the lumbar section – now difficult to image in any way.

Keep in mind, only 1 of my five tethered cords ever showed on an MRI and that was before the metal was implanted in my body. I was then in the pediatric world with the best care possible. He was skilled, confident and knew from symptoms and length of time when enough was enough. The problem is now, I’m afraid that no one wants to deal with me medically anymore because of the risk. I know and understand the risk, but I want to enjoy life.

I love summer. We sail, play with Stella (our yellow lab), cook, garden, grill out and enjoy the little sun the mid-west sees. I’ve always been an outdoor girl. Sure biking is out as is taking long walks, but we can take an evening stroll with Stella and I can use my walker.

It’s bliss to interact with the outer world. The smells in the air, the birds singing, tree frogs chirping just calms my soul. Right now, I’m essentially a shut in fighting for myself because sometimes life isn’t all sunshine and roses.

I feel pressure to be smiley throughout this process, but I believe to truly be authentic it’s essential to be honest with your feelings and share that. With all my heart, I believe that somehow, some day this will be resolved.

A Julie-Stella Hug

To remain empowered I break my day down into different segments to feel I have achieved something making it through a couple hours.  Each situation is what we choose to make of it as well as attitude.

I’m not negative, just discouraged. I need a hug really. Hugs are the best because they say what words can’t. It’s like I need a perpetual hug, but I’m lucky since I have Mark, my family, and Stella.  Ironically, Stella gives the best bear hugs ever.

There is nothing like the feeling of your lab backing into you, while sitting on the floor, leaning her entire back into my chest and torso. It’s like she needs a hug too. I rest forward on her sturdy body and wrap my arms around her and we stay like that – it’s as if time is suspended. Most of my time is spent at home with Stella which is why I speak of her so much. I spend more time with her than people. She is my guardian angel.


You can read Julie other posts here

24 COMMENTS

  1. I’ve been reading all night about my disease because I too was born with this, it was caused from a tethered cord. I am forever grateful that I have only had 3 surgeries in my life so far (I am 20 in August) but I truly do understand. What has messed me up the most is the neurological nerve damage that has cause bladder and bowel issues, it has been a tough ride for me especially through the teen years and in public school. I have always been so full of love and light because you are right, those who are so positive also experience every single emotion so strong. No matter what the situation, especially having to do with our medical problems it is so strong… But we also love strong too. We love and the best way to get through life with this disease is to be loved back. Nothing fills my soul more than love, real love. Whether it’s from family, friends, a lover, or like me and you.. A furry friend. I think it’s ironic that you have a yellow lab, I had a black lab my whole life up until last January. Broke my heart and still does today.. I have his ashes in my room. I could ramble on more about how much we are alike but I just want to let you know I admire you so much and your strength. It’s easy to get selfish and be so confused as to why this given to you to deal with but maybe one of the many reasons is so that I could come across your post and smile because I know there is someone out there in this world who understands me too. We are blessed to be alive and to have made it through this and I know one day we will meet, even if it is not on this earth. I don’t know if you will ever read my comment but I really appreciate your honesty with the world about your condition, I look up to you for that. I only hope I can be the woman of your strength in my years to come.

    God bless you.

    – Jaylyn Taylor
    (jaylyntaylor@icloud.com)
    (Atlanta, GA.)

  2. I can’t even begin to understand the trials that you are faced with each day; you have to be a mighty strong person to keep on going with so much courage and positiveness. I will offer you all I have– “a prayer for your healing and improvement in your life”. I don’t know the date of your procedure but I just pray that on that day that Christ the healer will be with you in that hospital room to lessen your pain, to give you peace, and to keep you in his safekeeping. May you find favour before the Almighty and my hope is that a remedy will be discovered for the betterment of people suffering with Sacral Agenesis. Amen.

  3. Dear Julie:
    As I read your latest post, I kept scrolling up to look at your beautiful, smiling face. We don’t get a choice about what challenges life hands us but we certainly have a choice about how to deal with them. Your positive attitude is inspirational and it will surely contribute to your healing. Here’s a hug from me!
    Chris in Laguna Beach

    • Dear Chris in Laguna Beach,
      Besides the mere fact that typing Laguna Beach makes me happy so does your message. Thank you and it is true – attitude is everything. I was raised that way. It’s still having fun or letting your emotional release be the giggles. I totally get the giggles from time to time, in between I just laugh a lot which I guess you can tell because I smile, A LOT! I smile waking up from surgery because I know I’m awake and get to see my family. What’s made me beyond happy have been these responses. Thank you and I send the warmest of bear hugs from Indy, where there really is little sunshine or bodies of water. Talk a walk on the beach and enjoy the smells in the air and sounds of the ocean in my honor. I love water!
      Best,
      Jules

  4. Wow Julie – what a true champion you are.
    I have been working in the world of medicine some 25 plus years and it never ceases to amaze me the number of determined, fighting patients that also deliver all this compassion and love along the way. You and your story are a testimate to that.

    Good luck on your journey and my thoughts are with you.

    Scott in San Francisco

    • Dear Scott in San Fransisco,
      Wow I am in awe of your compassion to help people for 25 years in the medical field. It’s only because of skilled doctors and nurses that I am where I am today! It is true patients have the ability to overcome many obstacles with will and attitude and I believe faith. It is compassion and love from medical staff, family, friends, dogs :) that we do overcome. Thank YOU for what you’ve done to get patients in that place and the encouragement just your message conveys. You are a kind soul.
      Best,
      Jules

  5. Julie,
    You are such an amazing source of inspiration and strength. You have been such a ray of sunshine to me. When I feel down I just think of you and my smile gets back. I do not have the words to express how beautiful and amazing you are. We love you and want you to know that we are here 200% for you.
    With much love and gratitude.
    Nora

    • My Nora,
      Oh I love you so much and what I wouldn’t give for a hug from you and the family. I feel your hugs from afar very often! Thank you for always calling me despite how I may sound :) You are a rare gem that shines bright. We hold you dear in our hearts forever! Thank you for your kind words, you always know what to say when. You make me smile like right now writing to you! Okay I’m thinking of Stella licking only your feet :) She’s sorry but she’d totally do it again which now makes me giggle!!
      Love,
      Jules

  6. Julie,
    Thank you for inspiring all of us with your story and your willingness to “take the private public” and share both up and down times. A big hug from Washington, DC – for you and for Stella.
    Maggi

    • Dear Maggi,
      I truly appreciate the hug and for recognizing how difficult it this entry was for me to publish. It’s admitting to yourself that you’re scared which can be difficult. If you don’t slow down to just say it, it’s harder to keep on going. I will, with my hubby, Stella and family get through this eventually! It will happen :) In the mean time I love the hugs and have always believed in the power of a hug!
      Best,
      Jules

  7. Julie,
    It is rare to see such inspiring courage as yours. One of my early childhood inspirations was my grandfather who, according to Holocaust survivors from his town, chanted from Psalms his unwavering faith in God, as he led his congreagation to certain death. Your courage and optimism are equally inspirational. Please, keep it up for the sake of all of us.
    Dov

    • Dear Dov,
      That story is ironically beautiful and so touching. I truly am not worthy to be in a comparison that impactful and grandiose. Your grandfather was amazing! So strong and resolute. I could and any of us could only dream to be a smidge of what he was.
      My life and strifes, although difficult right now for me, will get better, eventually. Thank you for such a generous comment. I can’t do it justice but thank you.
      Best,
      Jules

  8. From Viktor Frankl’s Man’s Search for Meaning: “Dostoevski said once, ‘There is only one thing that I dread: not to be worthy of my sufferings.’ These words frequently came to my mind after I became acquainted with those martyrs whose behavior in camp, whose suffering and death, bore witness to the fact that the last inner freedom cannot be lost. It can be said that they were worthy of their sufferings; the way they bore their suffering was a genuine inner achievement. It is this spiritual freedom — which cannot be taken away — that makes life meaningful and purposeful.” I hope you recognize how profound are your inner achievements and the meaning you make of your life with loved ones. I send you not only hugs but all my admiration. And my daughter (who has a stuffed yellow lab named Stella!) sends you hugs too (believe me, the best ever).
    Much love even though I don’t know you,
    Karen

    • Dear Karen,
      What an amazing quote! I love the hug and send hugs back and too your daughter’s stuffed animal Stella. What a small world. The greatest name :) I think we all know each other or are connected somehow making it every day. Its those who are open to realize it and the beauty of being a part of a world that can feel small at times too, like right now. I’ve been amazed at these responses and am thankful for your kind heart and hugs.
      Best,
      Jules

  9. Dear Julie-Sending you the best and warmest hug I can muster. I’ve read your latest post and thank you for your openness and honesty about your feelings and concerns. I cannot imagine your strength given all the challenges you describe. You’re an inspiration to me andI’m certain to all who follow you on TDWI.

    I urge you to continue to be brave, enjoy your spouse and family and know that there are so many who are wishing you well. Please keep sharing your thoughts.

    Thank you.

    Marty

    • Dear Marty,
      To say I’m so overwhelmed with the outpouring is underestimating how I feel. I take and give a bear hug back. I won’t ever stop being brave. I just needed a breather and to express myself so others know it’s normal to not always be exuding sunshine. It doesn’t make me negative, just scared, discouraged and needing a hug :) Thanks for reading. My Mom’s next entry which should be next week is going to be fantastic and then we will be able to go back and forth since right now in the story, I’m too little to write. What I can write about is what is NOW. Like I said I know I’ll get through but wow, I’m so surprised and touched you wrote. Thank you so very much. It is really encouraging and gives me strength.
      Best,
      Jules

  10. Oh Julie, I wish I could give you some of those important/uplifting hugs. Believe me, my thoughts are hugging you right now. I am praying that you can stay strong and make it through this seemingly endless down time.
    Is there anything that I can do to ease your and Mark’s load just a tad? Come and give some kind of care, chat, run errands, bring or cook dinner, read to you, work in the yard, clean, mend? You name it. I really would like to help.
    Heide

    • Dear Heide,
      Oh with all my heart I feel your hugs today and everyday and so does Mark! We love you guys so much and I wish you lived closer because we could hang out :) We can’t wait to see you guys Memorial Day and we will connect and hang out in this dark bed room but it will be so nice. Heide, our relationship means the world to me. You are wonderful in-laws. I think I owe you an apology for not sharing as I have finally been able to do through this blog. I have a feeling you among many others are learning things about me they never knew. I’m a great faker but after 37 years I’ve come to realize very many things and this year filled with so many realities has shown me how short life is and what a waste of energy it is to not share all of yourself with people. It’s just not fair. How can anyone truly know you if you don’t share. I truly Love you guys and Mark, Stella and I can’t wait to see you!
      Love,
      Jules

  11. I work with Pat Salber and am an avid reader of The Doctor Weighs In. I’ve been following your story and am so impressed by your courage and patience. I wish you the best. Thank goodness for puppies and Moms.

    Mari Edlin

    • Dear Mari,
      Hi! Thanks for your words of encouragement. I hope you do love the series. It will get really fun with my Mom’s next entry because then I’ll be old enough in the story to remember – you know realistically. Yes this time has been extra challenging and I was assured that it’s okay to give the reality side too since it’s there. Thank goodness for puppies indeed :) Thank you.
      Best,
      Jules

  12. Julie, I just tweeted but wanted to follow-up with a study that has relevance to what you are enduring. Amabile and Kramer did a study that they published in Harvard Business Review that they entitled “The Power of Small Wins.” While it relates to organizational settings, I believe it applies to you. They found that people’s “best mood days” were those in which they made progress towards a goal. What I call… “baby steps.” And that’s where you are at, I imagine… you have seen progress throughout your ordeals… and now look at the baby step of progress you are about to endure…and even imagine. The power of positive strokes. Be well. I am thinking about you. Mitch

    • Mitch,
      Thank you for your response. I am overwhelmed really. I’m not quite use to being so brutally honest about my feelings but I do think it’s essential to get in touch with all that makes a person a person.
      I look forward to reading that study. I hold a bachelors degree in Psychology w/Biology emphasis and work in a field based on Positive Psychology (which pretty much is how I have lived life) and truly believe in the concept of “perceived control” and in this situation and really any, breaking challenges into manageable sections empowers an individual. In fact it works in parents and works in the work place and I have immensse interest in reading this study! Thank you so very much!
      Best,
      Jules

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