This is part 10 of a series of posts by Julie Hemker, a young woman born with sacral agenesis, and her Mom, Charlotte Schild. In this post Julie describes what it is like to be in constant pain from complications of a rare condition and to have to wait for the health care system to offer a solution. Julie is one of the most optimistic people I know, but her optimism is being severely challenged by The Waiting Game. As always, I am grateful that Julie is sharing her story with you, my dear readers. 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
Time and time again I’ve said in my head, “Patience is a virtue.” Repeatedly I remind myself to be patient with my medical situation. What do you do when your patience has run out and distraction is difficult to find? How do you maintain a positive, optimistic mind set when you’ve been waiting so long for resolution?
I’m on my 6th month of bed rest from first, an assumed CSF leak and now diagnosed tethered spinal cord, stenosis and a heterotopic ossification (where soft tissue forms into bone) at L4. I’m accustomed to medical trauma, pain, limitations and set back being born with sacral agenesis and undergoing over 40 major surgeries. Luckily I do have an innate inner strength and ability to see opportunity where others see road blocks. It feels so different this time.
I am very proactive and have identified and am in the system at the number one hospital United States for Neurosurgery. They have been absolutely wonderful. The problem? It has been trusting and depending on doctors in my current system that were not right for me and my current situation. Luckily I realized this and proactively sought outside help. I believe in being my own advocate. If I don’t do it, who will? This is my life and I have to do the work to land myself in the hands of the best surgeons to address my diagnoses. I’m so close to getting a date for the consult and pending surgery.
In my heart I have the upmost faith in all the work I’ve done to ensure the best doctors treat me. I have faith it will all work out, in its time. It’s like the light at the end of the tunnel is starting to peek through, I’m just exhausted. I’m exhausted physically and emotionally and my work is not done. There is no sigh of relief until that appointment is set and we are on our way. It’s like holding your breath for so long that you feel dizzy and unable to think. I rest on my past experiences, which has been exhaustive, to which serve as proof – I will make it. I rest in the arms of my husband and the consoling words from my parents, family, in-laws, friends, yet there is a lingering loneliness.
I think I’ve spent so much time being rock solid strong to get through this acute situation that I haven’t allowed myself to have an emotional response. I get upset and have bad days. It feels so different today. Perhaps it’s because the end is so near I can almost taste it. There are no words to make me feel better and it has to be frustrating to those around me who love me. It’s as if my spirit is a flickering light. It will never extinguish so I’m not worried about that. I just have to make it through today.
Being in situations like this I guess we have to focus on one moment at a time. I know this to be true. We feel empowered and in control of our situation if we make a decision for ourselves. I decide today, to just make it through the pain and exhaustion of today. I decide today to accept the love offered. It’s so easy to shut down at this point. When I said, I would crawl to get the health care I deserve – I was not kidding. I am on my knees at this point needing all the support to get up and back in my bed.
I have my phone next to me at all times, anxiously awaiting “the” call to get me closer to relief. I am optimistic and hopeful just so thoroughly worn out to overtly proclaim these things as I usually do. My heart bleeds for help. I’m not a quiet person. In fact, I’m quite articulate and proactive but my voice feels very quiet and I hear little except the whispers of hope which give me the strength to make it.
No one else could put it better than Tom Petty in his song “I Won’t Back Down.” Petty says,
“…Gonna stand my ground, won’t be turned around, And I’ll keep this world from draggin’ me down, Gonna stand my ground and I won’t back down.”
As he reminds me,
“Hey baby, there ain’t no easy way out, Hey I will stand my ground, And I won’t back down.” Thank you, Tom Petty for reminding me to stay strong.”
Links to the other posts in this series: