Hoof Beats

I am a total geek.  My whole life I have loved to learn.  Biology, anatomy and physiology have been my primary areas of interest which works well given that I am a physician.  But I love to learn about most anything; music and history are at the top…mathematics and physics are not really even near the list, however.  Travel for work is often enjoyable, as my work travel is almost always associated with learning.  New places.  Fun experiences.  Classes for learning.  These are the ingredients for a fabulous time for this life-long nerd.  But as is the case for so many areas in my life since I nearly died, this week has been different for me.

This week, I am in Nashville for a global learning conference for Ehler’s Danlos Syndrome, a rare disease that is marked by collagen that is too lax.  (Simple version: think people who are a bit like Gumby; stretchable.)  The reality is that the laxity is really only the tip of the iceberg for these patients and there really never are simple versions when we discuss humans.  This is a group of diseases that leads to a spectrum of symptoms including lifelong joint pains, chronic fatigue, gut dysfunction, fragile skin, heart rate control issues, brain fog and inattention, immune system dysfunction, headaches, spinal column instability and the early onset of fairly profound joint degeneration to name a few.   Some of these patients have fairly mild disease, and function quite well day to day, but others end up in wheelchairs with feeding tubes before they are 20 years old.  Universally they have been misunderstood and marginalized by healthcare providers who do not recognize or validate that their diseases are real and not all in their heads.  Very few states have providers who will take on the complex navigation of their care, and it is common for these patients to travel thousands of miles and wait up to (and over) a year just to be seen by specialists.

Why am I here?  Because after our wreck our oldest daughter continued to deteriorate long after she should have started to recover, worsened by medical care that should have helped her.  After months of worsening, and directly because of God answering prayers, we discovered that she has Ehler’s Danlos Syndrome; which has really changed the trajectory of all of our lives.  And as we began to understand this condition, we have also seen that it is because of the way that God knit her together her neck stretched in that car, when mine or any other normal collagen person’s would have broken.  Her neck stretched and didn’t break.  I have had 5 separate experts in EDS care tell us this without any solicitation.  “Wow.  Your daughter would have died if she didn’t have EDS.  Do you understand that?”  And from their mouths I have heard the voice of God over and over; “Your lives have continued because of miracles.  Your daughter wouldn’t have lived if I hadn’t provided the way for her life to continue long before you nearly died on a dark road in 2017.” 

There is an old quote that states, “The eye cannot see what the mind doesn’t know.”  With knowledge, we have been able to navigate her recovery with much greater result.  As my mind has learned, I have been able to see my patients in a proper light as well.  Imagine my surprise when I realized I already had patients in my clinic who have struggled with this disease.  Some of them had never been given a diagnosis before we sat down and worked through their symptoms and exam findings.  Grown adults have wept in my office, tears of relief that someone finally validated them and their life of suffering from a diagnosable disease, not just something that is “just all in their head.”  And God has been bringing me more and more of these patients.  So, at the prompting of my sweet nurse and friend, Katrina, we are here this week in order to gain knowledge to help us be better providers for people who desperately need a physician to listen to them and help them.  And I am here because I want to learn how to advocate for my own children and in turn teach them how to advocate for themselves in the future.

So why is this different than any other education work trip?  Because this is intensely personal.  And because we are still in the thick of Naomi’s recovery.  And because other of our precious children also have this syndrome.  And as I learn about the spectrum of dysfunction in EDS, the scope of issues I can fret over grows.  Will she struggle with that?  Will he lose function every decade of his life?  What parent needs more things to worry about?  Healthy children have endless potential for success, struggle and failures for parents to lose sleep over.   Perfectly healthy children can start out vibrant and end up in a wheelchair without EDS.  And while knowledge about disease has always geeked me out before, as well as increased my abilities to care for others, this knowledge feels like it has the potential to drown me. 

So as I boarded my plane, I reached out to my prayer partners.  “Please pray for me.  I want to see and learn. But I am afraid that what I learn will cause me to despair or fear for their futures.”  And from my sweet Elasta-Girl I was given this:  “You Israel, my servant, Jacob, whom I have chosen, the offspring of Abraham, my friend; you whom I took from the ends of the earth, and called from the farthest corners, saying to you ‘You are my servant, I have chosen you and will not cast you off,’ fear NOT, for I am with you; be not dismayed for I am your God.  I will strengthen you, and I will help you, I will uphold you with my righteous right hand….I, the LORD your God, hold your right hand; it is I who say to you, ‘Fear not, I am the one who helps you.’  He goes before you, mom.  He will never leave you.  Listen for his voice.  Father, I pray for mom that she would be able to hear you.  Hold her close to your heart.  Help her to hear you when anxiety overtakes her.  Jesus, bring her peace.  Let her learn and be blessed.  In Your precious name, Amen.”  Thank you, God for the blessing of being her mother!

And God continues to be so very faithful.  This conference has been EMPOWERING!  As I have sat in the classes and walked around through the sponsor area, I have been blown away by seeing beauty everywhere.   People with EDS are made so beautifully; many of them have very long arms and legs, long slender necks and beautiful long fingers with delicate wrists.  Their skin is soft and fine.  Many of them have very gentle demeanors.  I nearly fell over when I looked down at a girl getting her wrists taped, and the shape of her wrists and hands and lines of her arms looked exactly like one of my children’s.   God immediately answered our prayers by opening my eyes to beauty, not dysfunction.  And it has continued in each class.   I have learned something in each session that God has assigned in my mind to a particular patient or patients who would benefit from it.  I have learned something in each session that gives me hope for the future of my family.  I will be fully honest, I have choked up several times.  But I have not felt despair, not a single time.   

God has also opened doorways for continued pathways to healing and wholeness and restoration for Naomi while I have been here.   While having rare diseases is shared among a relatively small group of people, being a doctor who cares for rare diseases is an even smaller pool of individuals.  Many of my colleagues in this group have also been forging through in patient care with little available information, and little to no understanding from their community fellow providers.  I have been blown away by the kindness and accessibility of these other providers.  Their willingness to help our family has left me staggering.  “Just call my assistant, we will get her in and get her seen if you decide you’d like to have help.”  We are so much stronger this year than in 2018.  Let me clarify further, Naomi is so much stronger than last year, it’s actually stunning.  Available options now feel like icing on the cake and less like life preservers, but knowing they are available is a mercy from God.  And I will just add this here again, we have not yet encountered a single step of this journey without God lighting the pathway forward for us.  This is absolutely NOT because we are resourceful, and completely because God is faithful to His word, “I will turn the desert into pools of water, and the parched ground into springs….so that people may see and know, may consider and understand, that the hand of the LORD has done this….I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth.  These are the things I will do; I will not forsake them.” (Isaiah 41, and 42)

Since March 31, 2017 God continues to remind me kindly and lovingly, and has continued to gently remind me here; God is over all of this.  All things have been created by Him, through Him, begin in Him, and end in Him.  My children have not been made with mistakes.  They were knit together by Him, and He knows all things, and doesn’t need a class or conference to teach Him.  He knows my children’s stories and He loves them infinitely more than I ever could.  Our lives are defined by who God says we are; infinitely valuable, loved completely, known fully.  We are all living in bodies that are broken, outside the Garden; all susceptible to disease, death, pain, etc.   But after Jesus, God sent us a counselor, comforter, friend, the Holy Spirit.  I am not facing EDS without the Author of Life attending my needs.  Our children do not have to walk in this life alone.  Jesus promised that we would all struggle, but that He had overcome the world.  And through His overcoming, our children will never be without hope.

As an aside, you may be wondering, “What’s with the zebra’s?”  The old adage in medicine goes like this, “when you hear hoof beats, think horses, not zebra’s.”  It’s a quaint way to remind health care providers that common things happen commonly.  Most patients will walk into our offices with common conditions, as rare things occur rarely, so the majority of people you see will not be struggling with rare issues as they are statistically far more likely to have common ailments.  Which is great, unless you are a person with a rare disease.  So the Ehler’s Danlos society has adopted the zebra as its “spirit” animal, if you will.  Beautiful zebra’s, each one with a unique combination of symptoms that will effect them uniquely.  Interestingly, a group of zebra’s is called a dazzle.  I like that.  I am raising a “Dazzle” of zebra’s here in the Stick Together Stewarts.  Shine bright, babies.  You are my heroes.