Our Story . . .
“We cared so much for you that we were pleased to share with you not only the gospel of God but also our own lives, because you had become dear to us.” 1 Thessalonians 2:8
Where to begin? We'll start with the most important things you need to know about us and how they influence every decision we make. First and foremost above all other things - We LOVE Jesus, We LOVE each other, We LOVE our family and friends. Steve LOVES his mother's macaroni-n-cheese and her gooey coffee cake. I (Lee) LOVE doughnuts. My favorites are the old-fashioned cake doughnuts with a generous glaze and a Bavarian creme doughnut.
As we find ourselves in our mid-forties, we find ourselves in pursuit of how God can use our story for His glory, our joy, and to help others. Although finding ourselves on a difficult journey (medical summary/treatments at end of this section) we still say that we are living a truly blessed life by the grace of God. Steve and I met when we were 12 years old and have been best friends ever since that first encounter at Vacation Bible School. I am thankful to be married to my best friend of over 35 years! I have been blessed with a husband who loves Jesus with an unwavering devotion despite what might come our way. Steve is an amazing man that I admire more than any words can adequately express. He walks a life of incredible integrity and humble servant-leadership in all areas of his life. He is not only always there for me, but many others have been blessed by his care, knowledge, and leadership in the Fire/EMS field. He serves as the President of the County Fire Chiefs' Association, Chairman of the State Fire Chiefs’ Legislative Committee along with numerous board positions related to his work as a Fire Chief. He also devotes considerable time to several community organizations including Rotary Club, Chamber of Commerce, Together!, and Vice-President of our HOA. I am so proud of him and with pride announce he was honored as the 2017 Thurston County Leader of the Year! The fact that God loves me so much to prepare such a man for me leaves me without adequate words. Having the joys, struggles, and insights of 23 years of marriage in addition to caring for 17 foster children, God has also blessed us to be pre-marital and marital counselors. I am also enjoying completing the educational training to become a nationally Certified Biblical Counselor. In addition to counseling women, I stay busy doing volunteer work with the Fire District. For years I have dreamed of a family support program for our Fire District. Over the last many months, great strides have been made in this area and I am excited to be the Program Coordinator for our Family Support Services Program. (Also known as “balance.”) It is an exciting project and I pray it will bless many families and our fire members.
For many, the suffering we have experienced has defined our lives, but we feel there is more to it than that. We have truly blessed lives being loved by Jesus, by each other, by wonderful family, and by faithful friends. We have found that life is a matter of perspective. It is impossible to glean all the blessings in a good day until you have lived through a truly bad day; especially if it was a day you weren’t supposed to survive. Sometimes the best gifts come through the worst of trials, but with Jesus it will be a gift that changes how you live, how you love, how you work, and how you appreciate those in your life. It will change what really matters in your life. We truly believe one can live well and with a joy that surpasses all understanding even in the midst of suffering and trial. Living well is about embracing TODAY with satisfaction (“Set your minds on things above, not on earthly things,” Colossians 3:2), with passion ( the dictionary defines passion as “an intense desire or enthusiasm for something), and with intentionality ( “Whatever you do, work at it with all your heart, as working for the Lord, not for men.” Colossians 3:23). When we are asked what “our story” has taught us, from Steve's progression through leadership in the Fire Service and in the community and all the hard work and purposeful hours behind the scenes, while at the same time we are navigating my complex medical journey; that question has given us a simple answer: We trust God with the details of our lives and the story He is weaving through us. We feel we honor and live out this trust by focusing on TODAY. Live with satisfaction. Live with passion. Live with intentionality.
In the process of transferring all our posts from CarePages to Post Hope, we saw so many wonderful stories of God's provision and the great love and blessings of friends and family. However, we were left with a nagging, piercing question - Is there a reason we write other than just providing facts? Why is it easier to post sometimes than other times? Why do we sometimes stare at the screen for hours before the words will come? After hours of solitude, thought, and prayer; the following answer is where we landed. We were reflecting about how we are remembered when we pass from this earth. Everything related to a person's passing, from programs at the funeral to the grave markers at the cemetery, boldly list the date of birth and the date of physical death. But really, those things do not matter; it is the "dash" between the dates that counts! We, the Brooks Family, want to know that our "dash" counted; that the toil of these unmarked years made a difference for somebody, somewhere and that our time here made a difference for God's kingdom plan - that we were faithful to the life story He gave us to fulfill. We do this blog because it is about the "dash."
Thirty years of an extremely difficult health journey has served as a catalyst for Steve and me to dig deeper into our understanding of the role and value of suffering in this life. So again, why do we write? We write to tell the stories behind the "dash." We write to tell you the stories of Jesus’ amazing love and care through each day of this journey. Our hearts are to share with you the things we have learned on His lap and at His feet. Two specific places in scripture have outlined the purpose of suffering in this life to me: The purpose - To bring God glory through our response of trust as we rely completely on Him as he desires and believing His works are for our good. And then also for the purpose of sharing our joy and comfort with others who are also suffering. “We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves BUT on God.” 2 Corinthians 1: 8-9. Also, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, SO that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1: 3-4
Trial and suffering are not the focus of our attention. Jesus is the focus of our attention and the recipient of our praise. Our suffering is not a gap in God’s love, as if evil crept in while Jesus’ head was turned. Peter says it this way, “Dear friends, do not be surprised or shocked that you are going through testing that is like walking through fire. Be glad for the chance to suffer as Christ suffered. It will prepare you for an even greater joy when Jesus makes his glorious return." (1 Peter 4: 12-13) Suffering does not mean that God’s plan has failed. IT IS THE PLAN! We suffer so that we may know Him more deeply and appreciate His grace more fully. In a culture that lusts after comfort and convenience and sees suffering as horrible interference, we must understand what TRUE COMFORT really is. A great Christian counselor Paul Tripp says so wisely, “Real comfort is more than thinking the right things in times of trouble. It involves having my identity rooted in something deeper than my relationships, possessions, achievements, wealth, health, or my ability to figure it all out. Real comfort is found when I understand that I am held in the hollow of the hand of the One who created and rules all things. The most valuable thing in my life is God’s love, a love that no one can take away. When my identity is rooted in Him, the storms of trouble will not blow me away.”In the book of Romans 5:1-5, Paul summarizes why we can have hope when we suffer. He says, "We also rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope that will never disappoint us."
Hope is not rooted in our health, possessions, or achievements. Your happiness may be rooted in these things, but they are temporary and don't produce a hope that leads to overwhelming joy despite circumstances. Jesus has promised to give us whatever we need to face what comes our way. This fact radically leads us to the most amazing truth that shapes how we view EVERYTHING in this life – This truth means that in the most difficult times of trial and suffering in our lives, nothing truly permanent or valuable is at stake! WOW! What peace this truth brings! We don’t know what tomorrow will bring but we know that we belong to Jesus and that we are eternally loved and cared for by Him! This, my friends, is real hope!
Jesus' instructions for us to lift one another up through encouragement and prayer have never been so tangible to us as experienced through this blog. “You are better having a friend than to be all alone, because then you will get more enjoyment out of what you earn. If you fall, your friend can help you up. But if you fall without having a friend nearby, you are really in trouble.” (Ecclesiastes 4:9-10)
I’ve always vowed to myself to make this blog about honesty, transparency, and authenticity. I’m going to borrow words from a recent blog I posted to share what we are learning as we find ourselves in another health set-back. Does being transparent mean that the tears of frustration and pain always flow in public? No. But it does mean when it is quiet in the darkness of the night, the tears do often flow - a lot of tears. I share this private revelation because I believe there is value in inviting others into our struggles and hurts. Doing real life with each other, we find the heart of one another. Life isn’t the perfect Facebook update or perfect Instagram picture that took you four hours to make look just right. We learn in this type of honesty that we need each other. Let’s fill our lives with those we love and those who need our love.
I believe suffering presents opportunities to serve and celebrate one another. It opens the door for that conversation that might not have happened. It presents the opportunity to just sit and be with that person who is hurting. These intentional friendships encourage the best of who we are. These friends witness the muddy moments of our lives and the woundedness of our souls. They become Jesus in the flesh to us as their companionship reminds us we are not alone. They clothe us with hope and truth when we lose our way in the chaos and disappointment found in suffering. They are Jesus’ arms wrapped around our brokenness. Our circle of family and friends have loved us so well and in them, we see God’s grace, love, peace, and power on display.
Your words have been a healing salve that have eased the emotional and physical anguish that suffering and trial can bring upon the soul in its weakened state of vulnerability. The sacrifice of your time to check in on us, read updates, and then taking further time to send us a message has meant so much to us both and has often been the means Jesus has used to embrace and wrap us up with a garment of hope, faith, and love from Him! With all our heart, we say "thank you and we love you!"
So while there have been most definitely some very difficult and challenging days on this journey, we have been blessed beyond measure by those in our lives. It’s ironic but there is a peculiar, powerful, and poignant joy that seems to come to us, not despite suffering, but through suffering. And those tears . . . They flow again now but are tears of thankfulness.
In His grasp,
Lee and Steve
Medical journey updated 02/19
At 16 years old (1988) I began having debilitating headaches at the base of my skull. As the years progressed without any suitable answers or diagnosis, my young faith was extremely tested and I experienced times of turning my back on Jesus. Over the years the symptoms increased to include difficulties with almost all major organ systems. As I began to live in and out of the hospitals and the ICU, we continued to pray for healing and answers. As I was hovering near complete system failure, we received an answer to our prayers through nothing but miraculous intervention.
After 12 years of suffering and prayers, I was diagnosed with anterior brainstem compression caused by a retroflexed odontoid (2000)(Included now in the revised definition of a Chiari Malformation). I underwent brain surgery in NY that left me with critical complications and on a ventilator to live. I was in a coma but completely awake on the inside and listened in gut-wrenching awareness as my husband and family came in to say their good-byes. It was definitely a moment that changes your life when you hear your own eulogy. Over time, Jesus continued his healing work and I eventually recovered and found health I hadn't known in 12 years.
A month after returning home to TN, I suffered further complications when the cervical vertebrae C1 - C2 subluxed and I had to return to the hospital in NY for further brain/cervical surgery and again experienced critical complications and found myself on a ventilator for the second time. Due to my cervical fusion I had to be placed in a "halo" that screwed into my skull in four places. I had severe pain and placement complications with the halo that took almost a week post-surgery to correct. Much prayer ensued and again Jesus continued his healing work and over time I recovered and returned home with my health intact. After four months in the halo, I had complete cervical fusion. I was symptom free and medicine free for the first time in 12 years - for three months . . .
My symptoms returned. Over the next two years, I slowly decompensated because of settling/kinking of the brainstem causing compression of the vagus nerve and now the posterior side of the brainstem. (Diagnosed then as "functional cranial settling". This was a newly made up diagnostic term as my doctors had not ever seen this condition. This diagnosis is now known as Cranial Cervical Instability or CCI) This settling caused significant cardiac and gastrointestinal failure that threatened my very survival. Again I found myself walking through the valley of the shadow of death (2002). After being emergency airlifted from our local Level 1 Trauma Center in TN to NY and having only hours left to live, my doctors tried one last idea. They screwed extraction tongs to my skull, and with the help of my husband and an engineer friend, devised a pulley system that weights could be attached to that would literally extract my head upward. The cardiac monitor showed a normal rhythm and my constant, reflexive vomiting ceased. (This procedure has since been refined and is now used frequently to diagnose CCI) At this time there was no surgical option to replicate the extraction. It just identified the problem but there was no solution. We prayed fervently for a solution to be found. My doctors decided to try a very uncommon medicine to try to block the signals being sent by the compressed brainstem and vagus nerve. It worked and simulated the effects of the traction device. Jesus again revealed his hand of healing and restored my health. (I have detailed some of this journey in a few updates on this site) I returned home, being maintained on medications, while waiting on a surgical solution to my brainstem compression and CCI.
In the summer of 2003, I suffered a closed-head injury (traumatic brain injury) in an automobile wreck caused by a driver distracted by his cellphone. I incurred permanent brain damage to my frontal lobes and left temporal lobe. The injury required a year and a half of cognitive rehabilitation and I still suffer from short-term memory loss and easy fatiguability.
In March 2007 I began to experience the severe symptoms that I had prior to my previous brain surgeries despite the medications. In addition I developed worsening chronic symptoms involving my muscles. To spare the details, over the next three years, we sought medical experts to evaluate and offer solutions for the cascade of symptoms on both fronts. Finally, in the Fall of 2010 we received answers. The brainstem compression and CCI symptoms were severe due to increasing damage caused by ten years of instability and pressure.of the cervical joints. After numerous tests, it was determined that the ensuing neurological damage was also causing my body not to be able to regulate its automatic functions. I was diagnosed with severe dysautonomia leaving my body struggling to maintain proper cardiac function, blood pressure, digestive processes, and body temperature. Additional testing and evaluations revealed I have Ehlers-Danlos syndrome(EDS) (a connective tissue disorder) and a tethered spinal cord was suspected, both of which could be making the brainstem compression and settling worse. The tethered spinal cord could also be causing my bladder and bowel dysfunction along with my severe pain in both legs. A surgical solution was starting to emerge for brainstem compression caused by cervical instability but it was still in its infant stages and not a viable option for me at the time. My increasingly severe symptoms would have to be managed by a team of specialists, hospitals, and many medications. While disappointed that my three years of appointments, consultations, and tests revealed no solutions to my diagnoses, I was extremely grateful to know causes for the majority of my symptoms.
In early 2010, I contracted an E.coli infection that affected my kidneys and was resistant to antibiotic treatment for 9 months. During the time of my E.coli infection I developed high fevers, night sweats, swollen lymph nodes, and overwhelming fatigue. After 8 months, my E.coli infection was finally arrested after weeks of IV antibiotic treatment, but the high fevers, night sweats, swollen lymph nodes, and fatigue continued.
Finally in January of 2011, blood tests came back that indicated I had the cytomegalovirus (CMV) which is usually harmless in healthy individuals but because of my immune-compromised condition from the E.coli infection and months of aggressive antibiotic therapy, the virus had activated in my system resulting in the symptoms I was experiencing.
2012 was a fairly "calm" season for us. The symptoms continued from my brain stem compression, CCI and EDS but we were blessed with an amazing primary care doctor who was ready to roll up her sleeves and get to work collaborating with my numerous specialists in order to make me more comfortable while keeping me alive.
2013 brought many hospitalizations as my symptoms began to rapidly deteriorate and pharmacological management was frequently failing. By late fall I was almost exclusively confined to bed at home when not in the hospital. After much prayer and a lot of communication among the medical team, it was decided that the newest surgical solution for brainstem compression caused by CCI and EDS was now a viable option for me. (a cranio-cervical fusion with an innovative new design less than a year old) In December 2013 I had the cutting edge fusion in NY. Further clinical evaluation revealed I was definitely suffering from a tethered spinal cord so five days after fusion surgery, I had surgery to de-tether my spinal cord. The results from both surgeries have been the long-awaited and prayed for healing. All organ systems are functioning normally and related symptoms have all resolved. I am medicine free for the first time in 26 years. See updates for specific details. I will always have EDS, and the lingering effects of a traumatic brain injury but these are much more manageable without all of the other complications.
Fall of 2017, almost 4 years since my radical brain/cervical surgery/fusion and the de-tethering of my spinal cord, I have a myriad of symptoms developing from my Ehlers-Danlos Syndrome. We thought my EDS was confined to my cranial-cervical area. I began to experience progressive laxity of my joints, particularly my fingers, shoulders, and ankles. I developed severe gastrointestinal complications that after extensive testing, have been linked to complications from my EDS.
2018 was a very busy year for us with my health journey. Due to frequent dislocations, I underwent 2 shoulder reconstructions. In April/May, we traveled to the Mayo Clinic in Phoenix for a 6-week evaluation of my EDS and related complications. Mayo located the mutated gene responsible for my EDS and also uncovered the fact that EDS had led to me having an aortic aneurysm. For more details of the Mayo experience see the blog posts for those dates. We followed up in December at Mayo and had a great experience, especially with the Pain Clinic. We started a multi-modal approach using no opiates. I was pain free in three days! We are thrilled.
February 2019 has started a little rough. I collapsed at an event and needed to be intubated and in ICU for pneumonia. I collapsed a week later at home, again with respiratory problems, but had several seizures and heart rhythm and rate problems. I was hospitalized for 5 days. We are currently coordinating area specialists with the Mayo team and my neurosurgery team in New York. We return to Mayo in May.
Stay tuned . . .