Lyme Disease is a thief.
My life spent as a wife, mother, friend and business owner has morphed into an empty, barren oasis of medication, pain, financial ruin and brain fog. I don’t recognize myself anymore and I don’t know where to find myself or how to find the path to my old life.
The average cost of a strand of 100 mini Christmas lights is around $7. (Amazon.com)
The average out-of-pocket cost for a patient receiving treatment for a single case of Chronic Lyme Disease is $12,000. (spirochicks.com) That’s per year. Treatment can last for two years, and often times, longer.
Christmas lights are disposable. Every year, we haul out the lights packed haphazardly in boxes from the year earlier, test each strand, and typically find about 20% of the strands are operable. Our solution? We toss the 80% into the garbage and run to the store to buy replacement sets. If only such a thing were possible in the life of a Lyme patient~the ability to dispose of the infection and quickly replace aching joints, chronic pain, malfunctioning brains, faulty memory and lost jobs~all ravaged by something called spirochetes.
Lyme disease. We’ve all heard of it. It’s been 41 years since Lyme Disease was first diagnosed, yet the ignorance surrounding the disease is astounding. Discouraging. Absolutely shameful.
People are dying. The reality facing people suffering from Lyme is this: The ability to function properly…to have individual gifts shine like beautiful, bright strands of Christmas lights, is gone…perhaps forever. The insidious combination of living with a body and brain wracked with disease and the disgraceful, shocking lack of understanding and unwillingness to acknowledge the chronicity of the illness by the medical community is ultimately a death sentence. If Lyme and it’s co-infections don’t lead to death, one’s emotional fragility and mental health are very likely to lead to a tragic, self-inflicted end.
It is impossible to return to the person you were before a Lyme diagnosis. That path is gone~destroyed by the lack of acknowledgement, support, and cohesive treatment protocols within the medical community. Those unacceptable realities are fed to family members, friends and the public, and only serve to isolate Lyme patients. Looking into the eyes of family members, friends, acquaintances is a painful thing. In their eyes I see it~doubt, judgment and a fear that fuels an unwillingness to be educated and jump into the trench with me. It is impossible to grasp even a shred of hope that we might return to who we thought we were given the status of a Chronic Lyme Disease diagnosis in the current medically regulated climate in this country. Is this the fault of loved ones? Absolutely not. It is a direct result of a fraudulent, corrupt system that is itself in denial.
Finding hope among the Lyme community also proves to be difficult. Are there hopeful people who have found remission after years of fighting? Absolutely. But Lyme disease is not like Cancer. Finding support from others in a country where our own government refuses to acknowledge the epidemic of Lyme Disease, especially the chronic deadly stages, is incredibly difficult. Many who have found a measure of healing find themselves drowning in a financial debt that will take the rest of their lives to recover from. Others are lost, without an identity to cling to other than the disease identity itself. Some simply want to forget this chapter of their lives and move on.
Once in a while, someone slightly farther along in their treatment protocol will offer grace and a healthy dose of loving confrontation. If you are lucky enough to experience that, be humbled and receptive.
For a few, there remains an undeniable, unexplainable remnant of hope that overshadows the frustrations and despair. Life becomes less about surviving disease and more about seeking the source of this mystifying hope.
In spite of illness, I still can see pure, untainted beauty, but I cannot enter it. I cannot immerse myself in it. I cannot fully experience or understand the wonder and majesty of creation. This is true now, and true before I got sick. Seeing beauty in the world and experiencing it with my senses does not make me pure and untainted. Lyme disease has not altered the reality that I am not home. It has not taken away the desire within me that can only be attributed to Jesus Christ and his constant intervention and pull on my soul. The longing that has existed within me since the beginning of my relationship with Jesus has not been destroyed, lost or stolen. THAT remains a constant in my life no matter the state of my health, of the world or of my place in it. God is bigger than any disease. The beauty that I see in the world is only a hint of what we are promised when we finally reach our home.
It’s incredibly easy to lose sight of the future when faced with frustrating holiday tree mishaps, anger at worldly systems, debt, poor health and personal rejection. It is at those very moments when I pray I can recall the and powerful, wise words of C.S. Lewis:
“I must keep alive in myself the desire for my true country, which I shall not find until after death; I must never let it get snowed under or turned aside; I must make it the main object of life to press on to the other country and to help others do the same.”
The only possible attitude that makes sense for me to cultivate is one of humility. I have no choice but to reject all of my complaints and grumblings about the status of my life here in this place when I study the powerful words in the 12th chapter of Hebrews:
“My son, when the Lord corrects you, do not treat it lightly, but do not get discouraged when he reprimands you. For the Lord trains the ones that He loves and He punishes all those that he acknowledges as sons.”
I am trained by my Father. The God of the universe apparently thinks I’m worth molding. It is a perfect love that cannot be experienced in any other relationship on Earth. I am a daughter of the King of Creation. Asking God why he is using specific methods in my life as tools of refinement is not my place. Certainly, He has already answered my ‘whys’. Nothing about His intervention in my life is pleasant and in fact, it is often painful. I must be able to stand up among the chaos and pain and injustice and cling to the truth that I will be strong again, not because of a single ounce of effort on my part, but because the brokenness and continued testing that my Father allows in my life will result in a radical heart change…a continuation of becoming a new creation…the submission and bending of my will to the will of Christ. The strength to stand among the devastation of life comes from God. I do not possess such strength on my own. My worldly self is dying, literally, yet I continue to live in Him.
My complaints, grumbling and self-pity are shameful when examined in the light of the love of my God. Repentance is required, not because I live under the legalistic rules of religion, but because my heart is overwhelmed with an intense love for Him. He is a God that refuses to let go of me in spite of the audacity and insubordination I personify on a daily basis. My sole wish is to know Him more, to live with Him, to love him with complete abandon. His mercy and grace continue to testify to His character in that he allows me to choose between worldly submission, or submission to a God that desires to be Lord of my life.
Because my flesh and my spirit continue to war with each other, I sometime wish for a solution as simply as throwing away the broken strands of lights and replacing them with something shiny and new from the world. However, it is impossible to ignore the conviction that comes from the Holy Spirit residing in me.
Easy, painless worldly solutions will never satisfy my longing to be home eternally, immersing myself in the holiness of my Lord and God who continues to love me in spite of my complete and utter brokenness.
Chronic Lyme disease has devastated my entire life. Funny how spending time communicating with God through His Word reframes the devastation into a gift. The disease has a purpose. The purpose is my refinement. The purpose is to move me father along the narrow path leading me home where, unlike the temperamental strands of lights that adorn our Christmas trees each December, there exists a perfect, brilliant light that never burns out.
I hope and pray for the day when I can go home and experience the fullness of His light.