With the diagnosis came peace, and a resolve to make the most of it.
Two weeks and three days. That's how long we agonized, awaiting test results from the 12 tubes of blood LabCorp had taken. We had no idea what to think or do while we waited.
I was aware that my life could change dramatically, and found myself in a mental quandary every time I considered whether or not I was ready to face that change.
I'd watched my sister go through the treatment, and even though she was walking again, she was still extremely ill. She had been forced to drop school and work and lived day-to-day lying on the couch or in bed with periodic visits from a nurse to examine and clean her PICC line (the IV tube inserted into her left arm above the elbow).
I couldn't imagine such a miserable existence. I didn't understand how she'd gotten through her two weeks of "herxheimer reaction," when her body finally began producing its own antibodies and the disease went wild and mass-multiplied, leaving her exhausted — with significant weight loss from constant vomiting and excruciating nerve and muscle pain that came repeatedly and without warning.
I saw no grace for me to walk through that kind of suffering, and even envisioned myself coming out on the other side of a diagnosis and course of treatment a bitter, disillusioned, introspective, self-focused God- hater. How could someone go through so much pain, with so many unknowns and constant alterations in type and intensity of treatment, and have so much peace?
And yet the appeal of a diagnosis kept tugging at my mind: to know what was wrong with me; to really know ... that would be such a relief. I wanted to be normal, even if it was a "weird normal." If I at least knew where the fibromyalgia, gluten intolerance, headaches, extreme fatigue, neuropathy, and memory fog were coming from ... if there were at least hope for treatment to work.... Wasn't that better than living with my symptoms as they worsened?
But I remained unsure.
Two weeks and three days after giving blood, Lyme Disease had been confirmed — and apparently, I'd had it for several years. Toxic levels of vitamin D (a side effect of Lyme which doctors still cannot explain) and the presence of several other "co-infections" proved to my doctor that I was dealing with late-stage Lyme disease, and that it was rapidly breaking down my body's defenses.
When I got the news, I didn't know whether to cry from joy or grief; I think I did a bit of both. I saw the long road ahead of me, and knew it wouldn't be easy. But there was a peace in knowing. There was somewhere to go, something to do. No more waiting and confusion over the source of my symptoms.
But the more I learned about Lyme (and the more I continue to learn, six months down the road), the more confused I became. The controversy over treatment type, duration, and intensity is rampant, and also varies from patient-to-patient. Most insurance companies won't cover long-term antibiotic treatment for Lyme disease, and many doctors even question the existence of late-stage or "chronic" Lyme. In the early stages of my sisters' diagnosis, various doctors had even told her that her health issues were "psychosomatic," induced by mental confusion, fear, a desire for attention, and so on.
Post-diagnosis, Lyme treatment only became more confusing.
Over the past six months, the questions have become less and less Where do we go? What do we do? How much do we take? When should we switch to a new antibiotic? How can we be sure this is working?
Over the past six months, these questions have increasingly been overwhelmed by those which deal with the bigger picture: who God is, what He is doing, and how to glorify and enjoy Him in the midst of the windy, bumpy, muddy road that is Lyme treatment.
Over the past six months, I can honestly say that despite my increasing inability to predict the day-to-day ability to function, and despite the uncertainty, I've become more and more certain and steadfast in my faith, passionately desirous of knowing my Savior and His Word, increasingly confident in His will for me, and joyfully patient in surrendering my life plans, goals and dreams to Him.
Chronic disease leaves a lot of room for waiting. I waited for a diagnosis. I wait to see if a drug will work, or for my doctor to decide what to do next. I wait for the pain, or for the next bout of symptoms, or for one round of antibiotics to stop working. I wait for a cessation of symptoms and for healing — be it in here, or in Heaven. There is always something to wait for, these days.
I remember something that Carolyn Mahaney, author of Biblical Femininity, Shopping for Time and Girl Talk, said: "Waiting is fundamentally about what I'll become as I wait." I also think of something Elizabeth Prentiss said, which has particularly helped me in this season:
God never places us in any position in which we can not grow. We may fancy that he does. We may fear we are so impeded by fretting, petty cares that we are gaining nothing; but when we are not sending any branches upward, we may be sending roots downward.
Both of these thoughts have been essential in combating the lies and fears that come with the ups and downs of treatment. I know that this season of my life is to be used for God's glory, and not to be seen as an interruption to His plan, and that I have been placed here by his own hand to "send roots downward." Charles Spurgeon said it this way:
Unerring wisdom ordained your lot, and selected for you the safest and best condition ... remember this: had any other condition been better for you than the one in which you are, Divine Love would have put you there.
I Will Not Waste My Lyme
Information about Lyme is key. Treatment is essential, doctors are a gift from God, medicine is a blessing.
But for me, as a Christian, joy and confidence rooted in these things is continuously proven empty and worthless when tested. So, to take a leaf out of Piper's "Don't Waste Your Cancer" article, I'd like to give a taste of the lessons I'm learning as I "send roots downward" and base my joy and confidence in God alone.
I waste my Lyme if I do not believe it is designed for me by God.
It is useless to say that God only uses my Lyme, but did not design it. To be honest, not only did God create the very tick that transmitted the disease, but He also allowed my body to be susceptible to its co-infections, and put that insect and I in a certain place at a certain time. God does not operate on our timetable and is not limited by our finite wisdom. He designed the road I am on, and sees it not only in its complexity, but also in its entirety. John Piper speaks of this:
Since he is infinitely wise, it is right to call this purpose a design. Satan is real and causes many pleasures and pains. But he is not ultimate. So when he strikes Job with boils (Job 2:7), Job attributes it ultimately to God (2:10) and the inspired writer agrees: "They ... comforted him for all the evil that the Lord had brought upon him" (Job 42:11). If you don't believe your [Lyme] is designed for you by God, you will waste it.
I waste my Lyme if I believe it is a curse and not a gift.
"There is therefore now no condemnation for those who are in Christ Jesus" (Romans 8:1). "Christ redeemed us from the curse of the law by becoming a curse for us" (Galatians 3:13). "There is no enchantment against Jacob, no divination against Israel" (Numbers 23:23). "The Lord God is a sun and shield; the Lord bestows favor and honor. No good thing does He withhold from those who walk uprightly" (Psalm 84:11).
Piper uses all of these verses to assure us that if we know God, we know that He is out for our good and His glory. Nothing falls outside of this plan. As hard as it may be to see it at times, if I find my confidence in the truth that my greatest good is knowing and savoring the Savior, I won't waste time questioning His goodness. Instead, I will use this opportunity to press into Him.
I waste my Lyme if I seek comfort from the odds rather than from God.
God did not design my Lyme to direct me back to human wisdom and statistics. When I believe that joy will be found there, I quickly find myself struggling with depression, fear and confusion. Particularly in the controversial world of Lyme disease and treatment, no confidence can be found in relying on the odds for beating it. Although Lyme hasn't been proven to result in death, the "successful" treatment of those with late-stage Lyme hasn't currently been recorded/proven.
As Piper points out, "God's design is clear from 2 Corinthians 1:9, 'We felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.'" God's aim in the trials He brings to us is to make us rely more fully and trust more wholly in Him, and not on our shaky human foundations of reason, science, etc.
I waste my Lyme if I refuse to think about the possibility of unsuccessful treatment.
Piper reminds us that we will all die, if Jesus does not come.
Not to think about what it will be like to leave this life and meet God is folly. Ecclesiastes 7:2 says, "It is better to go to the house of mourning [a funeral] than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart." How can you lay it to heart if you won't think about it?
Although it is possible to dwell too much on pessimistic predictions for the future, it is equally possible to ignore the possibility of suffering and live too much in the moment. I know that when I have been doing better, my pastor has encouraged me to use that period of time to cultivate a solid foundation in the Word and knowing God's character so that I can be prepared for what may come. We are told to "number our days aright": Therefore, it would be ignorant and foolish to not consider the future and, in considering my predictable need for God in trial, to take hold of passionately pursuing Him in the present.
I waste my Lyme if I think that "beating" it means being healed rather than cherishing Christ.
God's design in allowing me to contract Lyme is, as previously mentioned, to deepen my love for Him. Satan's desire is to manipulate and distort God's plan is worked out in planting doubts in my mind and causing me to question God in trial, destroying my love for Christ. "[Satan] ... wins if you fail to cherish Christ." And although doctors don't presume that patients will die of Lyme disease, the daily dying to self and struggles through pain and sickness demand the same confidence as Paul speaks of in Philippians 3:8 and 1:21 when he says, "I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord" and "to live is Christ, and to die is gain."
I waste my Lyme if I spend too much time reading about it and not enough time reading about God.
I've been very grateful for my mom's extensive pursuit of knowledge and involvement in my treatment (my sisters' as well). She's a nurse, so she handles the medical information with much greater wisdom than we could. But just as Piper mentions in his cancer article, if the majority of our time is spent learning more about Lyme and its treatment and less and less about God, this is really "symptomatic of unbelief."
My sister used that difficult time during her herxheimer reaction to memorize the entire book of 1 Peter. She knew and acted upon the reality that trial "is meant to waken us to the reality of God." "Let us know; let us press on to know the Lord" (Hosea 6:3); "The people who know their God shall stand firm and take action" (Daniel 11:32).
I waste my Lyme if I let it drive me into solitude instead of deepen my relationships. Again, Piper:
When Epaphroditus brought the gifts to Paul sent by the Philippian church he became ill and almost died. Paul tells the Philippians, "He has been longing for you all and has been distressed because you heard that he was ill" (Philippians 2:26-27). What an amazing response! It does not say they were distressed that he was ill, but that he was distressed because they heard he was ill. That is the kind of heart God is aiming to create [in you]: a deeply affectionate, caring heart for people. Don't waste your [Lyme] by retreating into yourself.
I can speak for the truth of this through my own situation: In my vulnerability and uncertainty and constant need for care, practically, emotionally, and spiritually — God has drawn me closer to my family and friends and counselors, something I had been praying for only a year ago. God works in mysterious ways!
I waste my Lyme if I grieve and complain "like those who have no hope."
Grief and sorrow are not illegitimate feelings. It's how we turn back those feelings into living for and praising God that determines whether our grief is God-glorifying. Paul used this phrase in relation to those whose loved ones had died:
We do not want you to be uninformed, brothers, about those who are asleep, that you may not grieve as others do who have no hope (1 Thessalonians 4:13).
As a believer, my grief is real, but it is different — it is permeated with hope. "We would rather be away from the body and at home with the Lord" (2 Corinthians 5:8). If I don't use pain and confusion and sorrow to turn myself back to God and let me go deeper with Him in His word and in prayer, I will waste my Lyme.
I waste my Lyme if I treat sin as casually as before.
"Sin is my enemy; thou art my greatest good," states a puritan prayer from Valley of Vision. Spurgeon says that
the trials which come from God are sent to prove and strengthen our graces, and so at once to illustrate the power of divine grace, to to test the genuineness of our virtues, and to add to their energy. Our Lord in his infinite wisdom and superabundant love, sets so high a value upon his people's faith that he will not screen them from those trials by which faith is strengthened.
Piper asks the telling question: "Are your besetting sins as attractive as they were before you had cancer?" He goes on:
If so you are wasting your [Lyme]. [It] is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination — all these are the adversaries ... Don't just think of battling against [your disease]. Also think of battling with it.
Lyme disease is not my greatest enemy. Sin is. Healing is not my greatest good. God is. I shouldn't waste the opportunity to seek out and destroy the sin that will be revealed in my heart through my trials.
Let the presence of eternity make the sins of time look as futile as they really are. "What does it profit a man if he gains the whole world and loses or forfeits himself?" (Luke 9:25).
I waste my Lyme if I fail to use it as a means of witness to the truth and glory of Christ.
There is nothing more confusing to a world that seeks wholeheartedly after comfort and health and possessions as the keys to happiness than a suffering, joyful Christian. God did not place me in this position without providing divine opportunities to display the light of the Gospel to that watching world.
Jesus said, "They will lay their hands on you and persecute you, delivering you up to the synagogues and prisons, and you will be brought before kings and governors for my name's sake. This will be your opportunity to bear witness" (Luke 21:12 -13). Piper points out that just as this was with persecution, so it is with disease. I can assume that on this journey there will be opportunities to be a witness for Christ.
Finally, remembering and dwelling on verses like Hebrews 6:18-19, 12:1-3, and Romans 5:3 allows me to say with A.W. Tozer,
The man who has God for his treasure has all things in One. Many ordinary treasures may be denied him, or if he is allowed to have them, the enjoyment of them will be so tempered that they will never be necessary to his happiness. Or if he must see them go, one after one, he will scarcely feel a sense of loss, for having the Source of all things he has in One all satisfaction, all pleasure, all delight. Whatever he may lose he has actually lost nothing, for he now has it all in One, and he has it purely, legitimately and forever.
By God's mercy, through the many ups and downs of treatment, my sister and I have both finally come to a moderately stable place. Our energy is back, neuropathy has lessened, headaches are few and far between, memory is more reliable, and we have successfully altered our lifestyles to accommodate for food allergies and fibromyalgia.
But before we got to this place, God had already shown Himself to both of us in incredible ways. Through His work, we had come to the place where healing was not the key to finding joy. We both finally took hold of the "peace that passes understanding" — peace that is only found in Him.
Is God enough for me? Yes, He is more than enough for me. In my uncertainty, He is the One who does not change. In my limited knowledge, He is all-wise. In my pain, He is comfort. In my sorrow and grief, He is my joy and fortress. God can become these things for me in increasing measure, if I do not waste my Lyme.
Copyright 2008 Jen Marie. All rights reserved.