I have Lyme. I’d like to not have it anymore. I also just want cake.
Immediate confession: This title is not original. I stole it. Well, let’s say I borrowed it, nay, I am quoting it. It comes from one of my absolute favorite addresses given by a man named Neal A. Maxwell who served as one of the 12 apostles in my church for 23 years until his death in 2004. I adore his writing. I envy his prose. He spoke much about trials in life. He spoke much about suffering and enduring things that don’t seem fair. He had license to do so, suffering numerous of his own tough lots including enduring the last eight years of his life with Leukemia, ultimately taking this brilliant man from our world. I’ve been thinking quite a bit recently of his words which I’ve titled this post with.
You see, in a recent post I’d exclaimed that I had been zooming towards wellness super fast these days. My treatment cycles were becoming easy. I had even been working part time from home since August – a major accomplishment for me. And then my doctor added back in a drug to my protocol that made everything come to a screeching halt. I’m getting much more sick again during my treatment. Symptoms have returned that I haven’t seen in months. MONTHS! I just wasn’t able to work like I thought I had (because brain), and so along with the wind in my sails, I had to walk away from my job. And I know that is the way of Lyme. I know treatment does this; I know recovery is not a linear process. But guys, I’m human. This disappointed the Tara. I want to be back to normal so badly. So what now, if not now? I’m experiencing my hundreth-something “but if not”.
The origins of “but if not” give us (or me at least) such valiant accounts in history with which to make my own frames for the pictures of my life. Let us listen from Maxwell:
“Now we’ve got some marvelous models on enduring uncertainty and trusting God. First there were the three young men Shadrach, Meshach and Abednego, whose response to a persecuting king [who demanded they worship his false idols] was, as they were about to thrown into a fiery furnace heated seven times its usual capacity, “If it be so, king, our God whom we serve is able to deliver us from the burning fiery furnace,” and then the three words, “but if not, be known unto thee O king, that we will not serve thy Gods, nor worship the golden image which thou hast set up.” Dan. 3:17.
How many of us sit in a fiery furnace of affliction but yet hold steadfast? How many of us are valiant enough to hold hope for relief, but can assert that if not today, it matter not. We will still have faith. Back to Maxwell.
“I pause here to interpolate this thought. On the beaches of Dunkirk, when 350,000 British soldiers were threatened by annihilation, there were critical hours, and the scriptural literacy of the least educated class in England was such that in that setting, a signal was sent from the beaches of Dunkirk to British military headquarters, a three word signal, “but if not.” quoting from Daniel [above]. They didn’t know if they’d be rescued from the beaches of Dunkirk. But it didn’t matter, they would serve their king. And there will be times in each of our lives when our faith must not be conditional upon his rescuing us. Because in fact, he may not, as we would choose to be rescued…”
How many of us stand on our own beaches of Dunkirk facing a force powerful enough to annihilate something we hold dear? I know many of us pray for rescue. But do we include the ultimate willingness to sacrifice whatever is asked of us as we include the words “but if not”, we will still believe?
Anyone reading this who suffers from a chronic illness knows that one of the hardest parts is that unknown timeline… that unknown future. When will I be well? Will I be well? It can be a symptom unto itself – open-ended illness. When it comes to pain and suffering, it’s so darn hard to be patient. It’s really difficult to be in the midst of it. This is common to all of humanity, even those of us who seem to have a really great handle on the concepts of why we suffer. Shakespeare wrote, “for there never was yet a philosopher who could endure a toothache patiently.” (Much Ado About Nothing). A frenchman named Laroche Luquote has said, “we all have strength enough to endure the misfortunes of others” (Selected Maxims and Reflections).
I’m about to propose something that really is quite logical, but I feel like it is a concept lost in the Lyme community at times. Forgive me, I can be a button-pusher. But our suffering is no more “special” than many others experienced by humanity. It’s different, yes. But we are not entitled to relief any more than others in long-term, painful, hopes-and-dreams-delaying situations. Maybe I’m wrong, and maybe I’ll get some nasty messages for this, but it’s been my observation that at times the Lyme community considers itself a special kind of sufferer, a unique, somehow greater ill that trumps many others. We tout at times we wished we had cancer. We grip firmly the flag labeled “dismissed” and wave it vindictively while proclaiming the injustices put upon us by organizations such as the CDC and the IDSA to all who will listen. We bemoan physicians who do not take us seriously and we bemoan physicians who do not make us well. I feel like some of us hold a lot of anger. There’s too much anger in the Lyme community. Guys, it’s not making you well. Yes, the current political climate for Lyme disease is not fair. Yes, we are dismissed by many. Yes, many of our doctors fail to give us our health back. I’m not denying that. We do suffer. Sometimes we suffer further at the hands of others. But you aren’t the first group of people to do so. Yes, I’m grouping your suffering with the rest thrown in the collective hat labeled “mortal tribulations” that everyone draws pieces of paper from. But (and the purpose of this whole post is) you have the choice to decide if you want to suffer more than is necessary. These kinds of mental anguishes (resentment, sense of entitlement to wellness, anger, vindictive thoughts, and even just run-of-the-mill hopelessness) will darken your world, will snuff your spirit, will allow bitterness to fester, and may very well even prevent physical healing because the mind and body are so indistinguishably intertwined. What is needed, I feel, is a paradigm shift.
We all hope for a brilliant physician, but if not? We all hope for a speedy recovery, but if not? We all hope for the climate to swirl in clouds of change and bring with it mainstream credibility for the disease, but if not? Therefore, to overcome these hurdles soul intact, endurance must become something more than existing until. And this is where your power of choice comes in. This is where you have the power, as a free agent unto yourself, to choose how you will respond to your circumstances. This is where endurance doesn’t mean existing until, but instead has the potential to become something graceful, to become a power to change you for good, to grow you. Your every single suffering moment can make you more than you are. It’s not meant to be a pleasant experience, as Yeats states, “that toil of growing up… the unfinished man, with all of his pain.” I like to think he wasn’t referring to the awkwardness of youth but instead the difficult lessons of becoming the finished product that is yourself.
But where to start? Where to go from here? Love. And while “love” doesn’t seem to have anything to do with overcoming this horrible phase in your life (and I know how horrible a phase it can be), love is the foundation of getting through it. To quote Neal A. Maxwell directly, “…our capacity to love, and our capacity to endure well are inextricably bound together.” To put it bluntly, Lyme is a whole lot easier to endure when you don’t have hate in your heart. Time flies when you focus on others instead of yourself. Yet we are told to hate. To hate the disease; in fact, we need to hate it in order to fight it. We’re angry our lives have been so disrupted by this disease that our natural response is to hate it. We’re told to hate the medical establishment and consider ourselves superior to it. We cannot forgive them. We hate those who don’t believe us. We may not even be able to see it, but deep down resentment lives and we let it.
I propose that for starters, we don’t. To keep quoting the brilliant Maxwell:
“The quality about which we’re speaking therefore is graceful endurance and it includes becoming and growing. It includes, but is not limited to, hanging on for one moment more. It is as has been observed, a circumstance in which “all virtues at the testing point take the form of courage.” (C.S. Lewis, The Screwtape Letters). And then after you and I have passed breaking points without breaking, our virtues take the form of endurance.
Let this sink in. How many of us think we are fighters, tough as nails, Lyme warriors? And sure, many moments we are. I don’t know… call me crazy, but I prefer someone see me as something softer, something a little smoother around the edges. You see, I take medications that do the fighting for me. My job is enduring. Enduring and becoming and growing. My job is acquiring virtues. Virtues like love. Virtues like patience, faith, and peace towards all men. And I want to do that gracefully… passing the breaking points without breaking. Having the courage to practice these virtues at each of their testing points. What is love if not presented with an opportunity to hate? What is patience if you are wanting for nothing? I’ll tell you what I wanted. I wanted to keep zooming to wellness this fall, I really did. But if not…
For those who believe in God, “… a true faith in God includes not only faith in him, but in his timing… one of the things that is most difficult for us to have faith in.” (Neal A. Maxwell). We are a self-centered bunch, us humans. We want things to be fair and just and we want to experience life essentially in comfy sweats all snuggled in some memory foam with an endless bucket of Reece’s peanut butter cups within reach. Think of the person that would (wouldn’t) grow? There is a saying that, by now, we’ve all come to roll our eyes at (God will never give you more than you can handle yada yah). Because you and I both know that frequently, there are many moments (in Lyme and life) that we are given more than we can handle. And that’s true. God doesn’t give us only that which we can handle. Nowhere does it say that. If every trial to come my way was something I could shoulder myself, again, what kind of person would that grow? God is in the business of making you more like Himself. I firmly believe that. He is about bringing out your potential. He will give you more than you can handle. He will. To quote Maxwell again (get used to it): “…He will give us all that we can at times. And this opposition, it’s built right into the structure of life [and] includes what I call the stern and demanding isometrics of being pitted against our old selves.” I love that. Pitting the potential you against the current you. What perfect imagery. What an inspiring thought. But yet we say these trite phrases like “God will never give us more than we can handle” to somehow console ourselves while we drown in the weight of our burdens. It’s not conducive to growth. So then, what DO you do when you can’t DO it anymore? It’s all those “Come unto me” scriptures. And it works.
How? Like, how do you do this? God is not a mortal person I can literally hand these intangible things like feelings and pains over to and be all like “hey thanks, I’m gonna go play now”. For me, it’s just been trust. It’s been faith. It’s been accepting the “but if nots”. It’s telling Him that “okay, I’m sick. I’m in the fiery furnace. I’m on the beaches of Dunkirk with an unknown rescue time. I understand that this is my lot for right now. I understand it isn’t ideal and I don’t want it. But, I know I’m not here to do whatever I want all the time. I know I’m supposed to learn things the hard way and to have my soul stretched. I have faith, that no matter what happens or becomes of my circumstances, that if I just keep trusting you, I will be better for it. And, AND, in the meantime, I will make a conscious effort to look for ways in which I am blessed in spite of it. I won’t focus so much on it. I will try to do as you would do. I will turn my focus outward instead of inward on my suffering. And I will ask for your help every day. I can walk out of this furnace without burns. Dunkirk doesn’t have to ruin me.” If done sincerely, the rest just happens guys. It just happens. And I’m not implying anywhere that I believe God gave me Lyme disease. But He can simply help me turn it into a positive.
“Enduring… quite naturally is equated in some respects with holding on or holding fast. And it certainly includes that capacity… to endure for one moment more. Again however, graceful endurance is not just surviving. But surviving as Job did with his integrity intact. This capacity to endure well permits us when required, as the Lord said “be still and know that I am God” … There are moments in our lives when we must be still and know that He is God. And in this silence there can be certitude.” (Neal A. Maxwell) The best moments for this? Your breaking points.
First faith, then the miracle. For me, the miracle hasn’t been the elimination of my Lyme or my suffering, at least not yet. But it has been the change I’ve seen in myself. It’s the friendships and love and support I’ve gained. So many gains that in retrospect, outweigh my temporary losses. It’s been moments I’ve been blessed with that have provided me with that certitude of God’s presence amidst my trials. Remember love? It works. Forgetting about myself and loving others as best as I was able to in my physical state at the time has been the catalyst for so much of the changes I’ve seen happen in myself. It’s the not-so-secret ingredient. And aside from personal growth, serving others brings joy. Perhaps that’s the purpose all along. I think it’s time for more Maxwell. “Our afflictions… often will not be extinguished, they will be dwarfed and swallowed up in the joy [God gives]. That’s how we overcome, most of the time. It’s not their elimination, but the placing of them in that larger context.” When the world, in my heart, doesn’t revolve around me and my Lyme, then me and my Lyme seem much smaller. It’s overcoming my Lyme, before actually overcoming my Lyme. And forgive me for becoming religious today, I don’t normally speak this much about my faith. But for me, it is so intertwined with how I’ve coped with my disease that there was no way around it. I’m not sorry for my beliefs. I know what I know. Moving on.
Life, and Lyme disease, is not lineal. It is experiential. We have our time frames and our calendars and we want to measure and quantify but I’ve tried. Lyme won’t let you. And neither will life, really. Phillip James Bailey said it best when he said “we live in deeds, not years, in thoughts, not breaths, in feelings, not figures on a dial and we really should count times, by heart throbs.” I look back over the course of my grueling experience with Lyme and its treatment, and it is true. I simply see moments of soul stretching, of hundreds of over-comings, break downs and lots of picking myself back up. I have meticulously tracked symptoms and physical progress on calendars and I’ve kept them all. But flipping through them they mean nothing to me. They don’t reveal anything that matters. I’ve gotten better, that’s obvious. There are fewer symptoms on recent calendar months than on earlier ones. But those intangible moments I grew, I fostered love, I forgave ignorant physicians, I placed blame for my suffering on no one, I allowed my disease to exist for as long as it will, or the moments I shifted my focus from fighting my illness to fighting the ugly in myself… my calendars don’t show that, can’t show that. And that’s what really matters to me in my experience – everything I did when faced with all of the “but if nots”. You see, when we have great expectations, when we tell ourselves things are going to go a certain way for us, we must inevitably endure the difference between what we wanted to be and what we are, and then to try to make of that a more useful discontent rather than a corrosive affliction to the self. In other words, more often than not, things don’t go your way or don’t happen in the time frame you want them to. What, or rather, who, are you going to be in the meantime? Will you allow the disappointment to school you in the lessons of gracefully enduring, or will you grow bitter and whiny and kick against no one but yourself? William Makepeace Thackeray spoke of these things with brilliant insight when he said,
“…to endure is greater than to dare; to tire out hostile fortune; to be daunted by no difficulty; to keep heart when all have lost it; to go through intrigue spotless; to forego even ambition when the end is gained – who can say this is not greatness? …Though you and I can endure direct assaults, can we endure being abused? Can we endure being underwhelmed? Can we endure being unused and unsung? Unresponded to?”
I think that is befitting the Lyme community perfectly. We’re not simply to exist in pain, injustice, and suffering, to endure living unused and unsung to the end. We’re to become something during. Besides, if we think we’re fighting for fairness, try as we may, the record is never set fully straight here anyway.
I couldn’t write about endurance in the context of Lyme without paying special attention to the monotony. The kind of monotony that happens when all of the things you could have filled your life with stay far from your grasp. And of course, the drudgery of an open-ended treatment that brings with it an open-ended illness. Oh guess who has a perfect thing to say about this? Maxwell.
“This enduring about which we’re speaking also included the in-between periods of life [the periods we are forced to be seemingly useless for us Lymies]. Winston Churchill called them his “wilderness years.” He was out of the circles of power; his talents went largely unused. Furthermore his accurate and warning voice was raised but went unheeded. He saw what was coming, but his influence was waning. His political career was assumed to be over.
Down underneath the streets of London, they have preserved the war cabinet rooms at which Churchill presided. A dingy underground tiny room, not well lit, has a very crude square table set with the agendum placed at each place as it was in October of 1940. The coalition cabinet met there, that’s where the lamp of liberty burned. Down the hall, it’s filled with pipes… his little bedroom that Churchill slept in. On the wall is a little poster. I don’t know who put the quote up, but it wouldn’t surprise me if it had been Winston. The quote says, “There is no depression in this house. We do not speak of defeat here. It is not a possibility.” It is that kind of pluck and courage that must enable the disciple, each of us, to carry on. In these in-between periods as well as the periods of great personal drama.”
Let us be Churchills.
Remember how in the beginning I said that bit about us Lyme patients not really being as special as we think we are? Great personal trials, unfathomable sufferings and injustices have happened and do happen to the greatest as well as the least of us. It would serve us well to drop our exclusive fences of tribulation and liken ourselves to these figures who overcame so much, so gracefully. Clearly, patience and humbling of self will in part, cradle us amid suffering far more than isolation, anger and magnifying our pains.
For most of us, our personal “but if nots” will not delay our relief forever. Most trials and hardships end. But for some, “but if not” extends indefinitely – at least in this life. These souls inspire me the most. One is a woman who has consistently left me beautiful comments in response to my posts. She has sent me encouraging messages and shared some of her story with me through them. She has had Lyme a very long time. She has been sick for a very long time. Instead of allowing caustic and unforgiving thoughts to flourish due to circumstances I would deem very unfair, she has made her peace with her experiences. She has forgiven those physicians who have “shown her the door”. She spreads love and hope. There’s that love word again. She recently shared with me that she believed her time to be nearing its end. During a period where I was bemoaning the return of some minor symptoms, here was a beautiful soul giving me the ultimate example of gracefully accepting her own “but if not”. She sent me this photo once telling me how beautiful it will be when I’m well and can once again fly.
But this is no photo of me. This is her. I pair it with her last message to me, “Time to try and ‘find my way back to Kansas’ – with a rest.” She did not simply exist to the end, she grew. She flies.
Though deaths of loved ones (and the deaths we see routinely happening in the Lyme community) are treated as tragic misfortunes, and some (specifically in the Lyme community) happen at the hands of malicious agencies who deny life-saving treatment, there is another perspective to consider. And perhaps I will be controversial in saying this also. But I’m bringing Maxwell in again to back me up:
“We cannot expect to use our faith and prayers all of the time to block all of the exits for all of the people. There must be ways out of this experience as well as a way in [speaking of mortality]. And indeed there must be endings, even for graceful enduring, when enough has been done and when enough has been borne…”
Not everyone lives happily until 85 and then dies peacefully in their sleep. That was never the plan. That would never have required faith. That concept would assume we are here simply to eat, drink, and be merry. We’re here for a far greater purpose. Though I love Maxwell, I also simply adore C.S. Lewis. In his book The Weight of Glory, he states “the cross comes before the crown and tomorrow is a Monday morning”. Such is the structure of life. How insightful. I love that. Is not life a perpetual Monday morning? Is not life a heavy cross to bear at times? But, have we not been given the promise of this pattern of sorrow before joy? Work before rest? Bitter before sweet? There is One who knows when the test is over, when the student has finished, when “enough has been borne”. And it isn’t you or me.
At my last doctor’s appointment Dr. J exclaimed that he thought I just might be ready to end the major part of my treatment come January and move to a maintenance program as I re-integrate back into normal life. I am doubtful given my recent response to treatment. “But if Not”… I will be ok. I can endure more treatment. I can delay my plans a little longer. I can suffer for just a bit more. I can accept more time to refine and test my virtues. I can.
I leave you with a cover The Piano Guys did mixing Rachel Platten’s This is My Fight Song with the ever classic Amazing Grace. I watched this recently and it moved me… but perhaps I am always a tad over-emotional. I just love how complimentary these two songs are. Yes, we as imperfect humans fight and press forward against an ever-raging tide, we endure and strain at the burdens of life and the battles against self as we undergo the tutorials of personal betterment, but still, it is by grace we are saved (from trials, sufferings, but-if-nots, and life itself), after all we can do.