thank you Christian Wiman

In the midst of struggle, I often turn to books. Talking to friends and family can be somewhat helpful but sometimes I need to enter into the life of another as page after page allows me to tag along for the journey. I like to read the unvarnished truth--the words the author may or may not say out loud to his own friends and family. I am forever in search of truth.

If you have read the blog post previous to this one about my health issues, my need for answers predominates the discussion. What lurks between the lines is my need for someone to walk with me through the valley of the shadow of death, and I was fortunate to find Christian Wiman, author of My Bright Abyss. Wiman has no idea of my existence and we are not friends in any sense of the word. But he has been with me as of late, encouraging me with the starkness of views about his life with cancer, his impending death, and how the Creator of the Universe figures into the equation. As I was hanging onto his every word, feeling inspired, crying along with his revelations of truth, my attention is now shifting away from the contemplation of death--as my death sentence was premature--and I am feeling pangs of guilt, leaving him behind.

It seems odd to me how I can arrange my thought processes to reflect whatever truth I choose to believe. And then, whether conscious of this or not, I go about finding others who are willing to agree with me. It validates me to come across sentences like, "Faith steals upon you like dew: some days you wake and it is there. And like dew, it gets burned off in the rising sun of anxieties, ambition, distractions," written by Wiman, and say to myself--yes, it is ok for faith to waiver like mine just has. It is not my faith in God that has come into question, however, but my faith in thinking I know what God is up to. To me it is not the same. God's existence is absolute and his love for me eternal. That does not mean he is going to grant me my wishes, answer my prayers the way in which I have carefully laid them before him with that intention in mind, or even that good things will happen--what I may consider good anyway. God is God. He can do or not do whatever it is an Almighty being would choose to do. How I deal with it is up to me.

So when Wiman suggests that faith gets "burned off in the rising sun" of whatever life throws in my direction, I know what he is talking about. Faith is not needed when the check is ready to clear the bank. Faith is needed when the check is not forthcoming and the calls from the collection agencies start to show up on the answering machine. Faith is not that all is well. Faith is having a sneaking suspicion that all is definitely not well but in time it will be. The big question is when. Does the bottom have to fall out of everything first? Answer: maybe. Will it mean that God does not care? Answer: no. Does God caring have anything to do with the prayers that need to be answered this week? Sort of. He cares. He provides. He will listen to anything I have to say. But like a small child forming her chubby little hand into a fist to say, "No! I won't!" to a parent who has insight into life the toddler lacks, so goes my relationship with God. It is not for me to know but to trust. It is not easy.

When I thought my own demise was near, I started to take on a different point of view. The future looks different when there may not be one. Each day takes on greater significance. A bite of food is savored when the thought of not being able to taste it is introduced. The need to write and use one's gifts move to the forefront as the thought of being silenced once and for all comes into play.

But death will meet us someday. It is part of the script we all live out. Like William Shakespeare said, "All the world's a stage and all the men and women merely players: they have their exits and their entrances . . . ."  Of this one thing we can be certain. Knowing how and when is the secret. Someone dying of cancer can pretty well figure it out. And though he can be seen as brave, I have no doubt there are days when Wiman resists that description and is even mocked by it. Could he trade in the bravery and get his life back? he may wonder. What is so great about being brave anyway? And who gets to decide if someone is brave or whether hidden tears and an underlying fear come to define the person when no one is around.

We want people to be our role models and show us how to believe and the appropriate ways to handle various situations. Wiman's dying is palatable through his book. He makes it seem doable. But he also includes in the writing that years have gone by since a paragraph was penned, inviting one into the depth of pain and frustration a writer must feel as he is searching for words to explain his condition while it is deteriorating rapidly. The platitudes fall away, Christian or otherwise. The trite phrases about God, his healing, his mercy, all take on sinister overtones to the person planning his own funeral. Life exists until death takes it. It is not for the one looking in from the outside to even know what it is like and certainly not to make any kind of judgment. It is a solo journey and yet God accompanies the one who can still reach out. But as I discovered in my brief adventure toward this end, it is God who lifts my hand to hold his. I cannot not even do that much myself.

So thank you Christian Wiman. For sharing your heart poetically and honestly in a beautifully written book that has inspired me. For not hiding behind words but allowing them to draw out your truth, as raw and unforgiving as that is. For living out the role you never meant to be cast in. And for the perseverance it has taken to assign words to the unspeakable; a quiet commentary on that which most would rather not consider.

"My God my bright abyss
into which all my longing will not go
once more I come to the edge of all I know
and believing nothing believe in this."

--Christian Wiman, 2013, My Bright Abyss, Meditation of a Modern Believer

to be normal again

"So, you have tested positive for lupus," she said matter-of-factly--this woman about my age looking intently at her laptop, as we sat together as strangers in a tiny room with a couple of chairs and an examination table.

"But I was told by my general practitioner that I had Sjogren's Syndrome," was my protest, which was not exactly true because I had not heard the news from my doctor but from his assistant who called and rather nonchalantly mentioned I now had an incurable, chronic disease. This new doctor, a rheumatologist to which I had been referred, must have sensed my rising panic, especially since she was telling me I now had two incurable, chronic diseases, and instead of entertaining any of the questions that I had almost a month to formulate, said we would talk after further lab tests, x-rays, urine specimens and whatever else were thoroughly evaluated. In other words, I would be waiting another three weeks.

How I arrived at this place in life is still somewhat of a mystery. About a year ago I started to feel worn out and attributed it to the schedule I was on: following my boys in all of their sporting and musical events; working a part-time job while keeping an art business going; and volunteering to be on three boards with regular meetings and expectations. Eating right, sleeping enough hours and exercising regularly sometimes are not at the forefront of one's life when so many immediate needs present themselves. I did what I could to keep up.

Sometime last October I developed a toothache like none other and on Halloween I was treated to my first root canal--a trick, not a treat. Still not feeling my best I figured my hypothyroidism was acting up--a chronic condition I have been dealing with for the past ten years. There also loomed before me the dreaded menopause with all of the changes that accompany it. So many reasons to not feel great and yet no clear answers.

Six months after the first root canal it was apparent that my tooth had become infected so root canal number two was scheduled. A couple of weeks later came root canal number three, technically more of a repair--all on the same tooth, the one that meets the other tooth that allows my open bite mouth to chew food. After over fifty years of use, maybe the orthodontist I saw when I was 16 was right when he predicted I would be gumming my food by the time I was 40. The idea of braces at the time would have affected my flute playing which caused me great angst and my parents were not eager to spend the money, especially when fixing an open bite is not guaranteed. So I continued to go on not being able to chew correctly and not worrying about it.

Trying to make it through my son's senior year began to feel like a death march and by the time our college-aged son had returned home to take over the front room and half the dining room table, I was ready to give in to the clutter and seek to find rest instead of fighting a losing battle to keep the house in any kind of orderly fashion. Hoping to restart a regular exercise regimen to try to regain my strength was a short-lived hope as my husband found a summer job and my son decided to take summer classes, leaving me with no transportation to the gym. I ran until it was too hot outside and tried to get to the pool whenever I could, but the fatigue and joint pain just got worse.

By this point my endocrinologist intervened, taking me off the natural hormone I need to regulate my metabolism and prescribed a synthetic one. I was in too much of a fog by that point to understand what it was he was doing--until the bottom nearly fell out of my life. I no longer could sleep and would cry uncontrollably with little or no provocation. I gained 10 pounds in one month. Depression, a symptom of inadequately treated hypothyroidism, spiraled me to a level I had not before reached. I was becoming someone I was not meant to be, I explained, as I told my doctor I would not be taking any more synthetic hormones. Ever. But the numbers are normal, he explained. I, however, was not.

I began to wonder if this pain I was in was real or imagined. I do not want to be sick. I want to go running. I want to lose weight. I want to have an overall sense of well-being. I am not depressed. Though I do not tend to have the most cheery of dispositions, I am a writer so that is to be expected. This is what I kept telling myself. Whenever I tried to pray, I cried. I had no words that could adequately explain what it was I was hoping for. Whatever it was, I certainly did not think it would be chronic diseases that would perhaps eventually take away my ability to use the very gifts God has given me. I felt like life as I knew it was ending ever so gradually.

Last Tuesday I went back to receive the final diagnosis from the rheumatologist. I was bracing myself for anything from lupus to lymphoma. What is the worst that can happen? I asked myself. Well, I could die. No, I decided, that would not be the worst. The worst would be living with a chronic, debilitating disease that would shut down the reasons for joy in this life. Having people tell me I am brave after I would learn to withhold my emotions so they would not see me feeling desperate, was not something I was looking forward to. Explaining to my friends and loved ones that the woman they once knew no longer exists was something else that burdened me as I am usually the one others turn to for bearing their burdens. It is what it is. I sat waiting with my throbbing head, having scheduled another root canal.

"You do not have lupus and the only test that showed any abnormality was for Sjogren's and it was so slight, I am not diagnosing you with that either," she said. What?! Though I was excited for this good news, I also reminded myself that this is specifically why I am not fond of the medical community. For almost two months I have been on death row, in my mind. I have walked myself through all sorts of scenarios, none of them particularly heroic or brave. I have cried out to God and have had times of silence wondering what I would do if. Nevertheless, I was not abandoned and at times I felt the Spirit of God embracing me in ways more powerfully than I have ever experienced. Contemplating an eternity in heaven is not all that scary. It is the process it takes to get there that gives one pause.

Instead of a fourth root canal, the dentist performed an apicoectomy in which the infected roots are cut from the tooth and the tooth magically continues to stay in my head, or at least that is the plan for now. My mouth hurts and my lip is swollen. I took the day off to gather my thoughts, prepare for a meeting and hopefully do some sewing as the holiday season will soon be upon us. My dentist said that a chronic fatigue condition sometimes develops when a tooth remains infected over a period of time. My health may yet prevail. Or at least maybe I can find a way to make peace with a new kind of normal.

ready or not

Slowly, working my way through the expected recitation of numbers, 98 . . . 99 . . . 100, I would then yell out, "Ready or not, here I come" and begin to look for all those who had found a place to hide.

The best place for hide and seek was Grandma's barn since by the time my sisters, cousins and I were old enough to be allowed the freedom to explore outside of the house, there were no more horses or any other animals making their home there. A chute where hay could be dropped into a stall became a passageway we would learn to maneuver as well as the ladder that led to the hay loft. A big, old barn can provide hours of fun for those able to create the right game. There was no better place to hide or to seek.

We naturally divided up into teams and even though I can admit to the unfairness of this now, my cousin, Michael, and I were the oldest so we would choose to work together to outsmart the younger ones and win every time. We were in charge. We created a version of the game and made up the rules to suit ourselves. The younger children would follow us and try to keep up even though we were always dodging them.

It seemed that each time we had figured out a new twist to the game that would make it even more challenging, and we would have barely worked out the finer points of this new, improved version, the unmistakable sound of my mother's voice, calling us back into the old farmhouse of her youth, would echo through our made-up world and we would have to reveal our hiding places and go home.

There was always the hope that we would come back and it would be better the next time. I remember waiting for that to happen. But then came the day of the auction when everything of value was sold. Eventually the house my mother grew up in became someone else's home. My last memory was finally getting to go into the attic and playing with what would have been considered antique toys even then--the kind that were made out of metal and wood and required imagination, not batteries.

We would take a drive out on the dirt roads by the old house whenever my mother felt like reminiscing, but someone either was not careful in the kitchen or the house was struck by lightning. In any case, it burned to the ground. Michael, the cousin I most looked forward to seeing at my mother's family gatherings, died too young.

To make the discovery of whatever it is that makes my heart sing is a glorious feeling. At last, I have found something I can put all my energy into, I tell myself. From this point on, I have a new goal, a new outlook on life, a new calling. I see life in a whole new way. It transcends words shining through my smile and my near-sighted eyes. Feeling more powerful I take up running again. I make an effort to reveal my heart to prospective friends. I tell myself it is going to be different this time. From now on.

It is then my natural inclination to try to hold onto this feeling, this hope, this dream as tightly as I can for fear that it will get away from me like a balloon filled with helium whose tiny string playfully slips through my fingers. I make a mad scramble to hang on with everything I have got. And then it is gone.

I think about the once-in-a-lifetime occasions that I did not figure out how to do until they were over. The less significant events like having an epiphany on the way to turning in a research paper, suddenly knowing that I had completely missed the point of the assignment, but now possessed the insight I would not have an opportunity to expound upon pales in comparison to details missed on the morning of my wedding, or what I should have done differently in the process of giving birth. I knew how to get better grades in school after I graduated with a grade point average that did not reflect my ability. Likewise I knew how to put on a wedding by the time ours was over and had finally learned the most efficient way of pushing out a baby by the time we were done adding children to our family.

It is only rarely in life that I have had the presence of mind to understand what is happening while it is going on. And sometimes right in the midst of life going well, I have had the sense that because I am doing what I love it is only logical that this could go on forever. And should. But it doesn't. Something happens. People change their minds. Unexpected scenarios rear their ugly head. The ladder that appeared so sturdy has broken rungs.

And I, like my nine-year-old self, am left standing in an old empty barn as the sun is setting and the wind turns cold. Not wanting to leave the game that had gone on seamlessly for hours, I walk slowly into the house to get ready to go back to the reality of a working farm, where I spend a great deal of time in the house to avoid getting sunburned or breaking out in a rash from the fertilizer.

There I find a different hiding spot and resume my adventures in my books.