It’s March already. How did that happen? I’ve been MIA; operating in such a fog for so many weeks and months I’ve lost all sense of time and place. Just managing to get up each day, dress, go to work, fulfill my volunteer service each week, care for my family and fall back into bed again has stretched my limits physically and emotionally.
But, there’s something different today. A breath of change is in the air, light has replaced darkness streaming through my morning curtains, and I woke to the happy chatter of wild finches outside the window. My heavy burden insistently sloughs off its dreary over-coat, just like the green things in my yard pushing up through dead winter leaves.
Spring is coming! It is time for new life.
It’s been 6 months since Daughter A returned home ill from her LDS mission service and our journey “down the health-care rabbit hole” began. It’s been 4 months since she suddenly lost her ability to stand or walk on her own. It’s been 3 months since she lost the ability to use her right arm. It’s been 2 months since she returned home from the hospital worse off than when she went in. It’s been 2 days since her last unexplained seizure.
Even after 50 days of hospitalization from November – January, every procedure & medical test imaginable performed, various treatments both intensive or invasive tried, diagnoses proclaimed and then retracted…we still do not have a name or face for the ‘enemy’ we are fighting. The masked bandit that has snatched the vitality away from our beautiful, talented daughter and upended our lives is still “at large”.
Facing a critical illness as either a patient or loved one is always an agonizing physical & emotional trial. Facing a critical illness with no diagnosis adds additional torment and emotional chaos which places the family in medical Limbo: a personalized hell with no way to go back, but no path provided to move forward. Being provided a [correct] diagnosis gives you the chance to belong to “a group” of fellow travelers suffering through a similar journey. It may not be a happy journey, but it gives some answers. A lack of diagnosis places you in a state of continual ‘solitary confinement’ . Locked in a lonely room as you wait and wait and watch the door wondering when it will open to set you free. You get to the point you don’t care what the answer is. You don’t care if the answer is scary or even if it’s fatal because nothing could be worse than sitting all alone and abandoned in the dark.
We live in the Age of Instant Information. We have come to expect that all the answers to life’s questions can be searched & found on Google in 30 seconds or less. It’s almost funny how much panic ensues if an answer takes longer than 30 minutes, an hour, or – heaven forbid – a whole day, to find! So, the idea that an answer could not be found by expert ‘answer seekers’ after 6 months is nearly unfathomable to a modern mind. But, that’s what we are learning to live with. We are aware that millions of others have been wandering through their own Medical Limbo for much longer than us. So, we are all “alone” together…but, that isn’t exactly comforting.
The insatiable drive for people to “have an answer” is just one of the many reasons it’s so hard for our family to talk about our medical saga to others. People don’t seem to realize how invasive it is to be continually drilled with inappropriate and personal questions in an enthusiastic effort to “solve the mystery”. I know, you feel like you can’t help it. You’re thinking of your brother-in-law’s cousin’s best friend who once had a similar symptom and finally got diagnosed with s0-and-such. The urge to share this info is nearly uncontrollable in the hope for a victorious answer! But, please be aware that your unbridled enthusiasm exhausts, and quite often frustrates us. As much as we want a diagnosis, what we really need from you is kindness. We need someone who won’t judge. Someone who won’t try to “solve” or “fix”. Someone who will just stop, listen, care, be there if we need you – and back off when we need privacy.
It’s complicated right now. Thanks for understanding.
Living without an answer is utterly maddening for the human mind. We can’t bear the suspense it makes us feel and the emptiness it creates inside. The frustration of any mystery left unsolved effects humans on all sides of the medical equation. In a popular open letter To Patients with Chronic Disease , Dr. Rob Lamberts reveals how secretly terrified doctors are of patients with rare or unexplained illness.
You scare doctors
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
- Dr. Rob Lamberts
As soon as our insurance benefits were worn out, used up, and utterly depleted and the experts had exhausted their expertise, the hospital called with a shrug of their shoulders and told us to come collect our daughter.
We have soldiered on the best we know how. We’ve exercised our creativity handling all the simplest of things that everyone usually takes for granted – things that aren’t actually simple at all when suffering from a serious illness. Feeding. Bathing. Dressing and undressing. Getting in and out of bed. Moving from point A to point B. Making the daily epic climb of “Kilimanjaro” [aka the staircase]. And then there are the really “major events” such as leaving the house for a doctor appointment, taking a “quick” trip to a store, or an outing to a movie theater or restaurant.
But, in time, we have developed a routine of sorts, and learned our limits. Life has to move on, even without answers. Little Sister, Mr. Mo & I had to return to work and school and our “real life” responsibilities while Daughter A stays at home. It’s not even close to being OK. But, it’s all we can do for now. This routine is meant to be a “temporary solution” until we find out “the answers” of what, why and how.
We try not to notice how the days and weeks and months continue to roll by with no answer. But, how can we not notice the change in seasons? She returned from the mission in the Fall. She was hospitalized through the Winter. And now…it is Spring.
- Hope springs eternal in the human breast;
- Man never is, but always to be blessed:
- The soul, uneasy and confined from home,
- Rests and expatiates in a life to come.
- Alexander Pope, An Essay on Man
Historically, really good – MIRACULOUS – things always happen in Spring!
- Biblical scholars generally concur that The Babe of Bethlehem – our Lord and Savior Jesus Christ – was born in the Springtime. It is fitting that The Lamb of God arrived symbolically during lambing season. Many Latter-day Saints believe his specific natal day was April 6th, as literally interpreted from D&C 20:1. [although the LDS Church has not taken an official position]
- Jesus suffered in Gethsemane, was unfairly accused and sentenced, and bled to death on the cruel cross of Golgotha as Passover approached. Then, in the morning of the third day, the darkness lifted and springtime burst forth in all of its most perfect glory as the Garden grave burst and Christ rose up again. He Lived and He Lives!
- The boy-prophet Joseph Smith entered a grove of trees to pray “on the morning of a beautiful, clear day, early in the spring of eighteen hundred and twenty“. During that simple springtime prayer the boy experienced a miraculous visit by God the Father & Jesus Christ – an event that would change his life, and the world, forever. (Joseph Smith History)
- The Church of Jesus Christ of Latter-day Saints was formally organized in upstate New York on April 6, 1830. The Church began humbly that spring day with only six members, but 184 springs later it has grown and thrived with a membership of more than fifteen million world-wide and counting!
- The Spring session of LDS General Conference provides messages from living prophets and apostles to the world! In just 4 weeks from today – April 5th – 6th 2014! we will once again have an opportunity to recharge our spiritual battery, find comfort, motivation, and inspiration to change our souls forever.
- Mother earth is awaking from her slumber, showering healing drops of rain and filling every corner with new life.
Today, I am renewed and refreshed. I have faith that in time, the answers will come. I hope it will be sooner than later. Until then, I’ll hold onto the promise of Spring! - MoSop