The Mormon Soprano describes the heartbreaking and mysterious illness of her daughter:
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”.
She explains that not having a diagnosis makes the situation even worse, because of the isolation from others who might understand you:Continue reading
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.
I can’t even imagine how difficult it must be. For my work we are studying how newborn screening for congenital CMV might help parents avoid landing in the same situation, wondering what is wrong with their child but not really knowing.
Other people, in their desire to help, aren’t always helpful:
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.
And the challenges seem mind-boggling to me:
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.
She sweetly goes on to list things she’s grateful for in this season of spring–the birth of Jesus, his atonement, the Restoration, General Conference, the earth awakening.
Please hang in there Mormon Soprano and daughter and family, and know that our thoughts and prayers are with you.