Kleine-Levin Syndrome: A Family Ascends the Mountain

It is particularly significant to me that my friend, Jonathan Lyons, allowed me to share this reflection he wrote in advance of Rosh Hashanah this year. He, his wife Barbara Forbes-Lyons and their son, Avner, are navigating a changed life due to Avner’s diagnosis with Kleine-Levin Syndrome (KLS). My goals in sharing Jon’s story are a) to support him and his family b) to expand awareness of KLS c) to help other families coping with the chronic and severe illness of a child know they are not alone and d) to celebrate the fact that this family is not defined by KLS. 

Yom Kippur. a time of atonement and repentance, is approaching. This quote (attributed to Maya Angelou but I can’t completely confirm) said something about forgiveness that pertains to Jon’s piece:

Forgive yourself for not knowing what you didn’t know before you learned it.

Jon’s post touches two complementary ideas:

As parents, he and Barb have been weighed down by the heaviness that comes from trying to define (and resolve) the rare condition that became apparent as their son’s physical condition and behavior changed drastically. 

Related, as Jon mentions in the post, he and Barb were told that perhaps they should move on emotionally. Why do we as human beings presume to know what a family going through something so intricately difficult and chronic needs to do? It must be hard to forgive these people for “what they didn’t know before they learned it” but perhaps this post can put a tiny dent into helping others learn.

~ Paula

Kleine-Levin Syndrome

Jon, Barb and Avner

Yom Kippur is nearly upon us. The cycle of the new year has begun for Jews around the world and part of this will include reading of the binding of Isaac, Abraham’s favorite son, born of his wife Sarah. None of that was on my mind until just recently.

It struck me, seemingly from nowhere. For the past couple years, nearly the only thing on my mind was the health of my only child. My son, Avner has a very rare, devastating neurological illness called Kleine-Levin Syndrome (KLS). KLS is a form of ideopathic hypersomnia. That means that people with KLS, sleep a lot. Some of them sleep for days at a time.

When they are not asleep, but “in an episode” their waking moments are marked by mood changes, memory deficits, and many strange behaviors. Parents like myself, flock to the online support group and frequently rant when our children are gone again. We hope it will not be for long and that this might be the last such episode.

Often this disease takes years to be properly diagnosed. Patients frequently collect incorrect diagnoses of severe mental illnesses until a doctor or a desperate parent finds the KLS diagnosis and the search begins to find a qualified medical team that can test and evaluate the patient for KLS. I say parent, because the mean age of onset for KLS is 16 years old, but my son had his first episode at 12. Some aren’t diagnosed or experience symptoms until well into adulthood.

My son’s prognosis is tentatively good. He responds well to a course of medical treatment. Only 30% to 40% of patients see relief from lithium. No other drug currently performs as well. Though we also rely on a second medication which is custom compounded for hypersomnia patients, as an off-label prescription.

I tell this tale frequently. I tell it too frequently. As a parent of a healthy child, until this disease, I was ill prepared for such a radical change in lifestyle and perspective. Parenting is difficult and we all struggle at times, but without much doubt, my wife, Barbara and I have struggled more than many because of the great uncertainty created by KLS. Even now, we do not know if our child will wake tomorrow or if we will return to the painful cycle we lived before the medication seemed to be working.

So, someone who heard me tell the tale too much, told me so and suggested it’s time to move forward again. It woke me up and made me more self aware, which is certainly a theme of Rosh Hashanah.

After sleeping on it, a little like Jacob, wrestling his own angel, I had my own insight. We all read biblical stories through the lens of our own experiences. The Binding of Isaac certainly invites such opportunities.

My friend David turned to me one year during holiday services and said to me “Isaac was an idiot.” We ducked out of services so he could grab a quick bite and he laid before me his literary criticism of Isaac and made a compelling case for some kind of developmental deficit. It absolutely fascinated me and probably established my deep interest in this passage as an insight into late Stone Age or early Bronze Age cultures.

In our sanitized modern culture, the story still horrifies us. No doubt, some kids must come home from services wondering if their parents are going to tie them down and offer them up as a holy sacrifice. Post Holocaust, a common criticism of Abraham is that he failed G-d’s test because he argued for the innocent of Sodom and Gomorrah, but not for the life of his own son.

Now I’ve gained yet another perspective on the tale. We read this story from different key perspectives through our lives. Upon our introduction to the story, usually at a young age, we see the story as Abraham’s servants saw it play out before them. They brought the wood and their master and Isaac. They saw the plot played out before them with keen interest but without personal investment. On those initial readings, we learn the sequence of events and we know that they have great importance.

We become familiar with the story and we try on the role of Isaac. At first we wonder at the journey and we put our trust into Abraham, when he tells us that G-d will provide the ram. We experience the fear of the raised knife. Like young adults, we may feel indignity at being the passive object of everyone else’s designs. Where is Abraham’s chutzpah, willing to raise his objection to his G-d in the name of the unverified good souls in Sodom and Gomorrah, but not for his own flesh?

Perhaps, like my friend David, you seek an explanation by way of some defect in Isaac. Was he a simpleton, unable to speak intelligently for himself? The narrative makes quite the point of the simple childlike questions that Isaac asks, yet the chronology of the story tells us that he is a grown man by this time. Could this have been a Stoneage rite, to rid the tribe of members who could not contribute? Could the importance of the tale be that Abraham broke the tradition to give us a new modern morality? Did Abraham pass the holy test by sparing his son or following the command of his deity? Did he fail for following an immoral order without question? These questions have long been debated between Jewish scholars.

Yet there is another reading. Parents who enjoyed the growth of healthy children and suddenly struggle with their own infirmities while caring for an ailing child know this reading. Abraham has grown old in the service of his Lord. He has profited and grown his wealth and that of his people. All has gone well for this servant of G-d. Abraham has G-d’s ear and great influence in his known world. Then his life which moved from strength to strength changes course abruptly.

My own child was strong, energetic and brilliant with an insatiable curiosity. We used to run together when I trained for triathlons. Then he disappeared inside himself for more than two years and we were living with a walking husk of the child we once knew.

It occurs to me, that maybe we have been reading the story of the binding of Isaac all wrong. It’s not a test of Abraham’s will, or devotion or even his ultimate morality. It’s not a test at all. Through Abraham’s eyes it’s a journey of a father who faces an impossible task regarding a child he loves. He has no choice in the matter. His only option is to move forward through the horror ahead.

In the next part of Abraham’s tale, he loses his wife. He does not speak directly to G-d again, as far as we know. He seems broken by the experience as far as we can see. His demise follows closely enough, and the great wealth and the land holdings he gathered will not pass to the next generation. Isaac was a dweller of tents, we are told. He was a nomad.

It doesn’t make for a tidy reading. There’s no tightly knit resolution, except to say that everyone continued to live their lives and that struggle would ensue.

Those of us who have watched a healthy child fade before our eyes, walk in similar paths. We watch the graduation announcements and the triumphant first day of school photos in social media. Instead,we celebrate when our child is well enough to continue school, or the school is willing to amend accommodations that help our child stay enrolled, if we are very lucky.

We are ascending the mountain, because we must. We have the blade in our hands. Our beautiful children walk beside us, struggling under the load of the wood they bear to the altar. We are both hoping and praying that this will work out in some other way than what it seems. We continue through the day. Then we gather our loads, and we do it again.Kleine-Levin Syndrome

How You Can Help

To educate yourself, visit this link.

To donate, click here.

To learn more about how to speak with a family dealing with a rare illness, click here.

 

Wife of one, Mom of two, Friend of many.

2 thoughts on “Kleine-Levin Syndrome: A Family Ascends the Mountain

  1. WOW! I have never heard of any disease at all like KLS. That’s got to be horrible for all of them. It’s even more horrible for someone to tell them to move on. What!?!?! That makes no sense. I struggle with the story of Abraham and Isaac. I believe the full Bible – and I trust God, but I struggle with some stories and I certainly struggle with illnesses like this one or like anyone that are devastating to human life in every way. Thank you for sharing.

    • I so appreciate Jon (and family) sharing their story — and I was very moved by the way he wove in the Biblical story. They demonstrate grace and tenacity (and love), always.

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