Lisë and I met in the fall of 1980 in our freshman year at Clark University. The following year, she transferred to Brown. The year after that, I bolted Worcester for a year of university in Switzerland. And our paths diverged from there. Though it’s hard to imagine now – even for those of us who can remember – those were the days before Facebook, before email. At the risk of sounding antediluvian… before cell phones and the internet. So, keeping in touch meant you licked a stamp (yes, we still licked them then) or dialed a phone number. From a landline. But we were young and busy and I was living in New York and then San Francisco, and Lisë married and started a family in Cambridge. Ironically, we reconnected just as I was moving from Boston back to California. But that’s all it takes, sometimes, just touching base.
Fast forward another decade… my friend makes an annual trip to see her grandmother, who is in her 90s and lives just south of Los Angeles, where I now live. So our paths cross again. A couple of years ago, Lisë was out here with her parents and her daughter Shoshi, then about 13. It’s fantastic to see an old friend after many years; it is mind-blowing to meet your old friend’s child! And wonderful.
Last January Lisë was in LA again. This time with her son, Gabriel, who was soon starting an internship up in Silicon Valley. We met for a fun dinner in Hermosa Beach to celebrate Gabriel’s birthday. Afterwards, Lisë said to me, “Now I want you to meet Eitan!” Her middle child, in the middle of his freshman year at UMiami in Florida. But I would never get the chance to meet him.
On Valentine’s Day 2013, Lise Stern got a call from the University of Miami, where her son Eitan was a freshman. She thought for a moment it might be someone soliciting donations for the school. But then a dean’s voice said: “There is no easy way to say this. Your son has passed away.”
Lisë just sent me the link to this story in today’s Boston Globe. It is surreal to read this headline in the third person, knowing that the “mother” and “son” it refers to are… Lisë and Eitan.
I know it was difficult for her to do this story. It will be one year ago this week, on Valentine’s Day, that she learned her son was gone. And this newspaper story would require her mind and her heart to cede a little more territory to the relentless onslaught of reality. But I also know that my friend chose to do this to help raise awareness of SUDEP among parents of children with epilepsy – and to continue the dialogue about SUDEP among the pediatricians and neurologists who care for these families.
SUDEP is one of those coldly efficient medical acronyms (like SIDS or GERD or AIDS), short for Sudden Unexpected Death in Epilepsy. Please, click on the above link to the article, which has valuable information.
Epilepsy is one of the least understood medical conditions, in spite of a century’s worth of research and experience with seizures and treatments. There are medicines that may make seizures less frequent. People with epilepsy – especially children and young people – can be otherwise perfectly healthy and unaffected by it. Seizures can be extremely mild or of the type called grand mal, involving the entire body; they can be scary and sometimes dangerous. But it is still extremely rare for an epileptic seizure to be fatal. So rare, that many doctors do not even discuss the possibility of SUDEP with their patients or parents. Why worry them about something that medicine can neither predict nor prevent? But, as Lisë explains, “My feeling is that awareness can bring prevention” and “Knowledge is safety.”
I never met Eitan. In the year since his death, I have come to learn so much about him through his mother’s weekly remembrances on Facebook and on a website dedicated to his memory. He was smart and funny and kind. He loved sports. He wrote poetry. He and his brother and sister were a tight trio. He made friends easily and kept them close. He lived every day of his almost 19 years. He loved so well and was so well loved. And if he left this world far too soon… he left it so much better than he found it.
I share this story, Eitan’s story, Lisë’s story, with the WordPress community to help educate people about epilepsy and SUDEP. Whether you have epilepsy, or love, or know, or treat someone for whom epileptic seizures are a fact of life… you’ll have a better understanding of what epilepsy is (and is not).
I share this in the hope that it will make us all a little more insistent that our resources be directed to medical research and treatment of these things that rob us of our lives and our loved ones.
I share this because, though I never met Eitan, I know he would want his story told and retold to help even one kid or one parent or one sibling understand epilepsy and feel empowered to live life to the fullest… and longest.