Recently, a thoughtful reader left a comment to my blog post, parent perspectives. It read:
I mulled the words over in my mind for a long while, tried to think if I could remember any stories of triumph over epilepsy. After a while I was able to come up with a handful at best. There is the story of my friend Jim Abrahams' two year old son, Charlie, whose thousands of stubborn seizures stopped after going onto the Ketogenic Diet. He'd had to stay on the rigorous, exacting diet for about five years, if memory serves me, but he hasn't had a seizure since. Charlie is now a healthy young adult. Then there is my friend Susan Axelrod's daughter, Lauren. After eighteen years of persistent seizures, failed trials with over twenty drugs, dietary therapy and one or two brain surgeries, they finally discovered a combination of drugs that stopped her seizures. And then there is my friend Michelle's sweet boy Miles, who has Down syndrome and suffered seizures for many years. He'd tried several medications plus the Ketogenic diet and his seizures finally stopped. I am unclear if the therapies worked or if he simply outgrew the epilepsy. What is clear is that now his body and mind can be free to develop at a better pace.
In all three cases I have little doubt that the years of seizures and drugs took a major toll on the children's development. In Lauren's case she is significantly developmentally delayed and still has to take three drugs every day which, regrettably, don't come without side effects, and she may well have to take them for the rest of her life. I also have little doubt but that these children remain brilliant stars in the eyes of those who love them.
Seeing things from a different perspective, and though I would give anything—ANYTHING—for Calvin to be healthy, seizure free, drug free, able to walk and talk and run and play, I have found a rich and beautiful life nonetheless, one that my friend Elizabeth, whose daughter Sophie has acute epilepsy, reminds me is also totally strange. I have encountered feelings to a depth I had no idea was possible—joy, anger, frustration, empathy, love, grief. I have learned to honor these feelings, every one of them, as part of being human. I don't fear them, I don't try to sweep them under the rug and I definitely don't hide them. They are part of me and, to a great extent, exist in such profundity because of Calvin and who he is. And the mere fact that I can say this about myself, that I have a rich and beautiful life, is one significant triumph over epilepsy.
These are all difficult stories. I share in them with my child. But, I
was wondering do you have any story that had a turn for the better? That
would be good stimulus for us all!
I mulled the words over in my mind for a long while, tried to think if I could remember any stories of triumph over epilepsy. After a while I was able to come up with a handful at best. There is the story of my friend Jim Abrahams' two year old son, Charlie, whose thousands of stubborn seizures stopped after going onto the Ketogenic Diet. He'd had to stay on the rigorous, exacting diet for about five years, if memory serves me, but he hasn't had a seizure since. Charlie is now a healthy young adult. Then there is my friend Susan Axelrod's daughter, Lauren. After eighteen years of persistent seizures, failed trials with over twenty drugs, dietary therapy and one or two brain surgeries, they finally discovered a combination of drugs that stopped her seizures. And then there is my friend Michelle's sweet boy Miles, who has Down syndrome and suffered seizures for many years. He'd tried several medications plus the Ketogenic diet and his seizures finally stopped. I am unclear if the therapies worked or if he simply outgrew the epilepsy. What is clear is that now his body and mind can be free to develop at a better pace.
In all three cases I have little doubt that the years of seizures and drugs took a major toll on the children's development. In Lauren's case she is significantly developmentally delayed and still has to take three drugs every day which, regrettably, don't come without side effects, and she may well have to take them for the rest of her life. I also have little doubt but that these children remain brilliant stars in the eyes of those who love them.
Seeing things from a different perspective, and though I would give anything—ANYTHING—for Calvin to be healthy, seizure free, drug free, able to walk and talk and run and play, I have found a rich and beautiful life nonetheless, one that my friend Elizabeth, whose daughter Sophie has acute epilepsy, reminds me is also totally strange. I have encountered feelings to a depth I had no idea was possible—joy, anger, frustration, empathy, love, grief. I have learned to honor these feelings, every one of them, as part of being human. I don't fear them, I don't try to sweep them under the rug and I definitely don't hide them. They are part of me and, to a great extent, exist in such profundity because of Calvin and who he is. And the mere fact that I can say this about myself, that I have a rich and beautiful life, is one significant triumph over epilepsy.
Yes, I believe that saying you have a rich and beautiful life is a triumph. And it may even be enough. I heard Joseph Campbell (when asked what we can do to help the world) say, "become more alive...the world is a wasteland and when we become more alive we inspire others to do the same." Having lived a life of uncommon hardship myself, I believe that my choice to live and strive for depth and beauty is indeed exactly what is needed.
ReplyDeleteI can tell you my story of a million and four un-triumphs (yes I realize that would be failures, but it's kind of hard to say) but triumph in the end. I was un-triumphant with Phenobarbitol, tegretol, keppra, topomax, lamictal, neurontin, vimpat and one other drug whose name I can't remember. I was also un-triumphant with the low glycemic index treatment, alternative medicine and acupuncture. I had highly-refractory epilepsy; that is to say that nothing worked to stop my seizures. I have had more than 1,000 complex partial seizures and almost daily simple partial seizures. I really had no hope for it ever ending for 19 years. But two years ago, I had a right anterior temporal lobe resection (I had my seizure focus--nearly 5 centimeters--cut from my temporal lobe). I am lucky enough to say that I have been seizure-free since and I am SO grateful! I never thought I would be a triumph story, and in some ways I have survivor's guilt identifying myself in that way. But I also remember when I was in the midst of it all that triumph stories did give me some hope. Good luck to everyone! You are not alone on this journey.
ReplyDelete~Julianna
Thank you for this beautifully written post. I love you and your family very deeply although I am only a reader of your words. You are an incredible example of a human being.
ReplyDeletedear anonymous,
ReplyDeleteblush.
Dear Christy, thank you for this entry. It really gave me new perspective to this dire life of my son, and hope that one day epilepsy would be only memory,not only for my son but also for all those who suffer from this terrible plague.
ReplyDelete