TOUCHED BY LYME: A mom appreciates Ally Hilfiger for “getting it”
Yesterday, I posted my review of Ally Hilfiger’s book Bite me: How Lyme disease stole my childhood, made me crazy, and almost killed me. Today, Lisa Kilion, the mother of a teenage boy with Lyme and PANS/PANDAS, thanks the author for writing the book.
AN OPEN LETTER TO ALLY HILFIGER
I just finished reading Bite Me and now I feel as if I’ve met you. Gosh. I wish my son could meet you. You’re young and gorgeous (even he would agree) and I’m sure, sociable enough to put him at ease and he would like you if he didn’t feel too anxious that particular day and could take the earphones out of his head. If he were halfway himself for the day, he would be able to relate to you, because of your sense of humor, warmth and positivity. And because you get it.
You have a unique understanding of the child who suffers from Lyme, an insider’s empathy for the teenager who tries to rebel despite the Lyme that creates an ultra-dependency, an adult’s experience with the multi-faceted evil world of Lyme.
You have been through incredibly much in your life and so has my teenage son, and thousands others like him. I can name a dozen friends right now who have children struggling with the same Lyme symptoms–brain fog, fatigue, depression, joint pain, memory loss. Children who have expressed suicidal thoughts. Some children who have acted on them.
But you, Ally, have such drive and a desire for survival. I wish you could inject that into these teenagers and young adults who suffer from Lyme and need someone other than a parent to renew their hope for recovery.
Teenagers just want to have fun and they don’t equate depriving themselves of pizza with being healthier. Especially when treatments don’t seem to be working. They fear the anxiety that divides them from friends while they grieve the friends who have slipped away because of the effects of the disease.
Daily, I read about children who are homebound, teens and young adults who have graduated from high school late or received GEDs or who cannot graduate or attend prom or anything else that the world around them continues to do. Life is a merry-go-round and our children with Lyme are the spectators, sitting in the last invisible row, watching the world spin without them.
My son doesn’t care to be an advocate, doesn’t want to write about Lyme or talk about it anymore. He posed for the Lyme Disease Challenge last year, but didn’t this year, despite the fact his PICC line would have made a statement. Frankly, he’s been too tired and nauseated for a long time.
It’s been over six long years of him being afflicted, although he first showed signs when he was 2; he most likely was born with Lyme. He’s adolescent in some ways, much younger in other ways and vastly experienced in his suffering.
Much of your book really moves me. Two parts that stand out are the foreword and a page much later in the book. The foreword, written by your father, had me undone. I was sitting in the hair salon with dye in my hair when the tears began to spritz from my eyes. As I plunged into your father’s grief, I relived our own story. I felt that silver connection that has wound me to others in this topsy-turvy community of survivors who fight for their own lives or those of their children.
My friend Katie and I both have been reading your story and we recently compared pages. She texted me: “I think you will have the same ‘YES!!!’ response at page 204 as I did.” OMG–Yes! For that is how I feel.
This disease that abides in my family, that I probably transmitted to those I love, has inspired me to reach out and connect, to help make some changes to the world. I have to find a positive meaning from all this despair and pain. I have grown, but I’m an adult and I’ve fought to find control, answers, a lack of helplessness. But as for my children…their growth will come later, hopefully.
You write eloquently, with honesty, without fear. Your message that “positive energy attracts positive energy” drew me to your story. This positive energy is what has gifted me with friends like Katie and other special moms.
I fret that my child does not have a lot of positive energy lately. He does have love and parents, as well as doctors, who understand his pain. We encourage fun times, but any expending of energy ends with him bedridden for a few days.
My son has taught himself to play electric bass. He and his sister have formed a band and practice one day a week. But intense fatigue and nausea have derailed school for now. He is bright and creative but melancholy, especially when he suddenly has trouble learning because of the Lyme.
If you flew into NY to meet with a group of teenagers, I doubt that my child would even want to go. He has way too much negative energy. I wonder how to bring home more spirituality when he neither feels well enough to participate in anything new, has too much Lyme anxiety to experiment, nor will venture away from his safe place simply because he’s 15.
But how I wish you could rub off on him! And how I wish everyone in his school district and everyone in our extended family would read Bite me: How Lyme disease stole my childhood, made me crazy, and almost killed me because it validates the challenging experiences we have in our own home, offers hope, and talks about healing.
Ally, you are a true warrior, with the heart of a caretaker and the strength to expose your experience and the weakness of much of our country’s medical system. I thank you for making me cry and smile as I wonder what next we can possibly do to cure us all.
I’m thrilled that at least one family member who has avoided reading about Lyme has agreed to read your book! Person by person, book by book, state by state, TV station by radio show, I know that you are making the difference in this lifetime that you are destined to do.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.