Dear Dr. Archer,
I joined your Twitter last night. My story is that both my son and I have epilepsy. My son had epilepsy that stopped being treated at the age of 11 because we were told he would outgrow it. The epileptologist told my son's neurologist that he had already outgrown the seizures, despite abnormalities on the video EEG.
We spent three years going to doctors, having differential diagnostic testing done. MY son become depressed, as 30-60 percent of people with epilepsy do. His next epileptologist finally placed him on medication, after more severe seizures continued.
He had lost skills, such as his musical skills, handwriting and learning. He started to improve, but not all seizures went away. Adding another medication caused more depression. He tried twice to commit suicide as we battled depression. Self medication with drugs started in his late teens.
He was diagnosed with schizophrenia. He worked hard for sobriety, and actually started to win that battle, but then relapsed. I was diagnosed with epilepsy at age 42 after being misdiagnosed with Sinus disease. I have had two unessential surgeries, with nerve damage in my face from the second surgery.
My migraines remain constant, but they are better now that I have the appropriate medication. I have psoriatic arthritis, epilepsy and depression, but not as badly as my son.
We lost my son, Sam, to a fourth suicide attempt at a public event at a water fall in May 1, 2011. I have started a nonprofit called "Preventing Teen Tragedy" based on the name of his t-shirt company when he was 16.
He advocated for awareness of teen and young adult depression. He and I went to Washington DC to speak to Congress about epilepsy every year when he was 11-16. Now I am carrying his mission on without him. Please help pass the word, Dr Archer.
Please accept my deepest, most sincere condolences on the death of your beloved son. Some folks do indeed have it much harder than others, and you have been through so much.
However, they say we're not given more than we can handle, and Ginny, you are living proof. Mother Teresa said, "I have found the paradox that if I love until it hurts, then there is no hurt, but only more love," and you are proving that by giving to others through your son's life.
I can only imagine the sorrow and anguish you experienced losing your son, and you could have succumbed to depsair, but you didn't. Through Preventing Teen Tragedy
you are keeping Sam's memory alive, and thus helping countless others in the process. How brave and utterly selfless of you.
I received a letter from Derek, who lost his brother, Ryan. He, also, stepped up to the plate to make sure other children did not lose their lives to sexual predators. His letter, Ryan United: Helping Keep Communities Safe For Children
is to help others going through the torment his family experienced.
And as I tell MEW in I Died The Day My Son Died
, the best way to honor a child is to live life the best you can and help others all the while while honoring their memory. You are doing that, Ginny. You're an amazing woman and mother.
Sam sounds like he was wise beyond his years, and perhaps that was because of his suffering. It was not in vain, though, Ginny; you are seeing to that.
I will end this with one more quote, that again, sums up exactly what you and Sam have done: "The purpose of life is not to be happy - but to matter, to be productive, to be useful, to have it make some difference that you have lived at all." ~Leo Rosten