Moms of Epilepsy
Jody – Mother of Tyler
I am a "mom of epilepsy." Typical for a mom of a child with a seizure disorder, my "Mom's Story" is one of conflicting emotions—love, panic, happiness, frustration, hope, fear, joy, anxiety, pride, helplessness, strength and despair.
Unfortunately my "Mom's Story" is also one of profound sadness—an ending that is every mom of epilepsy's worst nightmare.
My son Tyler was born April 21, 1979. His delivery into the world was a difficult one and Tyler was deprived of oxygen at birth. As he was brought into this world my newborn son showed sheer strength and determination—to dig deep and "rally"—to live despite the odds.
Although he showed no obvious signs of brain damage, Tyler struggled with sensitivity to loud noises and crowds, difficulty managing changes in routine, and at 10 years of age was diagnosed with epilepsy. Throughout the adolescent years Tyler's seizures were fairly well controlled with medication. He did however suffer the medication's side effects of fatigue, trembling hands and the stigma of a body occasionally out of control. Of course we all suffered from the fear of the next seizure to come.
During this time Tyler enjoyed sports of all kinds, especially hockey. True to his size and determination, his nickname was "little digger." When the team was down, he would tuck one side of his hockey jersey into his pants and tell the boys, "it's time to rally!" He dreamed of playing in the NHL or being a sports announcer having an uncanny ability to recall stats of many of NHL's hockey greats. He did the things all young boys do—hang out with friends, chase girls and play video games.
During his teen years Tyler struggled with a loss of control of his seizures including a few "near death experiences" followed by the inevitable isolation associated with being very different from the rest of the guys. Friends weren't so comfortable with this, girls weren't so interested and playing sports was difficult.
Tyler's first year in university was marred by absence episodes that destroyed his ability to keep up with the curriculum. Even with encouragement, Tyler was reluctant to seek help and eventually dropped out. Being from an agricultural background, Tyler also dreamed of being a farmer. He loved harvesting and took great pride in a successful crop. With his seizures becoming less in control, another dream was shattered as operating farm machinery was just too dangerous for Tyler and those around him. He lost his driver's license and his independence as a result of uncontrolled seizures. More medication helped with seizure control but the inevitable side effects made life even more difficult.
With each seizure and each lost dream, epilepsy took over Tyler's life. Alcohol became the medication of choice to help deal with life's disappointments and Tyler continued to isolate himself more—falling into depression.
Stress and fear were common feelings for all of Tyler's family and friends as we struggled with how to help him. It's difficult to be strong and rational when you are consumed by despair. Several times Tyler received help for his depression. He pursued addiction counselling and had many family and friends supporting him in this endeavor. He pursued medication options for better control and was investigating the possibly that brain surgery may help with seizure control. Tyler seemed to be taking back his life!!
Sadly a release from seizures, depression and addiction was not to be. We all experienced the painful disappointment when professional intervention lacked the skills to manage a young adult with a seizure disorder complicated by depression and alcoholism.
Ten days before Christmas, Tyler died during a seizure. The dreaded phone call rang out and our world crashed!! That terrifying seizure game of "russian roulette" finally won.
This obviously isn't a happy ending story providing comfort to other moms of epilepsy. I am all too familiar with the anxiety of a phone call not answered, the middle of the night panic when you feel something is wrong, the devastation as you watch your child struggle, the desperate attempts to get the right help, and the disappointment when the health system fails. There isn't a day that goes by that I don't grieve for my only son and am stung by the raw guilt of being unable to help him.
I am deeply sorry for any added anguish that my son's story brings to others living with epilepsy—my heart goes out to you—but this is the reality of epilepsy. Sometimes epilepsy kills.
I am continually amazed by the young people featured in the Epilepsy Canada newsletter—their ability to manage their seizure disorders, take control of their lives and even to host remarkable fundraising events. Each time I read about one of these strong youngsters I feel a sense of pride for them as I know what a struggle it can be to live with epilepsy. Yet sadly I also feel an ache in my heart for my own son. Tyler too was a remarkable young man. He too struggled with the trauma and stress of living with epilepsy and I remain in awe of his courage and strength. No matter how big the wreck, Tyler jokingly referred to himself as being in "peak physical condition." No matter how many times he was knocked down by a seizure, Tyler "rallied," picked himself back up, dusted himself off, flashed his big smile and sparkling licorice eyes and tried to get it together again.
Eventually it all became too much. Epilepsy tortured Tyler, stripping him of his self-esteem, his hopes and dreams, his health and happiness—and finally, his life.
I am hopeful that someday thoughts of Tyler will always bring a smile to my face instead of tears to my eyes. I wish to remember the hockey crazy kid who cheered religiously for the Toronto Maple Leafs no matter how much his team struggled. The witty jokes that I was often the brunt of. The perfect birthday card carefully picked. So close to his sister Sharla they were affectionately referred to as "Pete & Re-Pete." Competitive golf games, ribbing Poppa so effectively that his golf game fell apart and allowed Tyler to take the lead. The love of a good bbq steak—blood rare!! Pride in a job well done. A love of farming so deeply engrained that dirt ran in his blood. A competitive card shark who loved to take on any opponent in a game of crib. Absolute unconditional love for his nephew Keithan. And of course that big smile and those sparkling licorice eyes.
For all those who suffer with a seizure disorder, I pray you will overcome the stigma and challenges that rob you of a full life. I wish for you better care—improved training for all health professionals especially those in rural Canada to recognize issues that affect the quality of life for those living with epilepsy and the skills to react to intervene; pathways to access Seizure Disorder Clinics with the expertise to address seizure control—to be available when seizure control is good and to be urgently accessible when life rockets out of control; multidisciplinary teams with the knowledge and tools to provide early intervention to prevent and treat depression and addiction so commonly associated with epilepsy; advanced inpatient care and community support for mental health issues; and support and guidance for family members who struggle to do the right thing.
In memory of my son Tyler, his strength in adversity and his ability to "rally" in spite of it all, I hope all reading this will donate to fundraisers such as Katie's Run in support of those living with a seizure disorder. Please help fund research and advanced care that will help those with epilepsy live safe and happy lives, to control this devastating disease and eventually eliminate it.
Tyler's struggle ended. The angels wrapped their arms around my son and lifted him up to heaven, into God's warm embrace—no more seizures—peace at last!
This mom's wish is that my son Tyler's heavenly star will help light the way to uncover the brilliance
that will end epilepsy—forever.
Jody Rice, proud mom of Tyler
Southern Saskatchewan
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