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Edward’s Story

EPILEPSY – INVISIBLE DISABILITIES – “MY STORY” #EpilepsyDay

“Epilepsy” is my “Invisible Disability” and it became a part of my life thirty-two (32) years ago.

This is my story regarding my journey through life with epilepsy:

Hi, I’m Edward Crane. I’m 62 years old and for about the first thirty (30) years of my life, I was healthy, active, and on a great career trajectory. I studied engineering in the U.S. Merchant Marine and traveled the world. Then I worked as a field engineer in the insurance industry in New Jersey and New York. For a decade, everything went well. Suddenly in 1987, I experienced my first grand mal seizure and collapsed at a business meeting in Philadelphia. It was the onset of epilepsy, which changed my life forever.

I continued working for the next fourteen (14) years, but my seizures (which only happened a few times the first year) became more and more frequent. They began to occur monthly, then weekly, then daily over the years – eventually they took control of my life. In August 2001, I finally had to go out on disability from my 24-year career because of my epilepsy. This was a profoundly a very sad moment in my life.

While out on disability, a friend showed me a TV program featuring the nonprofit organization, called Canine Partners for Life (“CPL”) (https://k94life.org/seizure-alert/). It detailed the wonderful work that “Assistance Dogs” can do for disabled individuals, like retrieving objects out of a person’s reach, opening and closing doors on command, turning light switches on and off, providing balance and support, providing stability on stairs, helping bed-dependent individuals move, assisting with dressing and undressing, taking purchases and wallets to a cashier, alerting people to imminent seizures and cardiac events, and much, much more. This got my attention and I contacted CPL and arranged an interview.

The process of seeking an assistance dog was then interrupted in December 2002 when I had brain surgery performed (on the left temporal lobe of my brain) to reduce the frequency of my seizures. The procedure helped, but it also impaired my short-term memory. Fewer seizures were a step in the right direction as a result of the surgery, but life was still a major daily challenge for me and I needed help.

After recovering from surgery in 2003, I went back to CPL and they introduced me to a female black Labrador retriever named Charity, who would be my home companion dog with the ability to alert me of my oncoming seizures. Amazingly, at our first meeting, that Charity warned me of an oncoming seizure about 20 minutes in advance of it’s occurrence. I laid down on the floor and she waited the seizure out laying by my side. I knew at that moment my life had just changed for the better. It was a new beginning for me. Our relationship as a team was truly amazing, my life seemed normal again. Charity and I were together for about eight (8) years before she passed away in 2011. Again, my life took a step backwards without my special dog by my side assisting me.

In June of 2012, Canine Partners for Life matched me with my successor dog, my Assistance Dog, named Alepo. He is a cream Labrador retriever who warns me of oncoming seizures with complete accuracy and reliability, quickly alerting me and getting me to react. He isn’t satisfied until I lay down on the floor, so he can place his front legs across my waist, and he won’t let me up until my seizure is entirely over. He gets up and licks my face, signaling that it’s safe for me to slowly return to my feet. My life again, was restored to a level of normalcy for me. We were together as a team for six (6) years. In 2018 my canine partner Alepo retired and I was subsequently matched with a successor dog. My current canine partner is named Zern. He is a 3.5 year old yellow Labrador retriever raised and trained by CPL.

I also have a frequent problem with loss of balance without warning. But my assistance dog wears a harness, which I keep a good grip on, and he provide me the necessary support I need with this daily challenge. This prevents me from falling and spares me many possible injuries and broken bones.

Epilepsy is truly a battle in life, between the seizures, possible physical injuries, chronic head pain, frustration and depression. I am truly a blessed individual, in that I have family members and friends who have helped me and supported me in so many ways, each and every day – deal with my epilepsy. I am truly grateful to my sister and her hubby, who I live with, for being there for me with my epilepsy (May God bless them both). Also, my service dog is my canine partner who is with me, twenty-four (24) hours a day, everywhere I go and provides me all the support that I need. He (Zern) helps me fight this battle daily and has helped restore a level of normalcy in my life – I am truly grateful.

A typical day for me is: I start my day with a one (1) mile walk in our neighborhood with my canine partner. My level of confidence is strong because I no longer have the fear of an oncoming seizure hitting by surprise. It is a great way to start the day.

That one (1) mile walk in our neighborhood with my canine partner and it is truly relaxing for me. I sit down and review what took place in the day, I make some written notes (because of my memory loss) file them and I plan for the next day and the future. I get a lot accomplished most days and I move forward in life.

In my life with epilepsy, I have learned that my family has been there for me and they help me deal with the biggest challenge that I have ever faced in life and I am truly grateful for their love and support. But, it truly is my assistance dogs (both Zern and Alepo) that are responsible for returning a sense of normalcy in my life and taking away the control that epilepsy had on me and I am truly grateful. This has made a difference for me and it is a true miracle.

I shared my story today, because I believe that “Epilepsy Awareness” is truly important. We need to educate the public about all epilepsy and help remove the added stigma and frustration that this “Invisible Disability” inflicts on people, like myself, who are simply trying to cope with the tremendous challenges in our daily lives. #EpilepsyDay

Ed Crane & “Zern”

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