Living with ALS

John Anthony Eannel, age 45, married, and a father to 3 beautiful children (Austin, James, Alexa) was the happiest dying man I will ever know. Why do I say that…because even though he knew his life was coming to an end, even though he knew he would never see his family again, even though he may have been suffering, he always smiled, and tried to make US laugh!

John did not want sympathy, he wanted life, he did not chose to have ALS it choose him. John insisted on staying active as long as possible. John, even though walking was shakey, coached Austin’s basketball team, coached Jame’s baseball team - in a wheelchair, and gave Alexa rides.

The most awesome vision I carry with me is from my son Michael’s baseball game. John was in his wheelchair watching Michael’s game and Alexa ran up to her daddy (only 2 1/2) to give him a hug, but instead, she threw her arms around the wheelchair - as if she consider “it” a part of her father. It brough tears to my eyes, and still does.

Alexa was an infant when John started to have falling spells. John soon could not control his leg from spasams. Shortly thereafter, he could not hold keys or open doors. After many doctor visits, tests etc. the professionals concluded it was ALS! Ironic, John is a hugh NY Yankee fan. It is appropriate he would die of a disease that took the life of one of his favorite baseball players. Alexa was only 6 mths old when John could not hold her securly in his arms. It broke his heart.

He continued to be active, and a part of the children’s daily lives. His wife Rose however had to run the roost. John was soon confined to his wheelchair. It was a tough on all of them. But John worried, not for himself, but for the family. How were they going to react. Would there be enough money for them. Who will help Rose take care of things, and will they remember Me.

John and Rose thought hard and long when they decided to call a doctor in China who believed in stem cell research. We had fund raiser as the cost was over $30,000 - we raised. People came to his side. They loved, and still do love, him. They admired his courage, strenghth and his ability to laugh. Three years in a row we all put together a golf tournament in honor of John - 125 golfers - one year it was pouring rain! But the show went on. Supporters came from CT, NY and FL just to golf with John. He would drive around in his wheelchair making everyone laugh. It was a time that I can honestly say, I felt sorry for him, and he did not want me or any of us to feel that way. Alexa was 4 when her father died on October 16, 2007. The day they all refer to as “daddy can walk again, and is in no more pain.”

We visit his grave site to reflect on our time spent with John. We have faith that John is God and is in very good hands. He wanted to see his brother and grandparents, and was looking forward to walking with them - walking again, what a thought.

For those of you who have this disease, my advice to you is live happy, smile always, and remember that there is a better place in heaven where you will be whole again. Stay strong as John did. He left this earth on his terms, and we admire him for how he was, how he handled this disease, and how he made us all feel - inside!