by Joe Woodruff
When I was a small boy growing up in California, I just loved to catch butterflies. My mother would give me one of my grandmother's empty apricot jelly jars in which to keep my butterflies. My grandmother canned enough apricot jelly each year to feed the entire Pacific fleet. I would punch a few holes in the top of my jelly jar so that my butterflies could breathe and I would also put a little grass in the bottom. After all, they needed a soft place to sleep and something to eat.
Then I would set out on one of my great hunting expeditions in the orchards around our home. Always with my butterfly net and one of my grandmother's empty apricot jelly jars in hand. At one point, I had quite a butterfly collection. They're such beautiful creatures. I wonder where they have all gone?
Sometimes I would spend hours just watching the butterflies in my jelly jar that I had caught. They struggled so to get out. A struggle I never really understood until now. But no matter how hard they struggled to get out or how hard they fought, there was just no escape. They were forever trapped!
My butterflies always died. But what I only now understand is that they would rather have died in the struggle trying to escape than to be forever trapped in my jelly jar. They must have seen their lives as over. That life was simply no longer worth living. A choice that they alone made. I believe that my butterflies having once been so free just couldn't accept any other kind of a life. I now understand why it was the only choice that they could make.
I understand because just like my butterflies, I too am trapped in a jelly jar of my own and for me there is also no hope of ever escaping. Like my butterflies, I have only two choices, I must either accept my new life or I must accept death and just like my butterflies the choice is entirely mine.
But if I am to be able to accept my new life, a life that must forever be lived in a jelly jar, I can only do so by finding a way to make it a meaningful and rewarding life within the limitations and confines of my jelly jar. To be able to do that, I have had to find a new dream for my life. A dream worth living and struggling for because without that the only alternative would be to accept a meaningless life and ultimately my own death. You see, just like my butterflies, I can always choose my own death. I can always stop taking my medications and simply wait for the inevitable life-ending lung infection.
A choice I struggle with every day of my life with no hope of ever escaping the jelly jar in which I now live. No hope of ever getting any better. No hope of ever again being able to walk, talk, or breathe on my own. Even so, I don't believe that I am to have only a life just simply existing. I believe that one of God's greatest gifts is the gift of life, a gift that is yet to be taken from me. I know that God would not want me to live the rest of my life simply existing or to give into my illness. I think it matters far less the kinds or severity of the challenges that we each face in our lives than how we choose to deal with them.
My butterflies were able to breathe through the holes that I punched in the top of my jelly jars. I breathe with the aid of a ventilator since I long ago lost the ability to breathe on my own. My butterflies never would eat trapped inside my jelly jar. I'm not really sure why. Maybe they just couldn't be dependent on me for their food and maybe just being trapped in my jelly jar made it impossible for them to do anything except struggle to escape. I can't eat on my own either so I must depend on my nurses to feed me through a tube in my stomach.
My butterflies never did talk to me, but that's all right. I lost the ability to speak several years ago and now am only able to communicate through a laptop computer equipped with a very sophisticated communication program. I operate the system through a special sensor held by a strap on my forehead that detects the smallest electrical impulses in my muscles enabling me to stop the program's automatic scanner on the letter, number, or word of my choice.
The jelly jar in which I now live is a life that will forever be spent in an electric wheelchair with my ventilator mounted in the back and my laptop computer on the front. I think the medical terminology is, I'm a quadriplegic that is unable to breathe or speak on his own. You'd have to ask my doctors exactly what they call it. I don't really much care what you call it, I will still forever be trapped in my own jelly jar.
You see, I have ALS, better known as Lou Gehrig's disease after the famous New York Yankees baseball player who died of the disease. ALS is a terminal neuromuscular disease for which there is now known cause or no known cure. Because it leaves it's victims literally trapped inside their own bodies unable to move, breathe, or even speak, it has often been called the cruelest of all diseases.
Each day my nurses dress me, put me in my electric wheelchair and then in my office where I spend the day and most of the evening working with my office computer system. Trying to build a new business and with it a new life. Unable to move, speak, breathe, or eat on my own. But unlike my butterflies, I believe that life is very precious and that it still has a great deal to offer even for someone with my physical limitations. Life after all is what we ourselves make it and I intend to make it the very best it can be.
My butterflies chose death rather than accept life in a jelly jar. I chose life and with that choice came a tube in my stomach through which I am fed, a ventilator through which I am able to continue breathing, an electric wheelchair where I will live the rest of my life and a laptop computer with a communication program which is my only way of communicating with what I now see as the outside world. A world in which I am determined to remain an active participant.
Despite my physical limitations, I truly believe that my future is still unlimited provided I can accept a life that will forever be lived trapped in a jelly jar. Provided I use my God-given talents and the strength he has given me to build a new life for myself and those that I love. Provided I don't let this illness beat me emotionally or rob me of my spirit or my will to succeed.
Most people look at me and see only insurmountable obstacles. They see only an electric wheelchair, a ventilator, and a computer through which I speak and run my business. But if that's all they see, then they aren't seeing the real me. I continue to believe very fervently that my future today is just as unlimited as it was prior to my illness. What you need to understand is that I do not see myself as handicapped or even disabled, just severely inconvenienced.
I see my physical limitations only as challenges to achieving my dreams. While the road to achieving those dreams is a difficult one, it is nonetheless the road that I have chosen to travel. I have had to work harder than most and stay focused on my objectives. I have had to fight depression, enormous frustrations, and deal with the pain of friends and even family that no longer visit or call because they can't accept my illness. Was it something I have done or is it the pain of seeing me like this and remembering happier times? I suppose I'll never really understand.
Perhaps even more importantly I have had to ignore those that said it couldn't be done. That my dreams and the goals that I set for myself were no longer achievable. That I should just accept death as my only inevitable alternative. That I should give into my illness. But isn't death inevitable for all of us, I'm no different. I may well forever be trapped in this jelly jar. I may even die tomorrow. Those are all things that are out of my control. But if I am to die from this illness, then I have decided that I will die from fighting the fight. I will die from reaching for the stars, reaching for my dreams and trying to achieve what others see as unachievable.
I still believe that my future is limited only by my dreams and my determination to make them come true. You see, I also believe that as God closes one door, he will surely open another. We need only the courage to dream, the strength to believe, and the faith to take the first step. The strength that God has given me to challenge my illness was God's gift to me. What I do with that strength will be my gift to God.
Deep within my heart of hearts, I know that for me the best in life is yet to come
MGM
© ALS Independence 2003-10