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I was delighted when Mary Klenke of The ALS Association, South Texas Chapter, approached me about sharing my experiences with ALS in their upcoming newsletter. I'm still not sure what I want to say or how I want to say it, but I am sure of one thing...I don't want this to be a "poor me" kind of story. I want to share my thoughts and experiences since being burdened with the "*#&!" disease, and hopefully get a smile from all who read this.
The first and foremost thing I have always believed in (yes, even before ALS), is always keep a positive attitude. I am blessed to have an incredible support system that encourages every minute of every day. I have a wonderful husband, Terry, of three years, who keeps me laughing, my three children, who keep me laughing, a loving family that keeps me laughing, good friends and co-workers that keep me laughing, and an incredible employer that doesn't always keep me laughing, but keeps me employed!
The second thing I believe in is that God gave us all the ability to make choices. After all, isn't that what make the world go 'round? So, I could choose to let ALS consume my life, or I could choose to let it be a part of my life. I chose the latter, although I am in a power wheelchair and on a BiPap at night, I can still drive to work (and to the mall!) and do almost all I want to do...I just have to them a little differently.
Now that we had a diagnosis, what next? Thank goodness for support systems because mine started to kick in immediately. I received flowers from family and friends. My house started to look and smell like a flower shop. The phones started ringing and my kids started researching. We were on a mission. My daughter Jennifer, age 23, put me in touch the ALS Association. My 20 year old son, Matt, assisted Terry with the
care giving, and my youngest son, Evan, age 18, recruited me to talk about ALS with his Peer Assistance and Leadership class at his high school, but it was also time to get serious about the "adaptive equipment." I wanted no part of any of it! I didn't care how badly I needed that foot brace...I only tripped occasionally, and I didn't need that walker, and there was no way I would even look at a power wheelchair, much less spend the majority of my day in one! And sleep with that BiPap mask on? How is attractive is that?
Well, I did finally pull the prescription for a foot brace out of my purse. I'd been carrying that around for weeks. Shortly after I got the brace, I started using a cane to ease Terry's mind. The walker was a surprise "gift" from my family (that surely wasn't on my wish list!) and to start off the New Year, I got my very own royal blue power wheelchair! I can still enjoy doing things with kids like having races with my sons (power wheelchair races, that is) and my nieces and nephews love going for rides in my lap. My cat wants no part of any of it. I can go about anywhere I choose and I'm the only one that doesn't get that tired!
In closing I would like to say dig down deep and welcome each day with courage and strength to face whatever ALS throws your way. Some days will be good and some will be bad; but remember...you have a choice. Everyone has bad days once in a while. Make life easier on yourself. Don't just live wiht ALS, laugh with ALS!
And a good sense of humor doesn't hurt!
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