Sunday, June 12, 2011

Back in Business

Christmas 1996 Jeff insisted we should buy a computer for a family gift. I resisted because my tendency was to not give in to buying new things just because they were the latest and greatest. I remember having the same attitude about cordless phones until we moved into a tri-level house with three kids! Jeff encouraged me to explore the computer. First of all, I didn't have time, and secondly, wasn't it ok if there was one thing I couldn't do! HaHa ... I soon accepted a position with Noven Pharmaceuticals, and they placed a hand held computer in my hands. In other words, I was being forced into the technological world I had escaped until now. I adjusted and even enjoyed less paperwork. After six years, I decided it was time to work full time. In the last half of the 15 year run of college tuition we had with our four children, (and that didn't include two daughter's weddings in the first eight years, and Anna Grace's freshman year overlapped Joseph's senior year), I knew I had to step it up. The manager that interviewed me asked me what I considered my greatest weakness to be. I came clean and confessed "computer skills." But she hired me anyway, and my confession soon became a thorn in the flesh. Early on I got realigned to a different district and my new manager had a teaching background and he taught me a crash course in computers 101 and 102! I could cut, copy and paste with the best (not really with the best, but at least I didn't dread the idea of opening the once dreaded laptop with this e-mail driven company). After the five year mark with Covidien I found myself on FMLA since my speech had not improved but continued to digress, still with no diagnosis. Jeff came home one evening with a dry erase board and although thoughtful, it was not quite the answer for a verbose female. An Ipad was the next step, and quickly became my new best friend. My fingers flew all over the modified keyboard and I was able to reconnect with my family and friends. I could talk on the phone some, and text, yet not in normal Nancy style. Until November of 2010, I could write and answer e-mails that took the place of days of what had become normal by cramming the most I could in a 24 hour period. First I lost the use of my index fingers, but not to worry because I had full use of my third, fourth and pinky fingers and didn't experience any less ability to accomplish whatever I needed or wanted to write. I had started blogging while Jeff and I were on a trip to Colorado in August and had more ideas of things I wanted to write than I could get done. By Christmas I was limited to two fingers per hand and had to position myself to use them effectively. My last strategy was knuckle typing with my pinkies and the drawback became weakness in my shoulders to support this effort. I chuckle at the many ways I tried to prolong the use of my Ipad to communicate. In March I started a post that I didn't finish til the end of the month. I had to break up with my cool technology that got lots of attention from adults and children. Now I face the greatest challenge by far if I want to continue to communicate. With no ability to speak and no use of my hands, so sign language is a bust, I am left with the option of using my eyes gazing across a keyboard to type. I am thankful for the technology that created this communication device called Ecopoint. It has amazing capabilities that I have just begun to learn, but with only one rep servicing the entire state I have to wait my turn for tutorials with Jennifer. In fact this is my second attempt to complete this post. I "gazed" three hours only to accidentally erase my thoughts. I have no words to express my frustration. I vowed I was finished blogging, but being unable to use my Ipad effectively March through April, I composed so much in my mind and am determined to put pen to thoughts. Communication is sharing, and something I miss drastically. I have so many questions to ask and so many answers to give! (Like when did Pizza and wings become a combo? Pizza and salad, yes, wings and potato salad, slaw, or fries, sure. But pizza and wings? Not so much)! I am comforted by the fact that I have talked in great detail about that which I considered important, even to the degree that I became the brunt of jokes for talking too much! The benefit now is that Jeff, our kids, my family and friends know what and how I think so my input still is considered. I am reminded of a scene from the movie Mr. Holland's Opus. After learning their son couldn't hear, with clenched fists pounding the air and feet stomping the floor, Iris exclaims, "I want to talk to my son!!!" I completely share her sentiment. I want to talk to Jeff and my kids. I want to read stories to Hudson and Hamilton. I want to continue mothering in the fashion that requires more than a word or sentence here and there. Living with ALS doesn't always bring out the best in us. I think I will scream (if I could) if I hear "I don't know what you mean" one more time! And I know Jeff thinks "really, Nancy, you think I understand what your eyes or groans mean?" Some of those moments have led to tears, complete exasperation, and even a fist in the sheetrock to be completely honest. To add fair balance, living with ALS brings out the best in us as well. Somehow we get past what seems in the moment to be unbearable and move forward. Jeff and I have lived with the understanding that if we were going to be at fault, which of course we would be at times, then we preferred to over communicate rather than under communicate. I am so thankful we did! If you are waiting for the perfect opportunity to communicate love, instruction, forgiveness, excitement, or pleasure, what are you waiting for? Select what means of communication you prefer and get busy!!


  1. Thanks, Nancy, for putting things in perspective.
    Mark Edge

  2. Precious post, Nancy. I love "what are you waiting for?" It's like you're writing to ME! Love you lots, & pray for you that much, too.....


  3. So glad you are back in business. What an inspiration you are...I love reading your blog. I feel blessed, refreshed and amazed. God bless you...will continue to pray for you and your family.