Thursday, February 2, 2012


February 13, 2012

My weeks seem to be laid out like usual. Monday and Tuesday are low key from the busyness of the later portion of the week. I have to measure activities since it is no small feat to get me ready to go anywhere. Midweek Linda and I join other family and friends at Community Bible Study. We forfeit the small group discussion and meet up with the clan for lecture and lunch! Yesterday the group of girlies included my daughter Rebekah and my grandson Hamilton, my sister-in-law Sharon Chandler , my BFF Linda Holder, and my nieces Ashley Philbrick., Bonnie Chandler, Ashley Chandler and Katie Mitchell- well Katie isn't blood related but she is practically my niece! My latest practice is to allow Linda to eat at normal time and take my meal to go since it can take quite a while for me to eat. The girlies start comparing mom battle stories, or best sales on clothes, or miles run this week, paint colors, glee about new babies... whatever topics are pressing at the time. I love hearing all the conversation, but at the same time it makes me sad...bittersweet. The fact of realizing things I won't ever do again at times are more than I can bear. How is it that the very thing I adore can lead me down a path that leaves me totally undone! I wouldn't have it any other way nor do I want certain topics taboo because I am present. That would be even more sad to me. At times I can feel ok about all the fodder around the table but other times I can't control the heart break and have to give in to tears. Yesterday was one of those times. I cried all the way home. I kept on picturing in my mind Hamilton coloring and I could neither color with him or even tell him how good he was doing! (even if he didn't stay in the lines and had as much marker on his hands as on the paper!)

We have always been an open book so why stop now? When I hear silence from the kitchen I know they are talking about me. I was born but not yesterday. Yet it's still difficult to be absent from important topics. As a total engager I've had to learn the art of being a bystander. Even if I am in front of the eyegaze machine in conversation, the topic has often taken a new direction before I can "gaze" my contribution to what's being said. In April of last year Jeff, Abby and I were asked to represent Arkansas and other men and women from all the fifty states on Capital Hill to plead our case for more funding toward ALS research. When Abby and Jeff went to get us registered, Abby returned taken back by so many ALS patients driving their motorized chairs and having conversation . She said, "Mom, if you could just talk!" When Anna Grace steals a few hours away from college, she lays across my lap, puts my hand on her head, then pats my hand, imitating behavior between us before ALS. She whispers, "don't be sick Mom, don't be sick." Each child has it's own pattern. Joseph drives out of his way for a brief visit. It usually consists of his signature hug and shoulder squeeze. Next he raids the fridge for lunch or makes a quick pb and j, depending on how much time he has. When its time for him to leave, he repeats the hug ritual again. Rebekah asks her registered nurse question, "Mom, have you experienced any changes since I asked you last?" After hugs they all say " I had fun today." They each say "Love you Mom" as they exit the room. Hence, bittersweet. Who came up with this word? Isn't it a conflict of interest? How can a single word express two totally different thoughts? A picture I have in my minds eye is the bottom of the candy jar all alone. You know the bag of hersheys mini candybars? At least at my mom's house and Jeff's mom's house there were always semi sweet bars left behind til some had such a strong craving and would succumb to the lone bars left. ( Is it just me or are there others who will confess to instantly thinking you are supposed to have something in your mouth as soon as you get to your moms house ) ?! The few candy bars could remain months later...they showed signs of drying out by the chalky appearance on the edges. Is that what I have become...the dried out semi sweet candy at the bottom of the jar? Just another place ALS has led me.

Sunday, January 8, 2012

Just a Thought...Six

January 16, 2012

December 2010, I broke two suggestions Suze Orman has written in one of her books. First was to complete all shopping by December 10th. Second was to stay away from favorite shops where it is so easy to get caught up in emotional spending. I violated both. Not trying to sound dramatic, but I was dramatic! I completely thought that would be my last Christmas. After diagnosis day in early July, I continued to run, mow the yard, and work in my flower garden. I recall one Saturday morning I awoke early and went to tackle the shrubs. I lasted four hours and think it was my last time to do such a thing. In August, Jeff and I went to Colorado for a week in what was a very special place for us in many ways. The day before we left I did the typical errands prior to traveling. I hadn't begun to use a walker yet and this trip let us know it was time. Before the trip I had only fallen one time. It was so small I didn't tell Jeff. During our week with Sharon and Winston, I experienced what let us know it was walker time. In a split second I fell backwards on the wood floor in the lobby of the Stanley Hotel. Ouch!! Back in Little Rock I turned over my keys, and began using the walker. Even using the walker I fell several times. When I think back I am amazed I didn't face injuries other than bruises. This disease changes over night. Literally. I have watched my body transform in ways I never expected unless I lived into my late eighties or nineties. I can't make my neck muscles do what I want anymore which has caused me to loose control of my head. This seems to be a hard one for me. At times, in the motorized wheelchair, I can still raise my legs. We have to chuckle at that.

As Christmas approached, I bought way too many gifts! In fact, if you didn't receive a present me, you should be offended! Gifts under the tree turned into packages in the middle of the family room, along with the oversized tree Jeff selected. As Minnie Pearl used to proclaim at the start of each performance, "I'm just so PROUD to be here"! I truly thought of that phrase during December activities, and was so thankful I was able to enjoy the many precious moments with family and friends. Here's to 2011!!