Thursday, February 2, 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
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!!
Tuesday, December 6, 2011
I have a new best friend. Her name is Linda Holder. Anna Grace says she is my “bff” or “bestie”. She walked into our house on March 14 and will remain in our hearts forever. Her work ethic is impeccable. She knows just how to interact or give me space since I seldom get to be alone. She handles the ongoing stream of guests that come on a daily basis. She accompanies us to the ALS center, hair appointments, and even Grandparents Day at Hudson’s school! Both Hudson and Hamilton are on board with her. They refer to her as Ms. Linda…(a term used to show respect for adults involved in children’s lives. Like we taught our kids to say Ms. MaryLee or Mr. Brad. It never seemed right for them to call our friends by their last names but sure didn’t want them to say MaryLee and Brad. A Southern thing for sure!)
Linda and I get along great. Typical of females, we laugh and cry together. Sometimes crying can end up in laughter. She has had a stabilizing effect on all our family. One thing we have tried to do along the way is to forecast what we need to be prepared for next. In the fall of 2010, we had family and friends scheduled to stay with me during the day. As I digressed, it became obvious I needed more assistance than untrained friends could provide.
One crucial symptom was the loss of ability to use fingers to turn pages. I couldn’t finish a book I had started- but worse was the separation I felt from my Bible of thirty years! I hate to admit I have not been a faithful daily Bible reader. I don’t think it counts for the first few weeks of a new year. Every year I tried it until I finally gave up the idea that I could pull it off!
The good news was I had a Bible app on my ipad that I could maneuver fine until I lost ability of hands, fingers and knuckles altogether. Even though I have been able to continue going to Sunday morning worship which has always been vital to my spiritual nature, it wasn’t enough. I missed not having access to peruse the concordance anytime I needed answers to questions, or was simply just interested in how many references a term could lead me to in order to quench the thirst I had when ideas or thoughts required.
Typical to ALS is the need to find new avenues when what was working fine, works no more. One morning, I asked Linda to read aloud Psalms 119. She didn’t hesitate and reached for my Bible. I warned her the condition of the well-worn book was fragile.
Sidenote: I asked her to look at the inside cover. Displayed there were two stickers of a child-like nature from the three-year old class Anna Grace was attending at the time. So many children had the privilege of Ms. Becky Cranford teaching that class for years, including all my four children. Ms. Becky had the unique ability to handle rowdy toddlers and still be fun, too. Naturally, I enjoyed Anna Grace’s sticker contribution to the years of use. Even better was her verbal exclamation, “Stickers from God!” ( Pronounced “G-a-w-d”). That saying continued to be a family favorite!
Linda read the chapter with ease and authority as well. This Psalm had been in my “hall of fame” for quite some time. One summer, Abby and Joseph went together to Colorado, along with other teens from our youth group. Traveling up a fourteen-thousand foot peak included “solo time” to hopefully reflect on life with this Creator of the magnificent mountains surrounding them. I strategically placed a letter in their Bible encouraging them to read Psalm 119. As always, I spoke to them requesting them to see what God had in mind for them to learn.
Thoughts of that circled my mind as I listened for the familiar verses I cherished: Psalm 119:9-11 “How can a young man keep his way pure? By living according to your word. I seek you with all my heart; do not let me stray from your commands. I have hidden your word in my heart that I might not sin against you.”
Psalm 119: 90 “Your faithfulness continues through all generations; you established the earth, and it endures.”
Psalm 119: 105 “Your word is a lamp to my feet and a light for my path.”
As I listened for what I assumed would be pleasing to my thoughts, it happened. What was that? I managed to chase it away but then it appeared again. What seemed to be an encouragement now had become an exercise! The word “consider” was racing through my mind after the 178 verses. I asked Linda to scan the psalm for the word “consider”. She found two:
Psalm 119:15-18 “I meditate on your precepts and consider your ways. I delight in your decrees; I will not neglect your word. Do good to your servant, and I will live; I will obey your word. Open my eyes that I may see wonderful things in your law.”
Psalm 119: 59 “I have considered my ways, and have turned my steps to your statutes.”
I consider God’s ways, thoughts follow easily from my mind. I can’t begin to list them all, but here is what comes quickly to mind: Creative… unbounding love…full of mercy and grace… plan-maker…all powerful and sovereign…protector and healer…provider….forgiving, to name a few.
Considering God’s ways was easy. But the second verse asking me to consider mine posed a not-so-easy challenge. We have a funny saying we use at times that says, “I’m gonna play the ALS card!” Seems appropriate but my mind would not allow me to play it. Since my life has been snatched out of my hands, surely this verse doesn’t apply to me, don’t you agree? But try as I might I felt the need to run my characteristics through God’s grid. “O woe is me!” I thought as I instantly began to have thoughts flood my brain, but not as good as those about God! Again I attempted to avoid the exercise that I knew would not be pleasant.
Determined, I began to face my same characteristics that I had, even before ALS. I dreaded this and wondered why I let myself lead me down such a condemning pathway. I find myself holding on to this life more than I realized before. I mean, don’t we all wish for the time when we shall see Jesus “face to face”? Since this seems more likely for me, I confess that I don’t. What is wrong with me?
I was reminded of a favorite song recently at the life celebration of a precious saint. The title is “Goin’ Home”. The line that struck me was “…there’s an ache in my heart that I can’t bear.” Sadly, I realized I don’t want to go anywhere but here: #1 Ben Hogan Cove, Little Rock, Arkansas…with all my “peeps” around me. I like my life, warts and all! With that confession, can’t I be done? I have just revealed a part of myself that is somewhat embarrassing.
Still, I found it pressing to continue. Even though I can’t speak, my brain is in overdrive! How can I display anger, frustration or disagreement now that I can’t apply the typical female positions for battle? I’m referring to hand on hip while the other is pointing as words are flying at warp speed! If ineffective, I would add stomping off- with additional sound effects best occurring from high heels. A combination might work, but if necessary top it off with a dramatic door slamming!
So you see, as ALS keeps me from responding physically, my mind is intact just as before. Therefore I should admit, along with an earthly desire to remain in the flesh, there are other weaknesses if I am coming clean. Judgmental thoughts still occur even though I know Christ’s teaching on that practice. The old green monster rears its ugly head at times over a number of things. Hearing conversations about very normal things seems to be an easy target for me. Things like future trips, babies being born I can’t hold, simple playing with Hamilton and Hudson-- send me down a path I am certain portrays the type of things I’m referring to. Not the typical bucket-list, but somehow I was forced to realize what is of utmost value. I think the simple things in life have always been first to me.
Jeff and I have other adventures planned but still ones that included children, other family, and friends: A dear friend and I used to plan on going to other countries where our gifts and desires to teach about our Lord could be used… more to Colorado snow skiing…Disney World, and summers at “Nan and Papa J Camp” was always expected by grandbabies. Besides, I felt that the bucket-list seemed somehow self-centered. In the movie, things not experienced didn’t include those held most dear.
Judgment. Jealousy. Since I’m spilling my guts, I might as well reveal another weakness--that would be a prideful spirit. I can’t begin to tell them all but will name a few. The mirror has become an enemy. I can’t escape when Catherine does my hair. She has a full length mirror. Before ALS, I usually came at the end of work, still dressed in a business suit. I always admired my appearance. Jeff liked my legs, and there I could see why! Now I am flabbergasted at the difference.
I wish I could hold a sign that says, “Not My Fault”! But then again, I can’t hold anything! Instead, I want to cry out, “Can you believe I ran a half-marathon just four months before diagnosis?” See, I am prideful. There’s more, but I won’t air all my laundry!
It is my hope that every writing makes you reflect on your behavior--never in a bashing way, but simply stimulating a path that leads to evaluation.
One last verse…. Psalm 119:175 “Let me live that I may praise you, and may your laws sustain me.”
Friday, November 25, 2011
One of my favorites was a Christmas get together at Mammaw Ouida's and Papaw Winston's house at Christmas eve. Dr. Stephen Tucker was thrown into the mix. I was a purist when it came to sneaking food bites in baby Rebekah's mouth. That night I allowed an exception. Dr. Steve sat Rebekah by the punch bowl and he commenced to dip her pacifier in the treasured recipe of egg nog punch! Yes she immediately began to kick her little feet with white ballet slippers that buckled around her ankles. She was wearing the first smocked dress I made her with all white smocking on white batiste except for one green vinelike row with red french knots that looked like holly berries. We still have a photo to remind us of her first taste of sugar!! Our philosophy is why leave others out of the mix when we have so much to share?
A colleague of mine from California noticed a term I frequently used to describe my family or friends. The phrase is "my bunch." He was literally a standup comedian and as we got to know each other during the two weeks of training, he incorporated that phrase often. I am so thankful for my bunch! I encourage all of you to do the same!
Sunday, October 9, 2011
Thursday, September 29, 2011
Now my family has a new soapbox. We seem to be united toward this effort. You see it every day whenever you're in your car, when you are in line for the next available parking space. You may have guessed it. I hope you're not guilty...I am referring to the always treasured handicapped parking spaces. I am amazed at how few handicapped spaces are provided at normal restaurants and stores. The exceptions would be Target, hospitals and doctor's offices. But for sure there is always someone needing that handicapped space you are pulling into now! Go ahead and fess up...you know I am stepping on all your toes!!
One day, Abby and I were eating lunch at Chilis. We were seated in clear view of the lone handicapped space. And yes, it was adorned with the familiar blue handicapped sign. At this point, it became the game surrounding our outing. We had fun watching for who would be getting in that ever cool Mercedes Benz that was parked in THAT spot, and driving off. Finally, the moment arrived and we watched intently as a couple approached the car. Not to our surprise, we didn't see even the slightest limp. I thought I would have to hold Abby back, as if I could!!
I'm not sure why this always seems to happen with Abby, but I have to add this event. She and I were going to our favorite place to get pedicures. Nail Paradise offers great services and we have grown attached to the technicians there. I met them before I had ALS. Jennifer would work her magic on my feet that constantly were in heels or running shoes! She would put my pain tolerance to the test at each visit. I told Jennifer if anyone ever tried to snatch her purse she could put them down with her thumb alone! The entire staff goes way beyond the call of duty and always responds to whatever challenges I present to position me in the spa chair safely. Back to the story...there were no handicapped places available this particular day, because there was this massive truck parked in the only handicapped spot that had enough space to accomodate the ramp that allows me to exit the van. At this point Abby was warming up the familiar comments that lead to a full-fledged speech of anger! The truck had no sticker denoting proper clearance to claim this spot. We parked at the end of the row to allow enough room to get me out. All the while Abby is muttering sentences of the accusing type. When we got me positioned Abby went to choose her color. Meanwhile I am beginning to sit back to let the whole process take place. All of a sudden I realized Abby wasn't back and wasn't in view... then I saw her, not in front of the polish rack but outside taking pictures of the truck's license plate! She confessed to wanting to track the owner down but settled for calling to report him, hoping to cause him to have to pay a fine. So I end this saga with words from Jesus..."Go forth and sin no more!"
Monday, September 5, 2011
It's finally here! The subject that is never totally off the radar screen in our family...college football. It's the favored sport, and if you were present at any family event, you can expect to hear a number indicating how many days til the beginning of next seasons starting date! The topic isn't limited to the males in the family, either. Rather, the females know their own opinion about teams, SEC rankings, returning key players, and evaluation of new uniforms. My Mom talks about the Dallas Cowboys like they are friends! Joseph contends that talking to his grandmother is like talking to a guy, especially with regard to the Cowboys. Food fare ranges from grilled burgers and hot dogs, to home made ice cream and brownies, and always includes cheese dip and chips. If the guys score early in the hunting season, including bow and arrow or muzzle loader, we might have smoked venison or shish- k-bobs which is a family favorite of my bunch, even Hudson and Hamilton.
The more the merrier applies here but only to true football fans. No browsing through magazines, couponing, or discussing a new recipe will be allowed! We gave Bethany a bye last fall since she was in the middle of making wedding decisions and finalizing her bridal registry. Even though she has started pharmacy school, I am certain this season will include many index cards with pertinent info she is committing to memory. She has such a disciplined behavior for taking care of business. If you read in earlier posts about parenting tips, I mentioned if my kids were having fun together and were loud as well, I didn't say a thing about the noise. I like the sounds of fun, no matter how loud! The same thing applies to football cheering. Both televisions are dedicated to the Game for moments that require pacing from room to room . Jeff and Joseph are the main pacers. Did I mention that it gets loud? Last season I could lead the crowd in the razorback cheer. This season that can't happen. I had Abby make keys on my eye-gaze screen that say "Go Hogs Go " and " Go Joe Go ". Joe Adams was a classmate of Anna Grace's in high school, and deserves his own cheer since he has been keen on running back punts!! I must mention that DJ Williams was a friend and team mate of Joseph's in high school also. We miss him of course, but catch him in his first season of NFL play! Familiar phrases than can be expected..."I'm worried about our running game"..."we can't make those type of mistakes"...and the favorite, "here's your ball game right here"! Since I'm finishing this post the morning of Gameday, I'm reminded of a Covidien colleague Caroline Fardel. If I listen hard, I think I can hear her yelling Roll Tide!! You go ahead Caroline, I think I hear a Woo Pig Sooiee louder!!!