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.”