The Fact of the Matter is...

The following was written in November 2010 for Community Bible Study's opening session for the Bryant and Little Rock classes, read by teaching directors Mary Lee Dell and Sara Roberson respectively. Both are committed students of the Word and dear friends as well...

" On July 2, 2010, I was diagnosed with a motor neuron disease, specifically ALS. The disease first attacked the muscles in my mouth and tongue which caused me to have slurred speech in the beginning but has quickly moved throughout my body and is zapping my coordination, flexibility, strength, and balance. Because of that I have experienced several falls which have produced some pretty artistic bruises! Obviously, it is my constant goal not to fall, as well as the person with me. Since we know it can happen so quickly, I continue to hear the same phrase from whoever is "Nancy sitting" at the time. The phrase is, "please don't fall, not on my watch!" I thought it amusing at first but as I heard it more and more I thought, "are these people having a meeting without me?" or "did I miss the memo?" Even in the midst of such extreme disappointment that totally caught me off guard, we still laugh! And quite often I should add, praise
the Lord!

As we go about our normal daily lives we overlook so many things that are right in front of us, simple things. I don't mean this in a critical way, I had a normal life, too, until now. Things like: applying mascara or lipliner that actually ends up where you intended it to be, slicing an apple or cutting your own food, driving yourself when and where you need to go, ordering something to drink at a drive through, saying hello to someone you pass at the grocery store, talking on the phone as long as you want, multi-tasking,(how I miss that!) kissing your husband, children, or grandchildren with puckered lips, speaking and being understood, dressing yourself with no assistance, or tweezing your eyebrows or any other hair that has aggressively grown in an undesired place!


I could go on but I'm sure you get the idea. One normal thing brought to my attention lately in "the Natural" state of Arkansas are parking lots. I had never realized how sloped it is around here! Even places I thought were flat really aren't! My driveway is sloped, nearly every parking lot is sloped, and the designated handicapped areas are built on an incline most of the time. As a former runner, I thought at the top of every uphill comes the glorious downhill! That has somewhat changed for me. In other words, what is suppose to help me by being sloped to get around with a walker, really poses a challenge! I must work hard not to get ahead of my ability to keep up with myself! I have mental pictures of myself falling flat on my face in some designated handicapped area!

As my caregivers and I watch out for any possible mishap, we breathe a sigh of relief when we have successfully maneuvered through whatever we are trying to accomplish.
They think, yes!!, she didn't fall on my watch, while I check off another day without a fall. When I realized I was hearing the same phrase over and over, "not on my watch," the thought occurred to me, God never gets a break! His "watch" is endless, He isn't spending part of the day with me. He isn't scheduled in for the afternoon shift! He is AWAYS on "watch" for me. How else could I begin to bear this nightmare that has taken over my body and my plans for this stage of my life? How else could I have a moment of peace when I know what possibly lies ahead with this monster of a disease that has no medical cure! Hebrews 13:5 says, "never will I leave you, never will I forsake you." I know it by heart, I cling to the promise it provides and yet I still have the insecure feeling, why did this happen to me on Your watch?
When was the last time you read the "by faith" chapter? In Hebrews 11 we are told: by faith we understand that the universe was formed at God's command, so that what is seen was not made out of what is visible, by faith Enoch was taken from this life without experiencing death, by faith Noah was warned about things not yet seen and in holy fear built the ark that saved him and his family, by faith Abraham obeyed and went to a place he did not know, by faith Abraham, who was as good as dead, fathered a child to Sarah, who was barren and past the age to conceive but bore a child because she considered Him faithful who had made the promise, by faith Abraham offered Issac his only son as a sacrifice because he believed God could raise him from the dead, by faith Moses' parents hid him for three months after he was born because they saw he was no ordinary child, by faith Moses refused to be known as the son of Pharoah's daughter, by faith Moses kept the Passover and sprinkled blood on the doorpost so the destroyer of the firstborn would not touch the firstborn of Israel, by faith the Israelites passed through the Red Sea on dry land, by faith the walls of Jericho fell after the people had walked around them for seven days, by faith Rahab, who was a prostitute, was not killed like those around her because she welcomed the spies. Do any of these sound like normal life situations or more like the theme of some adventure novel or movie? Was God on watch while each of these events took place? I suspect these people were living what seemed as normal lives to them like I was, but each had the opportunity to move forward by faith or not. In each situation God did not leave or forsake those living by faith, but provided amazing moments of provision in what may have appeared at the time like He had left "His watch.". We all get to choose how we function in what might be the most horrific, disappointing, maddening, faith stretching event in our life! I am trying my best to follow Moses' example in verse 27 of Hebrews 11, "by faith Moses left Egypt not fearing the king's anger: he persevered because he saw Him who was invisible!." In other words, he trusted God was on "watch!"
You may not like hearing what I am about to say. Until now I have painted a picture for you of how this event has occurred, some real but not so difficult thoughts I have had, and scripture that reminds us that God does not forsake us when it appears there is little or no hope. I would be misleading you if I stopped here. To give you the cheerleader version with a few light lines here and there so we feel encouraged by positive highlights would be leaving the wrong impression. Not presenting the whole story would be unrealistic and untrue.
I pray none of you will ever experience a tragedy of this degree or nature. My hope is to utilize my experience in a way that will glorify God and plant truth in your minds and hearts to equip you. If we believe Christ's teachings, we can't overlook his words, "in this world you WILL have trouble." The truth is I have many moments of unrest, extreme sadness, complete disappointment, jealousy about things that have been taken away from me and things I may not experience that I have dreamed of experiencing, fear of the unknown with how this disease will play out in me, and embarrassment as I lose more and more independence. I hear conversations and watch interactions that remind me that I may never participate again on certain levels unless God heals me, and as of right now I see no signs of that happening. What I witness is more and more physical weakness and inability to do for myself, more moments of pushing myself to complete things I consider vital for Jeff, our children, children-in-law, present grandchildren and ones to come. I had begun a new phase of life that would allow more time with Jeff and our friends, the ability to actually choose how we spend our time and money because of less responsibility since our children are independent adults, all but Anna Grace who at the age of nineteen completely still needs my mothering touch in this critical transition from home to college. The thought of not being present when my children have babies is nearly more than I can bear no matter what I write so they will know how much I would love them or what I smock so they have an heirloom treasure from me. Whatever you can conjure in your mind to be a situation of utmost horror, I have emotionally been subjected to that degree in my thought processes. As long as I am being completely honest I will confess that even thoughts of heaven where I will see my Savior face to face have not brought me peace. I continue to think that will be great later but not now, not yet! The guilt from that has made me question how committed I am to the eternal perspective or if I am more tied to this world than I realized. I have tried to comfort Anna Grace when she has lost friends in an untimely stage of life. I have said to her that they are in a betterplace and wouldn't choose to come back if God gave them a choice. Even if it is true it isn't comforting. How shallow our explanations can be at times! I admit there is nothing in that type of statement that brings me peace. But because I tend to be a positive person that looks on the brighter side of life and in this case, possible death, I refuse to leave you in the depths of despair. The complete thought of Christ in John 16:33 was that we should take heart because He would overcome the world. Just as I didn't want to paint a picture that was unrealistic in a positive realm, the reverse is true as well. I must respond to the eternal place prepared for me because I completely trust I will be there when the time is right. I know God is still "on watch" where I am concerned! Let me close with this thought from Hebrews 13:20. May the God of peace who through the blood of the eternal covenant brought back from the dead our Lord Jesus, that great Shepherd of the sheep, equip you with everything good for doing His will, and may He work in us what is pleasing to Him through Jesus Christ, to whom be glory forever and ever. Amen ! "

Journal Entry

If I was keeping a journal, this would be yesterday's entry...Friday, March 18, 2011...

I woke up looking forward to the day. Abby and my sister, Judy, would be spending the day with me. If Joseph was working in Little Rock, he might pop in for a sandwich and a quick fix in his favorite spot on the sofa!! My nephew was bringing my mom for the weekend. Jeff left Wednesday morning after taking off five weeks to be home with me and he needed to spend two nights out to reconnect with doctors in the northern part of the state. He would be coming home late afternoon. The weather had completely given in to spring with warmer temps, no humidity. I always get my hair washed and styled on Friday so, yes, this had all the makings for a great day. All the people and circumstances I mentioned occurred. It WAS a good day! But while eating lunch in a local deli, my pleasant mood was challenged.

A mom and son came in and were in clear view from where I was seated. Maybe they had been to the orthodontist or just completed his driving test. My mind reflected to times I and one of my kids had a reason to escape shool/work for some one on one time. That was a pleasant memory, something I always looked forward to having with each child. Then my eyes were drawn specifically to the way the mom was dressed. She had on a black knee length skirt with a white spring weight coat top stitched in black and to complete her ensemble, a pop of color with red heels. Had she been in my closet? I love wearing skirts and heels! I had one black suit that was my very favorite. I wore it so much that Jeff said it was time for it to be retired. I must admit that the lining of that skirt was worn through in certain places! I removed it from the hanger and placed it in my "give away" sack. The jacket had three quarter length sleeves so as the weather warmed, I pulled it out for one more season. The combination of the beautiful weather and her outfit reminded me of numerous times when I would go from work to Home Depot in suit and heels, peruse the flower selection, then load a cart full of flowers, bags of Miracle Grow soil, and mulch. I love freshly mulched beds and getting my hands in the dirt. I don't do that in my skirt and heels. As each season rolls around, I'm forced to face past behaviors and rituals with present limits and realities. Everyone encounters change. I consider change as an opportunity to explore, learn, and stretch out of my comfort zone. The change I currently am experiencing holds true to the model. We are constantly exploring to learn new, better, and leading to the best way, to handle the days as smoothly as possible. I had to give up the whole comfort zone concept several weeks ago. I miss so many things that filled my life before this disease filled my body! Today presented three. Wonder what tommorrow holds?

Just a Thought...One

My miracle working physical therapist just left. She moves, stretches, and bends my joints/muscles every which way but loose! There is some discomfort involved but nothing I can't stand! I look forward to every visit. Today while she waw helping me walk, (heavy on the helping), I was struck by the decline physically I have experienced over the past twelve months! A year ago this weekend I ran in the Little Rock marathon with Jeff, Rebekah, Abby, Jeff's brother Winston, and my nephew and nieces Trey, Ashley and Bonnie. The only symptom manifested at the time was slurred speech and you don't have to talk to run...although I would have thoroughly enjoyed that on my thirteen mile course. As my miracle worker helped me from one room to the other, I couldn't help but have a bit of a pity party in my mind while working as hard as possible to lift my feet, keep my back straight and balanced so as not to cause us both to bite the dust! We just made four laps from the front door to the edge of the family room and back, but it was more trying than my jaunt last March! I can't believe my body has weakened to this state. If your are waiting to initiate some type of physical activity, C'mon! Get Moving!! I'm not writing this so you will feel sorry for me, but rather to motivate you to get in motion! You don't have to train for a race, but expend more energy than just going from your den to your car, your car to your first stop of the day and back! You owe it to yourself, your family and friends. It may take awhile before you like it, but endorphin power will kick in and you will be so proud!!

Amazing Love

Recently during the time we were all together singing, several phrases from the lyrics chosen by the worship leader planted thoughts in my mind I have not been able to dismiss... "Amazing love-how can it be that you my king would DIE for me...I'm forgiven because you were FORSAKEN, I'm accepted-you were CONDEMNED...CRUCIFIED, laid behind a stone, you LIVED to DIE, REJECTED and ALONE-like a rose TRAMPLED on the ground...you took the FALL and thought of me ABOVE ALL." I could write nothing else and hopefully you would follow the same thought process as I had from the emphasized words. If you catch on ot the theme, Jesus definitely got the raw end of the deal. No matter what struggles I'm combating, it can't begin to come at all close to the physical and emotional suffering he endured. I am completely inept verbally to describe his experience. It sent me to the gospel of Luke to read again the last hours Jesus was alive in the flesh on earth. He went to the Mount of Olives to pray, asking his closest friends, his disciples, to pray as well. I think Jesus reveals his humanness clearly by asking God to consider taking the cross process away. An angel came to strengthen Jesus but his agony was not lessened, in fact it intensified to a degree that as he continued praying his body perspired drops of blood. I can only imagine his emotional state to cause that kind of physicial response. I can, however, ask you to remember that even though he was the son of God, he was also the son of man, and the full weight of fear swept through his mind and body as it would you or I... were we facing any component of the levels of trial and suffering he endured. It's only natural since he was human no matter how much he believed in the cause. I have experienced moments when choking was severe enough to make me think, "Is this it?" So this is how it feels when your body has a stronger grip than your will! It is frightening, and Jesus must have had similar thoughts as his weakened body sustained abuse...including a crown of thorns placed on his head.
He returns to find no one praying. Instead they are sleeping. Again he asks them to pray when a crowd of men approach being led by one of his apostles. Judas betrays him, Peter denies him, the high priest and officers of the temple mock and beat him. They take him to Pilate who, after questioning him, gladly sends him to Herod because Jesus was from Herod's jurisdiction. Jesus continues to be vehemently accused, questioned, and mocked yet neither ruler could find any reason for Jesus to die. Both wanted to release him but they succumbed to the cries of the crowd to crucify him! The only break offered to Jesus was for someone to carry his cross on the way to Golgotha, where he would then have nails driven through his hands and feet securing him to that cross.
In our society there are standards in place to ensure the best means possible for comfort in the last days and hours leading to a person's death. It is called hospice care. Jesus received no such care. The soldiers offered him sour wine to drink but nothing to make his death more comfortable. There were people present who loved and believed in him but somehow I think they were over shadowed by the many who didn't. He didn't have the luxury of family/friends/medical staff circling him, singing, praying, or reading scriptures to soften his exit. What he had was humiliation as his physical body was exposed and separation from God as he took on the dark, sinful places of mankind.
Two observations from the reading are important. Jesus continues his ministry even in crisis mode. In the garden, when approached by Judas, one of the apostles drew a sword in defense and cut an ear off the servant of the high priest. Jesus stops any additional fighting and heals the servant's ear. Two criminals were being crucified along with Jesus. One of them acknowledges the innocence of Jesus and Jesus assures him a place in paradise. Reading the gospels, it is clear to see his intensity by... his response to crowds, or a single individual, children as well as adults, positioning himself in a boat to allow more people to be able to hear him...just to name a few. Read the first four books of the New Testament to see for yourself! Jesus loved people enough to sacrifice anything and everything for us to accept his offer of forever protection and assurance of being eternally present with him. He had limited time with a big agenda. I understand his push. The last hours on the cross were dark even though it was daytime. At his death the earth quaked, rocks split, and the curtain in the temple that hid the most holy place was torn from top to bottom-signifying that God was not hidden but was available to everyone! The head soldier and the crowds that witnessed these events realized Jesus was innocent. Why couldn't they grasp his Lordship before his death? How could they witness or hear testimony of miracles and still doubt? We have a written account and yet there are people who don't believe. Pray for more to be open to the gift of salvation Jeus died to offer. Since I was led to write this by song lyrics, I think it appropriate to end the same.
"What can I give him, poor as I am? If I were a shepherd I could bring a lamb. If I were a wise man I could do my part. Yet what can I give him...give him my HEART.

and the winner is...

I wrote this the morning of our Chandler family Christmas brunch. Abby did the honor of presenting for me!

Yesterday was a red letter day for me. Abby and Anna Grace helped me take a bath and by dinner I had typed so much I couldn't grip the spoon so Jeff had to feed me. And yes, he was moving his mouth with each bite like when you feed a baby! At least I was sitting at the table like an adult even if I was in a wheelchair. I began thinking about all the ways I receive assitance to be able to maneuver through the day, and thought I would list them:

Ashley Philbrick-Calendar Girl Award...keeping those meals, appointments, and social events straight!
Ashley Chandler and Erin Conner-tie for Starbucks Award... tall caffe mocha, two pumps chocolate, one pump peppermint and whipped cream, please!
Bonnie Chandler-Female Intuition Award...always seems to know what I need next and is beginning to do it before I even ask!
Abby Brown-Makeup Artist Award...every time she paints my face I receive compliments for looking pretty!
Rebekah Gates-Hoist Award...for the grip that never fails to get me up and where I need to go next!
Anna Grace Chandler-Clean Record and Entertainment Awards...since I have never fallen with her, even while laughing!
Linda Chandler-Transportation Award...for manipulating me into my first wheelchair ride!
Sharon Chandler-Dysfunctional Duo Award...creating sitcom material (she can't hear and I can't speak)!
Joseph Chandler-Search and Rescue Award...for instant response to wild wails and crashing sounds, equipped with he-man muscles to scoop me up! Also known for best foot wrapping technique!
Trey Chandler-Tech Support Award...providing the latest and greatest communication device!
Juston Gates-Tool Man Award...building high end equipment for walkers, wheelchairs and tricycles!
Luke Brown-Choking Award...testing recovery capacity for breathing caused by comedic activity while eating!
Winston Chandler-Tears Award...good for initiating a cry with a glance!
Hudson and Hamilton Gates-Cheers Award...guaranteed to make me smile!
Jeff Chandler-Best All Around Award....for constantly providing assistance with panties up, panties down, more drink, warm it up, comb it down, puff it up, wipe it off, wet it down, load me up, take me out, and everything else that makes him the best husband a woman could want!

Imprint

I am somewhat a creature of habit... Classic business suits with trendy tops and shoes in seasonal colors, favorite entree selections at restaurants, house decor placed in the best arrangement and left for years, the same menu for Sunday lunch guests. My philosophy borders on "if it works, why invest time, energy, and money just for change?" There are more important things that demand my attention. Sure I want to be in style and experience new opportunities and adventures, but not at the expense of what I consider near and dear to my heart. I have three rings I wear all the time. One was a gift when I was sixteen, one was a Christmas present from Jeff in 1985, one was my wedding ring. When I say I wore them all the time I mean all the time. Whether working in the yard, wiping down my kitchen with "a little soapy water," (the phrase in parenthesis is an inside joke I should write about another time!), water skiing at the lake, kneading dough for yeast rolls, all three rings on like a permanent fixture. I had to have the dome ring repaired once because I clapped so much at one of Joseph's football games that I knocked the diamond out! So you can imagine how I felt when Jeff lotioned my fingers in an attempt to take them off before my fingers swell to the point they wouldn't come off. He was successful with two but not with my wedding ring. I have a high threshold for pain but after several attempts to get it over my knuckle, I threw in the towel! That circle of gold had to be cut in two and pulled apart by two pair of needle nose pliers, Jeff on one side and my nephew, Adam, on the other. (It's nice having a doctor in the family)! It's just a ring, right? I try to keep my emotional attachment in check where material things are concerned. Things are going to break, be lost or misplaced during the normal course of events in life. This one was different for me. I had never taken my wedding band off since Jeff placed it on my finger as a symbol of our love and commitment forever and ever amen! After the deed was done I noticed an imprint in my finger where my ring had been nearly thirty-four years. Not only that finger but my pinky that held the heart shaped dome ring I sported since 1985! Funny thing is my pinky had been ring free for a month and the imprint looked like I had just removed it. Later that day as I looked at the imprint side by side on my left hand, my mind took me through a different thought process. I thought about the many imprints that have shaped me in my life. I can't begin to name them all but will list a few: my parents who modeled gracious hospitality, unwavering faith, commitment to our extended family and church family, and unsurpassed work ethic, family friends that showed the fun and value of relationship, summer sessions at Camp Wyldewood where I was introduced to college age counselors that blew me away with their true love for Christ (and Coach Groover who I was convinced was an angel God sent to earth!), college years that taught me so much more than book knowledge, the acceptance, influence, and love from Jeff and his family, and a vocal ministry with people that stretched my faith and loved me warts and all! (I wish I had time to write a book about the Joyful Noise years! It would be a crossover of comedy, therapy, theology, relationship, musical theory...which is a fancy way of saying multiple opinions!) There are too many individuals, situations and circumstances to name and I'm sure after I post this I will be miserable about what I neglected to mention!
Imprints can fade through time and distance. In the beginning stages of this dilemma I prayed diligently for healing. As the scripture instructs "without ceasing." Praying, begging for God's intervention, and eventually telling family/friends so they could join me in prayer became critical as my speech continued to plummet. I, in my adult life, have been able to direct my thoughts while sleeping so I know heaven was busy transcribing so many prayers! During this, I looked forward to waking up, hoping healing had taken place. If not complete healing, even improvement would suffice. After a morning run, if the house was empty, I would lay face down on the floor and cry out to God to deliver me! That is the prayer He has answered to date. Through the assistance of many, I and my family are being delivered! As more symptoms have lead to more weakness which leads to more challenges and changes, I have become consumed with myself and what I feel compelled to accomplish while I can! In this process I think my Jesus imprint has faded, and been replaced by my approach of devising a plan to complete what I think is important. I know this isn't smart for me. Having a terminal disease is not license for ignoring the imprint that has given me life! I am examining my thoughts, motives, and prayers and encourage you to do the same, making certain the right imprints for our lives have the deepest grooves!

Bottle #20

Have you been in a situation and thought, am I in a sitcom? I had one of those moments Saturday. Jeff needed to run some errands and I had an idea that he could drop me off to get a manicure/pedicure, accomplish what he needed to, then pick me up! Brilliant! He reluctantly agreed but I assured him I would be fine. I had been there several times and they even call me by name when I come in. It was a beautiful aftternoon and as we drove away from the house I thought I would choose a color I hadn't used before. As we entered the salon, the first signal letting me know this might be a different experience was when no one greeted me by name. To steal a phrase from Anna Grace, "buck up little camper," you can do this! Someone familiar has to be here! As Jeff responded to the first nail technician I saw only one familiar face! Where was everyone? I wanted to ask but they couldn't understand me anymore than I could understand them! Jeff seemed hesitant but the gentleman said, "pick color." So he wheeled me around in front of the wall display where I quickly knew this would be tricky! This would feel like shopping to Jeff with 100 different colors to choose from! Jeff will do anything for me but he doesn't have too much patience in this kind of setting! Can you imagine how challenging it is to select nail polish when you can't stand up and peruse the rows of colors, talk about them, or even point to one you think might be the color of choice! On the drive I had typed that I would like a dark polish, not black but dark. I intended it for the nail technician I knew read English but she wasn't there so I showed it to Jeff. He gave me that are you kidding look when I noticed some bottles were numbered. I scanned the numbered bottles for a color I had in mind when my eyes landed on bottle #20. I have a good eye for color but wasn't exactly sure, so I typed for Jeff..." read the name on the bottom of bottle #20." He turned it upside down but the print is small and of course he didn't have his glasses! I sensed that impatient thing surfacing so I decided bottle #20 would be fine or maybe there would be one on the supply cart more like I had in mind. Not so much! Jeff helped me in the spa chair and before I could address the color issue my IPad was taken and placed aside while one nail tech rolled up my pants leg and the other was pushing up my sleeves! We were off to the nail experience with little communication. I couldn't even tell them I was a bit lopsided in the chair as the water was bubbling, the chair massaging, and clippers snipping! I tried to shift with no luck so I sat back to relax and decided even if bottle #20 wasn't the color I wanted it was just polish and would only be on my toes. Then I realized he didn't know I don't put polish on my fingernails, just clean up the cuticles, trim, and buff. So as I was sprawled between two nail techs getting the full treatment except for someone feeding me grapes he began to polish my fingernails with what appeared to be black from bottle #20! Well my initial thought for a new shade was taking place before my very eyes and I knew Anna Grace would think it was cool. But I received an unexpected shout out from five year old Hudson, "hey Nan, I like your fingernails!" Who said guys don't notice details?