Beauty From Ashes

Twenty-eight years ago, on December 21, 1993, my perception of marriage, love, commitment, and faith were shattered.  As a young Christian, my life was suddenly sent headlong into a future of uncertainty and change.  I did not see it, nor could I say it at the time, but God was just beginning my story.  To bring beauty out of ashes.

I have been hesitant to tell this story.  I was worried about judgment, condemnation, and “lifting someone else’s covers”.  I don’t tell this story to shame anyone or to put my ex out of front street.  I’m telling my story, the good, the bad, and the ugly because God states in His Word:

2 Corinthians 1:3-4

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our afflictions, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.”

The Holy Spirit in the past few weeks has shown me that this is my story to tell.  There is no shame.  There is no blame.  Just a beautiful story about how God began His journey to claim my heart for Him.  The journey wasn’t pretty or easy or anything I would ever wish upon another soul.  But now, in retrospect, I can see His hand everywhere in my life since.  From a young, naïve new believer, who placed her faith in “works”, to the woman I am becoming today.  It is my story to tell.  And it is beautiful.

I was a young 20 year old girl, longing to be loved and cherished.  I was also eager to get out of my parents house.  I wanted to grow up.  I spent most of my teenage years wrought with devastating insecurities about my body, my looks, and my value as a human being.  I assumed being married would be the answer to all my sorrows.  Someone would finally love me unconditionally.

I had been in a long-term relationship in high school with a boy I thought I would marry.  But then, a miracle happened….Jesus saved me when I was 19.  Yes, I, who was not looking to be saved, was pursued by the Savior of the world.  The time had finally arrived when He decided it was indeed my time to grow up.  I knew very little about Christianity or the Bible, but I was voracious about learning.  I started attending a small community church called Rolling Hills on Chandler Street in Vacaville.  I also started attending a midweek Bible study in the home of Scotty Sanderson.  This is where I learned that I should not be unequally yoked with an unbeliever.  What does that mean, you might ask?  Well, it means a follower of Jesus Christ should not become entwined in a relationship with someone who is not a follower of Christ.   The term unequally yoked provides a word picture of a plow unequally yoked.  How well would a plow work with a beastly ox and a donkey yoked together? What fellowship does light have with darkness?  So, what was I to do?  Weren’t me and my boyfriend supposed to get married and live happily ever after?  I didn’t know what to do except to pray.  So pray I did.  And I believe, the Holy Spirit told me to break up with my boyfriend.  So I did.  It was my first act of faith.  And I kept attending Bible Study.  To my surprise, my boyfriend, unable to accept the breakup, started coming to the Bible Study weekly with his arms crossed glowering at me.  I kept praying….please Lord, bring the person I am meant to be with into my life (yeah, still looking for love in people instead of God).  Not long after, I met my first husband in that same Bible Study.  Surely God was “rewarding” my obedience with the perfect man who would love me completely. Needless to say, we had a whirlwind courtship (remember I told you I was anxious to get out of my parents house) and we were married 10 months after our first date.

We were married about 6 months when I got pregnant with Brittany.  Man was I terrified.  I had so many insecurities about being able to care for this baby in my womb because I was a terribly picky eater.  Would I be a good mother?  But I trusted God.  It was a great experience.  I loved being pregnant.  It was the first time in my life I didn’t shame myself over my body.  I loved feeling her inside of me and would wonder about what she would be like.  As far as I was concerned, I was living a lovely life with my new family.

We wanted our kids to be close in age, so we started trying again when Brittany was about a year old.  I got pregnant with Rebecca when Brittany was about a year and a half.  We were so excited to be welcoming a new life into our family.  They would be 24 months apart.  This pregnancy was more difficult as I experienced pre-term contractions starting in the 6th month.  I was put on bedrest until 38 weeks.  I had her 1 week early.

We were still very much involved in a new church by this time.  Both of us were enrolled in a Navigators Discipleship Course that met weekly for a couple of years.  I was drawing near to God, memorizing scripture, serving in the body.  All the things I had been taught to do as a good Christian.  Our marriage seemed solid.  We got along.  We rarely fought.  He was kind and helpful.  He was a good provider.  I was a stay-at-home mom.  The only hard thing we experienced was his frequent absence from home due to his job.  He was a loadmaster in the Air Force which meant when he was working, he was gone.  He would come home with tales of men in his squadron committing all sorts of sins overseas.  But I never worried.  I trusted him.

We had couples we were friends with in church.  Through one of these friends, I met a woman named Diana.  She was new to California, from Virginia.  Her husband was also in the Air Force.  Diana and I hit it off right away.  The conversation between us flowed easily and there was a measure of comfort in her presence.  We became fast friends and she quickly became my BFF.  Soon we introduced our husbands into the mix and we were soon the fearsome four.  They had 2 children as well so we all had a lot in common.

Looking back, it all happened too fast.  Our families soon became enmeshed and were sharing meals together several times a week.  Drinking was casually introduced into our get togethers.  I started to get  uncomfortable with how often Tim wanted to spend with them.  Then I started noticing the stolen glances between the two.  They way they sheepishly flirted and giggled.  All this right in front of me.  When I questioned him about it or suggested that we needed to spend less time with our new friends, I was told I was crazy and that it was all in my head.  I wanted so much to trust the two of them, so I dismissed my fears and carried on.

One night while Tim was gone on a flight, I was over at Diana’s house.  We were quizzing one another on Scripture were we memorizing.  Suddenly her phone rang.  She answered and handed the phone to me.  It was Tim and I was so happy, I exclaimed “How did you know I was here?”  I moved into the front room to seek a measure of privacy.  The way she lingered, watching me, trying to hear what I was saying, the way her eyes furtively glanced about, I knew something was not right.  That night, as I lay in bed I prayed a simple prayer, “God please let me find out the truth”.

A few days later Diana asked me if I could watch her kids while she went to a doctor appointment.  Afterwards I made her lunch and we had a nice visit.  She told me that she planned to go Christmas shopping that night and I thought it was odd that she did not ask me to go with her, but I dismissed the thought.  We hugged goodbye and I went about my day.  That night Tim was due home from a trip and I anxiously awaited his return.

Eight o’clock rolled around and then nine o’clock with still no word of Tim’s arrival.  He should have been home by now I kept thinking.  Something in the pit of my stomach told me something wasn’t right.  We only had one car and I would need to pick him up, so I called the squadron to inquire about his arrival time.  I was informed that it had arrived at least an hour prior.  My heart began to frantically beat, as my fears once again began to run wild.  I called Diana to see if she was home.  Her husband told me she was out shopping at Toys R Us for Christmas.  I knew that they were open until midnight, which provided the perfect alibi.  What should I do?  My children were already in bed.  Should I wake the kids up to go to the squadron in search of Tim?  What would I tell him if I just showed up without him calling to tell me he was home?  Would I look foolish in my suspicions?  I offered up another meager prayer, “Please Lord, show me the truth!”.  I quickly packed my children into our car and began the agonizing short drive to the squadron.  As I drew near, I headed to the back parking lot, where the airmen parked when they were away.  What I thought I would find, I had no idea, after all we only had one car, what was I looking for?  As I rounded the building and approached the dark, crowded parking lot, I saw only one empty space.  I steered into it and at once recognized the car directly in front of me.  Through the fogged up windshield I saw a pair of startled eyes staring in wide-eyed dismay.  I knew those eyes.  I barely threw the car into park before my door was open.  My car had those automatic seatbelts that slip up and out of the way when you open the door and I was out of my seat so fast my neck got tangled in it.  I quickly escaped, ran for her car, and flung open the passenger door to see the wide-eyed faces of my two best friends terrifyingly gaping at me as I flung as many expletives as I could at them.  Tim jumped out of her car as I pounded on his breathless chest screaming, “How could you?  How could you do this to me!” as Diana quickly sped away.

I ran to my car and jumped in as he followed to the passenger side.  I kept screaming, “get out, get out” as he exclaimed “I’m so sorry, I never meant to hurt you….nothing happened….I’m so sorry…” as the kids wailed from the back seat.  “Get out!”.  “Just drive me home.”  “NOOOO, get out!”.  He did and I sped away in tears.  I went directly to my Bible study leaders house as my whole world fell apart.  My leaders revealed to me their own difficulties with infidelity and how the Lord restored their marriage.  This gave me hope that He would do the same for me.

This all happened four days before Christmas.  Christmas has never been the same for me since.  I heard it said that our bodies store trauma.  I don’t know how this happens but I believe it to be true.  Every Christmas season, without fail, I become solemn, I retreat into my shell, I feel depressed,  I have to search for the joy that should be there at the celebration of the birth of my Savior.  I go through the motions, not even reflecting on this period of time anymore, yet year after year my body somehow remembers the pain, the trauma, the death of my life as I knew it.

The ensuing months were a blur.  As I tried to reconcile this broken marriage the deceit and the affair continued.  Too many painful stories after the one I just told to be able to continue telling them now.  Perhaps another time, perhaps not.  The beauty isn’t found in the details.  All that matters is that I survived.  It is the part of my story where God began tearing down the lies and began me on the journey of truth.  And yes, even after twenty-eight years and a new life in between, He’s still leading me in truth.  Now more than ever I can see how the ashes of my life have been used by Him to create something more beautiful than I could have imagined.  Today I am a realist.  There is no happily ever after in this world.  My happily ever after begins at my last breath, when I see my healer face-to-face, my Jehovah Rapha.

I tell this story as a way to release the trauma.  I tell my story so that others who read it and have experienced something similar can find hope.  I tell my story so that I can say with all honesty that you can move on.  The pain will lessen with each passing year.  Your body may continue to betray you, to suck you back down into the pit of disappointment, anger, depression, or bitterness.  But you don’t have to let it take over you.  The God who holds every one of my tears (and yours) in a bottle is waiting for me (and you) to surrender it to Him yet again.  He is ready to remove those sinful thoughts that the enemy uses to drag us down, if we just lay these hurts at His feet once again.  He is the great Physician, our great Healer and He is waiting right where He always waits for you….by your side.  Ready to send someone your way who can comfort you with the comfort that they have received.  He did it for me and He can do it for you.  Someone did it for me and I will do it for you.  That’s beauty out of ashes.

Disappearing…

Who am I? Where did I go? I was once a successful, career-minded woman earning a six-figure income. I managed a busy payroll office, spoke to groups, planned and accomplished goals. Up at the crack of dawn and to bed in the wee hours of the night. Where did that woman go?

I am evaporating into a shell of a person. I can’t eat or drink by mouth. I can’t swallow my own saliva. I can’t hold my wobbly head steady. I am losing my grip, so I am losing my love of writing–a simple joy now a laborious task. I constantly battle mucous stuck between my throat and my trach, trying desperately to clear it with saline spray. My hands have strength but the nerve impulses are dying and I cannot move my fingers with the dexterity I once did. I am having trouble focusing on the written word. I can’t sleep. I am tired all the time. Oh, where did that woman go?

I walk into a store with a tissue in my mouth to absorb the spit I cannot swallow. I endure the stares, the murmurs, the curiosity not intended to hurt, but it hurts nonetheless. Yet I hold my head up high and do what I must. I think, where did that confident businesswoman go? Does anyone remember her?

BUT. Thank God for the but. But I am redeemed. I am chosen. I am beloved. Though I suffer, I find peace. Though I suffer I have One to run to who accepts me, transforms me, will NEVER let me go. He helps me endure and teaches me lessons along the way. My old self is disappearing but my new self is being refined in the fire of my trial.

SO, today, I choose to stand tall. Straighten up my crown and remind myself that my life is not my own. Today I choose to lay it down at His feet so that He may receive all the glory. I may be disappearing from this earth but my light will shine forevermore in heaven. How can that not lift my spirit?

Reality Check

Thursday I had my first in-person ALS Clinic since the pandemic. We had been having video appointments, which in my opinion was a farce, especially for the challenges PALS face. I was hoping that they would be able to do a breathing test on me, since respiratory function is my greatest concern, but unfortunately that day was very humid. Before and on the way to my appointment, I had to contend with a constant flow of mucous and suctioning. We decided that me trying to forcefully blow air out to measure would further aggravate my condition, so we decided to forgo the test.

I have been experiencing what I call “bobble head”. When I walk, I feel like my head is loose and bouncing around. This interferes with my equilibrium so I have been feeling muddled or kinda dizzy–the feeling is really hard to describe. In addition, I have been experiencing neck and shoulder pain and having a hard time getting up without my head feeling like it is flopping back. Jesse kept insisting that it is because I spend so much time sewing, but I never had this problem before. I know my neck muscles are weakening. Drop neck is a common symptom in people who have ALS. My appointment confirmed this fact. I have a neck brace that I haven’t wanted to wear. These changes are scary and I am stubborn. So, they suggested to wear the brace and take more frequent breaks.

Furthermore, I have been having difficulty grasping or pinching. My response time with tapping my fingers is delayed. It’s like my fingers can’t move as fast as my brain is telling them to move. The feeling is the same feeling I experienced when I started to notice my slurring. It’s imperceptible to others, but I can feel the delay. So my fine motor skills are now affected. The occupational therapist confirmed I have weakness around my thumbs and suggested a thumb brace.

So, I have a confession to make. I am very selfish with my time recently. I know the time is coming when I will no longer be able to do the things I love, like cutting fabric, sewing quilts, making books, making cards, writing in my journals, doing crafts, calligraphy, cooking for my family, taking care of my daily needs. So I am making time for all these things. I will have plenty of time to sit and visit, watch tv, read–all the things that I don’t need my hands for. I have not been visiting as much as I used to. Sometimes I feel like I’m being a bad friend because of this. But I have projects I want to finish. They will become keepsakes for the people I love. A piece of me that will live on when I’m gone. I know it’s selfish, but I also know that God gave me this gift to help get me through the hard times. It is my solace. It’s the one place I forget about everything bad and just enjoy the gift of creativity that my Creator bestowed upon me. He gave it to me just when He knew I would need it.

I hope my friends and family understand the selfish period that I am in. I hope Jesse dismisses the fact that I am not vacuuming or mopping like I used to do. I am less concerned about my dirty bathroom or the dust or the dirty dishes. Jesse is taking up that slack with no complaint. I hope he doesn’t see me as lazy. I just have to make better used of my time. Reading and studying His word. Sewing. Writing. Processing these changes.

This week has been a really big reality check. This disease sucks.

Praying the Psalms

Sometimes I just can’t pray. I don’t know what to say or my petitions seem so meager among the great tragedies of this fallen world. Yet He tells us to pray without ceasing. He wants us to commune with Him. My wise friend, Donna Nelson taught me a beautiful way to pray years ago. It’s simple really. Take a Psalm and use it as a basis for my prayer Everytime I enjoy this method of prayer, serenity washes over me. Somehow praying scripture back to God sets my heart aright. It humbles me. It makes me see myself small and my God big, as I ought. It refreshes my soul.

Here’s the last Psalm I actually wrote it as my prayer based on Psalm 71. Give it a try!

No More….

No more pizza

No more water

No more kissing

No more reading books to my grand kids

No more blowing my nose

No more telephone conversations

No more clearing my throat

No more lipstick

No more necklaces

No more running

No more talking

No more morning coffee

No more restaurants

No more Saturday morning conversations

No more swallowing my own spit

No more “just get up and go”

But ALAS……………………….one day…………………………………there will be…………………………..

No more tears

No more suffering

No more feeding tubes

No more port

No more tracheostomy

No more suctioning

No more sadness

No more death

No more SIN!

NO MORE ALS!!!!!!

Breath of Life

Breath. It is something we don’t ever think about. It occurs automatically from the moment of birth until we die. God’s gift to all creatures. Have you ever pondered the miraculous way our respiratory system works? Me either. Until recently….when breathing seems so complicated. It is a marvelous design by the very hand of a loving God, who gives breath to all living beings. It is a gift that should not be taken for granted. Here is a link to a beautiful picture of the intricacies of our breath. https://answersingenesis.org/human-body/the-breath-of-life/

I was awoken this morning at 2am by my breath. You see, I no longer have the privilege of a normal functioning respiratory system and I haven’t for some time. Over the past year and a half I have struggled to breathe freely. If my nose was stuffy, it was a scary ordeal, a feeling of suffocation. This instilled immense fear and anxiety. As my lungs processed mucous, the way they were designed to do, to rid the body of impurities, my weakened throat muscles made it nearly impossible to cough up to swallow (as everyone does), let alone spit out. Imagine that gunk stuck in your throat moving up and down but not out. Constant suctioning and gagging ensued trying to clear my throat of this awful predicament. And the dreaded cold. My biggest fear. Because you see, I could not breathe well from my mouth because of the weakened state of my throat. So what would I do if I couldn’t breathe out of my nose?

On October 6, I opted for an elected tracheostomy. I had been kicking this decision around in my mind for over a year. It is quite a big decision and not to be taken lightly. And to be honest, if I had known exactly what it entailed, I would not have done it. It has been a life changing event. Sure, now I can breathe more easily, but with that comes all the issues of bypassing God’s gift of a built in air cleaning, anti-pollution system.

This foreign object that now resides on my neck and into my trachea has wreaked havoc on my ribs. For the first several weeks, I have been wracked with incessant coughing, which has led to several fractured ribs, countless sleepless nights, a multitude of weary days wondering if it will ever get easier, constant suctioning, trache care, frustration for me and Jesse. Feeling like a burden. Wondering if I made the right decision. It is hard. And not at all what I was prepared for.

I must supplement with artificial humidity with humidifiers and a humivent (a machine with a mask that goes over my trach to supply humidity). They say, after time, my body will adjust to this new way of breathing and I will need this less and less. And I am already down to the humivent two times a day. But I still have fear about being away from home, especially without my suction machine. Because I never know when a cough is coming and I cannot always clear the mucous on my own.

And then I come to my vanity. I have never considered myself to be overly concerned with how I looked. But I am dreadfully aware of how unnatural I look with a 2 inch tube protruding from my neck. It is not easily hidden. I grieve for the me that is forever lost with this new apparatus. Will I ever feel beautiful, sexy, elegant again? I think not. Goodbye, pretty necklaces, v-neck t-shirts and tanks that accentuate my neckline…Hello scarf.

So, here I sit at 3:30 in the morning contemplating the GIVER of the breath of life and I am brought to a heart of gratitude. Thankful that He has provided a way to continue to breathe life into me. This is confirmation that He still has a purpose for me and my life. He has been so merciful to me in so many other areas, how can I not continue to be thankful. I have full mobility. I have good health. I have a loving family. I have beautiful grand children. I have the gift of creativity. I have plenty. I have more than enough. I have Jesus.

Then the Lord God formed man of dust from the ground, and breathed into his nostrils the breath of life; and man became a living being.

Genesis 2:7

Source: https://bible.knowing-jesus.com/Genesis/2/7

My Eulogy to Jim

20190629_155136

My friend, Jim passed away last August after his very short battle with ALS.  I had intended to speak, via my device, at his funeral, but fear overcame me and I chickened out.  I regret it.  Today, going through my computer, I came across what I intended to speak that day.  So in honor of my dear friend, who is greatly missed by me, I wanted to share it.

Jim, I miss you very much.  I will see you again one day and it will be like time never passed.  I love you.

I first met Jim in April. I had been in contact with his daughter Shelly for many months before that, but we never had the opportunity to meet. The moment we first met; our friendship was immediate. When I looked into his eyes, he knew I understood his grief over his disease. There is a certain comfort in having that someone who knows and understands your struggles from first hand experience. There was relief in his face and we both shed a few tears together.
That was at our first support meeting. For Jim, it was an emotional day. He was able to see that there were many people LIVING with ALS and they were ok. Although his diagnosis was terminal, he was able to see that there was still much life to live and that gave him hope.
Shortly after our initial meeting, I learned that Jim was in the hospital so my husband and I went for a visit. Jim was so surprised and happy to see us. Like I said, we already had a connection. I knew from that day on, we would be friends and we would be there for one another.
I didn’t know the Jim before ALS. And since I have ALS myself, I was not afraid nor surprised by its manifestation in him. My father also had ALS and I was his caregiver along with my sisters. I knew first hand that people might stop visiting because they are uncomfortable with these changes and don’t know what to say. I was determined to not leave him alone in his disease, so I visited a couple times a week. Jim and his family were very welcoming to me. They always greeted me with a hug and I began to feel like family.
Although Jim could not speak, he did have a voice. We talked about important issues. Why do bad things happen to good people? Why did he have to get ALS? What happens after we die? How do I manage these ever-increasing symptoms? We began to share our lives as best we could. He made me smile and laugh and I did the same for him. He became to me a surrogate father. Our time together was always sweet. We shared what we could through our limited means of communication, but most of our communication was unspoken. Sitting together watching the news, listening to a sermon on the radio, holding hands, or just sitting and being.
Jim also attended church with me twice. He was very interested in spiritual matters and had many questions for the pastor, who visited him also and answered as many questions as he could. Over the months, I began to see a settled peace in Jim. When I would ask him if he was afraid, he would always tell me no. He was tough. He was brave. I admired and loved him.
On our last day together, I walked in and asked him if he missed me because I had been gone for a few days camping. He stretched his arms out as wide as he could and said he missed me that much. We laughed. He was no longer able to write to me, so I just sat with him. And we would hold hands as he drifted in and out of sleep. I massaged his legs and feet and he relaxed and enjoyed it.
I was blessed to call Jim my friend. Most people believe I helped him, but he helped me just as much.  I believe God brought us together for a purpose. I miss him so much and know I will see him again.

You’re So Brave

The thing is, I’m not brave.  I’m not an inspiration.  I have ALS.  And I have no choice but to live with it.  This disease sucks.  I know I look normal, but I’m dying.  I know that makes people uncomfortable to hear, but I am, and I know it.  Things are constantly changing.  It’s an ever increasing battle.  Fear roars it ugly head and I bury myself in isolation.  Then I pull myself up by my bootstraps and face another day.  It’s hard.  It’s lonely. And I feel bad even complaining because I know other people have it so much worse.

My faith ebbs and flows and I grieve because I’ve let my Lord down.  I snap my fingers at my family and stomp my feet in frustration and I forget that they are dealing with this too.  I want to cry, but often I can’t…..or won’t because then I can’t breathe.  I feel like I am being buried, suffocated, disappearing.

It’s overwhelming.  I can’t swallow the spit I make.  I can’t eat.  Breathing is getting difficult.  I’m tired.  Life is passing me by.  I’m lonely, but don’t want to make the effort it takes to communicate.  My opportunity to travel has passed me by.  Life is going by and soon I will be but a memory.  And it makes me so, so sad.  I’m not brave.  I don’t have a choice.

Hopefully tomorrow will be better.  But today I needed to throw all this up so I could cry and carry on.

Life in a Fishbowl

 

Life-in-the-Fishbowl

I recently met a wonderful woman who is battling tongue cancer.  She experiences some of the same issues as I do with saliva and verbal communication.  The first moment I heard her speak (she sounded like I did when my speech was deteriorating) and saw her with her box of kleenex (does she struggle with saliva too, I asked myself?), I knew immediately God had placed her in my path for a purpose.  It was a special gift.  A comrade.  Someone else who gets it.

Just a few minutes ago,  I asked her if she ever feels lonely even though she is surrounded by other people.  One thing she said struck me.  She nailed my feelings on the head…..she said, “My husband once said it felt like I was inside a fishbowl and he could see me from the outside but could not get inside”.  That’s what I feel like!  All around me there are buzzes of conversations.  Connections.  Relationship.  But no matter how much effort I make with my communication device, I still feel like a fish in a fishbowl watching the world roll by with a front row seat and no way to tag along.

Now, don’t get me wrong.  I’m not feeling sorry for myself.  I’m not angry.  I’m living a good life.  I laugh, I cry, I live.  But it’s just not the same as it was.  Typing to speak is not the same as speaking.  Often in groups of people, by the time I finish typing what I wanted to say, the conversation has moved on.  So I just press delete.  What else can I do?  It is what it is and I have accepted it.

God was good to bring this woman to me.  She understands what’s it like to be in that fishbowl.  And she understands the goodness of God.  Perhaps He placed her in my life to show me the way when I feel weak.  To carry the load when it seems to heavy.  To provide friendship to me from someone who truly understands.  God is good in that way.  He continues to amaze me in that He provides for me in the simplest of ways.  In an instant, my loneliness turned to comfort.

Although at times darkness surrounds me and He feels far away, she reminded me that He and only He is inside the fishbowl with me.  In fact, He lives in me.  He knows me.  She reminded me He is very present in my circumstances and demonstrates His care and concern for me by the people He places around me–the Body of Christ in action.

Thank you, my friend, for helping me to shift my perspective.  For being those very hands and feet you speak about.  For using your pain for His glory, by giving me truth so that I can face another day in my fishbowl.

You Seem So Happy

happiness

Last week, I was talking to someone at my yoga class.  It was a delight to have someone that does not know me, feel brave enough to approach me and have a conversation with my device.  She was friendly and  genuinely interested in my disease and how I seem to be handling it.  One thing she said to me that has stuck with me all week was, “you seem so happy”, to which I replied without hesitation, “I am”.  My quick response shocked even me.  Mostly because a few years ago I could not have said those words and meant it.

As I reflected upon this conversation this week, I was comforted by the fact that the Holy Spirit does reside within me, even when I feel He is far from me.  The past couple of weeks have been difficult for me for a variety of reasons.  And for someone to see me as “happy” is confirmation of the joy I so often speak of that resides within my heart.  It is hard to explain how joy is different from happiness, but joy is true happiness.  Does that make sense?

Before my diagnosis, I seemed to run from one thing to the next to find satisfaction.  What I have learned is that joy and happiness are not found in our circumstances, but rather in a real relationship with a loving Savior, who KNOWS ALL THINGS.

I would never trade this for those things in the world, which seemingly bring joy, but only leave us with an emptiness that can never be filled with ANYTHING except the love of a perfect, heavenly Savior and God.

I am sad.  I am grieving.  Some days I just want to stay home alone and craft.  But no matter what, I can say with certainty that I AM HAPPY.  I hope you are too!

Honorary Daughter

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For , a few short months I have had a dad again.  I am not really sure how it happened but I choose to believe it is the grace of God healing my grieving heart.  Only to have it grieve again.

This summer has been an especially difficult one for me.  I have felt distant from God.  My mind is a jumbled mess of unspoken words.  Frustration at home with communication.  Self imposed isolation.  I have been meeting with two of my friends, working through the  Experiencing God bible study by Henry Blackaby.  It has admittedly been a struggle for me.  Just when I think I know God I come reeling back to reality with the realization that I don’t know Him well at all.  I live my life thinking I CAN KNOW Him if I just do a, b, c.  But it’s not as simple as that.  In order to know God, I must experience Him and to do that I must join Him where He is working.  Two days ago, one of the assignments in the study was to take a walk with God and talk to Him.  Talking to God has been especially difficult for me lately.  For some reason I cannot calm my mind enough to focus on a heartfelt prayer.  I used to pray out loud to help me focus and now I cannot.  It has been a difficult adjustment.  But I took that walk with God.  And I talked to Him.  When I arrived home, I had a tug at my heart to visit my friend Jim.  And another tug to make a meal for his family.  I realized that God was asking me to JOIN him where He is working.

Jim has ALS.  I met Jim several months ago.  It was the providence of God.  His daughter, Shelly works at Kaiser and was talking to a nurse about her father’s recent ALS diagnosis.  This nurse happens to know my sister (also a nurse) and told Shelly that her friend’s sister had ALS and told her about my Facebook Group.  Shelly came home and looked me up and saw that her uncle was one of my Facebook friends.  I met her uncle Paul when I was doing Crossfit.  (small world, isn’t it?)  God had been working on this for years, before my diagnosis was even on the radar. Soon after he put me in contact with her.

As you can imagine, Shelly was overwhelmed with her father’s diagnosis.  Jesse and I offered to meet with the family and answer any questions they had about ALS.  But Jim and his wife were not ready to meet me.  I think they had fear about seeing another person with ALS.  I think they thought I would be in a wheelchair and crippled and it was overwhelming.  But we continued to text each other.  And I invited them to attend my ALS support group with the Greater Sacramento Chapter of the ALS Association.  They finally attended one of these support groups and my connection with Jim was instantaneous.  Oh the comfort, the inexpressible comfort of being safe with a person who understands your grief and loss and hurt.  Jim, like me, has bulbar ALS.  From that day on, we became friends.

Jim is 81 years old.  About a week after we met, Jim developed pneumonia due to aspiration.  This is the major complication with bulbar ALS, when eating and drinking become compromised.  Because of his age, I was worried about him.  I visited him in the hospital and his face lit up like nothing I’ve seen before.  Our friendship was blossoming.

Jim, like my dad, feared a feeding tube.  But I had shown him mine at the support group and he saw how unassuming it was.  I think it eased his mind.  During his stay in the hospital, they were able to place his feeding tube and soon he was on the road to recovery.  After he was released from the hospital, I began visiting him at home.

During this time, Jim was still able to speak.  As his voice deteriorated, I still had an uncanny ability to understand him.  I believe this is because of my own speech loss.  As time passed, he needed to use other forms of communication more and more.  I understood his frustrations.  Technology is difficult for Jim, like it was for my dad.  But I showed him my device and he used it when I visited.  And every time I visited, Jim’s face would light up with the biggest smile.  Being mute in a speaking world is so lonely.  And when we are together, we feel whole again.  I feel at ease, understood even with no words.  We sit and just be.  It is marvelous.  There are no words to describe our bond.

Jim also became interested in spiritual matters.  He wanted to know why bad things happen to good people.  He wanted to know why he has suffered so much loss.  He wanted to know how to get to heaven.  He wanted to go to church.  I was able to bring him to church twice.  He had questions.  He asked my pastor to visit him and we both met with Jim and talked about these things.  But there are no answers to our why’s.  Jim accepted Christ while visiting church with his brother.  He told me he was at peace with dying.  He was not afraid.  I began to see a settle peace with Jim.  A surrender.  A letting go.

Well, back to two days ago……I had been camping for several days so when I came in, I asked Jim if he had missed me.  His face lit up with a huge smile and he opened his arms up as wide as he could, indicating that he missed me so, so much.  I sat with him holding his hand, stroking his arm, massaging his feet.  You see, Jim is on his final journey.  His breathing muscles are becoming too weak.  He could not write.  He could not type.  But we spoke in our silence.  For several hours I sat with him as he drifted in and out of sleep.  I was reminded of my fathers last days.  In these moments, I realized that I was the daughter he needed and he was the dad I needed.  A gift from God in our grief.

Last night, I received a text from Shelly.  Dad is unresponsive, the end it near.  I went for a visit after my yoga class.  He is resting comfortably, breathing shallow….just like my dad.  As I sat, stroking his hand, I wished I had the words to whisper to him how much his friendship has meant to me.  I wished I could tell him everything is going to be ok and that I loved him.  I wanted to tell him to make sure he understood.  I wanted to sing to him like I sang to my dad.  I wanted to tell him I would meet up with him again in heaven.  Oh what a glorious day that will be for us both to have our first verbal conversation!

Shelly told me I am officially adopted into the family.  I may not see the total picture and understand God’s ways, but I am so glad that this week I joined Him where He is working.  In the life of my new friends.  May others see His majesty amidst all this sorrow.

I will be by Jim’s side until he transitions into the arms of Jesus.  We are friends for eternity.

 

The Beauty of Books

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I grew up loving to read.  As an adult, I find I get far too distracted and busy to just sit still and enjoy a good book.  Especially nowadays.  It’s weird, I am rushing around doing all that I can with my hands while I can.  I don’t even know if my hands will ever be affected, but that possibility looms around in my inner thoughts.  I marvel at the fluidity of my hand movement.  I have become grateful for the little things.

But, back to books…..Recently I have become interested in junk journals.  Making books that look old.  I have used an old book spine and made a book that I love and will be auctioning off in my ALS auction.  Recently, I enrolled in an online bookmaking course where I will make the entire book from scratch.  This too, I will auction off.  When I enrolled in the course, I was admitted into a PRIVATE Facebook group of other bookmakers enrolled in the course.  I was so excited to be a part of this community.  I introduced myself and gave a brief history about my illness and my journey into the world of junk journals.  One woman in particular private messaged me and wanted to join my Facebook group “Kelly’s Journey with ALS”.  Her name is Claudia.

You see, Claudia lives in Germany and for some reason she reached out to me in the most marvelous way.  She had a wonderful idea about inviting the other participants in our private Facebook group to donate individual pages for the book I will be making for the auction.  She then joined my Walk to Defeat ALS Team as a virtual walker.  Heck, I can’t even get my friends and family to join my team.  We have been in contact nearly every day since, sharing life, encouraging one another, and she even has made me videos showing me some tricks she has learned bookmaking.

As I reflect upon our budding friendship, I am so thankful to a God who continues to bring people into my life where emptiness has set in.  Friends of old have fallen to the wayside of my journey along the ALS road, but new friends have come.  Stronger friends who are not afraid of my disease.  Friends who know no other me than the me I am today.  The me who can no longer speak.  Where conversations are slower.  Or just in text.

It amazes me that I can form a friendship halfway across the world with a woman I will probably never meet in person.  She is kind and thoughtful.  She is giving.  I hope I can be that kind of friend to others.  She is a blessing to me.

Books transport us into a different time.  They let us escape.  And in this case, they brought me the most unexpected friendship.  That’s the beauty of a simple book.

Hurting People

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Hurting people, hurt people.

I know because I’ve done it.  We all have.

Have you ever been shunned, ignored, or treated as if you were insignificant?  Have you been on the receiving end of harsh words?  Been snapped at for no reason?  This can be especially hurtful when done by someone you thought cared about you.  What did I do?  Why is this happening?  It is incredibly hurtful.  In my insecurities I immediately resort to assuming I did something wrong.  Should I confront them?  Should I ask if I have done something wrong?  I’ve asked before and been whip lashed with hurtful words about how everything isn’t always about me.  I know it is just that “people-pleasing” part of myself that wants to be loved and to make things right.  If I’ve done something wrong, I want to rectify it.  But I am learning to examine myself and if I KNOW I did not do anything offensive, I am learning to forgive.  And forgiveness can happen without that other person even knowing about it.

What I have learned in my **almost** 50 years on planet earth,  is that hurting people, hurt people…..often unwittingly.   The Lord is teaching me to just take care of my side of the street.  I cannot control the actions of others.  He is teaching me to have empathy and love despite being rejected.  He is teaching me to react more and more like He did when He walked this earth.  It isn’t easy.  My human nature wants to lash out and hurt back.  But what does that resolve?  That other person is still hurting and I would only be hurting myself in the process.  So I choose to pray for them and love them and be there for them if they ever reach out to me.

I cannot force others to love me.  To value me.  To see me.  But I CAN choose to love them, value them, and see them.

So that’s what I am going to do.

Open your eyes and look around you.  To those you know and those you don’t.  Sometimes hurting people, hurt people and they don’t even know it.  Be kind and see beyond the offense.  And remember, LOVE covers a multitude of sins.

Ungrateful Heart

My day did not begin as I had anticipated.  This morning I have had an unusually difficult time with managing my saliva.  Recently, I have been using scolpamine  patches (motion sickness patches) to dry up my saliva.  They actually worked very well until a couple of weeks ago.  I developed a perfectly round, raised rash right behind each ear, where this little patch has alternately resided since early February.  So needless to say, I was not in the right frame of mind to begin with.  I even canceled a date I had planned with a good friend.

The frustration mounted when I took Rebecca to work.  She needed to stop and get lunch for today since we did not have any left overs from last night.  Typically, this is no problem.  Rebecca wanted Baldo’s so we decided to use the drive through and she would call out the order, since obviously, I am mute.  As I pulled up to the window, he said the total was nineteen something.  I thought that sounded high.  Rebecca had ordered a breakfast burrito and she ordered me some beans and cheese.  I tried to quickly type to Becca that it seemed too high for those two items.  The man momentarily handed me the  heavy bag and a receipt for $76.62.  In the bag, were two burritos and the beans.  I motion for the man and try to get Becca to explain the issue.  She doesn’t know what I am trying to say……I type to the man, who begrudgingly rolls his eyes and takes the food and receipt back.  By this time, I want to cry.  It is the moment my self pity began to sink in.  The window opens and the man hands me the food and two receipts.  I am confused.  Did he issue the refund of the $76?  I will myself to speak, of course which I cannot, and I look to Becca for help.  She has no idea what I need.  (Now keep in mind this is her card).  The man looks at me with a quizzical look on his face and I realize my attempts are futile, so i wave “nevermind” and pull forward.  I park, type it all out to Becca and send her in the inquire about the refund.  When she returns, I admonish her for not having compassion for me.  She is hurt, I can tell, but me in my self pity doesn’t care.  Doesn’t she see how much I am suffering?  Why doesn’t anyone understand?  Where is her compassion?  I type these hurtful things to her.

So…..I drop her off with no further attempts at communication.  I just want to be alone.  I drive off as tears of sorrow stream down my face.  I begin asking God, “Why me?  This is cruel and unusual punishment, my indignant self screams inside.  I pull it all together, stop at the store for some items for dinner and go home.

As I begin to put things away, I open the refrigerator.  How did this fridge become so dirty?  Why haven’t I noticed this before?  This is disgusting I say, as I frantically begin unloading the refrigerator and start cleaning it.  I escape my self pity as I focus on the cleaning. I forget, for a moment that I am feeling sorry for myself.  I am focused on the task at hand.  I rearrange some shelves and wonder if my OCD husband is going to change it back when he gets home.

Whew.  Finally.  I am done.  Now, what I really need is to spend some time with God.  So up to my loft where I immerse myself in my BSF study and read Samuel’s beautiful prayers to God as he brings the ark of the covenant into the temple that he so wondrously built for God (1Kings 8).  My heart begins to melt as I see the greatness of my God and the heart of gratitude that Samuel has for Him and the smallness of my insignificant temper tantrum over my disease.  I thank him for quieting my mind long enough to feel the warmth of Samuel’s prayers.  But I still am feeling down as my saliva continues to escape my mouth whenever I remove the wash rag.

Next, I just want to go sew and clear my mind.  I am intent, making sure every point is precise, every seam is aligned, striving for the perfection that eludes me.  My mind relaxes and I begin to pray.  I often pray while I sew.  In the quiet, solitude my mind unravels before Him.  And it hits me.  I know it is His Holy Spirit.  He whispers why are you so ungrateful?  Look at how your hands perfectly perform the task in front of you.  Your feet move swiftly across the room.  You can brush your hair out of your face.  And you can brush your own teeth.  You can go the the bathroom on your own.  You can drive anywhere you want to go.  You can cook, and clean and laugh and jump and dance.  There are fellow PALS who cannot do all of the things you are still able to.  Why are you so ungrateful?  Trust Me.  You do not need to know why.  I am transforming you, I am forging you in the fire.  Trust Me.  I love you.  Be thankful and rejoice.  And know that I am with you always.

BAM!  My rebellious, indignant, entitled heart melted before the grace and mercy of my Lord.   Who knows my heart.  Who has compassion for me.  Who died to redeem me from my sinful nature.  I have so much to be grateful for.  This suffering is for but a moment and then I will see Him face-to-face.  Thank you Father, for Your correcting love that never allows me to stray too far away from you.

So, for now, the self-pity is dissipating.  Great is Thy Faithfulness.

10 Things I Want You to Know

I thought I would share the top 10 things that are good to know about me and my disease.  I find that either people tip toe around the fact that I have ALS, ignore it altogether, or are so uncomfortable things feel uneasy.  So here are a few tips:  sit back, relax, and enjoy the journey with me.

  1.  It is okay to eat in front of me.  I do not mind at all.  I don’t miss food as much as I thought I would.  Just don’t take huge bites with little chewing.  Chew your food and enjoy it.  I like to see that much more than a hurried gulp with little enjoyment.  Savor every bite!
  2. It is okay to cry with me.  I am mourning and if you are too, let’s mourn together.  We all need a good cry and it helps me to know I am not alone in my grief.
  3. Don’t be afraid to ask me specifics about my disease and/or my individual struggles.  It helps me to talk about things and it might help you have more empathy.
  4. Yes, I understand that I look “normal”.  Just because I look healthy, doesn’t mean I am fine.  I struggle with things that are invisible to others, but wear me down and/or tire me out.  Just managing the saliva production takes a lot of energy.  I may not be able to politely manage this in a visit and may need to resort to stuffing a rag into my mouth so I can rest.
  5. Short visits work better than long visits.
  6. If I have to cancel at the last minute, don’t take it personally.  Sometimes I am just too tired.
  7. When using my communication device, please refrain from trying to read over my shoulder.  I spent a lot of time banking my voice and I want to use it.  If, however, I turn my screen towards you, I am inviting you to read.  I understand that reading is faster for people, and people don’t like too much silence, but it is really important to me to still have a voice.
  8. Don’t be alarmed if I snort when I laugh.  I can no longer control my vocal cords like I used to, so when i laugh I snort, grunt, and make all sorts of weird sounds.  Just laugh with me.
  9. I really don’t mind if you do most of the talking.  I love to hear what’s going on, and it saves me energy.
  10. I have ALS, but I am still me.  Don’t be afraid of my disease and stay away.  If you want to see me, come see me.  Don’t wait until it’s too late.

Friendship in Unexpected Places

Me and Kim

Two years ago last May my mom passed away after only a short 11-week battle with cancer.  Those 11 weeks were filled with happiness, sadness, laughter, crying, fatigue, frustration, sorrow, and many, many more emotions.  Of course, at the time, we did not know we would only have 11 more weeks with mom.  Luckily, I have three dedicated sisters and we rotated 24-hours shifts with my mom so she was never alone.  Reflecting on this time, my mom was the happiest I had seen her in years because she had constant companionship and love.  But I am not going to lie, it was painful and hard and exhausting.  Not to mention I was just exploring the possible causes of my recent slurring of speech, wondering could it really be ALS.

During this time, I was also working full-time.  After mom passed away, I was overcome with grief.  I would cry at inopportune times.  I didn’t know what to do with my emotions over her death and the emotions about my own looming prognosis.  Then I remembered that Kaiser Hospice, who provided excellent care for my mom during her 11-week battle, offered bereavement counseling.  So I made the appointment, a bit apprehensive about what it would be like.

My bereavement counselor’s name was Kim.  I immediately sensed she was a kind-hearted woman with tons of compassion.  As I recounted my experiences of grief with her and shared my fears about my own health issues, I felt at ease with her.  As I processed previously unspoken hurts and emotions, I experienced her empathy and could often see tears of compassion in her eyes.  I do not really recall exactly how many sessions we had, I continued to see her until I took a leave of absence at my work in Vallejo to deal with my health issues.

Much to my surprise, I received a phone call from Kim one day telling me that she was conducting a bereavement group in Vacaville and wanted to stop by and see how I was doing.  I just assumed that since she knew I didn’t want to drive to Vallejo for continued sessions, she would bring those sessions to me.  We continued to meet at my home whenever she was in Vacaville.

Each time we met, our time together felt less and less like a “session” and developed instead into an unexpected friendship.  With Kim, I am free to be fully me.  I am free to be transparent, honest, raw.  She understands my emotions and is not afraid of my tears.  She doesn’t ignore the fact that I have an awful disease or pretend that “all is well”, but instead has helped me process my grief as I encounter new losses.

Then one day, she informed me that she was retiring and moving to Louisiana.  I was heartbroken.  How could I lose such a marvelous friend now?  Why another loss, I asked myself?

Then I remembered telling Kim about the Open When Box I made for my mother for her last Mother’s Day.  I wanted to give my mom something meaningful.  I had heard about it my from my friends’ daughter.  For those of you who are unfamiliar with this, it is simply a bunch of letters and/or small gifts with a simple instruction on the front of each envelope to “Open when……”  For example, “Open when you need to see something beautiful” and I put in a note along with a compact mirror, telling my mom to look at how beautiful she was to me.  So I decided to make one of these for Kim’s going away gift, because she had been so touched by the story of the one I gave to my mom.  When we met, we had our usual 2 hour chat.  Then I presented her with the Open When Box.  When Kim began to open the box I could tell she was excited about receiving a gift, but as soon as she opened it and saw all of the envelopes, she realized that it was an “Open When” box.  She immediately burst into tears.

So off Kim went, assuring me that whenever she opened an envelope, she would call me to let me know.  Kim has told me she cherishes her box of letters and opens it, flips through the closed letters, and then closes the box.  When I asked her why she doesn’t open them, she told me that she is purposely not opening them because I need to be around for a LONG time so she can share the opening with me.  So, she is making them last.   I think she has only opened 2 or 3 in the year and a half or so that she has had them.

I honestly thought that our friendship would wane with the distance.  But God is so good!  Every time Kim comes back to California she contacts me for a visit!  We pick up where we left off.  She is patient with me and my computer voice.  She is comfortable with my tears.  She is my very unexpected friend.

I am thankful that she sought me out.  I am grateful for her wisdom.  I am filled with joy at her smile and her laugh.  I am blessed beyond measure.

Be bold.  Seek unexpected friendship.  Bless someone with the gift of you.

Kim, I will hang around as long as possible to enjoy those envelopes with you!  I love you!

Undignified

UndignifiedI have heard in the ALS community that this disease can be very undignified.  I have not, until recently, experienced the first pangs of this undignified disease.

You see, my tongue is now totally dead.  By dead, I mean useless.  I cannot lift it.  I cannot move it side to side or up and down.  I cannot lick my lips or touch my teeth.  It just lays lifeless in my mouth.  Ironically, I can still feel it.  It feels normal.  But no matter how much I will it to move, it just won’t.  But what does a dead tongue mean, you ask…..For starters eating.  Eating becomes an impossible chore with a useless tongue.  Do you know how much work that little sucker does when you eat?  If not, just close your eyes the next time you take a bite of food and really pay attention.  It is mind boggling.  I often sit back at family gatherings and just watch the ease with which people shove ungodly amounts of food into their mouths without a thought in the world.  Two chews and down it goes….really?  Oh what I wouldn’t give for that ability!

Second, brushing my teeth is now a chore of epic proportions!  Hold it in your mouth?  Forget it, it runs straight down my chin.  Spit?  Yeah right, where’s my suction machine?!  Floss….can I grab that damn floss amidst the river of spit that runs across my lower teeth.  Ugh.  If you know me, oral care is VERY IMPORTANT to me.  And it has become a new ritual to keep these pearly whites…..well…. pearly white.

Third, that small rudder of a tongue helps you swallow your saliva.  Imagine that!  Without the use of it, I am destined to the most undignified symptom of all…..DROOLING.  Up until now I have been able to successfully manage it with two drops of Atropine  (eye drops, go figure!)  underneath my tongue.  (which I undoubtedly have to lift up with my finger).  Unfortunately, these drops don’t seem to be working as good as they used to.  No matter how hard I try, I cannot control that dribble that appears in the corner of my mouth…..Or when deep in thought, the large dribble that escapes my mouth and down the front of my shirt.  At home, my family has grown accustomed to the perpetual paper towel stuffed into my mouth or the washrag hanging limply from my lips.  **Sigh** Who would have thought that the once career minded, able-bodied woman would become an undignified drooler?  Certainly not me.

But even as I sit here writing this monologue of doom, what enters my mind is the refrain from the song It is Well by Bethel Music:

And through it all, through it all
My eyes are on You
And through it all, through it all
It is well

And through it all, through it all
My eyes are on You
And it is well with me

But how can this be?  How can I, in a moment,  go from the pit of despair to marvelous worship and peace?  Even my mind cannot comprehend the goodness of my God.  Draw near, cry out, ask, just do it.  So every day, I make it a PRIORITY to spend time with God in His Word.  It is a discipline that started as a difficult task to one that tugs at me…..pulls me to my little desk for study…..that my heart yearns for every day.  A place that I find,  it is well.   To a place where I am known.  Where I am loved.  Where I am seen.  Where I am heard.  It is my food.  The food that no longer requires a tongue.  A place where I am not required to have spoken words.  A place getting to know the God who knows it all.  Who gives me breath.  Who has a purpose for my pain.  I can’t explain it.  I can’t duplicate it.  I don’t understand it.  But it is real.  And it is powerful.  And it restores my dignity.

What purpose is there?  Why is this happening to me?  Why, why, why?  That is the question bound in the human heart when life is hard or painful or difficult.  I don’t know why.  And I really don’t care to know anymore.  God knows and I trust Him.

Freedom

 

 

Can’t I Just Take a Pill for That?

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When I was young, I was a terribly picky eater.  Being hungry was a bit of a nuisance to me.  I remember thinking, “I wish I could just take a pill to eat.”  How foolish that statement sounds right now.

As the years rolled by, I began to venture out in my eating habits.  Jesse and I have become what people would consider “foodies”.  We talk about good food, we cook good food, we go out to eat good food.  And all this good food makes us dance our happy dance.  No joking, we really dance this little jig around the kitchen when we are about to devour our latest and greatest recipe.

Unfortunately, eating is becoming more and more challenging.  You would be amazed at how much work the muscles in your mouth and tongue do to chew and swallow just one bite of food.  My tongue has become so weak that I can no longer move food around my mouth to push it to my teeth to chew.  I have to use a fork to manually move it (several times in fact) for each bite.  I can no longer chew on my right side, only on the left and when doing so I constantly bite the right side of my lip and/or cheek.  Meals are becoming increasingly long and unenjoyable.  Even the food doesn’t taste as good.  If the food is too soft, it gets stuck on the roof of my mouth, which is, in the words of my new bulbar ALS friend,  “no mans land.”  This requires a quick push with a finger or fork, whichever is most handy at the time.  The back of my tongue has become increasingly weak, so much so that often the food I am trying to swallow gets “stuck” at the back of my throat.  Several turns of the head and hard swallows later it finally goes down.  All this I, for the most part, endure in silence.  I do not want my family to know how really hard it is and feel sorry for me.  I try to be strong.  But the truth is, it’s just not worth it anymore.  Trying to get enough nutrition to maintain my weight is not fun.  It’s work.  And it reminds me of when I was a kid and just wished for a pill to take away my hunger.

But hope is not lost.  Monday I go in to get my feeding tube placed.  I struggled with this decision for several weeks.  I thought when the time came, it would be easy.  No big deal, I would think, Dad had one.  Well, as I found out, it was a bigger deal to me than I thought.  Sure I fear the pain, but I know that will subside.  It’s the big, bulky tube smack dab in the middle of my belly, that doesn’t sound very becoming.  Admittedly, my vanity is rearing its ugly head.  Will I be able to wear cute shirts anymore?  Or will I be banished to the over-sized t shirt?  But realistically I think the hardest part of coming to terms with this next season, is the reality that my disease is progressing.  This disease is having it’s way with me, no matter what.  And it’s just so crazy because as long as I’m not talking or eating, I feel so ALIVE.  I forget that I’m dying.  Yeah, sure, I know…..we are all dying.  But I know what this disease does to people.  It steals and ravishes.  It imprisons.  It limits.  Not to mention the toll it takes on our caregivers.

I’ve researched and talked to other PALS who have already walked down this road and have a feeding tube.  I am more settled with my decision.  I am looking forward to eating food for pleasure again and using the tube when eating is just too laborious.  It will take the pressure off of trying to meal plan soft, easy to eat foods.  And ironically I will somewhat get that wish I had when I was a little girl.

I am in no way feeling sorry for myself.  Just grieving another natural loss.  I had a massage today and my friend and masseuse commented at how strong my body still is.  For that I am grateful.  I am thankful that I still have the ability to write, type, walk, dance, hold my grand babies.  I may be losing some pretty significant things, but I have gained so much on this journey.  Insight, love, compassion, empathy, friendships.  I am a different person than I was two years ago.   And although I wish I didn’t have ALS, I am thankful for the lessons I’ve learned having had this disease.

I encourage everyone who is reading this to ENJOY your life.  Light those candles.  Drink that “special” bottle of wine, laugh with friends and family.  Forget about the dishes or the mopping that needs to be done.  Eat good food.  Take care of your body.  Give more than you receive.  Make this world a better place.  Because when you take your last breath I guarantee you won’t be saying “Gee, I wish I had kept a cleaner house or worked more.”  You will be saying “I wish I had loved more.  I wish I had forgiven more.  I wish I had lived more.”

Lions and Tigers and Bears, Oh My!

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“What did you say?”

Toto, we aren’t in Kansas anymore!

The reality of this awful disease has been smacking me in the face lately.  Every where I turn, there is a reminder that my disease is progressing.  I can’t escape it.  The bipap, the suction machine, the cough assist, the thickener, lengthy meals just trying to move the food to my teeth to chew, drooling, and most importantly, every time I open my mouth to speak.  It’s still rather shocking to even me, I can’t imagine what others think.  It sounds so utterly normal in my head, but then out it comes….a garbled mess, the quizzical looks, the “I don’t want to ask her what she said” nod of understanding.  People, I know when you don’t understand me, so why don’t you just ask me to write it down?!?

Me and Jesse have been arguing more than normal.  We don’t want to, I know, but it is becoming so frustrating.  I know he is safe for me, so I guess I lash out more at him.  It’s not fair, I know.  I don’t mean to.  But I do.  Grace and forgiveness are abundant in my home right now.  Thank goodness for cleansing tears to wash away some of the frustration.

I attended my ALS clinic appointment last Thursday.  I will start with the positive.  In the waiting room I met someone who TOTALLY understands me.  I was talking to my sister and a woman across the room made eye contact as she brought her hand to her heart.  She then began eagerly digging through her bag and found her boogie board.  (for those of you who don’t know what a boogie board is, it is a board that you can write on and push a button to erase.  A great tool for those with bulbar ALS).  She crossed the room and we embraced.  There was something beautiful about it.  Knowing she knew EXACTLY what I’m going through.  We quickly began using our boogie boards to speak to each other.  The respiratory therapist had to practically peel us apart to call me into the room for my appointment!  Luckily, we were able to exchange numbers and I was overjoyed to make a new friend!

My clinic went fairly well.  My respiratory (which I am most worried about) was still in normal range.  It went from 103 to 95.  (Normal is 80-100).  This is good news.  I was really striving for the 100 range, but for some reason my stupid epiglottis was not cooperating and impeded my ability to breathe properly.  The perfectionist in me was not happy with a 95.  LOL.   Next my doctor arrives.  She indicated that she was surprised that my speech has declined as much as it has since my last appointment.  She gingerly approached the subject that although she cannot say for certain, the Radicava (infusion) may be the culprit.  She said that based on my previous trajectory of decline, she was concerned that the Radicava may not have slowed progression as it is purported to do (and may possibly be the cause of increased progression).  Unfortunately, because ALS is such an unpredictable disease, she cannot say with certainty that the Radicava is the cause of the accelerated decline in my speech.  It could simply be my rate of progression.   Surprisingly two of her other ALS patients had clear decline on the treatment and she stopped the infusions on them.  Since she cannot determine for certain with me, she left the decision up to me on whether or not to continue.  Later that evening, Jesse and I decided to stop the infusions for now.  My Dr. did say I may resume in the future if I choose to.

Then the dreaded speech therapist and nutritionist enter the room.  Ugh.  I know this is the hardest part of the appointment.  Discussion and examination ensue.  The topic of a feeding tube comes up.  Apparently, ALS speeds up your metabolism.  As it now stands, I am still eating and drinking and trying to maintain my weight.  I’ve had to add a daily Ensure drink for extra calories.  But because my tongue and soft palate have weakened, everything I eat or drink becomes a challenge and takes a lot of work to manage.  I may be eating less due to the laborious nature of chewing.  Coupled with the increased metabolism they are worried about weight loss.  Since I’m small, a small amount of weight loss of 5-10 pounds could be significant.  Additionally,  I’m beginning to dread the idea of eating or drinking on some days.  And weight loss is a no-no with ALS because it can trigger faster progression.  I asked them their professional opinion on the feeding tube because it sounded ludicrous to get one now when I’m still eating.  They tell me they would suggest it now, to take the pressure off of the labor of eating.  They explained that I could get the majority of my nutrition and hydration from the tube and eating can become more pleasurable.  It would also allow me time to get used to using it before it is completely necessary.  It is a difficult decision.  I thought that when the time came I would not have a problem with it.  I am familiar with a feeding tube from my dad having one.  But I am having a hard time.  I just don’t know if NOW is the right time for me.

The rest of the appointment was thankfully unassuming.  I don’t need OT, PT, Psychiatry, etc.  I am so thankful that this awful disease has not begun to rob me of any physical use of my body.  See…..even I can find gratitude in even the most dreary of places!

I have been spending a lot more time alone, which I don’t mind.  When I am surrounded by quiet and don’t have to talk, I feel normal.  I am able to forget, for a bit, that I have ALS.  I keep busy.  I read, write, pray, craft, cook, sew.  I enjoy these times the most because I am able to commune with God in my head and I don’t have to feel the frustration of difficult communication.

I miss going through the drive thru when I get a craving for fast food, buying a coffee when I’m by myself, and talking on the phone.  Right now I’m getting used to my assistive tools with family, but they are more challenging in public.  My sister Stacey is going to “help” me brave the coffee shop to order with my assistive talking device to get me more comfortable with this.  She has been my ever present rock throughout the past year and a half.  I am so thankful that God has allowed her to walk with me on this journey.

I have so much to be thankful for amidst the heartache.  I have THREE beautiful grandchildren that I can hold and love on.  Two of them are brand new granddaughters, Grace Kelly-Ann is 2 months old and Mila Beverly is 2 weeks old.  My big boy Noah Riley is 4 years old and a constant joy to be around.   These little people are such precious gifts to me and Jesse!  I am thankful for the friends who have hung in with me, providing emotional support and prayer.  I am thankful for a husband who carries not only his burden, but mine as well.  I am thankful for my children who make family night dinners meaningful and special.

Please pray for us.  Jesse is considering taking a leave of absence so that we can get control of the new normal and alleviate a bit of stress.  Pray that God will reveal Himself to us daily, give us strength, peace, joy, and laughter.  That we won’t let ALS defeat us but that we will live each day with courage and love.  That we will learn to communicate better and it won’t be such a burden.  And that most of all, we will create lasting memories and a legacy for our children and grandchildren.

 

Amazing Grace

My second grandchild was born on April 2, 2018 at 9:34 am.  She weighed 6 lbs. 6 oz. and was 20 inches long.  I was blessed to have witnessed the miracle of  her birth firsthand, by my daughter Brittany’s side.  Her name is Grace Kelly-Ann Kyde and she is so perfect and beautiful.  I pray that God does indeed bless her life with Grace and Mercy!

Last night, we had all of our children and grandchildren over for a family meal.  It was a night filled with laughter and joy as we all marveled at the new life He has blessed our family with.   However, as I struggled to communicate, I was overcome with sadness.  Sadness that my grandchildren may never hear me speak.  I had so many dreams about what kind of a grandparent I would be.  I purchased children’s hands-on activities to teach about Jesus’ birth and resurrection years ago.  I wanted to create memories for these special holidays.  But this year, I had to have someone else read the stories to my grandson, because I just couldn’t do it.  I dreamed of hosting a “Granny Camp” when my grandchildren were old enough, where I could spend quality time with them.  Creating memories that would last a lifetime.

Holding Grace and looking into her face, it broke my heart that she may never know my voice.  Trying to talk to Noah and seeing the first indication that he can’t understand me wounded me.  I worry that in the future, they may dread coming to see me and think of me as “scary” grandma who can’t talk.  All my dreams for what grand-parenthood would look like are just being crushed.  And it just outright makes me sad.

It is at times like these that I have to choose to trust God’s plan for my life.  The path that he has carved for me to travel may look very different than the one I’ve conjured up for myself.  I guess it’s ok to be sad.  I can still trust God’s goodness in my grief, for He most of all, knows my humanness.

Things for me are changing more rapidly than I would like.  Articulation is increasingly becoming more difficult, so I am having to repeat words frequently or write them down.  Eating, at times, seems so much of a chore, I would rather forego it.  I’ve lost a slight amount of weight and need to get extra calories with Ensure.  I know that the dreaded feeding tube is not too far in the future.  I have succumbed to the grim reality that my water must be thickened so that I don’t choke on it.  My mouth muscles are so weak, I’m beginning to drool.  (I know….GROSS).  But these are my realities.  Many around me do not see the struggle.  But the struggle is real.  And it is frightening.

My only defense is to look to Jesus for my strength.  I fervently seek His face daily as I draw near to the only source of strength that is eternal.  There is no time to waste in getting to know better the Author and Perfecter of my faith.  His mercies are new every morning!  Great is His faithfulness.

So today, I am thankful for my beautiful Amazing Grace!  And I am looking forward to meeting Baby Mila, when she arrives sometime in June.  I will be the best dang
Ga I can be talking or not…..and leave the rest to my Creator.

Amazing Grace, how sweet the sound- that saved a wretch like me.
I once was lost but now I’m found, was blind but now I see.

Twas grace that taught my heart to fear, and grace my fears relieved,
How precious did that grace appear, the hour I first believed!

The Lord has promised good to me, His word my hope secures
He will my shield and portion be, as long as life endures.

Through many dangers, toils, and snares, I have already come
Tis grace hath brought me safe thus far, and grace will lead me home

When we’ve been there ten thousand years, bright shining as the sun
We’ve no less days to sing God’s praise than when we’d first begun.