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

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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?

jetsons

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!

dorothy-big

“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.

Ditch the Mascara

Somehow this morning, I knew that putting on non waterproof mascara was going to be a problem.  I only put it on so I wouldn’t look as bad as I feel on the inside.

I don’t know what’s wrong with me lately.  I just feel like crying.  I feel sad.    But there’s really nothing drastically different to make me feel this way.  I just want to cry.  The problem is, nobody wants to be around a crybaby, so I try to hold it in.  I feel like I’m going to explode!  I feel like running away to someplace totally deserted and scream to the top of my lungs.  No people, no phones, no civilization.  I don’t want to hear anything but quiet.

 

Maybe it’s the weather.  I don’t know.  I just keep on doing what I know to do and pray this fog lifts.  That God turns my mourning into joy.  Today is just my day to cry.

I know without a doubt that I am surrounded by people who love me and are praying for me.  I am so blessed.  I hope each of you know how much I love you.  Please don’t take it personally if I decline a coffee or lunch date.  Or cancel last minute.  It’s not that I don’t want to visit.   It’s just that the thought of having lengthy conversations is just too much for me right now.  Maybe that’s part of my sadness.  The realization that things aren’t ever going to be the same for me.

So if you happen to see me out and about and I look like hell….it’s not because I’m sick….it’s because I decided to ditch the mascara.

That Beast Called Grief

grief

Webster defines grief as:  deep and poignant distress caused by or as if by bereavement (the state or fact of being deprived of something or someone)

In the past, whenever I heard the word grief, I would think of mourning over the death of someone.  I am learning, however, that we grieve not only over the death of friends and family, but sometimes also the loss of jobs, relationships, dreams, abilities.

And grieving doesn’t have a time limit or rules.  No one gets to tell us when grieving should occur or when it should be over or what it should be about.  Grieving is a process as individual as each of us.  We all grieve, we just may not recognize it as that.

Grief can be overwhelming, especially when those around us do not understand.  Oftentimes there is no safe place to share this grief and it gets stifled and bottled up.  But, it can’t stay there.  It won’t stay there. Grief must be released in some way or it will consume us.

For those of you who don’t know, I’ve suffered many losses over the past six years.  First, my father was diagnosed with ALS and four short months later that ravaging beast took him.  So devastating.  Too quickly.  I wasn’t prepared.  Then I lost my beloved dog of 12 years, Claire.  I was awoken at 5 am to her convulsing…..I rushed her to the hospital to learn she had a brain lesion, was blind, and there was nothing that could be done.  I sat alone in that room and had to make the awful decision to let her go.  I left that place without my best friend.  Then along came Ginger.  The dog I rescued who was skinny, scared, starving.  I nursed her back to health.  She loved me so endearingly.  I only had her a short time.  She was a bonified scaredy cat and during a walk one evening, was scared away, leash still attached, as Jesse fought a dog off of Zeus.  She disappeared and was found two weeks later by a hunter in a field a couple of miles away from our house.  My poor baby died alone on a cold November evening.  Next, my mother’s devastating cancer diagnosis.  The 11 weeks she lived are filled with precious memories.  I was not ready to lose her.  Why, oh why?  Then last December,  my beloved surrogate dad, Frank was diagnosed with cancer and passed away within a couple of weeks, followed by my own ALS diagnosis.  April rolled around and my beautiful grandma Beulah went to be in the presence of the Lord.  The loss of my job, social interaction with co-workers, friendships I thought existed but are no where to be found, my voice, my ability to eat certain foods…..

So much loss.  How much more can one handle?   Just when I think I have a grip on my grief, a conversation, a thought, a memory, a new loss……. and it all rises to the surface and I become a blubbering fool.  But….I am so thankful for those safe friends who are able to withstand the wave of grief that comes crashing down on me at the most inopportune time.  For the friend who does not retreat, but listens without judging.  The friend who offers prayers without ceasing and let’s me feel the grief that washes over me.  The friend who is unwavering, nonjudgmental, loving, and kind.  The friend who doesn’t think in their mind, “get over it already” or try to give me a solution.

I don’t even understand my own grief.  I’m not asking others to either.  I don’t know when or if it will ever end.  And it doesn’t matter.  Because today I may be okay and tomorrow I may grieve over the fact that I can’t eat soup anymore.   Or that I can’t visit people as much as I would like because it’s just too hard to talk that long.  Or a song reminded me of my mom.  Or that I can’t call my dad and ask him for advice.  Or Facebook pops up with an old picture of my faithful canines-Claire and Ginger.   I know I have so much to be thankful for.  I do have joy and peace that comes from God amidst this suffering.  But having joy and peace does not mean that I still don’t grieve.  Because I do.  Everyday.

Just remember–let people feel what they are feeling.  You don’t have to have a solution.  Just lend an ear.  Pray a prayer.  Send a note.  Give permission to grieve.  Grieving is not a sign of weakness, it is a sign of strength.  It means we are PROCESSING what is going on and that is healthy.  If I cry, I’m crying because I’m processing my feelings, it doesn’t mean I’m feeling sorry for myself.  If we allow ourselves to process our feelings, the waves begin to calm and reside and a bit more healing is realized.

The Beast is real.  It serves it’s purpose.  So next time you encounter that grieving friend, acquaintance, co-worker, family member….don’t minimize the grief.  Just let it be what it is.

2 Corinthians 4:17
For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison.

 

Did You Really Just Say That?

The past couple of weeks I have been dealing with my personal reaction to some really insensitive remarks/conversations.  One I heard directly and one indirectly, but both have really thrown me for a loop.  I’ve had to wrestle with feelings vacillating from hurt, to anger, to sorrow.  They’ve made me cry for myself and cry out to God.  Are people really so insensitive?  Or am I just being too sensitive?  Whatever the case, I can’t shake the experience, so here I am at 5:30 am unable to sleep.  I need to get it off my chest.

I’m very, very tempted to just recount both situations in detail, but what will it really accomplish?  People are who they are.  Some are so selfish and self centered they cannot see past their own foolishness into someone else’s pain.  I feel sorry for these people.  Others are so deceived by bad theology that they have made themselves gods unto themselves.

I have ALS.  It’s an awful diagnosis to receive.  If you think I did something wrong to deserve it or that God is punishing me somehow, or if I just tell Satan that he has no control over my genetics-you don’t know the God I know.  Maybe before you assume that I have no faith or I’m not praying the right prayers or trusting God enough you might want to know me a little better.  You may want to ask me about my walk with God.  You may want to be quiet for just a minute and listen rather than to “tell” me how things are.  You don’t know me very well do you.  And you don’t know the God I serve very well either.

I have ALS.  Yes, right now I can walk and drive and use my hands.  So, I guess just losing my voice is no big deal.  REALLY?  Try having to repeat yourselves several times a day.  Or being treated like an imbecile on the phone when I can’t be understood.  Or being treated rudely because I sound “stupid”.  And if you knew anything about bulbar ALS, did you know I have trouble eating, swallowing, blowing my nose, clearing mucous from my throat, getting breathless while talking, becoming totally exhausted just trying to communicate with the world around me?  Yeah, I’m only losing my voice.  Try not talking for 10 minutes, an hour, a day.  Then tell me that losing your voice is no big deal.

I have ALS.  Every three months I need to go to a clinic to see how much I may be declining.  Real fun.  Having to face the reality that I will probably lose my ability to verbally communicate.  That my family will forget what I sound like one day.  That enjoying a meal with friends may become a thing of the past.  I may start drooling all over myself and need to be fed by a tube.  Yeah, I’m only losing my voice.

I have ALS.  One day, I won’t be able to breathe.  I will gasp for breath and panic.  I’ve seen the look on my father’s face and that terrifies me.  But that’s my reality.  This disease will result in respiratory failure, unless of course I succumb to pneumonia because I aspirated on food, liquid, or saliva.

I have ALS.  Where is your compassion?

As I write this, I am angry.  I know it.  I am wrestling with it.  But I will forgive.  I know I’m on that path right now because my God is in me.  He is calling me to repentance.  He is the salve to all of my wounds.  It’s only when I run from him that I fall prey to anger.  He is faithful and He does not leave me in my sin for long.  I know He is there, because He convicts me, draws me to repentance and forgiveness and restores unto me the joy of my salvation.

I have ALS.  But I have nothing to fear because the God who created the heavens and the earth is in control of even the minute circumstances of my life.  I try not to question the Almighty.  His ways are not my ways.  He is altogether nothing like me.  I am thankful for those truths because His way is always better than mine.

I have ALS.  It doesn’t have me. 

Isaiah 41:10  Fear not, for I am with you;  be not dismayed, for I am your God.  I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.

 

Legacies & Blessings

I must share a brief story with you about leaving a legacy.  Being faced with a terminal illness can affect people in many different ways.  For me, being diagnosed with ALS, has made me really contemplate my life and how to live the rest of it.  Especially after seeing first hand, from my father, how quickly the disease can devastate.  I’ve been thinking about what kind of a legacy I’ve built so far for my children and grandchildren.  To be honest, I have failed quite miserably.  However, although I cannot go back and change my parenting flaws like I wish I could, I realize that it isn’t too late at all to still leave a lasting impression.

I recently read in a Bible journaling group I belong to on Facebook about Journibles.  A journible is a journal and a Bible in one.  I went to the website and read about it.  After seeing the author explain what a journible was and how it could be used to leave a legacy, I instantly knew I wanted to purchase one.  The way it is designed, is you actually handwrite out specific books of the Bible (they sell them separately)  on the right side of the page and on the left side of the page, you leave notes, insights, definitions, etc.  The possibilities are endless.  The author designed the journible after reading in Deuteronomy 17:18 this edict to the king:   “And when he sits on the throne of his kingdom, he shall write for himself in a book a copy of this law, approved by the Levitical Priests”.  He had an aha moment.  If the King was commanded to copy Scripture, why don’t we?  (see video link below for why to use a journible).  What Rob Wynalda (author) discovered is that students who write out the Scriptures have a higher retention rate.  When one writes out the Word of God, it somehow becomes more indelible on the mind.  In the process of writing the Scriptures, he thought about creating a journal, so that people could write out the Scriptures, including their own study notes, as a special legacy to their children and grandchildren.  This seemed like a win, win to me.  As I study a book of the Bible, I could record my insights, while also leaving a handwritten copy of a book of the Bible for my grandson.

I emailed Rob to ask him what type of pen he used, as I contemplated my purchase.  To my surprise, he answered that he used a ball point pen, but if I learned about a more suitable pen, to let him know.  Well, then the Biblical Counseling Conference was soon upon me at NorthCreek Church in Walnut Creek.  They have a very nice bookstore, so I decided to peruse their selection, hoping to find a Journible.  And I did!  I was so excited!  When I got home, I began looking through my pens to see what type I thought would be waterproof and permanent.  If I am going to spend the hours required to hand write one book of the Bible, I wanted to make sure that it would last.  Then I decided to follow up with Rob and tell him of my recent discovery.  I mentioned to him that I was recently diagnosed with ALS and was excited when I heard about his Journible because it gave me the opportunity to leave a written legacy to my grandson.  In addition, I told him what pen I planned to use.  My email to him began a conversation back and forth about how I am doing with my ALS.  This led to me telling him about my current fundraising activities and goals.  He seemed to be genuinely interested in my journey, which was very nice, especially from a stranger, who must be very busy himself.

Today, I received an email notification that someone had given me a donation to my ALS team.  When I checked, lo and behold, it was from Rob himself!  And it was a very generous donation.  My husband and I were instantly flushed with tears of gratitude for such a blessing from a complete stranger.

In summary, my quest for leaving a blessing to future generations resulted in a very special blessing to me today.  I wanted to share it with my friends and family.  When we share our lives with others, they are blessed and so are we.  God is so very good indeed.

I look forward to starting my Journible.  Maybe you should start one too!

http://www.heritagebooks.org/categories/Journibles/