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

 

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

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

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

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.