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.

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Hurting People

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Hurting people, hurt people.

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

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

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

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

So that’s what I am going to do.

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

Ungrateful Heart

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

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

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

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

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

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

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

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

10 Things I Want You to Know

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

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

Friendship in Unexpected Places

Me and Kim

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

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

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

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

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

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

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

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

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

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

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

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

Undignified

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

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

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

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

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

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

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

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

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

Freedom

 

 

Can’t I Just Take a Pill for That?

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

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

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

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

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

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

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