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Finding Freedom

Living Forgiven and Free

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Gratitude

Life or Death

Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.

I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak.  I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit. 

Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.

Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.

People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.

Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled.  Downright shameful.  I didn’t realize the magnitude or consequence until I was one of them. 

To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.

Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference. 

Are you living? I  mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.

I’m Forgiven and Free and living the life given to me

Checking In

Unpublished blog posts sit abandoned in my draft folder. One is bitter;  Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.

Physically
The functional use of my arms is gone. That means I can still use my arms to knock things off the counter, but that’s about it. If we meet for lunch, you’ll have to feed me. Don’t worry about the mess. I’ll have a color coordinated bib, with a convenient Velcro closure,  neatly stowed in my pee bag.

The real bummer is that my progression has reached my mouth and throat. The changes aren’t noticeable unless you live with me. But the signs are unmistakable — excess saliva, choking on air, hoarse, reduced voice volume, muscle spasms in my throat and neck. And when I’m tired, I sound like #45 with dry mouth, “God bless the unitshed shates of amershith.” I have an appointment at the multidisciplinary ALS clinic next week and will meet with the speech the pulmonary therapists. I had been hoping for an effective treatment before I reached this point, but it is not meant to be.

Emotionally 
I’ve been struggling.  My emotional bandwidth isn’t there as I’ve switched from waterproof mascara to no mascara at all. Two local friends with ALS died this week. Tammy was the second woman I’d met with ALS. I was drawn to her gentle spirit, strength, and endless optimism. JT had unmatched charisma and charm, and a wicked sense of humor. Both were deeply loved by family and friends. Coping with my own loss and sadness for Tammy’s and JT’s families is overwhelming.

Spiritually 
I’m at peace with my maker yet miss being part of a faith community. I’ll add this to my New Year to do list.

Return to Gratitude
There’s a time to grieve and a time to live. I do both with profound gratitude and peace in my bones.

What are you grateful for today?

I’m Forgiven and Free and grateful I get to try a recently approved medication that may slow my progression!

radicavapic

Losing My Religion 

I was sprinkled a Methodist, confirmed a First Congregational, dunked an evangelical, and spent years in between with the Presbyterians and non-denominational folks. My life-long Christian tradition provided encouragement, comfort, community and opportunities to serve others. For this, I’m grateful.

I have my own relationship with God and my faith is intact. No worries there.  But I can no longer align myself with the American version of Christianity.  I haven’t been to church since Trump won the electoral college vote last November. I felt like an alien worshipping next to people who promoted Trump as God’s answer for our country.  Fast forward 10 months and the divide is even greater.

I am in no way condemning Christians who chose to remain in the American Christian Faith tradition. Nor, am I condemning pastors and others who have dedicated their lives to Christian service.  There are churches and individual Christians who do not subscribe to these superior, nationalist beliefs.  You do you, keep the faith and keep up the good works. Much good is accomplished.

I will continue to do the same in a community that doesn’t have national evangelical, baptist, and non-denominational leadership (you can google the list) unilaterally supporting a president who the antithesis of the Christ I know and love.

Wrestling with this has caused me to grieve and feel physically ill. I feel ripped-off.  So why am I making this a public declaration? Isn’t religion a private thing? I’ll tell you why:

Trump’s administration and the American Christian leadership’s support of Trump have marginalized people who are dear to me. I want my friends who are transgender, gay, lesbian, disabled, Muslim, female, Mexican, veteran, immigrant (documented or not), Jewish, indigenous, African American, and liberal to know that you matter. I cannot belong to a faith community that believes American, white, straight, male, republican, christians are superior to the rest of the world and come “first.”

I’m not asking you to support my view of Trump and American Evangelical Christian leadership. It’s my assessment just as you have yours. Just know that I can no longer align myself with Americhristianity.

My faith is solid but I’ve lost my religion and faith community.

I’m Still Forgiven and Free

This is Harder Than I Expected

I’ve been on this ALS journey for nearly five years.  That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and medical care I need to live the safest and most engaged life possible.  I also have a caring family and supportive friends that love me–priceless.

I don’t want to complain or sound ungrateful, but holy moly it’s getting hard to make sense of it all.  I don’t recognize my strange looking limbs and I feel betrayed by my body.  I’m still able to talk, eat, and breathe; imagine the betrayal that lies ahead.

My Facebook page is full of grand  kids, travel, ball games, concerts, and friends.  All of it is true.  I refer back to the blessings of my family and friends. What you don’t see is the two hour routine it takes to get me ready in the morning and the one hour routine to get me into bed at night. You don’t see Steve spending 30 minutes trying to make me comfortable or changing my catheter, or helping me in the bathroom. It’s never pretty. Steve is the hero in this story.

You probably haven’t seen me try to scratch my eyebrows.  I drop my head and lift my shaking hand. Then I turn my head from side to side rubbing my eyebrow over my finger.  No big deal really.  It’s just an example of how deliberately I have to consider the simplest of tasks.

I’m no longer driving.  I made the decision to stop before I got into an accident. I’m no longer teaching.  I had to prioritize how I want to spend my limited energy. I simply cannot muster the energy I need to provide the quality of teaching the students deserve.  Truth is I wanted to make the decision proactively rather than have someone tell me I have to quit.  It’s a strategy I employ to give me the illusion I have some control over my life.

The biggest challenge remains between my ears.  I have moments when feel sorry for myself and give up. I struggle with asking for help outside of my family.  I know it’s my stubborn pride. It’s as if asking for help solidifies the fact I’ve lost my physical independence.  Duh.  Thank you Captain Obvious.

It’s a process.  I’m learning it takes me some time to adjust to each loss and that eventually everything will be okay. Take feeding myself for example.  In restaurants I adjusted what I ordered to eat based on what I could get in my pie hole. Chicken tenders and french fries were my only option.  Hold the ranch dressing please.  My social circle shrank because I was too stubborn to have someone feed me in public. Guess what? Steve fed me salad at Jack’s last week and not a single person cared. If anything, people probably thought it was sweet how compassionately Steve cares for me.

So where do I go from here? It’s the same story I’ve been telling myself for the last five years: grieve, accept, adjust and adapt.  Return to gratitude ASAP.  The less I focus on my limitations, the more I can focus on my abilities and who and what really matters.

  • grieve
  • accept
  • adjust
  • adapt
  • return to gratitude
  • repeat

it’s not always a linear process; Grief returns in unexpected ways and yet we persevere. I’ve been stuck in grief for too long so I’m moving on.

I don’t corner the market on struggles or grief. What’s been upsetting you lately? I encourage you to grieve and find a way to persevere.

Lyrics from my favorite artist, Nahko, help me keep my head on straight:

Don’t waste your hate, rather gather and create.  Be of service, be a sensible person. Use your words and don’t be nervous. You can do this, you’ve got purpose. Find your medicine and use it. 

You can do this, you’ve got purpose. Find your medicine and use it.

I’m  forgiven and Free and typed this whole thing without using a finger!  

I’m Not Afraid of Tears

I know it hurts. You don’t have to hide your tears.

ALS is a cruel and difficult disease. You see the visible toll and I know it makes you sad. Uncomfortable even.

I struggle too with each loss of function, especially with the big things like driving and eating. Let’s face it, it’s embarrassing when I eat like a toddler. I know it’s uncomfortable to watch when my hand is shaking and all the food falls back on the plate before the fork hits my mouth. I’ll get to a point where I’m ok with you feeding me. I know you won’t mind a bit.

I know it’s frustrating when you want to invite me places, but I can’t get into your house easily or I can’t get into the venue at all. So the invites stop coming. It hurts.

Your once vibrant, active, and strong friend is slowly wilting away. I get it. It’s ok to be mad. ALS is hard on everyone who crosses its path. It’s ok to be sad. It’s ok to cry in front of me. I’ll probably join you. It helps me know you care deeply.

I mourn not only the loss of physical function. I mourn the loss of cute shoes, my independence, and dreams of an active retirement. It hurts.

I’m an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let’s express and validate our sadness when needed. But let’s not stay there.

I’m still me on the inside. I want to hear all about your life and encourage you to be the amazing person I know you to be. I want to laugh with you until it hurts.

So, I wear ugly shoes, depend on others, and change retirement plans. I can live with that.  

I love you my friend, and I am loved. That’s really all that matters.

I’m forgiven and Free and it’s ok if you cry with me.

 

Inspiration

The act of breathing in.

The process of being mentally stimulated to do or feel something, especially to do something creative. 

The supernatural work of the Holy Spirit.

I received a pleasant surprise in the mail today.  This picture of my precious grand daughter giving me a kiss was on the cover of a pharmaceutical company’s annual report. A similar picture hangs in the company’s board room along with pictures of several other patients. The CEO wants to remind board members that serving patients is their inspiration.

I heard today that inspiration is closely tied to creativity and ultimately connected to hope. Oh Lord, I need hope. I have down days in which hope eludes me. I have thoughts of life with ALS being too hard.  It’s a cruel disease. All thoughts of life-extending interventions are off the table. Just hunker down, this will be over soon.

Ok. I can’t stay there. It serves no one.

Hope is what moves me from despair to gratitude. I think about what inspires me to keep living:

  • The love of God, my family, and friends
  • Serving and encouraging others in creative ways
  • Being present and finding gratitude in the moment

What’s your inspiration? Leave a comment so we can learn from you.

I’m Forgiven and Free and inspired by you!

.

 

 

Live Long and Prosper 

My latest ALS progression has me looking like Dr. Spock.  I noticed that I can’t close the gap between my middle and ring fingers — Live Long and Prosper!

This got me thinking about what it means to live long and prosper. What does that look like?

In the Broadway Musical Hamilton, George Washington tells an eager young Hamilton, “Dying is easy, young man. Living is harder.” When I see people living in the advanced stages of ALS, I would have to agree with General Washington. Living is harder.

Yet, my plan is to live — live long and prosper. But how when faced with debilitating loss? This has been working for me so far:

  • grieve the loss
  • adjust with technology or assistance
  • grieve the loss
  • adapt to the new normal
  • return to gratitude
  • repeat

What loss or disappointment are you facing today? I won’t tell you to get over it. It’s not that easy. I will encourage you to grieve, adjust, grieve, and adapt. Whatever that looks like for you. 

Oh, and don’t forget to laugh! Here’s a picture of my new foot tattoo.

outoforder

I’m Forgiven and Free, living long, and prospering

Roll with Grace

Death is a constant in the ALS community. Yet this one hit me particularly hard. My dear friend and adopted sister won her battle with ALS on Wednesday, January 18th.

I met Karen and her amazing family in May, 2014 at the National ALS Advocacy Days in Washington DC.  Instantly, she was my sister from a different mister. She was a few years ahead of me in her ALS progression, yet I knew I wanted to roll with this disease just as she did, with grace and dignity.

karen-4

Our disease progressions were nearly identical and we would talk and text share the joys of sisterhood and our grief with each new loss. We also shared how thankful we were for our loving husbands who sacrifice so much to take care of us.

karen-5

I was compelled to emulate her infectious smile and positive attitude. She advocated relentlessly to make life better for people living with ALS.

karen-2

We looked forward to seeing each other in every year in DC. We even had a surprise meeting at an institute in Florida. Like a true friendship, we would pick up where we left off without missing a beat.

karen-1

The scientific community is so close to an effective treatment for the SOD1 familial form of ALS that Karen had. I’m angry that she didn’t have access to the experimental drug. Yet, Karen would tell me to not be angry, it’s just the way it is.  So to honor her I won’t stay in anger. I’ll focus my energy to gratitude for knowing such an amazing women.

I learned so much from Karen.  She set the tone and direction for how I roll in my life with ALS — with grace and dignity.

Here’s an excerpt from Karen’s final message:

The day has finally come, I am free from this body that has trapped me. Please don’t be sad, celebrate the life that I had before ALS took over. I put up a good fight and in my mind I have won my fight against ALS. Yes, this sucks and I will miss so many great things, but I have had a life filled with love and happiness. ALS could never take away the fact that I have spent many joyous days with the most amazing family and friends. Thank you for making my life such an awesome ride! … To my family and friends, thank you for making my life so incredibly awesome. Never forget how fragile life is and that every day matters!

I’m Forgiven and thankful that Karen is Free

Balance: Mind, Body & Spirit

I practice in my Christian tradition that:

  • my mind is to be fixed on praiseworthy things
    Finally, my brothers and sisters, always think about what is true. Think about what is noble, right and pure. Think about what is lovely and worthy of respect. If anything is excellent or worthy of praise, think about those kind of things. – Philippians 4:8

  • my body is a temple of the Holy Spirit
    Don’t you know that your bodies are temples of the Holy Spirit? – 1 Corinthians 6:19
  • the Spirit of God dwells within me
    The Spirit is in you, and you have received the Spirit from God. – 1 Corinthians 6:19

I find these teachings helpful and true for me. Holding these Bible verses in my heart brings me peace and purpose. Yet, as my ALS progression renders more of my body useless, I’m perplexed as to how my failing body is worthy to be a temple of God.

I view my mind, body, and spirit as separate entities and struggle to keep balance because I’m not able to tap into my mind and spirit to bolster my failing body.

Something was missing in my understanding. I was missing the inseparable and interdependent relationship of the three. Coincidently (well maybe it’s not a coincidence), I’ve been studying the Eastern Cherokee people of North Carolina for a work of fiction. The Cherokee people believe that one must strive to maintain social and spiritual harmony and balance. Internal harmony and balance allows individuals to be at peace with their bodies, their thoughts, their emotions.

Looking at my life through the Cherokee lens was the subtle shift I needed to bring my mind, body, and spirit back into balance. Can I find balance amongst my mind, body, and spirit with my body being a hot mess of dying motor neurons? I think, yes.

There are eleven major systems in the human body. Just one of mine, the nervous system, is failing and ten other systems are going strong. I can focus my thoughts on all the systems in my body that are doing well and speak health into my body by integrating my mind and body.

My spirit? The Holy Spirit dwelling in me? I’ve got some work to do here.

I’m Forgiven and Free and working on integrating the three.

 

 

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