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Finding Freedom

Living Forgiven and Free

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Freedom

Living Your Best Life

My life isn’t what I expected. Who would have thought my arms and legs would be merely ornamental? I’m not going to lie, being a quadriplegic isn’t easy. Wow. I need a minute to let that sink in, my arms and legs are no longer functional. It’s not the end of the world. I can still live my best life, regardless.

You can read here how I mourned the loss of being the cookie making grandma I thought I’d be — but I’m done mourning.  With the support of my family and friends, I’ve adapted to a new normal. Check out the picture, I’m playing with my 3½ month old grandson. I’m not able to hold him so Grandpa put baby’s bouncer over my legs. Voila! Twenty minutes of nursery rhythms and giggles. Pure joy.

What does living my best life look like?

  • I write a work of fiction celebrating the power of sisterhood.
  • I participate and advocate whenever I can to find an effective treatment or cure. 
  • I celebrate that I’m at year six with a two to five year prognosis.
  • I surrender to the fact that I need help with everything except breathing and talking. ALS hasn’t taken those yet. But if it does, I’ll adapt to that too.
  • I process frustration and grief when they come, then I punch them in the face.
  • I surround myself with positive people, my tribe.  
  • I practice mindful meditation to stay present and grateful in this beautiful gift of life.  
  • I remember God has a divine purpose for my life — that is to encourage and pour love and acceptance into every person I meet. I’m not there yet, I’m a work in progress.

Are you going through the motions of this life, waiting for your best life to begin when _______? Fill in the blank. Stop waiting. Start now. What does living your best life look like? Don’t compare yourself to others. Don’t listen to what society says. Live YOUR best life. Drop the excuses. Find your tribe who will support you and get busy living your best life, regardless of circumstance.

What does  living your best life look like? Comment so I can learn from you.

I’m forgiven and free and living my best life, regardless.

 

Powerful Medicine

I believe in the good things coming — Nahko

The music of Nahko and Medicine for the People has profoundly influenced my journey. I adopted their chorus, I believe in the good things coming, as a motto to sustain me during my difficult days living with ALS. Nahko sings of peace and finding joy and gratitude, a message that is medicine for my soul.

I had the most amazing experience at a concert a few days ago. Nahko came out into the audience and I found him standing next to me. He held my hand and sang my favorite song, Love Letters to God. My heart nearly exploded. I felt his energy pour into me as he sang, I’ve never experienced anything like it. I was overwhelmed with a feeling of abundance and joy that could not be contained.  My heart expanded and I am compelled to be a conduit for the love and acceptance shown to me. Truly, he gave me his medicine.

Speaking of medicine, I was fortunate to start in a phase I, open label extension of an experimental drug trial. That means I get to take a new drug everyday for 11 months, with no placebo. I’m super hopeful that this novel molecule could stop my progression. I’ve lost the use of my arms and legs, but I can still talk, breathe, and eat — three things I’d like to hold onto.

So friends, what do we make of this? Two things: Medicine and healing can come in different forms and we can let peace, love, and joy flow through us in abundance. There is no shortage of these.

I’m Forgiven and Free and living life abundantly

Brain Damage to Gratitude

I’ve recently turned the scariest corner of my ALS journey — bulbar symptoms. I’ve lived in denial for five years, thinking I would never get there. But, here I am, experiencing loss of pulmonary function, choking, excess saliva, and slow speech. It’s devastating. Those who know me, know I have a LOT to say. The thought of losing my voice is terrifying. The thought of not being able to breathe on my own is harrowing.  

By the numbers, my Forced Vital Capacity (FVC) is 75% of normal. That’s still a manageable number, but it’s when symptoms begin to appear. You’ll have a hard time hearing me in a noisy restaurant and I’ll get exhausted trying to be heard. Being proactive against this beast, my physician ordered a trilogy ventilator. I will spend some time getting used to the bi-pap function that will give my diaphragm a rest at night and provide symptom relief during the day. This is typical progression and treatment. It’s not the end of the world, but it’s the beginning of my respiratory issues.

I quit taking my big vitamins after a few choking scares. But, my waistline will attest that I don’t have any trouble eating yet. You can see that my grandkids can still feed me breakfast in bed. Archer says, “A bite for Gramma, and a bite for me!”

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My voice is beginning to slow as I sometimes have to deliberately move my tongue when talking. It’s quite noticeable after a glass of wine. My speech pathologist predicts that my voice has about a year left. We’ll see how it goes.

I did have one surprise — Pseudobulbar Affect (PBA). It’s a treatable, secondary neurological condition that presents as uncontrollable, exaggerated, or inappropriate laughing or crying. People with Parkinson’s or ALS or people who have suffered a stroke or traumatic brain injury may develop PBA. I’d been crying much more than usual and thought I was experiencing typical depression symptoms. I decided to talk to my doctor about it after one particular episode.

Steve and I were at a restaurant called the Lazy Dog. I pointed out to Steve that the beer tap behind the bar was a red fire hydrant. How cute is that? I thought it was so cute, I started bawling. I wasn’t eager to admit I had brain damage, but I knew then it was PBA. I talked to my doctor and asked to try Neudexta, the medication to treat PBA, and to meet with a therapist to learn some new coping strategies. I’m happy to report that the medication managed all of my PBA symptoms within a week and the therapist is teaching me mindful meditation techniques to add to my toolbox.

I share all of this with you as part of my grief processing. By the time I am able to write about it, I’ve grieved, adapted, and accepted the situation as my new normal. I also write in hopes that you learn with me and ultimately live in gratitude, regardless of circumstance.

I’m Forgiven and Free and grateful you all are on this journey with me.

The Surreal Gift

My bed gently rolls me from my side to my back. The familiar hum of the bed rouses me. You know that place, you’re half awake and half asleep? I open one eye, just a sliver, to see if the sun is up. Yes! Time to get up. In my mind, I sit up and swing my legs off the bed. “Steve, you won’t believe the dream I had. I was paralyzed and completely dependent on you for everything. It was crazy!”

My attempt to sit up met with resistance. I’m reminded of the reality, this is not a dream. I feel perfectly fine, not sick, like a dying person is supposed to feel. Yet, I can’t move because ALS is killing off my motor neurons. Surreal.

The Gift

Psalm 46:10 says, “Be still and know that I am God.” I read that and think, be present, let go of results, don’t worry about what tomorrow will bring. Then, I remember Matthew 26, “Do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?” Each faith tradition speaks to being present and at peace. That’s the gift. Let’s practice gratitude and peace, regardless of circumstance.

What’s stopping you? Root it out, let it go. No buts, be still.

I’m Forgiven and Free and still 😉

Top Ten List

I’m not dying anymore. I’ve outlived my 2 to 5 year ALS prognosis and I’m done being sick. I’ll continue to advocate and irritate until we have an effective treatment, but until then, I’m choosing to LIVE without death hanging over my head. I know a band of heroes and sheroes who are showing me how it’s done.

You’ve read my laments; I anticipate mourning losses to come. My life is different than I expected, but it is what it is. I once said in an interview, “There aren’t many people I’d trade places with in this life. I’ve got it pretty good.”

Here’s the top ten list of the upsides of my less physical, more cerebral life. In other words, the benefits of holding still:

10 — Plenty of quiet time
9 — Rarely need an alarm clock
8 — No housework
7 — Preferred parking
6 — No expensive gym membership
5 — Manicure stays perfect
4 — Feet stay callous free
3 — Only need to tan my front side
2 — I’ll never need a knee or hip replacement
1 — Did I mention no housework?

There’s always a bright side. I have my top ten list, the most supportive family and friends, and my faith.

What’s on your top ten list?

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!  

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.

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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.

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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.

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

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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.

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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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