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Living Forgiven and Free

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The Little Things 


It felt like God gave me a gentle kiss on the forehead.

This morning I was waiting for the ALS Advocacy conference to begin and in walked Chrissie, my sister from another mister. We embraced for a moment longer than last year as we silently acknowledged that Karen wasn’t with us

Then Chrissie exclaims, “I have something for you!” and hands me a tiny pillow. “This was Karen’s and I want you to have it.” 


Karen found comfort by resting her motionless hands on this soft pillow that Chrissie made for her. I took one look at the pillow and knew God  was in this. 


The anchor on the pillow is identical to the anchor on my recent foot tattoo. Coincidence? I don’t think so. 

I knew seeing my Delaney sisters for the first time since Karen’s passing was going to bring a host of emotions. What I wasn’t expecting was God showing up in something so little, yet so huge. 

God shows up in the little things to bring us comfort and peace. Be on the look out for the big gifts that Show up in small packages. 

I’m Forgiven and Free and thanking God for the little things

Preparing for Life without Hands

Legs are relatively easy to replace with equipment and ramps. I use a power chair, shower chair, patient lift, lateral rotation bed, and a van with a ramp and hand controls.  Once I’m showered, dressed and lifted into Ruby Tuesday (my power chair) I have a semblance of independence.  I can drive short distances, go to the store, go for a roll, or meet a friend for lunch.  This is relatively doable and has been my life for more than three years.

Life without working arms and hands is going to be a bit more complicated. My ALS progression has remained relatively slow. Yet, I’ve reached a point where I’m losing important function in my arms and hands.

Imagine an elastic band wrapped around your chest holding your arms at your sides.  Now try to move your elbows away from your body.  At the same time, a strong person is pushing down on your shoulders. Now pretend you’re eating a bowl of cereal and the same strong person is pushing your hand down while you are trying to reach your mouth. This is what it feels like to move my arms and hands.  So simple tasks like putting a jacket on and off or brushing my hair are difficult, if not impossible, and physically exhausting. I’ve limited my driving to only a few miles during the day.  I haven’t had any close calls while driving but I’m being proactive and not taking a chance of having an accident caused by fatigue.

I watch my 2 year old grandson gradually master the use of his hands.  As an infant he would try to grasp a toy or reflexively grab my finger.  Then he could pick up a Cheerio and find his mouth.  Now he can manipulate puzzle pieces and draw circles with a crayon. As my hands atrophy and lose function, we are traveling the same path in opposite directions.  We will meet soon on the continuum.

Tasks requiring fine motor skills are eluding me. I can’t open a shampoo bottle or squeeze a tube of toothpaste.  Eating in public is quite embarrassing as I eat like a toddler hoping the finger food makes it into my mouth on the first attempt. Last night I tried to put a handful of vitamins and meds into my mouth, like I do every night, and completely missed.  Not one pill made it to my mouth. So I tried again successfully with a two-handed approach.

Like the equipment that replaces my legs, I have some new technology that will replace my hands.  Meet Tobii.

tobii

Tobii is a speech generating device that can be controlled with my eyes. The bar below the screen has a camera that follows the reflection of light from my retinas.  So my eyes move the cursor like a mouse. I can navigate in the apps provided, make a phone call, use any Microsoft program, or access the world wide web.  Pretty amazing.

Tobii joined the family a few weeks ago.  There’s quite a learning curve to achieve proficiency and I want to make that happen before I’m completely dependent upon it.  For now I can still type with my shaking fingers, but my days of typing over 100 wpm are long gone. So I practice typing with my eyes in the evening when my hands need to rest.

Meet Obi.

obi

I met Obi the robotic feeding arm last week.  We practiced by eating Cheerios and it was love at first bite. My occupational therapist is helping me make Obi a permanent part of the family. She is also working on a voice-activated control for my bed so I can operate the 13 functions without using the remote. I’m forever grateful to the VA healthcare system that generously provides all my technology and equipment. Thanks to the VA, I am able to live the healthiest, safest, most engaged and independent life possible.  Many people with ALS rely on medicare and do not have access to this life-giving technology.

The past few months have been emotionally difficult as I process the grief of my diminishing independence. Spontaneous tears. Racing thoughts bounce in my head:

  • I don’t want to live anymore
  • I can do this with the love and support of my husband, family, and friends
  • I want to quit everything and hide
  • I can stay engaged in teaching and writing
  • I’m a burden to my husband and children
  • How will I cope with total paralysis?

Then I noticed that my thoughts are all about me and this self-focus is not emotionally healthy.  It’s time to return to gratitude, be present, and engage at whatever level I can at the moment.

I’m Forgiven and Free and grateful for my family and technology

 

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.

 

 

Resolutions with a Twist

Oh, there is much I want to do in 2017.

Find a cure for ALS.
Advocate for social justice.
Travel to Europe.
Walk.
Write a book.

There is much to do, but I’m not resolving to DO anything.

My new year resolutions are about the person I want to BE.

I resolve to be:
Loving
Joyful
Peaceful
Patient
Kind
Gentle
Faithful
Grateful

I figure if I focus on the person I want to BE, rather than what I want to DO, what I do accomplish in the coming year will be exactly what needs to be done.

Truth is, I’m often scared about what the future will bring while living with ALS. What function am I going to lose this month? Is this the year my physical function goes completely to hell? Will life be worth living? What if, what if? I’ve not found it productive to dwell on such things.

What I do know about the coming year is regardless of what ALS does to my body, I will continue to be loved and supported by family and friends. I will spend my energy being grateful and searching for silver linings.

I’m Forgiven and Free and focusing on the person I want to BE

My Shrinking World

Some is my own doing; some is a consequence of declining mobility and function. But no doubt, my world is shrinking. My constant go, go, go has been reduced to a single go and rest the remainder of the day. Friendships have diminished; some have extinguished.

Much of my time is consumed with medical appointments, researching and trying out the technology that is slowly replacing my own functionality. This week it’s a bed that rotates my entire body from left to right. Ahhh. I’m so excited at the thought of being able to move again in bed! An able-bodied person moves every 11 minutes during sleep. I move a total of zero times if unaided by a rotating bed or tired husband.

Eye-gaze and speech to text technology will soon replace my failing hands. It’s a good news bad news thing. The bad news is my hands are failing, the good news is there is technology available to replace clicking and typing with my hands. Thanks VA Healthcare for providing all the technology I need without putting up much of a fight.

ALS can be physically isolating. I miss full-on hugs. They’ve been replaced by awkward side arm hugs from my power chair. I miss easily visiting a friend’s house. Steps and door thresholds are not friendly to me. Sure ramps can typically get me in the door, but then there are those pesky rugs and tight corners. I would hate to take a chunk out of your drywall.

ALS can be socially isolating as well. Eating is now a difficult and messy proposition and many social interactions revolve around food and drink. I’m sure I’ll get used to the stares and mess. But for now it’s still embarrassing.  I’m transitioning from a social butterfly extrovert to a peaceful introvert. I’m growing more comfortable with extended periods alone with my thoughts. This isn’t necessarily a bad thing. It is what it is.

Is my shrinking world a function of age? Disability? Wisdom? Isolation? Self-pity? I’m not sure. Oh wow. This is sounding like a pity party that needs to end. Let’s focus on gratitude. I’ve got a lot to look forward to and even more for which to be thankful.

I hope to be participating in the next arm of the GDC-0134 phase I clinical trial slated for January. If all goes as planned, I will be taking the new drug every day for two months. Hope is exciting stuff.

I’m Forgiven and Free

Right to Die

I don’t want to die. If fact, I’m fighting to live!

The End of Life Option Act just became law in California. A patient with six months to live has the option the obtain life-ending medication. Here’s the problem — the medications have to be self administered. By the time most ALS patients have six months to live they are completely paralyzed and do not have access to the End of Life Option. Many are also unable to communicate and can’t make the two verbal requests and one written request required by the law.

I was interviewed by our local CBS news affiliate last week and shared how people with ALS and other physically debilitating diseases won’t be able to access the law. Regardless of how you feel about it, it is the law and everyone should have access to it regardless of a disability.

Looks like we have some advocacy work to do. Speaking of accessibility and advocacy, why do all forms of public transportation have wheelchair accessibility except airplanes? Anyone know how to make that happen? Do I have to sue the airlines?

I’m Forgiven and Free and looking for accessibility

P.S. Here’s a link to the video: CBS Local News Segment

A Dad’s Wisdom 


During an interview for the SIU Alumni Magazine I was asked, “At what point did you accept the fact that you had ALS?” Accept it? I didn’t know how to answer. 

Later my Dad (the Doctor of Philosophy) explained to the reporter that one doesn’t really accept something tragic. Rather, one learns to cope either positively or negatively. Lightbulb! 

I think of friends who have lost a child or spouse. Acceptance may never happen. You can choose to continually work through the grief and cope in a way that allows life to continue. Ask my friend Donna who lost her son in a car accident; In spite of unimaginable grief, she honors Justin’s memory while counting to live her life to the fullest. 

I’m actually quite sick of ALS. Living with it. Talking about it. Writing about it. Advocating for it. 

I’m have no choice but to live with it until we find an effective treatment or cure. I could stop talking, writing, and advocating. But that is one of my positive coping strategies. I feel as though I’ve been so blessed in this journey, that I have a responsibility to be a voice for those who have lost theirs. 


What are you facing that is difficult to accept? Change your focus from acceptance to coping in a positive manner. There is alway always always something to be grateful for. 

I’m Forgiven and Free and coping the best I can 

White Flags 


Steve and I are on day two of a month long road trip. We were cruising through the Utah salt flats this morning and a Chris Tomlin song made my eyes leak. White Flag. 
“We raise our flag, we surrender, all to you, all for you. We raise our white flag. The war is over. Love has come. Love has won.”

I wasn’t sad about surrendering to Christ. That happened decades ago. (Although, I do have to remember to surrender my fear at times).  The tears came because White Flag was the last song on my 3-mile running playlist. When this song played on my iPod I knew my morning run was coming to an end. I miss the feeling of endorphins and a strong healthy body. 

This morning my left bicept was shaking under the strain of lifting a coffee cup. The tears roll. It’s happening again as I hold my phone to type this. $@-t. Gah. Pissed. 

There will be no white flags surrendering to ALS. Surrounded by the love and support of my family and friends, we press on in gratitude and hope. 

Love has won. But the war on ALS is not over. May is ALS awareness month and today Scott began his 2,663 mile trek on the Pacific Crest Trail. Follow his journey on gnarlyriver.com. He’s hiking for ALS awareness, money for research and what I find most endearing, he’s hiking for those of us who can’t. 

Would you consider sponsoring Scott on his journey? Ten cents a mile is an easy $26 donation to The ALS Therapy Development Institute.

Share our video in your social media circles and sponsor Scott here. Thanks for your support!

I’m Forgiven and Free and as Team Gleason says: 

A Hashtag is Worth a Thousand Words

#ShellysPCT

Scott will begin his journey of a lifetime in just a few short weeks. Beginning May 1st is going to hike 2,663 miles on the Pacific Crest Trail. He is hiking for those of us who can’t, raising awareness and support for ALS research along the way.

Scott will be posting pictures and blogging about his journey using the hashtag #ShellysPCT. You can also follow Scott’s live GPS signal on his blog at gnarlyriver.com.

This is exciting stuff! Please share the video and hashtag so we can all support Scott as he hikes 20+ miles a day for over five months. Scott knows this hike is about so much more than himself. He wants to share his journey with those of us who can’t even take a single step.

Watch the video and donate today!

 

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