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Finding Freedom

Living Forgiven and Free

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!  

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

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.

 

Right to Try: A Call to Arms

People I respect have told me Right to Try is feel-good, unnecessary, and toothless legislation. What I hear is them telling me no, again.

Right to Try is a call to arms for ALS patients to demand access to potentially life-saving treatments that exist today.  There are possible treatments sitting in the pipeline with years to go before they receive FDA approval.  Tens of thousands of people have died waiting for an effective treatment. Most of us living with ALS today will die before these drugs get to market.

That is not OK with me or my friends and family who love me.

Even before Right to Try legislation (which removes the FDA paperwork requirement) passed in 33 states, qualifying patients and doctors could petition the FDA to get access to treatments in the pipeline under the Compassionate Use or Expanded Access Program. The lengthy paperwork processed has been trimmed and the FDA approves most of the requests. So what’s the problem?

Drug companies are in the business of making money by selling drugs, and they can’t sell a drug until it gets FDA approval. It takes 7-10 years and 2.5 billion dollars to get a drug approved. There are no incentives for drug companies to provide unapproved drugs to patients under Expanded Access or Right to Try. They only face risk, liability, and perceived interference with clinical trials.

So there you go. Thousands of people die because the drug companies can’t tolerate any more risk or liability.  Can the FDA alleviate the risk and liability? Yes. Will they? Not yet.

I say not yet, because I believe it can happen. 

I was interviewed for a recent Sacramento Bee Article.  The reporter did a fair job presenting all sides of the argument. My favorite quote is, “There’s a lot in the pipeline; we have nothing that works, and we’re dying quickly,” Hoover said. “I’m extremely persistent, and I will keep asking until I get a yes. My alternative is to do nothing and die. It’s worth a fight for me to do it.”

I have a real problem with the quotes from Don Nielsen, director of government relations for the California Nurses Association. He said he’s concerned that patients will become “guinea pigs for the pharmaceutical industry.”  I’m already a guinea pig for the pharmaceutical industry. So that’s not an issue.

He went on to say, “The reason no one in the process wants the liability is because (the drugs) haven’t yet been tested.”  Wrong. A drug has to pass Phase 1 safety and tolerability  trials before being eligible for Expanded Access or Right to Try.

Neilson continued, “It’s potentially a very unsafe situation for a patient. They’re being exploited by drug companies that could make a lot of money off the individual and not be held accountable.” I would love to have a sit down with Mr. Nielsen and explain to him that I have already taken a greater risk by participating in the Phase 1 trial — it was the first time the drug was tried in humans.  Also, drug companies can’t charge a patient more than it costs to manufacture. How much I spend on a drug and the risk I am willing to tolerate is not his concern. Here’s your nose back Mr. Nielsen, I found it in my business.

The ALS community is perfectly positioned to put Right to Try to the test and persist until we get a yes. The patient criteria is like an ALS biography:

  • Terminal diagnosis
  • Exhausted all available treatments
  • Ineligible for ongoing phase 2 and 3 efficacy trials

Check, check, and check. ALS is 100% fatal. We have no treatment, and we are not eligible to participate in phase 2 or 3 clinical trials 24-36 months after symptom onset.

We need to come together and demand access to potentially life-saving treatments. The time is now.

Tricket me beth

Pictured with me are two other women with ALS. We were in Washington DC in 2014 asking legislators for research dollars. Beth on the right is still in the thick of the fight. Sadly, Trickett in the red jacked died before an effective treatment was found.  Carrying her name, the Trickett Wendler Right to Try Act of 2017 will provide federal protection for states that have approved Right to Try laws.  Here’s a link to the recently passed California legislation AB-1668 if you would like to read more about it.

Quite frankly, I’m pissed. The solution is simple, even the FDA says it’s possible.  Yet most of the medical community and pharmaceutical industry are against it.

They are literally protecting me to death.

I spoke at a conference a few weeks ago about designing patient-centric clinical trials. Of course, I brought up Right to Try to the audience of pharmaceutical employees. One astute participant asked me, “What do you think needs to happen next?” I replied that the FDA needs to remove the risk from drug manufacturers and put into writing that compassionate use will not jeopardize their clinical trials. And secondly, and more importantly, the ALS patient community needs to get loud and demand access.

Remember in the early 80s when people were dying from AIDS? Treatments existed and patients didn’t have access. Angry, dying people acted up and persisted until patients got access to life-saving drugs. Now AIDS is a treatable, chronic condition. They didn’t passively wait decades for the FDA, medical professionals, and drug companies to work it out.

We can’t wait any longer either if we want to live.

Where does compassion intersect industry responsibility? I say here and now.  I will not take no for an answer and neither should you. Ask your neurologist for access to drugs in phases two and three. If he or she says no, find a neurologist who will support you.  If your state hasn’t passed Right to Try legislation, ask under the Expanded Access program.

My ALS friends, we must unequivocally and unilaterally persist.  We cannot stop when we hear a no. Go around it. Start a social media shit storm. Do whatever it takes. We have to because our lives depend upon it.

I’m Forgiven and Free, extremely persistent and will be putting Right to Try to the test

p.s.
Please share this post and add your wisdom as to how we can make this happen. Imagine  if several hundred or several thousand of us showed up in our power chairs! I just had a vision of us being arrested and the officers having to use Hoyer lifts to get us into the police cars. That would be fun. Let’s do this.

 

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

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

 

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

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