Finding Freedom

Living Forgiven and Free

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 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.


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.


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.


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


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.


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.



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.
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:

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

Unmet Expectations


Much of my emotional suffering is a result of unmet expectations. 

The visible suffering of ALS is obvious in loss of ability to control my body. Sure it’s frustrating for me and everyone who loves me. So we slow down, add equipment, change routines, adapt and adjust.

We all have expectations, beliefs that something is likely to happen.

Get out of bed.
Walk to the kitchen.
Pour a cup of coffee.

Most able-bodied people wake every morning knowing these things will happen. It’s expected. Even though I can visualize myself doing these simple tasks, I have no expectation that they are going to happen without assistance. Acceptance lessens suffering.

Having unreasonable expectations is a great source of suffering.

The key to limiting suffering? Reframe expectations of myself and others. Let me explain. I suffered a great deal the past six months because of what was happening politically in the U.S. I was physically and emotionally sick. I quit writing, I changed political parties, I quit my Bible study, I unfollowed friends on FaceBook and was unfollowed and unfriended by a great deal more. I spiraled. I was horrified at the thought of a greedy, narcissistic, degrading, mocking, lying bully being elected President and didn’t want to be around anyone or any organization who did. I expected others to view the election as I did, to see what I saw, and to value what I valued. Didn’t happen. My expectations, what I believed was likely to happen, didn’t happen. I suffered for it. Bigly.

I was wrong for placing my expectations on others.

I’ve thought through the angst I caused myself and have reframed my expectations. Am I happy and accepting of the election results? Unequivocally no. But I have removed the unreasonable expectation that others view the world as I do. I’m channeling my energy to promote issues of social justice and compassion. A much better choice than suffering.

Here’s another example: I expect my family and friends to read my mind, to know what I’m thinking, and to know what I need from them. Nonsensical. When I find myself suffering because of what someone else is doing or not doing, I have to stop and ask: Do I have a reasonable expectation? Have I communicated my need? If the answer is no, I am causing my own suffering.

Does this practice eliminate all of my emotional pain? No. The feelings are real and I have to find a way to process them. However, I do have a sense of controlling how long and to what depth I experience the pain. I’m able to roll away from it when I’m done.

What can we reasonably expect from others?

I’m not suggesting we all walk away from relationships and disengage from society. But I am suggesting that we carefully examine the judgement and expectations we place on others. What can I reasonably expect? I expect to be treated with care and respect and will reciprocate in kind. However, I have no expectation that you will be able to read my mind or think or act the way I expect you too. If someone doesn’t treat me with care and respect, I can choose to not be in relationship with him or her. If that’s not an option, I can emotionally disengage. 

Are you the cause of your own suffering?

What are you expecting from people or society that is causing you to suffer? We have no right to expect justice or deference. Really, we don’t. So take a step towards eliminating your own suffering and finding freedom by reframing your expectations.

I’m Forgiven and Free and reframing my expectations.


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

Ode to Opposable Thumbs

You separated me from most of the animal kingdom, my opposable thumbs.

Open a shampoo bottle
Pick up a fork
Pull up the covers

Turn the page
Text a friend
Mute the TV

You are slipping away from me.

Squeeze the toothpaste
Put in earbuds
Unlock the car

So clumsy. Atrophy is winning.

Shuffle the cards
Twist a Q-Tip
Write a note


Oh wonderful opposable thumbs, how I miss you.

Hey White Friends — Here’s Our Chance 


Are you tired of being called a racist, homophobic, xenophobic bigot? Now’s our chance to do something about it. We implore leaders in the Muslim community to denounce the terrorist actions of extremists. We demand that leaders in the African American community denounce gang violence or violence against police officers. So what does our silence say when half the country thinks this represents the Trump Presidency? We must denounce this hateful rhetoric. Our silence makes us complicit.


Three years ago the ALS Ice Bucket Challenge validated me. Millions of people dumped ice water over their heads and many donated money. IBC videos saturated social media. I felt people were saying directly to me, “I see you. I hear you. I recognize you have experienced struggles as a person with ALS that I don’t as an able-bodied person.” Seems such a simple gesture, yet it was liberating and empowering to me.

We now have the chance to validate and empower communities who are feeling marginalized by the rhetoric of the recent election and actions of the very few racists people who feel they have been given permission to express their hate.

What an opportunity we have. Imagine the message we will send when liberals and conservatives stand together and say, “We want liberty and justice for ALL Americans.” It’s a simple gesture that could possibly validate the experience of Americans who are feeling left out of the conversation.

I can hear the arguments now. I’m not a racist. It’s not my responsibility. The law says we are equal. I haven’t done anything to them. Not my problem. What if we look at it from another perspective? What if we recognize that forms of white, male, abled-bodied, Christian, heterosexual privilege exists? Wait! Don’t stop reading now. Please give me another few minutes.

Our current silence speaks volumes and I’ve been part of the problem. I’ve been railing against my white friends who don’t get it. Those who refuse to acknowledge that the experience of others is America is not the same as their own. Most of us have not been oppressed by the dominant culture, so how would we know what it’s like?

I didn’t get it until I was 47. I spent three years working closely with a cohort of educators that included people who were white, black, Latino, Native American, and other races. We were Muslims, Christians, agnostics, atheists, and Wiccan.We were women and men, straight, gay, and lesbian. We were first generation Americans, Americans who families came on the May Flower and slave ships, families who were indigenous to America and everything in between.

I was changed by this loving group of people. They shared their lives and stories with me and I realized how privileged I’ve been. Does that make me wrong or bad? No. Should I feel guilty? Absolutely not. Can I recognize that my experience of living in America has been different than many of them? Absolutely, yes. This doesn’t mean they have had miserable lives or lack opportunities. It simply means that they have encountered different struggles or challenges that I do not face being a white person.

This brings me back to how I felt after the ALS Ice Bucket Challenge phenomenon. Should people without physical disabilities feel badly or defensive because they are able-bodied? No. That’s a ridiculous thought. Can people without physical disabilities acknowledge that I encounter difficulties or obstacles that they do not? Absolutely. Something as simple as the Ice Bucket Challenge validated this for me.

It’s undeniable that groups of Americans feel marginalized and left out of the conversation. Well, I guess you can deny it, that’s a white privilege. But the fact remains that many Americans feel this way. So how should we respond? We can name call and tell them to accept the voice of the electoral college and get over it. My guess is, if you are still with me, you don’t like that option.

Our continued silence is not a option.

The time is now to send a loud and clear message to our fellow Americans that we see them; we hear them. We acknowledge that their experience of living here is different than our own. We have the responsibility to take the first step.

Don’t know what to do about it? I didn’t either. So I researched how to be a white ally. I paid particular attention of authors of different races than me. I learned not tell others what to do, what to feel, or how they should fix it. I learned the most productive things I can do is talk to my friends and family about white privilege and join groups that follow the lead of activism led by people of color or other marginalized groups. Here’s my first two steps: 1) I joined the Sacramento Chapter of Showing Up for Racial Justice, and 2) I’m marching on the California State Capital on January 21st to support the rights of women. Americans from all over the country will march in Washington DC.

Too radical for you? Start a group called “White guys who want liberty and justice for ALL Americans.” It’s up to you how you show up. But we must act now.



A Guinea Pig’s Room with a View

The Golden Gate Bridge is to the left and Alcatraz is to the right. Oh, the stories they could tell. This is my view of San Francisco for the next four days as I participate in a Phase 1 (first time in humans) drug trial.

Genentech has been working on the drug GDC-0134 in the lab for over a decade and it looks promising.  The study is titled: “A Single-Ascending-Dose Study of GDC-0134 to Determine Initial Safety, Tolerability, and Pharmacokinetic Parameters in Patients with Amyotrophic Lateral Sclerosis.” It’s a randomized, double-blind, placebo controlled study to investigate a new neuron modulator. That’s a mouthful! For my fellow nerds, here’s a link to the study description.

My journey with GDC-0134 began last October when I was the “patient face” for Genentech’s grand rounds. This is Genentech’s first time in the ALS space and I was honored to represent the community of patients living with ALS. The team proudly presented its years of work and was anxiously awaiting FDA approval for a new investigational drug.

Eight patients nation-wide have participated in the first arm of the study; three more study arms are planned pending review of the initial safety data. There is a long way to go as this is the first step of the clinical trials.

Before checking into the hospital, I had two pre-trial appointments chockfull of surveys, blood tests, vitals, EKGs and eye exams. I was admitted into the hospital yesterday and had about a zillion pre-dosing baseline tests. You know how hospital stays go, the nurse took my vitals every two hours through the night. I took the new medication at 8:00 this morning followed by blood draws, vitals, and EKGs every 30 minutes for two hours. Then every hour, now we are down to every two hours. Hopefully Wednesday through Friday will be more restful.


Guinea pig pic

Why am I choosing to be a guinea pig? Why am I subjecting myself to weeks of hospital stays and endless needle pricks? If GDC-0134 proves safe and efficacious, it won’t be available for years — I need a treatment now.  So why subject myself? Because I can. I have the opportunity to make a difference. Even if I don’t benefit directly, my participation will add to the body of knowledge and get us one step closer to an effective treatment.

I can’t do this alone. Thank you for all the love, prayers and support.

I’m Forgiven and Free and one step closer to a cure


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