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Finding Freedom

Living Forgiven and Free

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

Unmet Expectations

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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

Impossible.

Oh wonderful opposable thumbs, how I miss you.

Hey White Friends — Here’s Our Chance 

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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.

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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.

Why?

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

 

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: 

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