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Finding Freedom

Living Forgiven and Free

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Freedom

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.

 

 

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.

 

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.

divided

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.

 

 

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

The Four Agreements

Years ago I read the The Four Agreements: A Toltec Wisdom Book by Miguel Ruiz, and forever changed how I navigate life.

The pan-theological introduction challenged my sensibilities. Ruiz describes Toltec wisdom not as a religion but rather a way of being.  It took several readings and serious introspection to begin applying the wisdom internally.

The Four Agreements

#1 Be Impeccable with your word
#2 Don’t take anything personally
#3 Don’t make assumptions
#4 Always do your best

Pure Light, Pure Love

Ruiz claims, “Everything in existence is a manifestation of the one living being we call God. Everything is God…human perception is merely light perceiving light. Everything is a mirror that reflects light and creates images of that light – and the world of illusion, the Dream, is just like smoke which doesn’t allow us to see what we really are. The real us is pure love, pure light.”

The more I read and looked for meaning, the more I realized the wisdom contained in The Four Agreements can be found in the Bible as well. The difference is the source of love and light. Jesus is my light and salvation. and God is pure love, not me. 

Yes. Everything is existence is a manifestation of God. In the beginning God created the heavens and the earth. Genesis 1:1 

Jesus is the light and he lives through us. I believe we reflect the light of Jesus through how we live our lives. When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.” John 8:12

For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. 1 Corinthians 13:12

It makes sense. God is pure love; Jesus is pure light. Yet, we only see a reflection and can’t fathom the depths of love nor understand why things happen the way they do.

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. Isaiah 55:8

Why, you do not even know what will happen tomorrow.  What is your life? You are a mist that appears for a little while then vanishes. James 4:14

Challenging My Agreements

As a child, I believed what my family, place of worship, community, advertisements, and society told me to believe. I made agreements as to what is right and wrong, attractive and ugly, appropriate and improper. Not that there is anything inherently wrong with this system; we need societal norms. But Ruiz suggests that we challenge our long-held beliefs on our journey to personal freedom.

What if I’ve agreed to a lie?

I’ll be blogging more about how each of the Four Agreements has helped me on my journey to forgiveness and freedom.  In the meantime, check out the Four Agreements for yourself.

I’m Forgiven and Free

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