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Finding Freedom

Living Forgiven and Free

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Grief

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!  

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.

 

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

Unmet Expectations

sad-green-apple

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.

Grief to Gratitude

The more I lose the more grateful I become. My arms are clumsy and shake when I reach — I know someday they will be ornamental. So for now I am acutely grateful for typing and scratching my nose.

I can hold my head up and breathe on my own. I can speak and eat with ease. I am keenly aware of my great fortune.

My legs no longer carry me and my feet drop straight down. I am grateful to the point of tears for my power chair, patient lift, and hand controls in my van.

Actions you may pay little attention to, like getting in and our of bed are beyond my abilities now as ALS continues to take its toll. Thankfully Steve is always there to lift me and tuck me into bed.

Please don’t have pity. Rather, be grateful for all that you have and can do. Do you have a job that pays the bills? Do you have a warm place to sleep? Do you have at least one person in this world to love? Can you walk to the kitchen to grab something to eat? Be thankful.

I’m Forgiven and Free and choosing gratitude

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