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Living Forgiven and Free

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ALS Journey

An Open Letter to the ALS Community

I’ve lived past my expiration date and I’ve still got questions.

This month marks five years since my ALS diagnosis with a 2-5 year prognosis. I’ve crammed a lifetime of living, loving, learning, and advocating into those few years and I’ve still got questions.

I’ve met hundreds of patients and their families, caregivers, advocates, medical practitioners, researchers, drug developers, regulators, and legislators and I’ve still got questions.

Last week, I was reminded at a meeting of people with ALS and FDA regulators that we are all one ALS community. I would agree that we all have a common goal of finding an effective treatment or cure. However, I would argue that we look at the problem though distinct lenses. We champion our own point of view and often dismiss, distrust, or disparage community members who view it through a different lens. We disagree on how to reach the goal at best and cannibalize at worst. I’ve got some questions about that.

This problem is not new nor unique to the ALS community. But for now, my life and the lives of tens of thousands of other people currently living with ALS depend upon an immediate solution.

The National ALS Association led an effort to create an FDA guidance document to facilitate the clinical trial and drug approval process. It was presented as a collaborative effort, inclusive of all parts of the community. The voice of the conservative neurological science community dominated the conversation and document. Looking through their lens, it was a big win. Looking through my lens, it tragically meant we support the 12+ year, $2.5 billion, status quo drug approval process. That means the research community keeps their version of perfect science while patients like me are guaranteed to die waiting. I understand their position, they are desperately searching for an effective treatment and are unwilling to change because they want a scientifically proven treatment. They truly believe that is what’s best for patients. Drug developers are looking for an effective treatment as well and their lens includes dollar signs and a highly regulatory environment. The FDA would be thrilled to approve a treatment that has been proven effective by passing the gold standard of trial design. I want access to potential treatments now. My lens is urgency and access, period.

Can someone please draw a cartoon of this conundrum?

Here’s the deal. I, along with many others, have tried to gain traction on pressing for bold changes to this process. Today, I was asked by Sandy, a newly diagnosed woman, “Why isn’t something being done? What can I do to create change now?” My heart sank. If I knew what to tell her, I’d be doing it myself. She is one of the lucky ones — participating in a stem cell clinical trial. But, dear God, the study protocols are nothing short of barbaric. Sandy is voluntarily being denied access to currently approved medication for three months to see if she declines rapidly enough to be included in the study. If she progresses enough, she still has a 50% chance of a placebo being surgically injected into her spine. Here’s the real kicker: If Sandy gets the stem cells and shows improvement, she will not have access to future treatments for years. Barbaric.

They’ve got their conservative science that looks promising. Sandy is a desperate, dying woman. She feels it’s her responsibility to endure this trial to benefit patients in the future. Can someone please explain to Sandy’s family how this is okay? A promising treatment exists but your wife and mother is a lab rat and can’t have access to the treatment outside of a barbaric clinical trial.

Nothing is going to change until the patient community demands it. We have to find a solution that creates a win for those of us living with ALS. Let’s take an honest look through each other’s lenses and find a compelling solution. We need a Manhattan project, funding the brain power and advocacy to make it a reality.

Here are my questions:

Who has the leadership, resources, and influence to create a win-win for the entire community?

What barriers are preventing this from happening now?

I’m sitting in my hospital bed, typing with my eyes. Yet, I believe I can make a difference. What if those with resources and influence acted as though their lives depended upon finding a solution now? The answer is out there. Please help me find it.   

The Surreal Gift

My bed gently rolls me from my side to my back. The familiar hum of the bed rouses me. You know that place, you’re half awake and half asleep? I open one eye, just a sliver, to see if the sun is up. Yes! Time to get up. In my mind, I sit up and swing my legs off the bed. “Steve, you won’t believe the dream I had. I was paralyzed and completely dependent on you for everything. It was crazy!”

My attempt to sit up met with resistance. I’m reminded of the reality, this is not a dream. I feel perfectly fine, not sick, like a dying person is supposed to feel. Yet, I can’t move because ALS is killing off my motor neurons. Surreal.

The Gift

Psalm 46:10 says, “Be still and know that I am God.” I read that and think, be present, let go of results, don’t worry about what tomorrow will bring. Then, I remember Matthew 26, “Do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?” Each faith tradition speaks to being present and at peace. That’s the gift. Let’s practice gratitude and peace, regardless of circumstance.

What’s stopping you? Root it out, let it go. No buts, be still.

I’m Forgiven and Free and still 😉

Top Ten List

I’m not dying anymore. I’ve outlived my 2 to 5 year ALS prognosis and I’m done being sick. I’ll continue to advocate and irritate until we have an effective treatment, but until then, I’m choosing to LIVE without death hanging over my head. I know a band of heroes and sheroes who are showing me how it’s done.

You’ve read my laments; I anticipate mourning losses to come. My life is different than I expected, but it is what it is. I once said in an interview, “There aren’t many people I’d trade places with in this life. I’ve got it pretty good.”

Here’s the top ten list of the upsides of my less physical, more cerebral life. In other words, the benefits of holding still:

10 — Plenty of quiet time
9 — Rarely need an alarm clock
8 — No housework
7 — Preferred parking
6 — No expensive gym membership
5 — Manicure stays perfect
4 — Feet stay callous free
3 — Only need to tan my front side
2 — I’ll never need a knee or hip replacement
1 — Did I mention no housework?

There’s always a bright side. I have my top ten list, the most supportive family and friends, and my faith.

What’s on your top ten list?

Blessed Are Those Who Mourn

I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief.

My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things in frustration, followed by the snot-faced ugly cry. You know, the cry that mocks your Kleenex.

I adjusted, adapted, accepted, and returned to gratitude. I found a new normal with the help of family and friends.

My arms and hands betrayed me next. Goodbye driving, feeding myself, and giving hugs.

So, I adjust and adapt. Technology helps. Yet, I haven’t found my new normal.

I’m in the throes of grieving and the tears show up uninvited. I keep the grief hidden until it forces its way to the surface, like a foreign body that needs to come out. There’s no stopping it and it hurts like hell.

I mourn the everyday use of my hands, but I’ll adjust to someone else bathing and feeding me. I use my eyes to type and text, hands free. What I’m having difficulty losing, that no one and no technology can replace, are the simple pleasures of teaching my grandchildren. I’d dreamed of being like my grandmas. One taught me to crochet, and I picked cucumbers with the other. We baked and shopped, read and played games. Above all, I felt their love.

With my grandchildren, I want to play silly duets on the piano. I want to make sandcastles on the beach, cookies in my kitchen, and strings of popcorn and cranberries for the Christmas tree. I want to play hide and seek and tickle their tummies when I find them. I want to hug them and put Band-aids on their knees. I have to accept the fact that I never will.

What I fear the most is being a disengaged grandma that isn’t able to show my grandkids how much they are loved and adored. I fear missing out. I’m profoundly sad and know I have to grieve before I can move past this.

I share my pain and struggles in this public forum because I promised to be authentic and transparent on my journey. I know it’s hard for you to read this. Please don’t feel sorry for me. Compassion is welcome, pity is not.

So, what now? Have you lost someone or something important? Allow yourself to grieve, it’s part of the healing process. Do you have a friend going through a difficult time? Come alongside and sit with him or her through the silence and tears. Don’t say or do anything to fix it. Just be there.

My tears will stop. My family and I will find a different way for me to stay engaged. I have no doubt. I will adjust and adapt. Eventually, I will accept it.

I’m Forgiven and Free and on the road to gratitude.

Let me know if there’s anything you need!

This is for people who are going through a difficult time and could use the help of your community or for people who know someone who is.

First, let me talk to the people who are going through a life changing crisis. I get it. I have ALS, a fatal neurodegenerative disease that has turned my life upside down. I’m a proud woman, my husband and I have done everything on our own. We don’t need help. Have you told yourself a similar story? I don’t want to bother anyone, we’re doing okay. I know that story too.

Three words: get over it. Three more words: you need help. Here’s another way to look at it. Remember how good it feels when you help someone else? Well, don’t be a jerk and deny your friends that experience.

Now for the friends who want to help but don’t know what to say or do. The worst thing you can say or do is nothing at all. I know it’s hard. It’s awkward. Here’s a start, call or text your friend and arrange a time to visit and say, “Good to see you!” That’s a better greeting than, “How are you?” Save that for later. If you don’t know what to say, be honest. “This is awkward, I don’t know what to say. But, you’re my friend and I’m here for you.” Love your friend enough to get over your uncomfortable self.

With all good intentions you may say, “Let me know if there’s anything you need.” I know you mean it. I’ve said it too. But the problem is, it puts the responsibility on the person to come up with something. And, it’s difficult to accept help so you probably won’t get the text asking for it.

The Practical Stuff
Everyone and every situation are different. A person recovering from chemotherapy has different needs than a person who has lost a loved one. Yet, some of of the social and household needs are universal.

Social Needs

  1. Text, send a card, or call. Let him or her know you are thinking about them. Feeling forgotten or isolated is awful.
  2. Arrange a visit. You don’t have to stay long. Watch for cues. If she’s falling asleep, take the hint. If he’s not feeling well, don’t take it personally. The important thing is that you showed up.
  3. Keep texting, stay in contact. Even if you don’t get a response, stay connected.

Household Needs

  1. When you stop by for a visit, take a look around. Is the yard a mess? Tell him you’ll be there Saturday morning with a yard crew. If it’s a prolonged issue, rotate with some buddies and take care of the lawn for a few months.
  2. Visiting for a few hours? Check the laundry basket. Tell him you’ve got time to wash, dry and fold a few loads.
  3. Bathrooms gross? Grab the cleaner and clean it. Bring a friend and clean the whole house.
  4. Food, everyone appreciates food. Be the point person and email coworkers and friends, share preferences and restrictions. Bring freezer-friendly meals with the appropriate number of servings in disposal containers. Label the lid with what’s inside and the date.
  5. Don’t forget the spouse, they are carrying a huge burden. Get them a gift card for their favorite activity and offer to stay while they go out. For example, my husband loves to golf, but feels guilty leaving me alone. So, you can come hang out with me while the guys go Top Golf. It’s a win-win.
  6. Are the kids going bonkers? Take them to ice cream or a movie. Dog getting ignored? Take her to the dog park. Notice the dog food is running low? Pick up a bag.  

Personal Care. I can only speak for myself on this one. Well, because it’s personal. You will know what your close friend needs.

  1. Arrange for a pedicure. If you’re friend can’t leave the house, bring the pedicure to her.
  2. Pluck her unibrow or Nair her legs.
  3. If you’re a natural caregiver, learn the morning and/or evening care routines and take over for a day.

I can’t speak for everyone in need. For me, it’s hard to ask for or accept help. But, I know I need it. I’m probably not going to ask, so just do it.

What should you do to help a family who needs a hand?  Consider what you like to do — cook, pray, fix things, sit and visit? Do something you enjoy and it will be a natural extension of yourself. The most important things are to do something and find a way to stay connected.

I’m Forgiven and Free and grateful I have friends who show up and help me.

Life or Death

Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.

I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak.  I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit. 

Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.

Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.

People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.

Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled.  Downright shameful.  I didn’t realize the magnitude or consequence until I was one of them. 

To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.

Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference. 

Are you living? I  mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.

I’m Forgiven and Free and living the life given to me

Checking In

Unpublished blog posts sit abandoned in my draft folder. One is bitter;  Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.

Physically
The functional use of my arms is gone. That means I can still use my arms to knock things off the counter, but that’s about it. If we meet for lunch, you’ll have to feed me. Don’t worry about the mess. I’ll have a color coordinated bib, with a convenient Velcro closure,  neatly stowed in my pee bag.

The real bummer is that my progression has reached my mouth and throat. The changes aren’t noticeable unless you live with me. But the signs are unmistakable — excess saliva, choking on air, hoarse, reduced voice volume, muscle spasms in my throat and neck. And when I’m tired, I sound like #45 with dry mouth, “God bless the unitshed shates of amershith.” I have an appointment at the multidisciplinary ALS clinic next week and will meet with the speech the pulmonary therapists. I had been hoping for an effective treatment before I reached this point, but it is not meant to be.

Emotionally 
I’ve been struggling.  My emotional bandwidth isn’t there as I’ve switched from waterproof mascara to no mascara at all. Two local friends with ALS died this week. Tammy was the second woman I’d met with ALS. I was drawn to her gentle spirit, strength, and endless optimism. JT had unmatched charisma and charm, and a wicked sense of humor. Both were deeply loved by family and friends. Coping with my own loss and sadness for Tammy’s and JT’s families is overwhelming.

Spiritually 
I’m at peace with my maker yet miss being part of a faith community. I’ll add this to my New Year to do list.

Return to Gratitude
There’s a time to grieve and a time to live. I do both with profound gratitude and peace in my bones.

What are you grateful for today?

I’m Forgiven and Free and grateful I get to try a recently approved medication that may slow my progression!

radicavapic

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.

 

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