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Finding Freedom

Living Forgiven and Free

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ALS Journey

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.

 

Right to Try: A Call to Arms

People I respect have told me Right to Try is feel-good, unnecessary, and toothless legislation. What I hear is them telling me no, again.

Right to Try is a call to arms for ALS patients to demand access to potentially life-saving treatments that exist today.  There are possible treatments sitting in the pipeline with years to go before they receive FDA approval.  Tens of thousands of people have died waiting for an effective treatment. Most of us living with ALS today will die before these drugs get to market.

That is not OK with me or my friends and family who love me.

Even before Right to Try legislation (which removes the FDA paperwork requirement) passed in 33 states, qualifying patients and doctors could petition the FDA to get access to treatments in the pipeline under the Compassionate Use or Expanded Access Program. The lengthy paperwork processed has been trimmed and the FDA approves most of the requests. So what’s the problem?

Drug companies are in the business of making money by selling drugs, and they can’t sell a drug until it gets FDA approval. It takes 7-10 years and 2.5 billion dollars to get a drug approved. There are no incentives for drug companies to provide unapproved drugs to patients under Expanded Access or Right to Try. They only face risk, liability, and perceived interference with clinical trials.

So there you go. Thousands of people die because the drug companies can’t tolerate any more risk or liability.  Can the FDA alleviate the risk and liability? Yes. Will they? Not yet.

I say not yet, because I believe it can happen. 

I was interviewed for a recent Sacramento Bee Article.  The reporter did a fair job presenting all sides of the argument. My favorite quote is, “There’s a lot in the pipeline; we have nothing that works, and we’re dying quickly,” Hoover said. “I’m extremely persistent, and I will keep asking until I get a yes. My alternative is to do nothing and die. It’s worth a fight for me to do it.”

I have a real problem with the quotes from Don Nielsen, director of government relations for the California Nurses Association. He said he’s concerned that patients will become “guinea pigs for the pharmaceutical industry.”  I’m already a guinea pig for the pharmaceutical industry. So that’s not an issue.

He went on to say, “The reason no one in the process wants the liability is because (the drugs) haven’t yet been tested.”  Wrong. A drug has to pass Phase 1 safety and tolerability  trials before being eligible for Expanded Access or Right to Try.

Neilson continued, “It’s potentially a very unsafe situation for a patient. They’re being exploited by drug companies that could make a lot of money off the individual and not be held accountable.” I would love to have a sit down with Mr. Nielsen and explain to him that I have already taken a greater risk by participating in the Phase 1 trial — it was the first time the drug was tried in humans.  Also, drug companies can’t charge a patient more than it costs to manufacture. How much I spend on a drug and the risk I am willing to tolerate is not his concern. Here’s your nose back Mr. Nielsen, I found it in my business.

The ALS community is perfectly positioned to put Right to Try to the test and persist until we get a yes. The patient criteria is like an ALS biography:

  • Terminal diagnosis
  • Exhausted all available treatments
  • Ineligible for ongoing phase 2 and 3 efficacy trials

Check, check, and check. ALS is 100% fatal. We have no treatment, and we are not eligible to participate in phase 2 or 3 clinical trials 24-36 months after symptom onset.

We need to come together and demand access to potentially life-saving treatments. The time is now.

Tricket me beth

Pictured with me are two other women with ALS. We were in Washington DC in 2014 asking legislators for research dollars. Beth on the right is still in the thick of the fight. Sadly, Trickett in the red jacked died before an effective treatment was found.  Carrying her name, the Trickett Wendler Right to Try Act of 2017 will provide federal protection for states that have approved Right to Try laws.  Here’s a link to the recently passed California legislation AB-1668 if you would like to read more about it.

Quite frankly, I’m pissed. The solution is simple, even the FDA says it’s possible.  Yet most of the medical community and pharmaceutical industry are against it.

They are literally protecting me to death.

I spoke at a conference a few weeks ago about designing patient-centric clinical trials. Of course, I brought up Right to Try to the audience of pharmaceutical employees. One astute participant asked me, “What do you think needs to happen next?” I replied that the FDA needs to remove the risk from drug manufacturers and put into writing that compassionate use will not jeopardize their clinical trials. And secondly, and more importantly, the ALS patient community needs to get loud and demand access.

Remember in the early 80s when people were dying from AIDS? Treatments existed and patients didn’t have access. Angry, dying people acted up and persisted until patients got access to life-saving drugs. Now AIDS is a treatable, chronic condition. They didn’t passively wait decades for the FDA, medical professionals, and drug companies to work it out.

We can’t wait any longer either if we want to live.

Where does compassion intersect industry responsibility? I say here and now.  I will not take no for an answer and neither should you. Ask your neurologist for access to drugs in phases two and three. If he or she says no, find a neurologist who will support you.  If your state hasn’t passed Right to Try legislation, ask under the Expanded Access program.

My ALS friends, we must unequivocally and unilaterally persist.  We cannot stop when we hear a no. Go around it. Start a social media shit storm. Do whatever it takes. We have to because our lives depend upon it.

I’m Forgiven and Free, extremely persistent and will be putting Right to Try to the test

p.s.
Please share this post and add your wisdom as to how we can make this happen. Imagine  if several hundred or several thousand of us showed up in our power chairs! I just had a vision of us being arrested and the officers having to use Hoyer lifts to get us into the police cars. That would be fun. Let’s do this.

 

Inspiration

The act of breathing in.

The process of being mentally stimulated to do or feel something, especially to do something creative. 

The supernatural work of the Holy Spirit.

I received a pleasant surprise in the mail today.  This picture of my precious grand daughter giving me a kiss was on the cover of a pharmaceutical company’s annual report. A similar picture hangs in the company’s board room along with pictures of several other patients. The CEO wants to remind board members that serving patients is their inspiration.

I heard today that inspiration is closely tied to creativity and ultimately connected to hope. Oh Lord, I need hope. I have down days in which hope eludes me. I have thoughts of life with ALS being too hard.  It’s a cruel disease. All thoughts of life-extending interventions are off the table. Just hunker down, this will be over soon.

Ok. I can’t stay there. It serves no one.

Hope is what moves me from despair to gratitude. I think about what inspires me to keep living:

  • The love of God, my family, and friends
  • Serving and encouraging others in creative ways
  • Being present and finding gratitude in the moment

What’s your inspiration? Leave a comment so we can learn from you.

I’m Forgiven and Free and inspired by you!

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