In response to The Daily Post’s writing prompt: “Twenty-Five.” I need these 2 vowels to not be silent today.
“I” for Inspiration:
Last summer, people of all races, ages, abilities, and incomes were inspired by the #ALSIceBucketChallenge (IBC) to dump a bucket of ice on their heads or donate money in the name of ALS …including me!
Some vocal folks thought it was crazy or a fad.
Not me. My mom had ALS….See post: https://carpooldaze.wordpress.com/2014/10/27/come-talk-to-me/)
“E” for Exuberance.
Heart leaping, joy skipping, spirit soaring exuberance is what I felt yesterday in discovering that the IBC has raised over $220 million dollars worldwide…since just last summer. http://www.bizjournals.com/washington/news/2014/12/12/ice-bucket-challenge-has-raised-220-million.html
And…..then the news gets even better.
The dollars raised are in already in action!
Multidisciplinary ALS clinics that had been previously closed are begin re-opened and re-staffed, new research is being funded, essential patient programs, services, and technology are being re-ignited and delivered. See http://www.alsa.org for details.
Lives are changing.
A simple challenge started in Boston.
Enormous impact worldwide.
Thanks to the Frates family and friends!
“In the midst of winter, I found there was, within me, an invincible summer.
And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” (Albert Camus)
Overwhelmed by grief? Can’t shake a loss?
There is light ahead.
I promise you.
Here’s my story on how I (and others) finally found a way out.
To a sense of peace with the past.
If you are stuck grieving, angry and confused, your road ahead will diverge into two paths.
Take a solo path (like I did) and run away from it, you may hurt for a long time.
But if you slow down, run towards the grief and reach out to others, you will find the brighter way.
You wont forget your loss or the person who hurt you, oh no.
But you will be on the road to healing, health and happiness sooner.
Maybe even able to help others.
As I sat down to finally write this, it has been over 20 years since I saw my beloved, awesome, funny, amazing Dad take his last breath of air.
For 16 months cancer ravaged his strong body.
I was only 21 when he died.
In shock for months, I made the executive decision it hurt way too much to deal with it.
I had to be package it away in a wooden box and put it up on the shelf.
Get through school. Get a job. Get on with life. I’d deal with it…later.
That anger, lump in my throat, tightness in my chest, tears welling in my eyes.
We are so small but the pain of loss can be so immense.
The blur of loss.
A year after Dad died I remembered at times feeling like I was in a glass room.
I was sad and so angry.
I wanted to smash the glass that surrounded me with a steel wrecking ball.
To get outside of the grief I had kept inside.
Yet, I had no glass house….no wrecking ball.
Every time those emotions came up, I pushed them right back into the box.
I chose instead to work my ass off and exercise every day to find peace.
Years of counseling and “anxiety” medication Drs. gave me did nothing to help me navigate the grief.
So I stayed on the move.
I worked in sales and traveled every week for a internet start-up business.
I made it to the gym at 5am every day.
Sundays were painful for a long time. So slow and quiet.
If I had to go to Church, or just “be”…my mind would wander to my Dad-gone.
Then, I would feel trapped back in that darn glass room with the grief monster!
Nowhere to hide.
“I never knew grief felt so much like fear?” wrote C.S Lewis.
Eight years after my Dad died of cancer; my mother was diagnosed with ALS.
With ALS, I learned Mom would become 100% paralyzed within months or a few years.
Mom would eventually only be able to communicate with her eyes… then die.
My God…where are you?
So, at age 30, I quit my job to be with her. To care for her.
My husband and I rallied a care team to help my sisters and I manage the ALS.
We had no ALS in our family history.
When the neurologist at Johns Hopkins tested mom’s muscles and drilled her on her past, He asked if she had any physical or emotional trauma (Yes, she had some. Could that spur disease?).
The cigarettes and Manhattans did not seem as of interest to him.
It was the heart wrenching, brain draining, emotional and physical trauma he focused on.
It’s like those tears you refuse to cry become icicles inside.
Mom died 4 years into her diagnosis….100% paralyzed, could not speak or move.
I was 34.
My long road to healing.
A month after my mom died of ALS, I was sitting on a cozy couch in the office of a RN name Margaret Nunez who specialized in grief therapy. I had been referred to her by my Dr. who was concerned about me.
I was wondering why I could not move on “normally.”
Normally? What is normal?
This hurt. So, I wanted to know how to get through those stages of grief faster.
With a brand new baby girl and a 16 month old little boy, I had to get clear.
“The loss of a loved person is one of the most intensely painful experiences any human being can suffer.” (John Bowlby)
She looked right into my eyes and said ,“Grief has no timetable Amy.”
Not what I wanted to hear.
“Two weeks is the amount of time the outside world moves on. Someone who suffers a loss, tragedy, or diagnosed with illness does not move on as fast.”
Then she said:
“To begin healing, you need to find a mentor. A community of support. And follow your passion…do more of what gives you joy, daily.”
Good thing: I chose to follow my passion (running outside).
Bad thing: I ignored everything else she said.
Reaching out would make me way to vulnerable.
So I put the pain of losing Mom in that box with Dad.
Will “deal” with the hurt later.
It took me 6 more years to realize I had to stop running away.
Time to grow. Time to deal. Time to let go.
For my own little family.
I had kept the grief monster in a box for 20 years!
We all know long term grief and stress is not good for mind or body.
I made healing a priority.
I was going to finally figure out how to deal with the grief.
It was scary.
You see, sometimes grief is the only thing to hold on to. You can feel it intensely.
So I guess I held on tight.
I could not move on alone (exactly as the RN had said 6 years before!).
And, it would take way more work than reading handouts on grief my church gave me.
Yet, I had no idea where to turn locally in Charlotte.
Where is Lucy and her stand?
Hey you! Want to heal your grief? Stop here like Charlie Brown does for some advice.
So, I did some research online.
I found a resource out west and booked a trip to Golden, Colorado for a “Transformation Camp” weekend.
Hubby watched kids and I flew away for a “fitness” weekend. 🙂
Transformation “Camp” was life changing. Life re-directing.
I met my amazing team in the hotel before boarding the bus to the gym.
All ages. All backgrounds. All had suffered losses that had kept them stuck.
For three days, we circled up, shared our stories, laughed and cried.
We worked out together, ate clean meals, talked, thought, and built friendships.
Relationships that I still have today, years later.
In this circle of trust we learned we were not alone. That fact alone can change lives.
This is what I learned works to heal old wounds.
8 Tips to Take Action on Your Grief Today.
1. Grab a Hall Pass
This is big. Give yourself a freaking break. Forgive yourself for holding on. You loved!
Reach out. As soon as you are able. Raise the white flag. You cannot do this alone.
Whether a loss just happened, or it has been chasing you for a lifetime, connect with others. Loneliness is not a long term option if you want to heal.
You have to be proactive. Be your own advocate.
Find a community you can relate to. Then go check it out. Bring a friend for your first visit if you need motivation. This community might be found within a church, a religious center, a local respite center, local veterans group, art or music therapy group, outdoor fitness group, local college, fitness club, alumni group, senior center, AA, ALANON, etc. So many options.
Cant find one? Create your own tribe. This community should be both online and offline for max connectivity and accountability.
Often the hardest part. Forgive those people who have hurt you.
Release them from hurting you and owning space in your brain.
If someone says: “Is this gonna be your life story?”
Or, OMG, “It’s TMI.”
They just do not get it, for whatever reason.
You wanted to move on. You just did not know how.
If they keep judging you.
As my pastoral counselor Jim once said, “Just fuck ’em.” Yes, he said that.
4. Sweat it out & Get outside
Exercise is some of the best medicine for mind, body, spirit.
Exercise outdoors = Bonus endorphins.
Be intentional (and vigorous) about this when you are feeling blue or under stress.
Running, walking, working out at a gym, outdoor bootcamp, yoga, golf, tennis, swimming, biking, whatever works for you. Just get out there and do it. One step at a time. Sweat.
5. Do what you love
What brings you joy? What are your passions? What gets you in the flow?
6. Know you are not alone
This is key.
We are no so alone in our crazy ways.
Everybody Hurts Sometimes (1st saw REM sing this in Athens, GA)
My thought after all these years is it isn not Gods fault. He hurts with us. Why can’t his people on earth figure out disease? If are too shy to reach out ask him to walk with you. Really. Try it. You will learn you are never alone.
7. Get Expressive.
Write it all down. Great therapy. Be authentic. Cathartic. Write to music you love. Write songs. Take up art. Whatever you need to express, do. Then share it! It may set you free and…light the way for others.
8. Pay it forward
When you finally begin to heal. Help others.
We are our bothers and sisters keepers, right?
Shoulder to shoulder. Arm in arm. Onward.
There you have it.
8 ways to find your invincible summer.
Fin. ARP Nov. 2014
* I do not claim any rites REM, Warner Brothers, this video or music.
Recently I was listening to Pandora in the carpool line, when my mind wandered to the successful #ALSicebucketchallenge and a visit of its co-founder, Nancy Frates whose son Pete has ALS.
“Come Talk to Me” by Peter Gabriel came on the station.
It immediately resonated. I looked it up online. Come Talk To Me Peter Gabriel
I learned he wrote it about communicating with his daughter.
Communication – isn’t that what we all want? What we need more of?
Come Talk to Me.
This song reminded me of my mom who had ALS.
When Mom first showed signs of ALS, it affected her speech.
She began to slur her words.
When she called friends or businesses she knew, they thought she was drunk, so hung up.
3 years after she was dx. with ALS Mom became totally paralyzed.
She often had to rely on people coming up to her to talk.
Come Talk to Me.
As the ALS progressed in her body, she could not speak or type on a computer.
Her facial muscles weakened, so eventually it became difficult to read emotion on her face.
The worst part of her ALS for me was when we really struggled to communicate.
Because in the end, she could only communicate with her eyes.
Upon hearing this song, my thoughts about the ALS challenge came full circle.
The #ALSicebucketchallenge and ALS is so much about communication.
Social media was the perfect platform.
What if you have ALS and you cannot talk, walk or move well but your brain still works?
You CRAVE to converse, to sing, to run, to play instruments, to write and type.
You want to SCREAM from a mountain top.
You want to SHATTER the glass walls around you with a wrecking ball.
But you can’t.
So what can you do to get attention?
Embrace 21st century technology!
That IS it! That is freaking it!
The #ALSicebucketchallenge is a rally cry.
Yes, a battle cry by the ALS community, and for all of those who suffer from incurable diseases and can’t advocate for themselves.
Come talk to us. Stop looking the other way.
This challenge rocked the world.
Like ALS rocks ours.
Come talk to me.
In January 2000, my sisters and I learned our mother had a strange disease called ALS.
It was a cold, rainy day when we found out it was ALS.
Even the doctor’s office was grim when we waited for the diagnosis.
When the young neurologist finally walked in the room she said,
“You have ALS. I am sorry.”
I am sorry?
“There is no cure….”
Then she said, “We all die someday…it is just a matter of how.”
OMG, what a thing to say!
As my body tried to fight back the tears my heart ached and my lungs burned.
Our dad had died 8 years earlier of Cancer. That was hard.
Now Mom had ALS, an insurmountable diagnosis. What would this bring?
I hugged my mom and asked the doctor, “What can we do?”
“Well, there is an interesting study going at Johns Hopkins. You should call the lead researcher.” (I later learned the study was with mice.)
She scribbled his name on a little piece of paper.
My God, my God…where for art thou?
“Good luck” said the Dr. as she disappeared from the room.
Good luck? We got out of that hell hole as fast as we could.
I read all about ALS that night and cried myself to sleep.
My pillow was soaked with tears.
ALS moves fast.
Most ALS patients become 100% paralyzed within months or years, yet their mind stays intact. Many patients die within two to five years.
Yet, while living with ALS, patients lose their ability to walk, speak, feed themselves, lift a glass, hold a pencil, hug their children, or pet an animal.
In the later stages of ALS, patients are only able to communicate with their eyes.
Then they lose their ability to breathe and die.
Why does this happen?
In a normal situation, the brain sends out messages to tell the body and muscles to move, or take a certain action, the message carriers deliver the message, and we move.
With ALS, the message carriers (motor neurons) die so when the brain says go do this action, the muscles don’t get the message, so they begin to atrophy and paralyze.
The conversation just stops.
As a newly diagnosed ALS patient, you might be brave enough to walk into an ALS or MDA support group meeting.
There you will see patients of all ages, races and stages of ALS, but also see reps for power wheelchairs, accessible vans, ventilators, breathing machines, Hoyer lifts and portable ramps.
Just Imagine what you get to look forward to!
Mom remained positive throughout her journey with ALS, but as a newly diagnosed patient, she walked in-and then right out of her first support group meeting.
Mom was very outgoing and loved interacting with people.
She was a business entrepreneur and active citizen.
She also loved singing, biking, working out, dancing and playing her piano.
ALS first attacked her speech.
Then it affected her hands.
So, Mom could no longer play the keys on her piano.
Her handwriting soon became illegible. Within a year it became impossible for her to hold pencil, or type on a keyboard with her fingers-even with the lightest (like a feather) touch.
As a result of the atrophy in her hands, Mom also had problems feeding herself.
It was very uncomfortable for other people to see her eating or being helped to eat, so like many patients, she stopped attending events she loved where food was served, or just would not partake at an event while others were eating.
Then it progressed to her legs.
I vividly remember one day early in her diagnosis when we were driving back from Johns Hopkins. The appointment with the neurologist and drive back had been really tough.
It was raining.
Happy to be safely home, we parked in the garage and headed towards a short ramp to the elevator at her apartment. The pavement was slick from the moisture.
She was using her walker shuffling ahead to the elevator. I was holding groceries and close behind her.
Suddenly, she lost balance and began to fall forward as she got to the cement ramp. HOLY SHIT!
We both screamed in pure terror as I dropped the bags, grabbed her by the waist, and pulled her back with all my might to prevent her from dropping face forward. I am thankful to this day she did not smash her beautiful face.
We realized right then we needed to get a wheelchair for safe transport.
Soon thereafter, we would get calls from Mom often at 2 and 3 am because she had fallen out of her bed. It took brut physical and mental strength of both my husband and I to lift her back into bed safely.
We knew we needed more help.
Thankfully, mom had purchased long-term care insurance (LTC) eight years earlier after my Dad died, so we were able to hire CNAs to help us at night. It was peace of mind and respite for us, but a major loss of independence for mom – just a year into her ALS.
Many patients have to rely solely on their family, friends or neighbors for help.
She began losing weight quickly.
What a diet eh?
The Dr. said we needed do go ahead with surgery for a feeding tube. She had never had surgery before so we were scared, but installing a tube would ensure she would get the life saving calories and nutrition she needed.
She had to do it, or else. So one day in the back pew at church we made the tearful decision to get it done.
We went through four wheelchairs in three years, the last one being a shiny red power wheelchair, just like the fancy one we had seen at the very first support group meeting.
By this time, Mom was almost totally paralyzed. But she was able to “drive” the wheelchair via a tiny switch on the arm pad.
This was great when she wanted to run away from us or get some speed!
Mom continued going to concerts and church on Sundays. She loved to hear the choir, organ music, and visit with friends, so she had always sat close up front.
Once she was in a wheelchair, she had to sit in the back of the church.
Please talk to me.
Church friends who normally talked to her would smile as they walked by us as they left the church. They could not understand what she said, or did not know what to say, so they did not try too hard. Awkward I suppose. So, communication was at a minimum.
Along our journey, a sweet reporter with Fox news in Washington, DC did a long documentary on mom, ALS, and our fundraising and advocacy efforts.
At one dramatic point during the filming, Mom said:
“I want to stand up and say please don’t ignore me!”
“I just want you to come talk to me!”
The lack of communication was painful.
She could hear but eventually could not speak.
When Mom could no longer speak or communicate with her hands or a laptop dictating her typing (think early version of Siri), we held up an alphabet chart in front of her, so she could “point and click” with her eyes what she desperately wanted to communicate.
Then she began to struggle to breathe.
Our gorgeous, outgoing, wildly fun Mom died in 2004, just 4 years into her diagnosis and 2 weeks after my baby daughter was born.
ALS brought this Type A girl to her knees.
No matter how fast we worked to obtain assistive technology, equipment, the insanely expensive medication for symptom management, and get the doctors, insurance, nurses, and care team aligned, as well as raise money for research; we could not halt ALS.
Think this is a fundraising fad?
Imagine having ALS.
Imagine desperately trying to communicate with your words or hands.
Imagine not being able to hug or hold those you love. imagine not being able to hold your child or grandchild safely.
Imagine trying to get to an ALS walk on time when the wheelchair does not work or the van ramp mis-functions.
Imagine not being able to get up Capital Hill in your power wheelchair on ALS Advocacy Day because, even with the power chair, it takes too much oxygen.
Imagine not being able to enter a house or business because there is no ramp to get in, nor door wide enough, nor accessible bathroom for you, your wheelchair and a caregiver.
Imagine being a caregiver to someone you love with ALS.
Imagine all that you see and do for your loved one to keep up with ALS. Then you pause and remember to show your love by wrapping thier arms around you for that hug, because they are unable to move their arms by themselves.
IMAGINE all this frustration! Then imagine not being able to verbally express it.
OR do anything to stop it.
There is good though. Really. You get something for going through ALS.
Gratitude, Humility and Community.
When you take care of someone you love who has ALS, you become highly sensitive and thankful for accessible parking spaces, supportive friends, businesses, restrooms, venues service providers, firemen and ALS/MDA support teams who come to the rescue.
You also become very thankful for any simple act of kindness people show, such as opening a door, giving a smile, making eye contact, lending a strong hand, stopping by for a visit, or simply making a certain transaction easier.
You also become utterly thankful for the doctors, researchers, scientists, microbiologists, ALS and MDA foundations, activists and advocates and big data. All these people and groups try year after year, to help slow or stop the progression of ALS.
This is why the #Icebucketchallenge is so amazing for all of us in the ALS community.
We are so thankful.
It gives us a way to communicate en masse and it continues to give a glimmer of hope.
A certain justice indeed. Take that ALS Monster.
Here is the kicker. This is why it matters so much.
It made a difference.
ALS was first discovered in the 1860 by the father of neurology, Jean-Martin Charcot. Yet it is 2017 and we still have NO cure. Like so many neurological diseases, ALS has not been profitable enough for drug companies to bring to market life saving therapies and discoveries. We have been waiting for progress for over 157 years.
Yet, the Ice Bucket Challenger has turned the tide.
My mom would have loved this.
Here is the impact you had as of 2017.
RESULTS: Ice Bucket Challenge Progress
Over $250 Million for ALS has been raised around the world.
ALS foundations, researchers and scientists have collaborated for the very first time. 80 researchers in 11 countries shared knowledge. #BeyondPublishing.
This Ice Bucket Challenge funded a new gene discoveries announced July 2016.
2 new drugs are in clinical trials with ALS patients.
100% increase in patient care and services.
$75 Million given to the Department of Defense to understand why Veterans are twice as likely to get ALS.
Clinical Trials Push.
FDA agreed to speed up clinical trials for ALS patients.
This happened in just 2 years!
We need to keep the momentum.
We need you #Changemakers to stay engaged.
One amazing discovery with ALS could open up a whole new world in nueromuscular research, therapies and cures.
Thanks to the Frates and 21st century fundraising.
We made this kind of impact together.
Fin. ARP Updated 5/1/17
*I do not own rites to this incredible music.