The Cost of Breathing

The Need for Mercy Giving…in the Immediacy.

If we wait to start giving, it’ll be too late…

I thought there used to be an old saying, an old adage – “won’t cost anything ‘cept the price of air…”  But I tried looking it up and didn’t come across anything, so maybe it was just something one of my grandparents used to say…it SOUNDS like something they’d say, anyway.

At any rate, back then it meant negligible; cheap; free, even. 

Now, we as a world, know the truth.  It’s priceless.

I discovered that almost seven years ago…the world is just catching up to what I already know. 

Breathing…is priceless.

All around me, I’m starting to see the whole world wake up to see how precious the ability to just breathe…really is.  Seemingly healthy people are fine one moment and then dying the next…because they can’t breathe.  And it’s terrifying…the fear of contagion, the fear of suffering, the fear of dying because of lack of medical resources, lack of knowledge about the disease, and the lack of treatment options.  People are feeling, on a GLOBAL scale, what we in the ALS community have been suffering with for years…and, well…that kind of fear…it’s valid and very, VERY real.

Breathing is PRICEless.

And up til now, most people have been able to spend their entire lives without realizing what a precious commodity it is.  You just don’t think about it until there’s a reason you have to…because it becomes difficult to do so…or you are watching someone you love struggle to coax oxygen into their lungs and release a breath back out into the air…

I think we’ve all, at one time or another, thought about what we, personally, would consider the worst way to die.

When I was kid, I was terrified of drowning. 

There was just something about it that seemed so horrifying about dying that way…because of the inability to breathe…about the awareness of that fact…the futility of the endeavor…and then, the terror that must ensue……..until blackout.

These last few weeks, my position as a ‘Jill of All Trades,’ has meant that I’ve been privy to various undercurrents of focus, worries, and struggles that are being shared and discussed among different groups of people.  All of them have the obvious concerns in common, but each one also expresses apprehensions about life that are unique to their own separate situation depending upon the nature of the cohort.

And each and every one…is VALID…and MEANINGFUL…and so very, VERY ACTUAL.  You are HEARD.  You are COUNTED.  And you are so very, VERY THOUGHT of.

And I have many thoughts.

You see, I know about breathing…the scary part of breathing, that is…

My husband, Charlie, suffered with ALS for three years.

This disease, it takes every physical ability from you – your ability to talk, to eat, to move…until it takes your very breath.

On the cusp of his third year…his breathing took the worst hit.

At that point, he could still stand, still walk…still operate his right arm to some extent…but his diaphragm had started to give out.

On the day we went to the E.R., he could only keep breathing by standing and bending over, rocking back and forth to manually keep his diaphragm working just enough to move oxygen into his lungs and keep his body going.  Picture using your body to manually operate your lungs much like a blacksmith uses bellows to deliver oxygen to his fire.  But we knew it wouldn’t be enough.  He wouldn’t be able to sustain it for long.

He opted for emergency intervention and we went for the tracheostomy. 

When he came home, it was with a trache and on a vent.  He never got off the vent.

One of the many things I’ve taken note of, and completely identified with, during the several last weeks, as I’ve watched COVID-19 bring the entire world to a standstill, has been from my ALS tribe.  And the common theme about quarantine and safety practices, seems to be – we don’t really notice a difference.  We pretty much live like this on a DAILY basis.

And it’s TRUE.

The first rule of contact is – “Are you sick?  Have you been around anyone who is sick?  If so, no thank you, we bought at the office…take your sick and contagious self back home where you belong…we do NOT need your disease on top of our disease…”

And social distancing?  We call that circumstantial isolation.

If you are the caregiver of someone who is on a vent, or who cannot move…you cannot leave your house…or at least, the radius of a video baby monitor, unless someone else who has the knowledge and skill to operate a vent (or otherwise care for them) can come take your place so you can run errands.

And those people are few and far between.

So, online ordering becomes your friend.  Pajamas become the preferred outfit of the day.  And did I mention that your person can’t speak?  So, you start to talk to the animals…and answer for them, as well.

Maintaining human contact via the cold, sterile tools of technology?  We call that socializing.  That’s all we had.  That’s ALL anyone who is in the world of ALS has on a day to day basis.  Facebook will forever have my love and support because it was the primary gateway to human interaction that I had, that CHARLIE had, during the time we lived with ALS.

So, I’m sorry (NOT sorry) about your having to “social distance” yourself from life as you knew it.  If nothing else, it will hopefully raise your awareness about the many people who have been living life as if in a pandemic for YEARS, not just weeks.

Life changes.  And sometimes, it sucks.

Sometimes, it means that it relegates you to a time and place you never knew existed.

You might end up losing your job. 

You might end up losing your career path.

You might end up losing yourself.

It happens.

And it sucks.

And I’m sincerely sorry about that.  Truly, I am.  Because I know.  I’ve been there.  I’ve felt all that.  I’ve BEEN through all that.  And it’s hard, and scary, and oh my God, unbearable at times…

So, I’m sorry. My heart is aching for each and every one of you.

So this appeal goes out to those who are NOT going to be subjected to the financial tsunami that is headed our way.  And make no mistake about it, it is coming in HARD and QUICK.  There will be a lot more suffering and a lot more need.  A LOT.

So, I’m talking to YOU, the ones who are philanthropists…who are independently wealthy…who are waiting all this out with little worry, knowing you will be okay in the long run…

Can you help us? 

WILL you help us?

Will you do it NOW?

I’m asking those of you who are financially solvent, will you take a moment to re-examine your gifting strategies and see if you have the leeway to divert any financial support to those whose very lives DEPEND on continued support?  Can you restructure your giving, momentarily, to make sure that the people whose lives depend on the continued research and forward progress, will still be counted in a world turned upside down by an unprecedented event?

I am a teacher (of English AND Theatre) and I KNOW the importance the Arts AND Teaching plays in a time like this…it is EVIDENT, and NOTED, and APPRECIATED…and I HOPE…noted for future investitures by our federal and state governments, especially…

But this is different.

Non-profits are not driven by state and federal guidelines…although they have to abide by them.

They are dependent on the altruistic nature of their societies.

And I am BEGGING you, to keep that in mind.

I cannot begin to imagine the immensity of financial hardship that faces so many in the world right now.

People will lose jobs…they will lose businesses…they will lose career paths…they will lose loved ones…they will lose all sense of self and they will GRIEVE…

I know that feeling.  I DO.  I’ve been there.  I’ve lived through it and it is life shattering.  There is no other way to describe it. 

My heart breaks for ANYONE who is suffering through these times.  It is.

It is not easy to lose everything.  And, then, have to start over.

So, I am begging you, please, re-examine your giving practices.  If it is sustainable, divert all your extra funds in the immediacy to the organizations whose work helps people who will suffer tremendous losses if their important work cannot be supported.

I know I need to do the same. 

I need to examine my own spending practices and see where I spend needless dollars that could count for something much more significant.

I need to make sure that my every dollar matters.

How it would matter to Charlie.

ALS is a disease with no cure, no proven treatment and while it isn’t contagious, it IS one hundred percent fatal.  Diagnosis means death.  It’s only been a few precious years since the Ice Bucket Challenge brought attention to the suffering endured by people living with ALS.  But it brought more than just attention…for the very first time…it brought hope.  It brought hope in the form of funding for research by people DEDICATED to finding a cure and treatment for the disease.

The ALS Therapy Development Institute has made so much headway, gained so much ground, but their important research is in danger of being set back irreparably due to COVID-19’s interruption of the activities they depend on to fund their work.  These are funding activities that are contingent upon events that have traditionally involved large-scale group participation.  Until this health crisis is averted and new norms are in place, ALS TDI is in desperate need of our help.

What makes ALS TDI so special, is that it was created out of love. One hears the words “research, laboratory, scientists” and pictures a cold sterile environment where objective studies are conducted by detached personnel. That couldn’t be further from the truth. This biotech company was started by one brother in a race against time to save the life of another. Started by the Heywood family, in the basement of their home in Massachusetts, it grew into “the world’s foremost drug discovery lab focused solely on ALS.”

And that drive and determination that was fueled by personal relationship has remained a recurring theme throughout the existence of the organization. Many of the people who work at TDI, do so because they, too, have a vested emotional interest in what they do.

Meet Terri Handler, a Development Director at ALS TDI. She has been working for TDI since February 2011.

This is her story:

“Many years ago I had a brother who fought with every muscle to battle ALS. I will always hear his words that keep me dedicated to this mission. David said,  “Please make sure other families do not witness what my family has, but also remember I had a good life. It will end suddenly.”

I can remember the look on his face when his verbal voice failed and he struggled to tell his children and wife he loved them.

These words and these images repeat with each person with ALS I meet and for them, I fight and will secure the funding for ALS research. Together, we can end ALS…even when a pandemic tries to stop us.”

– Terri Handler, Development Director

Then there’s Ken Thompson, Director of Laboratory Operations. He’s been a fixture at TDI since almost the beginning, having started in 2001. Stephen Heywood was his best friend.

In this next segment, Ken sits with Dr. Fernando Vieira, the (now) Chief Scientific Officer at ALS TDI as they discuss their history with the organization, the heart of the mission, and their continued personal investment and connection to the work at hand.

You can learn more about Stephen Heywood and the inception of the ALS Therapy Development Institute by watching the film, So Much So Fast.

These people have dedicated their lives and their careers to working on finding a cure and viable treatments for people who are suffering with ALS. They do this because they care about what they do and they KNOW the people for whom they do the work. They continually, and consistently, invest themselves in the lives of the people they are committed to helping. They meet them, get to know them, become friends with them…

And they lose them. Time and time, again. But they keep coming back, every. day. to the lab. They keep fighting for them, their families, and their memories. They honor the memories by keeping the work ALIVE…by keeping the work GOING.

And now all their recent progress, all the strides, all the new therapies are at risk.

The reality is that our financial losses, at this critical time, could exponentially slow down potential treatments for thousands of people living with ALS today, and the generations of people with ALS still to come.

– Steve Perrin, P.h.D., CEO of ALS TDI

I beg you, don’t just sit idly by while your auto-deducts go toward things you don’t even remember to remark upon…

Please, send your extra ten dollars to a worthwhile cause that depends on every single dollar.

In the end, I had to make the decision to take away Charlie’s last breath.

It was not an easy thing to do and I struggle with that every single day. It’s why ALS TDI’s mission means so much to me…why it’s important to do everything I can to help find a way to end this disease. So, NO one ever has to watch someone they love fight for the breath that means they are one less day from dying too young.

Please, if you are able, give the gift of breath.  Please, donate to ALS TDI so that someone else can have a chance at living life as it’s meant to be lived…and not one lived under a death sentence with pandemic conditions.

Please, take a look at these testimonials and pleas down below from people who are living with ALS and who are fighting for their lives, every.single.day.

Breathing is PRICEless…but the research to find that breath of life is not.

It has a price tag. Please help fund it, so the people you see pictured below, don’t have to pay for it with their lives.

” ALS TDI has been a source of hope for us from the beginning. Now more than ever, we need to follow through on the concrete and achievable goals embodied by their mission. They have never given up on us, so we can’t give up on them…”

– Matt Bellina, diagnosed with ALS in 2014. (Pictured above are his two boys, JP and Kip.)

“ALS patients are well aware of “social distancing” and being “locked in”, before, during, and will still be after the coronavirus. We need to continue to fight ALS together! ”

– Pat Quinn, pictured here at ALS TDI’s 2019 White Coat Affair in Boston.

“If only all that was required to stop ALS was to stay home. If only millions of federal dollars were being pumped into ALS research and a cure was being fast-tracked by the FDA. But it’s not.”

– Andrea Lytle Peet, founder of Team Drea Foundation. Diagnosed with ALS in 2014.
( At the finish of ALS TDI’s 2017 Tri-State Trek in Greenwich, CT.)

” WE are the only ones who can save us and protect what we’ve built through ALS TDI. PLEASE give if you can.”

– Andrea Lytle Peet and her husband, Dave.

#NewNormALSz #LiveWithIntention #SaveTDI #EndALS