How to say goodbye again…

I wonder how they do it?

I wonder how doctors can look people in the eye, and tell them that they are going to die…

The doctor sits down and explains to the patient that they have ALS….and then what?

I know in the ALS community, there are teams of doctors and specialists and therapists who rotate into each room, greeting the newly diagnosed patient and their family member. Every doctor, specialist and therapist have a small window of time to discuss and answer questions, as well as take various measurements with various tools and devices.

These are referred to as an ALS Clinic.

These people are sent into the room to determine how much a patient has progressed.

These clinics are all over the country, the world in fact. And each one does exactly the same thing.

They diagnose…and then they chart the progression of the deadly disease known as Amyotrophic Lateral Sclerosis.

How do they cope with this loss repeatedly?

They meet a family, they get to know them, and they watch, helplessly from the side lines.

How do they find the strength to keep watching?

And they do this over and over with each patient they see.  They may not know when, but they know, just like a freight train that is headed straight towards them, and there is no way to jump out of the way, that death is headed for each of these patients.

Today, Matthew and I learned that we have lost another friend.

And just like that, he is gone.

I can picture his face perfectly. His eyes, and how they twinkled. His smile, and the way he grinned like a little boy with such a mischievous look in them.  I knew he loved his family. I knew he was a proud man, with an iron will and a stubborn streak t least a mile long.

I knew that he had progressed considerably since the last time I saw him.

I hadn’t seen him in months, but I knew.

Of course, I knew.

It was clear that he was struggling when I had seen him last. His shoulders were rising with each breath.  He hated the chair he was sitting in.  He visibly looked uncomfortable.  He hated being sick…

And from the short time I knew him, it was clear he was stubborn and would handle this disease his way.  I could relate to the frustration his wife felt about this.  It is hard to let someone else take the reins of their own life and yet , as the caregiver, be somewhat responsible for their health and welfare.

Matthew drinks Coke.  A lot of Coke..

He still chews tobacco…although now he has moved onto Copenhagen pouches to avoid the choking hazard of the tobacco grains going down the wrong way and causing pneumonia. But he still chews…

He eats too much fast food, and junk food, and he doesn’t care because he knows one day soon, there is a possibility that he will not be able to eat. So, my stubborn husband does as much as he wants to do, and I let him.

The man who passed was stubborn too…

He hated anything that made him weak, and he especially hated all the machines he relied on, and the medicines…and how weak he was becoming.

I am taking a huge liberty writing this, as I hadn’t gone over to visit him in so long.

I will forever feel sorry about that, and yet I hope they understood.

Matthew and I are on our own path of this destructive train wreck waiting to happen.  I know it’s coming, and so does he. Yet, we are still able to find happy moments and to experience joy and laughter. I need to keep my own happy for as long as possible. I am grasping with everything I have on some days…

The years keep going by, and the people we meet have come into our lives, and many have passed. Sometimes suddenly, and others, not so surprisingly.

And I am detaching from it all…

This doesn’t feel intentional, it’s a sort of survival mechanism for my heart.

I meet these families, and I fall in love with them.  And then I watch powerlessly as they struggle to find their new normal, and I am helpless to stop what is happening to them. And I become a bit angrier at each loss.

There are more people who have been diagnosed in our area recently.

Some have reached out to me, and this time, my wall is built.  I am a little less willing to rush into their worlds and learn all about them.  I am a little less willing to fall in love with their families, and then witness their anguish.  I hide behind the walls of our foundation. I stick to the facts.  I offer advice, but I pause before opening myself more.

Matthew is much the same.

This afternoon, he hid behind his screen.  He hid behind whatever would take his mind off what is happening.

The freight train is coming…

We can hear it.

We can’t see it yet. We still have time.  But the dread of what is coming is always there. It never quite goes away…It is dark and heavy, and we can do nothing but accept the path that we are on, and the journey we have been led to walk.

I wish his family peace.

I hope they find comfort in their memories of their time together…

And I hope they understand why I pulled away. Not because I wanted to, but because I needed to.

I am not always as strong as I like to think I am.

We are all cowards from time to time…

Goodbye friend☹