What’s On My Mind

This is what’s on my mind …

Though the sun is streaming into my office, casting wonderful shadows of blinds and shelves, te acups and a metal cow on my desk, my thoughts are in the realm of darker subjects.

You know, so much of life can be seen on a light spectrum. We have our moments that are brilliant, as though the light of the universe envelops us. We love those moments and cherish them.

There are also times when clouds block out the light or it is total darkness. There are days when we can go from the brilliant life of light, to the darkness of the unknown or dreaded.

These thoughts have come to me in the last couple of days as I reflected on a radio program I listened to while driving.

The program was on NPR. I like to listen to the programs where they interview authors. This author, I don’t recall her name, had written a book on patients who had ALS, Amyotrophic lateral sclerosis, commonly called Lou Gehrig’s disease.

She has written about other neurodegenerative diseases. Parkinson’s, which my Nick has, is a neurodegenerative disease.

A woman, a mother of a man who has ALS, was also interviewed.

I didn’t want to collapse while driving, or burst into tears, so instead, my stomach did the twist.

There are so many diseases that the human species can get. We can pretty much spin a wheel and where it will land, we don’t know. Will it be cancer, the dreaded “Big C” or will it land on heart disease or kidney failure where only dialysis or some other sort of cooties. Rarely, do we think of dying in a car accident or falling from a ladder or some other instant adios.

We know that people have written about Alzheimer’s as the long goodbye. The brain and memory get shot with that disease.

There are many diseases that don’t necessarily do the killing part, but they cause other organs to fail and the body to get weak and susceptible.

It is difficult to see light with any of these diseases.

The mother, whose son has a son who has ALS, was articulate, matter of fact, and tired.

They care for their son at home.

The young man decided that when the time came that he couldn’t breathe on his own, he wanted to be placed on a ventilator.

And so it was.

The young man’s family takes care of him, as he lives at home.

It is 24-7 care. Physically and emotionally exhausting care.

Home health care costs aren’t covered.

Listening to this, my mind twirled. It took me to places where light diminishes and each minute involves just hanging on. Not just the patient, but the caregiver’s too.

Just as we aren’t taught that we might have to tend and parent our parents as they age, most of us aren’t taught that we will have to tend to spouses, children, loved ones, with debilitating illnesses such as ALS, Alzheimer’s, Parkinson’s, etc.

That is not even thinking about babies who are born with chronic illnesses that take daily care and have wicked prognosis.

A doctor spoke about how he told people that they had ALS. Wouldn’t you hate to have to do that?

He said you have t make sure you have a lot of time, are not interrupted and that you had to be sure this was, indeed, what they were dealing with. Getting it wrong and taking people on this emotional journey, is not something they want to do.

It isn’t just the patient who, can be traumatized when such a diagnosis is given. The family and the potential primary caregiver can feel the earthquake, too.

Perhaps, this hit me hard because of my Nick and his Parkinson’s. Right now, we are still in the lucky range, although it is still rough. A man, one of the strongest I have known, has lost a lot of strength. His stamina is waning. His life, our life as it was, is very different. And it will continue to change.

Nick takes those changes with much grace. He accepts. We try to keep adjusting where the normal is. The new normal or next to normal.

He doesn’t feel well most of the time. But he tries to go on. It is pure joy when he has a day or a part of a day where he feels decent.

Yes, we are fortunate, but there is still that sense of sadness that accompanies this. It is aging, magnified, sped up and tangled.

When they spoke of how people with ALS still have their minds in this body that is taken over by aliens, I can’t even comprehend how that must feel, how that must be to live with or deal with.

This may seem like a depressing post, but that isn’t its intention. It is simply life. In many ways, I write it in gratitude. It is all good.

For us.

It is written more with empathy for those whose lives are affected by these human conditions.

The light shifts in each of our lives. We have sunrises and noontime sun and dusky light, nighttime and eclipses.

Maybe that is why I like nightlights. As long as I have that little bit of light, I can deal, I know that daylight will come, and we will soldier on.



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