Today I came home early…

Today I came home early
He’s here, but he doesn’t come downstairs

That’s usual these days

He doesn’t call to me either
Also usual

The dog’s leash is hanging on the door knob, so I know he’s in the house

Then I see the dog
She’s asleep on the floor

I don’t know what to expect as I walk lightly
Up the stairs

Meditation music whispers through his door
which is shut
like usual

I open the door slowly
And he is there
On the floor
Flat on his back
Shirtless, eyes closed, rib cage defined, stomach sunk in

He doesn’t know I’m there
And I watch him for a moment
He is serene

Peaceful

What’s going through his mind?
Should I let him know I’m here?
Clear my throat?
Back up and come in again?

No

I close the door, nearly all the way

He’s still breathing.
That’s enough.

In the end

It will come down to this

We were the best of friends

You were there for me

I was there for you

Little things like amnesia

won’t matter

The others weed themselves out like that

They weren’t there

They didn’t stick it out

But you, my friend

you followed me around

you did your part

you held me through the waves of my breaking heart

so that now when I face the deep chasm of the abyss

the end of dreams and hope

a life closing in

I am here for you

Even though I am afraid

of this dark thing

this rage against the dying of the light

I will always be your friend

And the path is clear

ignore the worst

remember the best

It’s easy to know what to do

I will sit with you

and remind myself

I know enough

to make you smile.

When you look into his eyes

And he no longer sees you

But he needs you to make him breakfast

When you look into his eyes and he isn’t the only one

Who doesn’t remember how it used to be

When you look for his eyes and they are downcast

And filled with tears

And then hate because you forgot to order his medicine

When you reach into your mouth with both hands

To hold your tongue

This is when you are tested

What did you know of your vows when you made them?

Did you guess that his body would still be there

But his mind would fly away?

For better or for worse

Did anyone ever explain what worse could be?

Perhaps he would cheat on you—that would be worse

But you never imagined the loneliness of being next to someone who isn’t there

For richer or for poorer

Or that nursing care would gobble up your life’s work

and savings

in mere months

You thought dementia was about forgetting

Not anger

Not violence

Not shame

In good times and in bad

Or thought you’d give up your dreams as soon as you could realize them

For all the days of your life

And you remember that you chose him

above all others

because he was so kind.

A tribute to zombie food

In a rare occurrence of whimsy at work, it was condoned for a short time that if we wanted to connect in a meaningful way to people, we would make comparisons to zombies. Needless to say, this didn’t catch on or last very long, but the idea sticks with me today as I think about brains.

Brains. We all have them. Not many of us consider ourselves smart enough to talk about them, but I think that by virtue of having one, we are entitled to our opinions.

TBI. TBI is a term I never heard before last summer. It stands for traumatic brain injury. And here all this time, I should have been much more interested in brains and how they work, but now that I know someone who has TBI, someone very close to me, the brain, and all of its magical workings, has become very important indeed.

I suppose in some sense, I am now a caregiver. I never imagined this role for myself and I’m not sure I naturally take to it, but here I am and I’ve got to make the best of it.

Sure, I could run. I could hop on a plane and scram, but my rather intact conscience would never let me escape. So there is nothing to do but face it “head on.”

What does TBI mean for my life? It means a gaping distance from my best friend. It means I understand the arguments we’ve had for years—now that I know he’s had more than 10 concussions. It means I have to be calmer, stronger, and more responsible than I’ve ever been before. It means anger and frustration for both of us. It means I have to battle my own resentments.

The fact is, people have been getting hit over the head for a long long time. And into each life some rain must fall. And every cloud has a silver lining. My silver lining is that maybe I can turn my own life around. Maybe with the knowledge I am gaining, I can take steps to improve my own chances of retaining cognitive functioning into old age. Maybe, just maybe, I can find the answers to heal my husband.

It’s been 7 months since his fall. And I know from my research that significant recovery should take a year or more. And the last neurologist gave him a horrible diagnosis, one that sent us both reeling, one that tests my faith in my own intellect. Do I dare to disbelieve?

On top of all of this, my husband has realized that he is mortal. He has realized in a very concrete way that he will die, actually die, some day. And now the midlife crisis begins.

There is an incongruence with the consideration of suicide and at the same time raging against the fact that one will eventually die. But brain injury is not logical.

In hindsight, I could have done better to log his progress. Where is he in his recovery? Language has come back. The stuttering has receded. Critical thinking is better. Decision making is still hard. I have to remember not to give him choices. This seems wrong, but the confusion and distress for him are too great. It’s better to offer him one thing that he’ll probably like. Driving is still out of the question, but going into public places, such as the grocery store, has gotten better. Household chores are still all mine. I would prefer to be the chief worrier in charge, but he worries a lot. I’m afraid for him, afraid that feeling depressed and worrying will become habitual, will become easier than feeling good and happy.

Staying on the diet is critically important and yet somehow hard to remember and enforce. More room for improvement. Ketosis is very important and needs to be maintained. Also a term I didn’t know before this started. The brain does better when it burns fat and not sugar. A ketogenic diet is one in which the body gets its fuel from fat rather than sugar.

And what about his heart?

From narcsisstic neurologists to battling nutrionists, this is the world of post TBI. A man’s life is on the line and yet we don’t know the answers.

You get hurt and everyone holds out their palms. The main thing they want from you is money—lots and lots of money. They prey upon your ignorance and your fear. They build their mansions from this money.

But this is the age of the Internet. Oh, blessed Internet, with information at the end of a thoughtful search.

Long live the socialism of knowledge.

Afternoon photos

My husband, still brain injured, is going through photos from our trip this summer. He is picking out all the unflattering ones of me, of which, sadly, there are a plenty. He loves these photos, with me my face squinched up in pain, sunburned, eyes in slits, grimacing, cold. He sits and laughs at them and calls to me: hey, you gotta see this!

I wonder, is this what love is? To somehow see something appealing in something, well, not?

I remind him that beautiful women can’t take photos like that.

He doesn’t say anything, but keeps sorting, laughing, and saving.

It’s hard these days. I don’t want a new normal. Sometimes I’m afraid that’s what we’re facing—as I cling to the past. Time tramples over us, and I think, if only I could go to Scotland and see some castles. Maybe I’d come back with a nice accent instead of a tan.

 

 

If I was going to start a movement…

Well, there are tons of things I’d like to set right, but today, tonight, it’s the whole of Western medicine. If everyone who reads this could consider their last doctor’s experience and then if they felt as wronged as I do, simply write one letter stating what happened and how/why you feel ripped off, and make three copies of it.

The first copy should be sent to your doctor. The second copy should be sent to your congressman. The third copy should be sent to your local news outlet.

I won’t tell you what to say. All of our stories are different. Some common threads though are these:

  • We pay too much for the service we get.
  • Doctors are often unprepared and insensitive.
  • They don’t spend enough time with us.
  • They don’t hear us out.
  • They judge us based on our profession.
  • They don’t have good listening skills.
  • They aren’t empathetic.
  • They are pharmaceutical drug pushers.
  • They apply band-aid treatments instead of getting to root cause.
  • They insult our intelligence.
  • They insult us in other ways.
  • They forget that we are in charge of our health.
  • They forget that we are hiring them, not the other way around.
  • Often they aren’t knowledgeable of natural treatments.
  • They are rude and interrupt us when we are trying to speak.
  • When prescribing drugs, they don’t explain the potential side effects.
  • They are not healers.

This is what’s wrong with health care in the United States.  The problem isn’t that everyone needs insurance. The problem is that we have given up our power and have handed over our wallets. We have stopped thinking critically when it comes to our own health.

But things have shifted in the last 20 years. Today we have the Internet. Today we have knowledge at our fingertips like never before. WE could change this. WE are the ones who pay.

If you or anyone you know has had any of these experiences, write a letter, make three copies, affix stamps, and send.