This week I am at a writer’s workshop and had all intentions of going all gung-ho on writing my book, but something has me so unsettled that I had to break free from the formality of writing my manuscript in order to tell you about it. It’s really weighing heavy on my mind, and I have found out in the course of becoming an author — as long as I purge whatever is bothering me through the use of words (which means I *am* still writing) I can get back to my regularly-scheduled programming.

I came across this poem today and, in light of recent news, I wanted to share it.

Saving You

The darkness takes him over,
the sickness pulls him in;
his eyes—a blown out candle,
I wish to go with him.

Sometimes I see a flicker—
a light that shone from them;
I hold him to me tightly,
before he’s gone again.” 
― Lang Leav, Love & Misadventure

As sad as it is, isn’t it also so beautiful?

I am one of many people in this world who loves a veteran that is suffering from a traumatic brain injury and/or post traumatic stress. It changes them not only on cellular level, but on a deeper level that reaches into their soul. Some days we have good days and I get a glimpse of the man I met and married nearly 22 years ago. Other days I don’t recognize him at all. Some days he surprises me with words he’d long forgotten to speak. Other days he’s silent and lost in an abyss where words can never reach the places he needs them the most.

Right now I am going through a bit of a roller coaster. Dan has been going through some health challenges that have put him into a place where he is hard to reach. I received news from his doctor night before last about very alarming results in his recent lab work. While this isn’t new news, it’s news that was worse than the labs before it, and the labs before that. We knew he was struggling, but modern science has proven just how hard he’s struggling…

Without revealing all that is wrong and violating his privacy, I can summarize it in one sentence:

I feel like I am watching him die slowly

For the sake of sounding dramatic (which is definitely not my style) – this is exactly how I feel.

I’ve written in the past about Dan’s tendency to over-react (and dramatics are definitely not HIS style, either) at the mere thought of losing me, or his fear of what he would do if something terrible ever happened to me.

I get it. I really do. What would happen to him if something happened to me? To help with addressing those ‘what if’s’ in life, I took a step back from the chaos to put my attention where it is needed the most.

But I really hadn’t felt the fear of losing him …until now. THAT is why I am writing about it today. If I don’t, I feel like I may crack and shatter into a million pieces.

The story behind this story

I didn’t talk about it back when it happened, but I had a very pivotal moment last month. It solidified my realization of Dan’s true fears. On the surface it would be so insignificant — we’ve seen many presidents do it on TV, yet they drive on and continue running our country — but to me it was an imprint on my mind that came back to haunt me.

A visual I will never forget…

I was stepping off a small airplane onto the tarmac, and in a moment of not paying better attention, my foot slipped and I missed the last couple of steps. It was like you see in the movies…. s-l-o-wwwww  m-o-t-i-o-n. As I contorted my body to land as gracefully as I could, I connected my eyes to Dan’s face as he reached for me to catch me. He wasn’t fast enough. As each of my body parts connected to the cement beneath me, his face contorted into the most horrific look of fear I have EVER seen on his face.

He was truly horrified.

It was surreal in a way. For a moment I wondered if that was the same face he made while in combat and witnessing the things that changed him forever.

I can’t explain how his face shifted and how his eyes screamed in horror, but what I can tell you is this:

I was certain that what went through his mind was his realization that he couldn’t protect me. He couldn’t save me. He was watching the very person he relies on for every element of his life slipping away to a place where bad things happen.

I got up as gracefully as a middle-aged woman could and shrugged it off. I spent more time comforting him than he was trying to do for me.

When I got the news from his doctor, everything I knew about my world changed

As I reviewed the results of Dan’s labs and let the historical data set in, I think my face contorted in horror much like his did last month when I landed in a pile at the bottom of the airplane steps.

It became clear to me: I am not afraid to die. I am afraid if HE died.

So many questions and conversations ran through my mind…

What more could I have done to prevent this? I would never forgive myself if this is something preventable. Even if I am doing all I know how to do, what if I could have done more?

Then it sunk in…. This is a terminal illness when I really get down to it. Morbid? Yes. But it’s also our new reality.

Worst yet in the “Hey, let’s blame ourselves” department:

What if everything I have been doing I do to care for him is exactly what is killing him? What if the food he eats and the medications I make sure he takes are the reason why he’s going downhill?

And the biggest question of all…

What should I do?

The answer is, I really don’t know. But what I do know is this:

There is a difficult dynamic that goes on when a spouse becomes a caregiver. The roles change from lover to mother. I become the nag when I have to get on him about better choices in his health. For all intents and purposes (and in his defense) he’s not deliberately making bad choices. He just needs help with making better choices.

And that’s where the conflict sets in. I am guaranteed to step into the role of being his nagging mother.

I’d much rather work on being his lover, but that will probably have to wait for awhile.

Guys like my husband do NOT do well with change. Everything in their world is based on predictability, routines and habits.

In order to help him, I have to turn his whole world upside down. There will be no predictability. All his routines we worked so hard to create will now change. All his habits, the very thing that keeps him grounded, will also need to change. There will be significant consequences.

So I have to learn to let that go. It is what it is, so I might as well deal with it.

Backing up even further in this issue, let’s go to the things I can control and help him with…what he puts in his body.

Even if I can change his entire diet (which was already verified by multiple professionals that I was doing everything right) and find even better options for him to eat, we simply cannot afford to buy things like organic foods or lots of fresh fruits and vegetables.

This brings me back to the guilt of not starting a garden sooner. I was too busy being busy, and I could really use a garden right now!

Again, it is what it is. I have to learn to let go of that and deal with it.

If we take him off any of the medications he’s currently on, there will be consequences. He’s FINALLY stable enough with his PTSD medications that he hasn’t had outbursts in quite awhile. I can deal with the isolation and anxiety, but controlling the outbursts were such a big win for him. If we change his medications in any way, something we’ve worked SO hard to get leveled over the years, we are back to square one. We are back to him having rages, outbursts, broken furniture and broken hearts.

So, now what do I do?

Am I realllly ready to let it go and deal with it?

Um. No.

But it’s all I’ve got left to do.

Dan is doing what I expected he will do. He’s in denial. This mimics the five stages of grief. He’s denying there is any problem because it’s so much easier to ignore it than to accept it.

The fifth and final stage is acceptance. I want to get to that place and help him get to that place too.

How can I, in the face of health issues that are life-shortening or life-threatening, skip to the acceptance stage? Or, better yet… prevent all of these stages from being needed and at least keep them at bay?

Our society is conditioned to assume we all plod along at a high level of function until we are suddenly struck down by a catastrophic event or illness. When that happens, everything will be over nice-and-clean. But that catastrophic event was a near-miss and he beat all odds. We spent years reaching his fullest potential in his recovery after his combat wounds.

It’s really hard for me to swallow that bitter pill that our best days very well may be behind us, and now we are entering a prolonged decline.

And sometimes the cure is often worse than the disease.

What is the difference between saving a life and prolonging dying?

Well, the truth in all of this depressing news and spiraled thinking is this:

I haven’t given up yet. He might, as he does from time to time, but I am going to keep doing what I’ve always done and never, ever, ever, ever, ever give up.

I will find a way.

I don’t want our children to worry more than their young lives have had to deal with already. They will need me more than ever to give that stability and peace of mind that got them through to this point in our lives.

I want them to know that I am going to do everything in my power to keep their father in their lives for as long as God will give him. Until then, there is certainly one thing I CAN do…

I have chosen to improve the life we have

This may come in the form of putting things at the top of my list of things to do that were previously buried a lot further down. I am going to make and preserve memories. I am going to take what we have left together and make it the best damn life I know how to create. I can’t let my life be driven by all the what-if’s we’ve had to process. Instead, I am going to ask myself a different kind of ‘what if” and do it like this:

What if I shut off the phone for a month and let the world disappear while I took my family to places that made us happy?

What if I did things that are sure to make him happy, thus making all of us happy, and soaked it up instead of rushing to the next thing?

What if we let go of the past and started focusing on the future, even if the future isn’t guaranteed?

What if everything I do really is good enough, and I go on to release myself of the emotional baggage …and accept the fact I can’t save him no matter how hard I try?

What if I put that energy into something more meaningful instead and just lived our damn life already?

What if I didn’t look at this as the longest goodbye and just embraced it as our new season of finally getting around to living?

Yeah, I like that so much better.

I woke up this morning and out of nowhere Dan started singing “You are my Sunshine” to me. I can’t tell you how much I miss hearing his incredible voice breaking out into a song. That was one of the reasons I feel in love with him. He would sing to me, for me, and sometimes even about me. It helps that he’s also an incredibly talented singer, though he’ll argue with you if you tell him so.

I joined him in the melody, and before you knew it, we were singing it together.

I held onto that image in my head and pushed all the other images aside.

This is going to take a lot of practice. You see, Dan is not the only one that relies on predictability, routines and habits. I have to upend my entire world too.

I intend to do everything I can. I refuse to see it as a glimpse of the man I married that will eventually flicker and go out like a candle in the wind. I see him singing to me today as one of the many memories I plan to preserve forever and ever. Even if it’s the last time he does it, all that matters is that he did it that one last time.

We never know if our moments are a ‘one last time’, so let’s spend all of them as if they are.

And like the poem at the beginning of my post said:

I am going to hold him tightly, before he’s gone again.