December 2014

Reflections on My Insomnia

by Tim on December 12, 2014

As I write this, it is 3:30 AM. There’s no obvious reason for me to be awake. Everyone else is asleep and quiet. The only noises are some white noise and the cat purring, and now the soft clicking of this keyboard. As pain goes, I’m actually a bit better than average. A recent medical procedure helped some with my headaches. But yet, here I am, writing this.

I mostly got out of bed because I figured, what’s the point of staying there? I even thought about showering and starting the day really early. I’ll ‘wake up’ in three hours, shower, and get the kids ready for school. I’ll drive them the 20 minutes there, and then I’ll be off to my neuropsychiatry appointment, the one who sees whether two years of chronic pain is rotting my nervous system and driving me crazy.

So why am I, the former world champion of sleeping, awake? I can only guess.

I know I worry, somewhere between a lot and all the time. Between cancer, autism, concussions, and chronic migraines, we each have no small number of challenges in our house. We have a lot of medical debt. I haven’t been able to work enough to get paid in a long while. Week before last we had over ten total doctors’ appointments. This is getting to be a regular, weekly thing for us.

Maybe I’m so mentally and emotionally exhausted that I can’t sleep anymore. I can’t shut down. I can’t find that balanced state of sleep and rest because my body and mind are shot full of holes. Maybe my nervous system really is rotting, and maybe I am going no small amount of crazy.

I just keep trying to tell myself that I am human, I’m emotionally trying to do more than I am capable of sustaining, and that I need to acknowledge that I’m a finite and flawed creature with limits that can’t be exceeded. Our lives are like the speed of light. At least for now, even light has its speed limit.

We all think we can subject our bodies and minds to this intensity day in and day out and never pay for it. We are charging this stress just like monetary debt, except we have to rob one account to pay another just to keep the creditors at bay. That only buys us a little time before the house of cards collapses.

I go to bed at a normal hour. I try to meditate regularly. I don’t do anything that strenuous. I’ve eliminated a lot of outside responsibilities and stressors from my life. Together we’ve worked hard as a married couple and a family to improve our life together. I’ve made a number of positive, personal changes. But still, here I am, awake.

I am trying to notice the sensations of my body and mind as I write. I’m cold because it’s chilly outside and in. I’m hungry because I blew past dinner last night. I’m fidgety because I struggle to be remotely calm or still. I’m worrying about the significant challenges each of the kids are facing right now. I’m not particularly in the Christmas spirit. I know most of the time I would give a piece of my soul for a quiet house and some sleep, and I am pissed at myself that I can’t rest.

In the grand scheme of things, my pain, stress, and responsibilities are less bad than usual. It has been much worse over these past two years than it is right now. Our basic needs are being met; regardless of our debts we are staying afloat pretty well.

So what gives?

I’m going to hazard a guess, and I think it’s one that’s likely true for you, too.

Fear.

After being afraid of everything going on for so long, my body and mind know little else anymore other than the default state of fear. The process of fraying all the nerves takes some time, based on intensity, but once it happens, there you are.

I’m afraid of the future. I’m afraid of all the headache pain coming back even worse than before. I’m afraid of falling back into that terrible pit that I didn’t think I’d ever even begin to climb out of.

I’m afraid of all these challenges that threaten to implode our family. I’m afraid for our little one’s health as he fights cancer. I’m afraid that our J-Man will face so many challenges as he gets older that he will find it too hard to have a job, live somewhat independently, or find someone beyond us whom he loves who can love him back just as much. I’m afraid of so much more that I don’t even want to write down.

So, yeah, I’m afraid.

I take some solace that you and I are somewhere out in the middle of all this together. You have your own fears as I have mine. We each have our limits. We fight this, but even the speed of light has its limits. Light can still do amazing wonders within its own barriers, so perhaps there’s hope for us yet.

I take some solace that it’s worse to not be afraid. To lose fear is to lose your ability to care. You no longer wish to fight for a better life. Fear is a necessary emotion. I just wish it would let up some.

Today likely won’t be my day. That’s been a consistent trend for a while. Putting one foot in front of the other in the presence of fear, doubt, self-judgment, and the enormity of the challenges one faces is one of the bravest acts of all. So I’ll try to be brave as best I can and hope better days are ahead.

It’s easy to think that you are never going to get anywhere. Forward progress can feel glacial. You may think that little of what you do really matters. But it does. It all matters. Even if you are terrified, what you do matters, perhaps even more.

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I Wish I Knew What He Wanted

by Tim on December 10, 2014

We admit it. We get depressed during the holiday season about one thing in particular.

We have no idea what our J-Man wants, and there’s really no way to find out.

He’s still ‘minimally verbal’ at age 9, with approximately the functional verbal speech of a two-year-old. His communication via speech device is only a little better. Mostly he expresses some basic wants about food, drink, and a handful of activities, he will answer certain kinds of questions, and then the rest of the time he scripts.

He can’t tell us much at all about bodily sensations like pain and discomfort, and rarely can he identify his own emotions. Those are just too abstract for him. We are left to guess about those, too.

As he gets older, I feel more and more like he’s a deepening enigma. He seems more and more distant in many ways. He’s approaching the pre-teen years, and we all face many changes soon. I know in my heart that so much is going on inside him – the good, the difficult, the painful, the joyous – but it has so few ways of getting out. What I can figure out about him feels like it barely scratches the surface.

I don’t even have the remotest clue what he might want for Christmas. Not a clue. We guess each year. Some years, out of what we do get him, one – maybe two if we’re really lucky – he accepts and enjoys. We find a winner more or less by educated accident.

Is it really that big of a deal if he doesn’t want to participate in Christmas gifts? Not really. Christmas ultimately has little to do with presents anyway. It’s just for me a symbol for all the things we cannot understand within him yet.

I would love to share my Christmas memories with him, what our old tree ornaments mean to us and why, the special snacks and sweets we make only at Christmas. I would love to tell him stories of my own grandmother, how she loved Christmas, and how she made us all feel special. So many ornaments on our tree came from her house after she died, and decorating our tree is in no small part full of rich memory and grief of those days that exist within our shared family memories.

I would love to know what memories he has now. I would give anything to know what he loves. Is there some form of visual art or music that moves him? Is there something he wants to build, explore, or learn in-depth about because it interests him? Is there something where he’d think, “I love this. Come do this with me Daddy,” and we could share in that experience together?

I don’t wish to change him to do what I want. Let’s be clear about that. I do want to know what he wants in and with his life. I want to know what he dreams about. I want to see at least some of what he sees in the world.

But I can’t. At least not yet. I will still hold my faith that we will be able to share these and more together someday. Until then, I sit with him, I talk to him, I learn everything about him that I can. We think of every way we can give him the opportunities to discover what he loves and who he wants to be. And Christmas, particularly Advent, reminds me that this is really a season of waiting and hoping. That continues to be our path.

Instead we make educated guesses, and for now that will have to do.

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