In sheep's clothing

I wander in the crowd. Slowly, silently, blending in with the throng of youth. The music rages, stage lights flash. The audience, the pit, writhes. Swaying, pumping fists, banging heads. The air is humid with the smell of sweat, cologne, alcohol and the oh-so-distinctive angst of the young and innocent (or perhaps not-so-innocent). I breathe in the escape, the suspension of time, as the crowd loses itself and lives in the moment. And reality waits patiently outside. I am the wolf. I am reality, infiltrating the mirage of immortality. I am a tragedy, a disease, an accident, waiting to strike at those who believe themselves invulnerable.

No, this wasn't another melodramatic dream of mine. I attended a recent concert at the Quest Club in Minneapolis, with a thousand teens and twenty-somethings, perhaps a few relative old farts like my friends and I. And for the record, no I am not one of those guys who shouts 'Freebird!' in between every song.

I've been to hundreds of similar shows since my teens, a handful since my diagnosis. But this last one was different. I felt out of place, as if I no longer belonged. And not just because I was one of the 10 oldest people in the building. I simply couldn't get over the notion that I was likely the only person there with a fatal illness, almost certainly the only one with ALS.

This is what I do sometimes to add some extra flavor and drama to my life, as if that were necessary. A bit of it is just overthinking, as I'm prone to do. But I remember the previous shows I'd been to, as a healthy young lad, where it seemed as if that moment was all that mattered, and any future hardships were far away. I am a different person now. Older, certainly. Perhaps wiser. But I will never be quite able to see the world as I did back then. I miss it sometimes, the feeling that everything will be all right.

I enjoyed the show immensely. I stood for 2 hours, something I'm not able to do easily anymore, and took in all I could, trying to appreciate the fact that I was really there, despite my illness. And I reveled a bit in the secret I held, that here I was, fooling these people into thinking I was just some old dude at a heavy metal show. It felt wonderful. Perhaps I'm a good actor. I had somebody ask me recently "So, um, what's actually wrong with you again?"

For now, I can pass for "normal" most of the time, in large part because people don't pay close attention, which is fine with me. If I don't have a cane, or a wheelchair, or slurred speech, I must be doing well, right? For the most part I am, but I still feel different. Need to get over myself I suppose. Just do my thing while I can and not worry about what others think. Easier said than done.

But hey, Halloween is approaching, and make-believe is expected. So I intend to have a little fun and dress up as a healthy person this year, while I can still pull it off.

Just a dream?

Music is playing. An organ I think. Or maybe a few strings. I'm standing in the back, amongst a throng of activity, flowers are everywhere. The procession begins. I start to move forward, following a man and a woman, as they walk down the aisle. The audience stands and turns toward them, in anticipation, cameras at the ready, flashes go off left and right. I see many familiar faces, family and friends. Some of them have tears running down their cheeks.

There is a young man waiting up ahead, looking excited, with just a touch of nervousness on his brow. I see him smile as the man and woman approach the altar. The woman turns, smiling, with a tear and a slight sadness in her eyes. She is beautiful. She is my daughter. And she is radiant. She turns to the man beside her, who gives her a kiss on the cheek, and a warm embrace. At first I see his smile and I think the man is me, her father, giving his lovely daughter away at her wedding.

But the man is not me. It is the face of a complete stranger.

I panic. I am overwhelmed. I look around, suddenly realizing that even though I stand in the middle of the aisle, no one has noticed me. Frantically, I scan the crowd. Surely I must be here! At my own daughter's wedding! My vision starts to blur.

And then I see it. A picture frame sitting on a table at the base of the altar. A picture of me, sitting in a wheelchair, smiling. It is many years from now and I am not at my daughter's wedding and I am not the one to escort my daughter down the aisle and the man who is standing there must be my wife's new husband and I can't believe what I am seeing and in fact I am no longer alive. I start to scream.

I wake up. I am shaking and covered in sweat.

I lie awake for hours, realizing it was just a dream. Just a dream of some imagined future, one possible future among thousands, my brain getting the best of me in the middle of the night. Surely it was just a dream I tell myself. Over and over. Just a dream. Just a dream...

When it rains it pours

Speaking of bad weather, our basement flooded the other night when the skies dumped more than 5 inches of rain overnight. Perhaps flood is too strong of a word. It's not like we had furniture floating around. And there was certainly no need to build an ark. But it was a royal pain in the behind nonetheless, and further proof that just because you might already have your hands full, you shouldn't be surprised to have another curve ball thrown your way.

Indeed, this week was already feeling pretty demanding. Kirsten had just developed a fever, Eva suddenly decided to get up 2 or 3 times more often during the night, we had a 6-month checkup to arrange for (i.e. more shots with big needles), and we had to prepare, as much emotionally as anything, for Eva to start daycare since Kirsten is going back to work this week (oh, and did I mention I have ALS?). The daycare/back to work transition has been weighing heavily on both of us for a few weeks now, but at least we could plan ahead for that. And most of these things are just part of being a parent. You come to expect the hurdles and take them as they come I suppose.

The real kicker however was discovering that the exhaust vent from our furnace had a large hole it. The exhaust vent gets rid of the carbon monoxide produced when the furnace is running. If we hadn't found that hole, the deadly gas would be pumped directly into our basement. I don't need to tell most of you what might have happened next. We were horrified. Fortunately we hadn't started heating the house for the fall season yet.

To top things off, our water heater uses the same vent. A furnace guy came to check things out and shut everything off, saying it was too dangerous since our chimney was somehow blocked. We now have no heat and no hot water until it can be fixed, which is looking like sometime late next week at the earliest. Oh the fun of home ownership!

But you know what? If we hadn't had all that rain this week, and if my father-in-law hadn't been milling around, helping clean up the water in our basement, and taken a look behind our furnace, we might never have discovered that hole before it was too late.

Some would call it coincidence. Some would call it divine intervention. For myself, I'm not really sure. I like to think it's the latter. But I can say this for certain: despite all that we've been going through recently, this is one time when I'm really, really, really glad it poured.