Archive for the ‘disease’ Category
There is little between me and the sunshine but for paned glass and a fly buzzing loudly. The door is open and the sweet sound of birds singing spins forever in the foyer with the songs of Hoagy Carmichael and a piano gently swinging. It is spring in a melody and with it the promise of warmth upon skin grown cold from too much life and the constant living of it.
There will be hardships ahead and the wakes that we are leaving. The sun will shine, the fly will buzz, and Dickinson will always be there dying. At what point do we note it, and when do we walk on by? Will the warmth find me here, stuck beneath a doorway?
There are stages to everything, and all the world knows it—the linger of grief, a book not selling, a house on the mend, and a body far from mending. We vary in each and we bend to accommodate the other. It is as formal as a ball and as loose as a grasp on anything. Yet the seasons move forward, and they flaunt their wares like trinkets in the marketplace. I am looking out the window at something bright and shining, and I am fumbling for my wallet.
There was a refrain of muted horn and distant humming blowing softly through the shadows. It caught me in spirals both coming and going, and many nights I floated there upon wind and breath not sure if I was flying or falling, or whether it ever really mattered. And yet we are surviving, despite the fact that I have accepted the promise of fear like so many pending turns upon a dance card. I have never known more reasons for the worry, but it is spring, and I cannot get past the possibilities and the guilt of being happy. Perhaps tomorrow the door will open slightly wider, and the world a little more so.
They say it is a rare disease, but it feels more like a common condition, as in my plans are in constant flux depending on the condition thereof. It has to do with my stomach and the deterioration of the muscles in my esophagus. It has to do with coughing and choking, and going to bed each night convinced that it will be the very last time I ever do so.
I cannot sleep, and when I do I wake up in sudden panics, covered in the remains of the day and a gasp for breath like so many fish out of water. My wife makes me sleep in the guest room. I am exhausted.
It is not life-threatening, but it is life-restrictive. I cannot keep most meals down and I am in a constant tango with dehydration. Every ounce out I put two back in, and then we dip. Then we dance.
The past few months have been spent in various layers of mourning—one death after another, paired by book sales that should be better, a new job built heavy on promise, my only current source of income repackaged as “an exciting new opportunity” that no longer provides said income, sporadic fitness training that my body can’t handle, a home gutted of wall and floor thanks to water damage, and the tubes, the doctors, the procedures.
I have had my insides stretched by balloons and pumped full of Botox. I have had my insides land quickly upon my lap while sitting on the highway with no shoulders there to speak of.
Life of late has been one punch in the gut after another against a gut that punches back. I do not know if it makes me stronger, but it makes me think that I would like to be. It makes me appreciate the strength I feel around me.
I am fully aware that this is not the most adversity that one can face, in fact, it pales in comparison, but it is my adversity, and I am doing my best to own it.
I am doing my best to keep it down.
My boys know things about loss and love. Over the last four years we have lost my grandparents, my stepmother, Tricia’s dad, and my mom—the last two in just the past few months. In the time between we have lost three cats and a dog, all of which were years older than the children—all of which they had always known. The boys have experienced sadness in quantity and quality, something that many of us don’t need face until we are somewhat older, and now, through experiences I rather they never had, they know the things that I have mentioned. And they know so much more.
Atticus came home from school yesterday to say that his teacher’s father had died over the weekend, and that she had taken the day off.
“Of course,” I said. “I am sorry to hear that.”
I am still taking days off.
“The substitute teacher said we should write her a note,” he added. “We should write whatever we want.”
And then, armed with pencil and understanding, he disappeared into the kitchen to offer his condolences. This is what he wrote:
Heat, as an extreme, exists only in a relative sense. It is the hottest thing they have ever known and therefore it is the hottest thing that anyone has ever known. I tell them that it is not, that my coffee is actually hotter, but that does not soothe them, it only makes them question my sanity as they slowly dare a second sip of their lukewarm chocolate.
My back hurts. I have been carrying too much for too long. For six weeks I have been living as a single father—a single work-at-home-dad. It has been incredibly hard and surprisingly easy. I am better for it and I am tired and I am badly beaten.
My work has suffered. My 70 hour work week has been cut to less than forty—compiled from a series of minutes torn apart from neglected deadlines, tucked between goodnight kisses and the taste of warm whiskey across my lips. The clock moves slow and forward.
Chores once shared have become mine alone. All nights are long and lonely. All mornings are early and full of songs and frustration.
I do not believe that I have achieved anything worthy of praise or pity, only reflection. Others face obstacles far greater than mine on a daily basis. They make the most. They do their best. They are stronger than I ever thought I was, and when I sip from my glass the toast is to them.
But this is not their life, it is mine, and while I was prepared and up to the challenge, it was unexpected in both timing and time. From the frying pan to the fire is not a lateral move. The heat is extreme, and it is all relative.
Tomorrow my wife comes home after six weeks sitting at the bedside of her ailing father. Six weeks of tears and whispers and shouts in the night. Six weeks of walking in the shoes of a girl much smaller.
Bedside seats are lessons in love and fear, and the art of turning fond the old memories that weren’t. That is a chapter not yet closed. Those wounds are still open. He will still have a beside in need of sitting, and she will carry her thoughts accordingly. Her back will hurt.
They do not expect her. They have grown accustomed to the missing of their mother. Six weeks is a long time gone, and a father doing the best he can is still just one kiss goodnight no matter how much laughter fills the day or how much work is left to the forgotten.
Tomorrow will seem but another day to them, the routine of living with some parts missing. They will be safe and loved and slightly lost. She will be on a plane six weeks delayed and her dreams will be of little boy kisses grown wet with salt and the slightest linger of lukewarm chocolate.
The title of this post is a quote from Victor Hugo.
It’s Movember, and you know what that means, it’s that time of year when a man’s heart turns to his prostate, testicles, and mental health. And so should you!
This year the boys and I are all growing moustaches to raise awareness and donations for Movember—a campaign that has shown incredible progress toward finding cures and saving the men in our lives. A single dollar donation might be the one that saves your father, husband, brother, son, boyfriend, cousin, neighbor, uncle, grandfather, football hero, boy band member, grocer, soldier, teacher, firefighter, hairstylist, actor, blogger, so forth and so on. Or it might save you.
The bottom line is our top lip, and you can help save every single man you have ever met. There are worse ways to spend a buck.