Chapter 8; To be a man, a husband, a father, in the dark.
I am lying on a beach, in the sun. My skin, chilled to the bone only a few moments ago, now basks in the heat as it soaks into my body. My bones respond and begin to feel light again. The heat penetrates so thoroughly, so efficiently. I can feel heat; heat to the point where I feel wet from perspiration. But the heat remains a comfort the likes of which I haven't felt in so long. On my stomach and chest, I feel the small hills and valleys of footprints from those who walked in the sand where I presently lie. The sand is hot too.
There's a man swimming in the ocean, I hear him calling for a woman. He should swim back in to shore, I think to myself. The current is taking him too far out. Where is the woman he's calling to? Someone should tell him to swim back.
The heat cradles me and I turn onto my back allowing the sun to penetrate my face. Even my eyes feel light and worshiped by the sun. I raise my arms and stretch my legs. I groan from the comfort this act brings. The heat feels different now, like it's been centered. I don't feel it on my face anymore. I miss that heat, but where the heat is now seems nice too.
I turn my head and look for the man again. He's in trouble, he needs help. I look for the woman that is supposed to be there, but she is just watching, crying. Why is she crying and not helping? The woman waves to the man five times, and then she blows a kiss. She turns and walks toward me, but I can't look upon her face.
I turn my head away and go back to feeling the heat. The warmth has become focused around my cock. But the rest of my body remembers the heat that just a moment ago gave lightness and energy. The heat that comforts my skin and my bones has made me hard as it comforts my cock.
It feels so good I want to remove my swim trunks, to allow the heat free passage along my whole body. I reach down to push them off but my arms are now encased in lead. An invisible lead, I can't see it and I can't feel it, but I know it's there. I can't move my arms! I cry out as I begin to panic. I must move my arms, I must rid myself of the invisible lead! The sounds that should be coming from me as I cry out are absent. Have I gone deaf; unable hear my own voice? Where is my sound? I try to turn my head and search for the woman but my head won't move now. I struggle and struggle to make a sound, to make a move, something is terribly wrong.
"Honey...? Jack....? It's all right. Wake up Jack you're all right." Tina's voice appeared in my groggy brain and I startled awake; relieved to have heard my voice through the coughing and spluttering of a fading nightmare. She rubbed my chest and lifted my hand to her face.
"Another one eh? Did I wake you?" I rubbed my hand along her cheek down to her chin. These nightmares were coming three to a night. I couldn't remember the last time either of us slept through the night or even slept longer than four hours at a stretch. I had tried to get Tina to sleep in another room, or allow me to do so, but she refused and threatened murder if I brought it up again.
"No, you didn't wake me at all...I was, um. Oh sheeshe I'm so... I was kissing you awake. I was trying to, um, wake you. But I guess I wasn't ... Oh never mind." She jumped out of bed and headed for the bathroom while she wrapped her satin robe around her hips.
'What the hell was that all about?' I thought as I slowly pulled myself into a sitting position. It was then that I had felt my boxers bunched around knees. I pulled the bed sheets away from me, as best I could given my physical limitations, and saw the wetness around my cock and my pubes.
"Fucking nightmares!" I grumbled out loud. I reached down to pull up my boxers and had them a few inches higher by the time Tina emerged from the bathroom. She had made herself busy and didn't look at me to allow me the small dignity of pulling up my own shorts. I gave up and simply recovered myself with the sheets.
"Hey babe, come here." I was grinning at her embarrassment. I always found her nervous activity cute. But when her cheeks were pink from something sexy; that I found downright enticing. "How about if I pretend to be asleep again, and you can go back to waking me up? Only this time, there will be no nightmare to interfere."
"You want me to?"
"Is the fucking Pope Catholic?"
"You know, you don't get to talk like that just because you're dying?" She held up a hand to preemptively cut off my rebuttal tirade. "You do, however, get to order a morning blow job whenever you wish. Now lay back and close your eyes so I can pretend my initial attempt wasn't what caused the nightmare."
We both cracked up with laughter. My laughter morphed into moans as that heat returned to my cock.
It had taken Tina nearly the whole summer to be able to say out loud that I was dying. At first I felt I should just give her time, but I found myself rewording things in her presence, so she could keep her pretense going. We were both falling into our old habits and this was not something I was going to allow. Of course, I'd had to go through my own despair, my own depression, my own paralyzing fear of what was in store.
It's funny how you pass a point and out of the blue acceptance begins. I can't say if there was an event or if something prophetic was said that caused a light bulb to go on. Most likely it was a series of events and conversations that slowly lifted my heavy veil of despair. As they say, it's darkest before the dawn. But we can never know how long the dark lasts or when it will end until we begin to see the light.
The darkest days began with the telling of the news. I got to be an expert at delivering bad news. I learned the importance of giving a clear warning that bad news was forthcoming, allowing some small bit of time to pass, and then delivering the news in a straightforward, non sugar coated way. I had practiced this technique with my golf buddy Frank Hutchinson, the last time I ever played golf.
We sat in the club house drinking beer and eating lunch. He had seen the funny way in which I walked and had kindly helped me back on my feet several times. We'd had to quit after nine holes; when Frank's concern for my balance, or lack thereof, grew too obtrusive for me to effectively calm.
"So, yeah Frank there is something wrong and it's very bad news." I sipped my beer and silently counted to thirty. When he remained silent and still I knew I had the perfect friend upon which to practice. His reaction, however, was what sealed the deal on our friendship.
"I don't know what the fuck ALS is, but I don't want to waste any time here asking stupid questions. You're going to need help, I'm you man. You're going to need someone to keep watch over the boys, I'm your man. Just tell me what, anything, and it's done." He even pulled out his PDA to begin making his lists. Frank, always so fucking organized.
Telling our sons was as bad as expected. Tina and I sat together on the sofa holding hands. We had printed out FAQ's on ALS to give to the boys. It was emotional, to say the least. What struck me as a warning at the time was how Josh clamped down and stayed that way. He asked no questions, he didn't pick up his set of print outs. He seemed more an angry observer than a participant. Tina and I talked afterward and we agreed that at Josh's age, getting ready to leave for college and all, we should give him space and time.
We then made the rounds to a few other close friends and family. It's strange now when I look back, but at the time I was so concerned that someone not feel cheated if we had neglected to tell them in person or in any special order. But good intentions.... After making two house calls for in person bad news sharing, I simply couldn't do it anymore. I was reliving my own awaking to my future each time. I didn't believe anyone would begrudge me for revising my original intention. We sent out a few emails complete with links from that point onward.
As our friends and family gathered around us, I was relieved that Tina would not be facing this alone. My greatest fear, other than suffocating to death, was that caring for me would wear her out, make her old and haggard before her time. We had been to a few gatherings of other families coping with ALS and I saw the toll it took on the wife, always the wife. There were a few husbands as caregivers, but they seemed to be solidly backed up by a mother in law or a sister or two. I absolutely refused to allow Tina to become burdened with my care.
Frank, true to his word, stopped by the house every week. He and I would go through my emails and he'd make a list of things I needed to acquire. He began to attend my clinic appointments once he heard Tina tell of her fear of my falling and she not being able to get me back up. Tina ragged on me to use the walker, Frank assured her he was but a phone call away, even if he had to lift my ass up off the toilet. Of course we both began laughing when Frank insisted this was something I had been dreaming about for years anyway. And, coincidentally, it was Frank who was called when my legs grew so weak that she couldn't get me up off the toilet. But I jump ahead.
Looking back and seeing, in hindsight, how the progression of the disease was at first minimized and excused to simple fatigue, I became even more intent on having help other than Tina. By the time both boys were back at home after their graduation and Josh was preparing for his graduation from high school, I called in Frank to help me rework my finances so I could hire some help to get me bathed and dressed a few times a week. With all three boys living at home, the house and yard work could be divided among them.
But Tina would not be swayed. She steadfastly refused to have a stranger in the home bathing her husband. I tried and Frank tried on several occasions using every tactic we could think. But she wouldn't even engage in the discussion. Damn that woman can be stubborn!
By the end of June, the darkness had closed in and griped us all. Tina had been gardening and hurt her back, but refused to get the boys to finish up for her. I slowly gimped outside, using my walker like a good boy, and found Tina crying in the shed. Considering how long it had taken me to get from the door to the shed, she must have been fighting those tears from some time.
"Babe, what are you doing to yourself? Leave that stuff alone and come into the house." I couldn't get into the shed without risk of falling so I stood outside willing her to come with me.
"I'm alright, just upset that my bachelor's buttons didn't come back." She wiped her eyes and turned away from me pretending to look for something on the shelves.
"Crying over flowers, huh? Come on, please, come with me back to the house?" I held out my hand to her but with her back turned, she didn't see it. "Tina? Tina look at me. Don't make me come in there and put you over my knee!" I was just teasing but she began to really cry at that point.
