Opening Up Letting Go Ch. 08

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.

I imagined the picture I presented of myself right then and agreed with Tina's tears at the pathetic and empty threat of a man I had become.

I turned around and slowly made my way back to the house. Leaving Tina alone with her tears seemed the best I could offer her now. She didn't want me to see her desolation. She didn't want me to know how stressed and weary she had become, in so short a time. My empty tease had only served to highlight what she had already lost. She was in her prime, a beautiful vibrant woman. Now she was stuck dressing me and caring for me and it would only get worse.

I resolved to call Frank and have him take me to the clinic. From there I could get someone to give me a lethal dose of something. Surely they wouldn't force me to progress to the very end, I reasoned. Even in this country, where euthanasia was called doctor assisted suicide and was still illegal, having ALS was a completely different ball game. There were more than a few doctors who quietly let it be known that they would help when the time came. They could be counted on to allow me some dignity, allow me to allow my family to morn with something of their souls still intact.

By the time I got into the house I had everything all planned out in my head. I need only make a call and get the ball rolling. Frank could tell something was going on but he respected my silence and agreed to pick me up the following morning. I then set myself to work on this very narrative. I didn't start out as a narrative. I originally wanted to leave Tina a long letter expressing my love, sharing some memories and some hopes for her future. A suicide note, in short. In actuality a suicide note in length as I've come to learn most suicide notes are actually pretty short considering all that they're supposed to contain.

I think it's safe to assume, I didn't die, not then. I spent the following week or so avoiding everyone and everything. They had turned me down at the clinic. Rotten lying bastards! I had to find a way to end this before I dragged everyone down with me.

It was a Monday afternoon and Tina had been out shopping. She came home with Josh, who had taken on none of his share of the work around the house, but seemed to demonstrate everyone's quota of self pity and anger. He slammed his bedroom door announcing, in his way, that he was not to be disturbed. I stayed on my recliner in the family room and ignored everyone's mood. Tina came into the room and offered to help me to the bathroom if I needed it. But I didn't so she just refilled my iced tea for me and went back to the kitchen. The phone rang several times, but none were for me.

I must have dozed off at some point because about an hour later, I had heard Tina arguing with Josh about staying at least on the same floor as me, since my voice no longer carried that far. I heard her crying, I think. Then I heard something bang. I was just wondering if I should call Frank when they both came down the stairs. Josh looking sour and put upon was becoming his normal look.

Tina looked... worried? She stood there in the family room, looking right at for a long time. I got the feeling she wanted to say something but she didn't. That was odd, I thought. For the longest time I had only seen her look tired and weary. Now she just looked worried. What the hell was going on I wondered?

Tina came back into the family room and told me she was going out and Josh would be home if I needed anything.

After she left I asked Josh what the hell they were arguing about it upstairs. A big fat no response was Josh's reply. I let it go. A few minutes later, I had to piss. I began to move toward getting up but after realizing Josh was my help for now, I thought the piss bottle might be a better alternative.

"Josh, bring me the piss bottle please."

He ignored me.

"Josh, I need to take a piss. Bring me the bottle please."

Again, he ignored me. So I threw the remote control at him. When it went nowhere near him but landed by the fireplace and cracked into several pieces, I believe he became concerned. That got his attention. How would he ever change the channel now?

"You know if you're not going to help me out, just say so." He turned away from me to glare daggers at the TV. "What? You're waiting for me to piss my pants? That isn't going to happen. Now please get up and get me the piss bottle. NOW, Josh!"

As Josh continued his refusal to help me, to talk to me, to even look at me, I had to face the reality of what was. Josh hated me now. Hated me for what I was doing to his mother, for what my disease was doing to our family. I wanted to cry, just lie down and cry for what no longer was.

I slowly edged my way out of the chair and brought my walker around to the front. Standing and walking I could still do, mostly. But getting to a stand was damn hard and usually impossible. I lowered the walker several inches, thinking that would give me better leverage to get up. After a few attempts it worked, I was on my own two feet.

But the walker's height was all screwed up, I ended up going forward and not stopping till... I woke up. Josh's head was over top me, he was dabbing something on my face and I realized my face hurt really badly.

"Now can I have the piss bottle Josh?"

"I'll get it for you! Just let me get you back in your chair."

Once settled in my chair, with the plastic long necked urine bottle between my legs I was able to empty my bladder. This gave me the opportunity to relax a little and think about what to say to my youngest son who thinks he's man. I recapped the bottle and placed it on the floor next to my chair, making a mental note that from now on, maybe that bottle should stay next to me rather than in the bathroom. After I voiced that thought to Josh, he finally spoke to me.

"I'll be sure to let Mom know your newest demand."

"So I'm demanding? Too demanding maybe? Yeah, I guess not wanting to piss my pants is ... Oh Christ Josh. Come on, what's this really about?

"Nothing." The brilliant teenager, who aced his AP placement tests and will be entering college in the fall with enough credits to be a sophomore, replied!

"Josh." I quietly said his name. I just wanted to end this current round of hostility and get back to normal. But I had a new normal every week, just about. "You're angry, at me, at ALS, at what's happening to your mother, to all of you. Don't you think I ..."

"Just stop it Dad! God Damn you make me so mad!" He threw himself up off the chair and faced me, eyes blazing. "It's always me picking up the pieces, it's always me! Who do you think kept Mom inside for weeks back when she was sick? Who kept her from accusing the neighbors of taking our trash cans, or trying to spy on us? Who do you think made our lunches every morning? Who do you think held her hand when she cried all day? Who do you think sat with her in the closet, telling her there were no scary people around and she was safe? That was me Dad, ME! Things got better but now... Now it's right back to where it was again. Only this time I'm not a little boy who's stuck inside with his Mom. I am going to college in three months and there won't be anyone here to hold her hand! Do you think I can let that happen?"

He was pacing and running his hands through his hair, just like his mother did when she was upset.

"Brian and Braden, hah, they took off whenever Mom got bad. They were old enough to go to their friend's house. But it was me who stayed inside with her!" He began to beat his chest with fury. "It was me who turned her closet into a safe house! At least in there she wasn't accusing people of crazy shit!"

"Josh, please, I mean come on, I had no idea she was that bad until you called the ambulance. I never knew ..."

"Like hell you didn't know! I told you myself! I told you she wouldn't let me out of the house, we hid in the closet again today, we're out of lunch meat...I told you the only way I could! I was just a kid!"

"Josh. Oh my God, son, I honestly didn't know. I'm so sorry you were put through all that. So sorry you had to be the one who saved the day. You were the one who finally called an end to it and got your mother help. It should have been me, not you, who called the ambulance that day. It should have been me."

"Yeah, shoulda, woulda, coulda, Dad! But it wasn't you! It was ME!" He had stopped pacing and turned back to me. Faced me with the same rage in his eyes I had seen in Tina's eyes all those years ago. "And it was me who lied for you so she wouldn't find out about the other women too!"

Well that was a new kind of slap in the face.

"Stop! You go too far. Stop there, right there!" I was not going to have this conversation with my son. It was none of his business, there was no way to explain it, no way to help him understand what that year was like for me and the stupid way I acted trying to get my balls back.