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The rain storm is howling today, beating upon the roof and the windows. My soul screams along with the weather, howling and beating. I cannot break out of this cycle of pain and regret that leaves me fuming, yet futile. I eat too damn much, and play too many video games trying to numb myself enough so that my anger does not flow outward towards those whom I love. My anger comes from guilt, and pain. I did this to her, I made her pregnant, I convinced her to have a kid, and that brought her disease on so much worse, and made all this happen. She wants to die now, and it is my fault she does. I am so angry at God, though in the end he has little to do with it, it was our choices that made things occur, and had we known then what we know now, my son would not exist. While I will never regret his existence, or the amazing soul that he is, there are times when I would re-think that decision in the light of the torture his mother is going through. I might still arrive at the same choice, but I would be better prepared for it.

I realize I use this blog to bitch, whine and complain a lot. Today I wanted to post something different. Yesterday was beautiful. My wife, who over the course of the last year especially, have had many difficulties related to her disease, and this has caused much discord. We have been snappy, grumpy, and full on arguing many times. Yesterday was different. We connected in a way that we have not for a long time, we were able to feel each other  in a way that had been absent.

People talk about ESP and things like that, but I have always believed that there are connections between people, that there are times when you can sense emotions, thoughts, and know something of the other person, even if you are not near them. Watching my son and his mother when he was growing up proved that to an undeniable point for me.

Yesterday, that connection with the woman who I share my life with was back, it was flowing both ways, it was alive and recharged. This morning, it is somewhat dimmed due to pain and other things, but it is not gone. And…when we touch, it came roaring back to almost the same strength as yesterday. Her fingers felt as though they went deeper than my skin. I could feel the energy around me changing at her touch. Call it an aura, call it pheromones, call it what you will…it was nice, it was more than that. It was beautiful and meaningful. It was…intimate.

 

How are you doing? Fuck I hate that question. No one really has the time, or the energy to really sit and listen to my answer. People sometimes, especially here in the North where I live, actually do care, and want to hear the long answer, but usually they ask me at work, where God help me, I am not going to fucking break down and cry, which is what will happen if I tell the whole story.

I usually give glib answers, like ‘Fine, just fine’, or ‘Hanging in there…’ occasionally I squeeze in little responses that vent some of the anxiety and stress building in my freaking brain. “Oh…finger nails haven’t come out yet, but holding on.” Or, “Air goes in, Air goes out…repeat as needed.” How do I tell people I am tired because I spent the night holding my beloved wife as she screamed at God begging to die? How do I tell them my son has issues with handling problems because of the stress of his mother’s illness. How am I doing? Fuck, man, I am doing freaking horrible. I can’t do this shit, I really can’t.

My wife’s MS has been a slow steady destruction of one of the most beautiful human beings I have ever known. She was active, compassionate, caring, an awesome, give everything she had worker, mother and wife. She cheered me on at football games, was an active teacher for our son of everything that he showed the slightest interest in, she was a runner and just a go-go-go type person. Now…not so much.

I hate this fucking disease with a passion I usually reserve for racists and Air Raid coaches. I hate it, I hate it, I hate it. If we knew there was an end, if there was a steady progression, like cancer, or ALS, we would know what was coming. The joke the doctor’s make is this: Once you have seen one MS patient, You have seen one MS patient. Each person is so different, and it all depends on when you catch it. We caught it late…we lost an extra year because of a misread MRI. A FUCKING YEAR! In that time my wife lost her mobility, she went from being able to walk mostly unassisted to needing crutches, and within a year after that she was using a walker. This is a woman who would run five miles without really sweating or breathing hard. Now…she has to have me help her just to get from the couch to standing up right. Every day is different, every day brings some new pain, or some new hope…that gets snatched away a week or a month later.

Hope…there is no hope anymore for us. That was destroyed at the middle of this year. Hope is dead. Fuck hope. Fuck you too those people who say, ‘they are coming up with new stuff all the time.’ Yeah…if you are rich and willing to pay for it, or able to. Insurance…that is another SOB that I hate. Screw you to both Democrats and Republicans for this monstrosity of a health care system. We don’t want health, or healthy workers, there is no money in it. We have a disease management system. Fuck you guys.

Hope is dead. Dead dead dead. Every time we start to hope, see some light that maybe things will slow down, or get something resembling stability…here comes the next crash, the next bad thing. Screw hope. All I can do is go day to fucking day, trying to survive. Trying not to be an asshole, trying to take care of my wife. There is a voice in my head that keeps screaming louder that I should listen to her when she is crying at me that I should leave. There is this gibbering coward in me that wants that…to lose this responsibility and to run, run like a little whiny kid, snot running down my face. Fuck that kid. I am a man goddammit! I stick, I am loyal. Fuck that shit. It is hard, it is brutal and it is slowly killing my spirit, but I cannot leave, I just can’t.

I am so tired. I don’t sleep. My memory is shot. I am forgetting important shit, like meds. I am worried I am going to do something, forget something that will cause her more pain, or kill her. I am so tired. It is like walking through life with 50lb weights on every goddamn limb right now. The only surcease is brief moments of writing or playing video games. I have to be on…4am to 10pm. Every single fucking day. Fuck I am tired. There is no respite, no vacation, no break. Every fucking day.

So yeah…when people ask me how I am doing, they better be ready for a whirlwind. They better be ready for pain.

 

 

There are mornings when the brunette is nearing psychotic status. She beats herself up, she calls herself the most horrible names, names that if it were anyone but her calling her those things I would be doing my very best to crush them into scrap protein. She struggles, so much. The fight is a nightmare, a brutal fucking nightmare that she deals with every day. I cannot be anything but a witness, I cannot help her in this, except in those brief moments of respite, where I can hold her and tell her I love her. She keeps telling me to leave, to abandon her, that I am screwing up her life and that of our son. How can I show her such disloyalty? How can she ask that of me? She talks of this screwing up our son, but in my eyes, it shows him the price of loyalty, what it really means to stick it out, to be true. That it is harsh, but it is duty and love that keep you together, even when the worst happens. Cut and run has never been my motto. It takes a lot for me to quit someone. I can’t quit on her, she never quit on me, even she completely could have. This past year has been a chaotic maelstrom of job changes, life changes, health changes. No chance to even settle, to breathe. So much so that I want to gouge my eyes out sometimes. I wish she could have just a day without pain. Just a day, Though even that might be too cruel, because then she would know it was possible, and destroy herself further, trying to achieve it again. There is no peace, only war, only the constant conflict of the battle against her disease.

Things have been sucking for a long time. They just suck worse now. You think you know, going in, what it is going to be like, what the challenges are in something. You don’t know, not really. I keep having to relearn that lesson, that I do not know, and that I need to quit thinking that I do, I need to be more open to the possibility of learning, I guess. MS when caught early, can be managed. When through happenstance, and the incompetence of certain doctors, it is not caught early, even when it could have been, it can be brutal. I never understood before, why or how people would split up when one became disabled, or was facing a terminal illness. My parents hung in there, and they were caring and loving each other to the very end of my Mom’s life. I think the difference, is there is no end game here. There is no point where we know she is going to die, this brunette of mine. It just keeps dragging along, with moments of horrifying hope that it might slow down, but nope…just fooling ya, and she crashes yet again. Bit by bit, piece by piece, She is being taken. First her ability to run, then her ability to walk, and this last flare, taking her hands too. She is soon going to be in a wheel chair, and unable to care for herself in any way. And selfishly, unable to care for me in any way either. It is not fair, this life, it is brutal and hard and cold. I want my son to not know how nasty life can be, even though he already has a good idea after watching what his mother has gone through this summer. Our marriage is being taken from us too, and our friendship. I always thought, no matter what, that we would be friends. Even if we split up, that she and I would be friends. Not so much. The pain, the mistakes, the thousand and two hurts that happen in our every day life brutalized that out of us. Just trying to hang in there, be civil, be polite, not jump on every little slight with both guns blazing and all the hurt that has been built up over the last two years to come vomiting out of your mouth like a fucking volcano, just managing that, take every last frickin ounce of strength you have left. I understand now, why so many people split, it is hard, this life. It is hard to remember that your partner is more than just their disease, and to try and to fight for some preservation of detente between you. It is hard on the other person’s part not to feel resentment that you have everything, and still you can not get shit right. Its hard, all of this shit is hard. I wish I were nine again…Cookies, milk, playing in the cornfields. Fuck this shit. I want that again. How little I knew, and wish I did. How little I know, and need to remember I don’t.

It has been there before, an ephemera, a phantasm. Hope. I don’t want to believe it anymore, I don’t want to put any stock or faith in it. It has been dashed so many times. Granted, any relief in the miasma of misery that I currently wallow in is something. I just don’t know that I can take another betrayal, another moment spent regretting what could have been. I do not want my life to be just about being a caretaker. Neither does the brunette. She doesn’t want that for me. In her darkest moments she screams for me to end her. At times, in my darkest soul, I agree that it would be for the best for her. Not for me. Never for me, or the boy, or the daughter she loves. It would be the beginning of a worse struggle than the one I have now, fighting against the slippery slope of this disease. I would be left with nothing, not even the echoes of her. Simply memories, which, with my fading mind, would fade far too fast, leaving me with no lasting impression of a love that thrived, that survived, that was amazing.

I cannot bear another betrayal by fate. I don’t have the strength to put us, myself, her, the boy, back together again. I barely recovered from the last one. I don’t know if I could do it again…

Its is late, after a long day. Had a cider to cool the edges of my raw nerves. She is weak, exhausted and tired, her body wrecked worse than normal. I had to feed her today, something I have not had to do in six months. She is tired, scared and bitchy today, and I am sensitive and want to respond to every barb with words of vitriol. But I won’t because once I do I wont be able to turn if off.

My company is dead. I attended the funeral today, standing around with the others waiting the news of the final dissolution of our pride, our home away from home. We died today. All of us, all us workers. We are no longer a family of co-workers, just a bunch of people who used to work together. So we died today. All it took was one man’s pride to bring us down…

Being in a company that is dying is like losing a relative. We sit, we come in and do our best to go through the motions, but it is the grinding apathy that numbs you, that leaves you bereft and listless. You don’t want to feel, you don’t want to care, because it will overwhelm you, that this place, that you spend time at, that you sacrifice your family, your energy, your emotion, your enthusiasm, your blood for, that it is dying. A slow inexorable death, staved off time and again, but it is coming, certain as the sun. So we wait, our silent vigil, some not so silent, as they exit the situation, by suicide or by walking away from the corporate bedside. I cannot blame them, any of them. Perhaps I am a masochist, watching the death throes, waiting for the end. I have been here before, my loyalty keeps me by the bedside until the end. I did it with my Mother, I am doing it with my wife, and I will do it here, with my company. Slow, creeping pain, as the back stiffens, awaiting the end that must come, never soon enough, but it comes.

http://www.amazon.com/Fractured-Fairy-Tales-Catherine-Stovall-ebook/dp/B00QJ098F8/ref=sr_1_2?s=books&ie=UTF8&qid=1417738898&sr=1-2&keywords=fractured+fairy+tales

Still ever so grateful to Catherine Stovall for publishing my story Luvia in this work!