When do I go home?

I thought that looking at an adult and hearing them ask you a question like you should have an answer was difficult. You know what sucks even more… when that adult is now almost completely paralyzed, cannot talk because he just had a tracheotomy and all he can do is mouth “When do I go home?”

ALS sucks. No way around it. You can curse the disease all you want, it simply does not go away. It ravages the body leaving most of the mind intact. As a bystander to the process it really changes you. It makes you see who really is equipped to deal with life and who simply waits for others to take charge. I never thought it would be this hard to make people make decisions… decisions that should have been made long ago. Nobody plans for stuff like this, but they should.

Do you know what DNR means? would you rather be cremated or 6 feet under?

It sucked last November to decide details on the fly for my family. Not only were we mourning the loss of a loved one, there were decisions to be made, phone calls that needed to happen and also money needed to take care of stuff. Death is not cheap.

You would think going through this would make us as a family more aware of being prepared, having frank conversations. Not really. We are still divided on decisions about level of care. We are now basically doing a lot of guessing between what is best for the sick one… what would he have really wanted? is he all there? How long do we hang on.

I cannot answer that question for him. I try to soften the blow by letting him know they still have to try to get him a little better before he can leave. I also tell him that home might not be an option anymore and a specialized clinic is the next step… codeword nursing home/hospice… is it a white lie at that point if the place does specialize on ALS?

I would love to take him back to his home and have him die of “natural” causes. Is that what he means when he asks “when can I go home?”

I wish I knew, I wish I had more answers, better answers… better yet, I wish I knew what his true feelings were. Not sure if the deprived of oxygen still drugged up version of him would think the same as the healthy, vibrant person I remember.

I hold his hand, make every stupid dirty joke I can think of to make him smile. But dam, I never knew a simple question from one of the adults in my life asking me “when do I go home?” would hurt this much. I do hope you are comfortable the remainder of your days, I will do my best to make sure you have the proper care. I am sorry I cannot do more. I do hope you get to go home soon.

I Know You Hate Me

As much as some people would love a nice chunk of drama, this is not it. My life is surprisingly free of it. I guess the changes I have been making do make a difference. The moment you remove the noise and listen to the well tuned airwaves things seem to get pretty clear. This post is a little different, it’s more of a series of thoughts that have been floating in my head. I’ve had tons of crap floating in there lately. Some of them have to do with the terminal illness of a loved one and not really knowing how to cope with that.

This part is personal… very personal. So much so that even as I write it I wonder if it is mine to tell or not. I just don’t want to forget this. Not the pain part, but who I am right now and what I think about the situation. Reading back on post from years ago is a great little reminder of who I was back then, but better yet. How have I changed.

ALS is a horrible disease. I quit talking about it partly because of the things it was attracting… horrible human beings that want to promise a cure, but are actually in trouble with the law for scamming the sick and elderly from their hard earned life savings.

There were terrible things that I had to face, but nothing compares to what the person with the disease is going through. You know what the hardest thing was for me to take… the fact that shame had anything to do with the situation. Yes, shame. As in, I don’t want people to see me having to be fed. It was not simply the pride of someone that always took care of not only themselves an others. When part of who you are is being a provider, making that unwelcome transition to be the one receiving care is not an easy one.

I was very angry. My whole life I have fought the stupid shame monster. As I get older I care less and less what others think. I am better at not taking things personal. I can honestly say that if you don’t like me, I am OK with it. I finally understood that lesson, some people will just simply not like who you are. “I know you hate me, and I am totally OK with that.”

I don’t know how to transmit that feeling to someone else though. How do I remove that shroud of shame from someone else who has always been proud. I know I have personally seen an elderly person out on the road and said they should have their license removed… but what about when that is your last sense of pride and independence.

We live in the world of superficial interaction. I am sure your Facebook has people that you don’t know well, but either would like to know better or thought you knew at one point. I have heard from others that they hate “such and such type of update.”

“I hate the people that post every meal.”
“I hate the people that post pictures of their kids on different outfits.”
“I hate the people that take up working out and all they post about is their workout.”
“I hate the people that seem to only post about their new found religion.”
“I hate the people that post about their travels.”

Why do we have such an easy time hating others for what they share? Is it always some level of jealousy?

I have not had to do it a lot, but when I do get a negative comment to something I am excited about I am quick to point out that you can unsubscribe from me, or even unfriend me. I think that feature is golden. If I don’t like your noise, but like you as a person I can simply not follow your updates. Sharing things in the internet can make us seen one dimensional, but we are all complex being with tons of shit going on in our lives. From following my Facebook you would never know that I worry about people close to me having cancer, I have someone with a terminal illness and I see them deteriorating every time a little more… my close friends know that via phone call, I don’t need the empty sympathy of a comment or worse, someone liking a sad status because they are too busy to actually type a comment. (I have seen it done, someone posts something really sad and people actually click the like button.)

So even though I think I have conquered shame, I still don’t want to fall to.

“I hate the people that post about their relative dying.”

I am not ashamed of it, I don’t want to share it… I just hate the fact that my relative feels judged in some way because of his condition. I hate the fact that there is nothing I can do about it. Nothing I can ever do (besides curing him) will ever bring him back.

We are all complex creatures going through this journey of life. I like to think that if you get to know me you won’t hate me, but if you do… don’t waste your time. I am certainly not wasting mine.

Stupid Arguments

In recent years, thanks to a lot of very frank conversations with my wife I have found out a little more about the relationship dance. Often times it is not the action that is important, it is the intent and how you communicate that intent. We don’t have to always guess exactly what our significant other wants, we just have to want to make them feel special.

One of the most famous arguments, and to me most frustrating is “What are we going to have for dinner?” We have tried so many different ways of settling that dumb argument, but in the end as long as I continue to be both flexible, loving and not frustrated with her inability to just know what she wants (or me guess what she wants before she knows it herself) we are O.K.

I am the master of taking things personal. Using that same example I would see it as a competition. Hey I am “better” because I will eat whatever, I am the flexible one, I win. In reality I was not being the best I husband I could be in that situation. I could have been providing choices and enjoying the whole experience of picking something together. I could have been decisive and say, this is what I want tonight, or I really have a taste for this. Instead many times I would just trow my arms up in frustration and just give up. Dumb right? But so are any arguments when communication breaks down.

I am a firm believer that we all have pressure valves. We never argued about much, but for a bit we seemed to argue about that dinner thing a lot. That was a way for us to get frustration out. There are more constructive ways of course, but nobody is perfect.

Everyone talks about communication but nobody really tells you what it means. I have a simple formula for it.

If there is anything that you tell a friend and you end with the sentence “but I cannot tell X to Y because they will get mad, or won’t understand, or never listen,” then you are not communicating.

We all seem to get into this routine of thinking we know a person completely and know their reactions to everything. It is almost like we are in a game show like the newlywed and lose if we don’t know all the answers.

Guess what, though? That’s wrong! The best part about a relationship is having the room for the other person to surprise you. Hey you might have been married to them forever and they hate spicy food, but then maybe the one hundred time you ask they might be like, “you know what, let me give it a go.”

I am not saying that you should push every button that you know the other person does not like. I am saying don’t always assume the same response, don’t always try to guess what they would say. You may know them well and know 90% of the responses and be right… but what about that other 10%. That is what communication is about. Letting yourself be surprised by that 10% that is different from the same response as always.

I have done things in life that I never though I would. I am learning things about myself every day. A lot of it thanks to my wife. Are we perfect? No way. We still have our communication problems. I think is important to keep on asking questions, never thinking we know everything about each other. That keeps it fun, keeps it fresh.

Most important of all, make sure that you do communicate those things you think you can’t. Make sure it is at the right time and in the right setting, but say them. Your partner in life should be that person that you can share everything with. If you don’t feel you can, there is something wrong and it should be addressed.

Trust me, you will have a way happier relationship if you ask what the other person is feeling or thinking instead of assuming you always know.

The Day Has Come

F@ck ME!

So, for a long time I’ve had the feeling that knowing as many people as I do would get out of hand. I knew I would eventually forget who someone is and where I know them from. That has happened a lot since I turned 30 and having lived in 3 different states and all. 90% of the time they are from the motorcycle scene but I can place them pretty quickly even if I don’t remember their name.

Today was the ultimate though. On the elevator on my way down to lunch I went in with a couple of people. I recognized the voice of one of them. I know him from somewhere, but cannot remember from where. I remember the voice, I remember the face, but I cannot place him at all. Don’t know his name, don’t know exactly if it was from college days, consulting days… NO FREAKING CLUE!

Besides the fact that I feel old, not XO old, but still old… I have the tingling sensation that we would see each other a lot. We work on the same floor and even though it is different departments, I see people from that department all the time.

We did not get a chance to talk but he did recognize me and said, hey we should catch up. F@CK.

He was going to lunch with one of the “stoic Eastern European” people that work here. You cannot read them, they never smile… so I don’t have any way of getting information on what he does for the company.

I have pictures from our graduation and he was not in there, I know each one of the people there… including the guy that we never learned his name but we just called him Jeff.

Getting old sucks. I remember his voice clearly though, so it has to be someone that I spent time with either in class or at work. My brain just simply can’t place him.

The only other good thing is that he could be a friend of a friend or something. WHY CAN’T I REMEMBER?

Being Single is OK!

That coming from someone that is currently married and has not been single for very much in his life sounds hypocritical, but a lot of the happiness that I have found in my relationship comes from that part. I am ok with being alone. I chose to be with my wife and share our life together.

I have written many love letters to my wife both public and private. The strands of our relationship include a lot of admiration for her, she is brave, she is extremely intelligent, eyes that I could stare at forever and smells wonderful… I wake her up in the middle of the night when I crawl into bed after gaming and love to just hug her. Yea, it would suck not to be able to do that, but before we were together I had to be ok with. I had to learn that when you live alone and have a big bed, picking a side sucks so sleeping in the middle is better.

I had to be ok with having a meal on my own, or learning to cook just for one. I had to learn to take care of my own clothes and rebuild my finances. I had to learn about independence both emotionally and in the real world. There is nothing wrong with being dependent in a relationship, but there is a certain power that comes from knowing that you are doing it as a choice and not because you feel you have to.

Dates like today make for great conversation. They are often hard for those without a significant other (or those that have lost one forever.) because the “ghost” limb effect is right there more than ever. I am not one to celebrate this or other “hallmark” holidays, but there is almost no choice. All around you there will be flowers, pink, red and cake.

So if you are single, call you friends, call your family and tell them that you love them. It is never a bad time to do so. Also, when you are single; remember you are not alone. Sometimes having good friends is more therapeutic than any other thing you can do.

Relationships are hard work, and even failed ones come with tons of lessons that will with time make your life better. So hang in there single people, eventually you will find someone that puts up with your bad jokes, your inability to put stuff away, your geekyness and love you for it.

Oh BTW, Bea got a new domain, she still will blog personal stuff in Betizuka.com, but her diabetes related stuff is now over at CrankyPancreas.com.

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