The Festival of Life

I'm going to preface this post as a unique situation in one person's house, on one specific night, in one specific year. What I feel like sharing is unique to me and by no way shape or form is law or happens every time or something to be held as truth. It was just something that got caught in the crazy train of my thoughts and I wanted to share them.

Tuesday night was the eighth and final night of Hanukkah this year. I did something that I don't I have ever done in my 36 years of Hanukkah. The family got together lit the candles, said the prayers, and said oh so pretty. The kids then opened the little bit of presents that were waiting for them. Since we live in a smallish condo you can see almost anything if you're in the right spot. This comes in handy for the lazy, and the man stuck in his power chair. After the presence I quickly turned back to the candles and started watching. Why I chose to do this this particular night I don't know. It could've been I didn't want to move, I started to realize this is my last Hanukkah, or I could've just been hiding for my mother-in-law.

I said in the preface what I saw this night was unique to this night and does not always happen. I sat there and watched all 18 candles burn from beginning to end and that is how my thinking starts. The shamus candle is the first candle lit as it is the helper candle to light all the other ones. On this night both of these helper candles were the first ones to burnout. As I look back now to the whole thinking are those of us in helping fields the first to go because we're so busy getting our energy to everyone else and forget to save some for ourselves. I just sat there for as long as it took for every last candle to go out. As I watched these candles melting it just made me think about life and death in general. Some of the candles wanted to lean really for to either the left or right side of their whole. Some of the candles wanted to burn very slowly and some were trying to do it as fast as they could. There was this one candle that tried to burn straight down the wick. It melted so close to the middle wax was falling to either side and if I had more wicks I could've created two new candles. Some of the candles dripped a lot of wax all over the place and some did not shed one drop of wax. It was kind of fun to watch it and guess which of the candles would be next. At one point I was sure this candle was going to be the next one gone. This little flame fought and fought not to go out and lasted a lot longer than I thought it could. I don't think I need to go into the explanation of each candle. As I watched these 18 candles burn in the way they did I thought it was very close to that in our society. Some of us get very busy on the left side or the right side of life. Some of us run our lives at a very high pace and some of us slow it way down. Some of us do anything to leave our mark on where we've been and some don't need recognition of where they've been. Some of us are just dealing and shedding life as it comes at us. Then there are those who are fighting just to stay around as long as they can. The sad bottom line of all of this was no matter at what speed they went, what position they got it, or how they melted down all 18 candles went out. That's where we are now. Some are going to take longer than others, some are going to go naturally and some are going to find unique ways to go. Finally some are going to fight harder than others to last. Any way it happens it's sad to think that will happen to all of us someday. Unfortunately mine seems to be sooner than later!

Me I Just Want a Hula Hoop

This used to be my favorite Christmas song that was in English, my very favorite Felice Navidad. Alvin wanted something so simple as a hula hoop. The song ends and we never know if he gets his hula hoop. This year is the first year I can ever remember all four of us in the Neumann household wanted the same thing, time. The girls each wanted a extra hour in the day for mommy to spend alone with them. Jenn wanted more time in the day to get everything done and take care of herself. Me I just wanted more time to spend with my family then I know I have. The ironic thing is that Jenn and Hillary got three calendars between them, I got a clock, and Madi got a watch. We all got time telling devices but none of us got the time we were looking for. It is because time is one of those simple things you just can't buy.

All month everybody always asks what do you want for Christmas, or Hanukkah. That was a tough question to answer this year. They say it is tough to shop for the man who has everything, try shopping for the man who may be dying. Sure I got material possessions. I got a Kindle from my parents, a DVD player from my friends, a nice Bills cup from my sister, a Bills clock from my mother-in-law. A lot of people are shocked to find out I got no material possession from Jenn or the girls. I made sure that there were presents for Jenn from me and more from the girls. I helped make sure there were presents for the girls from mommy and daddy, and Santa. As Jenn explained to me why there was no presents for me under the tree what do you get the man that is dying. Everything just seemed so useless, cheap, or insulting for her to buy me. As she is telling me this with tears in her eyes I'm agreeing with her. Why I'll use the Kindle, DVD player, cup and clock do I really need more crap. She could've bought me any of the CDs, DVDs, books, or clothes that I have wanted in the past few months. The question that kept haunting her was why does he need this. She is right, why do I need more crap? I told Jenn that her present to me was that she was still here. She still gets my butt out of bed every morning. She still helps me in the bathroom every night. She still make sure I eat and my needs are met daily. In addition to the now she allowed me 10 1/2 years to be the best husband I could be. She gave me eight years to be the best daddy I could be. All I really needed for Christmas this year was her love. As for my girls I got a smile, hug, kiss, and daddy I love you from each one of them. This is so much better than the latest John Sandford book. It was a simple thing like a hula hoop that I needed. Although I didn't get the one thing I wanted for Christmas this year, I did get the one thing I needed and that's all that matters!

The Rules of the Crazy Train

While my mind body and soul might be taking a lovely cruise to the end of this journey, my emotions and personality are in charge of this crazy train that I live in! No it's not all crazy there are rules that govern this train as it goes barreling to that brick wall. First and foremost I ain't going out like a punk bitch, I'm doing this thing my way so watch out. The train will make many stops for people to get on, but once you're on there's no stops to get off. Just like at the Hotel California you can check out any time you'd like but you can never leave. Speaking of rules the Golden rule does not apply here because believe me you do not want me to do unto you what I want done onto me. Unlike I am teaching my children if I have nothing nice to say, I am going to say it anyway! It is important to know rum is appropriate with any mixer. Rum in coffee, juice, pop, beer, coconut water, heck anything you drink is acceptable. Notice I am saying is acceptable not that you should do it all the time and become addicted to it. On my little crazy train I am going to eat anything I want to. This means in my short future there'll be a hot fudge sundae, peanuts, and popcorn on my menu. Heck I may even just go put cracker jacks on a hot fudge sundae and eat it that way. I have not had these items in close to two years and I don't care what kind of coughing fit these items might cause, because I want to eat it again. The word fucking is a fucking appropriate adjective for any noun you may find. This rule is null and void if there are children present. Crying and emotional outbursts are perfectly acceptable by anyone of any age while riding the train. Like I keep telling Madi, I would prefer the outbursts not be physical. There is enough emotional pain going around this train we don't need physical pain as well. I really only have so much Vicodin to go around and it's mostly going to me. As the conductor on this long strange trip my door is always open. I'm just not doing the inviting. If you feel you have talk to or communicate with the conductor I am more than willing to listen in whatever form of communication you use. Just know I'm busy steering this train and it may take a little time to get back to you. Don't worry about that brick wall we are traveling towards. I have installed every safety device I could get on the train so that when we do find that brick wall everybody but the conductor will survive. Finally this is an honest train. As I've been using for some years now a Judge Judy saying " don't spit on my head and tell me it's raining. " I am not going to hide anything or sugarcoat anything on this train. There may be some speculation on my part, but it will be my honest thoughts not something to make people feel better.

Thank you for riding this train with me. It may be an express trip but it's going to be a fucking exciting one!

Oh no it is the H word!

Last night and today I finally decided to sign the papers and move from palliative care to hospice care. I know the word hospice scares the heck out of most people. In this case, on this blog, it is not a scary decision. Making this move is not moving me to some building for people to come and watch me die. I am still at home doing what I always do. There has been no medical change to me or my care. Hospice does not mean imminent death. I still have the same 3 days, 3 weeks, 3 months, 3 years diagnosis. I don't want people to run out and worry that something has changed or that I am in any immediate danger. For me this decision was made for extra services provided to me. The nursing visits, and CNA visits, and social work visits will increase and that means more eyes watching my reaction to everything around me. It also provides more support and care for me and my family! It provides better access to medicines and procedures in my house instead of hospital stays. This change is a positive change not a scary one. As of now everything is normal, well Matt normal. I still hate this 10 inches of snow outside my window but that isn't going to change anything I do. Thank you again for reading and/or enjoying this blog. Saying what I need to say when I need to say it has been therapeutic in a way for me. So I guess I'll just finish the way I began reminding everybody this big scary H word is not scary, it's just hospice!

When did I become stupid?

I have always considered myself a very smart person. I also used to joke around that in most people the mind is the first thing the go but I was sure my mind would be the last thing to go. Now I just feel a little bit dumber everyday. At one point I had my children convinced they still may be that I was the smartest man alive! In some cases it still may be true. I still have all the knowledge from my two college degrees, the knowledge from everything I've experienced, and all useless knowledge that goes through my head that I was famous for. The problem now is I can't answer the simple questions. The other night my dad asked Hillary what is the only mammal that can't jump? I looked at him said that's a trick question there's more than one mammal that can't jump, and the argument ensued. His answer was the elephant. My answer is elephants may not be able to jump but neither do dolphins and they are a mammal. Everybody joined in about dolphins jumping through the water. I said by definition dolphins do not jump and they all tried to prove me wrong. Every definition of jumping they found mentioned legs as the foundation of jumping, dolphins don't have legs! That I know, but what time Jenn is getting off work tonight I don't know? Who's got my kids tomorrow, I don't know? What are we doing this weekend, I don't know? This will go on and on into this void. It has gotten so bad that I don't even know what to think about anymore. It happened during the Bills game Sunday. While I watched them get pummeled again I quickly thought about the draft and what we needed to be better. Then I thought why I do I care, I probably won't see next year. All these years I've sat and thought about what's next. Now do I really care about these useless things about the future. Do I really care who's going to make up the Yankees pitching staff, who the Bills may draft in April, what book I read next, and the list can go on and on. It just feels like I know nothing anymore. There's this giant void that has encompassed me and the only thing I know, is I don't know! I can sit and look out the window all day and not know what to think about. It's scary because the only thing I know I can think about is the past and that depresses me as I realize how much crap I've done and how much fun it has been! Just about everyone out there that is reading this has one of these stories. Remember when we got Neumann to eat such and such, remember when we got Neumann to do such and such, or remember when Neumann's dumb butt said such and such and I'm sure the list goes on and on. That seems like the only thing I have is my past. There's no real future so I don't know has become my answer for everything because I really don't know. When you spend most of the day saying I don't know that's when you start to wonder when did I become stupid!

Why the Title

In case you're wondering how I chose to title this part of my journey it came from Jimmy buffet of course. His song Lovely Cruise has a very poetic meaning in my life. He uses it a lot at the end of tours to signify the end of summer. The lyrics could easily be interpreted as a lifecycle that is how I've chosen to look at it. This song will be played at my funeral as these words truly do describe my feelings. If you have never listened to the song I've included a link to YouTube and a good version of it.

http://youtu.be/rfY4NMaQd68

For those of you who navigated here

Those of youwho have found this blog must be interested in what is going on. I will update the page as I learn new information or anything changes with me. I'm not going anywhere yet. I'm still at home and functioning as normal. I still have the same AIM address, I'm still using the Facebook address I still have the same e-mail address. I spend most of the time in my house playing games and doing this crap. The phone is always with me with the number 720 – 748 – 0449. Just be aware I do not answer long distance calls that say toll-free, unknown caller, or unknown name. If you do call and I don't answer leaving a message and I will get back to you. If I don't have a message I don't know who called. Thank you for navigating here with me and please use this site as you need to during this journey.

Life-changing news

Life-changing news about Matt Neumann. Okay to be honest it may not change your life but it sure is changing mine. After many, many years of fighting with my body and a disease that took it over we are nearing the end. I struggled and struggled about how to get this information out to all the people in my life. I have had five different hospital trips in the last seven months. They have been diagnosed as pneumonia, chronic heart failure, interstitial lung disease, too much excess fluid, and a blood clot in my lungs. My last trip at the beginning of December cannot be classified in any of those categories and we really don't have any ideas on how to stop it anymore. We don't know how long this process may take as I could have 3 hours, 3 days, 3 months, or 3 years. The bottom line the end is coming soon and I am no longer going to aggressively fight it. I've entered into hospice care so there are more eyes watching me at home. I needed to get this information out to all of you as if you are getting this you've touched my life in some way and I just hope I have done the same for you. Also being the person I have been I would've hated myself if I didn't give others time to deal with this information while I am still here. I have created a blog located at http://mattslovelycruise.blogspot.com for anyone interested in this journey. This is where I will update my information so that only people who want to know can now and those who don't want to don't have to hear about it. I will put a status update that the blog is updated after I post information. Thank you to everyone for their support, prayers, and wishes over the years as they have meant a lot to me. Everybody has to say it someday so for those of you that this is just easier goodbye everyone and may you go on to accomplish great things.

Matt