Post 33 - The Collected Unfinished Works of D. Miller

Although I have not updated the blog in a while, it has not been for want of topic. There have been some random thoughts here and there that I felt like talking about, but I just never seemed to get around completing my thoughts. This has been due in part to time constraints. Not that I'm a busy man, but my time is still scarce. I'm usually getting home from work around 4:45 PM and we typically eat dinner between 5:30 PM and 6 PM. This allows me to shut my eyes for a good half-hour, and the rest. After dinner, I'm usually exhausted, and will spend whatever energy I have reading to the girls or watching them play. as of late, I have been finding myself in bed by 8 PM. When I have had the time to blog, the effort of getting the computer, starting the voice to text software and writing, editing and posting to the blog feels like it takes more energy than I have. Over the past weekend, however, I have found the time and energy to put together a compilation of blogs from the past month that I started, but never posted. Enjoy.


The Beginning

School officially began on September 7. Up until this point, I had not worked more than three days in a week, let alone three days in a row, going back to June. During the summer, the district is closed on Fridays, and I typically took a vacation day, one day a week. May is probably the last time I worked three days, since I would usually work from home on Wednesdays to break up the week. I ended up working three straight days the first week of school. A minor accomplishment in itself. The following week, I worked from home on Wednesday, meaning I made it to work four out of five days. Again, another minor accomplishment. I was actually thinking about going for a full five days, when I came down with some sort of stomach virus that sidelined me for a couple of days. In actuality, under different circumstances, I probably would've been able to plow my way through but now, a small headache and a slightly upset stomach, puts me in bed for two days. I did not have enough strength to stand and when I did, I did not have the balance to hold myself up. This past week, I worked Monday through Wednesday and work from home on Thursday. If I really wanted to, I probably could have pushed myself and gone into my office on Thursday, but common sense got the better of me. So instead, I'll settle for another four out of five work week. Since last June, my disease has not progressed that much further, but yet, most things have seemed to have gotten a lot more difficult.

The Trip

During the third week of September, I only went into my office on Monday and Tuesday, because on Wednesday we left for Massachusetts to have Sydney seen by a specialist at Children's Hospital in Boston for her Galactosemia. This was a trip I was looking forward to with a lot of anxiety. Not for Sydney, because I was relatively confident that the doctor would tell us that she was doing great, which he did. The issue for me was the drive. If you recall my blog from approximately one year ago, it was the same time of year in which I had my driving evaluation because my neurologist thought that I should not be driving anymore. The results of my driving evaluation indicated that I should limit my driving to approximately 45 minute's. As my official F. U. to the driving evaluation results and the thoughts and opinions of my clinical team, I drove the full 5 1/2 hours back and forth to Boston. This year, it was not to be. Tracey had to handle the full load. Driving has always been my thing and something that I have enjoyed. In the past, I've driven straight through from New Jersey to Florida, as well as from New Jersey to Northern Maine. Tracey had never driven more than 2 1/2 hours continually. To make matters more difficult, last year, as I drove, Tracey was able to provide snacks for the girls, assist with entertainment and dole out discipline when needed. All tasks that I was unable to do. This necessitated several stops along the way that only contributed to a longer drive. On the way home from Boston, rush-hour traffic, and bad weather contributed to turning a five hour trip into a 7 1/2 hour trip. All in all, Tracey did a wonderful job getting us to and from. For me, however, the trip was a reminder of just how much more my disease has progressed from last year.

The Death

Steve Jobs: February 24, 1955 – October 5, 2011

Like everyone else, I was a little taken back by the sudden announcement of Steve Jobs death on October 5. Death has become a very poignant topic for me. After the first year of my diagnosis, for some unexplainable reason, I became infatuated with reading the obituaries. Not every obituary. I used to scan the obituary page for death notices of people in my age bracket. This gave me a sort of sense of comfort to know that there were other people, around my age with children and families that were passing away. I think the comfort lied in the fact that there were other people and families going through what I and Tracey and the girls were going through. It also made me realize, that in some circumstances, some people didn't have the luxury of preparing for their end and therefore, never learned to cherish their time with family and friends, the way that I have now. I am happy to say that I no longer participate in this somewhat ghoulish practice. Perhaps it is because it has been some years since I have been able to read the newspaper, but I think it was more so because I am able to finally accept and come to terms with my reality. I believe that it helped me to see that death is inevitable for everyone, and that life is what you make of it. I know it sounds cliché, but it is true. Over the past couple years; I have not been as consumed by death as I had been during the first couple years of my diagnosis. Following the death of Steve Jobs several weeks ago, I had read several articles online about his life. As most of you know, Steve Jobs suffered from pancreatic cancer, which ultimately cost him his life. What I did not know, was that we both had several things in common besides being diagnosed with a fatal disease. When it comes to diet, Steve Jobs did not eat any type of meat, except for fish. Although not as strict as him, even prior to my diagnosis, I had virtually eliminated all red meat from my diet and would only eat fish or poultry. Steve Jobs was also a Zen Buddhists. Again, I have not gone that far, but even prior to my diagnosis, I had practiced such things as meditation and self hypnosis as ways to improve my inner peace. This has become extremely important, since one of the theories as to a cause of ALS is stress and anxiety acting as a precipitating factor. To this day, my favorite book remains the Tao of Pooh, which I have probably read close to dozen times and a book that I highly recommend. We have both also tried alternative therapies to attempt to cure what ails us. I have been seeing a chiropractor for almost 3 years and have used acupuncture off and on during that same period. One of the biggest differences between Steve Jobs and me is of course our bank accounts. I have often wondered that if I was able to throw millions and millions of dollars towards a cure for ALS, would it happen? For all of Steve Jobs money (an estimated $8.3 billion in 2010), he was not able to cure himself. The thought that bothered me, immediately following his death was that, if he could lead a healthy lifestyle, both in mind and body, and he had unlimited resources, and he was still not able to cure himself, what chance do I have? Recognizing that pancreatic cancer and ALS are worlds apart, I still sometimes wonder if my attempt at a healthy lifestyle is worth it and am I just biding my time until the inevitable?

The Post

For those of you that have access to my Facebook page, I'm sure you're already aware of what I am referring to. Earlier this week, I was feeling a bit low and had what I have been referring to as "a perfect storm." I was experiencing a day where I was having a physically difficult day, along with a mentally difficult day, and the two kind of joined together and just snowballed from there. As a result, I posted the following update on my Facebook page Tuesday night: "I used to feel so much better after a good cry. Not so much when you are unable to wipe your own nose or dry your own eyes. Have I mentioned lately how much ALS sucks?" Without getting into the specific details that put me over the edge, that comment was more of a reflection of my reaction to statements that were made to me during the previous week at work. During the previous week, a number of people had come into my office and told me how good I looked. Not exactly comments that would make somebody cry. As one friend had said to me when I was telling him this story "would it make you feel better if I told you that that you look like shit?" The honest answer is, yes, sometimes it would. At that particular moment on Tuesday when I reached my lowest, I was thinking to myself that if only all those people that thought I looked so good could see me now. My typical response when people have told me how good I look (and I recognize they're making that statement in relation to how well I look with the fact that I have ALS. After all, I know I'm no Jeff Tisman!) is to respond by saying "you know what they say; it's better to look good then to feel good." Well, on Tuesday I was not looking good or feeling good. I recognize that people tell me how well I look for a number of reasons. These include that I look good for someone who was diagnosed with ALS 4 1/2 years ago. I also know that sometimes people don't know really what else to say. I know that people want to say something positive, and for the most part, with the exception of last Tuesday, I try to maintain a positive outlook and continue to put my best foot forward.
It bothers me sometimes, and I realize that this is totally my problem and/or my perception, that people sometimes minimalize what I'm going through, what I am experiencing, and the extreme effort it takes me to get through the day. When I hear people say "you look good" sometimes... not all the time, but sometimes... what I hear is "oh, I guess things are not that bad." Not too often, I will even here in my head, “what a complainer and a whiner." So, what does all this mean? I'm not really sure it means anything. Do I want people to stop telling me that I look good, and instead tell me that I look like shit? No, not really.

The e-mail

I have talked several times throughout this blog that part of my intent was to leave a message behind for my daughter's in the event that I would not be able to deliver them myself. Hopefully, if it comes to that, this blog may give them some insight to who I was, what I thought, and how they were a part of my life during this period. In short, I believe that Sydney and Emily are the main reason why I am still here today. As I watch them grow up, I become more proud of them every day and my biggest fear is that someday, I may not be able to tell them how much I love them and how much they mean to me. I am also painfully aware that someday, I may not be able to sit with them and start a sentence with "I remember one time when ..." or "I remember the day when...". Therefore, I had the recent idea to create e-mail addresses for both girls and I have taken to sending them quick little e-mails about things like how much I love them, or something that they did or said on a particular day that made me smile. I hope that someday I will be able to sit with Sydney and Emily and read the e-mails together, but I realize that that just may not happen. If that is the case, it will be up to Tracey to decide when Sydney and Emily would be ready to read the e-mails that I have sent them. If anyone else is interested in sending them an e-mail, there addresses are as follows:

Sydney: smmnj16@Gmail.com


Emily: emmnj25@Gmail.com


The e-mails that I am sending the girls are private thoughts between me and them. If you choose to send them an e-mail, please know that I will not be reading them, and that they most likely will not be read for another 10 years or more. If it is something that you would like me to read, I would encourage you to copy me at dmnj16@Gmail.com
The walk

The ALS Walk for a Cure taking place in Philadelphia is exactly 3 weeks from today. As of yesterday, we have raised over $4400. Our goal for this year was a modest $7500 in comparison to the nearly $15,000 we had raised last year. I am still hoping that we will exceed our goal as we get closer to walk day. Additionally, we have approximately 40 people to sign up to walk with us. Our goal is 75, so if you are thinking about joining us on November 5, or if you would just like to make a donation, you can do so by selecting the following link (ALS walk). Remember, if you plan on walking, it is mandatory that you sign up to register to walk. Even if you are unable to walk, or, if you are unable to afford to donate at this time you can still contribute by signing up as a "virtual Walker" and raise funds by having others contribute in your name. Once you have registered, the website can assist you with fund-raising letters and e-mails. I have said this many times, but I'm still overwhelmed by not only all the people that have signed up to walk, but in their dedication and enthusiasm to help fund raise for the cause. I can't thank those of you enough, who have signed up, donated, raised funds, and have continually supported me, Tracey and the girls.