About Me

My photo
For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Thursday, June 23, 2011

Post 28 - My Own Little Two-Part Miniseries

 I will apologize in advance for the length.  It has been sometime since I last wrote.  I had intended to write last week, but I was temporarily sidetracked. More about that later. Earlier this week, my computer came down with another virus, and I was finally able to get it fixed today.  Overall, from a physical standpoint, it seems as though there has been little change over the past three months.  I continue to get weaker throughout my body, but the changes have been subtle, to say the least.  The battle that I continue to wage with my body has been just as tough on my mind. And just like the physical aspect, some days are better than others.

Part One - Guess Who's Coming to Dinner

2 weeks ago, I took what was rather a daring step for myself. I went out to dinner with a friend. This marked the first time I'd left the house without Tracey since I'd gone out with a group of friends back in early April. I had a little less anxiety about that trip, because I really did not plan on eating much food and only intended to have a couple of beers. Also, I was much more functional at that time, still able to navigate with my braces on. I was not relying on my Walker at this point, and I was still able to get myself up and out of a chair. I was going out with my good friend Jeff (Jeff Tisman Photography - portraits, a specialty) and even though I felt comfortable going out with him, Tracey has been my constant safety blanket. She has become very adept at anticipating my needs, and subtly assisting me when necessary. I made it to the restaurant and through the meal with little difficulty. This was not only a major relief, but a major accomplishment for me as well.

Several days later, we attended the baptism of a very close family friend's son. Afterwards, we went to a restaurant to celebrate with the family. All in all, there were probably about 35 people in our party, in addition to a full restaurant. This was to be my first experience in utilizing my power wheelchair (actually, I believe it is PC to refer to it as a "power chair") in a close, confined setting with many people. It was also going to be the first time that I used the chair at the table for a meal. My anxiety actually started about two weeks before the event, but began to increase dramatically a few days before. Feeling anxious is nothing new to me, and it is often moments like this where my compulsion to self- analyze kicks in. As I began to contemplate the possible reasons for my anxiousness, I almost immediately ruled out self-consciousness, with regard to using the power chair. Although I've had many bouts of insecurity throughout my life (in addition to the anxiety) over a whole host of issues, self-consciousness regarding my appearance has never really been one of them. Anybody who saw me at work after my last haircut could attest to that. In the end, I think I realized that my anxiety stemmed from Tracey and the girls. With Tracey, I'm always worried that she has too much to do and I'm just one more thing that she needs to worry about and plan for. To go to a restaurant, I know Tracey's already thinking about packing up everything that she may need for the girls and me, worried about menu choices and food options for Sydney, worried about making the environment accessible and as normal as possible for me, and in general, keeping all of us happy. I know she is worried about me enjoying myself on having a good time. In short, I worry about Tracey worrying. Are we a compatible couple or what?

The other contributing factor to my anxiousness this day was the girls and this has been a recurring theme. As Sydney gets older, she is becoming much more aware of what is being said and what goes on around her. It seems highly probable that Sydney will be the more sensitive of the two. Much like her father (I was still crying in school all the way up until second grade and used to cry whenever my mother left the house). Sydney has asked questions about why I need mommy's help to do things, why I wear leg braces, why we have a ramp in front of our house and several similar questions. For now, we have told her that daddy's arms and legs get tired and these things make it easier for me. She has asked if I will get better, to which we simply respond that we hope so, and she has also made reference to a time when my legs and arms will be better. I am sure Emily will have similar questions in due time as well. My concern about Emily is what her memories will be of me. I was able to do a lot of the typical daddy/daughter bonding things with Sydney that I was not able to do with Emily. By the time Emily was one year old I was no longer able to hold her and I was starting to have great difficulty getting up from the floor, which hindered my ability to play with her. I never had the opportunity to give her a bath or feed her at the table, or spend meaningful time alone with her. I worry that I was not able to establish emotional connections with her. I also worry about the girls worrying about me but I'm also concerned about them becoming self-conscious about having a father in a wheelchair. Growing up and being amongst one of the first kids in the neighborhood to come from a divorced family at the age of 8, and living without a father present in my life from the age of 12, left me feeling very self-conscious knowing that my family situation was very different from that of most of my friends. That is not something I want Sydney and Emily to experience. I am concerned how they will react or how they will feel when their friends see their father in a wheelchair and began to ask questions, or when their friends ask why their father doesn't coach soccer, or help out with Girl Scouts, or 1 million other things. It's not their fault, and it's not fair to them that things have to be different.

Needless to say, everything worked out well at the restaurant. I was able to park my chair in a nice spot and enjoyed some Coronas, calamari and chicken fran├žais. I was even able to hold my fork better than I expected, before tiring out towards the end of the meal. I enjoyed a lot of good laughs with my friends, and did not really feel out of place at all. Most importantly, neither did Tracey or the girls.

Part Two - That Was a Real Pain in the Chest

For the past month, as the school year starts to come to a close, for most people the workload starts to wind down. For me, this is one of my busiest times. I have to ensure that all services are provided prior to the end of this school year and have everything in place for the beginning of the next school year. In addition to working 12 months, unlike most other school personnel, my staff works throughout the summer as well, so there really is not an end of the school year for me, although this time of year is certainly less busy. Since I became a supervisor, I started a tradition where we hold our last department meeting of the year at the end of the school day and for the last two years we have met off school grounds, to blow off some steam and toast the school year, if you catch my drift. Our "meeting" was scheduled for last Thursday afternoon. On Thursday morning, when I got to work, I was experiencing some pain in my chest whenever I took a deep breath. Common sense would tell you not to take any deep breaths, which I attempted to do. By the time 11:30 AM rolled around, the pain came with every breath. I called Tracey and asked her to come and pick me up. I knew she was going to want me to go to the hospital and for once, I gave her very little argument. I did not think I was having a heart attack, but I had no idea what the pain was from, all I knew was that it really hurt. I told a coworker about the pain and she had the school nurse come down and check me out as a precaution. By 1 PM, I was in the emergency room, and by 4:30 PM, I was informed that I would be staying overnight for observation. Two of the most critical diagnoses were ruled out; heart attack and pulmonary embolism, which was good news. My blood pressure was much higher than usual and blood tests were coming back negative, except for some elevated levels relating to the heart muscle, but they were unsure of whether or not that was related to the ALS. I was having a lot of difficulty in the emergency room, not only with my breathing, but as far as trying to get comfortable. By not having much strength in my arms it was very difficult for me to move without assistance. I was unable to move from side to side or reposition myself in the bed. For the first time, I felt like what it would be like to be paralyzed from the waist up, and could not help but think that this might be my future.

Later on that night, after I was moved to my room and Tracey went home to take care of the kids, I had even more time to reflect. Again, I was unable to move in the bed, I was unable to move my arms so I was unable to adjust the bed up or down or put on the TV. I was not even able to press the call button to contact a nurse, if need be. It was going to be a long and uncomfortable night to say the least. Tracey had argued with me to stay, but I was insistent that she go home so that the girls could see her before they went to sleep and that she would be there when they awoke, to give them some sense of normalcy. Again, I did not want Sydney and Emily to worry. I thought about how this might be “good practice” for Tracey and the girls to experience life without me. I know, a little ghoulish but again, I could not help thinking how this may become our future. I managed to make it through the night with very little sleep and a lot of pain. Although I initially declined any painkillers in the ER, I agreed to take one around 7 PM, which did very little for me. At 3:30 AM, when the nurse came to check on me, I asked for another one, and this time it seemed to help. I slept from about 4 AM to 7 AM and the pain was somewhat reduced when I woke up. Tracey showed up around 8 AM, helped me eat my breakfast, and by 10 AM I was discharged and on my way home, feeling slightly better but still with no answers. The consensus between the ER doctor, a Cardiologist and my primary physician who came to see me, seemed to be that the pain was either caused by a muscle strain in my chest or a viral infection. It felt good to get home and see Sydney and Emily. Sydney's first question to me was "daddy, do you have pain?” I let her know that I was feeling better, and she seemed somewhat relieved.

I have never considered myself someone who is particularly afraid of death. In fact, if you ask some of my friends from my past they will confirm that in my younger years I used to predict that I would not live past 50. This prediction was primarily based on an article I once read in which it was stated that the life expectancy of left-handed males was much lower than right-handed males. It put the average life expectancy of a left-handed male somewhere around 50 years of age, and I have always figured myself to be average, at best. Although at no time during this episode did I seriously consider this possibly being "the end,” it did cross my mind, that regardless of the ALS or not, it could very well go down like this someday. When the pain started to get bad in my office and while I was lying awake in the hospital, I thought about how I would approach things if this had been something more serious with a much more potentially disastrous outcome. While at work waiting for Tracey, I looked at the many pictures of Sydney and Emily throughout my office. I felt very comfortable and at peace looking at their smiling faces. I filled my head with happy thoughts and memories of them both. I also did this quite frequently during the night at the hospital. Again, each time, my mood and spirit was instantly lifted. At times, I thought about how Tracey and the girls would be if things did take a turn for the worse, and came to the conclusion that they would be okay. I know that my family and friends would help look after them. I see how strong Tracey has become and how much Sydney and Emily continued to grow as individuals. As I go through this, I become more proud of the three of them, each and every day.