I am an eternal optimist! In new situations I see potential instead of problems and the glass is always half full with the potential of filling even more. When meeting new people, I tend to give them the benefit of the doubt expecting and hoping for the best but at the same time being cautious and reserving judgment through actions. If you are in “my group” you are 100% in… and I will do everything for you that I would expect and hope you would do for me (Golden Rule). If I had to describe myself, the first thing that comes to mind is easygoing. I’m not a fan of drama and showmanship and rarely will follow a charismatic leader who has not proven themselves to me through sacrifice and consistent good decision making. I like to be the knowledgeable behind the scenes guy who gets things done efficiently and is always ready to step in to any role required.
My immediate family and closest friends know that I am a very stubborn and strong willed person as well as being very black and white in my evaluation of many things. I typically do not believe in spectrums of behavior believing more in assessing and discovering the true nature of people and their actions. Most people who know me would definitely categorize me as an introvert And hopefully a nice guy as well. I tend to internalize all emotions and I do a lot of rethinking through discussions and interactions I’ve had with people. In most cases I try to understand the intent of words and actions instead of what was actually said or done. One rule that I live by is that when people show and tell you who they are, believe them and use that knowledge when dealing with them in the future.
I start this article off with a bit of self analysis to describe what I consider my best and more challenging traits. The Lord knows and so does my wife, that I’m not all sunshine and rainbows all the time, but I try to be the best person I can in the moment, regardless of the situation. The description of myself above is how I have lived my life as an adult and what I hope others see in me. With all of that said, over the past year since my ALS diagnosis, I’ve been thinking a lot about my legacy and how I want to be remembered as a person.
Making peace with your own mortality is something we all will eventually have to do, some of us sooner than others. Over the past year, coming to terms with the fact that I am terminally diagnosed with a disease that has no treatment, or cure has forced me to think about many things, in new ways. One of the big realizations that I’ve had in the past 12 months is that there are so many aspects of our lives that we live because “it’s the way it’s supposed to be”. I find myself questioning why do I need to do certain things, or what makes me feel like I only have a narrow set of choices and can’t think out-of-the-box in new ways for myself and others.
As a result of this internal revelation, I’ve begun asking questions that just hadn’t occurred to me before. As an example, I am far more likely to challenge and not accept being told what to do if I don’t think it’s the right thing. For some this is a natural state of being, but for me being a non-confrontational person, I would avoid conflict wherever possible in the past. Another huge revelation to me personally has been the benefits of speaking to people openly, honestly and very directly. Over the past few months, I’ve had a lot of people ask the casual question of “how are you doing?” In the past I would have answered that question with a general placation and a reassuring smile that everything was going great. As of late I’ve been doing a kind of double take to see how genuine the question is that the person is asking, and do they want the real answer?! In most cases I can come to the right conclusion about how much information they really want to receive and if it is in both their and my best interest of answering honestly. But on a few occasions I have actually asked them (to quote a friend of mine – Tim Munns) “Do you want the truth? OR Do you want me to lie to you?”
As you might imagine my eternal optimism has diminished over the past year. As the physical limitations associated with ALS have become more challenging, I’ve been experiencing more depression and anxiety about things that I need to get done and be able to control before my passing. These range from the obvious things like paying off bills and making sure my wife and family won’t be displaced from the home we’ve made together, to making sure things that I used to do can be covered by others. It has taken me almost a year to feel like I have most of the contingencies covered and some measure of internal peace that those I leave behind will be just fine. Life will continue without me and I hope that I am thought of fondly. As part of end of life preparations I’ve done the normal things like last will and testament as well as a living will which will come into effect when I can no longer communicate for myself. My wife and I have gone over many of the decisions that will need to be made.
One of the members of my ALS care team at the veteran’s administration is a mental health professional. About once a month we have a video therapy session where we talk about many of the ongoing negative feelings and sense of urgency. One thing I’m thankful for is that this mental health professional is very familiar with and works with a lot of ALS patients. For most of my life I’ve considered counselling as an admission of weakness, but have grown over the past year to realize there is true value in sharing and talking about your emotions and feelings with a stranger. One of the things we’ve talked about is that it would be weird if I didn’t have some level of anxiety and possible depression with this diagnosis. I’ve had four sessions now, and I think it has helped me to open up about my feelings and be objective about things like worrying about possibilities in the future (AKA Future Tripping). One thing I’m learning and I’m trying to implement every day, is to be in the moment and appreciate the time and experiences I have with my family. It is important that I keep in mind that making the most of every moment is crucial while also keeping realistic expectations about my physical progression.
Check on your Buddy – Make the Call!
I have several friends who check in with me often just to see how I’m doing and almost every time they call unexpectedly when I need moral support the most. I have one friend in particular at work who randomly does a “battle buddy check” and I swear he must have a sixth sense about my mental state because it’s always in my darkest hours. Just getting a call to know that someone is thinking of you and providing moral support means a lot! Linked below is a veterans administration website for the Veteran Buddy Check System that encourages veterans to connect or reconnect with other veterans and friends.
