I haven’t actually eaten anything in at least three years! I haven’t actually spoken a single word in just as long. But despite all of that and more, I have a wonderful fucking life.
I am not an emaciated deaf mute if you’re wondering. I was diagnosed with ALS in 2012 and I slowly lost the abilities to walk, talk, touch, eat, and even breathe. I have had a feeding tube for six years, a tablet with eye gaze technology to communicate for five years, and have relied on a ventilator to breathe for almost three years. Talk about baggage!
I think it is safe to say that I live a fairly unique existence. I have always been someone that strives for individuality and man, I might have taken it a little too far — but that’s just how I roll! Oh, I mean that literally and figuratively. I use a massive 250 lb power wheelchair to get around.
As difficult as it seems, I tend to forget about my uniqueness most of the time. For example, I was watching a movie last night that took place in New York City, during the holidays. The Christmas decorations, the fast-paced lifestyle, the sounds of the street — it had it all!
The main character came out of the bar, wrapped in her winter coat and hat and was greeted by the perfect amount of snow flurries! I instantly thought, “Oh man, I miss that feeling of coming out of a bar, a firm buzz intact, the warmth of your face as the flakes seem to disappear on contact!”
But the following thought was similar to, “Kevin, how about walking! She walked out of the bar! She buttoned her own coat! Put on her own hat!” I had to almost laugh at my forgetting about all of the before mentioned uniqueness. But it’s true. I don’t spend any time thinking about what I can’t do! The list is too long and I ain’t got no time for that!
It’s all relative, right? I look at someone in a wheelchair, that has full use of their upper body like they are Superman! Hahaha, they only lost the ability to walk. Aww, that’s so cute. That doesn’t sound particularly kind or empathetic, I know. I also don’t attend to draw a spec of pity towards my situation. Ain’t got no time for that either!
We all have our own personal challenges. There’s no amount of money, fame, or ‘easy button’ to life that gives anyone a free pass to Easy Street. I was blessed with great parents that never put limitations on what was possible. I truly believe that it’s the root of my mental strength and positive outlook no matter how dark the horizon looks.
I have an incredible wife and the best care available. I try to live a high frequency life full of intention and faith. So despite all my baggage, I am going places!