May is ALS Awareness Month.
Last year? Boooyyyyy HOWDY was I aware of it. It struck me as poetic timing, the month after my diagnosis was Awareness Month. That’s when I really began to tell people about my own diagnosis, that’s when I made my universe aware that this was happening. I became an expert in describing what it was and why it was bad and why it was going to be okay, really.
It was a harried, confusing time for everyone, and a month of big decisions. I still hadn’t decided to sell my house yet, or wait until my symptoms made it necessary. I decided ultimately to move on the sale, thinking I’d rather have the ability to make the new house mine than stick it out. Which is good, because already it’s impossible to carry things up the stairs with both hands. I ask people to carry things for me, when they can. Even emptying the litter box and taking it downstairs is a trial. So I’m very glad I started when I did.
This May, I’m aware of ALS. I’m aware of the changes it’s made, both in my physical ability, the outlook on certain things, and the way people interact with me. I’m aware of the strength I’ve lost. I’m aware of the independence it’s taking away from me. I’m aware of the sudden burden of time, watching it slip away, wanting to do as much as I can with it while at the same time wanting to do nothing at all and just rest. I’m aware of my friends coming to terms with the disease for themselves, and either stepping up or stepping down. Both are fine. Everyone carries this weight separately, and I’m proud of people for realizing early that this is too much to carry – I’d very much rather them know this now, than force themselves to hold up until they break. And suddenly the support beam below me is gone. It’s better for both of us to realize this now. I’m aware of the amount of freakin’ PAPERWORK involved with dying. The diagnosis should really come with an administrative assistant. Danielle is helping and doing a fantastic job, but it’s not fair for her to have to deal with the bureaucracy AND the emotions.
I’m aware of changes. I’m aware that I don’t have as much time as I’d like to think. 10% of people with ALS live longer than 10 years, and I firmly believe that I will be among them, but I’m no longer so certain that I WANT to be around that long, depending on the decline.
I’m aware, and in awe, of the love and the support that came seemingly out of nowhere. I’ve never in my life been so inspired by the people around me, overwhelmed by the willingness to sacrifice for me, so many questioning voices: “How can I help?”. I’m aware of the amazing group of individuals surrounding me, each with their own talents and lives to live, but somehow willing to reach out and be part of my problem. Willingly burdening themselves with a battle they know is already lost, but wanting to make the loss a little easier.
I’m aware of how amazing my life really is. And I guess, in a fucked up way, I’m thankful for ALS showing me all of this. I’m aware of how bizarre that seems. I mean, I’d still be very very happy if it fucked off forever, but I guess if it’s gonna kill me, the least it could do was show me a little mercy and awesomeness. Most people don’t get to know how much people actually care for them, and what impact people have felt from their existence. I’ve been shown that, and told that. I’ve heard many of the lovely things people say at your funeral, while I’m still alive. And because of that, I’m very aware of the need to show people appreciation and love while you’re still around. How important it is to tell someone without prompt that you adore them and you’re glad they’re a part of your life.
I’m aware of how cheesy that sounds.
Today, I’m aware that I am a different person than I was a year ago, and will continue to change, but I will cling desperately to my optimism and humor and spit in Death’s face. Well, more of a girlyfight slappy flailing, spitting is gross. Eventually I’ll welcome her, but for now, I’m aware of so much more life that needs to be lived and so many more words to write. I’m aware of how much left there is to live.
Thank you all for being a part of it. I love you. I hope you’re aware of that.