There's more to May than flowers and all things good and witchy. May is also ALS awareness month. It used to be, come May 1st I would be wracking my brain with something special we could do to brew up some awareness. Some ideas I would come up with were inspiring and successful, some not so much (if you've followed me long enough let's not remember those together) :).
This year, I don't feel the same pressure. I, of course, want to spread awareness for ALS; but like Earth day, it's not something I do one day or one month. We live ALS everyday. We share awareness, every time we share our lives. Even if it's not directly related to an ALS statistic that I probably copied and pasted from a website.
So here's my wild idea for ALS awareness month. KEEP DOING what we ARE ALREADY doing.
I find sharing our lives, our truths, and our normal's; to be the kind of ALS awareness that leaves an impact, because it's not some stat that's probably not even really true anymore. How many people were told they could expect the 2-5 years life time expectancy? It's just that these statistics, couldn't possibly reach everyone. Some of our ALS friends who were diagnosed same time as Steve are no longer here. Some of them are still walking, talking, and breathing 100% on their own. Some friends were diagnosed months ago and have already left us, and some 15 to 20 years ago and they are stronger than ever. There is no fact that encompasses this entire group of strong willed individuals, aside from one thing.
Everyone gets a choice on how they want to live. Do you want a feeding tube? Do you want a catheter? A trache? A vent? Do you want to deal with the complications that no doctor could predict could happen do you? It's often that very thought that helps all of us knowing someone living with ALS. They get a choice how far they want to go with this. Some choose no support, and to let the disease run it's course. Some choose to fight with every ounce they have inside of themselves, and use all things available to aide in continuing to do so.
There is no right or wrong way to live with ALS, just as there is not right or wrong way to live without ALS. It's all our choices on how we want to handle a circumstance life hands to us. It wasn't a choice of any of these brave souls, to have to face a terminal illness head on; yet everyone I've met does. They take the information handed to them, they think on all the ways in which life with ALS will impact them, their loved ones; and they make the choice that's best for them.
There's so much we can learn from all the fine folks living with ALS. Aside from the obvious reminders to be thankful for our health, ability to eat, breathe, talk, speak, move, etc. My number one take away: ATTITUDE MATTERS MOST. Everyone I have come in contact with living with this disease, has an attitude of acceptance. An attitude of understanding that life is going to bring you unseen circumstances and your choice to make the very best of it, matters. An attitude of accepting that you have no idea how long you will be on this beautiful Earth, one we all truly should have. I may not have any diagnosis dictating my life, but I have the understanding that any day something could happen to me. Nothing is for certain, and taking everyday as a blessing, is my favorite way to honor all of those putting everything they have into living for another day.
Even if that day is in bed, unable to move a muscle, unable to speak yet through tired eyes, that only work for a few hours a day, having to be turned in ways your body no longer understands as normal, to have wounds cleaned. To have holes that have been in your body so long, they are now stretching beyond medical comprehension (ie: trache stoma, feeding tube, urine catheter). To have a list of complications so long that doctors begin to look at you as a medical marvel. Despite all of that, Steve (amongst so many others) wakes up every day greeting me with a smile. Even if I'm meeting him with a snarky, "You interrupted my meditation instead of a good morning." Always a smile to start his day, filled with gratitude for another day to be here. Another day to participate in this life in all the ways he has energy.
How then can we spread awareness for all of those living with this cruel monster that is ALS?
My answer. Make everyday sacred. Even the days where nothing goes right, the days you feel so tired you can barely put one foot in front of the others, the days you discover a slug ate half of your favorite plant, the days you burn breakfast, lunch, and dinner, the days you loose your job; etc. Everyday no matter what happens that day IS sacred, because you're alive. That's enough.
So for this month and the rest of my life, I will do the best to make everyday sacred. To choose gratitude, and acceptance no matter what is presented to me. I will do everything I can to treat my health as a blessing, and lovingly care for myself because my body is sacred. For everyday I wake up and can take a breath of air into my lungs without a machine, I will remember what a blessing that is. When I stand up out of bed, I will give thanks for muscles/nerves/bones that support me. When I eat, I will choose foods that nourish me, and give thanks for the ability to chew, swallow, and absorb the nutrients I'm taking in. For everyday I get to use my voice, I will use it for a way that honors those who no longer have theirs. Because life is sacred, and if anything these beautiful beings can teach you, is to live everyday in reverence of it.