So yesterday I got a message from someone asking me, "How do you outwardly appear so happy but also share the struggle you have with ALS?" This person explained to me how they had been a caregiver for someone with ALS and that they struggled with this everyday; trying to find joy in the rubble as they put it. They then asked, "How does one know if you're being genuine when you share one story about your struggle, and in the same day you're posing with your paintings smiling?"
So this is a fair question, and I hope y'all don't mind that I tend to blog from feedback. Honestly, it just makes me think if one persons thinking it, I'm sure others are too; so why not use it as a prompt as to what to blog about. *Also note, this person did not have bad intentions, so no negative thinking towards them; they asked a question from the heart and I appreciate it.
You all know this by now, that I don't like using overused quotes; but sometimes they are so relevant I can't help it. So.
"Not everyday is good, but something good happens everyday."
This quote is what first came to mind when I was reading this message, but it's really much more than just these simple words. Truth is that yes we are in the thick of it. Steve's been on this journey for 5 years this August, and when I think of the complications he's faced it astounds me; his beautiful spirit has not been broken. I sometimes look back and wonder how we've made it through each trial, because this one currently seems like it's going to break us.
We've had this sore now for a month and a half, and we've made strides in healing it mainly by doing wound care almost everyday. That's excruciating pain for Steve for hours at a time everyday. It's exhausting for all involved, while also encouraging. As Steve moves more, the movement becomes a tiny bit less traumatic each day, his lungs are showing signs of clearing for the first time in 4 years, and the sore is healing. Nothing will teach you patience quite like waiting for a sore to heal, they take time.
So as we are making progress we see a light at the end of the tunnel when suddenly Steve gets a hemorrhoid. Steve already having anemia of chronic diseases, when he looses any blood his body wants to shut down. We went a tiny step backwards on the progress of healing because his body had to use all it's strength to rebuild blood. (Note: If you're pALS has this, pure absorb liquid iron is your secret weapon).
So again, we are hit. It's hard not to give in to that defeated feeling, but this is the most important thing, is to not give in. The truth is yes these days are hard, and we are feeling a bit weary, and poor Steve has no energy to even type on the tobii, to play the stock market, or even follow his sports like he loves. One thing it can't take however, is the joy that Steve's still here with us. He's still choosing to battle this disease and he's doing it on his terms; at home in his bed surrounded by pups, birds, friends, and family. He still gives me a smile every time I walk in the room, and he still gets excited with every bird that comes to visit. Truth is, as long as he's still alive, I'm thankful. As long as he's still able to smile at me and give me that twinkle in his eye, of course I will still find joy in my life.
If I don't find a way to refuel everyday for Steve, I wouldn't be able to do this job. It's hard and it affects me, you may not see it; but take one look at my skin and it shows. Of course it's hard to see the one you love most struggle, but it's also inspiring and a poignant reminder. How could I not see everyday as a gift, and find the beauty all around us everyday? How could I not, when him being ALIVE today is the biggest gift of all. He still smiles after we finally get him comfortable from moving and says, "Thank you for helping me I love you." How can I not see the beauty in that?
So yes, while I feel the struggle of this journey, I also feel the gift. The gift is I have my hands, legs, eyes, mobility, I can breathe on my own, I have a voice, I have talents that sure as hell don't deserve to be wasted,... So yes, I will share how much we are struggling with this situation currently and then I will paint it out (or whatever activity I choose that day). Some days all I can muster to be thankful for is another day around the sun, and that's okay. Trust me the days you don't see smiling photos with me covered in paint are the days, I'm just sitting and starring at the fish swimming in my pond offering thanks for just making it through the day.
I hope this helps some of you in the struggle. I know it's hard to find the beauty because some days it's so hidden in the muck, but t's still there.