Most every moment is filled with excruciating pain. The kind that’s angry and filled with rage. It’s red and burning hot, it sears and it’s stabbing. It’s pulling and clenching every muscle tighter and tighter and bones fall in and out of place if I move the wrong way. My stomach is twisted so tight and I yearn for water and food. But some times I have moments where all the pain doesn’t matter. It doesn’t matter because I’m so blessed. I’m blessed by love or beauty. Maybe I can only appreciate these magical moments after staring at the world as if the entire world is black and grey; like some kind of topsy turvey upside down world. It is the kind of world described in stranger things, saturated of color void of any beautiful sound except for searing buzzing only my monster is pain. Then, suddenly just when I feel dazed in some old zombie film it’s splashed with color and just for a minute I feel whole again, me again.
I want to share about a really special moment that happened at Christmas. My Grandpa came over to give me a hug, the biggest gentle hug. Then he looked at me reached up grabbed my hands with his thick fingers and my tiny fingers sad inside his. He just stared as if we had both worked up all our might to get here, to this one hug. Now all that mattered in the room were his eyes. His big blue eyes filled with tears. And this man, I’m not even sure I’ve seen him cry, this stro Navy man, but a family man none the less. He squeezed me and made sure I knew how much he loved me. And my eyes too, were filled with tears as I let him know how much I loved him. Time just stood still as we held each other. I joked about how old we are getting and how nice it is to see the youngsters playing. My grandparents have two new great grand babies and I have two new second cousins. It was a magical Christmas and though I experienced a lot of pain, it was drizzled with many magical moments.
Sometimes pain is reminder of where you came from and what else there is. Moments of pure magic and peace. My grandparents have supported me through this illness and every other part of my life They are two of the strongest people and often I get my strength from them.
When I went home I was in pure pain again but I had my moment to hold onto. Like a giddy kid on Christmas Eve or like a kid who just found out about Neverland. I had my moment to get me by.
My decision to keep on living despite how much pain each day brings is not an easy one and it is certainly a conscious one. Every day I must choose to live for the moments.