MS, love, and my life

  mom with her closest friend, Karen ~ 2016  Last night, as I was taking a bath, I had a strange memory. I remember being a child and finding the place in her room where my mom kept all of her most treasured belongings. Glass bracelets from Nepal, necklaces from Africa, perfumes in dark bottles…so many beautiful and exotic pieces. Like my mom. Beautiful. Exotic. A treasure to pine for. I’m the youngest of five children. Our parents were raised Catholic, but my mom wanted to leave the church behind for us. She didn’t want us to be filled with guilt, shame, or judgements that she felt organized religion might pass along. She did, however, want to raise us with the beauty and kindness of the Catholic church. She wanted to give us the best parts. When I was little, I wanted to be JUST. LIKE. HER. I loved watching how others watched her. She was beautiful, quiet, patient, intentional, curious, and honest. When I was a teenager, these traits turned into: vain, abse...

beautiful  I've had a hard time writing lately. I feel hyper self-critical. I keep waiting for this to pass, but I've decided to try a new approach and see if I can just write through it. I went to the movies today. I decided to make things easy on myself, and park in the nearby covered parking. I've been going into this lot since I was a little girl, back in the mid-70's. I got to the downtown theater a few minutes early, and decided to buy a popcorn in Henry's honor, I guess. This was my first time at the Metro theater, and it was pretty cool, very new for Eugene, Or.  I don't want to say too much about the film other than Henry would've been out of his MIND over it. It was beautiful. I finally understood what my son always saw in Joker's character. He was the underdog, the freak, the one the other's didn't want to play with. Henry got this. He'd been stared at for looking different since he was a baby. People would often sa...

me and little man - from my book I just looked at the last entry I made, on March 19th, and I oddly finished with, "life is so unpredictable..."  My 14 1/2 yr old son, Henry, died on March 27th. Two weeks ago yesterday. Eight days after that last post.  My superhero side-kick, my little man who I worried over for his entire life, just passed away. I know I am still in a bit of shock, as just the act of typing out these truths makes me feel as if I might be sick, or need to run, or both. It's a strange thing to grow up always hearing that the worst thing that could ever happen to you is the loss of your child. You're supposed to be outlived by your babies, right? My biggest fear, as Henry grew older, was that I might die before him . I didn't know how anyone else could possibly love him as fiercely as I do, could advocate for his needs as persistently as I do, who could make him laugh when some idiot stared too long or said somethin...

so fucking close ~      I loaded my first book (ever) to be published on Amazon.com this morning.     I pulled it down shortly after. A temporary necessity.     There's something really humbling about things not going your way. It's like, oh yeah, it's not always up to me, after all. And from afar, that's kind of a cool way to see it. Only, I'm no where near afar. I'm smack dab in the middle of it. And from here, it straight up sucks.     Or does it? I mean, what if it had gone exactly as had hoped? And it was simply like switching on a light? Wouldn't that be a bit, anti-climactic for me? Well, I guess I'll never know how I would've handled things, had they gone differently.     Point is, my book was up for less than an hour. Luckily, I knew well enough to tell only one person, knowing he would buy it right away. We found out there were some bugs. First time self-publishing, not too big of a surprise....

It's a funny feeling when you can tell that something has run its course. Sometimes it can be extraordinarily painful and heartbreaking, other times it's as if a heavy load you didn't even realize you've been carrying, has been magically lifted. This is neither of those times. This is only me deciding that I'm done writing so publicly for now. From beginning to end, it's been an amazingly therapeutic undertaking for me. I like/hate that I decided to walk through my life so open and honestly. I like that I took on something that scared the shit out of me, and I did it anyhow . I hate that being so transparent allowed me to see how self-judgmental and critical I can still be with myself. I didn't expect this to happen, or I'm guessing I wouldn't have dove in. It's been a shit couple of years for me and those closest to me. I suppose we all get our turn with hardship at one time or another, right? It's almost ludicrous that the world kee...

me and my hair ~  Such a simple and pure concept. Honesty . And yet, not always so easy to attain. Because there are requirements, right? One has to know themselves well enough to know when they are actually being honest. How easy it is to float through life acting as if each and every thought, action, and reaction come from our clear intention! But more often than not, other things come into play. We might unknowingly be acting out of past hurts or unresolved resentments , oblivious to any ill intent on our part. And then everything unravels, and we are left bare and confused - what happened? And this is why pause is so critical. In order for me to have any hope of knowing my own motives, I know (now) that I have to step back when things feel messy. I have to get quiet. I have no business reacting without taking this critical step. Otherwise, I am more than likely to simply react. My pride will jump into the foreground and hustle to find a way in which I might lo...

me today ~ 11.15.18  It's been a big few weeks since deciding to turn my life around. Well, maybe it's not really  that dramatic, but I have changed quite a few things. I've changed my diet, my ideas around what I can and can't do in my new body, my attitude regarding my health and wellness, and my willingness to dive deeper into some messier old emotions. So yeah, I've basically changed a huge chunk of who I consider myself to be. It's wild that it's that simple to make changes, isn't it? One day, you just say to yourself, I'm ready.  In reality, the first week was pretty hard. I felt hungry, bloated, and irritable. I was eating more vegetables than I've had since I lived with my parents. No joke. I started weaning off the gluten, sugar, dairy, and caffeine. My stomach lost the bloat. My energy increased. Most importantly, my symptoms (pain, fatigue, and soreness throughout the day) seem to be milder. Oh, and I sleep like a r...