I woke at 3 am like I do every God-forsaken morning. I am kidding. I like being up at this hour. I like singing on my ukulele as the sun rises. I was looking for the chords to The Drugs Don't Work by The Verve when I bumped into another... Continue reading

Emily Hayward was a fighter, and so much more. She was a fighter, lover of so many things...she taught those of us who know we are dying a bit sooner than the rest, how to live despite that knowledge. She was a fighter and she's changed this world. I know she's changed mine. Continue reading

Twenty three years he spent with sand in his mouth, connecting in ditches, connected to bodies trying to separate them from their humanity. Almost dangerously close to the way the enemy did. He could only get close in pieces. He had to separate, in order to live. It was up... Continue reading

The world is off without you. Anything with imagery of water and drowning sends me into my outward place. My safe space. It's not as much safe, as just empty now. No one can touch me, reach me. Just the frequency delivered to my ears, with your words and your... Continue reading

Newly out of the hospital, enduring #steroid #withdrawals I've had the biggest #multiplesclerosis epiphany ever. The last ten years have been so heavy. God they have been so dramatic! Rightfully so! #Quadriplegia is a heavy prognosis. I was rushing to PROVE so many things. That book was to prove to... Continue reading

Adverbs My fingers feel frenetic. Something is pouring through the tips. I’d say every page has been kissed, by them. But they’re not always kind. “IF your life is crushing you, make it into a novel,” he said. So I bled. And I bled. Again and again. Taking his word... Continue reading

SO I stopped writing about multiple sclerosis for a while. I just didn't want to anymore. I am more than MS, and politics and working towards peace took precedence. Until THIS happened. I read two books and wrote 200 pages of my book in one day. I also did tons... Continue reading

Because there's been a great deal of discussion, yes About the properties of man I mean, animal or angel You were carved from bone, but your heart is just sand... Continue reading

Those who do… Where did my sunshine go? I haven’t written in months. Where’s my last post? Was that a question or a boast? I give him the stink eye and keep working. Always thinking. They buried her in September. So I’d feel the chill of December And trace translations... Continue reading

I can’t say everything I need to say about Jessi in four paragraphs. She deserves a book, a trilogy even, but I can say a few things about her that will connect to YOU and your illness. Jessi WAS afraid of her illness. She knew that she basically didn’t have much of a chance in that last year, as she walked around with a breathing tube running up her nose. She was so beautiful, tubes or not. But Jessi refused to feed that fear. Instead, she fed her art. She insisted she wasn’t afraid and just kept plugging away, doing anything she could to mold this UGLY into something BEAUTIFUL. She had music sessions with Linwood where they created music (Linwood, I pray you really do see it as your job now to go forth with that music. You rock. You can!, no pressure!), art exhibitions, decorated the hospital rooms that were bare for other patients, won the hearts of nurses who are now, according to Linwood, Those Darlins’ fans. Listen to her. Look at her art online. Learn an instrument. Create. Turn this ugly monster of a disease into something beautiful. Just like Jessi did. Continue reading

I didn't think I had anything to say regarding Jessi because I am still so FEELING it, but there is one thing I have to point out - Jessi didn't "lose" her battle. I keep seeing those words, "Jessi Zazu has lost her battle with cervical cancer..." I know what people mean. I know there's no harmful intention, but I also believe that words matter. Jessi beat cancer. She shone through it and it didn't stop her from creating and blooming, it made her go harder. Bigger! Jessi made it art. She created feverishly until the end. Her body isn't here, but she's still everywhere... Continue reading

I will admit that you're the closest I have come There's just something about you that I trust I didn't say but I was sad to see you go You went back to the ghost, I went back to what I know Seems like every night, meet my friends at... Continue reading

"That's the way it is love...nobody can tell you how to build. Your house of seven swords." ~V.C. Continue reading

There’s an ancient Chinese secret - a parable of sorts. Wait, it may not be specifically Chinese. It’s an Asian parable of sorts, but I don’t know where exactly it originated from because someone told me and, like I’m always reminding people, I have multiple sclerosis brain, I can’t remember... Continue reading

Curled up on the big comfy chair in my office, stuck in this song for hours. Feeling way too much. Sometimes that is the closest we will ever get ... to the things we cannot touch. She sensed my connection to music. Said I used it to connect, to the... Continue reading

So I read that we need 18 hugs just to be emotionally on par. To be really Zen, hug everyone I presume. So I had just woken, followed Tony to the kitchen and tried to give him a solid three hugs to leave the house with. I also figured out... Continue reading

Music is so important to me. It moves me. When you're losing your mobility, that is so much bigger than it sounds. I never believed I'd hear a song by chance. They inspire me too much. An intangible touch that sometimes pokes me to move, sometimes it's a much needed... Continue reading

The ugly truth about MY multiple sclerosis is summed up in this picture. My husband is a fit, sexy, cyclist and his life is about riding. And me. And us. He has a pair of compression socks to keep his feet and the blood moving. I like the name. Compress... Continue reading

My namesake. US. A million stories whispered, secrets laid bare, and dances at dusk. My namesake is US. That is where I come from. Hence, I honor you. As best friends do. In many ways we felt forsaken, abandoned, as orphans do. In hindsight, we were spoiled, we just never... Continue reading

She's right. I can't run, but I can dance. Watch her... Continue reading

Trying to tiptoe down the stairs. With the heat, and the light, it was like I could see the air. My feet are bare and dancing for you. In hopes to leave you in your slumber. You have been in my life for eight years and three days. Don't tell... Continue reading

Oh sweetheart, just remind yourself as you wipe your tears That none of this ever mattered. Dreams are just glass. They trick you into reaching. Wanting the universe and romance ...leaving us shattered. Fueling fear. Fear is the opposite of love. Remember that and you will rise above. The glass.... Continue reading

Anyone who says they know what causes multiple sclerosis is WRONG and should be banned from publishing such a proclamation, and any one person who claims losing 100 pounds cured their MS is sadly mistaken. I am a size 0-2, have eaten a clean, MS diet since the onset of my d/x eight years ago and my most dangerous lesion formed 3 years ago. I am happy for this woman, but so sad when I think of the day she relapses. That aside, you must know there are four different types of multiple sclerosis. That woman is NOT you. Focus on your individualized treatment plan and be very mindful of a healthy lifestyle in the meantime. This will allow you to improve your quality of life and subdue your symptoms for longer intervals of time. However, putting stock in articles like this are incredibly dangerous. Continue reading