Do you believe me now?

With so much going on I've been told not to blog about anything personal. GO FIGURE. I start a blog in the Spring as an outlet for my angst, and my lawyers tell me to shut up! LOL! Well... I can still use it to highlight things I find important. And that's exactly what I'm going to do. =-) I think it's when you lose something that you find how important it truly is. Love is the most important thing in life. I'll be the first to admit that when I had it... I took it for granted. I thought that person would always be there, regardless of what was thrown at us in life. I've learned the hard way that it's usually not the way it works. It's been almost a year since I've been single and I've grown a lot. I'm hopeful that one day I might once again feel that twitter in my stomach, that anticipation of a telephone call, and the yearning to just see a particular someone's face. This past year has been so odd! With all the sadness I felt, all the changes in my health, and in my life... I've grown more in 12 months then I have in 40 years. Talk about an ass kicking 40th year! (I had it.)
My friend Fiona shared this blog entry this morning, and I fell in love with it. It's by this photographer named Brandon that walks the street of NYC and takes random pictures of people. Holding signs. This particular post caught my eye. I have friends that are dating new people, newly married couples head over HEELS in love, and friends that need to stop taking advantage of what they have actually have, and WAKE UP! I'm one of the unfortunate (and picky) ones that doesn't have that in my life. It's not hard to envy someone that has everything you once did. What sometimes IS hard to do is opening your eyes DAILY to appreciate the person in front of you. That sounds bitter, right? I don't think so. Life has a way of sweeping couples up... eating them alive, and sometimes it has a brilliant way of tearing them apart. Read this. Let me know what YOU think:

"Yesterday a very nervous girl stopped me on Broadway. "I always tell my boyfriend how much I love him," she said, "but he never believes me. I was hoping you could help me send him a message."
"On the blog?" I asked. She hesitated, then a

nswered: "Yes."

I told her I couldn't do it. "I'll take your photo and email it to you," I said, "but I can't share it." I explained to her that I have a hard rule about not photographing people who stop me on the street-- otherwise the requests would quickly become unmanageable.

In addition to this, I get so many emails from very young couples asking me to document their Greatest Of All Loves. They normally express their relationships in cinematic terms, saying things like: "It took me 15 years, but I finally found my soulmate." Or "Even though we go to different high schools, the strength of our love has allowed us to persevere through the hardship. Please take our photo."

I think I join the rest of the adult community in a little eye rolling, along the lines of: "Yeah, yeah, been there. Don't worry-- the hormones will level off." But while editing the girl's photo, I realized that I've probably been a bit too dismissive of these sentiments. Young love is a huge part of life. Sometimes it evolves into something steadier and longer lasting-- more often it doesn't. But few things have the power to consume us so completely.

So here's my tribute to that experience. To the recipient of this message: Your girlfriend really, really loves you."

LIFE... at ALMOST 40

I'm hitting 40 on Friday. It's so weird. Part of me still feels like that kid walking around the halls of Deep Creek High School. A bigger part of me has been all over... VA, NYC, FL, HI, the drive across the country and of course my years in California. I've lived a wonderful life. I couldn't be a luckier guy. I'm surrounded by wonderful family, and friends that have become just that. It's funny... I remember having a dream as a teenager that I died before my 40th birthday. I guess it's a good thing I'm on bed rest, right?!
My skull was fractured in three places, blood hemorrages, and my frontal lobes are messed up. (according to the neuro...) It's going on three weeks and I'm still on bed rest. A couple of friends of mine had planned on skydiving for my 40th. That's not going to happen this coming weekend, but I figure the sky will always be there. The one thing that I'm SURE of is my faith. I'm just happy to be living today.
I've been reflecting a lot. Over the past year so many things have changed. Over the PAST 20... good LORD! I've accomplished a lot this year. I went back to NYC and saw Chris, Fi, Josh, and Aaron... saw the Space Shuttle, met Carl... one of my best friends in the world, came to peace with some brothers from High School, walked in the Parkinson's Walk, and I've become a lot less angry. Being diagnosed with Parkinson's 2 years ago... geeesh. MY LIFE CHANGED. The medications, the visits, the weight loss, the emotional pain, and I lost a relationship. I'm still working on the anger issue and trying to manage my thoughts. The medications I was on for Parkinson's really messed me up. Not just physically, but emotionally as well.
These days... I'm taking everything as it comes. I'm just trying to deal with everything and not have it hurt other people in the process. Dying should be a natural thing. It NEVER will be. The one thing I do have is memories. WONDERFUL memories.

LIFE, Death, and LIVING.

Hmmm. I hate putting out bad news. I have tried my best to stay positive and optimistic over the last couple of years. I've had my moments for sure, but I think over the last 6 months I've done a pretty damn good job of keeping focused on the things I wanted to accomplish. I know I've had my moments... Ya know... simple stuff. Finding a cure for Parkinson's, Cancer, and the end to human suffering in general. SIMPLE stuff. I can't anymore. Now I'm going to try to alleviate some of the suffering of my family and friends. I'm OK peeps. Damn. I love you all so much. The outpouring of support is wonderful. But stop with the "I'm sorry's" and the "I don't know what to say" bullshit. I'm still me. Tell me to FUCK OFF. That's what I expect and appreciate! I'm not a withering flower. I'm a man that has lived a WONDERFUL life. I've had some pretty amazing experiences. And I think instead of blogging about what I'm going through... I think from this point forward I'm going to share what I've LIVED. Thanks to Rusty and the love we STILL have for one another... I spoke to him last night at length and it was like we were sitting next to each other having coffee. I miss him so much. He changed it in so many ways. He made me LAUGH. Made me cry many times, but I'm sure that was mutual. I certainly made him cry last night. I followed Rusty to San Diego and Hawaii. It wasn't living in those places that was wonderful... it was the friendships.... the OHANA... that made me grow as a person. Shannon, Larry, Carl, Tom, Scott, Chris, Fi, Josh, Aaron,  Megs, Bridget (Rusty's mom), Kris, Miss Pat, LINDA, Lei and Cory, Jamie, Glenn, JACKIE and Mari... The people that are close to me... you make my life RICH. There have been times in my life when all I cared about was making money, having this and that. The perfect truck/car, the perfect house, the perfect boyfriend. I HAD all those things. I made mistakes like any man does. I got sick and lost all of it. And blamed it on the illness/this and that. Truth is... MY reaction to what was happening to me... that's what ended two of the the most wonderful love stories ever told.
I look back on my life now and the memories really do make me smile. Even the bad shit that I/WE went through... can't help but laugh now. It's all so trivial. I guess facing something like this makes the everyday stuff SO not important. I spent so much time over the last couple of years ANGRY. I took it out on some pretty incredible people. I'm making amends... somehow. Through letters. One person that took the most abuse was Wayne Gilbert. He's an amazing man, and from what I understand he's becoming the man that I knew he would be. I made so many mistakes in that relationship, but there was never any doubt that I loved him completely. He was my best friend, and my partner. I'm proud to say that now. What happened between us is private. But I want everyone to know that it was MY fault. I hurt him in a way that you should NEVER hurt someone you love. And I did love him completely. Still do. Regret is something TERRIBLE. I just know that things are the way they should be. And I can live and die with that.
Petunia. GEEEESH. That little girl!  I've NEVER been so loved in my LIFE by a man the way she loves me. She's been with me through some of the darkest hours of my life. She's with my parents and she's staying there. She's my Dad's best friend, and my mom loves her to death. I finally have no one to worry about. Meaning: Whatever happens to me... I know now that the people I love most, the dog that has been by my side through everything, and my family will be alright.  My nephew Bobby makes me proud every single day. Just bought his first house at 18. Working for a company I have faith in. And he's taking care of my sister. That's all that's mattered to me.
I can finally "Set Fire to the Rain." And be ok with that.

I'm sad. Sad that I don't have Parkinson's. I know that sounds crazy. But what I've been through over the past year is crazy too. I'm dying. Slowly. Quickly. Who really cares anymore? The fact is I'm dying faster than most of the people reading this. I'm not even 40 yet. And I'm PISSED.
Two years ago I was diagnosed with Parkinson's Disease. I can go though all the ins and outs of the prognosis, but the baseline is I was given a diagnosis. PARKINSON'S. I started relating to Michael J. Fox like you wouldn't believe! He was my new best friend.... my hero. HE STILL IS. And as long as I'm alive I will continue to raise money for his cause.
I have ALS. With Severe Cervical Stenosis/Myelopatathy. I've been going through tests and I'm not happy. Not only do I have the ALS... but I have severe narrowing in about 9 spots in my spine compressing the nerves. My neuro doesn't think there's a neuro surgeon that will touch my spine. So... I'm dying. AND... I need to make decisions on surgery. I'm missing someone tonight. PERIOD. Decisions need to be made. I don't think I've EVER felt so alone in my life.

NYC, Unity Walk, Space Shuttle flyover, and friends!

I leave tomorrow with Spencer for NYC for the Unity Walk. I can't tell you how excited I am. It's going to be great seeing some old and new friends, and visiting the city that meant so much to me in my late 20's. Those of you that actually know me probably remember what a fanatic I was about NASA and the Space Shuttle program. I even went to Space Camp/Space Academy! Yeah... I was one of those jockish preppy nerds in High School! Don't HATE! ANYWAY.... The space shuttle is flying over the Statue of Liberty on Friday morning at 9:30. Josh and I will be on his roof in Battery Park with cameras in HAND! I'm so flippin excited!
AND... I finally get to see Chris and Fiona! Chris and I have been friends for years. He's from England, and is coming in for the walk. We're all meeting up at noon on top of the Empire State. This all seems like a HUGE dream to me. I'm knocking out quite a few things from my bucket list this weekend thanks to Spencer. And of course... Josh. I'm staying with him and his partner this weekend. LORD. We've been friends since high school. Any time spent with Josh is a good time.
I will post pics from the walk, flyover, and the debauchery as soon as I can! I have to PACK!

Gratitude

My best friend Carl is a Navy Pilot. He's become one of my closest friends, and helped me in so many ways. He's helped me regain my faith by showing me daily what it is to have a REAL relationship with Christ. The last couple of months have been horrible. The break up with Wayne, the disability fight, watching my folks get older and knowing I probably won't be around to take care of them, the DAILY pain that I have from rigidity and not knowing what the future holds for me. Today a jet flew into an apartment complex here in Virginia Beach. Luckily... he wasn't flying, and is safe. But it was a reminder that life is precious.
My posts on Facebook recently have been morbid and sometimes quite depressing. I'm not dying. I'm living. Everyday that I wake up and can walk is a blessing. I have days where I can't even move without pain. Yes... I get frustrated, depressed, angry... it's normal from what I've been told. I have worried too long about waking up, taking a look at Petunia... realizing I can't get out of bed. I've worried about being in a wheelchair and not able to take care of myself. Been worried about being frozen... hearing everything around me but not able to communicate. Been worried about my family, boyfriend, my friends, and Petunia. I spent so much time worrying about things I couldn't control... people that really mattered, and people that didn't. (And a dog that will be taken care of regardless of what happens to me. She has so many people that love her, and she's going to be just fine as long as I keep fighting.) Today... watching the news of the plane crash I realized that one of the people closest to me works, fights for our country everyday, and puts his life in jeopardy every time he goes to work. His family, my family, our friends... are all so proud of him. Today I realized that he might not have come home from work. Craziness.
Shit. For that matter... I could walk up to Barnes and Noble and get hit by a car. All this worrying doesn't matter anymore. One of the good things about what I've gone through since December is that I've realized who matters and who doesn't. Energy spent of people that don't really matter anymore is wasted energy. Energy that   I need to conserve for living my life to the fullest. For the days that I can get out and do things... take Petunia for the walks she deserves, spend time with my folks, and relish in the company of my friends that have become family. Time wasted sucks. I'm heading to NYC with Spencer on the 26th. I'll be walking in the Parkinson's Unity Walk and spending time with some friends that HAVE become family. I finally get to sit across from Fiona and Chris! Chris and I have been friends for years. He lives in Britain, and we share a very common history. I'm watching him as he makes the transition from a single stud to a married dude. It's been wonderful, and I can't wait to meet the love of his life. I also get to finally meet Roger and Rosie from Florida. Roger also has Parkinson's. Him and his wife are a HUGE inspiration to me, and I can't wait to meet them in person. I've connected with many other Parkinson's peeps... ALLIE! It's going to be a very inspiring weekend. I'm staying with Josh Stigall... and I'm SO looking forward to it. Plus... Spencer and I will be sharing the experience of the Unity Walk together. Spencer has been a part of my life since I moved back to Virginia Beach in 1998 after my break up with Ken. We have kept in touch over the years... on and off. It amazes me the way God pulls people into your life when you need them. He's strong, inspiring, sensitive, sensual, and my best friend. He teaches me something about life every day.
So. I'm grateful. I may be dying... slowly. But I'm also LIVING daily. That's what matters. I'm surrounded by some incredible people, and my journey gets longer and more exciting with every thing I check off  my bucket list. Some people NEVER have that opportunity. I'm going to end this with something my best friend Carl wrote me a around Christmas. I was scared and BEYOND sad. I thought I had literally lost everything. Scared of a lot of things back then. One of those things was living. The future isn't promised to anyone. It's one thing to plan, and put things in order. (Which I've done...) But quite another to sit back and worry about a future that hasn't happened yet. This one quote from my best friend reminds me every day that things are going to be okay. The email he sent me that day gave me strength to live one more day. And that's how it's been ever since.


"Worry cannot coexist where faith is trying to as well. Once you pray, be confident and give it to God. God will meet you where your faith is. HE is not putting you through this as punishment. You are here to be a blessing to someone else. God still has a plan for you and he won't take you from this Earth until that plan is fulfilled. The Will of God will never take you where the Grace of God can't protect you."

THE WILL OF GOD WILL NEVER TAKE YOU WHERE THE GRACE OF GOD CAN'T PROTECT YOU.

Pretty wise stuff.

It's funny. The "Will" that my friends and family see... and the "Will" that exists every day.... Trying to pull those two guys together without hurting anyone is hard. I'm tired. Tired of doctors. Sick of hearing what may or may not be wrong with me. It's been a very LONG two years. FUCK... it's been a very long 7 years. Knowing that I probably never had a "massive stroke", and the changes that had on my life and the lives' of the people I love... HURTS. I'd rather go down thinking that what I went through... what I put my folks and Rusty through.... geeeeeesh. If we I could have had an accurate diagnosis all those years ago who knows where my life would be now. Where Rusty would be. Where my folks would be. The "what ifs" can go on and on... and are the things that could mean life and death for me now.
Most Parkinson's patients go through a period of diagnosis. Where you could have MS, ALS, Hunnington's, blah blah blah... I thought I had it easy. LOL! What makes me different than the next guy? FUCK THAT! I'm Will damn it! Things are supposed to be different. BECAUSE IT'S ME! I'm so sick of going to doctors. I'm SO sick of taking meds. I'm SO FUCKING SICK of hearing bad news at every turn. I've lost so much over the last 2 years. I moved back to Virginia to pull my shit together... to support myself without someone else attached to me. To move past my "Rusty" years.... rediscover myself and really start living my life for myself. Linda once told me that I would never be happy until I could get past the PAST.
PART of that past is the stroke. I'm so angry. I'm not even 40 yet. I should be planning for my kids education, looking forward to retirement, and loving the fact that all that I worked for was coming into place. I've lost EVERYTHING over the last couple of years. Walking away from Hawaii..  From Rusty. From the life that we built together. From my best friend. Geeeesh. I don't regret that at all! LOL! It made me grow in so many ways. I just see my life now so differently than I did then. If only I could go back and SHAKE myself. WAYNE!!? That's another story entirely. I've thought many times over the last couple of months that God was playing a joke on me. I was being PUNKED. I've never in my LIFE loved someone so completely. Evenly. Without question. Only to find out that he was human too. GOD DAMN HIM! Looking back... I take complete responsiblity for what happened between us. He was holding the world on his shoulders, and trying to take care of me at the same time. No one can do that. NO ONE. Gilbert is and always will be one of my heroes. 47th street. Neptune Festival. Jazz nights at Neptune Park with Levi and Lane. The camp ground. Petunia. THE LAKE. Period. The happiness that I felt far outweighs anything negative that came out of that period of my life.
But here I am now. Trying to make sense of a life that doesn't make ANY sense at all. I'm tired. I should be at a place in my life where I should be taking care of my parents. Being the mentor to my nephew... to be the man that he used to look up to... and able to support my sister the way the men in her life have failed to do. Here I am at 4am on a Thursday morning looking back at the destruction of my life.
And then... there's my faith. My Grandmother told me years ago that even when things seem really dark... If I closed my eyes REALLY tight... I'd see some light. And that would be God. Grandma Pillar was a wise woman. I miss her like crazy because I know she'd have something to say about all of this. Something sweet, but stern. I'm a control freak. I get that from my mother. I can't control anything that's happening right now. I'm scared shitless, and I don't know what to do anymore. Thankfully I have people in my life that love me enough to put up with my bullshit. Spencer (ohhhhhhhhhhhhh Jesus, YES.... SPENCER!!!!) came back into my life and has been absolutely amazing. That's another story all to itself... but hopefully it will be a great love story. Carl and Tom are my rocks. I don't know what I would do without Krystal and Domonique. My day to day friends like Spencer, Carl, Tom, Dominick, Jamie, Em, Chris, Fi, Megs.... you guys give me strength. My family... no matter how much I push.... you're always there. Blood and otherwise.
I'm sorry. I'm sorry I've pushed you guys away so many times. I don't know what is going to happen with all of this. Signing Advance Directives, Living Wills, etc.... it's not something I want to deal with much less think about. Worrying about what's going to happen to my family after I'm gone... it's not something that a 40 something should have to deal with. I'd much rather be planning trips to London... skydiving in Hawaii... surfing in Australia... hiking in Colorado... watching the sunsets that I always LOVED in San Diego off of Sunset Cliffs. Now I worry about what's going to happen to my CONSTANT companion. Petunia has come a long way. From Hawaii... to California... to Virginia. That little girl has gone through hell to have a happy home. And I've given her nothing but a hella lota drama. She worships me, and I adore her. I may not (or who knows... may HAVE) have found true love with another man... but the one thing I'm sure of in my life is the love of Petunia.
I don't know what's going to happen from this point forward. I'm TIRED. SICK and TIRED. Not looking for PITY (and yes... I'm thinking of a certain SOMEONE), but maybe some empathy. Those of you that are close to me know what I've been dealing with, and KNOW ME. I may be dramatic at times... yes. But I don't want anyone's pity.
Ok. You guys asked for it. My first bullshit free blog. I won't go back and change anything. I'm tired. Not sleepy tired, but sooooooo drained I could hardly stand if I had to. I'm grateful. I'm humbled every day. And I'm feeling bad for writing half the stuff I just did. (It's the Catholic boy in me... ) All I know is I need peace. Peace of mind. And that's what I'm praying for as I go to sleep this morning. I wish I could KNOW that everyone in my life was taken care of. PERIOD. I'd be ok with anything.

Listening to some old school Nickelback... geeeesh. Why do I do this to myself? LOL!http://www.youtube.com/watch?feature=endscreen&v=GP7zpdwo3Xo&NR=1