The Song That Never Was - Andy Whitfield Tribute

As my battle with Systemic Lupus seems more and more like a lost cause, what I reflect on most are the things I most wanted to do that I fear I won't be able to. At the top of the list is/ was a secret music project. After I found out about the movie "Be Here Now" I put the page in front of over 40 million "Facebook" users on various pages because cancer has touched everyone. I did several cancer fund raisers before I was so completely robbed of my health that at 42 I find myself on oxygen using a walker just to get to my bathroom. I never smoked a day in my life. I was very fit, which is probably what has kept me alive this long. I digress.

I read an article written by Andy Whitfield's Wife and it moved me in a way nothing has for a long time. I had to do more for the film. Andy Whitfield was born on my Mother's Birthday and passed away on my Birthday. I felt obligated in some way to write a song.

As a musician/ Indie Record Label owner with worldwide digital distribution, writing a song seemed the natural course of action. I wrote The Film Director and in typical fashion for me didn't ask if she needed music for the film. I told her I was writing a song for the film. And I wrote a song titled "Be Here Now" based on the interview Mrs. Whitfield gave to a publication in Great Britain.

The plan was to record the song, knock Ms. Foster's socks off with it so that she used it over the closing credits of the film. I wanted the lyrics I will post below to be the last thing you heard as the credits rolled. My credentials are easily verifiable, all anyone need do is look on any device from a smart phone to a tablet or computer to an XBOx 360 or PS3 you can find my most popular novelty comedy act "Trailer Park Gangstas" and the song "Backwoods Love" that in 1995 started the whole trailer trash in music and television movement. I do apologize for that.LOL A better representation would be the ballad I wrote in the 90's "Everything I Love" by "Little Lost Souls". Also available anywhere you can find MP3s in the world. I know you're getting impatient to read the lyrics, they are coming soon I promise.

I told Ms. Foster I would have a finished song for her in September 2012. I had planned a trip to Tampa to Progressive Music where I have recorded since 1992 with Ken Veenstra. The song was going to be a kind of Damien Rice "Blower's Daughter" type acoustic ballad. Just 2 guitars, my voice and two back up singers. A male and a female. I planned to give the rights to the song to Mrs. Whitfield so 100% of the earnings would go to her family. I would simply have her copyright the song with the notation it was written "Work For Hire" by me. She would then be listed as the writer. I wanted every dime to go to the family.

But as you probably ascertained from the fact that I'm on a walker with oxygen it's unlikely that I will ever be able to record the song titled after the film it was intended to close; "Be Here Now". So I am passing along the lyrics to "Spartacus" fans, actors and Mrs. Whitfield. I hope the lyrics bring some modicum of comfort in what will always be an open wound for family and friends. I didn't know Andy Whitfield, but I do know cancer. And these lyrics were supposed to be for a song from a film with all profits to benefit his family. As my own health fails I can only offer you the lyrics. I hope you enjoy "the song that never was."

"BE Here Now"

This body doesn't work
And I have to leave
I'm like a butterfly
With broken wings

Still I will be close by
Watching over you
I will love you always
Now that's all I can do

I can slay the giant
I can bring the rain
And for those I love
I can fight the pain

I hope you live in the moment
I hope you learn how
You can't be here forever
You can only be here now

Everything can seem perfect
And in the blink of an eye
Your world can crumble around you
Without any answers why

You can be bitter
Filled with anger and rage
Let hatred consume you
But it won't change anything

I hope you live in the moment
I hope you learn how
You can't be here forever
You can only be here now

I slayed the giant
I brought the rain
And for those I love
I have fought the pain

I hope you live in the moment
Before you're forced to learn how
We can't be here forever
We can only be here now

Be Here Now

My fight is over
My spirit is free
When you see a butterfly
Always remember to think of me

See a butterfly watching over you
And you'll know in your heart it's me

Be here now
Be here now
Live in the moment
Be here now

Live in the moment
Be Here Now

Tips for men from a 10yr Survivor

Men statistically don't live as long as I have with cases of SLE as severe as mine. So I thought I would offer a few basic tips on how to get this far. 1. Hydrate! You must hydrate and hydrate well. You have to protect your kidneys. I began having chronic kidney stones a couple of years before I was diagnosed so I got a head start on hydrating. But this can't be overstated; YOU MUST HYDRATE! 2. Bad habits are unacceptable. SLE can attack any organ. No smoking, no drinking, no drugs. If these are a coping mechanism, find a new one. Try exercise while you are able. It will matter later. Get healthy early and stay healthy, as your flares worsen you will be less able to exercise and having that good health in the bank will help you in the long run. Why do you have to stop smoking to protect your kidneys? You don't. You do it to protect your lungs from Vasculitis. Respiratory Distress isn't pleasant, I went full code because of it. 3. Take your vitamins and eat your veggies. This isn't changing your habits, it's changing your lifestyle. If you can you might also guard against other auto-immune illnesses. I eat preventative diets for Gout and Diabetes. If you want a burger, just have Bison from Whole Foods as opposed to Wendy's. And you need to get all your nutrients, you'd be surprised at the strange issues that can arise from not taking a simple vitamin daily. 4. Avoid the urge to over-medicate. You are going to have to learn to live with pain. If you use heavy doses of strong pain medications early in your treatments you may render them ineffective by the time you really need them. And a day will come when you really need them. 5. Be as social as you can for as long as you can. When you find yourself sleeping in the living room because you can't climb the stairs with every medical gadget you would find in a hospital and you only feel up to getting out when you have to see your Doctors, you'll be grateful for every act of kindness and every friend who calls or visits. There you have my 5 easy steps to living long enough to die alone screaming in pain! Or maybe beat the odds? Some of have to right? Rob

The myth of dying with "dignity".

I often hear people talk about dying with dignity and I wonder what exactly that means? Is refusing to live off machines dying with dignity? Is refusing treatment that will only prolong your death dying with dignity? There is no such thing. You can live with dignity, but like everything else in life, you can't take dignity to your grave. I can draw a line at what treatments I will or won't take. But twice this weak I have nearly passed out in the bathroom. The task of wiping my own butt took more energy than I had. Where is the dignity in that? When I went in respiratory distress and flatlined, as with most people when they die, I shat myself. They didn't do much to clean me up because they didn't expect me to come off life support. I woke up in a gown on a sheet and under a blankets all with my own feces on it. Not very dignified. You can take medications for your pain and you can balm your soul with spiritual beliefs if you have them, but when you are gasping for breath, not much helps the fear at the moment. You can accept that you are going to die, you can even prepare to die, but in those final moments I think eve3ryone is scared of the dark. I was, I will be again. Be kind to other people. Show compassion because you can, not because you feel you have to. Be honest. These are a few of the ways you can live with dignity. When I finally lose this almost eleven year ongoing struggle with systemic lupus, unless I am sleeping I will probably be gasping for air, screaming in pain and begging for help. Just another dying man scared of the dark. If I am remembered at all I hope it's for the person I became after my other passed away. I have tried to be someone she would be proud of every day. I don't always succeed. But I try. I hope people remember me for that if anything. Remember how I lived, not how I died. Rob

Just A Little Pin Prick... In My Soul...

I started this blog later than I had planned. I talked about it on Twitter and Facebook. It was supposed to be a polished video blog. I thought I would have more time. We never have as much time as we think. I know I am dying. Not actively, but certainly. I know all death is certain, but I have reached a point in my treatment where I am no longer getting better. I am simply making trade offs with my health. Raising my O2 sats to levels that keep me from going into respiratory distress again forces me to raise my blood sugar, my blood pressure and heart rate to sometimes dangerous levels. I have been using the term "Profoundly Weak" I know it seems like poor grammar, but it's the best description I have for how weak I have been. I literally didn't know it was possible to feel so weak and still be alive. I am laying down typing this with my laptop on my chest and frequently have to pause and my breathing is labored. All this while I am in less pain than I have been in weeks. But less pain these days is still more pain than I can sometimes stand. Because I only leave the house now to see Doctors I'm pale. But that is more than a cosmetic problem, my Vitamin D is dangerously low. I didn't even know Vitamin D could be dangerously low. I have been getting muscle cramps that feel like tears and cause me to literally scream out and cry in pain. It's gotten better after a heavy supplement regimen. I think I have already mentioned this, which brings up another problem, my memory. I simply can't remember anything I don't write down. I'm not getting enough oxygen even with oxygen for my brain or body to function. 3 days this week my O2 sats have been below the level where I am in danger of respiratory distress. Once it's reached the level where Doctors worry about people falling into a coma. I don't know how long I have. The Vitamin D issue can be a sign of failing kidneys, which would be the end because I won't live off more machines. I could make it through the Winter and maybe feel better in Spring? I have no idea how long I have left. But when your treatments become trade-offs it's almost certainly the beginning of the end. An end which could be months away. I have a knack for cheating death. But in truth besides being so profoundly weak, I feel like someone poked a hole in my soul. I feel like I have a slow leak in my life force. I really can't explain it unless you have felt it. And I hope you never do.