So I have debated this writing for a very long time...normally never deterred by the many that wonder why I am so obsessed with my book marketing and avocation....First let me explain this...Its not obsessive...well maybe...but I like to call it passionate. But my hesitancy in fully disclosing what happens medically to me behind the scenes is because they can be daunting with 1/10 of an immune system. People don't need pain, misery and stories of suffering....they need hope and "I AM FULL OF IT"...hahahaha...But honestly, I don't want pity, or sadness. I want engagement by and through a collective of loving people united as one. I don't need suggestions or offers of healing....I certainly do not need to hear what I am doing wrong. In fact you don't have to say a thing. I just want and in fact need your presence to heal. TO MAKE A DIFFERENCE. Pure and simple. I build a collective everyday. Bigger and bigger. It does take a village. Not to just sell a damn book. But the message in the book. It is an instrument, a voice screaming into the night. Yelling....get together...make a difference. Even if it is $1 or $3.99 for the kindle. We still donate the dollar to make sure it is about the cause not the money.
Second...in case you missed it let me make sure you understand...this isn't about getting rich...we donate almost all of it to charity.....FYI
Third-its not about being famous...let me explain why...
A few months ago in my LAST visit with the Mayo clinic. I was told that I "might" have lymphoma. Cat scans showed an increase in the swollen lymph nodes in and around my spleen and liver. To properly diagnose...or should I say to properly "believe" the diagnosis. It requires a surgical biopsy of the lymph nodes. But like all things that curse us, a "proper" diagnosis being one of them, I chose not to go through with the biopsy. God knows its not the biopsy that worries me...I have had 22 biopsies in the past 5 years. Imagine that...22 Try waiting for one and you understand the anxiety it causes while you await the pathology report. It wasn't this that concerned me as much as the recommended medical treatment if they confirmed the biopsy. Chemotherapy. I make no judgement for those who believe in this treatment. If you think it will work, then it very well probably will. The placebo tells us this. But I feel it isn't a path I want or need with 1/10 of an immune system. I am just not really a candidate for it quite frankly. So why go through another biopsy to confirm something that I wont go through medical treatment for. I don't need the curse. When I made this decision, I have to tell you it wasn't received by my Doctors very well. In fact there was some frustration about it. In lieu of this they recommended Hospice as the pain has gotten a bit out of control. I have dealt with pain everyday since my diagnosis of End Stage Aids. My bones ache. But I find ways of dealing with it that do not include narcotics. Instead of accepting the referral once again to Hospice I suggested they read my book and call me in the morning. I'm pretty sure that's what pissed them off. LOL But it was here I decided my path with the Mayo was no longer viable for me. Time for another opinion.
There were other medical concerns...Several months ago I told you about a Pineal Gland cyst discovered after complaints of cognitive symptoms in a cat scan and then MRI. It was 6 mm and caused by a leaking blood vessel that had somehow sealed itself off. Miraculous once again to me. 5% of the population is reported as having Pineal gland cysts. Most don't have symptoms. I had a boat load. Including severe headaches, balance and coordination issues, forgetfulness and significant personality issues that made us cautious of HIV Dementia. I became volatile and quick to react. Never in any way accept defending my boundaries which kind of makes me giggle in the sense that I think its important to defend our boundaries. I have often times eaten it and moved on causing a build up of emotions that inevitably- blow up. Clearing these issues at the time are important if done in a respectful manner. But many will never see the defense of your boundaries as "respectful". Ironical if you ask me. But if I can urge you one thing...speak your mind...let that shit go...it is a natural way of processing the energy. Without it becomes difficult to actually let it go. There's no shame in telling others when they cross the line. All be it painful for them sometimes.
The pineal gland area intrigued me as it might you in regards to what we understand about the pineal and it being the seat of spirituality. It made me giggle actually. We decided to listen to the doctors here and they ordered a cat scan every few months to watch its progression if there would be any.
Regardless of these two significant medical issues and our lack of willingness to chase the biopsy bullet we did agree to allow cat scans and two weeks ago we had another. The results showed the lymph nodes(prior the size of large marbles) were now nearly 3 inches in diameter. Confirming the increase in pain I had been experiencing lately. The head scan also showed a disturbing result if you let it. But I try not to. The pineal gland cyst went from 6mm to 11 mm and was now actively leaking into the brain. Disconcerting. Doctors tell me it will eventually effect more and more and more of my abilities until one day it will effect the natural order of my brain including breathing. It was said it was inevitable if a sudden stroke didn't get me first. Geez, thanks for the positives Doc...lol
You see I have been given opportunity after opportunity to not only show myself but the world the bodies ability to heal itself. I just assumed since people weren't getting it. By getting it I mean it is not me. It is and always has been you..The caregiver and nurturers who support me and lift me up daily for one more day of trying to make an impact on a disease out of control. Thank you for that. All of you. There's not a lot of work for you...sharing a post, leaving a review, reading the book, telling a friend or inviting friends to follow our journey. All small easy, if not twenty-second moments of outreach and connectivity but oh so powerful.
I would have another couple of opportunities with these two medical things to once again prove to myself the healing power of love and positive belief. Yes, I realize that eventually we all must die and I do listen. Not necessarily to the Doctors, but that little voice inside me that has never led me astray. Unless I ignored it. I have spent the better part of my life prior to my experience ignoring my instincts and over and over the lessons were well learned.
I will find a way to beat these two issues. Let there be no doubt about it. But that pain is distracting. It has forced me into seeking out new ways of dealing with the distraction of pain and it has helped significantly. Acupuncture being one. But by no uncertain terms the most effective way I have found to not only ignore the pain but heal. Is to stay busy and try to help others as much as I can. The healing ability of love and being loved cannot be denied in my tale. It inspires me daily to share
So when people wonder why I am so "passionate" about advertising my story. Perhaps this will clear it up for them. A wise man once said " the problem is, we all thing we have time." Maybe I don't. But what I do have is a resounding understanding of gratitude. When I am thankful everyday for one more day. I really actually mean it. When I speak to others about my experience. I quite honestly don't know if it will be my last time. That is called "awareness of life". And I am rich with it. But the truth is we all should be. The amazing delicate balance of the human body is clear. One milligram either way and we stop existing. One foreign signal in the energy of our hearts and we die. Everyday you awake is a dance on the edge. If we slow down enough we might actually realize what a true miracle it is to be here.
You see I don't worry about death or being ill. Worrying is manifesting and our thoughts are indeed energy. We all must use caution and responsibility of what we focus on. That much is clear. I try not to worry about anything honestly. But I do spend time trying to build my business. You see my business is a charity. And I will never apologize for the passion I have to share my story with the world. Never.
People tell me to slow down. Spoken like the true people who have no idea what its like to be this close to the edge. I like the edge. Hell, I always have. Its kept me on my toes. It reminds me of the fragile state of life and the blink of an eye it takes to change everything. I live here everyday. Why am I so grateful for life considering all I have been through? THAT'S WHY.
Many still argue about the glass being half full or half empty...fuck that...while your debating it. I drank that son of a bitch. While many research and plan....I just do it and I am better for it. Planning sometimes is not manifesting. It depends on the attitude while you wait I suppose. But the truest form of disappointment is expectation. Like all things it takes a responsibility. But let me clear about one major aspect of my survival that saved me. Finding the love for myself. You just can't give it if you don't have it. I love my messy side...my flaws and everything that comes with it. Our "mistakes" are not something to dwell on with pity. They should be rejoiced for what they are. The most impact-full teaching moments of our lives. Look, we have been taught what others feel is right and wrong since childhood. Stuffed into the box of others so forcefully we have forgotten the one truth. Finding our magnificence takes one single common denominator. NOT FITTING IN. Its ironic if you ask me that nearly everyone who gets it is OK with one aspect...Being different. There is no lite in that box. Its lonely and dark there.
May you rise out of those boxes and embrace your remarkable self. The messy side, the flaws, the beauty and the grace. It is all ours when we stop following the Masses. Keep in mind sometimes the "M" is silent in those Masses.
I hope this helps you understand my situation and clarifies my "passion". Until my last breath I will do what I can for this world. Unconditionally. But I wont do it silently and for that I wont ask for forgiveness. Remember, advertising is effective but one thing remains important to remember. 85% of all advertising is forgotten in 24 hours. So with that I say to you this....
SEE YOU TOMORROW