HELLO Family!!!! Ive been ask the simple and complicated question of…
What is to live with HIV?
If anything, I had learn from the beginning of my journey with HIV, that by now is 30 years with it , that:
. HIV is a very personal journey. What has worked for me, might not work for others
. Always, listen to your body. Even if it’s a crazy thing, check out with your doctor, follow your instincts with a well inform mind.
. My favorite word is BALANCE, not in the sense of 50/50, but as I read somewhere is about knowing where to lean to when necessary.
. Cherish your friends and family like a wonderful treasure. I always make it a point to thank my friends as often as I can. And my EVERY DAY MANTRA is ” Thank you GOD for everything you’re giving to me, every day and every night, every moment of my life. I’m not religious, but a very spiritual person, so, if you like this mantra, use it as it feels comfortable for you.
Through my journey with HIV I passed like many of us, by different stages, including denial, but curiously, anger never set up with me. Some people, even know, they said we have to get angry again to change things, to make things better for us, and I prefer the loving way. It’s not that I don’t get upset, or that I don’t speak my mind in meetings- specially with politicians, or policy makers-, and I have had my yelling moments, but I smile a lot, and I’m very thankful for my optimistic point of view.
How do HIV has impacted my life? wow, I guess, these statements above, refer a lot to how I deal with many things, but my life is not easy in so many ways.
I had been close to dying a few times, I’m an 8th year cancer survivor, chemo saved my life, but made my neuropathy go to VERY high levels of pain. So, now I live with chronic pain, and I’ll say, I maybe once a week, when even with pain killers, my pain doesn’t stop, and I feel like scratching the table in front of me. Yes, pain is my main issue.
MY practical life is made of good days and bad days as it is for everyone, but when I say bad days, I mean, literally not able to get out of bed. I don’t think I have depression, but maybe I’m in denial about this matter, maybe I don’t want to have it. Who knows. I do know I have anxiety, and my sleep is very bad, my dreams get affected by pain – you can see visually how it goes in the film LAST MEN STANDING, where they chose me to be “literally” the poster boy. I believe they did an amazing work.
It does get worst when other health matter accumulate, and there have been times that I do ask GOD, why, if I think I’m a good boy,why do I have to suffer to much? did I did something terrible in another life?
A big part of my life now is made of helping, or trying to help other HIV LONG TERM SURVIVORS, you can find our wonderful group page in Facebook. We’re in only 7 months more than 2000 member, it has become an amazing group for support, information, love and simply expression of our voices that need to be heard.
HIV, is not me, I’m so much than HIV, but I can’t stop thinking about it, or leave HIV as a job from 9 to 5, my pain reminds me, my dreams remind me.
Creativity it has been a very important part of my life, and photography, music and song writing are wonderful outlets in my life. So, because of that, I want to end this rambling with the song I composed SURVIVING STILL. Here it is the lyrics and a link to my song.
No excuses, nobody’s fault,
but it felt like the end of the world,
it was a moment that changed my life,
soft as a rose, sharp as a knife;
and time flew by,
and time flew by.
“YOU’RE GOING TO DIE”
I was told,
but the light of the sun
comes and goes,
so many times,
day after day,
month after month,
year after year,
spring, summer, autumn, winter again.
And here I am,
it seems like rowing against the wind,
somehow I keep thriving,
when I feel a gentle breeze,
but in moments I feel like an island,
lost in the gigantic sea.
I feel I’ve been in a boat,
under the burning sun,
storm, after storm,
storm, after storm,
not a survivor,
oh, oh, surviving still,
oh, oh, surviving still.
AND HERE I AM SURVIVING
THROUGH MY PAIN, SMILING,
AND I FEEL LIKE FLYING,
OH YES, I WANT TO LIVE,
BUT NOT JUST TO LIVE,
I WANT TO ENJOY MY LIFE,
TO NOURISH MY SOUL,
TO WALK UP AND DOWN THE STREET,
BUYING MY BREAD AND MY MILK,
THE EVERY DAY SIMPLE THINGS,
WALKING MY DOG,
SINGING A SONG,
SINGING A SONG.
That was then and this is now,
once upon a time,
a new story began,
when something entered my body
under some strange plan;
but today I want to have
many “ONCE UPON A TIMES”
and here I AM,
not a survivor, SURVIVING STILL. Jesus Guillen- 2015