A.S. Face 0042 : Deverell Dotos
Dear Ankylosing Spondylitis,
When we first met, you introduced yourself as Once in a Blue Moon. In puberty you were the Holiday Holy Man and at age 18 debuted as the Invincible Independent.
Prior to 22 AS had only pilfered from me. From ages 22 – 25, unabashed, it pick-pocketed my identity, confidence, finances, and foundation. This heist was only possible because An-kill-lo-sing Spond-il-itis is an invisible disability, cloaked so well that it hid from at least 12 privileged prescription-writers.
The 3.5 – 4 year diagnostic episode is similar to the story of Icarus but with a different ending. Our motivation, initial trajectory, and retracement are the same.
During those years,
The Top 11 on my Itunes resembled:
Smokie Norful – I need you now (prayerful, helpless, scared)
Yolanda Adams – Be Blessed (reassured, resilient, ++)
Lauryn Hill – The Conquering Lion (meditative, humble, triumphant, )
Bob Marley – Natural Mystic (ode to Mother Earth)
Lil Wayne – Let the Beat Build (facing fears, conquering, fighting)
John Lennon – Imagine (accepting)
Air – Space Maker (breather, frustration, anger)
Lil Wayne & Eminem – Drop the World (clenched fists, able, release)
Tracy Chapman – All That You Have Is your Soul (zen, cathartic, protective, thankful)
Music and THE deep feeling it liberated, just like the symptoms of AS, crept up and then consumed me. It gave me lifelines and pep talks and kept me company during agoraphobic bouts. Before AS I thought I knew me. I had long stretch stress days and bought into all the ideas of what was supposed to make me proud and happy. I expected that meeting ‘impossible’ deadlines, a good salary , a Title, a home, pets, and learning to cope with stress rather than stopping it {EGO} would make me happy. I wasn’t aware of the choices and tradeoffs.
In the beginning…when biological symptoms became present, I prepped for various outcomes. I’d been sickly in my youth with Raynauds, Cholesteatoma, general malaise, and migraines. Those experiences along with others were my frame of reference, and just as in those many many instances, I expected to go to an MD and either discuss/debunk, discuss/diagnose/treat, or discuss/diagnose/macabre pose. I hadn’t prepared to discuss/convince/advocate/breakdown/investigate/make peace.
AS, I finally say thank you. You are humbling me by highlighting the tradeoffs, constantly asking me to interrogate my thoughts and actions, and making me more mindful of my effort and intention. Before you, I wanted to be successful <insert social definition>. During the unveiling of you, I wanted to be “back to normal”. Now that I know your name and we are well acquainted, what I want is more congruous with what I need: Happiness and Health. I appreciate the clarity. Thank you for picking up the excess baggage, and thank you for making me happier, humbler and holistically healthier than before. Thank you for introducing me to Yoga, meditation, better foods, supportive people and a more stress free authentic
Deverell Dotos.
San Diego California United States of America
Deverell, I truly enjoyed reading your story. I like your writing style and appreciate the power of words. I’ve has AS a long time; my story will appear here one day soon. I just wanted you to know that I not only like your writing style, I like your position of thankfulness despite, or perhaps because of, having AS. Tyler
Dear Deverell,
Thank you so much for sharing your story with us. This is simply amazing, so creative and inspiring. I can’t say enough about it. I love it. I love the picture, the music and the imagination and talent shown. Amazing. Plus you included my most favorite song. All That You Have Is Your Soul. I love Tracy Chapman. Thank you for honoring us with your story.
Sincerely Cookie
Deverell – A most creative and on-target description of what AS does to our bodies and souls. Stay strong – LB
L.B. Herbert said this on October 23, 2011 at 9:53 pm
Music helped and healed me along the way.
Music is powerful.
Thanks for sharing.
Jake Chegahno said this on October 23, 2011 at 10:06 pm
I am so proud of you for sharing your encouraging story. You have truly shown your growth and strength.
L.J.B. said this on October 23, 2011 at 10:13 pm
Dear Deverel,
I so love your writings – very well said. May your peace continue to grow as your battle with the beast moves forward. May your soul shine on and share it’s strength and light to those in need.
Highest regards,
Jim
Jim Weatherhead said this on October 24, 2011 at 1:28 am
Thank you all for reading and supporting.
Deverell said this on October 27, 2011 at 6:21 pm
You never seize to amaze D. Love your poetic rhythm #EnufSaid
Buntubakhe Mark Sotyantya said this on November 22, 2011 at 11:54 pm
wow amazing xx and tru xx
all i have to say is WOW. you put beauty in A.S. somehow. you have helped me become more at peace with my old friend A.S and obce again just knowing were not alone in this fight.
soft hugs and many thanks,
steffie jo
Thank you for sharing your story. On my good days I aspire for your clarity. Namah shvaya gurave, Rich
Don’t know what to say. Your thoughts are those that my wife has her me express over and over, alternating between peotic and “choice” language. AS has become a part of me. I do have moments of frustration, but I try to feel blessed, being humbled in a way that causes me to be able to empathize with and love others in a way I probably would never have learned. I love your pictures; taking AS to the hole! Haha