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

I have an autoimmune disease and its hallmark symptom is pain. I’ve been enduring it since my early twenties. In that time I’ve handled it in the expected way. I went to doctors, got medication and then different medication and then newer medication until I had no options. Side effects out the wazooo; vomiting, heaving, tremors, rashes, dehydration –  womp, womp, womp… depression.

My body was sensitive or allergic to everything: medication, food and cold weather. Aargh! All at once the young fit morphed into the young fit me trapped in a painful, decaying body. Decaying, not like a leper but like how a tree goes from summer to fall, slowly and drastically, distinctly and unevenly. Little by little I learned what it means to have a “progressive degenerative condition”.  Doctors said, “I don’t know how to help you” so I tuned in to late-night infomercials, gave my credit card number and bought all the gimmick cures. Those failed and I thought I would fail too, not at life but at having quality of life.

Remember when you were 21, healthy and eager, planning for the future. Now imagine at 23 struggling to walk and becoming the kid with a mystery illness. By 26, nearly five years after my daily symptoms began, less than one year after diagnoses and a gaggle of doctors, I had a dialogue with myself and the space around me. It went something like this…

I can’t do this anymore. I don’t know how to live without hope, how to cope with chronic discomfort and ceaseless physical attack. The rest of my life will have this never-ending suffering. Am I supposed to get used to this? Is this what it means to man up, grin and bear it? I feel like I’m tightrope walking on fishing line, preparing to fall eight miles. I don’t know what to do.

G.I. issues, muscle spasms, herniated discs, swollen joints. PAUSE! Please just for a little bit let it stop. Unfortunately, we all know ‘Life’ does not work like that. So I did the only thing I could – I ran, in search of something, though I didn’t know what. I got on a plane, traveled 8,000 miles, then a few hundred miles, then 7000 miles, from time zone to time zone. I whined the whole first half of the journey. I had visible physical limitations, invisible fears and my bank account became an anus only functioning to dispense, not receive cash. And then a year ago things started to click. I developed a regular yoga practice, conscious eating habits, relocated to a place with year round summer weather and learned to mitigate the functional challenges of my condition. I still couldn’t run five miles or weightlift like I used to, but I could walk and climb stairs unaided, ride a bike and carry groceries home without my muscles cramping. What seemed impossible was slowly happening. What started as a landslide and what doctors expected to be downhill was reversing. NO – I wasn’t cured, in remission or the recipient of next-level intervention, but I was eating wisely, exercising regularly, living in a warm climate and smoking pot (herb, ganja, marijuana, Mary Jane, 420, cannabis, etc…).

So why am I sharing this?

a) I’m allergic to pharmaceutical treatment options

b) I’m in pain

c) I live in a state that has not decriminalized medical marijuana

d) Cant shake the feeling that I am entitled to quality of life

e) Tested negative for cocaine, amphetamines, opiates, phencyclidine and positive for marijuana on a pre-employment drug test

f) All of the above

You guessed it  – F.

I have no criminal record, am not a recipient of any social services, don’t drink alcohol, have Ankylosing Spondylitis [now you know] and just like the police, firemen, congressmen, mommies, daddies, sisters, brothers, aunties and uncles of the world I want to live within the law and without needlessly enduring pain. Should I just get used to the way things are, or  am I entitled to help myself?

What would you do?

14 Responses to “A.S. Face 0042 : Deverell Dotos”

  1. 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

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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 Weatherhead said this on October 24, 2011 at 1:28 am

  7. Thank you all for reading and supporting.

    Deverell said this on October 27, 2011 at 6:21 pm

  8. You never seize to amaze D. Love your poetic rhythm #EnufSaid

    Buntubakhe Mark Sotyantya said this on November 22, 2011 at 11:54 pm

  9. wow amazing xx and tru xx

  10. 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

  11. Thank you for sharing your story. On my good days I aspire for your clarity. Namah shvaya gurave, Rich

  12. 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 🙂

  13. Loved the originality …
    You are entitled to live your life and do what helps. If medicinal cannibus helps – then I agree. (… And it’s in a legal state)
    Like the similar attempts to dig out of the pits of hell and come back with The other additional changes- diet, exercise, yoga ( biggy for me)
    Best of all you have quality of life back…and a balance…
    Live it…

  14. this was very uplifting. At first I thought all of my pain was becuz I thought I was out of shape. I had no idea that it was the beginnings of A.S. Now since I have A.S. I really do want to work out. You have a great body man. I always wondered if there was people with A.S. who are cut with muscles and how they deal with it. Truelly inspiring.

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