Thursday, June 3, 2010

Maya


















Maya
New York City
Diagnosed with Undifferentiated Spondyloarthropathy at age 15

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How has your condition affected you?  It wasn't easy to live in pain through my childhood and my most formative years - it's not easy today and it wont be easy tomorrow. I've gone through my share of denial, grief, anger and fear and I'll go through it again. But the difference now is that I've learned to see my illness as just part of me - the person I'm proud to be. Being in chronic pain has made me search for the the small joys: the people, animals, places and things that I can still enjoy every day. It begs me to accept the ups and downs and to roll with the punches. It has also taught me to accept myself on a different level and, instead of dwelling on what I can't do now, take pride in the things I've overcome. I've called my disease a "built-in friend filter" because the ones who are left standing beside me are the ones who are meant to be there. I've also come to know myself and others in a much more intimate way.  Looking forward, Spondylitis has also helped me recognize my calling for social work and helping children, young adults, siblings, parents, and families as a whole cope with the challenges posed by chronic illness and disability. I don't know that I would have found this purpose without my disease.

What would you like for other people to know about your condition?  Living in pain every day is something that's hard to describe, but thank you for asking me to try. Sometimes I want to talk about it and sometimes I don't, but usually a simple and sincere, "How are you feeling today?" goes a long way. In fact, if you're wondering anything about my illness, it's okay to ask (it would show me you cared to know). It means so much when you come to understand the unpredictability of this disease, realizing that things can change from hour to hour and that I can't always keep plans. It means even more if you're content in skipping these plans and just being with me. It's hard to see you sad for me, so try not to feel that way. Instead, focus on the things I can still do. But really, it's the littlest things - the every day things - that can mean the most... carrying a heavy bag when you see pain in my face, walking slower than normal, or even opening that jar that I swear I loosened for you ;) 

What would you like to tell someone who was recently diagnosed with your condition?  Congratulations on having a name and reason for your pain and for taking a crucial step toward feeling better. Now make sure you have a doctor who will work aggressively to slow or stop the progression of the disease. After all, we're lucky to live in a time with medications that do just that. Don't just take his or her word for things. Actively search for alternative therapies, work with this doctor, but still be your strongest advocate. When the diagnosis settles in more, you have a choice to make: do you make this disease an enemy or just another part of your life? Try not to fear accepting  "letting the disease win" - you have enough to fight without fighting yourself. Allow yourself to feel proud of the simple fact that you're living in the face of pain. Really listen to yourself and it's likely you'll become self-aware in ways that others could only imagine. You'll also develop great empathy, recognizing pain in peoples' faces. This connects you to humanity and your fellow sufferers on a deeper level, so talk to them. You don't have to do this alone. Spondylitis will make you appreciate the "good days" that much more. It will force you to slow down and appreciate the people who will slow down with you. Most of all, try not to beat yourself up because ups and downs are the name of the game. Illness doesn't have to be the end of anything, so focus instead on all you can still do and get ready to surprise yourself with your own strength. 

  



















(We met a super cute puppy during our shoot.  Hi Randolph!)

Please take a moment and check out Maya's wonderful blog, Loving with Chronic Illness.
Thank you so much Maya!!

3 comments:

leedav said...

Her answers were so thoughtful. Thanks again for sharing these stories.

throwingwaffles.com said...

She's so pretty! And so hopeful and inspiring. It's gotta be so damn hard living with a disease like this. Even more, I think it's really cool that she's made it her life's work to help other people going through difficult situations.

--elizabeth

Anonymous said...

Wow... I can't imagine what it would be like to live with that kind of disease. Maya's answers are quite amazing too. Sounds like someone with an amazing heart with TONS of strength.

Standing applause for Maya along with a GREAT BIG hug that is still gentle. :)

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