My favorite Christmas show is Rudolf the Red Nosed Raindeer – and it’s because of the land of misfit toys and Charlie-in-the-Box was the misfit in chief.
Growing up I always felt like I didn’t fit in. I was too tall, too skinny (then not now – lol), the new girl (constantly the new girl), sports were riddled with injuries, and the list to me went on and on. And then in my mid-twenties I met a great group of friends and we were inseparable until we all started getting married and I became sick. After living in California for a couple years we moved back to Colorado – I was not the same life of the party person they expected – again the misfit. This was right before I was diagnosed and I was distraught about what was happening. I thought I was going crazy – what was happening to me? Those friends didn’t stand by me so I haven’t spoken with any of them for over 6 years because it was earth shattering at the time to have them doubt me right when I needed their support the most. There wasn’t as much information available then so I didn’t have a Facebook page or blog to point them to and say “SEE!”
For anyone in their 20’s (this is making me tear up) just starting to deal with a diagnosis of AS – here is what I need you to know: You are not alone, you are not crazy – the pain is real and there is a reason for it that is not your fault. There are people in many places out here who will stand by you and help you get to a better place with the disease. It will get better – maybe not because of a remission or a cure – but it will get better because you will find ways to incrementally deal with it and accept it. It will get better and believe it or not, you will become a stronger, more empathetic, and loving person. And…. AS teaches you to fight and persevere. Without the experience of dealing with this disease I would never have had the courage to attempt my journey to create 365 daily art apples. For that I am truly grateful – and feeling a little bit less like Charlie-in-the-Box.
Day Seventy eight was created with pen, ink, watercolor and a touch of acrylic ink.
I have to admit that I wouldn’t have made it this far without the encouragement and support of so many people. As time goes on, I will be talking about how my support team and some new friends have kept me going. I will fulfill my pledge and create my 365 days of apples and we will have all done it together. Since I live with AS, there have been some difficult times but I refuse to give up or give in and AS has taught me that this is the only way to live our lives no matter what challenges we face.
I’d like to thank the Spondylitis Association of America who helped me a few years back when I really needed a connection and a community and then again this year with their support of Art Apple A Day. Their dedication to fighting AS and related diseases and those of us living with AS is truly amazing – I feel hopeful and confident with them at the helm.
For any new visitors who found your way here from the SAA Holiday Card – I’d like to thank you as well. Your support of the SAA means more research for a cure as well as continued programs, seminars, and outreach. Please follow my progress as I work to raise awareness of Ankylosing Spondylitis with my Art Apple A Day. You can sign up to get the daily Apple emailed to you each morning – there is a sign up box in the upper right hand corner of my blog page. Also – apple ideas are welcome and truly appreciated! I’d love to hear from you – your comments and feedback keep me on my path 🙂
A dash of this and a hint of that – and mix it all up. Mixed media or collage are such a boring names for throwing it all together. Maybe I’ll start calling mixed media pieces “everything but the kitchen sink” or “visual carnival” or perhaps more appropriately, “disparate madness” – ooh I like it! If I use any of those maybe I’ll loosen up a bit with them. How can you take something too seriously if you call it a visual carnival. Here’s a great quote I just recently came across – “Not a shred of evidence exists in favor of the idea that life is serious.” –Brendan Gill
I think he’s right.
Day 58 was created with everything but the kitchen sink.
I have Ankylosing Spondylitis. That is extremely difficult to say and proclaim to the world. I have spent the better part of the last ten years hiding this part of who I am. I don’t think I’m alone or unlike so many people dealing with any of these similar inflammatory autoimmune diseases (Rheumatoid Arthritis, Psoriatic Arthritis, Juvenile RA, and AS to name a few.) Before my diagnosis especially, all of my energy went into either finding an answer for the pain or doing what I could to get by.
My life became fight or flight and I didn’t have the energy or ability to do either! So, I survived by wearing a suit of camouflage and took on the stance of hunker down and hope no one noticed that I had stopped going to parties or hiking or skiing. Shoot, I cringed at the idea of becoming vertical let alone going to sit on rock hard bleachers for a game or figure out how to stand at a cocktail party (heels – hah!) The idea of making small talk when the pain medication I needed to be there made me either fuzzy or overly bubbly. I thought I had found a somewhat plausible story to tell people as to why I stopped working and the fun, crazy Jenna was just someone I outgrew. Sounds legit – get married and become boring… I became sooooo boring.
I think that the stigma is a big part of why others may hide also. Chronic pain is viewed like a modern day leprosy (my sincere apologies to anyone suffering with leprosy or Hansen’s disease – talk about a misunderstood illness and social stigma!) And that’s just it – there is a social stigma that will only diminish as more people discuss and share their lives and experiences. People who have a spotlight to actually speak firsthand about these illnesses have built their whole lives around a Hollywood façade – who’d want to hire them to be glamorous and adventurous in the movies if they actually told the story of their daily lives? I’m taking off the Camo and maybe little by little in conjunction with all the bloggers out there, like Kelly at RA Warrior who asked people to blog today about this topic, we can slowly one step at a time make a difference.
Day 54 was created with pen & ink with watercolor.
I am so lucky that she is my best friend, my biggest champion for following my dreams and talent, and the person I wanted to speak with when I was so sick that I was crying out in pain. She was there at my side back in 2000 when I went to a doctor at a Stanford (yes, the Stanford) practice before I was diagnosed who asked me – “How is your marriage?” Yeah, that was the cause of my pain – hah – going on 13 years… I could see steam coming out of her ears. When my Remicade treatment was delayed this month, she bless her dear heart, said “You are NOT going back there – go get that infusion!”
My mom, Susan, is amazingly smart (the go to in the family for all things concerning the English language – Bates College English major and first to correct our use of me vs. I and bring & take.) She is clever and quick and has a subtle, charming sense of humor and an amazing eye for design (although she will disagree.) She is a wonderful grandmother to my brother’s kids and just retired from many years as the heart of my parents’ business and then a wonderful career at Bowdoin College.
I’m just so lucky she’s my Mom and I adore her. So, Happy Birthday Mom – this apple celebration is for you!
Day 50 was created with extra love and care….. and watercolor. These apples are my first Golden Delicious – usually I go for the reds and greens but cake seemed like it would be better this way!
It is so vast out there! The internet that is supposed to make our world smaller by instantly connecting over 6 billion of us can often make me feel very, very tiny. Not small but tiny. Tiny in comparison to the total number of pageviews, twitter followers, likes and hits that this so called connectedness causes us, well me anyway, to be conscience of. I may need to rethink my purpose here. I’m spending too much time worrying about the insignificant things and not the art and whether or not it can help. Is it making any difference? Can it ever? I am committed to my 365 days of Apples and I believe that people will and do like what I’m doing here but…. people will either “like” it or not. And if you do – please pass this site on to someone else who might like it also. I am going to go paint 🙂
Inspiration and creativity can come from the least expected places.
This adventure that I’m on – thirty four days today – is taking me into the world of blogging, twitter, and facebook and the learning curve is steep! I have no idea how to tweet! I’m not supposed to admit that since I now have twitter followers but the blog automatically tweets my new post so – please forgive me if I have a mis-chirp and use the @ incorrectly or don’t understand the etiquette of hash tags. Oh my!
But back to inspiration… I’m finding it in so many places. Thank you social media world!