Today is Day One of the Art Apple A Day Retrospective – for information on the project click here.
Day One – October 1, 2010
I had just been reading one of Seth Godin‘s books (who at one point I emailed and actually received an email response – gosh I wish I still had that email)
And that’s when I got a wild hair.
Truly, that was what it was because seriously… what was I possibly thinking? A piece of art every day paired with a blog post? I had no idea what I had just set myself up for.
Anyway… I had been reading his book, The Bootstrapper’s Bible, because I was at a point after years of struggling with my health that I was finally seeing that life might be able to go on. I had to figure out what the heck I was going to do with myself. I had managed first a part time job, then a full time one that required two hours of commuting a day and occasional travel and getting those jobs required some major finagling having been out of the workforce for so long. The pace I was managing is extremely difficult for anyone I told myself but I desperately did not – could not – go back to where I was before the therapy and medications started working. I realized I had to design my future in a way that could accommodate my limitations. I quit the full time job with no clear path forward.
(There is actually more to this point in the story and I’ll share it at some appropriate time during the next 364 days – it’s a doozie!)
During this crossroad, reading Mr. Godin’s book and manifesto to hopefully figure something out, the first two sentences caught me and sparked the idea:
“I am a bootstrapper. I have initiative and insight and guts, but not much money.”
~ Seth Godin
The job realization beat down what little self confidence I had built back up and I now know that being a Bootstrapper with a chronic degenerative disease was a book in and of itself and the one that might have been more appropriate but I’m the ‘leap and the net will appear’ kind of person.
Here I was, I had no money and no job. Thankfully my husband cared for me all those years I wasn’t working but we didn’t have the resources for me to launch any kind of endeavor and the what ifs were piled so high I couldn’t see past them. However, the me from “Before AS” was a bootstrapper at heart and I’ve always been called to create. Reading the manifesto I realized that if I shared my story in a small and joyful way it could be an entré to building confidence and finding my way back to myself which would lead me to design that life I was looking for.
And, so, I quickly created this extremely simple digital apple on my phone (you can see how low the quality is – this was a phone app from 10 years ago!) and posted it immediately so I wouldn’t lose my nerve! I was afraid if I waited to the following day to create in the traditional way I was proposing, that I would talk myself out of, “Art Apple A Day” and I can’t even imagine my life now, without this being a part of me and the AS community.
To see my first post from 10 years agoclick here or on the image above.
On October 1st it will be 10 years since I took a giant leap into a year long project to raise awareness of a disease I have called Ankylosing Spondylitis or Axial/Undifferentiated Spondyloarthritis ~ A.S. for short because those full names are ridiculous!
My story is like so many who have A.S. It’s about the challenges we face when our health becomes compromised and severe pain & fatigue invades our bodies. I’m not over stating this – it is extremely scary to see your young body shut down. A. S. strikes people in the prime of their lives so a huge part of the issue is we are not believed. In fact, we’re told many demoralizing things like,
“Yeah, my back hurts too.” or “Try Turmeric, it will stop your joint pain!”
I even had a Doctor from Stanford ask me how my marriage was. Seriously.
Many of the suggestions for overall immune and joint health are well meaning and valid – I now incorporate many into my health regiment.
BUT… during what I call the crisis years… when your body is in such revolt and you have no answers – these suggestions are actually very hurtful. What we need is educated doctors and empathetic family and friends. We need to be heard so that we can get back to our lives.
For many with AS it takes almost 10 years to receive a diagnosis. Our search for answers is exhausting, frustrating, and long but I was finally referred to a Rheumatologist who kept working on sorting out the symptoms and believed me and didn’t give up. After finally receiving a diagnosis the long road to being “better” ~ but unfortunately not cured ~ can finally begin.
With a treatment plan I started to feel improvement ~ the worst of the crisis was past ~ I could move again and think again.
But I was angry!
I wanted to scream at the unfairness that most of my 30’s were basically a bust. At this point I was trying to figure out how to move past the hurt and do something constructive with the new understanding of what I had just endured.
I wondered how I could share my story to help others. Ten years is too long to be in such pain and basically disabled – I was almost bed ridden for the couple of years before finding help. (Those who knew me before AS and those who know me now find this very difficult to imagine and it is a difficult truth to share). If you are struggling with any health crisis I hope my story gives you strength and hope. A.S. treatments aren’t magic, the disease is difficult; it fluctuates from day to day and year to year and for many the treatments aren’t effective or accessible but there is hope to find your way to a better place.
I wanted to share hope most of all so I came up with the idea to use art as a way to focus myself and gain interest in learning about A.S.
“Art Apple A Day” was created! I chose apples because they are a symbol of health.
Each day for a full year, via my blog and social media, I shared a piece of apple art along with stories of challenges, thoughts, and successes and sometimes all I could manage was creating the artwork. My apples became a vehicle to discuss difficult topics in a mostly positive manner and to my surprise I also found friendships online with so many amazing people who understood what I had gone through because they too had A.S. Over the course of the year and since that first apple, the community of strong, courageous, and loving people have become like family.
{{{ I LOVE you guys!!! }}}
The year was a huge challenge in so many ways but I wouldn’t change it for anything and I am stronger for it! Now after all this time, I will share the journey once again, along with new insights, stories about what happened in the background, and 12 new apples – one for each month this time! I hope you’ll say hello and join me once again or for the first time because An Art Apple A Day might not keep the doctor away but I promise you it will be something interesting and positive in your timeline!
You can find me here as I take a retrospective look back each day or on Facebook and Instagram. Please don’t be a stranger – stop by and say hello!
I can’t believe it. Only one apple left after tonight. It’s been a crazy few days and to be honest – I’m feeling exhausted. Between the event preparations of this last month, the travel and jet lag, and the early morning today to get ready for being at KPIX at 7:00 am has been a bit much. When you have AS, you prepare and plan. How long can I do something, how long can I stand, sit, or walk. We think of contingencies and then prepare for the worst and hope for the best. But what happens is that sometimes we go to New York city and spend the day in the hotel room.
I expected this would be the schedule but I hoped for boundless and endless energy! Oh well – I know I’ll make it through the Apple-A-Thon. Resting today was just a little bit of added insurance. My family and friends will be with me – holding me up and cheering me on. I love you all so much for doing this with me, for taking your time and your energies and sharing them with me, for my dreams. I love you all so very much.
Until tomorrow.
Jenna
Day 364 was created in acrylics and graphite.
***For any of you who haven’t seen the interview yet – here’s the link! Make sure to take a look at the great article the station did for us below the video!
***When we got to the station – two things happened that I thought I’d share. First, the producer said “wow, we wish you could paint an apple while you talk” – can you imagine! I’d love to paint an apple on t.v. but no one would have heard a word I said about AS. Maybe if I’ve got 10 minutes on a show and not 2! How bout next time??? Second thing was that they said all of my apples were too small (I thought we’d gone over that!) and did I have something bigger? Quick call to my Dad back at the hotel and he jumped in a cab and brought over the Apple-A-Thon Poster which ended up being perfect – and Dad got to see the inner workings of the t.v. station too! All in all, it all worked out and it was a great experience. Hopefully a little bit of knowledge and awareness about AS was spread today!
***Here’s a photo of me resting with my niece Parker and nephew Beckett. Parker picked out this beautiful magnet for me today – it’s an apple and I adore it!
***My thoughts today with my friend Amanda and her daughter Alexandra.
A New York Yankees apple was in order – a big thank you to all New Yorkers for embracing the Apple-A-Thon.
Since I was born in Princeton, NJ and my Dad grew up in Upper Montclair, NJ – listening to the Yanks with my grandfather, Willard who was a huge fan – I will root for the Yankees happily this year. My brothers, Red Sox fans and my husband a Colorado Rockies fan will have to – have to – approve this year.
I for one will celebrating and thinking about the glorious apple.
They have come to mean so much to me and hopefully to you all as well. Maybe I had apples on the brain all those months ago because it is simply the time of the year for the apple harvests. Perhaps it was that the adage “an apple a day keeps the doctor away” was so meaningful at the time but for sure the idea sparked in me for a reason.
What do you think Johnny Appleseed would think of blue spondylitis apples? I have a feeling he’d approve!
Until tomorrow.
Jenna
Day 361 was created with a few separate images of an old Johnny Appleseed $.05 postage stamp pieced together to make into a square instead of a rectangle as the original stamp was created. Ink and watercolors to give it a bit of paint and color!
*** My Mom asked me to add a note to today’s post that she plans on responding to every comment that you all made on her guest blog post from Day 350 – My Mom’s Perspective. She was so touched by your comments that she wanted to have the time to respond thoughtfully to each of you. I will post here once she’s done in the next week or so. In the mean time she’s says she’s looking forward to the Apple-A-Thon!
A skeleton key has come to symbolize something that can unlock a mystery.
Sometimes I think that Ankylosing Spondylitis will always remain somewhat of an enigma to me.
I wish I could unlock each door I have to pass through on this journey with my health and know what was on the other side. I wish we all had a magic key – an AS key to be a symbol or talisman to help us get through times of change with courage and strength. It might look something like this!
Until tomorrow.
Jenna
Day 359 was created in gold ink and watercolor.
*** I’m stunned and awed by the support that is coming in. A big thank you to everyone who has donated to the Apple-A-Thon fundraiser.
*** We received our first corporate donation today in the amount of $500 from BJC Health in Australia! who will be putting their commissioned apple in the lobby of their Spondyloarthritis Clinic – too cool.
Don’t be fooled by the calendar. There are only as many days in the year as you make use of. ~Charles Richards
Oy!
Every day is made use of even the ones where we rest, reflect, and chill! I remember the days on end when all I wanted was some relief of my symptoms. I know many of you are still in that place and I so wish it weren’t so. I still have those days although they are fewer between. I am feeling a huge responsibility to make sure that I express correctly how difficult most of the days with Spondylitis can be.
Please know I will do my best in my upcoming interviews. If you can express for me how you would say it – it would help me.
“Pour yourself a drink, put on some lipstick, and pull yourself together.” – Elizabeth Taylor
Good plan. Will do!
I’m headed to the mall to shop at Nordstrom’s Rack in the hopes of finding just the right outfit for my t.v. appearance.
Oops – did I let that slip out?
Yes indeedy folks – I will be interviewed on a morning show in NYC the day before the Apple Paint-A-Thon and I need to make Liz and all of you proud. I will pull myself together!
One of my dear and best friends, Stacey is meeting me there tonight to help me come up with something that looks a bit more cosmopolitan and a bit less Colorado dusty back roads. I may even put on a bra! Special times call for special circumstances.
Love to you all for your continued and much needed cheering on. My thoughts with Betsy and her family tonight.
My mom has been with me everyday and at every step through each apple. She has cheered each high and she’s felt my lows probably more than I have. When she told me she was writing about her impressions of the last 10 years I felt a huge sense of relief. I cried when I read her account. The memories are very difficult to relive but I am so glad she found the strength to remember and share.
Jenna’s AS Journey – Her Mom’s Perspective
“Jenna hasn’t talked much about her AS story. I’d like to share my version. I know all of you recognize the common, hurtful threads.
In 2000 the calls from Jen in California were becoming more desperate. Something was very wrong.
Doctors were being of no help and Jen was becoming less and less able to function. In early June Doug was scheduled to be away for a week and when Jenna and I spoke there was terror in her voice at the prospect of being alone for that time. The behavior was such a radical change from Jen’s norm that I flew to California to be with her. During this year she had already experienced two violent viral attacks of the flu and a horrible reaction to nose surgery to correct a deviated septum. Were these triggers?
Now the fatigue had set in.
Then the pain came.
She was working part time and while I was there she had me drive her all over the Bay area to her work locations – since she was sixteen she always drove. This omen loomed large.
Every moment Jen wasn’t working, she was resting in bed, resting while beading jewelry on the couch to divert herself from the pain and fatigue, or sleeping. Oh, and she was eating. Her body craved more and more nourishment. I had a period when I suffered with Pallindromic Rheumatism during which I thought that if I could just eat enough, energy would return and I’d be stronger. The very difficult pain I experienced during that time also allowed me to better understand what Jenna would go through in the coming years.
Since my visit to California
I’ve seen her lie on a chaise lounge in the kitchen with me, because she didn’t have the strength to sit up and we needed each other’s company. We were scared.
I’ve heard a doctor ask about her relationship with her husband.
I’ve seen her taped up by the physical therapist.
I’ve seen her attach electrodes to her muscles.
I’ve seen her get shots to deaden the nerves in her hips.
I heard in disbelief that she drove three hours to pick up a rescue dog – Ella became her all day companion and comfort – a reason to get out of bed.
I’ve seen her get ultrasounds.
I’ve taken her to acupuncture.
I’ve listened to her tranquil music and smelled the aroma therapy.
I’ve watched her buy vitamins in bulk and herbs.
I’ve watched her inject herself in the stomach.
I’ve seen her cringe when one of her brothers hugged her too hard.
I’ve seen her in agony unable to speak and barely able to move.
I’ve seen her wear running suits for two years because anything else hurt too much on her body.
I’ve seen her be humiliated by pharmacists when purchasing prescription pain medication.
I’ve seen her get test after test and search longer and harder for an explanation than anyone I’ve known.
I’ve heard her sobbing in pain.
I’ve seen her back and loins covered in angry, red rashes as we tried to find a new place for the pain patch.
I’ve watched her gain weight.
I’ve watched her lose too much weight.
I’ve seen the pouch under her chin which I know means bad times are coming.
I’ve seen her struggle to remain visiting with the family to watch her young nephews play when the pain is breaking through – now she can paint with Parker and carry Beckett (that was crazy, Jen, but you did it).
I’ve watched her struggle to take care of Doug, her husband.
I watched Doug care give and support and support and support. It’s a tough, tough job. Thank you so much, Doug. XOXO
I’ve watched their distress at not being able to have a child together.
I’ve watched her be “up” for her Dad so he wouldn’t hurt so much at her pain.
I’ve seen her go to primary care physicians, ER rooms, the Medical Center at Stanford, physical therapists, pain management physicians, nerve specialists, rheumatologists (she has a wonderful one now).
I’ve watched when the family pushed her in a wheelchair around an amusement park because walking wasn’t an option – nor was going on rides. She was there to participate with us.
I’ve heard her suffering on the phone in the midst of a bad reaction to a new drug.
I’ve heard her describe having her coccyx adjusted.
I’ve watched the hurt when friends who couldn’t or wouldn’t understand or cope faded away.
I’ve seen her wear her neck brace at her brother’s wedding – thin as a rail – and then watched her lose another fifteen pounds from a negative response to Arava.
I’ve seen her flinch when we went over a bump in the car – she sits in the back so she won’t have to turn her head to talk to us – still.
I heard her desperation when she didn’t test positive for the HLA-B27 gene. She called from the parking lot outside the rheumatologist’s.
I’ve seen her eyes when they were red and inflamed angry and dry from uveitis.
I’ve seen the depression when hope seemed far away.
I’ve seen the skin peeling away from her fingers from psoriatic arthritis (the last link that confirmed her diagnosis).
I know she’s tried NSAID’s, Muscle Relaxants, DMARDs, TNF’s self-injectables, Opiates and other pain killers (pill & patches) , Steroids, Ant-depressants, Anti- convulsants, and the list goes on.
I watched her put on a red hat Doug gave her one time for Christmas and smile courageously at him although hurting all over.
I’ve seen her disappear behind her eyes.
I’ve seen her disappear behind her eyes.
I heard her joy when Remicade was approved for use for patients with AS and start the therapy. I watched her slowly return from the pain and drug fog and laugh more again and start to paint again.
I heard her long struggle to free herself from the narcotics which allowed her to live at all, the drugs which dulled some of the pain; it took her six months and she did it alone, but together with Doug, and the advice of a pain management physician, who didn’t believe she did it outside a hospital.
I watched her struggle to find a job (she eventually got three) after years of not working, when financial times were very tough and holding on to health insurance was a necessity of continued hope.
I watched when holding the job was all she could do. Other parts of life had to wait.
Then
I boggled in amazement when I received the first email saying she was going to paint an original apple every day for a YEAR to raise awareness of AS! What???
I’ve seen her paint an apple a day and write a blog to go with them.
I saw the overwhelming fatigue and, yes, the telltale pouch under her chin after AS Awareness month. In March she was working on three projects for AS awareness – usually fourteen hours a day.
I’ve read so many stories just like Jen’s. Each has their own difficult version of effort, pain, depression, survival, hope and awareness. I’ve shared their emotional distress from my computer.
I’ve read and appreciated many inspirational blogs from AS’ers and people with other chronic diseases, also dedicated to raising awareness and helping others.
I know the financial strain it has been.
I know where the disappointments are.
I’ve seen her keep her goal in front of her to try to reach out to those in the community and beyond, to talk about the positive, to dream her dreams and share them, and to send a helping, encouraging hand. All of which effort is magnified by chronic illness. I know she will go ahead forward after this year.
I’ve seen her grow in understanding, knowledge of the AS community and its struggles, empathy and friendship. She has made wonderful on line friends whom I, too, treasure and who give her courage every day by their responses to her efforts.
I know how overjoyed she was when her brothers said nothing would keep them from NYC to help celebrate her year long journey and asked her to stay strong through to the end.
I look forward to meeting some of you and your families in NYC and to all her supporters whom I won’t be able to meet, her father and I would like to say, “Thank you from the bottom of our hearts for your gracious and moving support.”
I wish Jenna, AS sufferers, everyone who will participate, and the SAA the best finishing/fundraising event ever. Send an apple, paint an apple, bring an apple. We’ll take pictures and post them of the wonderful time we will have.
To all of you who are care givers or supporters of people with chronic illness, I know you understand this story and I wish you courage and patience and I send you a light to shine through your darkness, for the difficult days can indeed be dark for everyone (thank you, Melissa, for that lovely image).”
Until tomorrow.
Susan & Jenna
Day 348 was created with one of my favorite photos of my mom and me. It sits on the counter in my bathroom – a place I can look at it all the time. I tried to paint this apple with every vibrant color of the rainbow. I think the photo captures our relationship. I love you Mom.
Great question! I hope the answers I have will lead to things just as great. Here are a few areas I have outlined. I hope you all continue to follow me as my journey switches focus a bit this fall and in the years ahead.
Here are my plans – we shall see.
1. I’m not going anywhere! I will continue to blog here at The Feeding Edge and work for AS awareness and other health and social issues. My scope will just widen a bit. I’d love to also continue to create occasional “Apples For AS” and support the SAA in any way I can. I believe in what they do and I don’t think anyone does it better!
2. For the last year I have been an artist, blogger, and health activist. I did not focus on making a living. That was not where I wanted to put my energies. I decided to spend the year raising AS Awareness and that took all of my energy – well, along with making apples! Moving forward, The Feeding Edge will become a Social Enterprise. What’s that you ask? From Wikipedia (I know) “A social enterprise is an organization that applies capitalistic strategies to achieving philanthropic goals. Social enterprises can be structured as a for-profit or non-profit.” Additionally the primary purpose of the company is a social aim.
3. So what is my social aim? I will work to assist and learn from other artists who suffer from chronic disease and who wish to establish an entrepreneurial social enterprise for their emotional and financial well being.
4. To the moon and beyond… my loftiest goal is to strive to develop a non-profit organization – The Art For Good Foundation – with artists and social activists everywhere to support issues for the common good. I reserved the domain name months ago – we’ll see where this goes. The Art For Good Foundation will be a vehicle to find ways to do good things for the world through art. It broadens the scope – includes any and all social programs and artists.
Big dreams? You bet!
Until tomorrow.
Jenna
Day 345 was created with watercolor, ink, black thread, and pastels.
***A big thank you to my Mom, Susan Dye, who is helping me organize my thoughts and reining me in when necessary. She will be joining me as my path switches to the above endeavors and helping me administer and manage while attempting to stay retired at the same time! You’ll meet her on Monday – she’s written a post that we will share with you all. When Doug read it a few minutes ago his comment was, “Your Mom is wonderful!” He’s very right on this one – she absolutely is!
