Day 298 – Split In Two

Art Apple - Day Two Hundred Ninety EightI’ve been sitting here trying to come to grips with what I’m feeling.

I’m tired – but that isn’t a feeling.

I’m tired – of making apples.

As much as I love what I’m doing – and I do love it… I’m tired of so much of all of this.

Is it ok that I just admitted that? I’ve been criticized for being too optimistic, too positive, for sugar coating things and for not talking enough about AS. Well – guess what I have to say to that… I DON’T CARE. I’m doing this for me as much as I’m doing it for what I believe in. If that causes some to question my motives well, I can do nothing about that.

I’m happy, I’m optimistic and I have AS – it is possible. Oh, and so you know – my head is pounding, my neck brace is on because my neck is killing me, and I feel like I could sleep for a year right now. Does that make everyone happy – I just bitched about my AS.

I will make every gosh darned apple no matter how much my neck hurts, no matter how tired I am, and no matter how much I’m criticized. I set out to do this – for so many reasons – one of which was to prove I could accomplish something regardless of this stupid disease. Yes, that I could do it. It is a personal journey, a very solitary journey at times, and I’m tired of being misunderstood. My heart is aching and split in two. I just wanted to do something good for myself and a few others along the way.

Now, my pity party is over. This is the only time you will ever see it – that is MY way. It should be respected as much as someone else’s way.

Until tomorrow.

Jenna

Day 298 is a collage made with watercolor, graphite, and a few scraps from my old dictionary.

18 Replies to “Day 298 – Split In Two”

  1. Jenna,

    Don’t think for one second that you have to explain yourself. To be hopeful and optimistic in the midst of pain is to be admired. I just recently found your site and LOVE your Apples for AS project. Thank you! And you’re right, it is your personal journey, but you’re also touching so many others (like me).

    Thank you again for your honesty. Keep painting those apples!

    Much Love,
    Kim

    1. Kim,
      What a lovely surprise it was for me to *meet* someone new by way of a comment. I can’t wait to get to know you – you sound a lot like me. And I love the name of your blog “thrive out loud” – Let the world see it and shout it to the roof tops – “I AM OK!”

      I will keep going – thank you so much for your support and encouragement.

      xox – Jenna

    1. Thank you Irwin! – a little glimpse into how emotional stress can affect us 🙂 I’m doing much better now – just needed to release that to the universe and move on!

  2. Optimism is one of the best ways to deal with this disease. If you are stressing out, that is when you will find yourself in the most pain.

    Your motives for doing this are truly inspiring, and you should be commended, not criticized.

    1. Vic, I agree. The worst flares I get are in times of great stress. When we start to see this connection – our loved ones freak out when we start to be under stress. Poor Doug this last spring was so worried about me and thankfully because of him – I made some changes for the better; to relieve some of that stress. He could see it when I could not. That is part of the reason I wish our friends and family would learn more about this part of our disease – so that they can help and watch out for us when we get into the whirl. I am thinking of meditating – which I haven’t done since college. Take a moment each day to focus on clam and peace. I’ll let you know how that goes! 🙂

      Big Hug!
      Jenna

  3. Thanks for all the days you gave me something to look forward too – BUT PLEASE DO NOT MAKE ANOTHER APPLE – i think I will not subscribe anymore – so that I am not the reason you are not sleeping. I hate being alive – that is my AS – and please no one should go out of their way for us – we are all dying of pain – who cares, right? I do not

    1. I’m so sorry that I upset anyone. It was never my intention and if I don’t sleep or I’m upset – it is on me, not anyone else. I cannot stop thinking of you and pray for you to find some relief and support. I do care and I am here and I am going to do all that I can to keep going – I hope you do to.

  4. Hey, Jenna,

    Hang in there! No doubt in my mind that you can and will finish your journey. And also no doubt that your intentions are above reproach.

    My husband and I often do things for no good reason other than it might help someone. Many people have ulterior motives for their “good deads” so they are quick to be suspicious of others.

    Someone told me, “No good dead goes unpunished.” LOL Hang in there, Sweetness. Only a few to go…fewer than six dozen! About one-sixth of the journey left. SIX is the magic number!

    Grace

    1. Hi Grace,

      Thank you so much! Thank you for having faith in me and belief in my intentions. It has been a bit of a shocker and wake up call to me that the world isn’t all love and roses! You’d think that with living with AS I’d have learned the lesson but…

      I will adjust and keep on keeping on!

      Big Hug! Jenna

  5. Ms Jenna,

    I will MISS your daily apples when the year is over. I do not have AS but my daughter suffers daily and your art and messages give me a bright spot in my day. These apples encourage me to be positive and compassionate for my precious daughter and others who suffer.

    Hang in there and know there are some good apples out here and ignore the bad apples. Besides bad apples only shrivel up and look ugly with age.

    Now go cut your apple across the fat tummy (horizonial) and see the bright star you are to me and others.

    Judy

    1. Hi Judy,
      I’m thinking I might have to create apples for the rest of my life! Maybe not everyday but I’m also thinking I have a huge urge to write a cookbook for people with AS – apples would be included! And – for this project I put the restraint on myself to make them all in 2D and in the 5″ square size. I have thoughts all the time of what I could create that goes outside those lines! So, we’ll see what happens but I’m thinking I’ll be around!

      Thank you for commenting and lending support. I am learning to try to not worry about the voices and focus on what I can do and what feels right for me. I will definitely be doing an apple cross section – stay tuned!

      You are a wonderful Mom to look to understand AS for your daughter. I know that I am closer to my Mom because she has been empathetic and worked to understand and support. It makes our lives better and easier.

      xox Jenna

  6. You are an inspiration to me! Have whatever feelings you need to have! You are still human, even with having AS. If you need to have another ‘crappy’ day, please feel so to express it. We’re all behind you, 1000000% xoxo

    1. Kelby,
      Thank you for saying to have the feelings – and “crappy” days are allowed – LOL even for the perky happy types like us!
      xox

  7. So many people have been saying this lately – not just chronic illness people like you and me – from all different blogs. At least we are being honest. I was in hospital last week and am still very run down and can’t even think of ideas to blog. I feel like i am spread really thin.
    One thing I might do is post a photo I love (everyone loves a good photo.) I am also a very positive person ( at least every morning until the fatigue hits) and work for GNN Good News Network au where we wil soon be linking to people with positive “illness” blogs like yours.

    1. Lee,
      Thank you for stopping by – all the way from Australia! I don’t know maybe we’ve hit maximum impact with blogs and they are now being created and written in a less personal way so that the criticisms made by others flow more quickly thinking that our blogs are a business entity now a very personal form of expression. I think the only way to get through chronic illness is learn to accept it is our cross to bear and move on and declare to our inner critical voice – “This IS WHO I AM” and I’m fine just this way. When we can let this be inside us – we can build a life with our limitations and stop thinking of what we might have been if we didn’t get sick – and let the thought or idea of that person go. Then we might have a bit of peace. Hope to see you again – and I’d love it if you linked to my site! – Hang in there and stand tall as we say in the AS community! – Jenna

  8. Big hugs. You inspire me and I get you!

    I only regret not being a more consistent cheerleader for you & your apple project.

    You rock, girl. Proud to share a name with you!

    1. Jennifer,
      Thank you 🙂 I’ve been feeling a bit “un-getable” lately LOL! You have been there for me – I have felt you there with me. Life with AS is so difficult and you need to do exactly what you need to do for you and your family. I respect you so much and I know you are cheering me on! I’m proud to share a name with you too! – Jenna

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