About Kisses from the fight

me and williw

This is not a blog, but rather a promise to a friend who has now lived in the heavens for almost five years.

She told me to write, and so now I am.

My name is Jess, and I am a 22 year old Australian woman living and loving with Marfan Syndrome. I am a Psychology student, a Buddhist,  Mum to a Golden Retriever, daughter to the original Griswalds and everything else in between. I show minimal cooking talent and my joints go out more often than I do.  Life with Marfan’s can be short; But I’m not.

You can learn more about Marfan Syndrome here;   http://www.marfan.org 

18 thoughts on “About Kisses from the fight

  1. Jess, I admire your writing, your spirit, and your willingness to share. I have 19 chronic conditions, but look pretty normal. I should be happy about the latter, but sometimes I get frustrated because people don’t accept my invisible limitations. Your site has inspired me to get a bit more from the heart honest on mine sometimes. Take care, choose joy, and write on! My blog URL is http://mollyjayne40.wordpress.com/ and on Twitter, I’m @mollyjayne40 if you ever want to come say hi.

  2. Thankyou so much for your lovely comment. 19 conditions sounds incredibly diffiult, its never easy when you have an invisible illness, as I do now, I plan on blogging about that soon. Wishing you all the best xx

  3. Jess, I’m assuming you already read my recent post, Downshifting From Overdrive, Accepting Myself ( http://mollyjayne40.wordpress.com/2011/06/23/downshifting-from-overdrive-accepting-myself/ ) , b/c I followed the incoming link back here. Here’s the funny thing, I have a lot of people on my blogroll and I hadn’t been keeping up with others blogs lately so when I was listing people off the top of my head, I thought of you but couldn’t remember your name – which blog was yours. When I started dozing off in the wee hours of the morning, I gave up on going through my blogroll. Bottom line, I’m adding you. I hope you get a few views from it. You inspired me. Oft times I need to hear God’s voice echoed before I take action. Well you were the first vessel of God’s voice to me and Wendy (http://picnicwithants.wordpress.com/) was the second. I’m glad wisdom is besetting you at such a young age. It gives me hope that your future will indeed be “one of welfare, not of woe. (Jer 29:11)”

  4. Hey Jess!! On this wordpress thing, they have these awards and I was nominated for one which I thought you should have. Its the “One lovely Blogger Award” and the “Candle Lighter Award.” So basically all you have to do is write a post with the links of your faviroute blogs. If you don’t want to, thats alright as well 🙂 xx

  5. Hey Jess! My name is Adam and I’m 21. First thing- sorry for my english- I’m from Poland, but even that I have some problems with reading and translating some points, doesn’t stop me to read your blog 😉 I need to tell you that I love it! I can learn from you so much… I came here by the accident, when i looked for piano sheets to play theme for the diving bell and the butterfly by Paul Cantelon. Amazing… 🙂
    I’m generally healthy, but I have mental disorder a little, it’s about story of my life and childhood that I feel a lot of pressure by all world and hard fears connected to many areas of my life. Why am I writing this… I want to thank you. Cause when I read you I can stop my unnormal sense of ungratefullness and these fears growing, I feel like all pressure is getting out and I start to be gratefull and happy, it’s so easy 🙂 So – your blog is my personal therapy, my meditation…
    Just thanks!

    • Hi Adam thankyou so much, so great to have a reader from so far away!! Isn’t Paul Cantelon incredible? Anyway I wanted to thankyou so much for your lovely comment, it really means a lot!

  6. I came across your website through your ‘Chronic Fatigue Syndrome Awareness’ Video. I am 18 and am currently studying at University, not fun when you’re constantly tired and ill and when few people understand the illness. Thankyou for blogging. I find it interesting

    • Yes studying at University can be incredibly difficult when you are Chronically Ill. I am nearly 21 and about to begin my second year of University. If you don’t mind, I would love to send you my email and you can feel free to message me any time. As someone who has already survived a year of uni, I hope I can help you somehow! Much love xx

  7. Dear Jessica,

    Your writing and ideas are very moving to me. There are feelings that help me to pick up and carry on and some which help me feel more human. I am a father and one of our children, Freddie, had a brain tumour at age 4, survived and day by day clawed his life back, to become a funny, kind boy of 13. Like you, we spent a lot of time in hospitals, which won back precious time for living. He had a second tumour just before he was 14 from which there was no chance to recover, but he was loved every day of his life.

    I try each day to appreciate how lucky I am.

    I admire your writing. How you are able to touch the skies whilst being rooted on the pavement. Your legs must indeed be very long….

    • Hello Carey,

      Thankyou so much for sharing such a raw and beautiful story with me. Freddie sounds like an incredible young man. I am so, so very sorry that Freddie’s Cancer returned, and that he wasn’t able to stay here on earth. But just from what you have written, I can tell that Freddie was an incredible young man, who gave life his absolute all. What an amazing young man, who you must be so proud of.

      I feel so lucky that you have shared your story, and Freddie’s story with me. Sending your entire family love and light xx

  8. very well written jess! When I first read this I found it confronting but don’t take it as a harsh judgement at all It’s just how I see this intro. sending huge hugs your way jess.

  9. Hi! I’m a medical student in the UK. I love your blog. I’m currently writing a project on mindfulness and chronic diseases, in particular how people react to being recommended it. Might I ask you a few questions? If you’d rather I didn’t, I would completely understand.

    Best wishes
    Catherine X
    (I’m not the regular sort of med student. I’m 37, have 2 kids and practice mindfulness 😊)

    • Hi Catherine, I would be more than willing to answer some questions for you. I actually feel very flattered, and would love the opportunity to provide a future doctor with some insights into the benefits of mindfulness. My blog email is kissesfromthefight@hotmail.com I look forward to hearing from you, love and light x

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