Everybody loves giving. I personally enjoy that warm fuzzy feeling I get when I see the happiness that I have brought someone else. I’ve always really wanted to be helpful. It made me feel like a good person. And whilst my actions rendered me a good person, I was worthwhile.
Chronic illness, however, makes this difficult. The other day I was riding on my little electric mobility scooter, through school, and I heard a soft clinking sound. I looked up to see a girl had dropped a couple coins. I didn’t see her face, but she was on the phone and clearly feeling flustered. Healthy Jenna would have rushed to her assistance.
I, however, was forced to notice that she was standing at the top of a medium-sized flight of stairs, which I would struggle to climb. I realised that bending down to pick up the coins would be just as much of a challenge, and that they had scattered as they fell and lay reasonably far from one another… which meant more walking. In short, I saw that were I to rush to help this girl, I’d be left gasping for air, collapsed against the perfect whiteness of the nearby wall.
So I stopped. Looked for a moment. And then for the first time in my life, I drove on.
I guess this doesn’t sound like such a big deal. To be honest, the girl only dropped 3 or 4 coins, and had probably picked them up before I reached the next corner. She has no idea the impact that her moment of clumsiness had on me. But for some reason, this incident stuck in my head, and I have spent the past two weeks trying to reassure myself about it.
Why? Because it represents something I’ve been struggling to come to terms with lately – that physically, I simply can’t give as much as I used to. Giving has always been my way of affirming my worth as a human being, reassuring myself that I am an intrinsically good person.
Instead I am left in a situation where, in terms of small, everyday physical tasks, I am dependent on others. I am in a constant state of gratitude at school, as my peers help me carry school bags and lunchboxes around, but also a constant state of guilt, for needing them to.
Eventually I might even be comfortable with accepting the help I get offered. In the meanwhile, I suppose, I’ll find other ways to give back.
Dear Jen
We love you and can’t wait to see you soon.
So excited to hear the single. We coming to the Table of Unity tomorrow to hear Kristi sing and your beautiful song. Niqui, Kola and Ella and me xxx happy Saturday, I trust you are enjoying this glorious weather xxx
Darling Jenna
You are an inspiration to us all.
We love you so very much, and celebrate the magnificent young woman you are.
With all our love.
Always
Foz,Leon&Matt
Just thought I’d let you know that I love the website, and that I’m there for you for every single step of your difficult journey. I’ll admit a tiny bit of me also wanted to be the first person to post a comment. Keep strong.
Lots of love,
Alex
Beloved Jen
We are so very proud of you and it is a great privilege to be walking alongside you, Kristi and your mom and dad. Your courage and determination in the face of the many challenges that come with diagnosis of this hideous disease has been remarkable and you are a daily inspiration to us all.
Taking the decision to go public and share your story with the world is big and can be overwhelming; and I know that you, Kristi, your mom and dad, and everyone else who has helped set up the site and your public identity, has done so with the utmost consideration, creativity and care. Congratulations to you all – the site is beautiful, easy to navigate and filled with content that allows the outside world to learn more about you and the exceptional young woman you are.
One of your many gifts is your extraordinary ability to connect and engage others through the power of words – always so specifically selected so that you are able to say exactly what you mean with breathtaking eloquence. Thank you for sharing your story, your intellect, your beauty and intelligence. I know that your courage and generosity in this space will help many people.
I know how important it is to you to make a difference. You should know that you do – all the time. As you are discovering for yourself, there are many ways to give back that have nothing to do with your physical capabilities or limitations.
You are much admired, adored and celebrated by every person who knows you and now that you are extending yourself to the world – your courage will be rewarded with the even more love, respect and gratitude. You are a blessing to us all.
Love you
Shirl, Natalie and Kola
xxx
My darling Jenna, I love you so much. This website is a wonderful idea, and so beautifully crafted and easy to navigate. Just to say, I will always be here for anything you need. (But you know that:) Thank you for being one of my best friends-you are always kind and thoughtful to others, despite what you are going through. That sort of behavior is inspirational-honestly, as there are so many other people who use their circumstances as an excuse to be narcissistic and nasty to the world. So thank you. Really 🙂 <3
So Jen,
I tried to post earlier and with my technologically-challenged brain, I failed. So I am sorry if you have two posts from me and I have not seen the other one. 😉 This website is such a good idea, and it is amazing-very easy to navigate and all. I just wanted to say that I love you so much, and I will always be here for anything you need (but you already know that). Thank you for being one of my best friends over all these years, and for being so kind and thoughtful towards everyone, in spite of what you are going through. It really means a lot to be as goodhearted as you are in a world were so many people use their circumstances to excuse narcissism and nastiness. You prove that that sort of behaviour does not have to be acceptable. So thank you Jen 🙂 <3
Hey Jen!
It’s Ange here, Aniko’s friends from Australia!
I am absolutely amazed and in awe of your positive attitude, you truly are an extraordinary girl! You looked so gorgeous at your formal too by the way 🙂 I’ve been thinking of you lately and am so impressed by all the work you’ve been doing despite the challenges you face!
If I’m ever in Cape Town I’ll be sure to give you a call…
Lots of Love xxx
Heya, I’m just a random that got here through facebook and felt compelled to comment here.
From what I can see portable ECMO tech is very young at the moment, but not impossible. A heart/lung machine does exist for patient transfer, but that’s for patients experiencing cardiovascular/respiratory failure.
I’d be interested to know if some kind of nerve inhibiting treatment exists, as if the nerves causing the muscles to contract around the arteries were sedated or destroyed (not sure what repercussions of completely disabling them are) there would be no stimulus triggering hypertrophy of said muscles. Getting rid of collagen build up would be a bit more difficult though.
In my opinion it’s a matter of time before permanent arterial port tech and VV-ECMO become advanced enough to become an internal device like a pacemaker, so keep your chin up.
If you value autonomy and like dogs there are service dogs available here. They can carry your stuff, among many other things (http://www.guidedog.org.za/service-dogs/). Biggest cost here appears to be a flight to Joburg to get trained on how to communicate with the dog properly, the actual dog costs R5.
You sound like a nice enough person, so you can take solace in the fact that people enjoy helping you. Like you, most people base a good deal of their self-esteem on how they impact others’ lives – you’re essentially giving those around you a reason to be happy to be the person they are today.
If anyone is interested in the things mentioned above, here’re some links. (http://pastebin.com/EZNNt67E)
Good luck.
Jennakins, you are such an amazing person with an incredibly positive outlook on life. You only have good things to say about everyone and you are one of the most loyal people I know. You are so talented in so many areas yet so humble and grateful for everything. Stay positive.
Love you dearly,
Margs, Craig, Tayla and Nic xxxx
Dear Jenna I love your story! Stay strong my darling, you are an inspiration to all of us and give in so many other ways. Your illness and the way you cope gives so much intself. It gives perspective and so much more.
Love you
Craig
Dearest Jenna – what a brave and beautiful young woman you are. I still carry many dear memories of you as a young and aspiring young writer in my Grade One class. I have been truly blessed to have taught both you and Kristi.
Always remember that we do not receive reward for the good deeds we do, it is by grace that we receive the gifts of love and forgiveness from our Maker.
I am truly proud of you. My prayers are with you and your wonderful family. I shall be following your blog with love and great interest.
Blessings to you always
Avie Macé
Jen and Kristi – to watch the two of you at the table of peace and unity today was a moving moment for me. It was a sublime performance and I could see Helen Zille’s face smile as she let your beautiful song wash over her. I think you made some new fans today! Well done. Love you both. Mary.
Dear Jenna. You don’t know me but I wanted to let you know that I think your website is wonderful. The best part is your personal blog. Its really brave of you to share your story with complete strangers. Anyone who reads it can only be moved by your courage in dealing with your illness. I heard about your story, when I saw you on the Wedge beach in Plett in January. You were there with a group of your friends and a young man carried you to the water. I was very stuck by your beauty and your softness. You seemed like a kind, sensitive person and very loved by your friends. It’s an honour to be allowed to be part of your journey through your blog.. So please don’t stop..! All the best, Veronique.
Dear Jenna,
I had no idea that you were afflicted by such an unfortunate illness. It’s really heart-breaking to find out but I know you are such a strong, wonderful girl and you’ll overcome any obstacle that comes your way. I just wanted to say I’m thinking of you and hopefully when I’m in Cape Town again I’ll get to see you. Sending love from The Hague <3
Jessie
Dear Jenna,
you are an inspiration to other kids your age and, for that matter, to everyone around you. we wish you the very best. you are such a beautiful girl, inside and outside. Much love, francoise
Dearest Jenna
Brave ,bright, inspiring are but a few of the words I have in my vocabulary to describe you. Over the past 8 years or so I have seen you develop from a shy 10 year old into a beautiful,self assured,gentle soul whose first priority seems to be (to me anyway) the welfare of other people. You are a true inspiration to everyone around you.
Much love
Jean
Great site Jen! You are one special girl. You drive Chase like a crazy person though. 😉 x
Hi Jenna
You don’t know me, yet I know your parents and grandparents and family in Sydney, where I now live.
Looking at this site, and it strikes me what a powerful person you are. Many people lose their power, or don’t even know they have it. You have found your power in the face of adversity, and for that I give you FULL respect.
There’s a quote that I often use in my workshops, to remind people how powerful they really are:
When you understand that what most people really, really want is simply to feel good about themselves, and when you realize that with just a few well-chosen words you can help virtually anyone on the planet instantly achieve this, you begin to realize just how simple life is, and how powerful you are.
Rock on and be strong
Richard 🙂