I got married recently. It was a quiet thing. For both The Beardy Guy and I, we had been there before and needed to get married, not have a wedding. We wanted to be true to our values and morals and new fund eco principles too! There were no old friends, no rings, no flowers, no readings, no family. Just a cyclist and a runner as witnesses and 15 minutes of very intense and solemn legal stuff. In which they may have said those words "in sickness and in health, till death do us part". We probably don't think about those words when we get married. Who wants to think about death or sickness on such a happy day? I know my primary school friend Dion did not.
And here he is now living what those words mean. Please read these words and consider a donation. What can £10 or $10 buy as a wedding present? What if everyone who read this donated that amount as a a small wedding present - collectively you have bought a chance to continue someone's life. This isn't like running a marathon, passing on the funds to a charity, knowing somewhere down the line your money goes to a bigger pot that eventually gets to a scientist. The science is done, the treatment is ready and Jo is a real live person who I know will thank you. We just need to get Jo to Moscow. What better present could there be for everyone?
The Story of Jo and Dion…by Dion Russell.
“I, Dion Russell, take you, Jodi Wyatt as my lawfully wedded wife, to love and to cherish, in sickness and in health, till death do us part.” I smiled at her through her veil.
“You may now kiss your bride, Mr Russell,” the Pastor beckoned.
My heart raced as I gently unveiled my bride’s face. She looked so beautiful. I gently bent over and placed a soft kiss on her lips. Jodi in turn embraced me tightly with tears of joy streaming down her face.
“I present to you Mr and Mrs Russell!” the Pastor exclaimed excitedly.
The church cheered.
1 year later…...
Looking back at our wedding day, I thought I was the luckiest guy in the world. I had a beautiful wife, a job that I enjoyed, hopes and dreams. I knew nothing of the condition called Multiple Sclerosis (“MS”). I didn’t need to. I knew nothing of the treatment methods, the excruciatingly long stays in hospitals and the countless specialists and tests. I definitely didn’t understand daily fatigue. I probably still don’t.
What I did understand is that things were now different. With the aid of hindsight, it became obvious that Jo had always had MS, but back then, in the early stages of the disease, it wasn’t something we noticed. What I will say is that Jodi now had a name for her sickness and most times it was mentioned with the term “incurable” before it.
“The doctor thinks I have Multiple Sclerosis,” Jodi stammered down the phone line to me.
“You have multiples of what?” I stupidly replied. “I’m sure we will be alright, I will fix this”, I confidently said.
“It’s a disease of the brain and spine. There is no cure. Most people end up in a wheel chair, like vegetables”, Jo said.
Now I don’t know if it’s a Dion thing or a guy thing in general, but I know that my job has always been to “Fix” things. If the bathroom tap or toilet seat were broken, I’d fix it. If an unexpected expense came in that we needed money for urgently, I fixed it. If the car tyre was flat, I’d fix it. That was firmly part of my job description. Lawns, gardens, spider eradication, bin duty and general fix-it guy.
I can still to this day remember that horrible feeling I had in the pit of my stomach when I heard those words, “there is no cure”.
My wife was broken and I couldn’t fix her. I was defeated.
In the years that followed her diagnosis, Jodi endured spinal taps (lumbar punctures), countless needles, tests, drugs, chemotherapy and horrendous side effects. She tolerated muscle weakness, fatigue, blindness, spasticity, tremors and depression. I think one of the worst things she had to endure was that constant thought, waking up every day wondering if this was going to be the day she had a relapse that rendered her blind or incapable of walking.
The entire time I sat back, helpless, unable to do any more than offer worthless encouragement and help to pay the thousands of dollars a month for the medication.
Then one day in early 2014 while going about my normal work, my phone started beeping and buzzing in a way that was unusual.
I was never this popular.
Countless messages from friends and family saying, “are you watching 60 minutes?” “Have you seen there is a cure for MS now?” and then an excited call from Jodi. “They can stop the progression of my MS, but it is done in Moscow and its expensive”.
I didn’t even ask how expensive. I just said “book it in, I’ll get you there”.
Looking back at the enormity of facing a $100,000+ treatment, I probably bit off more than I could chew. In the following week that thought started to take hold. I remember telling Jo, "we should probably not tell the kids yet”.
She was smart, she told them straight away so I couldn’t back out of my commitment even if I wanted to. One day, after a bad day at school, Abbey made sure I was going to do my job. “You said your job is to protect us. That you wouldn’t let anything happen to your girls…SO FIX MUM!”
Looking back at our wedding day, I thought I was the luckiest guy in the world. I had a beautiful wife, a job that I enjoyed, hopes and dreams. I knew nothing of the condition Multiple Sclerosis.
Here I am now, still the luckiest guy in the world. I still have a beautiful wife and a job that I enjoy. I now have two gorgeous daughters who truly are the apple of my eye. My hopes and dreams have changed. I now know a whole lot about Multiple Sclerosis.
I can’t wait for the day when Jo can wake up like you and I do, wondering whether she should have cereal or toast, rather than worrying about wheel chairs and walking sticks.
I know that with the help of good people, those of you who stuck with me to the end of this verbose letter, I will finally be able to Fix Jo in Moscow.
Wednesday, 2 July 2014
Wednesday, 9 April 2014
A post from Dion
I'm reposting this update from my old school friend Dion as I want as many people as possible to read it. It's my reason to swim, bike and run. And support.
"People regularly ask me what happens when Jodi is sick? I.e. What symptoms occur?
MS is a strange disease. It effects its victims in different ways. Jo deals with the daily aches, pains, tingles, forgetfulness and fatigue well, in fact, people are often surprised when they find out she has MS. If I had a dollar for every time someone said, “Oh really? She looks fine?”, I wouldn’t need to host a GoFundMe page. Maybe that’s the problem, maybe she just doesn’t look sick enough?
At times when Jodi is really ill, she hides away from society, normally too tired to leave our bed, let alone host friends. However, on her recent month long stay in hospital, many visitors got to witness the Jodi that Rachel, Abbey and I often see. The zombie-esque Jodi, high on a cocktail of drugs that are required to quell her MS symptoms, minimise pain and assist her to sleep to get through the next day.
This disorder has introduced me to a world of things I never expected to deal with in this life. Constant shopping to replace the broken plates & glasses, smashed due to the loss of coordination. Fighting with the people I like to call the “ACROD Police”. Those who make visual judgements on whether Jodi is really entitled to an ACROD bay at the supermarket (despite having one displayed) and want to fight me when I tell them what I think of their visual appearance in my own special way. The role of “bathroom door counsellor”. Yep, thats right, I have had times (especially in the early days) where I have had to stand outside the bathroom door for hours, listening to Jodi cry as she tries to build up the courage to give herself that daily injection. Hopelessly trying to convey words of advice and encouragement for her to “just do it quickly”, “it won’t hurt” or to, “think of something else”. All those tidbits of encouragement that I never believed, necessary for her to carry out something that I would struggle with doing myself. The role of “toe holder”. See, Jodi is claustrophobic and terrified of MRI’s. Unfortunately that is a common way for neurologists to monitor the progression of the disease. So against the radiologists better advice I would put on my radiation fall out jacket and hold onto Jodi’s toe, the only part of her body sticking out of the machine. Oh, and then there were the lumber punctures. I shudder to even recall the thoughts.
Still to this day I hear stories of the “funny” things Jodi did or said in hospital. The crazy texts received from a bored patient who went in to hospital suffering the MS symptom of temporary blindness. It is the not so funny things that seem to stick in my mind. The times I have sat up with the kids whilst they cried through the night because, even though they know Mum was "drugged up", they never thought she wouldn’t recognise them. The manic screaming from Jodi to “get her off of me” and “who is that” that reduced Abbey to tears for days. The scared sensation of watching your wife unable to feed herself. That helpless feeling of watching your wife admit defeat at times when she is too weak to even pretend to be strong. Probably the one thing that I found hardest of all was trying to settle Abbey down after she came home from school one day. One kid had asked if Abbeys mum was better. Abbey said, "no, she’s still very sick in hospital". The young boy said, “she will probably die. My grand dad died and he was only in hospital for 2 weeks”. That part shook her up. His grand dad died after 2 weeks in hospital and Mum was already up to 3 weeks? I explained that different people go to hospital for different reasons etc, not all die. She bought it. But what happened next still replays loudly in my brain in a way I can’t seem to forget. Abbey, placid, tiny, 6 year old Abbey, called me out. She looked at me with a face of pure hatred and said, “You said your job is to protect us, that you wouldn’t let anything happen to your girls, SO FIX MUM!” in a scream that still shakes me up. So that is how this page got the title of “Fix Jo In Moscow”. I told Abbey I would FIX it and FIX it is what Im going to do!
I can post this picture because I'm currently 4000km’s from home, just outside of Jodi’s reach. I don’t post it to embarrass her but more so to show those people who haven’t seen Jodi during the hard times, just what they are missing out on. This is the reality of MS. It needs to be FIXED! "
You can support Jodi by crowdfunding for her treatment at http://www.gofundme.com/7jygyg
"People regularly ask me what happens when Jodi is sick? I.e. What symptoms occur?
MS is a strange disease. It effects its victims in different ways. Jo deals with the daily aches, pains, tingles, forgetfulness and fatigue well, in fact, people are often surprised when they find out she has MS. If I had a dollar for every time someone said, “Oh really? She looks fine?”, I wouldn’t need to host a GoFundMe page. Maybe that’s the problem, maybe she just doesn’t look sick enough?
At times when Jodi is really ill, she hides away from society, normally too tired to leave our bed, let alone host friends. However, on her recent month long stay in hospital, many visitors got to witness the Jodi that Rachel, Abbey and I often see. The zombie-esque Jodi, high on a cocktail of drugs that are required to quell her MS symptoms, minimise pain and assist her to sleep to get through the next day.
This disorder has introduced me to a world of things I never expected to deal with in this life. Constant shopping to replace the broken plates & glasses, smashed due to the loss of coordination. Fighting with the people I like to call the “ACROD Police”. Those who make visual judgements on whether Jodi is really entitled to an ACROD bay at the supermarket (despite having one displayed) and want to fight me when I tell them what I think of their visual appearance in my own special way. The role of “bathroom door counsellor”. Yep, thats right, I have had times (especially in the early days) where I have had to stand outside the bathroom door for hours, listening to Jodi cry as she tries to build up the courage to give herself that daily injection. Hopelessly trying to convey words of advice and encouragement for her to “just do it quickly”, “it won’t hurt” or to, “think of something else”. All those tidbits of encouragement that I never believed, necessary for her to carry out something that I would struggle with doing myself. The role of “toe holder”. See, Jodi is claustrophobic and terrified of MRI’s. Unfortunately that is a common way for neurologists to monitor the progression of the disease. So against the radiologists better advice I would put on my radiation fall out jacket and hold onto Jodi’s toe, the only part of her body sticking out of the machine. Oh, and then there were the lumber punctures. I shudder to even recall the thoughts.
Still to this day I hear stories of the “funny” things Jodi did or said in hospital. The crazy texts received from a bored patient who went in to hospital suffering the MS symptom of temporary blindness. It is the not so funny things that seem to stick in my mind. The times I have sat up with the kids whilst they cried through the night because, even though they know Mum was "drugged up", they never thought she wouldn’t recognise them. The manic screaming from Jodi to “get her off of me” and “who is that” that reduced Abbey to tears for days. The scared sensation of watching your wife unable to feed herself. That helpless feeling of watching your wife admit defeat at times when she is too weak to even pretend to be strong. Probably the one thing that I found hardest of all was trying to settle Abbey down after she came home from school one day. One kid had asked if Abbeys mum was better. Abbey said, "no, she’s still very sick in hospital". The young boy said, “she will probably die. My grand dad died and he was only in hospital for 2 weeks”. That part shook her up. His grand dad died after 2 weeks in hospital and Mum was already up to 3 weeks? I explained that different people go to hospital for different reasons etc, not all die. She bought it. But what happened next still replays loudly in my brain in a way I can’t seem to forget. Abbey, placid, tiny, 6 year old Abbey, called me out. She looked at me with a face of pure hatred and said, “You said your job is to protect us, that you wouldn’t let anything happen to your girls, SO FIX MUM!” in a scream that still shakes me up. So that is how this page got the title of “Fix Jo In Moscow”. I told Abbey I would FIX it and FIX it is what Im going to do!
I can post this picture because I'm currently 4000km’s from home, just outside of Jodi’s reach. I don’t post it to embarrass her but more so to show those people who haven’t seen Jodi during the hard times, just what they are missing out on. This is the reality of MS. It needs to be FIXED! "
You can support Jodi by crowdfunding for her treatment at http://www.gofundme.com/7jygyg
Saturday, 22 March 2014
Racing for a reason
It has been quiet on the blogging and twitter front as Beardy Guy and myself wrestled with the concept of events we had entered, an obligation to train, and our desire to actually live a less disciplined sporting life. While I am still heavily involved in Freedom from Torture, the fundraising activities needed to take a rest for the sake of my amazing donors if nothing else. I felt like an athlete without a cause. Swimathon was the first activity in my calendar and while I attacked swim sets and coaching with gusto there came a point where the whole thing felt a bit pointless. I felt like I had been here, and done this. Yes, while I was not gifted with sporting talent, I was endowed with ridiculous stubborness, so enter me in something and I will do it, even if I don't quite complete the training. So what was there to prove?
Enter Jodi.
Jodi is the wife of a primary school friend. Yes primary school, where I wore wrapround netball skirts and sneakers with ankle socks - all held together by velcro. Where you get picked on (a lot) and have a crush on boys with freckles that are shorter than you. I didn't keep in touch with many people from primary school because I moved out of the area, didn't go to the state high school and most of them turned into rednecks that call you names like towel head.
I saw Jodi in the facebook photos of my school mate Dion. Smiling against Perth's sunny skies, in the warm embrace of family. What I didn't know was that that Jodi had MS. It knocked me for six to know that this bubbly family, full of domestic challenges (Dion often works in Perth's nearest city, ie in Indonesia) had this disease to deal with as well.
MS is an autoimmune disease that attacks the central nervous system. As a result, Jodi battles severe pain, fatigue, loss of balance, eye discomfort, hearing & vision loss, muscle spasms, depression and memory loss. The treatment she hopes will prolong her quality of life is not available in Australia and the family have made the decision to have the treatment in Russia. They are crowdfunding the cost of this as they can't bear it alone. At present, $98,000 stands between here and her recovery.
There are people who crowd fund to make movies, there are people who sponsor a child they will never meet, people who put coins in collection boxes without thinking. There are people who put "pay it forward" memes on their facebook page. Now is the time to get a little closer to a cause, and help give a family back its mother and wife.
I'm dedicating my sporting events this year to crowdfunding for Jodi. This will be a 5km pool swim, a 3.8k open water race, a middle distance triathlon (1.2 mile swim, 56 miles ride, 13.1 mile run) and a century ride (100 miles). In return I'd love you to come with me on the journey. I can't tell you how many people write to me and tell me they don't have money - and that's ok (though I urge you to consider that if we all donated a pint or glass of wine we could raise $1000s). But if you've made it this far down the page you are a person of tolerance, compassion and intelligence. Share some fundraising ideas with me: cake stalls, those parties where people come to your house and buy stuff, lamington drives (do they still have those in Australia!?), quiz nights. You may even feel inspired to organise one yourself... Or share this post and follow Jodi's news. Sign a petition for her treatment to be available in Australia. Learn more about the disease. Why? Why should you, why should this matter? It's an awful thing to consider, but if one day it came to my awareness that it was you needing help, I would swim, bike, run and fundraise for you.
With love
Rowena
Support Jodi at http://www.gofundme.com/7jygyg
Enter Jodi.
Jodi is the wife of a primary school friend. Yes primary school, where I wore wrapround netball skirts and sneakers with ankle socks - all held together by velcro. Where you get picked on (a lot) and have a crush on boys with freckles that are shorter than you. I didn't keep in touch with many people from primary school because I moved out of the area, didn't go to the state high school and most of them turned into rednecks that call you names like towel head.
I saw Jodi in the facebook photos of my school mate Dion. Smiling against Perth's sunny skies, in the warm embrace of family. What I didn't know was that that Jodi had MS. It knocked me for six to know that this bubbly family, full of domestic challenges (Dion often works in Perth's nearest city, ie in Indonesia) had this disease to deal with as well.
MS is an autoimmune disease that attacks the central nervous system. As a result, Jodi battles severe pain, fatigue, loss of balance, eye discomfort, hearing & vision loss, muscle spasms, depression and memory loss. The treatment she hopes will prolong her quality of life is not available in Australia and the family have made the decision to have the treatment in Russia. They are crowdfunding the cost of this as they can't bear it alone. At present, $98,000 stands between here and her recovery.
There are people who crowd fund to make movies, there are people who sponsor a child they will never meet, people who put coins in collection boxes without thinking. There are people who put "pay it forward" memes on their facebook page. Now is the time to get a little closer to a cause, and help give a family back its mother and wife.
I'm dedicating my sporting events this year to crowdfunding for Jodi. This will be a 5km pool swim, a 3.8k open water race, a middle distance triathlon (1.2 mile swim, 56 miles ride, 13.1 mile run) and a century ride (100 miles). In return I'd love you to come with me on the journey. I can't tell you how many people write to me and tell me they don't have money - and that's ok (though I urge you to consider that if we all donated a pint or glass of wine we could raise $1000s). But if you've made it this far down the page you are a person of tolerance, compassion and intelligence. Share some fundraising ideas with me: cake stalls, those parties where people come to your house and buy stuff, lamington drives (do they still have those in Australia!?), quiz nights. You may even feel inspired to organise one yourself... Or share this post and follow Jodi's news. Sign a petition for her treatment to be available in Australia. Learn more about the disease. Why? Why should you, why should this matter? It's an awful thing to consider, but if one day it came to my awareness that it was you needing help, I would swim, bike, run and fundraise for you.
With love
Rowena
Support Jodi at http://www.gofundme.com/7jygyg
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