Wednesday, 2 July 2014

Nuptials: in sickness and in health

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.