Venom

It’s nearly 10 years since I visited Australia, a 3 month trip that will stay with me forever. One particular day sticks in my memory.

A group of us had booked a 3 day trip around one of Darwin’s national parks, Kakadu. There were 6 in total plus a guide. We hiked through the park, checked out ancient aboriginal cave art, swam in billabongs ate BBQ and drank beer..It was ace.
On the last day we were hiking back to camp we came to a small creek, about 3 feet wide which was easy enough for us to jump over. The guide went first and then we all followed; as I waited for my turn I was reflecting on what an amazing trip this was, then I heard it. A scream, a scuffle and a lot of commotion. Those of us left on my side of the creek were told to stay where we were and not to move. One of the guys had been bitten by a snake, a brown snake. After a few minutes we told it was safe to come across. At the time I had no medical training or experience so of course I was the obvious choice to help the guide, who was a trained medic, in applying a tourniquet. The bite was just above the ankle and didn’t look like much, two tiny puncture wounds…but what the fuck do I know. After the tourniquet was applied the guide had to run back to truck to radio a medevac. I was told to keep the guy talking, keep him calm and try not to let him fall unconscious.

I tried just that. Asking pointless and inane questions and up holding a blanket so as to create a little shade. I felt totally inadequate, completely useless and a little stupid. In essence I was helpless…helpless.

Now the above story is nothing more than fiction. But that feeling of helplessness isn’t. My wife, Marlo, is in a relapse. She was diagnosed with Relapsing Remitting Multiple Sclerosis.
All I can do to make things easier for her are as inane as an English tourist helping a snake bite victim who is potentially seeing out his last minutes by asking stupid and irrelevant questions.

She was prescribed a course of steroids, that in her words, rips your body apart and makes your bones feel like glass. She still finds the energy to get up, get dressed and go to work. She does all this and still looks amazing. She also raises our two children and is writing her second book…yes, second!

It pains me that there isn’t much I can do apart from make tea, hot water bottles and watch Harry Potter with her. It really is testament to her character, and anyone with a disability, that she finds the energy and strength to get through the day.

I woke up this morning with a cold…

The Down’s Delusion

As I read Richard Dawkins apology for his remarks regarding Down’s syndrome/Abortion I could hear a sharp intake of breath through gritted teeth from the Down’s Syndrome community. I could then feel the eyes…. waiting for my (re)action.

I have been a great admirer of Prof. Dawkins for a few years now and It was with great sadness that I read his apology letter.

Richard-Dawkins-007

My wife and I have a two year old daughter, Chiara, with Down’s. During the pregnancy we didn’t know anything of her condition but my wife and I always said that if we found out that either of our children had Down’s (Or any other condition) we wouldn’t opt for an abortion. I could tell you that having a child with Down’s is no different or how much joy she brings to us. I could go on for hours about how much we love her and the wonderful  dynamic she has added to our family. While all of the above are true and self evident I feel they miss the point slightly.

Prof. Dawkins remarked that “if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare”

While I can understand Prof. Dawkins views I certainly do not agree with them.

Is it immoral to purposely give birth to a child with Down’s citing the child’s welfare as your reason? I would have to say no. You could go one further and ask…

Is it immoral to give birth to a child citing the child’s welfare as your reason? After all any child could grow up and be diagnosed with a range of conditions later in life. Autism, Multiple sclerosis, asthma, etc. Of course the answer is no. Having children is a risk, you don’t know what the future will bring.

With the advancement of medical science foetus’ can be diagnosed with a variety of conditions as well as being put in a high risk category for other conditions. Would someone opt for abortion for the latter? Sadly I feel some would. Termination before diagnosis. Execution before trial. Sounds very totalitarian doesn’t it? Something I know Prof. Dawkins is fervidly against.

Since having Chiara I can say that we are happy, as is she, and there is very little in the way of suffering. Except when she’s hungry and she turns into a right little moo cow. Yes I will have to care for her until the day I die… But the same applies to her sister and any future little Loves that may pop along for the ride. Parenting is job that’s 365 days a year, very few breaks, long hours and it lasts until the day you die… and the pay is shit! The parameters have shifted only slightly with extra Doctors appointments, physiotherapy and numerous classes. As for what happens to her after we’re gone… I guess we’ll have to just wait and see what life throws at her. But she will grow up in a stable, happy and loving environment and she will be given every opportunity to live an independent life.

And finally Prof. Dawkins I consider you a champion of the secular movement. Helping society to shed the cloak of religious dogma and bring the truly wonderful world of science and nature to the people. Bringing a shining light to the darkness. I truly hope that one day I can do the same for you… You’re welcome for tea anytime.

 

 

Living with MS

I don’t have Multiple Sclerosis but I know someone who does.

Abigail has been in my life in various forms for nearly 10 years. The first 6 years or so she had almost no affect on my life, but in the last 4 she has been somewhat of a bitch. She’s lazy, she’s obtrusive, she does little or nothing to contribute to our family and worst of all there is almost NOTHING I can do to rid her from our lives. She’s not alone either; she has gathered a group of like minded friends and they’re all interrupting my family’s life. It’s like having a troop of hormonal teenagers invading your home.

Abigail is a lesion.

Her and her friends have taken up residency on my wife’s brain.

My wife Marlo was diagnosed with relapsing remitting Multiple Sclerosis in 2004. She moved over to the UK from New York to pursue a career in music and fashion with her then husband. We met after I auditioned for her live band. An audition which I nailed by the way 🙂 I won’t go in to too many details, and there ARE details, but we ended up getting together after her and her husband separated just over four years ago. After receiving her diagnosis Marlo decided the best, immediate course of action was to head to the pub and order a stiff drink, Gin and tonic I believe. There is something wholly British about this simple act. Diagnosed with life changing disease? World turned upside? not to worry, we’ll pop to the pub for a quick drink. Spit spot, spit spot tally hoe! But I shouldn’t be that surprised, although she grew up in New York she was raised by an Irish mother, an Italian father, Depeche mode and The Cure. She loves tea and half pints of Guinness…She’s probably more English than me.

MS affects around 2 million people and is twice as common in women than in men. There are a whole host of symptoms, but for Marlo she suffers from blurred vision, sometimes doubling, numbness in the left side of her body and pains in her face; which she once described as ‘like someone has stuck a knife into eye and then moved it down the inside of your face’. She also suffers from fatigue. MS is degenerative disease of which there is no cure…Yet! She has to have a monthly infusion of a disease modifying drug called tysabri which significantly reduces the progression of MS, but it’s not without its risks (please see link)

She’s an absolute fucking hero. She is the kind of woman who on discovering her house had burnt down she would calmly say ‘Ok, it’s fine. I’ll call the insurance company while you book us into a nice hotel. Oh it’ll be so cozy’ but she freaks  out when I forget to take the bathroom rubbish out and lectures me about the importance of draining the baby’s bath water BEFORE I take the baby out. She get’s up four maybe five day’s a week and commutes into central London where she works as store manager for Donna Karan, where she puts in a solid 12hr day and is rarely home before 8.00pm. She has also written a book called Awkward Bitch, does talks for various hospitals/clinics/universities, writes and records music, is a mother of two, is in the process of writing her second book AND takes out the bathroom rubbish and drains the baby’s bath water. She never looks for sympathy and never asks for thanks. This is what I admire about her most.

There are times when I forget she has MS, and I’ll sometimes ask too much of her or I’ll snap at her because I’ve been watching the children all day and she comes in from work and has to take a nap, leaving me to make dinner. For that I’m sorry.

In short, she gets on with her life and is determined to fight this fucking bitch tooth and nail and not let it stop her leading the life she wants. She does it with breathtaking confidence, a gorgeous smile and those damn 4 inch heels. I truly do not know how she does it.

I’ve heard people say that life only asks of you what it thinks you can handle. I say that’s bullshit. I say life will chew you up and spit you out, and it it doesn’t give a shit. So you had better be on your guard.

T