Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

The Pain Never Stops – by Julian Thompson (my husband)



The Pain Never Stops – by Julian Thompson

Driving to work today after dropping my 4 beautiful kids to school, I again felt the pain of forebode and anxiety, that lives in me constantly.

I never thought I suffered from anxiety and depression before Duchenne, but on reflection to my childhood I recall times where I literally froze and panicked. Going into Year 2 at Collaroy Plateau Primary School and being taught by the “toughest” teacher there was, made me panic and was a good example. Running in cross country races and doing athletics literally made me sick with fear and worry that I would not achieve what I wanted to. Waiting all day at a district carnival for the last race, the 800m, made me feel the same. It made me want to run the other way. Even in my early career in financial markets, I recall crossing the Sydney harbour Bridge on the way to work as a trainee FX Broker, and the panic would set in and make me want to go and hide.

However, on Father’s Day 2006, the news of my boy James having Duchenne muscular dystrophy turned me upside down, shook the hell out of me, and I have never truly righted myself ever since. A “good day” is now one where I am generally with my close school and rugby mates, who I trust and love, where we slip back into routines that we have been doing for years, and that time together helps me temporarily forget the pain I feel and the reality that I will most likely be burying my son far too soon.

Never far away, though, is the “Black Dog” and the feeling that if I don’t pay attention he will rise up and bite me again like he has in the past. I hate it, it makes me scream. I hate that the “normal” I once knew is no longer and never will be within my grasp. I hate that no matter what I do in terms of taking on the fight of Duchenne, I will not beat it. As “animals in the jungle”, our flight or fight instinct would have us back out of a fight that we knew we couldn’t win. The Chinese philosopher Sen Zsu” wrote that “ Every battle is won or lost before it is entered into”. Well, I wake up every single day to go to battle in a fight I know I will never win. It really does take its toll, and I constantly feel like a shell of the man I see in the mirror. No matter how successful an event is, or the amount of money raised, there will always be a disconnect between the outcome gained and the outcome required to take away the sadness.

There have been days, too many of them in fact, where the pain and depression and anxiety hurt so much that I have had dark thoughts that are not healthy. Thoughts that will stop the pain for me, but of course create even greater pain for those I love. And yet every morning, I wake to the alarm, look at the picture of my beautiful wife and 4 gorgeous children, and tell myself that “you will never, ever, ever give up”. I remind myself that I was brought up as a fighter and I have to keep going. Duchenne is not just a word, it is not just a disease that sees boys not being able to walk. It is so much more complex and taxing on every level. It is brutal. It never quits, and no matter how hard you fight it, you feel like you are fighting a constant retreat.

So how do I deal with these feelings of sadness, depression, and constant grief, you may ask? I have found that the best thing for me is to stay in the fight, and not turn my back on it. The establishment of the Tour Duchenne in 2009, as well as other fundraising events, keeps me “busy”. After holding out for the hope of a miracle drug that might reverse, or even stop, Duchenne in its tracks, and then feeling the sense of let down early in 2010, I had a realisation. I realised that for me, personally, it is better not to focus on the science or sit there all night researching what “may” cure this disease in 5 to 10 years. But I hope that when they do find a cure, I will be one of the first they call. To hear a professor tell me on a conference call that the $900,000 my friends and I raised on a bike ride was “not really a lot of money”, made me decide that the effort I put in will be focused on the care, services, respite, assistance with equipment, and all the day to day needs of the Duchenne community.

That is what the Fight Duchenne Foundation is all about, and why it has been established. To allow the efforts of me and my network to make a tangible and real difference where we can. There have been people on my journey that miss the point, and question what I want to achieve. These people and their doubts are so toxic and fatiguing that I have absolutely zero time for their negativity, and I do not want it around me at all. The Duchenne train left the station for me on Father’s Day 2006. A lot of people boarded that train with me, and have been along for the ride ever since. They are my friends, the ones that gave me the undivided support, loyalty and love that has not only figuratively, but literally, kept me alive. Without them coming to the aid of a mate, I would have been but a memory to a lot of people who now read this. But then there are those who have jumped on the train and found themselves to be generally incompetent, or have missed the point of what this is all about, and who have wanted to pull the safety break. To those people I want to say – this train isn’t stopping and it is time for you to make your way to the nearest door, and throw yourself off it.

I could have easily set up a Trust Fund for my boy James alone. Over the last 10 years, with the same support I have received, I could have raised enough funds to allow James the life he so richly deserves. Instead of owning a home, we rent. Instead of providing him the extra comforts and experiences he deserves, we go without. We watch our friends take great holidays and go camping, we watch families and siblings take on so many adventures like hiking and skiing and surfing. All those same things that we did as children and desperately wanted to do with our own family. But, due to this disease, my boy James misses out, and his siblings go without also. That’s cool. My family are learning about humanity, and the love a family requires, but it doesn’t make it easier on a road that is already difficult. So instead of having a bag of money for the upcoming car purchase and modification, the wheelchair costs, the renovations to a home, the pool & home hoists etc, we have nothing prepared for him directly. But I am trying to drive a community to rally around all the Duchenne families and not just ours. I may be doing it all wrong, and perhaps I should just focus on James, but if we all did that in this situation, nothing would get done, changed or fixed.

The way I look at the life we have been “dealt” is this – my boy James is the inspiration to make a difference in so many more lives than just his own. Families on the same journey as us will be touched by my boy through the work that I do and the life that he has lived. Fight Duchenne Foundation will allow a legacy of James’s life being more than another statistic of a life taken too early by Duchenne. It will be my life’s work, no matter what the outcome or the longevity of James’s beautiful life.

All I ask is this – trust in what I am doing, and what I will create. Help if you can, and be there when I ask again for your assistance. Please don’t doubt me, and what I am doing. This is my survival mechanism both emotionally and literally, and through my own highs and lows this is my vocation and calling. This keeps me living.

Tomorrow the pain will be there again. And watching my boy not being able to get into his own bed will make the pangs of anxiety, sadness and depression appear yet again and that “Black Dog” will be waiting at my back door. But my alarm will go off, I will rise, and I will do my best. And I hope that one day, what I am working towards will come to fruition, that the world will see James Thompson is living a life with greater purpose and honour and has given the inspiration to allow so many more families more hope and happiness in their lives than they enjoyed yesterday.

Love Julian

  • Annelie Johansson - I know that pain. I have twins, both diagnosed with duchenne. I hate duchenne.ReplyCancel

  • Brid Murray - Well said Julian. I feel your pain and I’m sure that’s the way my husband feels too. We too don’t collect or fundraise for ourselves but for our local organisation. Some goes to research but most goes to enhancing the lives of boys and girls with DMD, buying equipment, summer camps, respite etc. We also feel that’s the biggest need once the kids get older. Well done to you. Hugs from Ireland xxReplyCancel

Your email is never published or shared. Required fields are marked *