The Wisdom of Gratitude? #1000speak

Don’t talk to me about gratitude and being thankful for adversity. That worn out line about “what doesn’t kill us makes us stronger” has worn painfully thin with me.

Not that I’m one to complain. Of course not, I’m thankful. Always sunny side-up no matter what!

 

the kids & I

The kids and I taken during my 7 week stint in hospital 2007. Mister was 3.5 and Miss was 18 months old.

I personally don’t see any reason to be grateful that my life has been hanging in the balance for the last 9 years and that my daughter has spent every single day of her life with a mother living on the brink of death…sometimes more imminently than others. My son was 2, so things for him weren’t much better. When I was hospitalised for 7 weeks when they were small, my son stopped cutting, writing and developed acute anxiety…just even driving on a bumpy road: “slow down, Mummy”.ย  When I was in hospital and he looked at me through his huge brown eyes and blond curls and asked “Mummy better?” a knife plunged straight through my heart. We didn’t know if, when or how I was going to get better. So, I said nothing.

I didn’t feel any gratitude at all. I was angry. Actually, angry doesn’t cut it. Enraged. So incredibly sad I could have drowned in my own tears and yet as I fought so hard to save my life, the pain was so intense and I just wanted to die. I know that mightn’t make a lot of sense but who does in a crisis?

chair Umina Beach

So often, I’ve felt like I’m being swept away by the tide and yet I’m still standing.

You hear parents talk about the loss of a child and the unfathomable grief. How a parent is meant to die before their child. However, that doesn’t include the parent dying, at least in my book, when your precious children are still babies and Mummy isn’t even perceived as a separate being but part of themselves. It doesn’t mean children growing up without any memories of Mummy at all and just a bunch of photographs and other people’s words.

That is absolute, pure anguish.

It goes way beyond the disappointment I felt not being able to kick the football to my then 2 year old son or my heartbreak when I was too weak to get out of my chair after breastfeeding our daughter to sleep and my husband would carry her into her cot. Or, when we all had our day time naps and I couldn’t immediately jump out of bed to comfort my crying child because my muscles were literally being eaten away. I couldn’t move.

This all culminated in a horrendous fall at home when I was lying face down on the concrete unable to get up at all and my daughter was screaming, my son was somewhere and my husband was working in the Sydney CBD two hours away. The muscles I needed to get up off the floor had atrophied or wasted away. I can’t describe what it feels like when your very own home becomes a life-threatening battlefield.

However, while I wasn’t grateful at the time, I’m grateful now.

I am very grateful that after months of medical tests and misdiagnosis that my uncle, a dermatologist, finally worked out what was wrong when he saw me at my cousin’s wedding and rang me afterwards and booked the necessary tests. I was hospitalised for 7 weeks 2 days later. I was so sick that he told me to have complete rest. My muscles were breaking down and I can’t quite remember whether all this placed me at risk of a heart attack or what but I was very, very ill…diagnosed with a very rare neuro-muscular auto-immune disease called dermatomyositis.

My uncle literally saved my life.

Secondly, while my diagnosis was nasty and I was told there was a risk I had cancer and I’d be on prednisone for a very long time, I had treatment. This wasn’t a death sentence, although my case was severe and also quite resistant to treatment.

However, as much as the dermatomyositis was resistant to treatment, my medical team has been eternally persistent. I have a rheumatologist. lung specialist and a gastroenterologist who work together to fight this disease. I’ve had transfusions of Immunoglobulin or IVIG for 5 years every 3 weeks. As the disease started to cause inflammation and fibrosis in my lungs, they blasted it with chemo. They have metaphorically held my hand when the disease has flared and things have looked exceptionally grim and they re-jigged my treatment, asked our questions and simply been there for us and done their best. Right through, they’ve known I had young kids and what it would mean to lose their mum and they’ve given our fight their all.

Another reason I was particularly angry when I was diagnosed with dermatomyositis was that this was my second, exceptionally rare life-threatening disease and I wasn’t even 40. I’d been diagnosed with hydrocephalus when I was 25, which may have been caused by a very difficult birth and I’d had brain surgery to insert a VP shunt. I’d lost a couple of years recovering from that at a point in my life when i was supposed to be fun…not thinking about dying.

However, my neurologist has always been equally supportive. I wasn’t alone.

Newton Family & bilbo

A family photo with Bilbo as a pup Mother’s Day, 2007.

Speaking about not being alone, my family has been incredible. Not always perfect or handled things the way I would or would have liked but they’ve stood by me. My mother has put in an incredible effort with helping with our kids, supported by my Dad and brother as has Geoff’s sister and her husband. Friends have helped with minding the kids, lifts, talking them through some difficult moods and providing meals and encouragement. Churches have prayed for us and simply cared. We had support of Muscular Dystrophy NSW and the Myositis Association as well as local support agencies. Scouts has provided the kids with a space that’s fun and physically challenging away from the stress at home and this extra layer of community support and love is helping them to overcome adversity and feel strong in themselves. That they can stand on their own two feet. That they’ll be okay.

I consciously give thanks for each and every extra year I have because I already feel like I’ve exceeded my quota and that I’m well into extra time. Moreover, I’m doing pretty well at the moment.

Family shadow Byron Lighthouse Easter 2014

Our Family 2014- Byron Bay Lighthouse, Australia. The shadow is omnipresent but the darker the shadow, the brighter the light.

Just the fact that I’m still breathing is such a reason to give thanks but I’m not just breathing. I’m able to bring up my children. Be a wife to my husband, even if I am a liability. I can be a daughter to my parents and a somewhat active member of our local community…especially through photographing events. I also have what has become a very rare gift…time. I have always been very career focused and I haven’t been able to work since I had chemo 2 years ago. That would have destroyed the old me but now, in addition to my family, I have my blog, my writing, photography and so much more. All of this being very much proof that even when your world totally blows up and you feel totally decimated, you can salvage good things from the ashes and have so much to give thanks for.

So, even though I still live with dermatomyositis and am down to 59% lung capacity and live with incredibly uncertainty, I am still here.

The reason I am still here is due to medical research, science and my doctors. That even though there isn’t a cure for dermatomyositis, there is TREATMENT. Not just something that will give me an extra few months, and really little more than a delaying tactic…a matter of buying a little more, very precious time. I’ve been living with this for 9 years.

So while I am being thankful for the medical research which has kept me alive, I’d also ask you to think about those who currently don’t have effective treatment options and where funding for medical research is so desperately needed.

A friend of mine was diagnosed with Motor Neurone Disease a few years ago and was given 2-3 years to live and thank goodness is still with us. How I long to give her that magic pill which would instantly make for better, or at least, stop that disease in its tracks. The same with Muscular Dystrophy. These disease are both savage and while there have been improvements, so much more needs to be done and these diseases are so debilitating. Muscular Dystrophy also affects young people. They are the most courageous, inspirational young people I know but they are still young and treatment would make such a difference both for them and their families.

Heart Hands red heart

My son blew me away when he made a heart with his hands. His hands and arms were caked in green paint and I doctored the photo to produce this.

Another point of gratitude, last but not least, I am grateful for God’s guiding hand through all of this. My relationship with God hasn’t been easy through all of this. I have all the questions so many people also going through adversity have asked: “Why me?”, “Why does a loving God allow or perhaps even caused such suffering?”, “Why doesn’t he just pick us up and out of the road of disaster?” These questions are not easy to answer and I don’t believe there is one size fits all solution either. That God speaks to each of us differently, personally in a voice and message we can understand. I remember waking up one morning in hospital feeling so betrayed by God…absolutely rejected. It was like God focused all his wrath on little old me and pointed the almighty finger and ZAP…I was fried. However, it was a bit freaky for in the midst of my tirade with God, I heard this voice: “If it’s good enough for me, it’s good enough for you!”.

At least, I wasn’t being crucified. Things were looking up!

I’ve heard people with disabilties of chronic health issues say that they wouldn’t change their situation. That it’s part of who they are. However, I would do anything to get rid of the dermatomyositis and live without it’s omnipresent shadow.

In the meantime, I am grateful for all the love, encouragement and support I’ve had along the road. Thank you from the bottom of my heart.

Love & best wishes,

Rowena

 

 

 

 

24 thoughts on “The Wisdom of Gratitude? #1000speak

  1. jorobinson176

    I never knew that you were battling such an awful illness Rowena! Your posts always show me a strong and happy woman who is an incredibly loving mum. I hope you just carry on getting better and better. HUGS to you across the old briny! X

  2. TanGental

    Now that’s what’s called being put through the ringer, Ro. I guess it’s difficult to do anything but live in the moment after that. Being so cheerful is a testament to all your strengths .

  3. Midwestern Plant Girl

    You are clearly a strong cookie, my dear! Many folks would have just laid back and let the disease consume them.
    I envy your strength & perseverance.
    Keep fighting! We need you on this side of the grass ๐Ÿ˜ƒ

  4. Solveig

    Wow, I am completely moved by your piece. I had no idea that you were suffering from such a rare and difficult illness. I am glad that your kids can enjoy you fully, I do suppose that you do make sure to live every moment with them to the fullest.
    I do wish you a long and as healthy as possible life with as little suffering as possible.
    Hugs, Solveig

  5. trentpmcd

    Wow, that’s pretty tough. And your uncle – what insight to be able to push you in the right direction! You’ve mentioned in passing things like “mobility issues”, but I had no idea the cause. Thank you for sharing.

  6. Timelesslady

    An amazing post…so good to hear your uncle realized what was breaking down your health. The heart within hands is amazing. Wishing you all the best in your life and many decades to spend with your beautiful children and husband.

  7. Pingback: The Wisdom of Gratitude? #1000speak | 1000 Voic...

  8. roweeee Post author

    Thank you very much.
    I was very touch when my son appeared with his green painted arms and made the heart with his hands. He would have been about 6 I think. He’s been through so much with my health and it’s been hard on him. I was very touched to see this emotion, spiritual side of him and then doctored the image adding in the red heart. It’s only time I’ve done that to a photo. I think I’ll get it printed out for us and for his teacher for Christmas. She’s had him for two years and has been such a blessing.

  9. Yvonne

    Rowena, like several others have said here, I had no realised you were coping with such an extreme illness. That you felt anger at first is to be expected, and allowing that anger is as important as allowing gratitude. All our emotions matter. It’s by allowing those like anger that we get to gratitude.
    I hope you get your wish to be free of dermatomyositis.

  10. roweeee Post author

    Thank you very much, Yvonne. When you wish upon a star…
    Happy Thanksgiving to you! We don’t celebrate it here in Australia but I am still thankful. xx Rowena

  11. roweeee Post author

    Thanks very much, Geoff. Things are very different after going through all of this and I appreciate things so much more. It is also quite strange when you know by rights you probably shouldn’t be here and yet you are. I heard a song a few years ago written by a young local girl and it had a brilliant line: “there’s a reason why you’re still breathing!” I am starting to feel that God wants me to get this book finished first and understands our crazy household well enough to know I need at least an extension. Hope things are going well for you and yours xx Rowena

  12. TanGental

    Whatever gives your life shape is worth focusing on, be it faith, family, friends, ambition, whatever. So grasp it with both hands as you clearly do!

  13. roweeee Post author

    Sometimes, I think I’ve swung from a few too many chandeliers in quite succession. I am taking things quietly this week. Thank goodness it’s cooled down today too. I’m supposed to be practicing for my violin concert on Sunday and I’ve just been crashed out beside the air-con instead. Might be doing a bit of air-violining if I don’t get cracking! xx Rowena

  14. Pingback: Learning About Compassion – #1000Speak | Solveig Werner

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