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!
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”. 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?
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.
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.
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.
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,