Perhaps you are aware that Marg (aka @girlbeforemirror) has been struggling with a spinal injury for about a year.
For @girlbeforemirror steemit has become a sanctuary in which she could reinvent herself and escape the reality of her illness, even for a moment.
She treasures the interactions here because she is appreciated for what she can do now, rather than be reminded of the limitations placed on her by the sudden onset of a disabling illness.
Marg was passionately engaged in charity work last year in support of survivors of childhood sexual assault.
We have since learned that she has a rare connective tissue disorder that means she probably shouldn't have undertaken the task of running 7 consecutive marathons in ONE WEEK (flying between cities as she went).
Marg running one of the 7 marathons in 2016 with fellow team member Mark.
But those that know her will understand that she sees her stubbornness as a strength.
We’re hoping she will utilise that same stubbornness that prevented her from withdrawing from the event (even after both her knees blew out on the second marathon) to get through this next challenge.
Among other injuries, Marg tore the tissue around her spine. She was readmitted to hospital again yesterday, for the FORTH TIME THIS YEAR.
The spinal issue is but one feature of her complex health scenario. She has a connective tissue disorder
Marg’s been off work for the better part of a year now, with no end in sight
And for quite some time we didn’t know what was wrong. She saw half a dozen different specialists (paying through the nose for the privilege), with all of them dismissing her confusing and seemingly unrelated symptoms as a neurotic woman bitching about life.
This was a very frustrating time, not knowing what was wrong… And not just for her, it’s taken it’s toll our two kids and myself.
The most recent admission with our youngest visiting
Eventually, after considering that it might have all been in her head, we found a group of people online (thanks google) who seemed to have all been through the same thing. The same symptoms, the same weird physical traits, the same mismanagement and misdiagnosis from the medical professionals that are meant to look after the most vulnerable, or at the very least do no harm…
Ehlers Danlos Syndrome and Spontaneous CSF Leaks
What is a CSF leak?
A CSF leak is a doozy. Basically, the fluid you brain floats in inside your skull runs down the length of your spine in a sack called the dura. Dural leaks can be spontaneous, or from some trauma like complication from spinal surgery or even the common lumber puncture used in many childbirths…
What is Ehlers Danlos Syndrome (EDS)?
Bloody good question! I hadn’t heard of it a year ago myself.
Basically the connective tissue is fucked. This can include skin, ligaments, tendons etc, but also arteries, and you guessed it, the dura.
About 90% of our bodies are made up soft tissue.
While the most common feature of EDS is often hyper mobility of joints, it can manifest in many different ways.
People with EDS are more susceptible to spontaneous ruptures of the dura because the tissue is compromised.
In the short period of time that she could get herself upright between hospital stays she attended this year's anniversary fundraiser, and also shaved her head in support of her team, once they hit their fundraising goal.
She has revelled in her community work, but in the process she has become very sick. She hasn't once expressed regret in doing it, and after the creation of our children, she considers it her proudest achievement.
@girlbeforemirror most likely looking at having her 3rd spinal repair (we still haven’t completed payment for the first one), after being admitted to hospital again last Thursday.
The doctors aren't terribly hopeful of it working and have proposed open spinal surgery as the probable next solution.
Marg isn't scared of the surgery. She’s an eternal optimist, or as she describes it, denial and radical acceptance. I think we could all learn from this attitude - my anxiety and panic attacks certainly could.
Her favourite staff member, Molly the therapy dog!
But the truth is, she just wants a dimension of a quality of life back.
Not necessarily the life she had before, she told me going backwards and returning to what you were before is not what life is about.
She wants to be here for our kids. Be at our eldest’s birthday as they become a teenager in a few months, and read bedtime stories to our little one.
Asking for help is hard
Maybe it’s just a male thing. I’ve heard that before - things like “men don’t go to the doctor until they’re really sick or it’s too late” or “real men don’t cry” or “a man doesn’t ask for help, he’s self reliant and can do everything for himself”… I think it takes real balls to let people know you’re vulnerable.
On Marg’s first hospital admission I tried to do everything myself. And I did. Work, getting one kid to school, one to daycare, cooking, cleaning etc etc. I worked myself into the ground.
I also abandoned steemit for the first time since joining some 8 months prior. With no time on my hands for anything other than what was needed to be done.
Having mum in hospital for Easter was confusing for our 2 year old, and really pissed off our 12 year old.
After 3 weeks in hospital she came home and things were still tough.
She was still laid out, fragile and didn’t appear to be very well. I was still trying to hold down a full time job plus do everything for her and the kids on my own… I guess she could see the toll it was having on me. Stress, insomnia, anxiety, depression… So she asked a friend of her’s for help. Some home cooked meals. Such a small gesture made me feel like a fool. How hard is it really to ask for help? To let someone in?
Then after 2 weeks or so she was back in hospital for another two and a half week stay. This time she rallied my (very casual) band members, a bunch of people we knew from the neighbourhood, to bring us home cooked food. I had people bringing the kids & me all sorts of things, like pasta/meatballs, veggie lasagna, pastries, sausage rolls, nachos, soups & breads… I still haven’t had an opportunity to properly thank everyone that helped.
Don’t let them see you’re hurt
Being a stubborn man, raised by an old school stubborn father, I felt extremely uncomfortable letting people into our lives like that. Embarrassed even. I mean, this was a man that taught me that if I was ever hurt not to show it. “Don’t let them see you’re hurt”, and “get up and keep going” were bellowed out from the sidelines by my dad when I played rugby as a kid.
I’ve omitted the emotional and angry rant from this post. I did write it, but instead have tried to keep it constructive and dignified - a very difficult thing to do given the situation.
A sad selfie from one of her recent admissions, pre-headshave.
I have never asked for upvotes or resteems, but @girlbeforemirror needs your help!
And so do I. We have been together since we were teenagers. We are everything to each other. We have propped each other up many times over the years. Asking for help from anyone is new to us.