My life has been touched by some uber amazing women whose passion for life and the way they choose to live it have really inspired me. Some are bloggers, some are not, their lives are all different and they are all special. I feel honoured and privileged that they are sharing their stories and sprinkling a little bit of their awesome right here. May you be wom-inspired!
Meet Rachel Cox.
Let me start with a disclaimer, having an illness or a disability doesn’t make a person inspiring, but the way that person deals with it certainly does. That’s why when I discovered Rachel on the interwebs, I knew she had to be part of this series. She is a loving wife and mother, a gifted writer, a fashion model and she is also living with an invisible illness. I’m so honoured that Rachel is sharing her story here, because it’s powerful, enlightening and inspirational all at the same time and it’s well timed too, because October is Dysautonomia Awareness Month.
Tell us a bit about yourself.
My name is Rachel. On the outside I look like a normal, forty-something Mum. Sometimes I am glad for the anonymity of that. Sometimes, passing as a well person is brilliant because I don’t have to explain anything, I can just skirt the peripheries and get on with things as best I can. But other times, when the struggle is big; it makes me feel so alone, so misunderstood, so passed over. I ache to think of all other people out there struggling like this, too.
I have an ‘invisible’ illness. It’s a neurological condition called Pandysautonomia which is a dysfunction of the autonomic nervous system. That’s the control system that coordinates all our automatic functions. Heart rate, blood pressure, breathing, digestion, bladder and bowel function, temperature regulation and even the way the body manages moving from lying or sitting to standing. People with Pandysautonomia have trouble being upright.
I’ve been various stages of sick for nearly seven years. When I was diagnosed, the docs thought I had a progressive form, my heart had been stopping and the pacemaker they fitted was recording increasing numbers of events. There were times, stuck in my bed that I thought I was on a trajectory to oblivion. I grieved a lot. I prepared for the end, coaching my husband on all the things he would need to know for the kids. Making a record. Making memories whenever we could. Now, we know that my unique variation of Pandysautonomia waxes and wanes, it has as autoimmune origin. This is a brilliant development and may open up more options for treatment.
Right now, I am doing really well with my health. And that is such a wonderful thing! For the first time in years I am active, out and able. There is so much joy in being able to DO things that were out of reach for me before. I’m out of my bed, I’m attending school things for the kids, participating in society, spending time with my loved ones and revelling in the simple acts of everyday life that well people sometimes take for granted. It’s so nice to be able to stand in the kitchen for long enough to prepare a whole meal. To go for a walk. To do the supermarket shop with ease. To go to the loo like normal people do.
There is more to me than my illness. Before I got sick, I was a teacher and a new mum. Our kids are now 10 and 8. Back when they were little, I was teaching a class of gifted poets; blithely going about life in my beautiful city of Auckland, as if normal life was my right. I am creative, I love to draw and paint. I am a blogger and a freelance writer for various online publications. I love road trips and travel. I’m also really tall and roundish… and just recently I got signed by two modelling agencies, here and in Australia, as a curvy model. I would never have expected that at the ripe old age of 41, but it’s great fun! Did you know that in the US, 70% of online fashion purchases are by women sized 14 and over? It’s a growing market (pardon the pun!). I’ve been loving it. This is a stylist fussing over my outfit in a recent photo shoot.
Tell us 3 things you are and 3 things you’re not.
I am strong-minded; thoughtful. And so grateful to be here.
I am not patient (although I am a patient).
I am not interested in the details, much more of a big picture person.
I am not ashamed of my body anymore, I am proud that it has carried me through scary territory and I want to celebrate the brilliance of it.
Complete this sentence, ____________________ changed my life. How and why?
Getting sick changed my life. It made me realise how strangely we prioritise when we are well, because all that really matters is people. Connection.
Getting sick also took me away from my career and gave me the time and motivation to write. I love writing and it has brought such joy into my life to be doing that again. Getting sick also stripped me of the silly issues I had with how I look. I got over my self-limiting body hate. I wish that life lessons like these didn’t require hardship, but it does seem like so often it requires mining the depths before you can get to the gold!
What has been life’s greatest lesson?
For me, it’s never to waste an opportunity to truly connect with people. It’s all about people. There is such magic in discovering who people really are; underneath the face, the lifestyle, the trappings of normality. So many people traverse their time on the planet just yearning for connection. So I make eye contact. Ask how people are and mean it. Sit with conversations. I learn from everyone I meet.
What is your biggest achievement?
That’s a hard question! I’d say mothering my kids, through adversity, with love. They’re awesome people.
But I am also proud of the way my husband and I have hung in there. 60% of marriages where one spouse is chronically ill, end in divorce. I feel incredibly fortunate to be married to a good man for whom marriage means forever. It’s hard work for both of us, but we’re stronger than we have ever been and I am still thrilled to be his missus!
On another level, I am proud of my blog. It has given me an enormous sense of achievement to use my voice and find readers who want to hear it. The blogging community is a beautiful, encouraging place to hang out, too. I feel so lucky to have found it!
What has been your toughest obstacle and how have you overcome it?
Losing control of my bowel and bladder function has been the toughest. It’s not the most debilitating of the dysautonomia symptoms, but it strikes right to the heart of my self esteem and produces so much shame. For me it has been either incontinence or retention. Both are deeply unpleasant. Once, after a particularly embarrassing ‘void’ in public, I cloistered myself away for a bit, afraid of having another incident. Then I decided that I couldn’t hide from something I couldn’t control. I made myself up an emergency kit for the car; clean pants, continence garments, deodoriser and wipes (my own ‘nappy bag’) and carried on. It’s empowering to take charge of what you can control and leave the rest to itself. I’d miss out on so much if I let the fear of embarrassment take over my life. Just getting on with things has been my best lesson about overcoming.
Viktor Frankl says “Those who have a ‘why’ to live, can bear with almost any ‘how.” Everyone needs a purpose, what’s yours?
What a cool question. My purpose is to give voice to the invisible. To shine a light on the very real plight of so many people out there. People who don’t always have the words or the energy to express what is going on for them but yearn for a world that is more kind. I use my words to explain it so that their loved ones and social circle can begin to understand.
What are your words to live by?
Do the best you can.
If you could have any mentor, alive or dead, who would you choose and why?
My Mum was and is my mentor. She passed away eight years ago. I am glad she didn’t see me sick, but I miss her so much. She was an incredibly stoic woman. She battled ovarian cancer with enormous grace and dignity. I learned so much from travelling that road with her that has fed my soul during my own troubles. I often think ‘what would Mum say about this?’ and it helps to guide my response to the big life stuff.
If you could play hookie for a day what would be on your list to do?
All The Things! But I’d most love to dance… and to go on a road trip with no destination in mind, just letting the road take me somewhere new.
You give so much to others, what do you do to take care of yourself?
I keep a short account with my man, we talk about everything, and that keeps our relationship healthy and vital. There’s so much a good relationship gives back, I definitely consider time with the hubster to be self-care!
I have a brilliant osteopath who massages like a maestro and is a great friend as well. Time spent there is better than therapy. We laugh a lot.
I see a health psychologist when I need to.
I spend time with my bestie.
And sometimes I get my nails and my hair done. That makes me feel all ‘put together’ even when I am falling apart!
Thank you for sharing, Rachel.
Let Rachel inspire you a little bit more…
on the blog
on facebook
and on instagram
October is Dysautonomia Awareness Month
