030: The invisible disability – Jay Crisp Crow

the-fearless-females-podcast-guest-jay-crisp-crow

In this episode:

In this episode of The Fearless Females Podcast your host Tegan Mathews interviews Jay Crisp Crow who shares:

The story of her invisible disability for the very first time publicly
How she is overcoming her fears of judgment by shining a spotlight on them instead
The battles she faces on a daily basis and how she gets through
The gifts that have come from her disability
How she hasn’t let her pain or her fears beat her

Tegan’s Take Aways:

1.    If you are afraid of something, one way to deal with it is to face it head on and shine a big fat spotlight on it!
2.    It’s a daily decision to not let fear win – to look at it and say, “Nah, I’ve got better things to do than that today thanks” and choose to focus on the alternative
3.    The fear of the pain and the anticipation of what might happen, is often worse than the actual pain itself
4.    You don’t lose anything without gaining something else – look for the gain
5.    Get up each day and be sure to make today better than yesterday

About Jay Crisp Crow

Jay Crisp Crow is a writer squeezing joy from life in the Perth Hills with a scrumptious husband and a tribe of children. Before life as a writer/super mother, she sang on the back of Monster Trucks for a living after becoming too plump to continue as a cheerleader. She juggles disability and small business, and is an advocate for “coming out of the invisible illness closet” as she believes disability can be a positive in small business, not a weakness.

Contact Jay Crisp Crow

www.crispcrow.com.au

Crisp Crow Communications

Jay Crisp Crow

A Gift for Listeners From Jay Crisp Crow

A twelve-page eBook guide to writing the perfect “About” page on your website. As Jay says, “It’s really hard for us to shine the spotlight on things that we are glorious at” so download this wonderful eBook and you will be well on your way to the perfect “About you” page on your website or gift it to someone else that you think might need it.

Download your ebook here

Show Notes: Episode 030: The invisible disability– Jay Crisp Crow

Jay Crisp Crow’s Fearless Story

It feels funny to start an introduction with what I have because I’ve spent so many years kind of hiding it, putting a good face on and pretending it doesn’t exist. I have what’s diagnosed as Chronic Fatigue Syndrome which a lot of people don’t believe is anything, which makes it a little bit tricky to navigate medical professionals, family, the years I was dating, all of those kinds of things.

But it is very, very much a real thing and I know from twenty years of soul searching that I’m not sick because I’m sad! It has definitely been the other way around. The sickness came first and everything else since then has been a coping mechanism.

Yes, it is recognised as a disability but I think I’m in, kind of like an honourable mention in the disability section because the Australian government does recognise chronic fatigue as a disability if it is chronic enough.

Sometimes I want to carry around my test results and put them on a t-shirt and wear them. A few years ago I had a new doctor and I described all of my symptoms and this is what I have been diagnosed with before but I am quite happy to hear if you think it’s something different that I can treat.

He said, “Let’s get all the bloods done” and they came back and he said, “Well, this makes perfect sense because you should be dead!” Basically, everything was at 2% which you can’t even run a car on 2%. But I guess I am in a blessed position where the Australian government does recognise that I am as sick as I am, which means that if my life does fall apart and I can’t go to work, we are very lucky to live in Australia, where I would be void by the government.

I am the mother of three children and my specialist told me to go home, relax and read books and to never have children so I only went back to him when I was too pregnant the first time, for him to give me that speech again! So Jackson is sixteen, Ella is thirteen and Hughie is four.

On a day to day basis I describe it to other people as being like having the worst flu you’ve ever had combined with maybe gastro. So, you know those days when you just feel like, “Oh my goodness, I can’t remember ever being this sick” and “I can’t possibly do anything” that’s how it feels.

Years of that though, I think, make you a little bit hyper sensitive to pain and sickness so I almost anticipate the pain now. So when I go to the chiropractor, or as my little boy says, “The bone cracker”, I’m in pain and all she’s done is touch my arm.

I know that all of those pathways in my brain that say, “You are about to be hurt and you’re about to feel sick”, they’re a little out of whack from feeling in pain and sick for so many years in a row. So, I tend to be a bit of a vampire and I start to come alive a little more at night time so certainly launching my own business has meant that I have a little more flexibility.

One of the hardest things I used to have to do was to be up, makeup on and at school by 8:30am in the morning. It’s just consistent! It’s not like when you break your leg and it’s terrible in the beginning but after about six weeks you start to feel better, it’s just consistent and on the worst days I think, “I don’t think I can do this”. I had it on a day last year when I said to my husband, “I can’t live like this anymore”. Those are the days when there have just been too many days in a row where you think, “This can’t get any worse” and it does! But there’s so much good stuff going on here that’s never really been an option. To not do it.

I think I have a really good understanding about fear and that’s why I was really drawn to contact you about this because I think my fear comes from pain. I don’t think we are born with fear, especially if we live in a country like Australia where we are fairly safe. I think it’s something we learn.

You know, I had a really nice childhood. It was just my mum and I and I did pretty well at anything I tried. I danced from the time I was two and I was a cheerleader for the state basketball team when I got sick. So for me, that fear came with the illness and it just goes hand in hand.

I remember feeling like I had lost everything because at sixteen your whole life revolves around you. I was an A student and then I started failing classes and I lost my job cheerleading because I couldn’t get out of bed and my boyfriend dumped me and I had to crawl to go to the bathroom and there were just so many days that I just sat on the shower floor and cried.

There were about two years that I can barely even remember that were just horrible. It was like somebody had picked me up from this utopia where I didn’t even know how good it was, and dropped me in this war zone, only the war was happening on the inside.

My mum was awesome. I think that’s one of the most wonderful things to come out of it. My mum is an incredible mum. She started taking me to mainstream doctors and we pretty much saw everyone, including some pretty quirky ones.

So I’ve done ice baths, vitamin C, I’ve had MRI’s, I did antibiotics and once I heard another girl who had diagnosed chronic fatigue and she had accidentally zapped herself on a horse fence and felt better. So I went down south to Donnybrook to a friend’s farm who had horses and electrocuted myself on the horse fence.

There was some theory behind it that it shocked your system back into balance. But like I said to you before, I know myself really well and I wonder if that comes from it. I have amazing coping mechanisms. I get up and I chose life every single day and I wonder if an easy childhood doesn’t make for very resilient humans?

My mum would have cut off her arm to have me feel better but she couldn’t fix it for me and I can’t fix it and my husband can’t fix it, it’s just something that I have to deal with every single day, all by myself.

I think that feeling sick every day is like feeling fear because you can’t do things. Like I always think, “Oh, maybe I shouldn’t do that because it might make it worse” so you start to protect yourself too much and I fight against that all of the time because for me the fear is worse than the illness.

What are some of the things you are afraid of?

I’m really afraid of visibility which is one of the reasons I wanted to talk to you. I’m scared that people will judge me. I feel like if I had MS or Breast Cancer, which I am not saying that I want thanks universe. None of us can know what anyone else is going through but if I did have either of those things then people wouldn’t look at me and think, “Oh she isn’t really that sick”.

So I am terrified of being seen as a business owning woman and a mother with a disability and because I feel that fear I have decided that how I am going to cope with that is to shine a big fat spotlight on it. Why not? Let’s try that as a tactic.

Every day I wake up and think, “This might be the day that I might not be able to get out of bed”. A couple of years ago they said that if you have had it for this more than ten years then you have an 80% chance of developing Leukemia and that was terrifying but that research has since gone away.

Most days I feel like I am that human who is crawling to the bathroom like when I was seventeen. But the interesting thing for me is that the fear of pain is often worse than the pain itself. I think that’s because I am so used to feeling the pain and the illness that it just sits there in the back of my mind like a niggling migraine and if I turned my attention to it I would give up and go to bed.

Fearing that pain and that illness is coming is worse. So what I do now in the morning is I go, “Hello fear, what have you got for me today?” and when all of that comes up I simply say, “Nah, sorry, but I have better things to do than that, I’m not doing that today”.

How do you deal with it when it does show up?

I don’t know if I deal with it particularly well. I certainly would never say that I rise above or it’s mind over matter, it’s not. I think it’s just a daily decision to not let it win.

Part of that process is really having to dig deep and have a look at what it’s given me. I know there are things I missed out on because even before I got sick I was studying musical theatre. I had a life path that was planned out that would have been exactly what I had always wanted to do and what I had been training to do since I was two and just out of nappies, that was no longer an option.

So, I lost that but you don’t lose anything without gaining something else and I think being in pain and being scared has gifted me an incredible empathy. I’m not very sympathetic to other people which is probably not a very nice aspect of my personality.

If someone is whining I will often just say, “yeah, you’ll be alright” but I am very empathetic. I absolutely understand what’s happening for you and what are we going to do about it. I use this every day to help other people, women in small business especially, tell their story.

I pick up on the little nuances and the things people say about themselves. I think with all that heightened sensitivity from pain and fear it also gives me a heightened sensitivity to the little glimmers of real message that people say when they speak. I take those and I put them all together in a story and I help them to tell their story.

What are you passionate about today?

Well, eighteen months ago I started my own business. I had worked in private school communications for thirteen years before that at some really amazing schools who let me work from home, sometimes let me bring my baby to school, and I had been pretty lucky.

But I wanted to write every day and I wanted to write things that mattered. Not that every single sales page matters in the grand scheme of things but I wanted to put my name to the bottom of most of them because writing for a principle that signs his name off and pretends that it’s his, gets a little bit old.

So I started it and it’s just gone gang busters and it was terrifying. It was one of the scariest things I’ve ever done. I had a lot of voices in my ear and a lot of them had to do with the fact that I have been so sick and I have always managed to find work places where I can work 9-2 four days a week.

The thought of giving that up! My mum, who has worked in education for thirty years was just appalled that I would give up a career like that. But I thought, I’ve done this before and whatever happens, I will make it work. I was a single parent for six years, nobody didn’t get fed, we bought a house, I can do this.

If it doesn’t work out I will just make whatever job comes across, work instead. I think I’m the queen of making it work. One of the things I found interesting about being fearless. I don’t think I’ve spent a single day being fearless ever!

I think I just morph pain and fear and it makes me a weird mix of fearful and brave at the same time. I don’t think I’ll ever be a fearless anything, and that’s ok. That works for me.

Being fearless is not about being fearless 24/7. When we talk of someone who is fearless we assume they are like that all of the time and as women we are so good at comparing ourselves to others yet what we are seeing is their game face. What I know of you, you put on your game face every day and so that is being fearless.

Most Memorable Moment

The reason I started to make it a point to talk about disability in business was from a bit of a spotlight moment with my daughter last year. I was about six months in and I was about to launch my first website and she was studying Rosa Parks at school.

We were having a dinner table discussion about African American culture and she didn’t understand what passing meant. My older son was explaining to her that it was much easier for some people to pass as white people and live in a world where they weren’t judged.

My daughter turned to me at the dinner table and she said, “That’s what you do mum” and I thought, “What? Do I?” I was so ashamed because I thought, “Here I am rocking along in the world” I had just been published on Huffington Post for the first time, I had held down a family fort, I had parented Ella and my son for six years by myself and I managed to find another man who would marry me.

We had this really nice life. I was trying to resemble something that looked like a good wife and a good mother. All along though, my daughter was thinking that I had kept my illness a secret. I thought, “That’s a terrible thing that I’ve taught her that we should be ashamed of that”. But obviously I had.

They would have all heard conversations of feeling as if it’s not something that needs to be discussed outside of the family because it doesn’t impact on anybody else and people have too much judgement around it.

It’s true that my disability being invisible makes it easier for me to move through the world and it is a blessing and a curse because I can put on lipstick, take a pain killer and go to an event. I can run half day workshops that are really successful and then I will sleep for the whole next day afterwards so I am not limited in the short term.

I took my kids to the colour run last year and I walked the whole five kilometres with them and I just didn’t do anything else for the rest of the week and I threw up afterwards. So I can move through the world without hindrance but I don’t know if I should.

I just came back from Pro-Blogger on the Gold Coast which was an amazing feat for me. To go by myself, get myself there, catch Ubers, all of those things who people who are able bodied find either an experience, exciting or just easy. I just find them exhausting!

I roomed with a really lovely blogger who has a little boy who has Down Syndrome. I was embarrassed talking about my disability in front of her because I thought she would judge me for being capable. And she didn’t, of course!

From my conversation with Ella about passing through to last weekend where I hesitated telling the lady I was rooming with about how hard I found life, which was just honest, not to say I’m not going to do it anymore, just that it’s difficult. It has made me think this is something that needs to be talked about.

Maybe I can be a successful business woman and I can certainly get the job done and it doesn’t matter to my clients if I do the job in my pyjamas and I feel terrible because if the work at the end of the day is brilliant then they’re happy and maybe I can be both and it doesn’t need to be a secret.

What are you working on at the moment that brings you joy?

Life! At Pro-Blogger I spent some time in a workshop with Ed Dale who is an uber-marketer and he started his presentation with, “Isn’t it a good time to be alive?” and my heart just went ‘ping’ and yes, today is a good day to be alive. I wake up daily and have this really odd mix of, “I could just die” and “Oh my goodness I have such a brilliant life,”and it happens at the same time.

I get to write every single day and the fact that I get to write every day and someone pays me to do it is astronomical. Yesterday I got to see Ella at her athletics and every Tuesday is Hughie day where we play dinosaurs and have a nap because he starts school next year.

I also run some online forums for women in business and we talk about fear and longing and loss. When I write copy for them I ask them all the hard questions about taking chances and being brave and stepping into being business women.

I feel joy and I feel freedom because I was fortunate enough to be born in a country where it will catch me if I fall. And I don’t always feel as grateful as I should because I often feel so sick. But I know that I’m doing it and so far, at 37yo, pain and fear haven’t stopped me and so my success rate so far is 100% and that’s going to continue to happen.

Five Fast Fun Fearless Facts about Jay Crisp Crow

Who inspires you? I like people with determination and grit because that resonates with me and so I think everyone because we have no idea what anyone is going through as individuals so the fact that we get up each day and try and ensure it’s a better day than the last one, that’s an inspiring thing.
Favourite thing to do each day? If I could spend an hour each day reading a good book and listening to the Waifs (WA band) then that would be my perfect hour but seriously, I get to write all day and people pay me money to do that so I don’t think there’s anything better than that!
What’s something that still scares you? My biggest fear besides the illness stuff is that my husband will give up because I’m hard work. Not only because I am a woman and I am hard work and high maintenance and that’s just my personality but sometimes I look at him and worry that one day he might want a wife that can play mixed cricket or will vacuum the floor for herself. I think getting a second chance with kids and disability in tow and being the kind of woman that I am where I want magic and laughter, or a nap and you have to guess which one it is. He is, without a doubt, the best man I know and I would be devastated to lose him.
Favourite technique or app or book? I love reading so anything that you can escape into, that will take you away. If you’re friends with pain, then you can leave pain behind when you go into a book.
If you could wave a magic wand and fix one thing in the world right now, what would it be and why? Just one thing? I think I would give everyone an internal button to press to see the flip side. I have come to believe that life is perfectly balanced but we just can’t see what’s on the dark side yet. Not positive thinking because I believe that’s an unbalanced way to look at the world with hope but grateful thinking. I’d like one of those buttons so that I could press it and then realise what I am missing.

Final Question for Jay Crisp Crow

If you could turn back time what’s the one piece of advice you wish you could give your fourteen-year-old self?

Besides, “Don’t kiss that boy and get glandular fever” it would probably be that you are about to learn that you are infinitely more capable than you believe yourself to be. So stay kind and stay calm and pay more attention in English literature class because you are going to use that information a lot in the future.

Where can people reach out to you? www.crispcrow.com.au

Facebook – Crisp Crow Communications