What 2021 has taught me

By the look of my scant Instagram profile and my dilapidated website, it’s obvious that work has taken a back seat for me for the last year.  I thought I’d better explain myself.   I want to share some of what’s been happening for the last year, but also, and more importantly, to open up the discussion around some issues that many women go through but that most of us keep quiet about.  

Let’s go back to the start of 2021.  I was ill.  I had no idea what was wrong with me.  I was tired all the time.  I couldn’t get through a day without a nap and for at least a week out of every month, I was in so much pain that I couldn’t walk.  Most of the time I felt like my body was filled with concrete.  I had blinding migraines that lasted for days, my hair was falling out in clumps, and there was a pain in my side that felt like a tennis ball wedged into my pelvis. 

I called my doctor and asked for some tests.  I told myself that I was just being lazy, and that a normal person would just push on through it, and that the tests would all come back normal and that I’d have to admit that I was simply slacking.   I felt like I was making a fuss and that the doctor would think I was being dramatic. 

The results of the blood tests indicated a simple iron deficiency, easily remedied, but my doctor decided to send me for some further checks just to be on the safe side.  Because of COVID restrictions I was sent to a clinic in Glasgow rather than my regular GP.  I arrived ten minutes early for my appointment, and took my seat in the socially distanced waiting room, thinking this was all routine and it would be over and done with in half an hour or so, and I’d be able to get back to the studio and get to work.  I watched the hands of the clock edge further towards the time of my appointment and felt a creeping sense of panic.  Dread spread across my chest and arms and legs and the voice in my head said, “RUN!  Get the hell out of here now, just run out the door and don’t look back.”  

The nurse popped into the waiting room with a smile, introduced herself and led me through to the consulting room.   

A very lovely Gynaecologist introduced herself then freaked me out by telling me she had seen my work.  I said “well you’re about to get to know me a whole lot more”. I got the full, stripped from the waist down, feet in stirrups check up. Then a biopsy.  Then an ultrasound.  

The Gynaecologist told me I had a “mass” that was “concerning”, and that she would need to take a blood sample to give her some more information.  She talked about surgery and referrals, and to be honest, I kind of drifted.  My head was becoming overloaded and all I wanted was to get out of that room after the two hours of examinations and tests.  

I went home with stitches, and no words.  

Three days later, on a Saturday afternoon, the Gynaecologist called me.  It was bad news.  The blood test indicated that the “mass” was most likely malignant.  I’d be referred to an Oncologist as a matter of urgency.  

My knees crumpled and I slid on to the floor as she talked about urgent surgery, chemo therapy, radio therapy.  A plan going forward. 

I asked if there was anything, ANYTHING other than cancer could have caused the test result.  She paused and said “No, I’m sorry”.   She said she was emailing the Oncologist at that very moment and she’d call me back in half an hour. 

I don’t remember the second call.

In between calls or maybe after both, I found myself on the floor.  I could see myself in the bedroom mirror and I heard this awful guttural wailing sound, then realised it was coming from me.  I stuffed a pillow in my mouth and screamed.  Then I decided that it wasn’t happening and if it was happening I didn’t want it, so it wasn’t going to be acknowledged and that was it.  It could fuck off. 

That was the Saturday.  On following the Wednesday the Oncologist called me, and scheduled a CT scan.   The following Monday the scan took place.  In the days before  the scan I cleaned the house and arranged emergency dog walkers in case it was all about to become real.  

A few days after the scan,  I had a video consultation with the Oncologist.  He told me the scan showed nothing “overly concerning”, except the mass, which would still need to be removed, but that the problem was most likely Endometriosis.  A follow up blood test confirmed that he was right.  

I’m not a doctor, so if you don’t know what Endometriosis is, I suggest checking it out here.  

So massive relief, it’s not cancer, but here’s the thing;  I’ve had symptoms of Endometriosis for at least fifteen years.  Endometriosis is a serious condition. I’ve repeatedly brought it up with various doctors.  I was never taken seriously.  I’ve had most of them explain to me how menstruation works and how “cramping” happens, as if I was a fucking pre-pubescent girl sitting at a “how your body works” talk in primary school.  I remember telling a doctor that for at least three days of the month I was in so much pain that I couldn’t walk and she told me “well just don’t walk on those days”. In all that time of not being taken seriously,  more and more damage has been caused to my body to the point where the condition is now “invasive” and I have a cyst the size of a duck egg in my side that causes a lump I can actually see when I shower.  

And I am infertile.  

I’ll never have children.  

Ever.  

After finally being referred to an Endometriosis specialist, I was offered another series of tests to find out how fertile I am.  This is to determine whether or not to prioritise keeping my uterus when they operate to remove the “mass” and the Endometriosis.  The treatment for many women who have either had children or don’t want children, or who are no longer fertile is a hysterectomy, as if your womb is expendable if it’s already been put to good use or no longer in fertile working order.  I don’t want a hysterectomy. 

I have always wanted to be a mother.  

The tests showed that even the possibility of IVF is off the table.  

There’s a particular type of grief that comes with knowing you’ll never be a mother when you’ve always wanted to be one.  It’s lonely.  And silent.  You’ve lost someone that only you have ever known, and no one gets it.  I know women who’ve dealt with infertility and then finally, at the eleventh hour, have become pregnant and had their babies.  I know many women who have never wanted children and are perfectly happy with their choice despite pressure to feel and do otherwise.  

I don’t know anyone like me.  

People think that if you’ve never had children you can’t know that sort of deep, primal mothers’ love.  We do.  Trust me, we do.  We feel it, we just don’t have anywhere to put it.  We have all the same maternal instincts and love and nurturing in us, but we have a huge empty space instead of a child.  We know our children, but we’ve never held them.  We don’t get to care for them, or see them grow up, or hear their voices.  I say we, I mean me.  Saying “we” makes me feel less alone in this.  

I’ve lost three pregnancies.  I know what age all of them would have been by now.  They have names.  They live along side me in a sort of parallel life that’s always just out of reach.  I’ve tried to let them go, but they are still there.  

And it’s not only the pregnancies I’ve lost, it’s the ones I always expected to happen “one day”.  I always thought I’d be a mother at some point.  At some point it would happen, when I least expected it, like some fertility miracle you see on a daytime TV talk show. 

It’s not going to happen.  

I don’t know how to come to terms with that.

I remember one doctor about ten years ago telling me that the reason I wasn’t getting pregnant was that I wasn’t “trying hard enough”, and that I needed to just “get on with it”.  I’ve been told that it was my “negative attitude” that was impacting my fertility.  I was told that I was trying “too hard”, putting too much stress on myself,  “over thinking it”, and a whole other load of women-shaming bullshit.  Not conceiving was down to my “attitude”, while the symptoms of Endometriosis I reported were written off as “anxiety”.  I felt ashamed of what was happening and not happening to my body.  Ashamed of complaining.   Ashamed of asking for help.  Ashamed of repeating myself.  Ashamed that other people had it so much worse and here was I asking for support.  

And you know what? 

I’m fucking furious.  

I’m fucking enraged that for fifteen years I’ve had a health condition that was clearly showing itself and instead of being taken seriously, my symptoms, my concerns, my instincts and my intelligence were minimised and ignored and even ridiculed to the point where so much damage has happened to my body that I’m too late to be a mother and my health has deteriorated. 

I asked for help.  It took a false cancer alarm to be taken seriously.  

I know, I KNOW that I am not alone in this.  I want to hit rewind, and go back to the times when I should have made different choices but didn’t know any better.  I want to go back and fight to be taken seriously.  I know better now, I want to go back and fix it and change it, but I can’t.

After the Endometriosis diagnosis, I hurled myself into doing everything I could to make it better, even just a little bit better.  I had to feel like I had some sort of agency over what was happening.  I made huge changes to my diet and lifestyle, cutting out certain foods and caffeine one at a time.  I wasn’t expecting much change but gradually things started shifting.  I was able to start working again, slowly but it was a start.  I started teaching again which felt like the sun being switched back on.   My health has continued to be a concern though.  I was added to a waiting list for surgery, which I’m still on.  I was referred to different specialists and every couple of months and new issue would raise its head and need to be acknowledged.  At one point I was averaging two hospital appointments a week.  This has meant a whole lot of anxiety which has eroded so much of my confidence and sense of who I thought I was.  I used to believe I was a healthy person.  At times I’ve felt like I was losing myself. 

One of the things that has astounded me though is that my friends, clients, collaborators and students are still here.  There have been times when I’ve been so low I couldn’t see anyone, and still my incredible friends reach out to tell me they’re thinking about me, or to ask if they can meet for a coffee (decaffeinated for me now!).  I’ve had to cancel and postpone most of this year’s work, and still the wonderful collaborators and events organisers I work with are patient and understanding and supportive.  When I have been well enough to teach or make work, you guys are still interested!  The students who sign up for my courses are still showing up full of creativity and curiosity and honesty and it floors me.  I have no words for my gratitude for this.   

Galvanised by so much support, in the Autumn, I tried to pull myself out of the hole was in, decided to start making big plans for the next year, write new courses, make and finish new work, create larger work, be more ambitious. 

Then last month, my hero, one of the closest, most precious people in my world passed away.  That’s a sorrow that I can’t write about. I decided to throw in the towel and cancel all work until the new year.  I need to rest.  I need to grieve.  

So it’s the end of 2021.  I’ve made little work and now you know why.  So to put something out there, here are some of the things have become glaringly obvious to me, some things I’ve picked up through experiencing situations I’d never known before, and some things that are keeping me going and that are maybe, perhaps useful to others. 

In no particular order;

Nothing, I repeat nothing, is more important than health and friendship.  If you’re lucky enough to have either, then take care of them.  Nurture them, listen to them, prioritise them.  When everything else falls apart these are the things you need to keep going.  Health is not guaranteed.  Neither is friendship.  Don’t take either for granted.

Doctors like it when people are slim.  I am slim.  Due to the stress and ill health of this year, at some points I’ve tipped from slim to thin.  I’ve lost almost a stone in weight over this year (that’s 6.5 kilos, or 14 pounds). Almost every single health professional I’ve spoken to this year has commented and commended me on my size. One particular doctor assumed that being slim, I’d be happy to listen to him joke about all the bad things that could have befallen me if I’d been fat.  So first of all, what sort of prejudices are larger people facing? How much shit do people who aren’t slim have to deal with when seeking medical help? And second, as someone who experienced a hell of a lot of health anxiety this year, how appropriate is it to encourage someone to be thin and tell them their health would be more at risk if they got bigger?  No answers here, just angry questions. 

Embrace beauty, warmth, love and joy wherever and whenever you find it, even if it’s only for a moment.  No matter what is happening, find something, anything beautiful to immerse yourself in, even for a few seconds.  It could be the way the light hits a dew drop, or the colour of a rusted lamppost, or the sound of the wind, but find them. These moments of relief are about your mind and soul’s survival.  Thread one to the next. 

Fight for your health.  Trust your body and mind.  You are not lazy or whining or attention seeking or playing the victim.  Pain is not normal, and don’t let anyone tell you that what you feel as pain is really nothing more than an inconvenience. Fight for your health.  Being ill and asking for help doesn’t mean you’re crying “Poor me!”.  Shame is not useful.  Yes, there are people suffering far worse in this world, and it’s awful and unjust and wrong, but do not allow their pain to be used to keep you too ashamed to speak up when you need help.   Gratitude for your blessings, does not mean being silent about your struggles. 

Notice who stands by your side when shit hits.  Not everyone can or will or should. It doesn’t necessarily mean they’re a bad or shallow person; everyone has limits and needs boundaries, but pay attention to how people respond.  When you are on your knees, notice who sits down next to you, waiting to help you get up when you’re ready.  This goes for professional connections as well as personal ones.  

Know what you want and fight for it now.  I wish I’d stood up for myself.  I wish I’d believed myself when I knew what was wrong, and what was right.   

Build your work reputation on authenticity.  Reputation is everything when it comes to work.  Create the best work you can do and put it where people can see it.  Work and communicate from the heart and you will attract genuine connection and resonance from your audience and collaborators.  Resonance lasts through shit.

No matter what 2021 has brought, I wish all of you a better 2022.  Thank you for being here.