What happens when disability isn't part of the plan? From inaccessible medical equipment to dismissive policies, I uncover the systemic challenges of freezing my eggs with cerebral palsy. This episode is about resilience, advocacy, and finding the strength to fight for what’s right.
Let's Make IVF Ableism A Thing Of The Past:
Please reach out to me directly through my email icantstandpodcast@gmail.com or via social media. My handle is @Petahooke https://www.instagram.com/petahooke/
You can share your story anonymously if needed.
Transcript:
Peta [00:00:00] This limited series, Eggs contains discussions of fertility, IVF and ableism. When is the right time to freeze your eggs? I know for many women they have this question rolling around on a loop in their heads. It is a privilege question to be able to even ask ourselves both financially and scientifically. Between the period of 2011 and 2021 in Australia and New Zealand, the right of egg freezing and the demand for these services have been said to have risen by 1,500%. Was I going to be part of that statistic?
The first conversation I ever had about freezing my eggs was with my mum. A small segment she had heard on talkback radio. I got the wheels rolling in her mind. A presenter had mentioned a group of doctors on a golf course. These doctors had decided to support their daughters by helping them with the cost of freezing their eggs. An additional birthday present landing in their bank account on their 30th birthdays. My mum has always been direct. Never wasting a minute of life. If something can be said as clearly and matter of factly as possible, she was the woman to do it. I think you should think about freezing your eggs pos, she said. My motto in life is prior preparation prevents piss poor performance. However, I felt hesitant about freezing my eggs. It was a big step, particularly for someone who doesn't walk to take. If I chose to do this, it was the clearest sign I could give to the world, but also to myself that I back myself. That I believe in myself. In my ability to be a mother. That I believed in a future where it wouldn't just be me. My instincts told me the medical system might not be ready for someone like me. While also balancing the knowledge that after everything. It still might not happen. They might not get enough eggs.
Before I go on, I want to highlight how supportive my parents and my friends have been in helping me decide if this new path I was setting myself on was right. I didn't expect the response that I received. I think after swimming in a soup of life online as a disabled person and listening to almost 100 disabled stories on my own podcast, the I Can't Stand Podcast. I had my walls up even with people that I love. I will never forget the flash of love, excitement and pure life that danced across their eyes. As I told them, I'm thinking about freezing my eggs. I was getting a small preview of the joy and elation of what it would be like to tell the people you love, that you and your partner were pregnant. The more people I told, the more I believed it was the right decision for me. It felt logical, a smart step. If I was privileged enough to be able to do this, why wouldn't I choose to do it? Freezing my eggs didn't guarantee motherhood. It didn't guarantee me using them or if I would have enough to fall pregnant. But I had to try. I had to give myself the option. My memory is often based on what I was wearing and what other people were wearing on that day. Not a skill that is at all helpful. But I've always been like this.
My very first memory is me being pushed into my very first operation at the age of three. My pink nightie with the frill at the bottom matched perfectly with my dollies nightie bought specially for the occasion. I remember the surgeon saying that my dolly and I looked nice and she could stay with me while I was asleep. Now. In October 2023, I found myself within IVF specialists appointment and I thought a lot about what I was going to wear. I deliberately chose to wear my white body anglaise dress a full face of makeup and bright pink lipstick. I wanted to illustrate I was in control of my life that I was switched on knowing exactly what I was doing. Expecting to be the very first woman this specialist had ever seen. Cerebral palsy. Look, everyone. I didn't spill my coffee down, my dress on the way here. I have it together. Please let me freeze my eggs. I was trying to sway opinion through a bit of manipulative marketing. I went to the appointment alone. This was a strategic choice to. I did not want anybody to think that I expected anyone else to share the primary responsibility of a child. As I arrived to the medical suites, I felt nervous. My anxiety was making me feel every heartbeat in my chest. The suite was small, cluttered with furniture. The medical receptionist answering the phone at a desk that was so high she didn't notice me. Chairs lined the walls without a spare space, resulting in me having to awkwardly place my wheelchair in front of a chair. The chair sat empty. Touches a pink felt like the phrase that had been uttered by the interior designer. I imagined it was a way to try and make the environment feel less foreign to female patients. As if the colour pink was going to soften the news women would face about their fertility in these rooms.
My name was called, and I manoeuvred into his room. I felt relief. Relief because I was finally taking control. Doing the brave thing. The specialist started talking and I instantly felt safe. He was warm, intelligent and friendly. This was a welcomed but unexpected outcome. I had expected to have to explain myself by disability and proved that I deserve to be there. But I didn't need to. I relaxed. Maybe the world was catching up and holding us to higher expectations. We talked through how the IVF process worked. I told him about my period, my cycle, and I mentioned that I couldn't transfer myself out of my wheelchair and that I would need assistance, preferably via hoist. In the medical system. It is something called a patient lifter. He nodded and assured me we would figure it out. He then handed me a referral for an internal ultrasound and blood tests that he needed me to do before my next visit. When I endeavoured to find somewhere for the internal ultrasound, I began to realise how far we have to go to achieve an accessible system. I rang and emailed several locations trying to find a place that I had a hoist that could get me on to the bed to enable the procedure to be done.
I'm sorry. We can't help you. I'm sorry. We can't help you. I'm sorry. We can't help you. I heard that sentence so many times. I ended up going to a hospital for the internal ultrasound. After all my hard work success, a portable hoist was waiting for me with a nurse to help I transfer, and five minutes later the sonographer pulled the screen towards me and showed me my ovaries. Like all good medical professionals, she didn't say much about how many follicles I had. She did mention if I were to get pregnant in the future, I would need to go somewhere else that has a hoist for my skins and so were not able to do those sort of ultrasounds. A problem for another day. I thought to myself. After emptying my bladder into a bedpan. Truly humbling experience. The procedure was complete. And I was to wait for the results. On a bright November afternoon, I received a call from my GP. It seems to show you have a good amount of follicles, she said. Then there was a long pause. They have found a growth.
You need to get it removed. We can't tell without a biopsy. But it might be cancer. I can't cope with cancer was my first thought. I'm not strong enough. It would break me. As soon as the call was finished, I willed myself quickly to my laundry. It has thicker walls, meaning my neighbours would be less likely to hear me sob. I needed a minute. I texted a few people in my life to let them know. Cancelled plans and sat in my house. I did start to feel thankful for my nonexistent baby for helping me find this growth. Knowing it would have remained hidden if I had not made this choice to freeze my eggs. I was not wearing a white dress on my next visit to the specialist. I can't remember what I wore. My friendly, intelligent, warm natured specialist evaporated some fears that Monday peppering me with statistics of how common this can be. How unlikely it is that it was anything nasty. My egg freezing will have to be put on pause, though. Better to be safe than sorry. While I was awaiting my day of surgery to get this growth removed, I thought I should still push forward and get those original blood tests done. I'm all sorry. Impossible to get blood out of. This is not related to my cerebral palsy. It's just dumb luck. My genetics. In the past, nurses had resorted to pricking and squeezing the tips of my fingers to get blood out of me. But the tests that I needed this time was not just a vial. With my referral in hand. After fasting, I went to my local blood collection service. My friendly woman greeted me and assured me she was an absolute pro at getting blood. I rolled up my sleeve and she tapped at my arm, willing my veins to make themself known. Have you drunk water? She passes me a rubber glove full of hot water and peers at my arm. After some time, she said, I'm sorry, but you're going to have to go to a hospital. There's no way I can get any blood out of you.
The blood still firmly in my veins. I presented at a hospital's pathology department. They could fit in this walking in her wheelchair. Even after using what's called a butterfly needle, my blood refused to come to the party. I'm sorry. You're going to have to present to emergency and request an ultrasound machine. More ultrasound machines. At least this time I didn't need a hoist. As the clock in the emergency department knead. Towards midday, an attractive male doctor called me through. As soon as he placed the ultrasound on my arm, a big vein showed itself to the camera. There you are, you little bugger. Six vials of deep cherry blood filled a tube. The doctor labelled them and then placed them to be collected. For reasons that are still unknown to me now. I still had to get this blood test done two more times. The second time they lost the whole sample. After the effort it takes to get blood drawn to then lose it. And also, I have my DNA just out in the world. Was very upsetting. So if I'm going to meet a client of myself in the future, I have one bit of advice for those who used my blood to make Peta two point I please for her sake, make her an easier bleed. It felt odd not to be arriving at the Royal Children's Hospital as I had done so many times before. Undergoing surgery. For me, it's like riding a bike. I have done it so many times before. Little Peter did this without fear. So I don't being tried to do this. I try not to think of the outcome of the biopsy and instead looking forward to a really good sleep. While I was under anaesthetic. It was so small that it burst before we could take a photo. My specialist told me, standing at the foot of my hospital bed, There should be nothing to worry about. Thankfully, this time there wasn't. It wasn't cancer. My egg freezing journey could now begin again. So I found myself in that pink consultation room very quickly after that day and a little bit excited.
We're finally going to get the ball rolling, I said. There's a bit of a concern about getting a hoist for the procedure. My specialist said. This procedure would occur at the same hospital. I just had my pulp removed. They have a hoist. I knew because I used it that day. Apollo, it turned out, wasn't the only thing to put a pause in my plans. I and my ex were not only going to have to wait. But we in fact, we're going to have to fight for our future. Thank you for listening to Eggs, a limited series from the creator of the I Can't Stand podcast. This series was voiced, written and produced by me, Peter Hook. If you faced similar barriers with IVF or you work in the healthcare system and want to share your story about ableism, I'd love to hear from you. Links in the episode description and all stories can be shared anonymously. Just let me know if that's your preference. Your support truly means so much. Thank you for listening. Take care.
I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation of which I record the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
Comments