Chapter 35: Diary of a Disabled PhD Student
Posts 340-349 - Full Circle of Life (9.4.24-20.4.24)
Context: These posts are found on my Facebook Diary of a Disabled PhD Student
I collated posts from my Facebook Diary of a Disabled PhD Student page into a Word version. A selection of these Facebook posts are in the Word version of my PhD thesis. Here, on this ‘The Diary of a Disabled PhD Student’ part of my Substack website, I collate all my Facebook posts so you can see in chronological order from when I started the Diary on 20.4.2023. Each Chapter is 9 Diary Facebook posts in chronological order. I have given the chapter a theme underneath the heading title above. There is a photo at the end of each post related to the discussion within that post. My Substack also hosts 1) The Disabled Peoples Project and Disabled Actors Project, which show biographies of different people with disabilities on different social media platforms (I am the creator, editor and contributor) and 2) The Creative Writing Hub. I reference these aspects within my Diary along with my Medium articles and Talks during my PhD. My full research website where these components can be found is www.linktr.ee/disabledphdstudent. My Diary posts reflect on different aspects of my research website together with reflecting on daily life from having disabilities and chronic illness, my experiences during a unique and unusual period of my life doing a PhD, along with other snippets of my life not related to either! I also discuss various digital media creators, journalism and TV sources within posts along with interviews done during my PhD period.
N.B I say ‘unique and unusual’ because only 2% of the UK population have a PhD*, with little research surrounding the intersectionality of those who have completed doctorates. However, indicators* suggest few disabled, working-class people complete a PhD out of them 2%. When I graduate with my PhD will mark my 20th anniversary of being a mature student at the same university. As a working-class middle-aged woman with many disabilities and chronic health conditions from a family of intergenerational struggles, I explored during my Diary of a Disabled PhD Student how the heck I got to this point. With the hope to break down the ‘Glass-Ceiling’ for others who face struggles wanting to pursue their dreams, whatever those dreams may be.
*current figures only record up to age 64!
Chapter 35 below contains Posts 340-349 (9.4.24- 20.4.24) from my Diary of a Disabled PhD Student.
Chapter 35 Posts 340-349:
Post 340- Spiritual Alchemy - 9.4.24
I've been reading about spiritual alchemy recently. Alchemy was an ancient philosophical term that describes the quest to change metals and philosophers' stones. But spiritual alchemy surrounds more:
"The practice of inner transformation. We all have the potential to transform by aligning our thoughts, feelings, and actions with our highest and most authentic selves. The ancient art of alchemy was the search for spirit in matter." https://spiritualgangster.com/.../the-art-of-spiritual....
To get there:
"Spiritual alchemy is concerned with freeing your spiritual self, which is trapped within you by unrefined parts of yourself, such as your fears, personal beliefs, or self-loathing."
https://www.udemy.com/.../becoming-a-spiritual-alchemist/...
Alchemy came by accident, and I am seriously calling myself the Accidental Academic now! By Rory Sutherland, marketing guru, believe it or not! He has this book: Alchemy: The Magic of Original Thinking in a World of Mind-Numbing Conformity https://amzn.eu/d/8nvheSN. Giving examples of things that shouldn't work but do, and the more we try and keep within the box, prevents innovation and success. Then I accident across this book: THE ALCHEMIST: The international bestseller https://amzn.eu/d/fR7fTlq by Paulo Coelho, Paulo Coelho which centres around a shepherd in Andalucia who went on a long physical journey to find success only to find it literally under a tree in his back garden. Representing alchemy is within yourself and the most obvious.
Carl Jung, an early psychologist, believed in spiritual alchemy. A book on this subject can be found here: https://press.princeton.edu/.../978069101.../jung-on-alchemy#. Jung's blog is at https://www.carl-jung.net/alchemy.html. Jung focused on alchemy, which deals with coincidences, irony, and life synchronisation.
After several coincidences and hearing many stories yesterday about strange ironies, how almost everything
We refrain from the illogical within research. But as Rory Sutherland says, it's the IRRATIONAL that brings success and can bring great new contributions to life. Even Carl Jung, who is respected within academia, said so. Still, despite having studied psychodynamic counselling for two years, I am trying to remember this part of his work being taught.
It was a solar eclipse yesterday, 8.4.2024, so this post is timely!
The great Rory Sutherland book is in the photo. He also makes great YouTube videos. I first discovered his videos on TikTok. Several YouTube clips give little snippets of his anecdotes.
Medium Article where I reflect on spiritual alchemy:
https://medium.com/.../reflections-spiritual-alchemy...
Post 341- Dr Sabrina Smith - 9.4.2025
Last year, I was interviewed on Chris Deacy's great podcast called Nostalgia. This year, one of my mentors, Dr Sabrina Smith, was interviewed on the same podcast (link below)!
I have been extremely lucky to call Dr Sabrina Smith a friend, teacher, and mentor. She taught me in the Creative Writing class at an Adult Education College, where I made many long-term friends. I have called it the best class and teacher I have experienced, and I have experienced a fair few in my 20-year university history and previous schooling, too!
Dr Sabrina Smith also teaches Creative Writing at a university. Her PhD thesis was a fiction novel about 1990s British music in terms of gender, race, and class, with a critical reflection.
https://audioboom.com/posts/8485152-sabrina-mei-li-smith...
Post 342- The ache - 10.4.2024
Elisabeth Emins talks about 'Disability Admin.' What she means by that is the added paperwork a disabled person must navigate and complete in various aspects of life, which not only takes added time but also has a detrimental effect ironically on health. Her article is here:
https://scholarship.law.columbia.edu/faculty.../2938/
I feel this 'disability admin' pressure today. It takes a lot of work to do that pressure on top of finishing writing a thesis. I'm aching all I have today. Also, ironically, my eyes started streaming yesterday. I think hay fever or something. But as my article 'My Smart Sleep' last year showed, it's when things happen like that that it has a knock-on effect on sleep, affecting existing chronic illnesses more. That Article can be found here:
https://www.researchgate.net/.../371234484_My_Smart-Sleep...
Ironically, as my eyes were streaming yesterday, I received a call from the opticians stating that my appointment was overdue. Also, during my project, I've talked about the literal.
Journey to places when disabled and how difficult they can be. For example, I can't predict how I will feel on the appointment day, have to spend considerable hours preparing to go out to get there, who will support me, etc.
Then there's what Stephanie Hannom Swain talks about: 'additional labour of being a PhD student'- again, she talks about added bureaucracy and things that should be available but are hard to get to help continue studies. (Stephanie's Article: https://shura.shu.ac.uk/.../Hannam-Swain%20Additional...)
So, all that combined and more, no wonder a lot of disabled PhD students don't complete their PhD. Mind you, the statistics are very sketchy- the Office of National Statistics only includes degree-level students who have disabilities. But not PhD level or the amount who drop out. However, research previously posted by disabled students in the U.K. presents a dismal picture. When I presented such information, one academic said, 'Well, the university is a large organisation, so that it will be bureaucratic. It's not just a disability thing'……. Well, I guess you can justify anything in life. In the meantime. I'm playing here, aching all over…. I got to do 'disability admin,' eyes streaming and got to re-edit one of my chapters whilst feeling s*it- disability admin will take me about 2 hours, and I have to do an errand, which before disability would take me 30 minutes. Now it takes 5 hours plus out of my day, followed by tiredness…… then write PhD.
Anyway, the coffee is helping.
Post 343- My Smart Sleep - 10.4.2024
This research article, 'My Smart Sleep,' which I published last year, seems more relevant than ever, given the cost-of-living crisis, dental care, and the knock-on effects of such matters on chronic illness. I'll re-visit doing a shorter Part Two article this year (I present a 'sleep spider sphere' on p.28):
Post 344- Emma Louise Duffy - 11.4.2024
Emma raised a lot of awareness about eating disorders through the years and helped many others with her powerful experiences. Even though she had ill health, it was a shock that she died as she was so strong of a character. It’s her funeral today.
It would be great to see a book with her collative Facebook posts through the years.
Funeral expenses are unexpected, especially for someone so young. There is a GoFund page to help with the funeral costs below.
https://m.facebook.com/story.php?story_fbid=10160350279723472&id=587688471
Post 345- The woman from the past - 11.4.24
I couldn't find parking at the hospital. Ironically, Good Morning Britain talked about parking at hospitals this morning. They raised a survey asking watchers if they felt people should or shouldn't pay:
Normally, we circle a few times and find a spot as, by principle, I refuse to pay for parking. But it's getting harder and harder to find a space. I even paid for parking in a big queue with the car park saying full. We finally found a space in the paid car park, and I had to grind my teeth at doing that.
I went to Gastroenterology today, which I'll put on another post….
Anyway, going back to Dad's car, Where's the pay machine?'' We have a five-minute shouting debate.
''Over there, " Dad sprints to the machine despite no appointment time. Mind you, every second counts when paying car park fees.
Then, spending ten minutes with a queue of people tutting while we figure it out, you have to put the reg plate in, etc. Luckily, there is no app-only payment yet—options are cash and card. There was a big queue as everyone faced similar perplexing how to figure it out……
Woman sitting on a wall next to the pay machine:
"Can you spare any change for a hostel? " She said it enough times that I told her to get a tape recorder.
A guy once said, ''Can you spare any chance to get home?'' lingering around the hospital for about a year. So, since then, I have refrained from giving money to people who hang around the hospital, especially near car park paying machines, as many vulnerable people go to the hospital and many people target them…….
I looked at her. ''I know her from somewhere,'' I kept thinking as I waited in line to pay for parking, which felt like ages as the couple in front were as bad as us with technology. ''Maybe it's from my past social work job, I think,'' I said to myself.
My dad gave her some water and a bounty bar. It was like she had won the lottery—a £ 5.50 parking fee. I figured out what I would sacrifice to pay for the parking fee. I put a £10 note in the machine and a £4.50 change. I turned around.
I Handed £3 to the woman on the bench. Seeing the state of her hands, I gave her the full £4.50 change.
Who knows whether she will spend money on a hostel? If not, she will spend it on something she needs to get through the s**t she is going through.
"People don't think twice about giving money to crooked companies. Yet someone like her who needs some help, no, " I say to Dad in the car on the way back as we pass her still sitting on that wall. Her bum must be rock-hard.
I got home, had a cuppa in my comfort, and couldn't get her to sit on that cold, hard wall with their hands out of my head……
"I know where I know her from, "I shouted, spitting out my chai tea. She was a patient once on a Gastroenterology ward I was on in hospital around 2016. Crikey, how can times change for people? She was dressed smartly back then and had a house relationship. Now, she is sitting on a wall at the same hospital asking people for change for a hostel that night with hands ironically looking like they need medical attention. It showed me where or how you can end up quickly in life.
Post 346- The real-time of a 15-minute hospital appointment- 11.4.2024
How does a 15-minute hospital appointment take 30 hours? Answer: chronic illness. Let me dissect this:
10.4.24: I knew that with the hospital appointment on the 11th, I would need to be careful with what I eat; otherwise, I would not be able to leave the house with incontinence. I also printed some things out for the appointment.
10th/11th: I didn't sleep that well. Appointment was on the 11th.
11th: I woke at 6 am, approximately 3.5 hours before leaving the house. This gave me enough time to empty my bowels and move around properly; otherwise, I needed the right sequence to leave the house. I must ensure I don't have coffee less than an hour before leaving the house, but I need it to give me energy!
11th: luckily, Dad is helping to take me. He puts the wheelchair in the boot and waits outside for me to finish getting ready.
11th: We leave early to give enough time to find parking at the hospital. So, we go before 9.30 for an appointment at 11.20 am, and the hospital is about 15 15-minute drive from home.
11th: park up (see previous post). Get to the appointment early. On the way to the appointment, go to the toilet in another part of the hospital as the toilets are better there. Ironically, toilets are crap at gasterentology, yet you would have thought to be the other way around considering the nature of the patient's condition. I can't drink anything from the cafe even though I'm dying for a latte, as I'm on ModuLife (see previous posts).
11th: A lovely consultant said I could have a scan and blood tests in preparation for a new immune suppressant medication. So, I went to another part of the hospital and had them. It went smoothly, and I didn't have to wait—apart from taking a while to get my blood!
11th: got to the car on another side of the hospital at approx 1.30 pm
11th: I was going to ''pop'' (even though there was no such word as pop quickly with chronic illness) in the shop on the way back, but I was too tired, so I didn't. It was 1.30 pm by this time, and I arrived home with a wheelchair back in the house at about 2 pm.
11th: I always shower when I get in to ensure that the germs are not on me as much as possible, especially after visiting the hospital (I am immune-suppressed). You know, the things people did during lockdown are always a consideration when I am immune suppressed. So that took much time due to chronic illness!
11th: I switched on my laptop and did a few hours of PhD. I felt bad because I had not done more. Going out and taking a shower just knackered me.
11th: Evening- so exhausted from today. Sat watching the soaps comatose.
I hope I will sleep tonight. I am aching all over. So, a 15-minute appointment took approximately 30 hours, not just my time but other people's.
Post 347- Jeremy Paxman raising awareness of Parkinson's- 12.4.24
"One in 37 people in the U.K. will be diagnosed with Parkinson's in their lifetime, according to the charity Parkinson's U.K. "
The Article says a response from the government that millions will be dedicated to research over the next five years. Unfortunately, this ends up being only medical-based, i.e. looking for cures. A holistic approach to include lived experience/social aspects of the disability will look at the specific things that Paxmans report highlights, e.g., a Parkinson's passport to get access to certain benefits, housing, family needs, etc.
It is striking to me how many people will be diagnosed in the U.K. with Parkinson's. Also, there is the hidden aspect.
It's great that Paxman is using his position to raise awareness. Others who I have completed biographies on the DPP and Parkinson's have done similar. These include:
Parkinson's
6
Michael J Fox
Actor Hollywood, Parkinson's Research awareness, autobiographies
21.3.2023
Repeated on DAP (1)
Parkinson's
59
Robin Williams (1951-2014)
Actor
Repeated on DAP (26)
Parkinson's, dementia? ADHD? Dyslexia, Bi-Polar
63
Paul Sinha
Quizzer, Comedian, TV
11.7.2023
Parkinson's
76
Billy Connolly
Entertainer-Comedian, writer, artist
22.7.2023
Repeated on DAP (34)
Parkinson's, previous Prostate Cancer
79
Ozzy Osbourne
Singer
23.7.2023
Parkinson's
97
Muhammad Ali (1942-2016)
Boxer, Philanthropy, Social Activism
15.9.2023
Parkinson's
Post 348- another day, another day closer instead of the dollar! 18.4.24
Trolly used to write PhD on a keyboard, laptop, and mouse, surrounded by a diary and notebook. I am in a bed with the T.V. on mute in the background while on my PhD. Curtains shut.
Post 349- Warwick Davis- 20.4.24
So, the sad news came a couple of days ago about Warwick Davis's wife, who died at only 53. I did a biography on Warwick Davis for The Disabled People's Project and my sister's project, The Disabled Actors Project. The TikTok version can be found at the bottom of this post if you want to know more about him and his work. The biography is also available on other versions of the site.
Also, here's a news article about Warwick's wife: https://www.mirror.co.uk/.../warwick-davis-samantha-davis...
Biography on Warwick Davis for The Disabled Peoples Project, which I am the creator, editor and contributor for:
https://vm.tiktok.com/ZGeHqHCnp/
