I used to spend my days surrounded by academic Drs. Established Drs, newly appointed Drs and fellow Drs in the making. I haven’t been around these Drs since the beginning of the year. I spend most of my days at home now. Now I mix with other Doctors; rheumatologists, cardiologists, radiologists, surgeons, general practitioners and various other medical professionals.
I have been ill for a couple of years now, but it has taken recently to be diagnosed with a very rare muscle and skin wasting disease called dermatomyositis. It has meant extreme pain in my muscles and joints, muscle weakness, hair loss and weight loss, problems with my speech and heart and lung involvement. It is so rare that there is currently no specialist in Scotland. There is no cure, but it can be treated with quite a heavy load of drugs – all that come with their own nasty side effects. Steroid treatment means the inevitable Moon face that occurs, named because of the weight gain that gathers on the face. During the PhD I have dealt with a breast cancer scare, an ovarian cancer scare and currently a cervical cancer scare, which is even more so worrying because it is common for cancer to be the trigger of dermatomyositis. But, I am all about positivity and I am coping well. I would say it’s the many medical investigations and waiting time for results that has been most distracting in relation to the task of writing up.
One thing is for sure, my life as I knew it is forever changed. But I am here to tell you, that that’s okay!
I have swapped writers block for muscle block. Where I once thought how do I even begin to put this thesis together on paper, I now think how do I make these muscles move so that I can even sit up in bed – the connection between thought and action just gets lost along the way. I also STILL think how do I even begin to put this thesis together?!
Where I once received notifications on Facebook from academic groups that I belong to I now also receive notifications from the Myositis groups I am a part of and I find both are equally as important, supportive and informative, and provide me with a sense of belonging and ‘being in the same boat’.
I have always been known for working on various projects at the one time. I thrived on it. As I became increasingly unwell, I started to let go of my commitments. This was really difficult for me. Really difficult! I made the decision to tell the Accessibility and Inclusion department that I work for that I wasn’t well enough to continue supporting the students that I had been, which was tough because I had worked hard to build a trusting relationship with each and every one of them. But, once the decision was made, I started to feel less pressure. Informing module coordinators that in fact I would not be able to deliver lectures or teach classes (I absolutely love teaching) that I had agreed to was tough. I felt like I was letting people down, but again, the pressure lessened. It was hard to finally acknowledge that I was not in the best place to continue to support my dissertation students at the level they needed. But letting this go also relieved more pressure. One of the hardest things was being unable to deliver on a research project that I have been involved in for some time, again experiencing feelings of letting people down or being viewed as incompetent. When I had let go of all of my commitments, my body then crashed if you like and I spent 2 months in bed sleeping and unable to eat until I was hospitalised. I now thankfully am at peace with letting go of my commitments and knowing that it was exactly what I had to do to take care of myself. I 100% know my own worth.
I have always been fiercely independent, but I now see the beauty and value in small gestures. My mums’ life partner (Frank) each week picks me up so that we can hang out with my mum. He parks the car as close to the main entrance to the supermarket so that I don’t have to walk far and he packs my shopping for me. My mum and Frank also take me to my many hospital appointments. This alone removes so much stress from my life and it makes my heart happy and grateful to have such wonderful supportive people around me. More so because Frank is also dealing with cancer and my mum has recently been diagnosed with vascular dementia – we joke about all of our illnesses each week and it is so refreshing to be able to laugh about it. I have been equally blessed to receive some lovely messages of support from fellow PhDers, which is important to me so that I am not too removed from the Faculty given I spend most days at home. I appreciate when my children do little things like open stuff because my hands don’t work or go do errands for me or when they cook a meal or push me in my wheelchair to save my energy. And I appreciate every little care package and every bag of shopping from a special person in my life.
I now still celebrate productive days. They just look different. Where they once might have meant marking a pile of essays, teaching, working on a chapter etc. now they mean baking, cooking a meal, doing housework, dealing with emails and calls, and attending hospital appointments. I gain just as much pleasure and satisfaction checking these things off my list. I am not in a position to support myself financially AND do the PhD so I have learned to live on less and appreciate all that I have. This has meant going through the sometimes-frustrating process of applying for benefits. I have worked so hard to be able to be in a position to support myself and my family financially so that was something that I really struggled with as I let go of paid opportunities. But, I am grateful that what this comes with is the privilege of being able to get up when I am rested and go lay down when my body is struggling instead of exhausting myself with super early starts and the commute to and from campus before I even begin to work.
I am a great believer in everything happens for a reason and what doesn’t kill you makes you stronger and I have already learned so much about myself, my priorities and values through this disease, and I have no doubt that I will continue to learn. A pleasant surprise from dealing with this illness is that I no longer have a gnawing stress of desperately having to find work in academia once I graduate with my doctorate. I have zoned out of that and instead tuned in to my new reality. I now place more focus and importance on my energy levels, my muscle weakness, my breathing, staying calm, adjusting to medication and taking care of my mental health and well-being and enjoying the people around me.
I have some apprehension about tying my old reality and my new one together as I prepare to start work on my thesis again because one, I have to get myself back into that flow after being away from it for so long and two, I know that once I do get back into the swing of things my juices will flow again and my passion will be reignited. My passion for my study, for research, sociology, teaching and for writing will be reawakened but I have to make sure that it doesn’t overtake and that I make sure to listen carefully to what my body needs too.
Beyond the PhD my health is my main priority, but I am absolutely still determined to complete my PhD, not doing so would be a particularly difficult pill to swallow. I am at peace with how my academic future might look different or have to change. This I think is because I have worked so hard during my PhD to build my CV and in doing so have experienced all of the things that I thought I would need the PhD to do. I have taught on various modules, lectured, supervised students, marked essays, supported students, organised conferences, published etc. so no one can take that away from me. I did all of that and I am proud of these achievements.
So, I may walk across that stage graduating with different goals in mind and looking a bit different to how I might have thought I would, perhaps with moon face, with my walking stick or being wheeled across in a chair, and I’m good with all of those options. Because it doesn’t matter how I get across that stage, what’s important is that I achieve that goal that I set out to do, because it is one that means a lot to me. Then I can explore what my future holds, but not until then. One goal at a time.
The PhD can be all-consuming, until it’s not. The world doesn’t end. It just changes.