Every day I wake up wishing I was dead. I suffer from multiple disabilities that make life exceedingly difficult, exhausting and painful. Sleep (when I’m able to get it), is my one reprieve. I thank the deities/ancestors everyday that I am granted a reprieve, as 2 years ago when my health was at worst, I fell asleep to nightmares of being mauled by wolves. I interpreted this as a dream state manifestation of the chronic pain and seizures I experience while asleep. Suffice to say, waking up is often the worst part of my day.
Once I have sufficiently steeled myself for the battle that is being awake, I do my stretches and start my day. I’m currently living in my mother’s spacious home in Mutundwe (a suburb on the outskirts of Uganda’s capital city of Kampala) and working part-time as a freelance writing consultant in addition to being a personal assistant/business consultant for my mother. Although, if we’re being honest, every responsible child of the Global South, particularly those with single parents like myself, are their parent’s personal assistants/business consultants.
What I spend my days doing varies largely based on my health. My health is incredibly volatile which unfortunately means I cannot hold down a stable full-time job. This would not be unfortunate if we did not live in an ableist world where your worth is intertwined with your productivity, but alas, if wishes were horses we would all ride. On my difficult days, I can’t do much. My legs become paralyzed, I have multiple seizures, my pain levels skyrocket and I spend the days in bed, not being able to think straight, wishing for death. These difficult days can occur anywhere from 2-4 days a week and have increased in frequency and intensity over the past year. Why? Neither I nor the doctors have any idea, but if there’s one thing life has taught me, it’s that some things can never be overcome, they can simply be managed.
Despite my perfectionistic, workaholic tendencies and the living hell that having a body on fire from head to toe 24/7 entails, my time in Kampala has thus far been quite refreshing. I’ve been on tour in support of my debut novel ‘Dear Philomena,’ for the past year which has been incredibly exciting, fulfilling and a real dream come true. Nonetheless, it has also been exhausting, especially due to the fact that I’m an independent artist, which is lovely, but a lot of work. I’m my own booking agent, publicist, sales manager, accountant etc. I don’t regret this, because as a wise man once told me: if it ain’t free, it ain’t for me. More importantly, it’s been an amazing learning experience of the business side of the industry. Being an independent artist, also allows me to break even instead of enduring a deficit, and to break down doors to gatekeepers.
While on tour, I found it very difficult to write. Between catching up with friends and family I met on tour, publicizing, planning and performing at shows, booking new shows and travel/accommodation arrangements on the road and making new friends. My time in Kampala however has been incredibly conducive to my writing process and I’m making unhurried but definite progress on my second book and planning ways to use everything I’ve learnt from my first book to it’s benefit.
The majority of my time in a day is not spent writing new material but instead doing administrative work. Submitting writing to journals, applying for residencies/travel grants, booking shows for the continuation of my tour, requesting press and reviews, pitching and formatting my book for different distributors and collaborating/supporting different art events in Kampala. The Kampala artistic community has been very kind to me. I returned to Kampala for the first time in 4 years in 2017, and was welcomed with open arms, so I try my best to pay it forward. My touring also never ends as, I’ve done 2 shows each month since returning to Kampala, including my first trip to my ancestral homeland of Rwanda!
Perpetual guilt over not being able to do as much as I used to/want to mires my existence. I battle depression and chronic illness on the daily. In the midst of this, I still love myself, I love others and I’m loved by others. I’m also fulfilling the dreams of a 5 year old Mugabi who proudly proclaimed to everyone he met: “I know want I want to be when I grow up! An author!”
An advocate for the intersections of art, gender, sexuality, chronic illness, disability, accessibility, social justice, environmental justice and literacy, Mugabi leads workshops in effective writing, poetry, performance, vulnerability, mental and chronic illness for youth and adults.