0120: A New Chapter
"A New Chapter," Juan-Luis Garrido
If I think of my life as a memoir of what I will one day accomplish, I know I’m at the start of a new chapter. I just graduated from my undergrad last year, and have started my career working in university student services. The last 23 years of my life have shaped my worldview, and have built me to be the person I am today. Those memories, experiences, and events will inform the rest of my life.
One of those key events was when I was diagnosed with multiple sclerosis when I was 19. When I was first diagnosed, I didn’t know what multiple sclerosis was, and neither did my family. We all assumed the worst. The diagnosis brought so much fear, uncertainty, and concern to our lives.
Now, I have been quite lucky so far – thanks to my doctors, treatments, and some lifestyle changes, I have remained healthy. It’s been 4 years since my last relapse, where I spent two weeks, including Christmas, feeling nauseous, dizzy and unable to feel my limbs.
As multiple sclerosis is an episodic disability, this able-bodiedness is temporary, as there is no cure. As the time since my last relapse gets longer, the time until my next one gets shorter. It’s inevitable, and knowing the gamut of symptoms I could experience at anytime leaves a black cloud over the clear blue skies of my ambitions and future.
Every night before a big event, I think about what would happen if I wake up the next day, not being focus my eyes or see. When I think about when I need to find a new job, I worry about whether or not my benefits will cover my medication. And while I love my apartment, I hope that I won’t lose mobility while I live here, because it doesn’t have an elevator.
I think about my plans for grad school, for advancing my career, for ways that I want to volunteer, and while I feel inspired, and motivated to affect positive social change, not knowing what my health or (dis)ability will be like even tomorrow, much less in a few years is terrifying.
What does provide solace and comfort however, is something that I advocate for, champion, and always push the importance of:
I know that I am surrounded by family, friends, and loved ones that have supported me every step of the way. Taking care of me during my relapses, coming with me to doctor’s appointments and MRIs, and listening to me as I process these feelings has been crucial to me maintaining my hope and ambition.
Being an ambassador for the Multiple Sclerosis Society of Canada has introduced me to amazing people, given me space to talk about and work through my diagnosis, and connect with fundraisers, advocates, and activists around Canada.
And being part of communities that care about the development of students, the role of power and privilege in our society, and that fight to advance our society to be more fair, and more has empowered me to do the same.
My communities have taught me to be self-aware, and the importance of filling my cup so I can fill those of others. I’ve started meditating to become more mindful and intentional with my actions, my emotions, and the awareness of my body and my surroundings. I have empowered myself through lessons from others.
Through these communities, I have found strength, hope, and wisdom. So while I do not know exactly where my MS will take me, I know that I will have not only the support of my communities, but also I will always take with me the lessons I have learned from them.
My story is not about MS. It is not about the fear or worry that it brings with it. It is about how I have been lifted out of constant fear into a mindset of hope, ambition, and action by my loved ones. And that, for me, is the greatest story.
About the art:
In talking with Juan about this piece, he gave me a simple concept—he wanted the splatters on this piece to mirror the way MS interacts with nerves in the body. So I made sure the splatters on this piece had plenty of legs, which meant slightly more water than I usually use on a splatter piece.
The quote is a modified version of Juan's words toward the end of the story. I wanted to capture this quote because I feel it matches the essence of Juan's nature and his determination of facing MS head-on and with no reservations.
The colors turned out quite rustic, which is what I was hoping to achieve—sometimes, I never know how the colors will end up. But this piece is definitely one of my favorites in terms of how the colors pop off the canvas!
I wanna thank Juan for sharing this powerful and empowering story with us for our first chronic illness month story! Getting us started on the right foot.