Marissa Quenqua is a 31-year-old writer in New York. Marissa has spent much of her life coping with a series of difficult conditions and disabilities, and has used a health and fitness practice to manage and alleviate their symptoms. Her experience has much to teach all of us about persistence, determination, and the healing effects of a healthy and active life.
WB: Give me a brief overview of the main things you participate in that keep you active and healthy. How did you happen upon these things? How long have you done them for?
MQ: I have mild cerebral palsy, which occurs as a result of an insult or injury to the brain before, during, or slightly after birth. I was born two months premature. I am extremely fortunate because my involvement basically just means I have really tight hips and hamstrings and some balance issues. I’ve had multiple corrective orthopedic surgeries in childhood that improved my gait considerably. I had physical therapy as a child every week, sometimes multiple times a week. Going to a college with a lot of hills on the campus and moving to NYC in 2006 improved my strength and stamina considerably. In 2009, I was diagnosed with chronic daily migraines. I was 24. After going to numerous doctors and having test after test come back negative, I threw myself into a yoga practice at a studio. I’d never done it before. I was terrified at first, I told all the teachers about my disability, and shortly after fell completely in love with it. I was going 6–7 times a week. I was in the best shape of my life and I discovered/worked on not only my physical weaknesses but strengths I didn’t know I had (turns out, I am an awesome back bender).
WB: How do these activities relate to your personal identity? What do they say about who you are, fundamentally, as a person?
MQ: I monitor my health more closely now than I ever have before. This year, for the pain management of my migraines, at the suggestion of a healthcare professional, I have gone gluten free, dairy free, and I avoid processed food and processed sugar. I’m in the process of discovering how I can become my best self physically. I haven’t totally given up on a cure for my daily pain, but I am not searching for a cure like I did in my twenties. At thirty, I accept that this is something I still deal with every day of my life. I have to do the best with what I have and manage it. Since being diagnosed with chronic pain, if I don’t do these things (monitor my diet on a daily basis, take computer breaks when I need them, eat every few hours and stay hydrated, get 8 hours of sleep a night and go to yoga) I feel terrible. I pay a physical price every moment I don’t take care of myself.
WB: How is this part of your personality?
MQ: I have more limitations on how I spend my time. For people who don’t know me well, it might seem like I cancel on plans a lot or I am quiet or seem low energy at times. If I don’t do the things to make me my best self physically, and even sometimes when I do, my energy level is quick to drop. If I work on a computer all day, chances are I can’t go out that night. I’m dealing with my condition (not really the CP, but the chronic stuff) all the time. I am more cautious, I’ve always been more cautious.
WB: How do these activities make you feel? What are the benefits you derive from them, from both a physical and emotional standpoint?
MQ: Yoga helps everything. My physical well being, my emotional well being, my mood. During the class, especially if I haven’t gone in a long time, my muscles are more spastic and doing it hurts like hell. I go from wanting to kill the teacher/myself to feeling happier and more relaxed and looser than I ever imagined. It’s always worth it. And if I go consistently, then I can really start to open up and make progress. I have less instance of acute migraine, more energy. My balance improves. One of my symptoms of migraine is dizziness, and yoga helps this immensely.
WB: How do you feel about your current level of health and fitness — not just physically, but mentally? Is this different from how you’ve felt in the past? If so, what’s changed for you, and how were you able to make those changes?
MQ: I feel good. I am being forced by my own body to be as healthy as possible every day. I can’t decide to not take care of myself one day without paying a physical price for it that same day, or the next. From 2009–2012, I was also on unemployment/disability/underemployed after losing my publishing job due to constant chronic migraines and dizziness. I was able to devote my entire life to managing my symptoms. I wasn’t stuck in front of a computer every day, I was going to yoga 7 days a week. I’ve been working 9–5 again since 2013, so that’s harder. There isn’t as much time and I am triggered by computer work and florescent lights. I can’t take the breaks I need to every couple of hours. I have just recently, however, transitioned out of a 9 to 5 job and into full time freelance writing. I think this is a much better schedule for someone with daily chronic pain, but I still need to monitor myself to a great level every day and balance that with working.
WB: Are there mindsets you’ve adopted, rituals you complete, etc to keep yourself in a positive mind/body space? What are they? How did you develop them?
MQ: I have an extremely strong sense of self and calm, an inner strength that I developed at a very young age. My complex medical history meant that I was forced to consider the concept of my own mortality before my first major surgery at six years old. I was always an other, whether it be because of my disability or because I was more mature than other kids my age. To heal from hip surgery, I was in a cast from my waist to my ankles for six weeks. I had to then attend first and second grade in a wheelchair for six weeks, then a walker, then crutches, then a cane. When I became sick at age 24, experiencing daily pressure and pain in my head with dizziness, many doctors had no idea what was wrong with me. All my tests came back negative, I was prescribed a slew of medications to try, to no avail. Analgesics both over the counter and prescription, anti-seizure, muscle relaxers, antidepressants. It was only when I was diagnosed by a headache neurologist at St. Luke’s Roosevelt Hospital that I began to find answers. I take medication every night to manage my condition. It’s a specific combination of meds and milligrams as well as natural supplements that took years to get right with the help of my neurologist. We found that increasing the meds too much has unwanted side effects for me (lethargy and ironically, dizziness). I still have a low level of pressure in my head every day that gets triggered by external factors and need to be managed daily. I’ve come face to face with just how strong I am as a person since 2009.
WB: Is there a particular moment, or instance where you recognized this? How do you remind yourself of this? Do you need to remind yourself of this?
I realized just how strong I was in 2009, before I was diagnosed. When none of the doctors or hospitals I went to had any answers for me, when I was so dizzy I couldn’t walk down the street. Or I woke up with extreme nausea, or I’d wake up feeling like I had a 200 lb brick on my head that didn’t go away no matter what I did. That’s terrifying. When medications they gave me to try did nothing or made me feel worse. All my bloodwork was normal but I felt anything but normal. I knew I wasn’t born feeling that way. Some doctors and even my own family members started to think I was anxious or depressed and making myself sick, when all the tests came back normal and my symptoms were constant for months and months. I had panic attacks. Some people thought I was in pain because I was having panic attacks, but I was having panic attacks because I was in constant pain for no apparent reason. When your own mental health is put into question, you really come face to face with what you know and what is unshakable in you as a person. I knew I was sick and not crazy. And when I was diagnosed I felt vindicated, hopeful for a solution. I have chronic tension type and chronic vestibular (dizzy) migraine. I have to remind myself of this when I get migraines even though I’m doing everything right. When I don’t want to do all of my rituals and taking care of myself. When I want to drink and relax and party like everyone else. When my friends and family have the normal human reaction to forget that I still deal with this every day. I still have to remain cognizant of my limits, because I will pay a price if I drink too much or eat off diet. Yoga is a ritual in and of itself. So is managing my diet and sleep. I am learning to choose to listen to my own needs as I get older and not pay the physical price for ignoring them. It’s easier in the moment to just act like everyone else is acting, have that additional drink, eat sugar, eat bread. But the next day I’ll feel it. My ears will be clogged or I’ll feel dizzier than usual. It’s not worth it. It’s been a process to accept that so many of my actions or inactions have such direct consequences for my physical well being. I grew up eating bread. I never connected my diet to my headaches. .
WB: How do you define the terms “healthy” and “fit”? Do you believe your personal definitions are different from how others might define it (particularly society and popular culture)? If so, how are they different?
For all the conditions I manage I am actually a very healthy person. I eat extremely well, I am in good shape. My definitions are, I think, different from other people because I have been managing conditions since I was a child. I think non-disabled children are a lot more physically fearless than I ever was. I had to watch where I was going or I would fall, always. I still fall sometimes, even though I am always watching where I am going, adjusting, making sure I have something to hold on to on trains, etc. I live in New York City. As a child, I knew I couldn’t climb on things or jump off of things.I had a very clear concept of what I could and could not do physically. I always have. I can get stronger, but children think they’re invincible, I’ve never had that luxury. To be diagnosed with chronic pain at 24, this confused many people, myself included. You’re not supposed to have daily physical limitations at that age. Especially not ones that stop you from working. So on the outside, I look completely healthy and young and vibrant. It’s particularly hard for my parents to accept that this condition has lasted for six years now. I started getting headaches and migraines at the age of three, but they were not chronic and the dizziness wasn’t happening yet, nothing like what began happening in 2009. My father struggles because it is an invisible condition with no known cause, he wants to fix it, and he knows I’ve already been through so much in my life as a disabled person. For my mother it’s hard because of the same reasons, but also because she has fibromyalgia and a slew of other chronic pain problems (although not what I have) and doesn’t want me to have chronic pain too. Most people have no idea I am disabled or have chronic pain unless I tell them. Most non-disabled people my age think of “health” and “fitness” as something they build upon the strong baseline they already have. Go to the gym more, eat better. I start at a different level of ability. Fit means that you are strong for your body type and ability level. I can get in better shape, but fitness takes commitment.
WB: What advice would you give to someone who is struggling to adopt habits and routines to achieve greater health and wellbeing?
MQ: Find something you enjoy that you can stick to. If it’s walking, walk. If it’s sports, do that. For miracles to happen, you have to show up. There is no pill, no magic diet. Incorporate physical activity into your daily routine. It’s going to suck at first. It’s going to hurt a lot and feel wrong. You’re going to want to go back to the couch. Keep showing up. It gets better. Everything seems insurmountable from the couch. Keep showing up and miracles will happen. It’s not as hard as you think it will be. It stops hurting and then you feel stronger. You will get stronger. Healthier. Lighter. Happier. Don’t ever stop and it will just keep getting better. This is the only body you have.