Destinee Siebe

@destinee-siebe | contributor
Originally from Louisville, Kentucky, Destinee Siebe is a bassoonist and music history student at Baldwin Wallace Conservatory of Music in Berea, Ohio. She lives with a chronic illness and has a history of depression and anxiety. Each day, she follows the words her Grandad used to tell her every morning before school: “do the best you can.”
Destinee Siebe

How Listening to Classical Music Helps Me With Chronic Illness

My university has a big thing for Johann Sebastian Bach. For 86 years, we’ve hosted a festival in honor of the classical music giant; it has always led to the performance of a major Bach work (or, on two occasions, a related composer), but these days it also includes scholarly lectures, food trucks and a 5k. Last year, the Friday night concert proved to be a healing experience just as much as an artistic one. I have a chronic illness, so I’m in some degree of pain every moment of my life. Even though I can usually hide it, bear it and live my life despite it, I am always experiencing some degree of all-over body aches and exhaustion that neither painkillers nor extra rest can solve. Leading up to my own Bach Festival debut for the Saturday night show – not to mention the endless workload associated with the end of the semester – I was feeling particularly achy when I took my seat in the balcony for the Friday night concert, featuring our school’s Motet Choir. When I was still a music therapy major, I learned about the concept of Gate Control Theory: the idea that the peripheral nervous system cannot process multiple stimuli at once. The simplest example of this? When a person experiences chills, whether from the cold or from witnessing beautiful art, they are temporarily incapable of experiencing physical pain. Board certified music therapists seek this result for their clients’ pain management, and I frequently seek it for myself. To be clear: music and other chillingly beautiful arts are not a cure for complex chronic illnesses, but having a few seconds where I can escape the prison of my body are more than worth hours upon hours in practice rooms and concert halls. This particular Bach Festival concert, however, gave me chills for its entire duration. Bach cantatas are no easy feat to sing, and I was awed by the superb work of my friends and classmates onstage. I’m sure it would be poignant and moving to describe how their music gave me a rare chance to breathe, but the experience escapes anything about which I could possibly capture in a blog post. To reiterate: chronic illnesses are complex medical issues, and a pleasant tune will not cure any of us. Believing our symptoms and funding medical research are the long-term needs of those living with ME/CFS like I do. However, in the meantime, experiencing beautiful art is not such a bad thing for the body (or the mind and soul). I’m not in the least upset not to be onstage for any concerts this year; I can’t wait to cheer on my classmates from the audience and allow their hard work to do its magic. The music which gives me chills may not be what moves you. There’s no rule that it has to be classical, but that’s usually what works for me. I have a short Spotify playlist of some of my favorites.

Destinee Siebe

The Difficulty of Staying Awake With ME/CFS

My roommate once lovingly described me as “a kind and sleepy human.” I have myalgic encephalomyelitis. It should be no surprise that a condition also known as chronic fatigue syndrome would lead those who live with it to be extra tired, but sleepiness is practically one of my personality traits. Though I didn’t begin experiencing the body aches and weakened immune system of ME/CFS until high school and wasn’t diagnosed until college, I have always been an intimate friend of a cozy nap. Always the first to fall asleep at slumber parties, neither loud noises nor caffeinated soft drinks helped me match the late night capacities of my childhood playmates. I have endless anecdotes, from face-planting into my food for dreamland to snoozing during the jousting at Medieval Times. As I reached my teen years, these patterns started to become much more of an obstacle. By my senior year of high school, I frequently couldn’t stay awake past 7:30 p.m. I’d get a full 10 hours of sleep – arising at 5:30-ish to catch my 6:30 a.m. bus – and still need to nap on the ride to school. I was even spending some of my waking hours in lounging positions; my afternoons and evenings consisted exclusively of laying in bed, a toxic result of comorbid malaise, all-over pain and clinical depression. If I completed my homework at all, I frequently did so in the wee hours of the morning because I had no remaining capacity for focus after school. If I’d had marching band that day (a physical struggle in its own right), I would sometimes only spend an hour awake at home that evening. That time was meant to contain meals, showers, homework and recreation; it usually only contained the first two. A beloved high school teacher once shared an opinion with which I must vehemently disagree: that sleeping in class is the most disrespectful thing a student could do, and that it could only ever stem from a place of malice. Of course, I know that teachers work tremendously hard, and that the sight of your lecture falling on sleeping ears will always be disheartening, but even with the greatest amount of effort, I occasionally can’t help but to nod off for a short while. When your cell phone runs out of battery, there is absolutely nothing you can do to make it work again except to charge it. This is precisely my relationship with sleeping, and I have to plug in a bit more often than many people due to my illness. I certainly try to avoid doing so in public, but keep in mind that it took two whole years to convince my body to stay awake during the third quarter of high school football games. (You read that correctly: while the rest of the stands cheered for the team, I sought out a dream.) I’ve been fortunate enough both to learn more about my body and to have some flexibility in my schedule during college. I’m hardly the only college student to avoid 8 a.m. classes if at all possible, but also plugging in time for homework in the earlier half of the day makes my assignments more likely to be completed at the highest level. I continually choose residence halls that are quite close to the building where I spend most of my time, so that I can sneak over for a nap if I have the chance. As a result, I’m able to stay awake for more hours of the day and can usually avoid public sleeping, though my favorite barista did catch me napping at our campus coffee shop a couple of weeks ago. I also cannot understate the help of the privilege I experience in having an overall good quality of life. I am fortunate to have wonderful friends, to study a major that keeps me engaged and interested and to live in an area where the arts flourish with opportunities to observe and participate. I’ll always need more sleep – my body demands it due to ME/CFS – but it’s a lot easier to stay conscious when you have plenty of good things for which to stay awake.

Destinee Siebe

Little Ways My Chronic Illness Affects My College Life

Living with myalgic encephalomyelitis (also known as chronic fatigue syndrome) while also balancing a full-time college course load can be immensely challenging. Attending each class and meeting—never mind all of the actual work to prepare for them — can be unfathomable when your body will not let you continue without rest. I’ve learned, however, that some of the ways that ME/CFS sneaks into my life are small, relatively harmless, and sometimes entertaining. Let’s check out nine ways in which my daily college life is shaped from chronic illness. 1. I’ll show up, but I may not like it. My body may be in the classroom, but my mind is sometimes too exhausted to be found. If I’m hurting a lot, I’ll show up just to avoid using a precious excused absence, only to have to recopy notes later because I had nothing left in the reserves to actually participate. (I go to a pretty small school, so I can’t just expect my professors to not notice if I’m absent.) Recently, I attended a rehearsal armed with an ice pack in hand. Had I just injured myself? Nope, just achy. Believe me, I’m adding this to my regular bag of tricks to get through those obligatory class nightmares. 2. Unlike every other college student, I cannot live on coffee alone. Caffeine is truly awonderful thing, and there is hardly a student I know who doesn’t at least occasionally enjoy a cup of coffee or some sort of energy drink. And while I love coffee, I simply can’t drink it every day. Caffeine makes me hyper-aware of my chronic pain and only further facilitates my inevitable energy crash. I mostly stick to tea. 3. I hate Fridays, not Mondays. I personally feel like Mondays are bullied a little too much. Unless my weekend was overflowing with work, I generally start off a week feeling pretty OK. By Friday? I’m barely hanging in there. Props to my bassoon teacher for not giving up on me despite several end-of-week lessons in which I was all but useless. 4. I wear dresses most of the week, mostly out of convenience. Post-secondary academia is the home of sweatpants and free T-shirts for all, so my classmates will often perceive my dresses as a sign of effort into my appearance. Nope. Putting on a dress means I don’t have to put on pants, and I will save those tiny bits of energy wherever I can find them. 5. What’s a party? Despite what the media may tell you, there are plenty of 18-to-22-year-olds who do not binge drink every weekend. Some choose not to out of moral or religious opposition, others because of alternative obligations, some simply aren’t interested. Me? Even if I wanted to go out every weekend and shove my awkward personality into the party scene, I couldn’t ever make it. Let’s be honest: I’m asleep way before the parties start, even if I do sometimes wake up as late as my hungover classmates on Sundays. 6. I was once almost late to class because my shoes weren’t comfortable enough. The inspiration for this article, in fact, came from a recent morning in which I walked five steps out of my dorm and realized that my extra-achy feet were not having that pair of shoes that day. Were they high heels? Nah. Sandals? Nope. They were hi-top sneakers, which normally pose no issue for me. I went through the same trouble when I tried a pair of booties. I finally made peace with my canvasslip-ons and scurried to class, arriving only just in the nick of time. 7. I am the professional procrastinator. No, really. On many occasions, I’ve planned to work on major papers and projects in the early evening, only to realize that I do not have strength enough to focus and do it. I have learned that trying to work through this outside of emergencies is often for naught, because I will spend so much time redirecting myself that the work never really gets done, anyway. Instead, I’ll go right to sleep, set my alarm early, and pray I feel better by morning, which is still better than stressing and pushing myself only to still not complete the assignment. In all honesty, I passed Intro to Music Therapy on this method alone. 8. I chose my dorm this year solely based on nap convenience. One privilege of being anupperclassman is the right to choose your own dorm. I proudly chose to forgo the comforts of air conditioning and a kitchen space in other halls in order to live right next to the building where most of my classes occur. It doesn’t matter to me that this residence hall is the oldest and least glamorous on campus; naps are too convenient for any of that to matter. 9. I alone keep the dry shampoo industry alive. Perhaps one of the biggest personal differences in my daily life from pre-illness to now is my frequency of showering. In high school, I showered every day — sometimes even multiple times a day — and washed my hair each time. Now? I still shower enough to keep from smelling funky, of course, but my hair will get washed three times a week at most. It’s just too much work for me at the end or beginning of the day to hold my arms above my head for an extended period of time. Dry shampoo, which only takes seconds to spray and be done with, is a staple in my routine. Besides, who really wants to spend more time than necessary in those nasty communal showers?

Destinee Siebe

In Between Good Health and Disability With Chronic Fatigue Syndrome

If some chronic illnesses are severe enough to be comparable to cancer, then I have the equivalent of the common cold. And while this is a privilege, there is still much guilt — and much learning — to be had while living in between sickness and health. In the fall of 2015, during my freshman year of college, I was diagnosed with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis. Some of the symptoms associated with this illness — tiredness, all-over body pain for no apparent reason, issues with focus and short-term memory — have been a daily experience since at least my junior year of high school two years before. My bassoon teacher even noted as early as when I was 14 or 15 that I might have developed “arthritis or something,” as he phrased it; my hands would sometimes painfully lock in half-made fists that took much effort in order to unstick. In my senior year of high school, I usually went to bed at 7:30 or 8 p.m. because I could not stay awake any longer, only to wake up just in time to be ready for my 6:30 a.m. school bus the next morning still as tired as before I went to sleep. Last fall, however, began the worst flare-up of these symptoms thus far. For most of October and November, I merely existed: I went to classes and rehearsals, ate two meals per day, and otherwise stayed in bed. Once, the weight of both complete exhaustion and moderate pain on every square inch of my body had me collapse at a table in the dining hall during lunch, and an acquaintance had to help me back to my room because I could not get there myself. On another occasion during this period, a friend gave me a gentle tap on the shoulder to get my attention, and the pain of that slight touch radiated through my entire body and, for a moment, my whole world became the sensation of falling down an endless staircase head-first (that poor friend tells me he still feels bad about this incident, and now always asks before giving me hug or otherwise touching me.) This is my life during a major flare-up, which will usually happen two to three times per year and last for several weeks. A smaller but still noticeable increase in difficulties — a small flare-up — may only last a day or two and will usually occur every two to four weeks for me. I also live with a pretty fragile immune system due to CFS, so I end up with pretty much every virus which goes around and a few extra colds and such to boot. On an average day, though, I am only mildly inconvenienced by my illness. My life is usually not too heavily restricted due to this disease. While some with CFS may even find it difficult to leave the house most of the time, I can usually make it through my day without visible incident. I experience a lot more aches and pains than a typical person, I take more breaks and sleep for more time with less of a refreshing reward, but there is no visible marker to indicate that I am unwell. While the unrelenting wave of strangers and loved ones alike proclaiming that “you don’t look sick” is a phenomenon experienced by many with chronic illnesses, I tend to give these statements extra merit. I mean, I don’t look sick. I am 19 years old and a full-time college student studying music therapy who also works in a nursing home. I speak so little about my illness that I’m not even sure that most of my family members know about it; I usually only explain it in the midst of struggled, out-of-breath apologies as to why I can suddenly barely walk. I try not to talk about my chronic illness because I fear responses of either pity or unbelief. I have felt guilty about my illness, both in reference to those who are also chronically ill as well as to those who are not. There are people with illnesses who, as mentioned, may be primarily bed- or wheelchair-bound. Some people cannot eat or use the restroom in a typical or simple manner, some cannot communicate effectively, and although my illness is very real, it seems silly to complain about being tired or achy or foggy. This is so small — not for all people with CFS, but for me in particular — that it almost sounds selfish to mention. Likewise, I am wary of mentioning my illness to those who are not sick because being tired might appear to be a phony excuse, not a legitimate issue. It is a strange in-between where, if we were to split society into two groups — sick and not sick — I do not know to which I would belong. Thankfully, this is not the case: we each have the opportunity to be ourselves. As my school’s composer-in-residence, Dr. Clint Needham, wrote in his piece “Advance Always,” for which I played contrabassoon in the world premiere: “We embrace our imperfections, we embrace with courage. We are patient with you and with ourselves. We give the best of ourselves to the world. We bend (not break!) the rod of strife, gently and with time. We are who we are, and we are that, perfectly!” Destinee (first row, far right) with the Baldwin Wallace Symphonic Wind Ensemble at the Kennedy Center I tend to advocate for those living with illnesses through my everyday behaviors, not my personal testimony. I do my best to be patient and slow to judge, for what may be a simple task for me may be a complex struggle others depending on their circumstances. Perhaps this is the greatest gift my illness has given me: tolerance. In elementary and middle school, I was the total brainiac type: straight A’s, captain of the quick recall team, hand eagerly flew up in the air each time a teacher asked a question. Especially in elementary school, I could never grasp why some of my classmates needed extra reviews or additional help because I was blessed with the ability to understand nearly every school lesson on the first go. Now, I realize that different abilities — physical and intellectual — may exist for reasons that cannot be seen, or even for no logical reason at all. I find myself somewhere in between good health and severe disability, and I am learning to find a place for it in my life where it is not all-consuming but also not treated with shame. I am now a college sophomore who loves her school and her studies in music therapy, who works in a nursing home, who loves her friends dearly, who spends hours upon hours on YouTube… and who is just a little bit differently-abled because of a chronic illness. I am who I am, and I am that, perfectly!