Finals are upon us and attending college while chronically ill is probably one of the most challenging tasks I have ever faced in my short 19 years. Some professors are accommodating, and some are not. Some campuses are very accessible while others could use some improvements in that department. No matter what your challenge is during college, there is a way to work around it. Here are a few tips I have learned from my first year and a half of college. Like me, you too will have to make mistakes and learn from them to see what works best for your situation.
You will have to learn to manage your time better than any of your peers. Not only do you have to worry about writing papers, participating in group projects, and studying for exams, but you also have to juggle doctor’s appointments, physical therapy, picking up prescriptions, and maybe even a hospital admission or two. By the time your first year of college is finished, you will have become the master of time management.
Take advantage of the days when you can concentrate to get assignments done and study for that upcoming psychology exam. Unlike other students, you don’t have the luxury of knowing how you are going to feel in the days leading up to the exam. If you are feeling particularly ill the night for an exam, you won’t be able to cram like other students, which would further tax your fragile body. Stress exacerbates any condition, but studying and having assignments done well in advance will reduce some of the natural stressors of college.
You will fail tests because of pain, brain fog, or just feeling plain sick. I can promise you that you will do less than stellar on an exam because you cannot concentrate. I can’t tell you how many times I have gone into an exam knowing the material, but because I was so distracted by pain; I couldn’t even interpret the questions. If this happens, try not to be too hard on yourself, as there probably isn’t much you could have done differently. This semester, I got a B+ instead of an A because my teacher would not let me make up a quiz I missed due to a hospitalization. Parents may get mad, but if you did your best (and hopefully passed!), that is all anyone could ever ask.
Sleep and relaxation time is not optional. For many college students, sleep is laughable, optional even. Some people can go days without sleep and function just fine. Chronically ill college students know better. No sleep equals increased pain and other symptoms. Sometimes you can’t sleep regardless. Even though you may be struggling to get through the day for whatever reason, everyone will expect you to do just as much, if not more, than other students.
Getting across campus on time can be quite taxing. I did not consider the geography of my college campus at all when I was considering schools. I strongly advise anyone whose mobility can be compromised in any way to study the landscape. If there are a bunch of steep hills, that is probably not the best campus for someone who has to use crutches and a wheelchair regularly like me. While set up of the school is important, do not let your condition be the sole factor in your decision-making process. If you have your heart set on a school for its outstanding academics, apply there. You can work out the logistical issues later.
There is always that one professor that doesn’t get it and insists on give you a terrible time when you ask for reasonable accommodations. While the Americans with Disabilities Act (ADA) is a wonderful start to securing equal opportunities for those with disabilities, there are many loopholes that are often taken advantage of, which usually doesn’t end up working in your favor. You are your biggest advocate. When you start college, you should be the one requesting accommodations and attending the meetings through your school’s disabilities services department. It is okay to keep your parents in the loop, but they should have to hold your hand through everything. Even with the help of the ADA and the disabilities office, I still managed to fail biology my first semester of my freshman year.
Another important tip. Just because a building has a ramp, does not mean that it is “handicap accessible”. Many institutions have these obnoxiously steep and narrow ramps that are challenging to navigate in a wheelchair. Again, another loophole in the ADA. Check the accessibility of your classrooms before the first day to save yourself the stress and additional anxiety.
Because of their medications, it is not even safe for many people with chronic illnesses to consume alcohol. Since this is considered a “rite of passage” in the college experience, many feel like they are missing out, but trust me, it is so not worth the liver damage and the chance of being caught for underage drinking. I promise it is possible to have fun in college without alcohol!
Last but not least, even though you are living with a chronic illness, you are also in the period of your life that is supposed be the best four years of your life. You are no longer a child, but you do not yet have the full responsibilities of an adult. Remember, the pain of your body rebelling is for today, but the memories will last a lifetime. Life is too short and before you know it, these four years will have flown past. Get out there and live it up!
So I have been wheelchair bound for just over a month now and being the athletic person I am, it is driving me crazy. I did manage to earn my black belt in taekwondo December 9th, but I am looking for other ways to challenge myself. So I came up with these fitness goals, which I have been working really hard to meet. Here they are!
Meg's Fitness/Taekwondo Goals
Learn to walk again
Learn to run again
Be able to run a mile
100 sit-ups non-stop (Accomplished 12/14/15)
Edited goal: Over 100 sit-ups nonstop and consistently (Accomplished)
Edited goal (again): 125 sit-ups nonstop and consistently (Currently at 113 sit-ups)
50 push-ups non-stop
Earn Second Bronze Presidential Champions Award (Accomplished 12/5/15)
Earn Second Silver Presidential Champions Award
Earn Second Gold Presidential Champions Award
Earn Second Platinum Presidential Champions Award
Become 2016 State Combat Weapons Champion
Qualify for District Championships
Earn 2nd Degree Black Belt
Some will take longer than others, but they are all obtainable! I just have to keep my chin up and charge the mountain!
I was born deaf, but I wasn’t diagnosed until the age of four because I was developmentally on time. For about nine years after my diagnosis, I wore hearing aids. Every three years or so, we would upgrade to the latest hearing technology. However, when I reached the 8th grade, my hearing aids weren’t working for me anymore, so we consulted with an audiologist and surgeon at my local children’s hospital. We had three options. We could upgrade to the strongest hearing aids on the market at the time to see if they helped me. We could go through the candidacy process for me to receive cochlear implants, or I could choose to communicate with American Sign Language. My family and I opted for the most conservative option that was to upgrade my hearing aids.
Unfortunately, the most powerful hearing aids on the market in 2010 couldn’t give me any viable hearing. I was the perfect candidate to undergo cochlear implantation, so in May and August of 2010, I had bilateral cochlear implants placed. The implants worked wonderfully and with intense therapy, I successfully learned to hear. Having the cochlear implants made high school so much easier. I breezed through most of high school, enjoying basketball, student government, lectoring at Masses, and leading school service organizations
One of my favorite history, psychology, and sociology teachers, Mr. B, had a significant hearing loss. He wore two hearing aids, and they were obviously quite old. Over the years, I noticed his hearing was getting worse. In April of my senior year, the bell had just rung, and Mr. B pulled me aside and said that his hearing was getting worse. Getting new and more powerful hearing aids would be a huge expense on a private school teacher’s salary.
When I got home, I told my mom about the situation and asked if I could give him my “old” powder blue colored ultra-powered hearing aids. After all, they were just sitting in a case collecting dust. She agreed and that night, we sent him an email with the entitled, “Is Blue Your Color?” The next day he responded and said that he would love to try them. The following day, I took them to school, and he found an audiologist who made him some ear molds and programmed them to suit his needs. He loved his new hearing aids and the change in his hearing was so remarkable! Everybody noticed it, and he rocked that powder blue color! My classmates and I no longer had to scream across the room for him to be able to hear us in class. The transformation was absolutely amazing and put a smile on my face every time I saw him.
I gave him the hearing aids in April of my senior year, and I consider that to be my parting gift to him, the faculty and staff at the school, his future students, and everybody who knows and loves him. In giving him my hearing aids, I tried to ensure his future success and access to the world of sound. He loves music, especially The Beatles, and I hope that he gets to enjoy his favorite songs for the rest of his life, with the help of my precious hearing aids.
Mr. B has always inspired me to follow my dreams with his humor and wise advice. I am a sophomore in college studying Emergency Medicine and hoping to go to medical school. I want to be a pediatric cochlear implant surgeon, so I can give other kids the same gift of hearing I have been given. I guess giving Mr. B the hearing aids he needed was my very first step on the journey. It is a small step, but I know it meant the world to him. With the help of his advice and life lessons, I know I can reach my goals. I am forever changed by the valuable and timeless advice he provided me with over my four years of high school.
Since this is the season of giving, I figured I would share the story of one of the best gifts I have ever given a teacher that will last far longer than any card, candy cane, or fruit basket.
During my last hospitalization, I struggled terribly and those closest to me could see it. One morning I woke up to an e-card from my one of my best friends Lily. It told me to check songsofstrength.weebly.com. As it turns out, she made an entire website full of inspirational/motivational songs for me to listen to in the hospital.
I wanted to share this website with everyone, because this compilation of songs is PERFECT for any of those bad, depressing days. This serves as a reminder that it's just a bad day, not a bad life. It also helps me to find the "silver lining" in everything. (Lily's Favorite Saying)
I'm going to keep this one short and sweet, but songsofstrength.weebly.com is a fantastic place to check out some upbeat tunes.
By the way, Lily runs an amazing blog for people with food allergies at http://foodallergysurvivalguide.weebly.com/. There are more to food allergies than people think and this blog explains the impact of food allergies on more than 15 million Americans. It is always very informative and well-written.
Thank you for always watching out for me, Lily and jabbing me with an epi-pen twice today. I don't know what I would do without you!
Since I have had so many requests to see my Black Belt Address, I decided I would post it here.
Black Belt Address
Ms. Meghan L. Bayer
1st Degree Black Belt
December 9th, 2015
In my mind, earning the rank of 1st Degree Black Belt is the end of the “color belt training camp” and the entrance to the big leagues where I will be challenged with more advanced techniques and a higher level of fitness. Becoming a black belt is such a surreal feeling for me, because it has taken two years of training almost every night to get to this point. I have had to fight through pain, blood, sweat, tears, and injuries to reach this goal. With that being said, I would do it all over again. I’ll always find a way to do something. It may not be the traditional way, but I will make it work.
It takes a village to create a black belt. I would like to thank my parents for encouraging me to follow my dreams and never holding me back for fear of the unknown. They have paid for my tuition, testings, tournaments, and listened to me complain when I just couldn’t get a technique down the first time. I would also like to express my appreciation to my friends who have put up with my excuse of “Oh, I have taekwondo tonight. I’m sorry I can’t make it,” through the years. I am lucky to have friends that truly understand my passion for the art.
I don’t know where I would be without all my taekwondo classmates pushing me to be my very best. Whether it’s a pat on the back or a quick high-five, they know how to pick me up on the worst of days. It’s their commitment that makes me want to be a better martial artist and leader. When I was preparing for my black belt recommended, it took every student practicing their self-defense with me to make me confident for testing.
I would also like to thank Corinne Bly, a 3rd Degree Black Belt in the ATA from New Hampshire, who trains under Master Roy. We both have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome and are so very passionate about taekwondo. We are also very close in age, which makes it very easy to relate to each other. She has become a mentor to me (My ATA Sister) and in my mind, she is the true definition of what it means to be ATA Strong.
I owe a debt of gratitude to the staff at the Children’s Hospital of Pittsburgh for their exceptional care for over half my life. It is through their ability to think outside the box in terms of treatment and to persevere when their best attempts fall short. I would not be where I am today without them.
Words could never begin to express my level of respect and gratitude for my exceptional instructors for their hard work, dedication, and commitment to each and every student. Their willingness to accommodate every student is truly admirable.
My journey to black belt has been a windy one with a few detours. The most important thing I have learned is how to mentally cope with those detours and keep moving forward. Gaining that control over the mind and the body has been invaluable.
As a result of my martial arts training, I have more self-confidence. I have learned to set goals and persevere until I reach them. Most importantly, I have become a much stronger leader as a result of the skills learned in the leadership program and helping out in classes. I have never had any problems with public speaking, but since starting taekwondo, I have successfully spoken at several engagements.
I know that with this new rank comes new and greater responsibilities. With my instructor's blessing, I would like to continue working with the Karate Kids and the ATA Tigers. Ultimately, I would like to obtain my Level 1 instructor certification next year with a goal of becoming a certified instructor further along my journey. I would like to continue competing in tournaments. I have been saying it for a long time, but I really want to be a Pennsylvania Combat Weapons Sparring State Champion. I am hopeful that if I do well enough in the tournaments in 2016, that I will be able to attend the District Championships. I really want to see how I match up to other people my age and rank, so I can push myself to further improve my technique.
As Grand Master Soon Ho Lee said, “There is always more to learn."
Kylie Jenner has hit a sensitive nerve on those individuals with serious physical disabilities that require the use of a wheelchair. Right now, I use a wheelchair full time as a result of dystonia and another undiagnosed neuromuscular condition. I can't move my feet or toes which makes walking (I mean dragging my feet) nearly impossible and unsafe). My wheelchair, although clunky and extremely heavy, allows me to push myself around the house, the stores, and maneuver my way around a large city campus.
Many people don't even like having other people sit in their wheelchair if even for a second. I don't mind having a friend or two sit in my wheelchair to allow me to enjoy the comfort of the couch. It is always with my permission though. We are college kids in tight dorms. Limited furniture sometimes calls for additional seating. Even then, they understand that wheelchairs are not a joke and only intended for those who need them most.
Jenner's combination of the immodest outfit, posing, and the use of the wheelchair were a bad combination. While the stars are used to posing and wearing insufficient, revealing clothing, the wheelchair shoved the issue over the cliff.
There is enough stigma about physical disabilities, both visible and invisible, in addition to mental illnesses. We do not need people like able-bodied people Kylie Jenner provoking conflict in a negative light. Media coverage like this is what made applying for my permanent handicap placard so psychologically challenging. When people mess around with chairs, the legitimacy of physical disabilities in the eyes of the general public is reduced. Physically disabled people everywhere have a very valid reason to be angered by Jenner’s poor portrayal of one with physical disabilities. I am certainly offended.
Being an able-bodied person herself, Jenner is likely to see wheelchairs as confining, restricting, and limiting even. For those of us that rely on these mobility aids to get around and lead fulfilling lives, these wheelchairs are the way out into the world. God forbid she should ever need a mobility aid herself, but she won’t fully understand the magnitude of this until she has experienced life in a wheelchair.
***NOTE: I do not own this picture***