12 thoughts on “Illness

  1. I never for a day thought that I would be diagnosed with a “juvenile” disease at 17, nearly 18 years old. As people, we are too quick to believe that nothing bad will ever happen to us. When it does, though, there are usually many obstacles that come with it– emotional, physical, the list goes on. I must now give myself at least 4 shots a day to stay healthy. If I don’t keep up with this regimen, life-threatening consequences will follow. This is life with Type One Diabetes as I suddenly knew it at 17, nearly 18 years old thinking it would never happen to me. This is when I learned to do the things I thought I couldn’t do, but realistically the things I could do, and with great resilience it turned out. When I first heard the idea of “doing the things you can’t do” after my diagnosis, my perspective on everything I once limited myself to had flipped. In the hospital they told me that giving daily shots would end up being just as routine as brushing my teeth. Simple concept, yet I thought that there was no way that I’d ever be able to to 4 shots a day, 28 a week, 1,460 a year routinely. This was until I remembered that the only thing holding me back was myself, and in order to keep up with my less-than-average pancreas I would have to do this, and with great meticulousness, for the rest of my life.

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    • I was diagnosed with type 1 diabetes at age 13, which was the scariest moment of my life, so I know first hand how hard it is to manage the daily regime. I love how you mention that even though times were so tough, you were able to overcome the obstacles that you face. Every day gets better!!

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  2. She was born weighing a whopping three pounds, six ounces. If my dad had caught her on the end of his line, he would have thrown her back.
    Summer babies were supposed to be healthier, at least that’s what they say. Monique always had a knack for breaking stereotypes. She’d had more surgeries in her first days of life than most have in a lifetime. “It would be a miracle if she could walk on her own in her lifetime.” Little did the doctors know my older sister had more in mind than just being able to step.
    They labeled her as legally blind, deaf, and later, was told she belonged in the category of C.H.A.R.G.E. Syndrome. I’m sure you have already believed my sister is somewhat like Helen Keller. This is incorrect. She owns one hearing aid, allowing her to hear moderate to loud sounds, and big coke bottle glasses that help her see a great deal, while also letting her look like “Family Matters” never got cancelled and Steve Urkel’s glasses are making a comeback.
    It is normal, even natural to hold fixed images of individuals in this world. We better understand and feel for situations when they are classified in our brains. Though too often these images are oversimplified. Monique could not be explained simply, it’s just not how she survived. Whenever out I’d feel sick over the stares that would follow her presence. There is so much more to my amazing sister than her physical incapabilities and it was always a struggle for her to prove herself, in jobs, in school, in life. I began to hate the words diagnosis, handicap and illness.
    Then she became really sick. The headaches and the dizziness slowly crept up on us. After an appointment with her doctor we realized this was not a common cold. Hydrocephalus is a diagnosis that means there is a buildup of fluid, cerebrospinal fluid, encircling your brain. Symptoms include headache, blurry vision, loss of balance and thinking and memory issues. Doctors and nurses rushed to examine her and performed a few surgeries to attempt to relieve the built up fluid. Four surgeries later and her condition had only worsened to an extent where prayers were being said on the hour. A combination of all of her other diagnosis led doctors to attempt other solutions, and like flicking a light switch, her condition was suddenly better than before the last few months of surgeries. The physicians used alternative thinking when it came to her special situation and we are so thankful she is okay now. It is believed that her C.H.A.R.G.E., a syndrome only recently diagnosed less than two decades ago, had created the inability for her body to react in the same way a typical Hydrocephalus patient would to surgery. It is also a possibility that Hydrocephalus could be a frequent happening in people of C.H.A.R.G.E. In time we will share her story with the C.H.A.R.G.E. community to raise awareness to a situation that could affect others. My family and I are frequent visitors to the C.H.A.R.G.E. conferences around the nation where they gain funding and research to help the syndrome, being only recently recognized. The conferences have opened up my eyes to the reality that research and the health community are always expanding and the importance in participating and recognizing the community and others like these.
    Monique’s diagnosis will always be with her and a part of her, and people will always stare. The labeling, and underestimating will still occur and I do believe the general population has a long way to go before this can change. But through education and representation I believe it will. Until then Monique will continue to keep proving her wrong. And now I find it to not be upsetting or uncomfortable to let others know my sister is blind or deaf. It’s impressive and inspiring at how much she has and can accomplish in different ways than the norm. Monique today is to start her senior year at Salve Regina in the fall and healthier than ever, for which we continue to thank God. Being her little sister has provided me with a unique image of the handicap community and I couldn’t be luckier to have her in my life.

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  3. One thing that you should never take for granted is family.
    When I was young, I had the best relationship with my mom. She was the cookie-cutter definition of the perfect mother. I could tell her everything and anything, and she would never be upset with me, no matter what.
    When I was in middle school, I started to have a bunch of medical problems, alongside the anxiety and depression I had been struggling with for years. My mom did everything she could to make sure she could be there to take me to doctors and everything that came with them. She ended up quitting her job after one of my surgeries because her boss was “tired of accommodating her family needs”
    Out of nowhere, the “super mom” I had always relied on began to change. Her behaviour was eccentric and she would yell and call me names for no reason. We found out that she had an unknown illness that was similar to Dementia. The doctor told us that even if they could find out what was causing her brain to erode, they wouldn’t be able to cure her or make it better.
    I immediately felt sick because I had been resenting her for how she was treating me; I thought she was depressed and was taking it out on me. Now our roles are completely reversed: I have to take care of her.
    I’ve struggled a lot because of this, and the most difficult part is knowing that as my physical and emotional problems get better, hers will only get worse. These past few years have not been easy, and it has really taught me to appreciate what you have before it’s too late.

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    • I think you are so brave for taking care of your mother while struggling with your own illnesses and managing to further your education. I wish you the best of luck.

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  4. My views on the world, its’ materialistic aspects and my gratitude towards my on health shifted when I watched my uncle live and cope with MS. MS, or Multiple sclerosis, is a chronic, typically progressive, disease involving damage to the sheathes of nerve cells in the brain and spinal cord. My uncle was diagnosed when he was 19 years old growing up next door to him enduring this progressive disease allowed me to see its’ devastating effects. One summer I was in his house with my cousin when we hear a loud noise coming from the front door. We ran over to find him hanging off the steps unable to move. As two young teenagers, we struggled to move my 50 year old uncle who had lost the strength to lift himself. Despite the obstacles he has overcome, my uncle is the most positive and optimistic person I know. Even though it might be painful for him, he refuses to use a wheelchair or even veer from his everyday tasks. Being 18, I cannot imagine what state of mind I might be in if I was diagnosed with MS on my next birthday. Having my uncle in my life has showed me that illness does not have to be a detrimental effect on life. I believe that the reason my uncle stays so positive is because Multiple sclerosis is not strong enough to take him down. I believe he is fighting for a cure, and I believe that someday there will be one.

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  5. I have always tried to live life like everyday was going to be my last. I haved learned never to hold judgment to anyone, and to forgive and forget. Because in the end, it really never matters who was right or wrong, how someone looked, or anything like that.

    I came to value those beliefs during a very rough time in my life, after I was given time to think about what I could take out of the whole experience. I spent an entire week, watching my grandfather slip away from life, slowly, and painfully. He had fought this nasty disease for a good portion of his life. It was never going to stop him from living. But, in those last days, nothing mattered anymore. Everything that he could have been embarrassed about, anything he cared about, anything he had done, didn’t matter to anyone anymore. Not even himself. We all cared about what was going on in the moment. Not what was happening in the future or what had happened in the past. So being the 17 year old I was, I had to find something that I could get out of this awful situation. Every second of EVERY life counts. It may not matter in the end, but your life is only so long. And when your times comes, the last thing you should have to worry about is how you are leaving someone wronged, or on a bad note. Life has to be lived in the moment. Life’s moments should be enjoyed and cherished. Because you never know when one of those moments will be your last and how that last moment affects the people around you.

    So moral of the story is the live and let live. And the really live life to its full potential.

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  6. My mom is a funny, sensitive, spontaneous, beautiful woman. She is also an alcoholic. Her alcoholism has been the main source of chaos throughout my life, and here are some of my worst memories I am sharing to get off my chest. On the one-hundredth day of second grade, I and everyone in my class got to bake cookies and bring them in to share. I made peanut butter cookies with a Hershey’s Kiss on top, yet I woke up the next day to find mom still in bed. Despite my best attempts to wake her, she would not; I cried all day because I could not go to school and celebrate with my friends. In 6th grade I dragged her to bed after she fell and injured herself, and in 10th grade when I pulled up to my house, proud of myself for finishing my first drive time, to find a police car and ambulance in my yard. My heart never sunk so quickly than it had in that moment. “It happened. My worst fear. She’s dead.” She wasn’t. My worst memory is watching her being carried out in a bag by four EMT men while a policeman tried to distract me by asking questions about a Star Wars book he found in my room. When you endure a traumatic experience, you are left with a mark. My mom’s alcoholism left that mark on me, and despite that, I love her immensely. Forgiveness and sympathy are two important techniques I use now to fully live my own life.

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  7. When we all grow old we want to be as healthy as we can, and live the longest life possible. My grandmother was very healthy for her age, when she was 80. She would still grocery shop, cook, drive, etc. The past few years have been hard on her. She slowly began to lose her eye sight until she became legally blind and if losing your eye sight was not bad enough she began to suffer from Alzheimer’s which causes memory and cognitive problems. The stroke she had last winter sped up the process and now she can not walk due to her left side of her body not being able to work. My grandmother will always be asking where she is and who is with her multiple times a day because she never can remember. She lost all memory of when her children and grandchildren were little. Going to see her is hard wondering if she is still gonna remember you are her grandchild or if Alzheimer’s has taken that memory away from her yet. There is no cure for Alzheimer’s, so all we can do is watch the disease slowly take her away from us.

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  8. No one should ever take their freedom for granted. As I sit here and type away, my brother is currently sleeping with a tube feed pumping into his stomach, intaking all the calories he can get. This is just one aspect of his illness. On the day my brother was born, he was fighting for a chance at life. Mucus clogged his lungs, choking him. He went blue in the face as my mom held him in her arms. His life slowly slipping away.
    After that day, my parents would be fighting alongside my brother for years to come. Still today, at the age of 22 my brother is still fighting. In his adolescence, he spent most of his life inside of the hospital instead of at home. He was underweight; he had a constant pressure on his chest. It was a struggle for him just to breathe.
    As a young boy, he tried to be like every other boy his age, he tried his best to participate in sports. It didn’t last. He so badly wanted to be like other kids his age, but he realized as he got older that he was different.
    Today my brother barely leaves the house. His illness, Cystic Fibrosis, keeps him locked in chains. He has so many pills to take, so many treatments to do, he can’t leave the house for that long. I am so thankful that I have this opportunity to go to college and get a degree. My brother doesn’t have that option, because he would be absent more than he would be present.
    Cystic Fibrosis has stopped my brother from living the life he truly wants to live. So please, live the life you dream of living, because there are others who don’t have that privilege.

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  9. As a teenager, I always thought that I was invincible. That nothing would touch me and that I’d live a good and long life. I’ve always been somebody who’s never had a poor health issues, I was always lucky to never have had to take medicine every day, or go to the doctor’s office every couple of months. Now that’s my reality. During my junior year of high school I as diagnosed with an IBD (Inflammatory Bowel Disease) called Ulcerative Colitis. It’s something that affects me every day between what I can eat, how much energy I have, and the most prominent thing is how frequent I have to use the restroom. This was hard to deal with at first but then with the help of friends and my family it made me feel more comfortable with this news. Without them I probably wouldn’t be as good as I am right now. My girlfriend makes sure I’m the best I can be, my family makes sure I’m managing myself okay and my friends make it so I don’t feel embarrassed. I came to believe that with your friends and family, you can overcome any obstacle, you just have to put in faith in yourself and keep your head up high.

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