19 thoughts on “Illness

  1. Being diagnosed with epilepsy was one of the most impactful things that ever happened to me. People view my learning disabilities and epilepsy as a weakness, but it’s not. If anything, it changed me for the better. It helped me become a strong, independent, and motivated person. Before my diagnoses with epilepsy, I excelled in my grade level. I was able to understand every concept; my teachers would always praise me about how brilliant I was. Then a year later I felt like my life was falling apart as I was diagnosed with Petit mal seizures. I used to enjoy and love school but after my diagnosis learning became very difficult for me. I developed severe anxiety. It felt like my life was spiraling out of control. I felt like I could never tell anyone about my epilepsy. I didn’t want to be known as “the girl with epilepsy.” I felt like a freak and an outsider. I thought I had done the perfect job of concealing my condition from my peers. For ten years I was able to hide my diagnosis from them. The truth was I had to come to terms with being an epileptic. My biggest fear was now that I would be shunned by others because of my condition. I didn’t even accept who I was how would other people feel about me? But by the time I turned seventeen everything changed for the better. After years of hiding something that seemed so big to me my friends reassured me it was no big deal. As crazy as it sounds, it seemed like having that grand mal seizure at school helped me understand; I do have epilepsy. I wasn’t looked at in a different way, if anything people wanted to help me. Throughout the years this has really morphed my personality into a determined go-getter, with a light-hearted personality. Something that’s a bump in the road is not going to interfere with what I want to do with my life. I’m determined to be successful as I continue my journey of lifelong learning and personal growth.

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    • Really like your statement Emily. I have a close friend with epilepsy and understand the trials and tribulations that come with it. I’m glad that you are able to even surpass that and still are determined to achieve your goals no matter what. It’s people like yourself who are resilient and strong that inspire me to keep going no matter what circumstance. Thank you for sharing your story.

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    • Well put Emily. I also has petit grand Mal seizures (absence) as a child which I have now grown out of, but I will never forget the stigma put on illness as I was growing up. After I realized my friends an family didn’t see me differently I came to embrace who I am. I’m confident you will be successful and live up to your dreams! go get em girl!

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    • Hello Emily, I really enjoyed reading your story. I myself do not have the same illness, but I have disabilities so I can relate. Especially with the hiding it from people, I let it bottle up inside because I did not want people to think less of me. But, I realized that I had to overcome the fear and let people in rather than hiding things. Honestly, it feels better being open instead of feeling like your living a double life by putting up that filter. Props to you girl, stay strong and good luck! 🙂

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    • I really like this post and what its about. One of my best friends suffers from seizures and was so scared about what everyone thought of her also. It was hard watching her feel so judged and trying to hide it also. She is one of the strongest people that I know. It’s the people who suffer that come out the strongest and it amazes me that people as strong as you exist.

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    • I really enjoyed your belief statement Emily, I understand where you’re coming from when saying that an illness or disability can change you for the better. I’m happy that you were able to overcome the difficulties that your illness gives you.

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  2. When I was fourteen I started to become aware of not just myself, my mom, dad and sister, but of my grandfather. A big part of my childhood was my grandpa. To this day, he still is a influential part of who I am. I still remember the summers, spending time with him and my grandma. How he used to call me and my sister his “palooka’s,” the funny faces he made at us, and the dinners my grandma made. Whenever I think of those times, it reminds me of all the memories I have with him my younger sister, but then the question emerges… does he remember?
    Through my life, as I pondered this question, I began forming my own opinion of the matter. I ask myself “What would it be like to have alzheimer’s?” Would all these memories be gone, and if so, would I be aware? That is the scariest part. With no memory, no moment in life is ensured.
    My grandfather has went through a lot in his life. For instance, fighting in the Vietnam War and having two children to watch grow and live their own lives. So are all of those memories lost too? Or is it just recent ones like what he ate for dinner? It is hard to know and even harder to understand, but it keeps my mind racing.
    At this point, a pessimist would view this as “well what’s the point of forming these memories if there is a chance that one day we will only grow to forget them all?” But as an optimist, I believe that though not all memories are guaranteed, it’s the feelings and relationships you carry during those moments. It’s about the moment with my grandfather, and his disease is teaching me that.
    My grandfather’s alzheimer’s is teaching me to live in the present and make the best of every moment. It is showing me to not take anything, or anyone, for granted, because one day it may not be there, or may not be remembered. It has shaped me into the person that I am today. My grandfather has showed me how to live and make the best out of life. Not to live in the past, but the present, and not to hold grudges. It is important not to be hateful and to make the best of every situation.
    My grandpa goes through this every day and yes, he is forgetting memories, but has not once been hateful or angry. He sits and embraces it all because he knows that he needs to pay attention to the present and what is happening now, because one day it might not be there. So throughout my life I understand that things can be tough, but you need to keep your head up, and take it all in because living in the moment is the best thing to do. I am lucky enough to have learned this from one of the most important, and influential, people in my life.

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  3. I do not remember exactly when my great aunt was diagnosed with Alzheimer’s disease. I remember visiting her in assisted living with my grandmother, her twin sister. Because she lived in Wisconsin, my family was only able to visit her once or twice a year. My aunt went from forgetting names to withdrawing completely, becoming completely dependent on the assisted living staff to do everyday tasks, such as using the bathroom and eating. Three years ago, my grandmother passed away unexpectedly. Before my family flew back home, we visited my great aunt. She was propped up in a wheelchair. Her eyes barely opened when we sat down with her. Her nurse, who was struggling to feed her, assured us that she knew we were there. My mom told my aunt gently that her sister had passed. After living as a shell of a person for months, my aunt began crying. Tears fell from her eyes as her shoulders shook. She remained agitated as my family hugged her and kissed her goodbye. I was the last person to say goodbye. I hugged her and kissed her cheek, telling her through tears that I would be back. Before I pulled away, she kissed my cheek, something she had not been able to do for a long time. In that moment, I knew that my aunt was saying goodbye and giving herself permission to let go. She passed away three months later. Saying goodbye to my great aunt was the most powerful, emotional, and beautiful experience of my life. From her, I learned that raw strength can be found in love, and that no matter how hopeless life seems, love will never die.

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  4. A tick bite can ruin your life; it completely changed mine. One small tick bite is the reason why I have a long list of health issues: Lyme disease, chronic fatigue syndrome, Hashimoto’s thyroiditis, fibromyalgia, leaky gut, depression, anxiety, and several Lyme co-infections. All from one tick bite I received at the age of ten. Lyme disease takes over one’s immune system, causing it to attack the hosts body, as opposed to the bacteria. As a result, I am left with numerous health issues that leave me exhausted and in pain. These symptoms are extremely debilitating, and, as a result, I was unable to have a normal high school career; I was unable to get out of bed so getting to school was out of the question. I went from going to high school five days a week, taking honors, AP, and dual enrollment courses, and participating in my schools marching and concert band, to a defeated lump, too tired and in too much pain to leave the house. As a result, I had to take a majority of my high school courses online. I somehow managed to find the energy to leave the house once or twice a week to take my dual enrollment classes at the University of Delaware, but it was extremely tasking. One day of what most would consider normal, everyday activities would require at least three days of recovery. Despite the challenges, I did manage to graduate high school with twenty-seven college credits. I am getting treatment for my health issues and am currently taking a list of medication as long as my list of illnesses, but so far, nothing has really worked. Lyme disease and all the health issues that come with it are not easy to treat. It is a struggle, but I want to move on with my life. I am not the same person I was before I got sick, but I am sick and tired of letting my illness win; I want to get my life back on track.

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    • Kailyn, I really admire the strength you have. It must have been extremely difficult to cope with your illnesses, let alone continue trying to live life as usual. But even though you may have done things unconventionally, you accomplished so much- even more than a completely healthy person may have! I hope that you can take pride in your strength and perseverance, you certainly deserve to be proud of the person you are and all you have and are continuing to accomplish.

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  5. When I was seven years old, my grandmother moved in with my family and me after being diagnosed with Alzheimer’s Disease. Over the course of nine years, I witnessed the progression of her disease until her passing in November of 2016. In this time I saw how her memories and ability to function properly were able to deteriorate so naturally. My parents and other relatives did everything in their power to help her condition and she lived with us until we were unable to provide adequate care to her, when she then moved into a nursing home. This process was difficult, but we knew that it would be in her best interest.
    Witnessing this progression was a bittersweet experience for me; I hated to see my grandmother have to go through this ordeal, but this experience gave me a more grateful perspective on life and proved just how caring my family is for one another. Seeing how easily one’s life can change caused me to focus on the positives rather than the negatives in my life and also caused me to have a greater appreciation for those in my life who make my life as great as it is.
    As heartbreaking as this was, I will forever be grateful for how this experience has shaped me into the person I am today. I have learned that no matter how tough life can get, if you have people who care in your life, you will be able to get through anything.

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  6. Let me preface this by first saying that I have worked this summer leading up to my Freshman year as a full time EMT for a private ambulance company in Brockton Massachusetts. The bulk of my job consists of me taking people to and from their appointments throughout the day, and sometimes every once and awhile I get to go lights and siren to an emergency.
    Most of the people I come in contact with are those who are unfortunate enough to have end stage renal disease, and require dialysis to keep them alive. So these patients have failing kidneys and go to dialysis three times a week for four hours at a time to get the toxins filtered out of their blood. Do the math that’s a minimum of twelve hours a week hooked up to machines. The procedure keeps people alive long enough to hopefully get a transplant, but it takes its toll both mentally and physically.
    I have seen patients who no longer wish to do this seemingly never ending cycle of machines. I have seen people who have given up on their life, or what is left of it. I have had people tell me that they just want to die in peace. They want to go home and be amongst the things they know.
    When I was brand new I was appalled by this. I couldn’t understand why anyone would give up on life especially those who were younger. Then not too long ago it hit me. We picked up one of our dialysis regulars who’s name shall remain undisclosed for privacy reasons.
    The patient is a frail old man with arms and legs retracted into himself. He has a history of defecating himself frequently. His speech is one that is barely above a whisper, and always through gritted teeth. He weighs less than eighty pounds soaking wet. Just a decrepit human being looking like an island in the middle of his hospital bed.
    We arrived at his room at one of the many skilled nursing facilities in Brockton. We walked in and introduced ourselves like we always do. The patient began to swing at us with all the strength he could muster. His teeth clenched like always, but determination in his eyes. Me and my partner exchanged looks and we backed off. I went to fetch his nurse.
    The nurse had her face in a bowl of what appeared to be chilli. I told her of the patient’s weird behavior. Without looking at me she said that the patient had his health care proxy enacted and couldn’t make medical decisions for himself, and he must go to dialysis against his wishes.
    What struck me first about this was the normalcy of it. There was no remorse in her voice she was just going about her day. The second realization was the fact that people such as my patient could no longer make decisions for himself. See the purpose of a health care proxy is to make decisions for you when you are no longer able. The health care proxy should know what the patient wants in the event that this happens, which, clearly my patient’s did not.
    We loaded the patient in the ambulance and the patient kept fighting. I looked at him and just kept repeating how I was so sorry. He cried and I felt like doing the same.
    The man is in his nineties and even if he gets a kidney transplant and is able to return back to normal how much time does he really have left? The man lays in a bed staring at the ceiling and defecates himself throughout the day. What kind of quality of life is that? He is no longer the man that he was and has no quality of life so why is he forced to continue going to get the treatment that will keep him alive?
    The patient’s family.
    After this experience I have seen this time and time again. The patient’s family believes that somehow the patient is better off alive and suffering then dead and at peace. Maybe it’s because a religious purpose or simply because they are putting off the inevitable and the grieving process. Or maybe is it because it’s thought that all life is sacred? Regardless patients suffer against their wills.
    Some people need to have the opportunity to escape the suffering they have in this life. Life is full of unpredictable events that we can not control. I think that we as humans should have at least the choice to die or keep fighting. When you strip someone of that choice and make it for them what do they have left?
    The situation is difficult and we feel powerless to help the ones we love, sometimes we do everything we can to help them when we should be doing nothing. Let them escape with whatever dignity they have left
    I understand that this isn’t a popular point of view. This experience showed me that some people need to die, and there is nothing I can really do about it. Sometimes that doing nothing is the best kind of medicine, which, is really strange to try and get your head around.
    There is so much I can write about, and things I am still trying to figure out for myself. Thoughts and feelings that I can’t exactly put into words. Though I know this could be more eloquent I hope that it gives at least one person some food for thought, and I look forward to your feedback.

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  7. When I was sixteen my mom died from Scleroderma, at only forty-nine years old, and three days before my sisters birthday. Now, you probably have two thoughts going through your head, first, “Holy crap that’s terrible” and second, “What is Scleroderma?”. It makes sense if you don’t know what it is, because scleroderma is a disease that affects only around 300,000 people in the United States, equaling about 0.0009% which, as low of a percentage as it is, is still way too high. When my mom first started having symptoms, doctors were baffled for a while, they didn’t know what it was and when they finally figured out they told us there was nothing they could do. They didn’t know what causes the disease all they knew was that it was a death sentence, a timer ticking way too fast, fifteen years I was supposed to have with her and six is what I got. Six measly years with my best friend, my number one supporter, and the person who I would have gladly switched places with, and you know what, those years sucked. Those six years were filled with doctors visits and late nights spent silent in the living room with everyone afraid to say something because what can you say? My moms scleroderma shrunk her from the outside in, first her fingers and feet got swollen then bent so she couldn’t move them. Next her skin got so hard it was like leather and ulcers were showing up all over her body causing her so much pain constant and never ending that she lived with for six years and never once complained about to me or my sister. But I complained. I complained about how unfair it was and how nobody knew about it and how it seemed as if the doctors were doing nothing. And I will continue to complain about it because I want people to know about this disease. Because the more people know about it and talk about it, more research will get done to help families like mine. I read somewhere once to “Act as if everything depends on you” which I think is a very strong statement. So I will act, I will use my voice to spread the word about her disease, and I will create a donation page for the Scleroderma Foundation, and I will try to get as many voices to join mine as I can because I believe that Scleroderma sucks, and I believe that no family should ever be told there is nothing they can do.

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    • Dear Cheyenne, I’m sorry for your loss. Your mother sounds like a courageous person and I imagine she would be proud to know that you’re helping fight the disease today.

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  8. When I was thirteen my father was was diagnosed with stage four Non Hodgkin’s Lymphoma. Just as Eighth Grade was ending and I was preparing to enter high school, the news struck our family with great surprise. My mother was in Las Vegas at the time for a nursing convention, when suddenly my father was experiencing sharp pains in his abdomen. He left the house late at night to go to the emergency room, but never returned by the time morning came.
    The next morning my grandparents were sitting in my living room as I came down the stairs and told my sister and I that we were going to visit my father in the hospital. At this time, all we figured was that he had a kidney stone and was having trouble passing it. However, I had suspicion because my mother had left her trip to Las Vegas early to come home.
    When we arrived at the hospital and I was able to see my father, I couldn’t help to notice that his eyes were yellow and was told “Yellow eyes mean that they are jaundice because his kidney is having trouble passing the stone”. After our visit with my father, we headed home and the only way I was able to distract myself from not being with him was to begin researching jaundice. Ten minutes and three articles later, all I had discovered was that there was a link between jaundice and pancreatic cancer.
    My last two weeks of Eighth grade were upon me and my father was finally home after three nights at the hospital. However, he had not returned to work and would attend doctor visits every day. Along with my father, my mother, who is a nurse educator and also works in the emergency room as a nurse, would spend their days at appointments.
    As the days went on I only became more concerned as to what was going on. My growing suspicion was soon answered as my sister and I came home from school and noticed there was a message on the answering machine. Since my Mother and Father were at another appointment, we decided to play it. The machine beeped then said “Hello this is Roger Williams Cancer center calling to confirm Michaels appointment tomorrow at ten a.m…” Hoping it was a mistake I could only think back to the link between jaundice and pancreatic cancer. The thought of cancer in my family began to overwhelm me.
    Two days after hearing the message, my parents told my sister and I the news. This was the first time i’ve ever seen my father cry as he explained to us that he was diagnosed with pancreatic cancer. I layed in my bed that night bawling as I soon discovered the very low seven percent survival rate of pancreatic cancer.
    Treatment started for my father and was soon changed as doctors discovered that what they originally thought was pancreatic cancer, was just a tumor pressing on his pancreas. The diagnosis had changed to a very rare version of lymphoma in his spinal fluid. This illness was usually found in children and there were not really any cases where a man in his forties would have it. My father’s attitude toward the news was always positive as he constantly expressed that he was going to beat it and continue his life normally, even if he would be the first man to do so.
    After two years of chemotherapy, radiation, bone marrow transplants, surgeries and a completely altered life, my father was pronounced cancer free. What we experienced as a family completely opened our eyes on life and we all learned to cherish what you have and never take life for granted. I’m extremely grateful for modern medicine and the staff of doctors who were able to heal my father from his illness. The healthcare field has been my dream since my father was diagnosed and I look forward to helping many families in the future as I enter my first year as a Nursing major.

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  9. Ever just sit and wonder to yourself what happens when you die? Death is one of those subjects that you never get tired of talking about you know? It is so intriguing because nobody fully knows the truth about it and well, there’s only one way to really find out.
    I do not remember the first time I ever talked about the afterlife or who asked me about it, but I do know that I always respond with excitement since it is so interesting. Can you imagine one day being able to know what actually happens? In my opinion, it would be very cool to find out whether you just disappear forever or you take some other kind of life form in which you completely restart a new life. Sort of like a bad dream that you keep having over and over, but you have no control over it.
    It is truly astonishing too because in a day in life where all the information you need is found on the internet, it is kind of rare when the answer cannot be found. But the truth of death is one cannot find. There are many beliefs about it, but no true answer. Beliefs about death are all that exists right now and honestly, all there ever will exist to the living.
    The reason is that there is only one way to find the real truth behind all the controversy and different belief systems. Beliefs like that of the monks that say your soul’s conscience does not die, but your physical body does and your soul’s conscious takes another body after one’s physical death. And although I am very curious about it, the type of curious that gets children at a young age hurt, I can definitely wait to find out. Everything comes in its given time. Especially death and whatever happens next.

    P.S- I know this isn’t the same topic but I didn’t know where else to comment it.

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  10. First, understand, I never wanted to write about this. Not until now. You see, for six years of my life, I struggled with a problem I didn’t dare admit to. I couldn’t. For one thing, I felt guilty that it wasn’t a “real problem.” Not like sexual assault, disabilities, diseases, and so many others. Those. Those are important. My problem was subtle. It didn’t threaten my life, but, nonetheless, it was devastating.

    Trichotillomania. A strange-sounding word, right? Nothing ending in “mania” can be very good, after all, can it? Suffice to say, I hated the term. I also hated when my mother called me “psycho” because of my trouble managing this problem. Basically, I pulled out my hair for no apparent reason; and, like habits or addictions, it took all my willpower to stop.

    I couldn’t swim, braid my hair with friends, go outside without an hour of preparation, or even sit around doing nothing like a normal kid. I had debilitating anxiety over sleepovers, sports, dating, performing, going to the hairdresser, and—if you can imagine—windows. I was terrified of anything that might expose this secret I tried desperately to hide. My middle-school years were effectively ruined. The worst part was the lack of a proven cause. From my online searches, I learned of others with this condition, which apparently affects around 1 in 25 people, but I never met any…

    Then again, I’m sure they’re hiding as well as I did.

    I realize my story in itself is neither important nor unique—it’s one of thousands of recovery stories. I could lecture on and on about perseverance, struggle, and how my recovery is still a constant buzz in my mind, demanding vigilance. But, I believe it’s finally time I admitted this: This is my story. I realized that I shouldn’t have been ashamed of having this condition, but proud for eventually beating it. My problem might not have been what I was taught the “real problems” are, but it was a problem for me, and I know it’s a problem faced by someone else out there. Many people. People who may feel embarrassed and alone.

    Our culture is so focused on beauty that when we see an cartoon where a character pulls on their hair in stress or anger we don’t think much of it. We laugh. I laughed too. Little did I know there were people in the world who do a similar thing, without noticing, without stimulation, without feeling pain; they can’t help it. Little did I know I’d be one of them, until I had to learn how to stop.

    I believe it’s time I shared my story. I hope it helps somehow.

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    • I’m amazed that you had the courage and strength to share something so personal about yourself. I hope that it inspires others to do the same and not be ashamed of who they are no matter what it is. I’m glad you learned how to cope/live with your problem. I want you to know that just cause this problem didn’t threaten your life doesn’t mean it isn’t a big deal. It may not have been sexual assault, a disability or any diseases but it’s just as important if it affects any part of your life.

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  11. My belief wraps around to my own illness. As a kid I would go to family gatherings, most memorable is Christmas Eve where my family would all talk and eat together. We would laugh eat and not leave until two in the morning. I had a normal everyday life as a kid I played sports, went to school and overall had a boring uneventful life. Then fifth grade just after new years I was checked into the hospital and was diagnosed with diabetes. Devastated not knowing how different my life was going to be, thinking that everything would change. I would be forced to do a bunch of untrue and drastic things like never eat sugary sweets and stop playing sports. These were all wrong assumptions, but my main worry was about how others would treat me now that I had to monitor my blood sugar and take injections after every meal I ate. It was a mental struggle going back to school and not knowing what to think for the first year or so I was extremely self conscious and cut off most relationships with my friends due to my self doubt. Not until Christmas Eve of the next year when I went to see my family did I realize how normal I seem, and how I seem no different from anyone else. I remember walking into my cousins house of my Dad’s side of the family and my Dad saying, “Look at the next Diabetic in the family!” Little did I know all this time about a fourth of the relatives that I see (about 10-15) are actually diabetics and have been for the majority of their lives, and I had no idea.From that point on I returned to my normal life, stopped judging myself so poorly and ruining my own self esteem, just because I have a slight disability which never causes me any problems today. My belief is that no matter what illness you have your not so different from anyone else until you judge yourself as different.

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