Megan Marjorie

@megan_marjorie_the_life_of_me_smile_magee | contributor
I’m a writer, extrovert, Dog lover, incredibly artistic , life loving , unicorn enthusiast. Who just so happens to be living with Rare and Chronic Diseases I have Undifferentiated connective tissue disease, CVID, Glaucoma, Gastroparesis , Asthma, A long QT, IST , ITP, and have a history of DFSP ( a very rare kind of cancer) And is on a mission to prove that great pain , and great joy can coexist Follow me at “ The Life of Me Smile Magee “ on Facebook, Instagram, and YouTube to dive further into my story!

Reactions When Your Chronic Illness Is Shared Without Your Permission

It was the day my worst nightmare became my reality — and it was all thanks to an anger-filled teacher’s slip of the tongue. The whole cast of the musical revue — in which I was the only freshman girl — knew about my illness after this happened. The same chronic illness I’d spent a lifetime trying to hide. I outright quit the musical revue, and in a mix of shock and horror, I began the painful walk home. I’m glad I had my ever-loyal childhood best friend walking right by my side. With each step, I opened a new floodgate of tears. I thought my life was over. I thought the cast of the musical revue would never look at me the same, the secret I had tried so hard to hide would spread around the school like a virus, and I would never be the Megan I was before everyone knew about my illness. But do you know what happened? I got a phone call from an unknown number. When I answered the phone, the whole cast sang a song by P!nk: “Pretty, pretty please, don’t you ever, ever feel/Like you’re less than perfect/Pretty, pretty please, if you ever, ever feel like you’re nothing/You’re perfect to me…” I then heard screams of “We love you, Megan” shouted by countless people crammed into a tiny car. I could barely get out the words “thank you” because a river of tears started flowing through my eyes. My first smile of the night crept across my lips. As I hung up the phone, I just grabbed onto my childhood best friend and bawled — for an entirely new reason. The day I thought my life was over — the day my teacher shared my illness without my permission — I was met with love. There may be multiple times in our lives when we feel hopeless — like the pain will never end. It may feel like your world is ending — like maybe life isn’t even worth living. I know how it feels because it happened to me. On those dark days, though, you could find that you’ll be met with love. Even when you expect the worst is going to happen, the light can still shine through. When you think your life has ended, and your world has shattered beyond repair, people might remind you that you are loved and you are perfect. If you are facing your darkest night, and if you feel like the pain may not be worth your time, remember that the good may come. If you feel like the sorrow will never end, remember that the love may come. You just have to stick around long enough to see it.

How to Cope When Rare Disease Changes Your Life

When I was a little girl, most of my friends would daydream about their wedding or future kids. I would daydream about my future career and the diplomas I was going to receive. I was probably one of the only 10 year olds in the world talking with their dad having a major dilemma because I was pretty sure I wanted to get a minor in political science… but I couldn’t decide if I wanted to be a lawyer or a special education teacher… and I did know I wanted at least one master’s degree, but also maybe more. In every aspect but cleaning, I’ve always been a perfectionist. Having spent my whole life with chronic pain, I had a major “if it’s going to hurt, do it right, or why even bother doing it” mentality. I had near perfect grades (basically A’s in every subject but math, and the fact I could never get an A in math killed me). I had a clear plan of what my life was going to look like. Until the age of 14, when a life with moderate chronic pain was bombarded by a progressive, multi-systematic, ridiculously painful autoimmune condition no doctors could seem to figure out or even slow down. My perfect grades got overthrown by debilitating and life-threatening  symptoms. My stellar attendance got replaced by doctor’s appointments. My long-term goals, even extracurricular activities I loved, were shadowed and replaced by what seemed to be a never-ending list of limitations. That little middle schooler with near perfect grades ended up being so sick, I missed half of my senior and basically all of my junior year due to health. (The “senior pictures” of me in my high school yearbook nearly all feature a giant smile on my face and an IV in my arm.) I graduated high school by the skin of my teeth — I didn’t even know I was graduating until the Friday before graduation. Through that summer, I watched my friends prepare to move out on their own, prepare for college and prepare for the part of life I’ve fantasized and dreamed of since I was a kid. I would talk with them and try to share in their excitement, only to go home, lock myself in my room and bawl my eyes out, utterly hating myself for how jealous I was and how badly I wanted the opportunities so many of them seemed to take for granted. For years, whenever August hit and everyone would return to school, I would slump into a depression. Because every year — while my peers moved on — my health declined. I had to admit even working was an impossibility for me. I not only applied for but was granted disability, and every August that dream of an education that would lead to a dream job seemed to be more and more of an impossibility. It felt like August was a blaring reminder I was letting “Little Megan” down. I felt that by being sick, I’d never live a life she would be proud of. Until one day, while I wallowing in the self-pity that only August brought me, I stumbled across a quote that said, “With life, you can either roll with it, or get rolled on.” Something clicked. I can’t change my health. But I can change how I view it. I can either constantly get crushed and “rolled on” by the disappointment of what I thought I would accomplish and what I thought my life would be, or I can “roll with it” and create something beautiful out of what my life is now. So I began to fight all the negative things I thought my life was, and used that energy to find out what I can do. I began to focus on the positives in my life instead of the insurmountable negatives. I began accept the harsh realities of my situation, allowing  myself to have “bad health days” and even “bad health weeks” without feeling like a complete and utter failure. I’m even learning how to ask for help (with how stubborn I am it’s still a complete work in progress!). I now use that perfectionism as a driver to hopefully make my life something that can’t be pitied. And in return, I’ve stopped pitying myself. I’m still human and have times where I’m heartbroken about my failing health and current situation. Sometimes I still see friends headed to do their master’s programs, and a part of my heart still sighs in pain because I wish it was me experiencing that adventure. But I’ve come to the realization that sick or healthy, we all face earth-shattering disappointments sometimes. No one’s life turns exactly into the picture they had planned. But that doesn’t mean the picture we end up with — as different as it may be — won’t be prettier than the one we imagined.

The Sentence That Supported Me in the Hospital for Chronic Illness

When you live with a rare disease, small procedures can change into life-threatening calamities. Sadly in May, a routine surgery (well, as routine as a surgery can be during the COVID pandemic) to remove a large benign tumor in my thigh ended up deeply upsetting my undifferentiated connective tissue disease, leaving me waking up gasping for air in recovery because my body puffed up like a balloon. The worst of the swelling was my airways. They were swollen to the point of almost being shut, which started the dramatic saga of having to get re-intubated and waking up in the ICU on a ventilator. If you’re a caregiver looking for support, The Caregivers’ Corner group has your back. Join here. Remember this was all during the beginnings of the COVID pandemic, so I didn’t have a single family member or even an advocate who deeply knew my complex case by my side. It was just me, my team of doctors and for half a day, a notepad (as my only means of communication while I was intubated). I was in the ICU for about seven days and remember on a particularly emotionally hard day, I was talking with my religious studies teacher on the phone. He said six words I’ve never heard before. “I’m so happy you’re still here.” Tears filled my eyes. And not due to pain, frustration, sadness or fear like they had many times in that ICU room. But for an entirely different reason that I can only describe as gratitude. Those six words seemed to validate that even though I was exhausted in every sense of the word, lying in a bed, barely able to move, lying to my family and telling them I was fine when I wasn’t, and lonelier than I have ever been, I was exhausted because I was in the midst of a huge fight. And someone cared if I won. I didn’t know how desperately I needed that verbal reminder. That someone on the “outside” cared. That this fight mattered. And those six words would continue to carry me from nine days in the hospital, to recovery and for weeks after I came home from that hospital stay. Everything, literally everythin g, that could go wrong with my recovery did go wrong. And I found myself exhausted. More physically and emotionally drained than I have ever been. Wondering if this fight had a purpose. And honestly I got to a dark enough spot where I wondered if those I loved would be “better off without me.” In the midst of that recovery, still healing and learning how to walk without a potato sized tumor in my thigh with the help of my “gorgeous” red walker, I maneuvered my way to the infusion center to get my monthly IVIG. As I sat in the infusion chair getting the typical round of  health questions necessary before they pump you with an invasive treatment, I told the recent saga of my screwed up health to the tens of nurses who surrounded me. One of my favorite nurses, with shock and compassion brimming in her eyes, smiled at me and said, “I’m so happy you’re still here,” in a voice that let me knew she meant every word she said. And once again tears of gratitude filled my eyes. I never truly realized the importance of telling someone who is fighting for their life that you appreciate their existence. Believe it or not, after that infusion, I was sent to the ER because my medical team was scared I threw a blood clot in my knee. I was convinced that during that recovery, my body seemed to only follow “Murphy’s law” (what can go wrong will go wrong). When once again I was on a hospital bed… by myself (no visitors allowed), feeling like an absolute burden, trying to not drown in all the emotions being in a hospital after my ICU stay brought back, I held on to those six words. “I’m so happy you’re still here.” I held on to them like they were the only life preserver and I was stuck in a tsunami. I held on to them as I started counseling to deal with the PTSD from that hospital stay, and finally made my mental health through battling life-threatening illness a priority I held on to them when two months later, my pulmonologist said I needed daily supplemental oxygen and stared at my face in shock the first time I wore my nasal cannula in my home. I still hold on to those six words today. Because when you are dealing with chronic and or life-threatening illness, fighting for your life never gets easier. A part of you will feel like a burden with each admission, the co-pay of each appointment, test and medication. In every aspect your health declines, you will take time to mourn what you have lost and it will hurt those you love, and those you love will hurt to see you hurting. You will miss what you used to be able to do, what you used to dream about and who you used to be. On your worst days, you will wonder of death would be easier than all the pain you are feeling right now. (p.s. Life is worth every ounce of the pain.) And no amount of “positive thinking” will change those truths. Maybe even you, like me, will at times wonder if you are a burden to those you love. When those you love are just searching for a way for you to see yourself in their eyes. But those six words, “I’m so happy you are still here,” not only saved my life, but changed my life. I tell it to my friends who are struggling with mental or physical health. I tell it to myself. I use it as an acknowledgment that the fight is long and hard, but you have people cheering you on even when you don’t realize it. We all need the reminder that someone is happy that we continued and will continue to fight despite it all So to whoever is reading this, I’m so happy you’re still here.

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An Uncertain Future

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Seeing the Future With Curiosity, Not Hope With a Progressive Illness

“When it comes to the future, I mean it’s good to be hopeful, but you don’t even need to be hopeful. You just need to be curious and let that curiosity drive you into wanting to see what happens next.” When I was randomly scrolling through Instagram, I found this statement. Is it weird to say I found it extremely comforting? When you live with a progressive disease, having hope can be hard because science has proven your health will probably get worse. When you have a life-threatening condition, hope can also be difficult because your body may show you countless times that when it comes to some of the most important things — health and time — you may have no say in how much you have left. Having hope can be absolute torture when you live with a progressive chronic health condition because sometimes nothing is worse than letting yourself want what you know you can’t have. Lately, as my health has gotten worse and my dreams have grown bigger, hope has seemed like an impossibility. It’s reached the point where, when I was recently asked to write a letter that could never be sent to my younger self, my first thought was “Heck no!” I asked myself who in their right mind would fight as hard as I have to be in the life situation I’m currently in. But then I thought about holding on to curiosity about the future. What will happen? Will those dreams come true? What will I achieve? Who will my siblings become as they approach full-fledged adulthood? Who will these adorable nieces of mine turn out to be? Will I meet an amazing man or an incredible group of cats? Will — by what seems the smallest of odds — my health actually stabilize? That perspective felt more reasonable to me. It felt more possible, and it gave me a heck of a lot more hope than I’ve felt this whole month. It felt realistic . I’m not one who enters lotteries or who dreams too extravagantly. I’ve gambled once or twice for the experience, but I find myself having anxiety over what I could have spent with the money I’ve gambled instead of enjoying the gambling in general. Illness has turned me into a hardcore realist who doesn’t take chances. My perspective with my rare disease makes hope sometimes feel like a fantasy. But curiosity, on the other hand, feels like an unpredictable possibility — a “big, beautiful maybe.” So if you struggle with hope like I do and sometimes struggle with the strength to continue, try to hold onto curiosity, and let it propel you to whatever “big beautiful maybe” could come next.