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Understanding the Past and Moving Forward: From Masked to Unmasked

When people think of me now, they think of my baking, my love for travel and language, my education and absurd addiction to studying. Most of my friends now see me exclusively as that person. But even just four years ago I was a very different person.

Part of the reason I am taking a gap semester right now is because there are a lot of things from my past that need wrapping up–that need consideration and closure. So I typically don’t talk to people about the real reasons why I am taking this short break from school–because it would be a long story since most of my current friends don’t really know about my past.

That sounds so ominous, doesn’t it?

I have talked a little bit about my childhood before–particularly when I was in Japan last summer–but I really want to bring it up again here. Partially because May begins Lyme’s Disease Awareness Month and I will be too busy flitting around France to post anything timely or organized, and partially because I have recently been facing an internal struggle as to how much I want to share with the people around me.

I can’t even begin to say how much I adore my friends now seeing me as me, and not a sick version of me. It is amazing that the people around me don’t guess or assume that I spent 2/3’s of my life with a chronic disease. But at the same time it is incredibly strange for me. I mean, that was 2/3’s of my life! That time, those experiences, made me who I am today.

Not to brag, but what I have done in the past three years alone is enough to make any normal person satisfied and happy and proud of their life–and I sometimes I wish I got more recognition for having gotten to the point where I am living a life that even normal people who haven’t had a chronic illness are jealous of.

Six years ago when I first started treatment for Lyme’s Disease, after eleven years of going undiagnosed and misdiagnosed, I was so sick from the disease, the medicine, and my absolutely paralyzing anxiety that I didn’t leave my house for two months. In months of treatment to come, I would consider a week successful if I put on real clothes and left the house once a week–even if it was just to a local coffee shop or to my cousin’s house.

Most nights I would read fantasy books while simultaneously watching TV until I couldn’t possibly stay awake any longer, because if I actually thought about my life I would cry myself to sleep and sink into an even deeper state of panic and depression. Most nights I went to sleep thinking I probably wouldn’t wake up in the morning. And most mornings I woke up with relief and dread of having to get through yet another day.

At this point I basically had three friends–all friends from my early childhood whose families were friends with my family. Even spending time with them was highly anxiety producing, and it wasn’t until nearly a year into my treatment that I felt even the tiniest stirring of desire to hang out with any one of them. There is a gap from my freshman year of high school to the end of my junior year of high school where I didn’t hang out with anyone, there are basically no pictures of me from that time, and my entire universe revolved around my illness and getting through each day.

Even in my senior year, I was so anxious about taking the ACT–not because of the content but because it meant sitting in a room full of strangers for several hours in a place that was unfamiliar to me–that I cried and had anxiety attacks for weeks before it happened. The first time I went out with friends to dinner without any other random family members present–the first time I had been in a car with a peer driving–was only one month before university started.

So imagine going from that chronically ill, isolated, anxious, depressed teenage girl to a girl who lived in Japan for six months, who has traveled outside the country seven times in the last three years, who has been the president of two clubs and a member of several others at her university, who has made so many friends that when she travels she basically needs a suitcase for all the souvenirs she brings back.

It is a huge change for me, and it is one that sometimes is hard for me to wrap my head around, and sometimes I need to sit and contemplate everything in order to process everything that has happened. It also means that any time I get even a small cold or feel a headache coming on I have extreme anxiety–because to me one moment of sickness really can lead to a life changing twelve year journey of illness and pain. So even though I am so much better now than I used to be, it is actually incredibly hard to work through certain experiences. And knowing you have PTSD and anxiety is very different from being able to cope with feeling such emotions in times of stress.

I’m hoping that in sharing this I will be able to feel a little bit more acceptance and closure towards everything that happened pre-university. As I said before, I am so happy that people don’t know that I was sick. But sometimes I want people to understand my entire journey in order to understand who I really am today.

You might have also noticed the tag line to this post, which is related to the title of my blog. I get a lot of questions about it and I think this is the perfect time to share. I have always loved writing, and around my middle school/early high school years I decided that I wanted to write a book. I wanted to tell the world about my experiences and how those experiences have shaped who I am. I wanted to be an inspiration for people who are in the midst of a chronic illness themselves.

And I decided that the name of my book would be Masked. The title just popped into my head one day and it never left–it was always a present thought somewhere in some corner of my mind. Because that was how I felt–I felt covered up and I felt like the real me was hiding behind a facade of sickness and forced, unfelt smiles.

So when my life took a positive change for once and I started having more and more “real life” and “normal” –even extraordinary–experiences, I felt like I had been unmasked. For the first time in forever I felt like the world was seeing who I really was and that I was allowed to be myself. So I named my blog Unmasked Adventures to signify that this was a safe space for me to embrace who I am in every aspect of life that I find myself adventuring in–whether that is in the kitchen, in another country, or even just in my mind.

I would like to end by sharing a poem by a woman named Michelle Holderman. I first came across the poem last year during Lyme Disease Awareness Month and the message really hit home for me. I think she does a fantastic job of verbalizing what it is like to have a chronic illness, so instead of trying to find my own words I shall borrow hers:

I know you.

I know how sick you are. I know how hard it is. I know the crazy roller coaster ride you’re on. I know how getting out of bed is more than you have energy for on many days. I know you push yourself to do even the simplest of things.

I know you’re investing everything you have, and even some of what you don’t, to get well, feel better and take your life back. I know you never imagined it would be like this. I know the obstacles seem insurmountable. I know people don’t understand.

I know the frustration of not being heard; of being dismissed, overlooked and misunderstood. I know the frustration and discouragement of doing everything right and still seeing little to no improvement. I know the ups and downs. I know the heartbreak and disappointment you’ve felt. I know the struggle. I know the mess.

I believe you.

I believe what you say. I believe the unbelievable things you’ve been experiencing in your body. I believe how surreal it all is. I believe how very hard you work to get well. I believe how much you try to balance everything. I believe you try to be strong for your loved ones.

I believe you’re caring, competent and capable. I believe your ability to persevere through such extreme hardship speaks volumes about who you are. I believe you inspire others. I believe you are making a difference. I believe your story matters. I believe you will overcome this.

I feel you.

I feel your inner struggle. I feel the burden you carry. I feel the aching and longing for change; for something lasting and better. I feel the deep seated determination you have to see this thing through.

I feel the utter disbelief and outrage at the ignorance and insensitivity within certain aspects of the medical community. I feel your growing desire to escape it. I feel your drive to educate them. I feel your compassion and empathy for others who are also sick, in pain and struggling with their own circumstances.

I understand you.

I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you’ve lost so much along the way. I understand not everybody can see it.

I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.

I understand the need for retreat. I understand how you want to get away but can’t. I understand the times you need to be alone. I understand your silence. I do.

I understand the need for total diversion. I understand how getting out is not necessarily about physically feeling better but about doing something just for you. I understand your desire for simple joys.

I see you.

I see your true colors. I see what you go through. I see your resiliency. I see your courage. I see the love you lavish on other people.

I see the hopes and dreams and wishes you still carry in your heart. I see the depth of wisdom and knowledge you’ve gleaned through the many long years of suffering. I see how you willingly share it.

I see how you take the time to listen to others, even when you aren’t feeling well yourself. I see that you’re going through more than anybody else really knows. I see that you’re hurting.

I see how easy it would be to give up. I see how you’ve held on. I see how you’ve stood your ground. I see the deep faith that sustains you. I see, though your body is weary, just how very strong you really are.

I hear you.

I hear your cries. I hear those held back tears you shed when no one else is around. I hear your heartfelt and gut wrenching prayers. I hear your prayers for others; how you ask God to help them hold on too.

I hear your words of support and encouragement. I hear you cheering others on. I hear how you rejoice in another’s health victory; how it’s really a victory for all of us.

Though buried beneath the exhaustion of illness at times, I still hear your passion for life. I hear the inner hope with which you speak. I hear your unique expression. I hear the truth of who you are.

And you are beautiful!

I love you, friends. You are not alone.

———————————————————————————————————–

Thank you to everyone who read this incredibly long and perhaps too personal story about my life! Come back soon for more upbeat adventures! ^_^

4 Comments

  1. Emily Snodgrass says

    Maddie,

    I know this is comment is coming somewhat out of nowhere, but I couldn’t not post it after reading this. It seems like middle school was ages ago, and I’m sure we’re both very different people than we were then, but I still think about how much your friendship meant during those years- someone who loves books as much as me was a rare find. So when high school came, and we went to different schools, I think I chalked up our loss of contact to the typical “eagan vs. Eastview” drift. I had no idea that you were going through something so much heavier. I wanted to apologize for not working harder and seeing what was really going on back then- I feel like I left you in a lurch when I could’ve been there to at least talk about our new favorite book obsession. I’m so happy that you’re doing so well now, and reading your adventures is somewhat of a guilty pleasure of mine (thank god you’re not too close though because I would inhale the stuff you bake at a pace that would be horrifying). Anyways, this is getting very long and rambly, but I just wanted to let you know how happy I am for you, and that I’m sorry we drifted apart right as the most difficult part of your life began. Please continue to have amazing adventures and post pictures of the things you create, because it’s very clearly your gift. Can’t wait to read more!

    -Emily

    • Thank you so much Emily! 🙂 It means a lot to me to hear you say this, and I too always did and always will value our middle school friendship! Thanks for reading!! And keep in touch!

  2. Swarna Gupta says

    You are a staggeringly brave,intelligent and capable girl..
    I look forward to reading about all your amazing adventures:)
    Hope it’s a long and fun ride:)X

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