What Dressing Up for Halloween Requires When You Have a Chronic Illness


Before I Was Sick

I always loved the idea of Halloween. Homemade costumes were a must. At first, our mother made our costumes, but the gauntlet was passed early on, and we sewed our own. I remember making a fairy costume for myself and the wings kept falling off. Well, you would have thought the world ended. I planted myself in the corner of the classroom, bawling my eyes out, as my classmates, eyebrows raised, cautiously stepped around my desk. It was almost the same as the times I tried to make a kite out of two-by-fours and garbage bags and was devastated when I couldn’t get them to fly. Yeah, math and engineering were a field I never would go into.

Now

woman dressed as a blue crayola crayon
Marlies wearing her crayon costume

The woman pictured above is me, two years ago, dressed as a crayon. I think that sentence was unnecessary, but I’m putting it in anyway. Now here’s where the “power performance” comes in. I had to conserve energy because I desperately wanted to be original and funny while trick-or-treating with my niece and nephew. I wanted it to be memorable for them. So I rummaged through my storage closet and found this outfit that I had made with my own two hands when I was in grade nine.

Rummaging through a storage closet causes me to sweat and become frustrated, so I had an hour nap on the floor. After that, I had to put on makeup and straighten my hair (about the second time I’d done that in that particular year). You can’t see it in this picture, but there was supposed to be an elastic running from the sides of pointed hat under my chin. I guess I’ve gotten considerably fatter since my days in grade nine. The elastic snapped. Another half hour break, sitting on the toilet, jamming the hat to my scalp with hairpins. Cried about it.

Engage

This is a relatively calm command derived from the “Star Trek” series. For me, it means something very different. When something of utmost importance must be done, I simply break through that mental barrier like a big, strong football player. I know nothing about football but I think it might be the linebacker? I don’t say, “Well, I might get hurt or be unconscious or get a headache or have to go to the hospital or urinate on myself.” No. I just do it. Because somebody else needs me and I said I’d be there for them and I love them. So I push and break glass and burn and pillage and plunder in my mind’s eye. I smiled, I made people laugh, protected my niece from a big scary dog, did not urinate on myself, and everybody remembered that day forever. Including myself.  I look back at that picture and it makes me smile.

When I got home, I needed to remove the costume and replace it with the pajamas I had been wearing all day prior to donning the crayon outfit. Makeup removal was out of the question. Enough nights and the pillowcase would take care of that for me. In my mind’s eye, I was no longer pushing and breaking things and pillaging and plundering. It was over. So I slipped into something even more comfortable for the next two days: a deep, deep sleep that was almost like a coma.

And that is how I power performed as a crayon on Halloween. Was it worth it? Absolutely.

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arm with iv needle in it

Why Taking Photos of Myself Helps Me Cope With My Illness


When’s the last time you took a selfie? Taking photos of ourselves is reflexive. We photograph medical procedures and fun moments with friends alike; we slap pictures on every account from Uber to Snapchat.

However, this is something I struggled with when I became seriously ill.

Oddly enough, my family took the first photo ever of me when I was sick. Among my childhood pictures, there are some images of me when I had scarlet fever. The first few are unremarkable; they’re simply photos of a kid doing her school play (Yes, I did a play while I had scarlet fever. Yes, the adults knew about it. I could probably write another article about that decision — needless to say, I should have been kept at home — but my mom had been given some bad information, the teachers didn’t turn me away, and since I was 7, it was not my call.

young girl lying in bed crying

In one image, however, I’m obviously sick. My lips are bright red, my eyes are barely open, and I appear to be crying. I don’t remember that specific moment — scarlet fever was a painful blur. I spent most of my time asleep, with my dog Cindy curled up at my side. It was less than a year after I’d had Rocky Mountain spotted fever, and I was secretly terrified that I’d land in the hospital again.

Why would someone in my family have taken a photo of me when I was half awake and in visible pain? I don’t know. I don’t even remember being photographed. However, it served a purpose: it truthfully documented a specific moment in time. It wasn’t a nice photo, but it was an honest one. At my school play, I’d done a very good job of pretending I was well. Here, the mask was off.

The image was quietly taken and put away. My mom didn’t put it on her desk at work; it wasn’t reproduced on the family Christmas card or framed for posterity. It didn’t even make it into the photo album; it was relegated to the box of extraneous pictures. I recovered from scarlet fever and life went on.

There were many more photos taken during my childhood; there were very few taken during my late teens and early 20s. Once it was left to me, I simply neglected to get photos of myself most of the time. I traveled the world and went through entire countries without ever taking a single photo of myself. There are, however, thousands of photos of buildings, works of art, neon signs, pets, landscapes and other people. I did a great job of documenting everyone and everything but Denise.

Eventually I realized I wanted to be included in the photographic record, too. I began pointing my phone at my face; putting my camera on auto-timer and scurrying over to get in the frame, and asking others to take photos for me. When my health took its drastic turn for the worse, however, I once again stopped photographing myself. This time, it was completely deliberate. When I did take a few pictures, there was so much backlash that I regretted it.

However, my friends kept taking pictures of everything — and that included me. And as I spent more time with them, I realized they were documenting honest moments in time, just as my family had when they took my scarlet fever photo. Being ill was part of my reality. All my photos didn’t have to be great. I had the right to evade the camera, but would I regret that later? I started taking selfies of myself and jumping in group photos again.

As time went on and I returned to my pre-illness comfort level with photographs, I discovered they served two new purposes for me:

Documentation: tracking healing of surgical sites, the progress of unusual features, or new problems that have physical manifestations. These photos and videos can be really helpful for my doctors if they show specific symptoms or problems.

Amusement: I have to wait for doctors on a regular basis, and I kill time by noting what’s in their exam rooms. I’ve become intrigued with the anatomy models that are often on the counters; I not only study them and play with the moving parts, but photograph myself with them for fun. They’re there for “patient education,” after all, and it’s hard to ignore big plastic brains and hearts when they’re right in front of you.

As a result, I have documentation of my continuing journey. Others may see it as narcissistic, or attention-seeking, or what have you. They don’t have to like it. As long as the images mean something to me, it’s all good.

Like my second-grade photo, most of these images never see the light of day. I ensure that nothing is uploaded to the cloud. Every now and then I do share one of the amusing anatomy model photos to a very select audience on social media, but I’m not yet comfortable enough to post the “real” medical images, for the most part. When I do choose to share one, it’s on a very tight filter. Most of my friends on social media only see me smiling.

Take the photo. It’s what I continually tell myself. I can always delete something if I really don’t like it; I can always choose not to share. However, if I’ve never taken the photo to begin with, my choices are gone.

So I take the photos. I document myself when I’m crying, when I’m in pain, when I’m in stark doctors’ offices. I let my cameras capture the surgical suites and surgical sites on my body and the sunlight in the hallway of the medical building; I document progress and regression. I might never share 99 percent of these pictures, but I have a record of where I’ve been. It’s not always pretty; it’s not always nice. But it’s there.

Hand drawn women with an earring made of silver and ruby

The Assumptions People Make About My Illness Because I Focus on the Positives


My family brought me up on values that taught me to always find the silver inning. So naturally, when I tell people about my condition I choose not to focus on the 28 surgeries or the catheters I have to carry around in my bag. I pull the silver lining out of the situation and make jokes about my illness or make jokes about how I pee standing up or how during any long road trip I never have to stop to pee anymore because I’m connected to a bag. This creates two big assumptions:

1. They think it’s easy to live with a Mitrofanoff or an augmented bladder. They wish they could pee out of a tube for convenience.

Yes, using a catheter has its conveniences, and yes it has worked to better my life. But don’t think for a second that I would choose this form of urination over the way most of the human population does it. Don’t think that I enjoy sticking a tube in my belly button four times a day to pee. Don’t think that all my hospital stays are full of fun and games because I never look sick around you. I know how to handle my situation and illness and just because I do, don’t think that it doesn’t suck.

2. “Your life is so good, don’t be depressed! You have survived this far!”

I roll my eyes at almost every comment like this. I have come this far and I’m thankful for it, but I’m going to need some anti-depressants and anti-anxiety medications to help me along the way. I’ve missed out on a lot of life and family events because of my illness — a family wedding, my 16th birthday, my first semester as a sophomore in high school. And with every surgery or long hospital stay comes an anniversary that makes its way around every year. These anniversaries come with tears, panic attacks, and sleepless nights. I’m happy I’m still on Earth, but I struggle with the challenges I face to stay here.

I think it’s important to remember that there is purpose behind everyone’s words — maybe a purpose you didn’t mean to convey but is seen when told to someone with a chronic illness. “Don’t be depressed;” sure I try, but it’s not always that easy. People with chronic illnesses have been and will be living with this for the rest of their life. So maybe instead, skip the jealousy remarks and the depression pick-me-ups because it’s old. I’ve heard them all. How about we talk about things that aren’t going on with my illness? Instead of telling me not to be depressed, how about we do something to take our minds off the pressing problem of my illness? Depression doesn’t stop when you tell someone to be happy. It doesn’t work like that and it doesn’t help. It helps when we crack smiles and hear our laughter filling the hospital corridors.

Please don’t be jealous — you don’t have a whole lot to be jealous about. OK, I might pee in a cool way but it took a lot to get here. My veins are shot it takes six times to get an IV in. I have a large cross that runs up my abdomen and only recently did I become comfortable wearing bikinis. My therapist told me she believes if I didn’t have all the medical traumas I did, I wouldn’t have anxiety and depression. 

So next time I see you, I’ll show you my cool pee trick, but please remember that you’re lucky you don’t have to live with it, or the repercussions it took to get here. 

Beautiful abstract dramatic girl with long red hair vector

When My Chronic Illnesses Make Me Feel Like It's Always My Fault


I began getting sick when I was only 11. I was thrown into a world I didn’t understand, a world that was completely opposite from my hustle-and-bustle life of being a healthy competitive dancer. The way I identified myself was by the people I was around: I am a daughter, a sister, a dancer, a friend, a cousin, a niece, a student, and all of a sudden I was a patient. When the world around me was changing and spinning in circles I made the choice to hold onto the people around me for stability. My family and my friends became my life. I quickly developed the idea that my happiness and stability were within the people I chose to surround myself by because I couldn’t find that happiness and stability in myself. I didn’t know it yet, but that was the beginning of depression slowly twisting its way into my every thought.

When I called my best friend and didn’t get a reply, I thought nothing of it. When I called a second time, I started to get nervous. When my text messages went unanswered for days, then weeks, and my pleas for a movie night, or a hospital visit were met with rejection… I blamed myself. But somehow, someway I moved forward, I found a new group of friends in high school and convinced myself I belonged. I was so desperate to belong that I convinced myself I did. I made excuses every time my calls went unanswered or my heartbreak wasn’t mended. I convinced myself that when I really and truly needed them, they would be there. Then they weren’t.

This has become a cycle in my life. I convince myself I can confide in someone, I trust them with my all, I love them unconditionally and then it all turns to dust. This breach of trust has turned me into a chaotic mess of paranoia and guilt. I panic when I notice distance. Even when it’s not intentional, I panic. I apologize profusely even when I’m not sure what I could have done. I do things out of my comfort zone to keep the company that I crave and the people I love in my life. Each time someone leaves, my depression wins and it grows. At least once a day, every day I fall into a panic attack that involves self ridicule. “How can you let this happen again, Sabrina? Why can’t you keep a friend? What are you doing wrong? What is wrong with you?” Then follows the should-haves: “You should have gone out more. You shouldn’t have said no to their invites. You shouldn’t have told them you were sick. You should have been able to hide that. You should have been a better friend. You shouldn’t have talked about your struggles so much. You shouldn’t have let them in. You should be better.” 

More often than not I believe that voice, I believe the reality that my depression has created and caused me to believe. More often than not I believe I am not worth loving or being around. More often than not I convince myself I’m better off alone. More often than not I believe this is all my fault, that I am a failure.

But I’m not. I am not any of those things, and neither are you. I can’t help the genetic disease that has slowed my body down, I can’t help the disease that makes me allergic to the things this world is built upon, I can’t help the hypersensitive nerves that cause me excruciating pain, I can’t help that my immune system is too low to be around people. I can’t help any of those things but I can help myself realize that I am worth loving.

I strongly believe in this life there is a season for everything, including the people I am around. With each person who leaves me, or doubts me, or loves me I learn and I grow. I become more aware of the things I deserve and the things that I appreciate. I become more aware of the people I want to be surrounded by, and the people who I’m not meant to be surrounded by. So the next time I find myself questioning my worth or blaming myself for another loss I will remember this is just another season of life coming to pass. I will remind myself that when we are immersed in darkness we will become more aware and appreciative of the light, but most importantly I will remember that it is OK to find that light within myself and not others.

I hope you will too.

Follow this journey on #SimplySabrina.

Image via Thinkstock.

We Shouldn't Have to Experience Each Other's Pain to Be Supportive


As a child we imagine how our life will be when we grow up. We have our visions, dreams, hopes, and goals. We are determined to make something of ourselves. Determined to not let the ugly parts of life’s experiences stifle us. Determined to be more than the scars on our skin. Determined to be bigger than our fears. But then sometimes life happens in a way we weren’t prepared to handle. Whether it happened at such a young age that you really can’t ever get over it, or as you grew you faced different experiences that shaped your inner person, these experiences may have shaped you  for good as you were determined to not repeat the cycle.

But there are some experiences that, no matter how far you think you’ve run away from them, you turn around to see the shadows of the past lurking right behind you. Sometimes you’ve been so strong for so long that when you finally let your guard down to the raw and real emotions that you’ve ignored for so long, you find yourself completely weak and now shaken by the reality of what life has done to you. Suddenly you don’t recognize yourself anymore. What happened to the person you fought for years to be? No one told you facing your demons head-on would be so hard. That’s because they aren’t their demons. They simply don’t know how it feels.

There are those who think they have the slightest understanding of how you feel. They imagine themselves in your shoes and think they could do it better. They would be stronger, they wouldn’t break. But they don’t feel your frayed edges coming undone. They wouldn’t complain, but they don’t know how long you’ve been silently strong for. They only see the outside that you’ve allowed them to see when there is so much more below the surface that they can’t see. They have no idea how long you’ve suppressed these emotions that have left you numb for half your life. Now that you’ve decided to feel all the feels you’ve been shaken to your core. No, they can’t understand it, it’s not their emotions to feel. Whatever happened to you is your experience alone and until it happens to them, they won’t ever understand it and you have to be OK with that. Look away, refocus your thoughts, take a break, take a deep breath, whatever you have to do be OK with others not getting it.

arm with words till it happens to you written in black ink

Whether you are struggling with emotional anguish, mental illness, chronic illness, or trying to heal from trauma of the past, if they aren’t wearing your shoes, they aren’t going to understand the blisters those shoes have caused. And you don’t want them to feel the pain from those same blisters, so it’s really OK that they aren’t in your shoes. Their shoes are probably tight enough and you just can’t see it. As I’ve walked along this road showing my bruises from the past, I have come to learn that even I can’t understand what someone else’s pain is like. I thought I could relate to them on a level not many could. But in the end, their pain is theirs alone and not mine. I can try with all my might to understand how they feel, but in the end I may only understand a fraction of how they feel. And even if I think their situation is worse than mine, or vice versa, really what does that even mean? It means nothing. It means my pain hurts just as bad as their pain hurts them. In the end, instead of comparing our pain and experiences in life as worse or better than one another, why not put that aside and just be there for each other?

The last few weeks have proved to be eye-opening to me in ways that words cannot properly describe. I thought emotional pain would break me. I questioned how would it be possible for me to continue to be strong enough for someone else. I nearly cracked. I envisioned my body like a weak tree that’s died from a harsh winter. How much force could I withstand before I fell to pieces? I shed more tears behind closed doors than anyone could possibly know. Then I realized my pain will always be there until it isn’t anymore. So until then, I will have to feel it. Embrace it. Accept it. But I will put it aside for the needs of others when they need me. And when they don’t need me anymore I’ll allow myself to feel what I need to at that point. But I am not perfect and I am going to waiver. I may crumble despite my good intentions. So if that happens, I hope you will just support me, love me, guide me. Not judge me. Not tell me I need to be stronger, as I’ve been so strong for so long. If I have given all I have left, don’t assume you would have more. I’m not selfish if I’ve poured myself empty and can’t pour anymore out.

No, I don’t want you to wear my shoes. Let’s just find a way to stop judging, put assumptions aside and simply be there for one another.

On the Days I Hate My 'Faulty' Body, I Remember This


Our bodies are magnificent machines — they protect us and allow us to live. OK, your body may be faulty like mine and you may be having a rough time with all of your symptoms. But never forget that your body is still keeping you alive on this earth. It is fighting just like you are and it will always be there for you through thick and thin. You may wish it was healthy and fully functioning, but at this moment in time it is not giving up on you. It won’t desert you like people you have known in the past. It may never talk back, but it acts back every day. It gives you warning signs when things aren’t right. It gives you slight nudges to protect you and keep you safe. Every day it is trying to prove to you that it is worth keeping around and that it is your friend. At the end of the day, it is struggling, too, but it won’t give up yet. Giving up means you will no longer be alive and you won’t be able to live the life you dreamed of.

The symptoms you experience, like nausea and headaches, to you may be negative and a burden. But what if these symptoms are also a warning sign or nudge from you body telling you to stop, rest and relax?

Since my diagnosis I have hated my body with a vengeance, but then through time I started to accept that I am stuck with my body. Through research I have learned what my body does for me before, during and after a faint. Above all else I realized how grateful I am that even though my body is faulty, it is fighting every day to give me life. I am not going to give up on it, but join in unison with it and live my life to the max.

When my body gives me a symptom I stop, listen, evaluate, and then I act. If a headache comes on suddenly, I drink a glass or two of water thinking that I may be dehydrated. If that doesn’t work I go to plan B; maybe it’s my depression so I have a few pieces of dark chocolate. Then I go to plan C — I check my blood pressure and if it’s low, I drink a strong black coffee and have something salty. And if that doesn’t work then just maybe the headache is my body’s way of telling me that I am stressed and I need to relax. So I meditate, listen to some music and read a book and make sure I go to bed early. If I don’t take care of my body when it signals for help, then I won’t be able to manage in the long run.

This is the way I see myself, my body and the situation that I am in now. I don’t hate my body anymore. I do on a bad day — I resent it and feel sad. But I get myself together and I carry on fighting because I am stubborn and I am a fighter. At the end of the day I want to carry on existing because I want a life to be proud of. So next time you feel hatred for your body, just remember that it’s fighting for you, not against you. Maybe you need to fight in unison with it and live a life you’re proud of, too.

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