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When Chronic Illness Closes the Chapter on the Life You Planned

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Never in a million years did I think I would be writing this. So please bear with me as my thoughts are still scattered and torn apart. While my world is starting a new chapter, I’m still a page or two behind.

girl lying in hospital bed with man standing next to the bed

September 7 was the day my life turned took a 180 without a warning. I was going in to the Mayo Clinic to get an ablation, when they told me I had arrhythmogenic right ventricular cardiomyopathy (ARVC). ARVC restricts me from being who I want to be. It restrains me from participating in sports, which is all I’ve ever know. It restricts me from getting my heart rate too high, or I could die. ARVC usually goes unknown, until it kills.

I didn’t think that having this surgery to implant my implantable cardioverter-defibrillator (ICD) would change me. I figured it would be something I would just get over with time. But people look at me like I’m made of glass. Please dance around me like they’re scared I’m going to break if they get too close. Even my family members think that talking about my condition will cause me to shut down and never wake back up. Yes, it’s a sensitive topic, but I just want to be normal. I want to be the normal Victoria. The girl whose life revolved around late night practices and early morning tournaments. But I need to accept that that chapter of my life needs to be closed and I need to move on.

The hardest part of all of this is that I’m not ready to move on. If I’m going to be honest, I’m still in denial about it all. In my mind there’s still a part of me that believes, hopes and prays that there will be some miracle and I’ll be back to my normal ways. But deep in the pit of my stomach I know I’ll never get to feel the rush of adrenaline that comes with a tip off. I know I’ll never get to feel the excitement of waiting for the first serve to come my way. I’ll never get to feel the rush of sitting in the blocks, hands shaking and heart racing, waiting for the starting gun to send me off. I’ll never get to feel the happiness and joy that softball brings me. No more home runs, no more diving catches, no more happiness that comes with being with my friends while playing the game I love. I’ve never felt a pain like this. It feels as though I’m losing a loved one. Sports gave me a purpose that I can’t find anywhere else.

I can lie to my mind about being able to play, but as soon as I look in the mirror, I see my scar. I see the outline of my ICD. I see my future being put into my machine, and being stitched up, never allowing me to access it again. When I see my scar, I see all my surgeries and all my procedures. I see my disease; ARVC. I look at my scar and I see the future I could have had, the future I dreamed, the future I planned for.

My plan always had some sort of softball involved. Whether it was playing, coaching, or being able to teach my little girl all I knew about the sport, softball was always going to be in my life. But I can hardly make it through a game without crying. People say time heals everything, which is somewhat true. In three weeks my scar healed. In four weeks I was able to get dressed, shower, and use the bathroom on my own. In six weeks I was able to lift again. In six weeks I was able to raise my arm. But I don’t think there will ever be a time when I’ll be able to touch a softball, volleyball, or basketball again without feeling sick to my stomach, without feeling anger, sadness.

I don’t even know who I’m angry about. Should I be angry at my family? My doctor? Myself? God? At this rate I don’t know what or who I believe in. Most of the time I’m angry at myself for going into the hospital that night. Part of me is angry that I wasn’t strong enough to get rid of it on my own.

Most days I just question everything. Why me? Why not someone else? Why is it so deadly? Why hasn’t anyone come up with a cure? Why did I have to feel them? Why can’t I catch a break? When is it my turn to be happy? It’s funny actually. Most of the questions I have, don’t have answers, and the ones that do, aren’t the answers I want to hear.

One of my biggest flaws right now are all the lies I tell. I lie to myself, my friends, family, peers. I lie to myself that one day I’ll come back to play. I lie to my peers when I laugh along with them, pretending that I’m happy. I lie to my closest friends when I tell them I’m OK. I tell them that I’m not hurting. I tell them I’m going to be all right, I don’t know yet if that’s a lie, but it feels like a lie right now. I lie to my family when I sit down for supper and tell them how great my day was, when I tell them I’ll get through this. 

collage of photos of st mary's college, girl in hospital gown and scar on chest

Some days are better than others. The days when I’m able to keep my mind off what’s going on in my life, are my good days. The days I’m surrounded by friends, and the days when my mind is too busy to focus on all the bad things going on. The good days are treats to me. I never expect them to happen. On the good days I’m so damn happy and carefree. The good days are the days that motivate me to keep going.

And then there are the bad days. The days where I can’t see past the next day. These days are the days where I don’t even feel like getting out of bed and facing the world, out of fear that I’m not good enough for it. Out of fear that it will chew me up and spit me out, making me feel even lower about myself.

My biggest fear is that I won’t get better. I honestly fear that I won’t ever be mentally “healthy.” A big part of me is excited and thrilled for what the future holds. A good job, an amazing husband, wonderful kids. But then I wonder if I’ll even make it that far. Everyone tells me I’ll get better with time. But how in the hell do they know? They don’t know the pain I’m feeling. They don’t shed the amount of tears I do every night. They don’t have to look in the mirror every morning and see the scar that hurt them. I do.

For anyone reading this, go home and hug the ones you love. You honestly never know what’s going on mentally for them. No one knows or understand the pain I feel because I don’t share it. You never know what anyone may be feeling in their darkest hours. You never know when someone is in a period of weakness, a period of time where they don’t function normally, a period of time where they’re not themselves.

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Originally published: November 15, 2016
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