Timeline for a Tragedy

Timeline for a Tragedy

As the shocking news of the Boston Marathon bombing filtered through social media, so did the criticisms for those who continued tweeting and blogging as if nothing had happened. Some were outraged at the insensitivities, while others were ready to give the benefit of the doubt. Maybe they haven’t heard the news? But soon it was inescapable. Everyone on social media must have head about it, and while many people were struck with the urge to go hug their brothers, unplug from the internet, and take time out to just enjoy being alive, there were countless other people who had to return to work. They wondered when it would again become appropriate to tweet about the mundane sales their shop was offering, or share photos promoting their recent blog post. For those who were close to the tragedy, whether they were Bostonians, marathon runners, or they were actually there when it happened, the readiness to return to normal activities might take a long time to happen. Perhaps things will never seem the same, though gradually a sense of normalcy might return, and it happens at different times for different people.

Those who have lost loved ones in senseless tragedies like the Boston Marathon bombing and the Sandy Hook shootings will always look at the world differently, and will struggle with anger or impatience for people who chronically complain about the silly things, or #firstworldproblems, like a sniffly nose or a husband’s lack of interest in closing cabinet doors after opening them. While I haven’t been closely involved in a tragedy, I have been diagnosed with cancer and struggle with the same disconnect from the otherwise healthy and blessed community I’m surrounded by. Sniffly noses and lazy husbands? My reaction is usually not empathetic. I usually think that one should be grateful for the breath that sniffs a runny nose and for the fact that a husband is still around to forget about closing cupboard doors. But if I’m honest with my feelings, this judgmental attitude isn’t a more evolved way of looking at life. It’s a peculiar mix of a gratefulness for life and a jealousy for those whose problems are smaller than my own. I’m quite certain, though, that anyone who goes through hard times, or witnesses them via the media, has probably experienced similar feelings.

There seems to be an unknown timeline for tragedies. The public is expected to limit and consider what they say on Twitter or Facebook in the light of horrific events. Maybe they should stay silent and disconnect from social media altogether. But for how long? How long do you disconnect from the day-to-day activities that had been a part of your everyday life? And how long do you look at the world with a different perspective forced upon you by an unexpected act of violence or a terrifying medical diagnosis? The answer is different for everyone. For some people it’s just a brief moment. For others, it may be the rest of their lives. We all have a different timeline, and I’m still trying to figure out my own.

Do you remember how you felt when you read about the Boston Marathon bombing, and then scrolled through Twitter to see people still complaining about being stuck in traffic or posting ridiculous selfies taken in their bathroom mirror? Did it strike you as disrespectful and trite? When did you decide that it was okay for people to start sharing the parts of their lives that had seemed insignificant after the tragedy had struck? There are people in parts of the world that experience tragedy every day. When do they decide it’s appropriate to enjoy and partake in the meaningless details of life after their child dies, or a neighbor is shot down in the street? Should we all live our lives every day in awareness of the fragility of life, or would it cripple our ability to enjoy it? These are all the questions that many Americans were contemplating after the bombing, and they’re questions I’ve been grappling with ever since I prepared for my surgery in March.

I have been given a new perspective on life, only it hasn’t faded away with media coverage. If I forget for a moment that I have cancer, I’m reminded when I wake up in the morning and drive an hour for my radiation therapy. Or maybe I’m reminded when I glance at my mounting hospital bills, or see a missed call from the hospital. How do I continue living my life, washing the dishes, taking out the trash, and tweeting about shoes, when I’m now aware, 24-7, of the fragility of my life and the urgency to hold close my family and friends? When do I start regularly blogging again? When will I even care about regularly blogging again? I’ve been considering the timeline for my own little tragedy. I have been keeping an upbeat spirit, but have yet to figure out how to reconcile my new perspective on life with the realities of my life as it was before my health problems arose. I do enjoy doing crafts. I really love sharing fashion insights. Sure, those are meaningless things, but they add some excitement and joy to my life, so I’ll definitely be indulging in them once again. But at the same time, I have gained a fresh perspective on life in general, and I certainly feel it permeating every aspect of my mind and body’s activities. I’d like to do more with this space than just adding to the clutter of the internet. So now I just need to figure out how my own personal timeline will unfold.

The C Word

Andrew Junge, Pandora’s Box #13, 2009

Last night I had a dream, and when I woke up, I remembered it vividly. I was accurately telling someone, “Only 1 in 100,000 people have this kind of tumor, and only 5% of them are malignant. So what are the odds that my tumor is malignant? Miniscule. But mine is. And so I can only believe that I am going through this for a reason.”

On Monday I got the stitches out from my Paraganglioma surgery and also learned that the tumor had metastasized to the surrounded lymph nodes (which had been removed during surgery) and is classified as malignant. I’ll be going to see an oncologist to have further scans done to see if the Paraganglioma has metastasized to any other areas of my body, and also to discuss radiation treatment which I’ll probably be undergoing next month. Like I was explaining in my dream, these are so rare, there’s not many examples of how patients with cancerous Paragangliomas have responded to various treatment, but we think the outlook is pretty good, and I’ve already had my surgery, so at least I don’t have that to be worried about any more.

It’s funny how life works, though. On Monday, while everyone else was playing April Fool’s jokes on each other, I was staring at my grandma laying in her casket and contemplating how to tell my family I have cancer as we all gathered together after Grandma’s unexpected death. I just wanted someone to shout “April Fools!” and for Grandma to sit up in her coffin and for me to not have cancer any more. Though really, in the midst of it all, I definitely felt the peace of God and the prayers of so many people who love me. I just feel hope, and an urgency to live out and enjoy my life with Phil and little Lucy. Like I said before, not one day is guaranteed to any of us, and stepping into a car to drive down the highway is often more dangerous than facing disease or surgery. Not that we should live life with the gloomy expectation of death, but we shouldn’t waste a day, or put our hope in materialistic nonsense. Tragedy and sickness are never welcome, but the realizations they bring about certainly are!

I’m feeling pretty good about things now. The worst part is telling people, and I often feel the urge to comfort those I tell, and assure them that I will be alright. I’m sure radiation will be a low point in my life, but I’m thankful for the healthcare I can receive, and for all of my family and friends who will be around to help. Things might not be as busy with this blog, because there are only so many hours in a day, and I’d like to reevaluate how to use them, and how much time I spend working on things for very little financial compensation. Little Lucy is in the other room whining for me right now, so I think I’ll go snuggle with her for a bit and thank God for the blessings he’s given me!

top photo: Andrew Junge, Pandora’s Box #13, 2009

Recovering

Hello, dear friends! Last Tuesday I went into surgery as planned, and boy what an experience it has been. My fears were not unfounded, and the procedure ended up being much more involved than we had hoped. My surgeons at The Cleveland Clinic, who are  a couple of the main guys in the world for this type of surgery, said I “win the prize for being the most difficult tumor to remove.” That was shocking to hear, since the size of the tumor was pretty average and appeared in the MRI to be manageable. I guess it’s really not the size that counts, but how much of its surrounds it has invaded. They had to do repair work to my arteries, and I ended up being under anesthesia much longer than we all expected- about six hours total. As I type this now, I’m staring at the keyboard, because my eyes can’t quite bear to look at the screen, and it’s already been six days since going under.

I am so thankful for life right now, but it’s a bit difficult to feel cheery when in actuality I feel miserable. I am so thankful for such skilled surgeons and for the insurance that has made all of this financially bearable. I am thankful that my nerves are still in tact and I will still be able to talk and swallow, but right now both of those are very difficult for me, and in combination with not being able to strain (I have sutures both on my arteries and on the outside of my neck) and not being able to talk, my interactions with Lucy are pretty limited right now. Talk about frustrating. My breast milk supply took a huge dive, and I’m dealing with the emotions of feeling like I am failing at providing for Lucy and losing my intimacy with her and also the emotions of waiting for pathology reports and wondering what life will be like if the tumor has metastasized to other areas of my body.

Right now I’m just focusing on getting healthy and enjoying lots of episodes of Foyle’s War on Netflix. I have to wait on my tumor’s pathology report and am going to have more body scans to rule out or confirm other tumors or cancer. The doctors said they are a bit more concerned about that than they were before surgery, because of my tumor’s invasiveness. But I’m trying not to think about that and keeping my head up above the cloud of gloom that sinks down on me every now and then. I had hoped to be two weeks ahead with blog posts before my surgery, but when my computer died, I lost one of those weeks and was only able to get one week ahead. I know you guys aren’t hanging around with baited breath waiting for me to update, but keeping this place lively is important to me, so hopefully I can get back to my regularly scheduled blogging. But for now, I’m just taking it easy. Thanks for all of your love and support!

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