XO&So

whipple

One Year

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November 15, 2017

 

I have been dreading this day because it marks one year since my life-changing, life-saving Whipple surgery. So many people who have this surgery don’t make it to a year later, and I understand how lucky I am to be alive and that I will get to live a long, healthy life, get married, have kids, and live my dreams. What I dreaded about today was the fact so often I’ve been told that how you feel a year after Whipple surgery will likely be your “new normal.” I have difficulty accepting how I feel now to be my new normal.

The cast of RENT measures a year in daylights, in sunsets, in midnights, and cups of coffee, in inches, in miles, in laughter, and strife.

The cast of CHELSEA would typically measure a year in the same way, but this year, as they say, has been different.

I’d measure November 15, 2016 to November 15, 2017 in hugs, hospital visits, stitches, staples, pain, nausea, macaroni and cheese (by the grace of Beyonce it’s one of the few foods I tolerate relatively well), tears, pajama days, naps, self-loathing, self-loving, and a lot of love and gratitude.

It has been and continues to be the hardest time in my life.

People, including myself, often like things to fit into neat, little boxes. We hope things have a beginning and an end date. We expect everyone will get better and be back to normal. It makes us more comfortable to hear someone is making progress than stuck in stagnation when we ask how they’re doing.

Progress pleases the soul and makes us feel like we’re going somewhere in life, and without progress, we tend to feel like we’re wasting our lives. I haven’t made many improvements in my health the last several months, and this lack of progress weighs on me.

(PLEASE READ UNTIL THE END AND I SWEAR YOU’LL SEE I’M NOT A NEGATIVE NANCY!)

My quality of life isn’t bad, it will just take some adjusting to, and I’m still very hopeful I will improve, get stronger, and continue to adjust.

These things take adjusting to: There are days I’m too tired to walk or stand for long. The day after a significant outing I feel like I hiked for eight hours the day before; it takes a massive toll on my body. I can’t absorb nutrients properly, digest most fruits and vegetables, or absorb fat from food I eat so I’ve lost any muscle I had which leads to being weak. I get dizzy and nauseous when I stand for a while. I get bouts of nausea so extreme I am literally paralyzed by them.

People tell me I look better than ever and that it seems like I am doing great and having fun, judging by my social media posts. But remember, we don’t post the lowlights, we post the highlights. Even as I write this, I’m conscious of coming across as too dark or too cynical, but more than anything I am trying to focus on being honest. A lot of us are going through tough times and hold back from sharing them with others because we fear it will alienate people or make them pity us, but truthfully, I think these painful experiences are what can unite us and bring us closer to one another.

As difficult as this year has been, it’s also been filled with a lot of experiences that were impossible to imagine when I was on what I considered to be my death bed this time last year.

This past year I’ve gone to concerts, I’ve laughed harder than I ever have in my life, I’ve gone horseback riding, swimming, and boating. I’ve danced, I’ve attended weddings, I’ve read great books and watched great movies, and I’ve had more warm hugs than I can count!

By any standard, I have a good and very, very lucky life.

I have so many people who love me unconditionally (and vice versa!) and remind me of this every day. I have countless people I can call for help should I need it, I always have plenty of food to eat, a warm bed to sleep in, pups to cuddle me, and a roof over my head in a home I love, and the best, best, best mom, dad, brother, and friends a girl could ask for.

Any amount of discomfort has NOTHING on all of that.

There is still SO much more good than bad in my life, and I regularly remind myself of this. Gratitude has been a common theme in any of my posts about my surgery and recovery, and it will continue to be.

Here’s why:

I’ve learned you can use your pain as a spotlight on your suffering, or you can use it as a magnifying glass for everything else in your life that is GOOD.

If you ask me, the choice is obvious.

Thank-you so much for reading and for your continued support.

xo – C

The Delicate Complexity of “How are you?”

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Your emotional intelligence will generally guide you to navigating interactions and determining when and to whom you open up when your life is normal and you’ve inflicted nothing other than the usual bumps and bruises that come from life. But when you’re going through any great emotional or physical trauma, typically benign conversations can become slightly more complicated to navigate.

Since getting sick last year, I sometimes feel like an emotional leper, as though if I’m too honest or raw about whatever is happening that day, whoever hears about it will feel it too. 

My whole life I’ve wanted to be known as a positive person. I love the idea of people thinking of me, “She’s always in a good mood.” Of course, this isn’t humanly possible, so all I can do is try my best to be a ray of light whenever I can, but accepting that this doesn’t mean “always.”

When you go through anything traumatic, be it the loss of a loved one, emotional or physical abuse, divorce, or illness, your “humanness” bursts to your surface and “ALWAYS being in a good mood” is even less of a possibility than ever before. 

It’s as if the slightest penetration of your protective shell would lead to a barrage of emotions, tears, anger so extreme you, or anyone who witnesses it, could never come back from it. You develop ways to cushion your shell and keep all of that utter humanity from spilling over into the world when you don’t want it to – because not only are you protecting yourself from feeling the extent of your trauma, you’re also protecting the world from it.

On top of dealing with whatever is going on with you, you have the added weight (that, truthfully, you place on yourself) of not wanting to upset other people or burden them with your pain.

So, when people ask questions like:

“How are you?” “How are you feeling?” “How have you been doing?” 

(and they’re asking as actual questions rather than a standard “what’s up?” greeting)

I Usually Think Something Like:

“Well, today I was too weak to make it up my stairs without help.”

“Not great – today I laid in my bed for three hours completely paralyzed by nausea.”

“I’m good! I went grocery shopping without having to stop and sit down once today.”

“I’m okay; I got so dizzy and nauseous at the mall today I had to sit down in the middle of a store.”

But What I Say is:

“Pretty good! Just taking things day by day.”

“Good thanks! Keeping busy.”

“Not too bad! Good days and bad days.”

No matter what you’ve been through, I’m sure you’ve had days where you just reply “good” when someone asks how you are when you really want to say, “I’m falling apart.”

Naturally, we don’t want to dissolve into a puddle of tears when a bank teller asks us how we’re doing, and for the sake of all civilization, we save our really candid and in-depth answers for the times and the people we feel comfortable sharing them with.

People usually have really good intentions when they ask how you are. They’re trying to show they care about your well-being as a good person would.

I’ve learned there’s a delicate complexity to asking “How are you?”

In part, the asker has to be fully prepared for an answer that makes them uncomfortable, or that requires more of them than they stand ready to give (ever been there when you quickly ask someone how they are and suddenly wonder why you aren’t charging them by the hour for your support?). Or maybe their own bank of feelings is running low that day, and they’re unprepared to give up emotional energy they weren’t planning on spending. 

On the other hand, the askee weighs responding honestly with where they’re at in that moment, with not wanting to burden the asker with the weight of their answer because we don’t want that pesky emotional leprosy to spread any further than it has to. 

So, this is what I’ve found works for me. When someone asks how I am, and it turns out at that moment I’m not doing that well, I can just say:

“You know, I’m not doing very well today, but I really appreciate you asking.”

This is a way to remain honest and authentic about your feelings without launching into hysterics (there’s a time and a place for that, but I don’t believe it’s EVERY TIME someone asks how you are). It also tells people that it was good of them to ask because a lot of people shy away from tough topics because they feel like they won’t say or do the right thing.

But hey, we’re all just learning and life is full of unchartered territory for everyone, and keeping positive lines of communication open seems like the best way to get through it all together.

Thank-you, as always, for reading. As I mentioned, I like being thought of as a positive person, so stuff like this can be hard for me to write, but I think the hard stuff is the important stuff!

xo – C

 

 

 

 

 

Lost Time

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I heard a quote once that read something like, “time is the only thing you can give that you can’t get back.” Of course, that’s what makes time spent serving others, or even taking care of yourself such a gift. The problem is, some of your time will be spent in ways you don’t have much control over. 

Yes, you can control (to an extent) your attitude which impacts your experience during time spent, but ultimately, how all of your time spent isn’t up to you. 

I’ve struggled with this concept a lot over the past year. With being sick and having surgery, my time has naturally had to be spent differently than it would have otherwise. Time in pain, time in the hospital, time recovering, and time to say “no” to things that I wish I could say “yes” to.

At least once a week I have a moment of near panic that I seem to have lost this past year of my life. It’s gone fast, so fast, when I look back at the time as a whole. Perhaps this is a blessing when you’re going through something so difficult. But the days, especially the hard days, drag on if that makes any sense.  

It seems like a cruel joke that time really does fly when you’re having fun, but it halts when you’re suffering.  

Years ago, if you’d ask what my life would look like when I was 27/28, it wouldn’t have involved recovering from a major surgery and dealing with the lifelong consequences of that surgery.  

This is the time of my life I expected to be married with kids, or at least continuing what I was doing before I got sick: going out and spending my time as I please, having fun with friends, and just generally being a “young and healthy” person.  

In many ways, the expected vibrancy of this time of my life seems to have dissipated. 

I wrestle with the concept that while I needed the surgery to live, which therefore adds years onto my life, the last eight months have been so hard and in dark moments I’ll wonder if “losing” this time was really worth it. (It is).

These eight months have passed as they needed to; I’ve had surgery and been recovering from it as you need to.

No one expected me to be back to a “normal life” by now, but accepting that this year has been spent in a way I didn’t choose proved very difficult and it’s been forcing me to let go of expectations left and right.

When I miss out on doing things all my friends are doing because I’m too sick or too weak to participate, I feel mad, and I feel sad – like when you’re five years old and your parents send you to bed but you want to keep playing. I feel like I’m missing out on time well spent, or at least time spent how I WANT to spend it.

The rational part of my brain reassures me that I’ve spent this time exactly as I needed to, and I have so many more years to look forward to thanks to this difficult year.  

Most of the time, the rational part of my brain has control. (Of that thought, anyway). But there are times when the childlike, less rational part of my brain is mad at myself and mad at the world for this past year.  

Thinking big picture, “losing” one year isn’t so bad. But on a smaller scale and through the lens best to examine my life, it feels unfair. AS IF life is fair for anyone.

Besides, even considering what’s happened the last year, I am still one of the luckiest people on earth.

I’ve also realized the only way to learn lessons and gain experience is by spending time.

And the time I’ve spent this last year has been overflowing with lessons and experience I could have never had otherwise, and the lessons and experiences from this year will ultimately make other years better.

I guess sometimes the time that is “forced” upon you, i.e., the difficult times no one would ever CHOOSE, is the time that teaches you how to enjoy the time you spend as you please.    

Now the times in my life spent feeling good and doing things that make me happy never go unnoticed. “Good days” are that much better because I have the bad days to compare them too.

And the time that passes during those hard moments has become the greatest teacher; its voice in my head reminding me to “soak it in” when I’m feeling good  

Hard times make the good times better.  

But the greatest lesson of all has been learning that having time to spend in the first place – whether it’s spent in hard moments or the most fun ones – is a gift in itself.