A Virus to Remember - Uncover Ostomy
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A Virus to Remember

I’m finally sitting up, at my desk, able to type these words into a blog post without my mind floating above my body, looking down at it in longing.

For the past week, I have been fighting off a virus that had made me a literal zombie.

I was unable stand, walk, or even hold my arms up to type on my phone.

My brain felt like it was floating in a cloud of marshmallow fluff and I was unable to focus on typing a simple email response.

My skin was pale enough for nurses to ask me if I was ok.

My eyes were dead, drained of any form of life (according to my loving husband.)

If I were to have clocked this on the Spoonie Meter, I would have ranked it as using 100% of my spoons.

The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. ``Spoons`` are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person ``recharges`` through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

(Full breakdown of the Spoon Theory)

What’s important to note here is that I am actually using the “Spoon Theory” to quantify the sickness that I endured this past week, because I very rarely do.

My In Social teams knows that I don’t usually take “sick days” because, then, every day would be a sick day!

I get sick often. In fact, I would say my normal state is some sort of sick. However, despite having to deal with something wrong in/on my body on a day-to-day basis, I barely ever find it impeding on my ability to function like a normal human being.

Maybe this is a biological “fight or flight” response my body has developed out of necessity, or I’ve just gotten used to never being at level-100 healthy.

Either way, even when I am sick, I am quite a high-functioning member of society.

➡️ Internal crushing sensation from eating too many carrots with an ileostomy? I drink a bunch of diet coke, take some meds, and I continue to write that client proposal.

➡️  Nose dripping and eyes watering from a sinus infection? I blow my nose a bunch of times and squint as I read through my emails. Tea helps, too.

➡️ Horrible, body clenching period cramps? (Every month for me, ladies!) I take some meds, have a bit of chocolate, and I carry on with my day.

Even when I had a minor Crohn’s Disease relapse a few years ago, sure, I had a significant amount of stomach pain, but the pain never drained my mental or physical energy (aka spoons!) 

Since I caught that relapse early, I got off easy. I was in pain, but not as bad as I had experienced before, and I also had my ostomy to make bathroom trips much more manageable. It was a significantly lighter “version” of my disease compared to how bad it had gotten when I was a kid.

But that’s the thing –

The last time I felt so sick and useless and hopeless as I had this past week was when I was a sick kid in a hospital bed. Yet, at that time, I was just a kid. 

As a kid, I didn’t have a business to run or team members and clients to manage, I didn’t have a household or a husband to take care of, I didn’t have auditions to go to or a laundry list of adult responsibilities that needed to be handled.  When I was sick as a kid, I could just spend my hours, days, weeks in a bed without any major consequences. It sucked, (a lot), but I could just be. 

Fast forward to this past week when this Zombie Virus took over my body. Unable to move, unable to think, unable to be human, I had no pain, and yet, I could not do a damned thing. I was essentially dead. 

So here I am, finally coming out of this fog, realizing just how lucky I am 99% of the time.

I am lucky that my disease is still in remission (I had a scope on Tuesday, which gave me the all clear – and why I was around nurses this week.) I am lucky that even when I do get sick, I am somehow able to press ahead. I am lucky that on a day-to-day basis, I do have all my spoons.

After this week, I am more aware than ever before just how quickly my life could change in an instant. 

I woke up with this virus out of nowhere, and it turned my life upside down for a week – only a week. Thankfully, viruses can be overcome with time.

What about the diseases that can’t be overcome with time? For me, that’s Crohn’s Disease. For others, that may be cancer or other illnesses that have lead us to the Spoonie way of life. So, what do we do about those diseases that could just appear one day and throw everything we know upside down?

Well, nothing.

You can’t do a damn thing.

Just like I couldn’t prevent this thankfully short-lived virus from taking up inside me, I can’t control if my disease is going to come back and take over my life. Neither can you.

What we can do is make the most of now. We can also prepare for the times when we may be down for the count. Surround ourselves with people who love us and support us, have backup plans, and sometimes just accept what life has dealt us.

I’m thankful for my amazing husband who kept bringing me water and forcing me to drink it, who went out to buy me popsicles and (vegan) ice cream, and let me sleep on the couch next to him when I kept passing out from exhaustion.

I am thankful for my awesome team of employees who helped keep my company functioning when I was not.

I am thankful for the fact that I can live as a member of society 99% of the time, even when I am sick, because I know that not everyone can.

I know that a lot of people live the Spoonie life most of the time and I can appreciate how hard it is. I felt the struggle for just 7 days and it was horrible. I can’t imagine having to be that way for longer, even knowing that there’s a real possibility, some day down the road, that my disease could come back and I will have to.

For now, I’m getting back into the swing of things, taking control of my responsibilities and being an adult again, but never forgetting what could be lurking around the corner, turning me back into a zombie.

For now, I’m holding on to my spoons harder than I have in a while. 

Jessica Grossman
  • Karen Ali
    Posted at 18:49h, 12 April Reply

    Wow! So glad your feeling better! You are a very strong woman! Blows my mind! Your so encouraging, thank you for sharing

  • Brianna Schiavoni
    Posted at 17:16h, 13 April Reply

    Jessica: Thank you for being brutally honest. Thank you for allowing a glimpse at what it’s like to live with Chrones.

    So much respect – Brianna

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