Tag Archives: ulcerative colitis

Shittiest Year Ever: The Truth

“We live in a fantasy world, a world of illusion. The great task in life is to find reality.” – Iris Murdoch

My kid just went through the hardest year of his life.

He had his colon removed. He had multiple surgeries and was in and out of hospitals through the entire year. In the middle of this, he lost his father. And in the process of losing his father, he lost his home. This 22-year-old “kid” (yes, he’s still a kid) had his entire world turned upside down.  And you know what I posted on Facebook through it all?

Smiling faces.

Yep. I posted the triumphs.

The photos of him walking after his first surgery. The photo of his first day home after his first 21-day hospital stay. The photo of him smiling at his new home (my house), surrounded by pets and love.  And, most recently, the photo of his triumphant first day back to work. His smiling first step back into “normalcy.”

Etc. Etc. Etc.

But you know what I didn’t post photos of during all that?

I didn’t post photos of the fear. The sadness. The anger. The pain. So, so much pain. Unimaginable, gut-wrenching pain – emotional and physical.

I didn’t post photos of him waking up and seeing a piece of his intestine on the outside of his body. I didn’t post photos of the bag of waste he wore on himself for months. I didn’t post photos of him doubled over in pain when his remaining intestines would not work properly. I didn’t post photos of the ribs we could easily count and the hipbones and shoulder bones that stuck out grotesquely with no body fat to surround them.

I didn’t post the photo of him as he climbed in the bed beside his dying father with tears streaming down his face.

I didn’t post photos of the fights.

Oh my god, the fights.

I didn’t tell everyone how awful some of the times got between us.

Jeff and I have always had trouble getting along – he was always his daddy’s boy and chose to live with him from an early age. The older he gets, the more I realize why we had so much trouble bonding. We are so incredibly alike. We feel things and we feel them hard. We get angry. We get scared. We love. We hate. We feel it all. Too much, and all at once.  (And, frankly, we both despise that facet of ourselves.)

There were arguments over EVERYTHING over this past year. Especially during those endless four-hour drives to his hospital. I like to take my time. I like to go in a gas station and peruse. I tend to be late for things. Jeff is always in a hurry. He likes to be insanely early for everything. He likes to get in a store and get out.

Every trip was a minefield.

But did anyone see that?  Nope.  Just our “on the road again” smiling faces in the car as we set out on that beautiful drive to yet another appointment. Yet another surgery. Yet another long, drawn-out hospital stay (and hotel stay for me) where we still felt like he wasn’t any better when we left.

And you know what else I didn’t post photos of?

The argument we had this week when he realized that this job wasn’t going to work and abruptly left it. When I got so unfairly angry at him over that choice that I told him he needed to find another place to live. When we fought back and forth over texts for days after he got his things and left. When he cried alone in an empty house that he had to go back to without his dad. When I cried alone in my bedroom because I missed him so much but somehow thought I was doing the right thing to make him a ‘better person.’

No. No one saw any of that.

And why not?

That’s what I’m sitting here asking myself as I write this.

Why didn’t anyone see all that?

Now, I didn’t lie. When I showed you smiling faces, we were really smiling. There were definitely happy times. There were bonding times. There were moments where, even though all of this tragedy was happening all around us, we both knew we would not have been spending this kind of time around each other had it not been happening. Somewhere deep down, even through all the turmoil, I think we both realized we were getting to know one another in ways we hadn’t taken the time to do in the past because we had never been afforded the opportunity.

So, no, I didn’t ‘mislead my public.’ I don’t think any of us ever do that on purpose.

We just conveniently leave things out.

We filter our lives so that they look the best they can.

Sometimes I sit and look at pictures that women post [yes, I’m being gender specific here because we all know it’s usually women] where they’ve filtered themselves to the point that they are practically unrecognizable. I hate to admit this, but I make fun of them. Sometimes even out loud. I make all the jokes. (“Hope they don’t go missing…no one will know what they really look like.” Etc.)

I’m kind of a jerk.

You know what else I am?

A frickin hypocrite.

Because I’ve done that with my life. I’ve done that with my kid’s life. I’ve given him this impossible standard to live up to.  All this darn happiness and strength and triumph. Why do I do that? Why did I do that to him? To me? To us?

Why did I make us think we had something to prove to someone?  Why did I subconsciously show him that he has to be tough all the time? That he has to be such a success?

Screw that.

Life is hard, y’all.  It’s so incredibly hard. And sometimes we’re going to make the wrong choices. Many times, situations are not going to have a silver lining.

They just aren’t.

Some of you may not know, but I write for the Chicken Soup for the Soul series. Later this year, my eighth story will be printed with them. My publicist sent me an email a month or so ago about an upcoming book title regarding overcoming tough times. They wanted to know if I was interested in writing a story about any possible tough time I’ve overcome lately in my life.

Ha! Seriously? How serendipitous. This was going to be right in my wheelhouse. Let the typing commence.

When I sat down to write this, that was my intention. I was going to spin out the best overcoming tough times story they’d ever heard.

But nope. Not this time.

Somehow the truth just started flowing out of my fingers and I am powerless to stop it. It’s time to be real. It’s time to admit that life is hard. Things hurt. Things hurt so bad that you sometimes can’t breathe. You sometimes spend almost an entire day in bed because you are too sad to even try to get up.

But then the next day, you do.

You just do. Because you have no choice.

So there you go. The other side of this horrendous, pile-of-shit year that my kid just went through. That I just went through. That our family went through.

And are still going through.

This is the real us. And you know what?

That’s okay too.

It just is.

Blogging Break: My 2020 Writer’s Block

“You may be able to take a break from writing, but you won’t be able to take a break from being a writer.” – Stephen Leigh

It has been almost two years since I wrote in this blog. I realized that with astonishment today as I looked back at my last post dated July of 2019. When I started this blog, I couldn’t imagine even going a week without writing in it. And yet, here we are. (Funny how life likes to make liars of us, right?)

So, why the absence?

Wow. Where do I even begin? I guess we’ll start here:

In October 2020, I lost my ex-husband.

(Ok, I know that’s a strange thing to say. How can I lose my ex-husband?  Yes, Kevin passed away – but is that allowed to be my loss?  Trust me, I struggled with that almost more than the grief itself. Was I even allowed to be grieving? What right did I have?)

But I digress. A little back story:

For the last five years or so of Kevin’s life, his health started taking a drastic turn downhill. In his late teens, he was diagnosed with Becker muscular dystrophy, a progressive disease that causes a slow deterioration of his muscles over time. He had trouble walking for his entire adult life, but those last five years found him in a wheelchair. Our son Jeff, now 22, spent his older teen and early 20 years taking care of his father. While watching his younger sister move away and go to college, Jeff stayed behind in their little small town with his dad. It was just the two of them – father and son; caregiver and patient; roommates; friends. His dad and I had been divorced since the kids were very young, but I still lived close by. I had remarried my wonderful husband Richard and we all got along just fine. My husband and I even rode over and played cards with Jeff and Kevin occasionally if you can believe that.

Then 2020 struck.

I know we all have our 2020 stories. But man. Ours was a doozy.

The year started with my son getting drastically sick. We took him to the local hospital where he was promptly admitted, diagnosed with ulcerative colitis, and, after a 20-day hospital stay (complete with a transfer to a larger hospital four hours away that specialized in his condition), had his entire colon removed. A seemingly healthy 21 year old kid now had an ostomy bag. Needless to say, this put a bit of a damper on his caregiving for his father. Suddenly, Jeff was the one needing care himself.  After some heartfelt conversations with my husband, we decided I needed to go stay with them to help.

I began living part-time with my ex-husband and son.

To outsiders, this was quite the strange situation. But to us? I don’t know – it just worked. My son needed me. And, even more than that, he needed to know that his father was being taken care of. Now, at this point, his father only needed small things. A little help with household chores and things like that. But that was soon to change.

In June 2020, the very day that my son and I returned home from his second week-long hospital stay for a second surgery, his father was attempting to walk down the hall to greet us at the door, and fell.  He broke his femur.

He was whisked away in an ambulance and, like his son, was transferred to a larger hospital where he would stay for close to a month. When he came home, his need for care drastically increased. He was no longer able to take care of his basic needs. Already suffering from muscular dystrophy, there was no way his other muscles could work in place of the leg that he had so badly broken. With little to no upper body strength, he couldn’t even transfer himself to a sitting position – meaning he needed help with pretty much everything he did to care for himself.

And then, he started getting worse.

At first, we thought maybe the fall and subsequent break had just weakened his muscles to the point that he had lost all energy. But soon, he began getting sick to his stomach. And then, the tell-tale sign – his skin starting turning yellow. After some bloodwork, it was determined that his liver was not functioning properly and he was, once again, shipped off to another hospital for more tests. Meanwhile, our son had his third surgery (the second of a two-surgery series that involved removing his ostomy bag and placing a surgically engineered “replacement” called a j-pouch) and was not healing as well as we had expected. So, with our son recuperating at home, and Kevin’s mother and I taking turns between caring for Jeff and visiting Kevin in the hospital (during the small windows of time we were allowed given the COVID situation), life became a bit hectic, to say the least. And, within a few days, we were given the diagnosis for Jeff’s dad – it was cirrhosis of the liver.

At first, there was a hope. Even though his cirrhosis was extremely advanced and treatment was probably not an option – there was always the chance of a transplant. Even with Kevin’s preexisting muscular condition, there was a possibility he was a surgical candidate. So off he went to another hospital – where we were soon to receive the devastating news: the cirrhosis was too far advanced. He would not survive the transplant surgery.

Kevin was told there was nothing that could be done, and he was sent home to live out his last days.

We were hoping to have 6 months to a year with him but, sadly, that was not to be. Less than a month from being sent home, he passed away early one Sunday morning while the rest of the family was sleeping and I sat by his bedside, holding his hand.

There’s so much more I want to say about his passing – and I’m sure I will one day when I find the words – but that’s not what this blog is about. What it is about, I’m not sure really. I just know that somehow I need to vomit this last year out onto a screen. As I read over this, it seems to be reading as a news report, and I’m sorry for that. But I’m still, even all these months later, trying to learn to feel what has happened to our family. I’m just not there yet.

After Kevin’s passing, Jeff’s condition proceeded to go downhill. At first, we all assumed that it was just emotional. Of course he was mourning his father – his best friend – so he’d need a little time to be able to concentrate on healing and adjusting to life without his ostomy bag. But soon, we began to realize the problem went deeper than that. He continued to lose weight and could not eat without immediately rushing to the bathroom to lose it all, one way or the other. When the kid who had just the year before weighed 182 pounds hit his lowest weight of 110, it was obvious that he was not thriving.

So back to the hospital he went.

Which brings us to now.

After a two-week hospital stay that ended at the end of January, my son is now on a PICC line where he receives his nutrients in liquid form that go from a tube in his upper arm that extends directly into an artery in his heart. Just since being placed on this line, though, he has gained over 30 pounds. It’s working!

After the year we’ve had, I’m almost hesitant to start to feel any hope; but yet, I do. A small part of me is truly hoping that maybe this time, the worst is behind us and there’s an end in sight to all of this disaster. Maybe that’s why I feel drawn back to this blog? Maybe a small part of me is ready to start processing what has happened to all of us? What has happened to me?

I don’t know.

I recently started therapy. (Zoom therapy of course as COVID still looms over us. Ironically, this whole story has existed amidst a pandemic and I’ve barely mentioned it…) I’ve only had one session so far and I found myself sitting there at first wondering what I was even doing. Why was I there? But as is the case with good therapy, the answer suddenly presented itself.

I have forgotten how to feel.

When there was so much requiring my attention – requiring my participation – I had no time to stop and process anything. No time to decide how I felt about it because it wasn’t about me. It was about my son. It was about my ex-husband. It was about my grieving daughter. It was about everything and everyone around me that needed me. They needed my presence. My action. My feelings would just have to take a backseat for the time being.

But now?

I don’t know. Maybe now it’s time to try to get out of my head, and see what’s going on in my heart. I haven’t checked in with that fella for a while. Maybe I better make sure he’s still there.

Thanks for listening. Maybe I’ll see ya again soon as I start the journey back to figuring out what’s in this jumbled head of mine.

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