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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.

***

Loving Lenny

“Until one has loved an animal, a part of one’s soul remains unawakened.”
– Anatole France

“Something is wrong.”

It was three years ago today on a bright, cold winter Saturday morning in February. I had popped out of bed early and hurriedly thrown on a pair of old jeans and a comfy sweatshirt, excited that this much-anticipated day had finally arrived. After six full days of this animal-lover’s pleading and begging on Facebook for someone to adopt a sweet, lonely pit bull mix that had found his way to our local animal shelter, my prayer had finally been answered. Little “Lenny” (the name I promptly bestowed upon him after observing his ‘gentle giant’ ways that mirrored his namesake in the classic Of Mice and Men) was going home! And who had adopted him?

Lenny’s shelter photo – Facebook, Feb 2015

You guessed it—me!

After seeing that there was no public interest in saving this sweet boy from his ever looming demise date, my big-hearted husband finally gave in. Lenny was coming home to join our family. Lenny would be pet number five.

The only problem we faced was timing. The shelter (which was unfortunately not a no-kill shelter) had scheduled sweet Lenny to be put to sleep on Friday. But because of mine and my husband’s out-of-town work schedules, neither of us could work it out to go pick up our sweet boy before closing time on Friday. So, the shelter graciously agreed to extend his date to Saturday—with our promise that we’d definitely show up by the time they closed at noon. No problem! I rose with the sun with my happy heart pounding out of my chest. Our baby was coming home!

And then I walked into the living room and everything changed.

There lied my precious fat calico kitty Patches on her little pet bed, struggling for air.

“Something is wrong.”

At first the words came out in a whisper, but as I realized the seriousness of the situation, they gained strength.

“Something is wrong!”

I called out to my husband, “Richard! Something is wrong with Patches!”

My husband came into the room and said, “Let’s get her to the vet. Hurry.”

I began scrambling for my shoes and for a large towel to wrap my sweet cat in. We rushed to the car and started the thirty minute drive to town, with me all the while holding my fluffy girl like a baby in my arms in the passenger seat. We made it to the emergency vet and while my husband ran to the counter to explain what was happening, my beautiful cat’s gentle sweet soul left her body as she lay in my arms in the waiting room.

My girl was gone.

The last photo of Patches – February 6, 2015

Just like that. This day that was supposed to be filled with such anticipated joy was just bombarded with a soul-crushing sadness that I couldn’t possibly have seen coming. I heard voices swirling around me, offering help–burial services, cremation–but all I could do was look at the lifeless eyes lying in my aching arms. My sweet girl had seen me through so much over the past few years. She had watched my children grow with me. She saw my marriage fall apart. She saw me fall in love again and welcomed this new, amazing man into our world. She had been my constant through all the changes swirling around me.

And now she was gone.

I looked up into my husband’s empathetic eyes and saw the pain I was feeling reflecting back at me. He gently took my arm and led me to the car. I wouldn’t let Patches go. I held onto her lifeless body and couldn’t bring myself to put her down.

“Honey. We have to get to the shelter.”

My husband’s sobering words pulled me out of my stupor and I glanced at the clock. 11:00 a.m. In the rush of the morning’s tragic events, time had slipped away from me. We lost my baby that morning but we still had work to do. We didn’t have time to take my sweet Patches home and bury her and come back to get Lenny. We had no choice. We had to go straight to the shelter or we’d be too late.

We pulled into the parking lot of the shelter and my strong, stable husband finally convinced me to turn my kitty over to him. He gently took her from my arms, covered her lifeless body with the towel, and placed her into a box. We had no choice but to lay her sweet body in the trunk until we could get her home to her proper burial. After we got her in place, my husband took my hand and walked me into the shelter. There, we found our Lenny.

And he was terrified.

My eyes locked onto his and I saw his fear of the unknown. I saw the uncertainty and questions that I was feeling too. Could I do this? Could I switch gears so suddenly? From the heartbreaking pain of loss straight into the joy of a new adoption?

No. I couldn’t. And my sweet Lenny didn’t expect me to.

Dragging our terrified new pet to our car, my husband placed him in the backseat. And, in a last minute mindless decision, I climbed back there with him. We both cried all the way home. Both of us were scared. Both of us were leaving what was familiar to us and embarking on a journey where nothing would ever be the same. Both of us were shaking, sad, and weak.

Lenny’s ride home from the shelter – 2/7/2015

We needed each other more than ever.

Now, three years later, here we are. We’ve adjusted. My sweet Lenny helped me through one of the hardest days of my life back then. And I think I helped him through his, too. We snuggled on the couch on that cold Saturday back in February until our pain began to subside. We held onto each other until we realized that our broken hearts had just enough room for each other. My gentle giant coaxed me back to happiness and taught me to open my heart to another furry soul. And I taught him that some people just won’t ever leave you.

They just won’t.

We’re a team now, sweet Lenny and me. We didn’t have the happiest of starts, but we’ve promised each other that we’ll have a happy ending. Instead of me saving him, he saved me.

Someone told me once that they believed that my precious Patches chose February 7, 2015 to leave me on purpose. She knew that this would be the day that I would be able to accept her departure. I don’t know about all that. But I do know this.

A whole big furry ball of gentleness and love immediately filled the spot that she left behind. Was that divine intervention? I don’t know.

But I certainly know who’s a good boy.  My Lenny, that’s who.

Lenny and mom. February 2018.

***

“When we adopt a dog or any pet, we know it is going to end with us having to say goodbye, but we still do it. And we do it for a very good reason: They bring so much joy and optimism and happiness. They attack every moment of every day with that attitude.”
– Bruce Cameron

The Resistance: Naomi’s Story

As a writer, sometimes I see words from others that are so much more powerful than anything I could’ve come up with myself. This is one of those times. Read Naomi Johnson’s words below, and ask yourself: what will you do today to change the world?

***

“Did you ever think as a child that you would have helped Jesus carry his cross? Did you ever pretend you would have taken in a Jewish family and shelter them at your own peril? When I read “The Diary of Ann Frank” as a child, I fantasized I would do just that. I was young during the Civil Rights era. I saw my mom and dad stand up to racism in the 50’s and 60’s, but I was too young to register to vote or stand in solidarity. But I was certain I would have.

The ensuing years were spent rearing a family, working, and being caught up in life. There wasn’t much opportunity to be brave. But now we are here, and a defining moral decision is facing us, each and every one.

As a financial advisor, you are ill-advised to discuss religion and politics and many other personal topics with clients and prospects. In the Spring of 2016, I made a decision. I was going to become as authentic as I could be in my life, and share my journey and my truth.

I decided to speak out about my past sexual abuse, in the context of Donald Trump and his mis-treatment of women. I began up speak openly about my struggle to rebuild my life after being filled with guilt, fear and shame as a result. I shared my struggle with using food to stuff emotions and hide my damaged sexuality under a layer of fat. No one is more invisible in society than a fat woman.

I spoke honestly about the effects of my issues on my children, and how I was trying to be a better mother to my adult children than I was when they were young. When it seemed appropriate, I would ask clients about their tender spots, their struggles, what kept them up at night, their regrets, their hopes and dreams.

Here is the truth, it was the bravest thing I have ever done. I began to speak out about what I saw happening. Those who have been my Facebook friends know that all to well! I shared my feelings of horror about many of the evangelical leaders supporting Donald Trump. I shared how disheartened I was when Franklin Graham got behind Donald Trump, and that is not a popular stance here in Boone, North Carolina, the home of Samaritan’s Purse.

I shared how my family was so split over the election and the pain that caused. I talked about racism, and other hot button issues, including gender issues. When a client ridiculed Caitlin Jenner, I asked him point blank, “Have you ever thought about how much emotional pain a man would have to be in to have the gender reassignment surgery? (Truth alert, I was a bit cruder than that). He flinched, but there was a long pause as he admitted that he had not thought about that.

I lost some clients. I knew I would when I made the decision. I will probably lose more. And I am okay with that. Because doing the hard thing is worth it. To be open and not have to hide what I believe is worth it. To integrate my work and my life is worth it. And I have learned so much more about my clients’ hopes and fears, for when I became more open, so did they.

I do not have the answers to the divisive issues of our day. But I know this, the issues are hard and the solutions are complex. I know this: There is no “secret plan to defeat ISIS in 30 days”; I know that health care is complex; I know that normalizing racism is wrong; I know that name calling and mocking people is unworthy of a president; I know that a lie is a lie; I know that The Bible says that even the very elect will be deceived.

When I decided to embrace a more authentic life, I believe that, in some mystical way, I am helping Jesus carry the cross, I am housing the refugees, I am more openly standing against racism. These blessings more than make up for some lost revenue. And I believe that there are people who will find me and my partner Seth because we will take a stand.

I know this. It may get much worse, much faster than we can imagine. There are Nazis marching openly in the street. My dad and mom served in WWII to stop this evil. There are white supremacists marching openly with assault rifles, in front of the police, beating and kicking those in the resistance. Imagine if those young men were black, carrying assault rifles and jostling the police? Resisting the rising tyranny will be the defining moral issue of this time.

Here is my challenge to each of you: do what is right. It is as simple as that. You intuitively knew as a child what that was. You know you dreamed of being brave. You know how hard it is to stand against a bully. You have the chance today to take a morally courageous stand against what is being normalized in America. Become the adult your child dreamed you would be. Be brave. Like my mom, who left Ashe County, North Carolina, to fight Hitler. Like my dad, who left high school in Vermont to enlist and fight Hitler.

Welcome to the resistance!”

– Naomi Johnson

Naomi Johnson’s brave and courageous mother who served her country in WWII.

***

  “Get up, stand up, stand up for your rights.
Get up, stand up, don’t give up the fight.”
– Bob Marley