Things/People I’ve Lost in Just a Few Years
I don’t know why I’m even still standing. What’s the point?
This is a short post.
Can I ask everyone a favor? Can you please be truthful with people? Make sure that whatever you say behind their back is the same thing you say to their face. Aside from the fact that it’s just plain hurtful when the two don’t match, it also makes everything you ever say questionable from that point. No one knows which one is the truth – what you say to the person or what you say about the person. It’s a form of abuse and it’s wrong. So please stop.
Just be good to people. If you really don’t like someone, don’t waste their time. Let them go. Life is much too hard already without you adding to the troubles.
If you can’t tell, I’m hurt. And I’m sad. And things aren’t going so well in my world these days. In a way, I miss moaning on Facebook. But in another way, I’m glad it’s not an option. Apparently, it was always just fodder for people’s gossip anyway.
It’s time to pull up my big girl panties and deal with things on my own.
I have been without Facebook for a month.
This doesn’t sound like something that is worthy of a blog post, but trust me – if you are a member of this or any other social network and you just stop cold turkey, it’s not as easy as you think.
Now before you sing my praises for my efforts, let me just put a pin in that balloon right now. It wasn’t my choice. I went to bed one night and woke up the next morning to the news that my Facebook page had been disabled. Not suspended, no warnings issued, no email alerts – my page was just GONE.
For the first week, I tried everything known to man. I cannot “log in” to send a message to support because my page apparently no longer exists. I found email addresses to various supposed Facebook “helpers,” (support@fb.com; hacked@fb.com; disabled@fb.com) and received a total of zero responses. I sent multiple emails a day from multiple email accounts. My main concern was to get my photos back. For over 16 years, I’ve used that platform as my “diary” so to speak. Everything I’ve done for the most part existed on that page, complete with photographic evidence. And worst of all – there were so many photos of my grandmother who recently passed that I know I do not have anywhere else. Same with my children’s father who passed five years ago. Yes, it says you have the option to “download” the information from your account, but it didn’t work for me because my account doesn’t exist. The “download” was an empty file. My memories are just gone.
So, the next logical step? Start a new Facebook and try again. I can’t go backward but maybe I can at least go forward, right?
Wrong.
Somehow every single effort I made at setting up another account got shut down. Even though I no longer have an account out there, I am apparently attempting to “impersonate someone else” by setting up a new account (even when I lied about my name and birthdate). Listen, if I had put all this effort into cleaning my house instead of trying to get this social media platform back, that baby would be spotless. You’d see the sun reflecting off it from wherever you live, I promise. I truly tried everything.
Which brings us to now.
After a few weeks of obsessively trying to get my page back, I suddenly realized that I didn’t care quite so much. I mean, of course, I’ll always feel sick to my stomach for everything I lost that was stored on there. But to offset that loss, you know what I gained?
Peace.
So much peace.
It’s so quiet without thousands of voices telling you what you should think, say and feel. It’s so calm now that I don’t have to convince the world that I’m a great person and that I have a wonderful marriage and family and that my granddaughter is the cutest child on earth (I mean, she is though). Suddenly, I’m kind of free.
Now, with that freedom comes something else. Something that I bet always comes with freedom to an extent.
Loneliness.
I am realizing who were actually my friends in the true sense of the word, and not just the “friends” moniker that Facebook attributed to them. And believe me, there are very few. Only one or two non-family members have reached out to me. You mean, all those people I’ve been trying to impress for sixteen years weren’t even a real part of my life? Welp – it looks that way. And while it does sting a little bit, it’s also a bit gratifying. I’ve always had trouble trusting friendships and it looks like I was kind of right to do that. Without snarky comebacks, witty posts, and shared public morals, there was actually no friendship at all. Not really.
As someone who has lost friends as often as she loses sock mates lately, I can tell you that life is quieter. I don’t need to bounce things off multiple people to see what they think about what I do or think. I’m just going to do or think it. The people who matter will know. Or maybe they won’t – maybe some things I’ll just keep to myself. (Lord, it has taken me WAY too long to learn this one.) No one walks in your shoes and when you give them the pretty version of your story, that’s all they know of you. When something you say or do veers from the path that you have created yourself for them to see, they sometimes don’t handle that so well and have a way of reminding you how “less than” you are because you aren’t sticking to the script. I don’t know, maybe this is just mumbo jumbo. It’s hard to put it into words but just suffice it to say that I feel more “real” now that I’m not trying to convince anyone of how great everything is. Sometimes things just aren’t great and that’s okay too. The people who love you will take it all and love you right through it.
So anyway, here I am. On my blog instead of Facebook. I don’t know if anyone even follows this thing anymore, but it doesn’t matter really. This is a place for me. I still need to get things out but from now on, I’ll be writing to myself. Not to everyone else. And things will be what they really are, not what I think people want them to be.
Hope you guys are living your lives for real out there. If you’re not, figure out what needs to change. I think it might be pretty important.
“Friendship causes heartbreaks, too.” – Unknown
A few days ago, someone on Facebook posted a status about adult friendship. It wasn’t anything poetic – just a simple statement about how hard it is to maintain friendships as adults (especially as women) and that if you’re out there missing that close friendship feeling, you’re not alone. This status resonated with so many, including myself. It was shared, reacted to, and commented on multiple times. I, too, shared it on my own Facebook feed with the caption “we don’t talk enough about this.” It’s been sitting on my mind ever since; so, I decided, “Hey. I have a blog. Let’s talk about it.”
So here I am.
As I sit here, though, I start to see maybe why we don’t talk about it. It’s tough. I’m a writer so I can go on for days about whatever topic is on my mind. But this one? Gosh, I don’t even know where to begin.
Maybe I’ll start by giving a personal example. Now, I do have friends. Close friends even. And I know I have one in particular who’d drop everything and come running if I needed him. But I think that’s just it…as we get older, our “needs” change. I remember when I was younger – any time any small thing happened, I just HAD to tell someone. It was like if someone didn’t know about it, then it didn’t really happen. But these days? Oh, let’s be honest – we have Facebook and other social media for those small things. If something interesting happens in my day, I don’t call up a close friend and tell them about it. I post it on Facebook so they and anyone else who wants to know (and many who don’t) can see every detail.
But the big things? The things that matter?
Now that’s a different story.
I’ve had some rough years lately. I know – we all have. Covid has kicked our butts. But for me, a lot has happened in the past four years that wasn’t at all related to Covid. I’ve lost jobs. I’ve lost loved ones. I’ve had substantial financial issues. I’ve gone through “empty nesting,” only to then have my adult child get desperately ill and move back home. I’ve become a grandma. The more these big things happen, the more mundane the small stuff seems. And as I mature (who knew THIS would finally happen?), I realize that everyone else has crap going on in their lives and they don’t need to be bothered with my stuff. Plus, it’s just harder to talk about the serious stuff. It just is.
So, I don’t.
Another thing that’s happened in these big event years is that I lost a close long-term friendship. No, not by death. It was by choice. We both came to realize that we weren’t supportive of each other anymore. These adult versions of ourselves were very different than the young adult versions were, and we just weren’t that compatible anymore. More than that, we were toxic. I could go into specifics, but I won’t. It just became a pissing contest of, “oh you think that’s bad? Well, check out what it’s like in my life…” And no one needs to be on the giving or receiving end of that nonsense.
So we walked away.
And let me tell you something. It stings.
I’ve ignored it for the most part. It has been about three years now and I’ve yet to really talk about it. I don’t even really want to talk about it now in this blog that is supposed to be about this very topic. But does it hurt? You bet. And what do we humans tend to do when something hurts? We try to make sure we don’t ever feel that pain again. Which means?
Maybe we make sure that friendships don’t matter to us as much anymore. You know? So it won’t hurt as bad when we lose them next time.
Okay, sure. This isn’t a new concept. We talk about this stuff all the time when it comes to relationships. But that’s just it – we talk about relationships. We congratulate, we commiserate, we share, we celebrate – we do all of these things when it comes to relationships. We have marriage ceremonies, engagement parties, heck, even divorce parties where the woman demolishes her wedding dress. We humans honor the shit out of the beginnings and endings of relationships.
But friendships?
Nope. They just kind of come and go with no hoopla. No photo burning parties were held when that aforesaid long-term friendship ended. And on that same token, no parades were had when I met a new good friend during my last theatre show. These things just happen, and we just go on.
But I don’t know…maybe we shouldn’t?
Maybe all these unacknowledged events need a little more acknowledgement. Maybe we’d come closer to healing and rebuilding stronger the next time if we take these things out and examine them once in a while.
When someone makes a status about friendships not lasting like they used to, it should just be a statement. Not a sentiment that brings hundreds of people out in droves to say, “Yeah! That! That’s a thing…why don’t we talk about that?”
So, anyway, here it is. I’m starting the conversation.
Okay, so there’s no earth-shattering news in this blog. No brilliant witty repartee to take with you and share as a Facebook status. Nope. This was just a “hmmm?” blog. Just a “why are we humans like this?” observation.
And hey, maybe you’ll walk away knowing it’s not just you these things are happening to. Not much in this world only happens to us and us alone. Even if it may feel like it because no one is discussing it.
Take care of yourselves out there, folks. You’re never alone. I promise. We’re all just out here trying to figure out this mess as we go.
***
“I’m not alone now either. The world is all around me. People leave, but there are always more coming. The catch is that you have to open the door to let them in.” -Kathy McCullough
“If you focus on what you left behind, you’ll never be able to see what lies ahead.” – Remi Gaillard
My life changed drastically just a little over two short years ago. The things that happen to “other people” were suddenly happening to us.
My son was diagnosed with a chronic illness.
In a matter of mere months, my seemingly healthy 21-year-old son was suddenly being transported by ambulance to the nearest university hospital and undergoing lifesaving surgery that would leave him without his entire large intestine.
No, not his spleen. Not his appendix. Not his tonsils, for goodness’ sake. Nothing that the body can easily live without. No. It was his ENTIRE large intestine.
And let me tell you, life changes drastically when you lose something like that.
So many hospitalizations were to follow. No sooner had he recovered from one surgery, we were back having another. And then, once the surgeries were over, came the adjustment. Trying to live life in this new state. Many hospitalizations would come from that too. There was even one time that his weight plummeted to 110 pounds (he started this process close to 190) and we truly almost lost him. Had it not been for the intervention of a PICC feeding line, we would have. A year to the day before, my son had been out playing basketball with his buddies, and there I was now looking down at his shriveled tiny body in a large hospital bed being kept alive by a string of milk-like substance being pumped directly into his heart.
I was scared. I didn’t want to lose my son. I kept it together at the time, of course. I kept putting one foot in front of the other and doing everything that needed to be done to keep my son with me. That’s all that mattered.
Soon after, we would come to understand that the lifesaving surgery was not the cure we hoped it to be. What had been diagnosed as ulcerative colitis, a disease that would end with the removal of the colon, was later deemed to be a severe case of Crohn’s Disease. A disease that would affect the entirety of his digestive tract. A disease that had no cure.
My son would have a lifelong fight ahead of him. On top of everything he had already been through.
At some point, I stopped being scared. That fear started to morph into something else.
Anger.
Oh yes. I was MAD. And once that anger set in, there was no letting it go. It was behind everything I did. Every word that came from my mouth had an underlying tone of anger. There was the question everyone asks when something like this happens – when you have to watch the person you love more than anything going through so much pain and loss. The question we all ask when we don’t understand.
WHY?
I’m not sure that question will ever be answered really. None of us have the capacity to understand why things happen the way they do.
But I do remember vividly the moment my anger started to ease.
One of the things I did to try to maintain some semblance of sanity through all of my son’s hospitalizations was to read. I’ve always been the type to grab a book when my own life gets too heavy so I that I could quietly fade away into someone else’s. Feeling a fictional character’s pain and loss was easier than feeling my own. Once the last page was turned, it was over. There was an ending. As the book finished, so did their troubles.
And then it was back to my own.
For many nights as I sat by his bedside, I’d have a book in my lap. What little sleep I did get was fitful – interrupted by the nurses coming in to check on him, or just by my own scattered brain. So, I’d fill the hours with books.
And I’ll never forget when I read the line that somehow changed me. The line that has still stuck with me to this day and comes back into my mind as often as I need it to.
The book was The Storyteller by Jodi Picoult. In one part, a woman is remembering back to when she walked in on her grandmother as she was coming out of a bath. She had just survived breast cancer and had recently undergone a mastectomy. The woman remembers her childhood self seeing that for the first time and recounts it as follows:
“‘…It’s missing,’ I said.
My grandmother smiled… ‘Yes,’ she said. ‘But see how much of me is left?’”
I remember reading that like it was yesterday. Before I even had time to fully process what I was feeling, I had to lay the book down and wipe my tears away. That sentence felt like a punch. A good punch, but a punch nonetheless. Here I was, mad at the world because so much of my son was missing. So much of his life was not going to be the same. So many of his plans were derailed and all because of what was took from him. What was ‘missing.’
And yet.
See how much of me is left?
In that very hospital where I sat, all around me at any given moment there were mothers and fathers saying final goodbyes to their children. To their loved ones. To the ones that lost everything, not just a piece of them.
See how much of me is left?
I still had my child. He still had his life. He was here. Right here in front of me.
See how much of me is left?
So very much was left. He has years ahead of him. He’ll have treatments to undergo, sure. But he’ll be here to undergo them. Life will go on. He’s HERE.
My baby is HERE.
See how much of me is left?
This has become a mantra for me in many ways. I’ve applied it to more situations even than the one with my son. Any time I lose something, I do my best to remember what’s left. To not focus on what’s gone, but to focus on what remains.
This simple little sentence in a novel somehow redirected my thoughts.
Of course, I’m human. Sometimes I fail and lose a little time focusing on what we don’t have anymore. But I always climb back out of it. And I do so with those words on my mind. I look at my son and see a warrior. A strong fighter who has battled in his own war for almost three years now and is still so full of life. So full of hope and a future. I look at my baby and I hear those words coming from him over and over and over again.
See how much of me is left?
Yes. I do, son. And there are no words for how grateful I am for that. Go out there and show the world why you’re still here. And know that your mother will be smiling in the background, filled with so much pride and gratitude for how much of you is left.
***
I haven’t written in here in a while. But I have something to say that won’t fit in a Facebook status.
And, frankly, I think it deserves more than that.
Have you ever been one of the ones who hear about an abuse situation and you ask yourself “why didn’t he/she just tell someone? Why didn’t they ask for help?”
Well, look at what just happened last night.
Look at what Will Smith did and, more notably, what Chris Rock did.
And there’s your answer.
If you haven’t heard yet (and I don’t know how you couldn’t have), last night Chris Rock (or whoever writes his material…come on now, you know he doesn’t make this stuff up as he goes) insulted Will Smith’s wife Jada by saying she should do a G.I. Jane 2 movie because of her shaved head. Jada has alopecia. It was a low blow, and I don’t think anyone would deny that. And that’s what the Oscars is all about. It’s a gigantic actor roast that the actors usually take with a grain of salt and laugh off.
But not this time.
Will Smith, slowly and methodically, rose from his seat, walked up to Chris Rock on national television, and smacked the crap out of him. He then went to his seat and screamed expletives…still on live television…telling Chris Rock to keep his wife’s name out of his ******* mouth.
Okidoke.
Now, the whole world (including me) has been focusing on what Will did and whether or not it was “justified.” (My take? HELL to the no.)
But I want to focus on something else.
Chris Rock.
Watch his reaction. If you’ve ever “been there,” then you know. I don’t have to tell you.
First, Chris jokes it away. Second, Chris agrees with him – he tells him he will keep her name out of his mouth as he has asked. Third, he unbelievably shakes it off as well as he can. He remains professional. “The show must go on.”
Then, today, I hear he’s not pressing charges.
There you go. THAT is why.
Half of the world right now is applauding Will Smith. And he didn’t even do this behind closed doors. He walked up to the man in front of God and everyone and he’s GETTING AWAY WITH IT. Not only is he getting away with it, some people are patting him on the back for it.
And why?
Because he is who he is.
I was married to a Will Smith once. No, he wasn’t internationally known for his acting career. But he sure was known as a “real good guy” in our church. And when I reached out for help, I was not believed. I was told that, religiously, the man was the head of the house and I should obey.
I see Chris Rock’s face and I wonder how many times my face showed the same expression. The shock, then the acceptance, and then the façade. Always the façade that comes next. The mask. The moving on. The keeping the show going and trying your best to make sure everyone else is okay and not “rock the boat” with a response that showed any emotion.
Why would anyone do anything about a “good guy” doing something like that behind closed doors, when a “good guy” just did it on live national television and not one damn thing will be done about it?
That’s why.
No, this is not a stretch. Physical violence was just condoned and some of us felt that in the depths of our soul and will never forget it.
***
Dear Kevin,
I know it probably seems strange to be writing a letter to my ex-husband. Especially with my current husband in the same room. But I think he understands.
None of us have ever been very traditional, have we?
With Father’s Day coming up, I just felt like I needed to tell you some things. So I decided to put them in a letter.
Since I last saw you, I’ve been thinking so much about what a good father you always were to our kids. Again, we certainly weren’t very traditional. As extremely young parents, I was the one who worked and tried to finish school while you stayed home with the babies. Because of that, you actually knew them better than I did. Especially when they were younger. I remember how it used to cause you so much pride that they would want their daddy instead of me when they were sick. And, even though there was a little jealousy in that for me, I admittedly kind of liked it too. You were just so darn good with them. You always seemed to know instinctively what they needed.
I remember hearing so many other women griping about how much they had to do with the kids and around the house while their husbands were never involved. That seemed like such a foreign concept to me. Your kids were your world.
And that never changed.
How lucky I was.
As is the case with so many young marriages, ours didn’t last. We divorced when the kids were 2 and 4. We sure had some rocky years in there, didn’t we? Good lord, the fights! And ironically, most of them were centered around who got the kids and when. Again, I’d hear the divorced women complaining that their kids never saw their daddies, but that was certainly not the case with us. You wanted them all the time. I had to fight you every step of the way. Not in court, though. We never did that, and I’m grateful. We just eventually figured it out on our own. As we were teaching them to share, we finally learned how to do it ourselves.
The older the kids got, the less we fought. I’m not sure why that happened. I guess it was a mixture of them being old enough to make their own decisions and us just growing up a little ourselves. Then, once the fighting stopped, we discovered something that we probably knew from the beginning.
We were actually really good friends.
I can’t count the times we were there for one another. Both of us took turns running low on funds and we’d help each other out when we could. When my short-lived second marriage fell apart, you let me come spend a few nights at your house until I could figure out what I was going to do. In so many ways, you were my closest friend.
And I tried to return the favor. You hated for people to know it, but you had muscular dystrophy. The older you got, the less you were able to hide it. Eventually, your ability to walk in public became more and more compromised and you started having to use the wheelchair that you had dreaded your whole life. But you accepted it. You did it.
And you just kept smiling.
Eventually you started needing more help with things. I remember when my husband Richard and I first got together, I was scared that he wouldn’t understand our closeness and how important it was to me to help you when I could. (My second husband definitely didn’t get it.) Once he figured it out though, not only did he understand why I was doing it, he actually joined in. He liked helping you.
He liked you.
Honestly, I don’t know anyone who didn’t.
I wonder sometimes if you know that he sang at your funeral?
Okay, there. I said it.
Your funeral.
I know I hadn’t mentioned that yet. I like writing this letter as if you’d be able to read it. I like to imagine just sending it to you in a Facebook message or something like we always did.
I look back over our messages sometimes. I can’t believe how much we talked! Everything that ever happened with our kids, we’d run it by each other. “Have you talked to Kelly today?” “How’s Jeff feeling today?” “Do the kids need anything?” “Are they okay?”
Until something is missing, I don’t think you can fully understand what a huge part of your life it was.
We had the opportunity that most people don’t get when they lose someone. We got the chance to say goodbye. We knew we were losing you. The hospital sent you home to be surrounded by your loved ones because they knew there was nothing left to be done.
For the last three months of your life, I lived with you part time. So many people didn’t understand that. Or, worse, they treated me like some kind of hero for being there for you. Honestly, it was a little embarrassing. I wasn’t doing anything for you that you wouldn’t do for me. We both know that. You needed help, and I helped you.
You passed away holding my hand. Do you know that? I felt like it was just you and me in the whole world. It was so silent. It was early in the morning and everyone else was taking their turns sleeping while it was my turn to sit by you. You hadn’t spoken for days but I continued to speak to you anyway. I had just been whispering in your ear what an amazing daddy you were and how grateful I was for every moment I had you in my life. Just as I finished telling you how sorry I was for all of the early tumult in our life together, your chest stopped moving.
It was just silence.
So much silence.
So many years earlier, you were holding my hand as our favorite people took their first breaths on this earth, so it seemed only fitting that I should hold yours as you took your last.
I was honored.
Do you know that?
I don’t know if you can still hear anything I say, but I just wanted to get this out. I wish you were here. I miss you.
I want to tell you so many things. Our kids get along now. Can you believe that!? After all of those years of thinking they’d hate each other forever, they have really helped each other through losing you. They spend a lot of time together. Jeff has even gotten Kelly watching basketball with him. I hear them both yelling at the refs. You’d love it.
In a way, they kind of remind me of me and you. They see the world in totally different ways sometimes, and boy can they fight like cats and dogs, but in the end – they love each other. And they’re there for each other when things get rough. They’re family.
Just like we were.
Like we’ll always be.
Wherever you are tonight, Kevin, I hope you know that your kids are okay. They really are. They miss you. And Father’s Day is going to be hard on them. It’ll be hard on all of us. But we’ll be okay. We have each other and we’re doing our best.
They are doing their best.
I’m doing my best. And, honestly, I have you to thank for that. You taught me how to love even through the hardest of times.
I’m a better person because I knew you.
You are missed. You are loved. And you are remembered.
Happy Father’s Day, my friend.
“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.
“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.
***
So, my birthday is coming up and Facebook has started doing its thing – asking if I want to ask for donations to a non-profit in honor of my birthday. And I think that’s a wonderful thing. I really do. But I decided I want to do something just a little different.
I know someone who could really use something that would brighten (and help) their life, and I want to see if you would consider helping me make it happen.
I want to get my ex-husband a car.
Now, I know that’s a strange statement. And it might even seem a little superficial. But let me explain.
My ex-husband, the father of my children, has a condition called Becker muscular dystrophy. One day (probably very soon) Kevin will be confined to a wheelchair for the rest of his life. He is defying the odds at the moment and is still able to walk very short distances, but because of the weakened muscles in his legs and now his upper body, he falls regularly. And when he falls, he is unable to get up on his own. This has, understandably, limited his ability to go places on his own. He can still drive – that’s not a problem yet. But his biggest problem is getting in and out of the vehicle without assistance. And since he doesn’t always have that assistance – and, thankfully, it’s not medically necessary just yet – he ends up just staying home a lot to avoid the trouble.
And that makes me sad.
We’ve talked about what could help him and the only thing he’s ever mentioned is wishing that he could own a vehicle that’s the “right height.”
Think about that. How often do you consider the “height” of your car? If you’re like me, the answer is never. But Kevin has to think about that constantly. He has to live his life according to whether he can get himself in and out of a vehicle. And the car he has right now just isn’t cutting it. It’s a regular size car, low to the ground, and he is getting increasingly unable to go places in it.
Now, if I were independently wealthy, I would love to just buy him a car that would meet his needs. But I’m not. And, living on minimal disability to get by, neither is he. So I’m asking for your help. For these last months (optimistically speaking, possibly a year or more?), I would like to see the father of my children able to still go out and do things without worrying about something as simple as whether or not he can get in and out of the car. He is not to the point where he needs a handicap accessible vehicle – though that time will come. For now, he just needs one at the right height. One that he can easily slide in and out of that is not too low to the ground.
We’re not asking for a brand-new vehicle. Just something that works. Something that will make just one aspect of his life a bit easier.
Will you help? Any small amount will do. If I can do anything to ease just one small burden of the man who loves my kids as much as I do, it would be my honor. Please join me in helping Kevin maneuver through his last days of mobility.
Thank you for considering my request.
Click HERE to donate.
MissyRambles 