Friends and family…

Once more into the fire, and tomorrow the answers start showing up… did we find the right nerve? Will fusion be the fix? Will I get my life back? Those are the operative questions, see what I did there?

None of this would be happening without Kim, who told me from the beginning that he was going to keep looking for whatever would stop the pain. I was 57 when he married me, skeletal from grief anorexia and fried from years of caregiving and loss, but still a house afire and totally into living life. Fast-forward to 2021 and increased degeneration from the accident I told you about… https://playingfortimeblog.com/2021/10/04/a-fractured-fairytale/ … has nearly immobilized me, so it’s gradually become a fact of life to be dealt with… will I stay on my own two feet, or is that becoming history?

It’s been a long time getting here, but fifty years after I first became acquainted with intractable nerve pain, we “know a guy.” There’ve been a lot of starts and stops along the way, most of them total dead-ends, but from here to Wichita to Scottsdale and points between we’ve checked out information and leads and promises and guesses, and it’s always been “We think this could help… we can try this procedure… welp… we tried.” A senior-staff spine surgeon, without so much as sitting down or making eye contact, told me in 2018 that nothing could be done to upgrade the state of my spine, so I came home with something settled in me that said “Don’t bother exercising, it only ramps up the pain.” That wasn’t a conscious decision, but the psyche is a powerful and mysterious universe and knows how to shut us down.

This fall, with things clearly falling apart in the pillar that holds me upright, Kim raised the ante and went in search of any helpful information available. A PickleBall friend told him about his wife, my age, who had robotic-assisted spinal surgery in Kansas City and is walking again without pain. Another PickleBall buddy told us about her own friend, my age, who had yet another KC surgeon do the same surgery, with similar positive results.

Boys and girls, medical robotics have arrived in the heartland and the Young Turks are on it. A primary factor in our move to Lawrence was the stellar medical community here and in next-door Kansas City, and that’s been proven wise over and over. We’ve had critical need for their gifts many times in the eight years we’ve lived in this Kansas cocoon, and nobody has disappointed us so far. And before we’d even settled in, Kim started making himself part of the neighborhood, the community… local… bringing us now to a personable young surgeon with a shiny resumé who knows how to “fix it.”

So tomorrow we’re going to fix it. Please keep a good thought.

Not this part…
not this part…
not even the trainwreck in the middle, just one key spot.

The x-rays are this side of obscene, but the amazing fact is that I stand straight… I just can’t keep moving for more than a few minutes.

Before they bring in the Happy Juice, I’m saying thank you to the guy who got me here, because it wouldn’t have happened without him. However this turns out, he never gave up the quest. When he married me I was under a hundred pounds, brown as a bean, and vibrating with life. Seventeen years later I’m over a hundred pounds, white from lack of sun, nearly deaf, evading seizures every chance I get, and on the cusp of living out my days on a Jazzy. Not sure why I’m even still hanging around, but the heartfelt hope is that after tomorrow it will start getting less tricky by the day to be here.

This isn’t the first time the KIMN8R has saved my life. He’s the cook who brought me back from the edge when we met, and he’s fed me irresistible food every day for all these years. He keeps me laughing, makes sure the adventure doesn’t end, holds me when I cry (a lot), lets me be me, end of story… and he believes in me. From the moment we met, it was going to be him or no one (I said no one, but never tempt fate), and against all odds he’s kept me putting one foot in front of the other.

While preemptively fighting my battles for me, he’s had his own challenges since January 2021, including 45 radiation treatments for an aggressive form of cancer, followed by months of other therapies and protocols, ongoing in 2022. He aced the radiation and went on to double his exercise quotient in order to maintain his conditioning for putting up with me… a job he says he was born to, and he’s so right. He’s at fighting weight and I couldn’t be more fortunate to have him as my cornerman. For six years he helped nurture Robert’s mother in her 90s and made her days far more interesting, fun, and lifegiving than if it had been just me all the time. He didn’t get to do that for his own family and he values it above price. In my world he’s The Guy for all the things.

In the current atmosphere, with relationships coming apart all around us, I remember people who watched two wounded human beings find love and happiness and said “I give it six months.” Have any of them ever felt a twinge over their cynicism, I wonder? Doesn’t matter…

I’m not sure most of #lfk knows Kim Smith has a wife since he’s always by himself, so I’m ready to get past tomorrow, and the three months after that, and whatever after that… and get out there with my ol’ man again.

Let’s do this.

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Fixing myself on my own …

whole world

No part of my world seems to be coming undone today, but in past days, weeks, months when it has been, writing it down has saved me.  If I can tell myself what happened, life loses its power to put me under.  When you’re broken, it’s good to know where the glue is.   

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Challenges …

So have you done the ALS Ice Bucket challenge?  The videos I’ve watched are entertaining and attention-grabbing, which of course was the aim, and suddenly a little-talked-about disease is receiving the big focus and funding necessary for ramping up the research.  A diagnosis of ALS is a death sentence, regardless of age or station in life, so a cure would be a godsend. The conversation is in full bloom around the country, as intended.  We can’t really address things we have never faced, don’t know about, or are afraid to discuss.

Concurrent with the ALS wave, the death of a much-loved entertainer has sparked a dialogue on the realities of clinical depression and suicide, with far different results.  The ugly, willfully ignorant comments on social media have been crushing.  If a friend confided in you that he or she had received a diagnosis of Stage 4 cancer and had only a short time to live, would your response be something like “Wow, dude, that sucks.  But hey, quit whining.  Chin up!  Everybody has troubles.  Keep a good attitude, get out and enjoy life, it’s bound to turn things around.  You’ll feel better before you know it!”  If you say yes, I call bullshit.

I’ve seen a few negative comments about the ALS challenge — it wastes water (give me a break — your twenty-minute showers and ice chests full of beer are all totally justified, I suppose); it’s stupid and juvenile (but painting your face and body for a sports event, or wearing a block of cheese on your head isn’t); I don’t see the point (of course you don’t, it’s under your hat). But the response has been predominantly positive and lighthearted, and it’s fun to watch.

The conversation about depression and suicide is an entirely different story.  It’s a fact of life that our bodies get sick and die — it happens right in front of us so there’s no denying it.  But you could talk and type all you want and way too many people will still never comprehend that our brains and psyches get sick, too.  If you wouldn’t shame someone for having cancer or suffering a brain hemorrhage or getting hit by a drunk driver, why would you use shame as a tool against illnesses and injuries of the spirit?  And who the hell are YOU to do that in the first place?

Here’s an actual example of the complete nonsense being posted:

“The fact still remains he (Robin Williams) killed himself because he made bad choices in his life … society is only making a big deal out of him because of who he was and his money.  Wealth comes with challenges.  Depression is one of them.  … A person’s stature in society shouldn’t make them any more important than anyone else. … Seek out help.  It is out there but you have to lose your pride to find that help.  Don’t be a coward and take the easy way out.  Listen to the voice inside you that tells you right from wrong.  Don’t try to tune it out or you will be in for a rough time.”

What a steaming pile of panther whangy.*  If you don’t know what you’re talking about you’d be smart to shut your pie hole.  I’ve never been clinically depressed, I’ve just been hit with garden variety blues from time to time, but I’ve watched beloved family members suffer and die from it, so I’m here to tell you:

1)  Clinical depression is not caused by “bad choices.”

2)  The conversation is not really about Robin Williams, except that his life perfectly illustrates how deadly the disease is.  He had it all, but money, wealth, and fame do not in any way make a person immune to a disease of the brain and spirit.

3)   I haven’t seen anyone express the view that Mr. Williams was “more important than anyone else.”  His high-profile death and the fact that he was loved by so many people have simply generated a national conversation that needed to take place.

4)  “Losing your pride” has little bearing on seeking help.  A person lost in the dark tunnel of clinically-depressive illness is mostly incapable of reaching out.  I’ve been told by people who’ve been there and survived it that it’s hard to even hear other voices or entertain possible options — for them, they’re in the process of dying and it takes everything they’ve got just to hang on.  Robin Williams DID seek help, and had been treated for depression for years, but just as with cancer, a “cure” was not easily come by.  Complicating matters, anxiety and depression are clinical symptoms of Parkinson’s, which he was also dealing with.

5)  Rather than being “cowardly” and “taking the easy way out,” a person in the throes of the illness finally succumbs to the relentless pain and suffering, concludes that the world would be far better off without him, and exercises the only option that seems to be left.

6)  “Right from wrong.”  What an incredibly judgmental thing to put on someone.  If you’ve never been in that long dark tunnel, hating yourself for who you think you are and what you believe you’re doing to your loved ones by simply being you, then you need to SHUT UP.

7)  “Don’t try to tune it out or you will be in for a rough time.”  If people with clinical depression could “tune it out,” they’d do it in a heartbeat.  And as for a “rough time,” it’s clear that you care very little about what they’re going through, so DO.PLEASE.SHUT.UP.

No one is immune to mental illness, so it would be in your best interest to stay off the soapbox.  Many people are born with a genetic predisposition to any number of spiritual and mental illnesses, and all the arrogance and condescension in the world won’t change that — that attitude just lets people feel better about themselves because it didn’t happen to them.

If you’ve been spared from the disease of depression, why not adopt the approach of the ALS people and do something to help raise awareness.  I just did.

 

*with appreciation to Philip Grecian

 

 

clinical-depression-treatment

Staying in the swim …

We’ve recently changed up our exercise routine because Kim needs to rest his ankle and shoulder, so he’s off the racquetball court and I’m out of Aqua Zumba for now.  Instead we’re swimming laps in the early mornings.  Our spring/summer schedule filled up when we weren’t paying attention, so the earlier start every day has been a good thing, and Kim’s owies are starting to like the new regimen.

One of my last class sessions was something I’m glad I didn’t miss — you can’t prepare for serendipities, you just have to be lucky enough to notice all the little nudges that take you through your days in style.

Okay, I need to tell you that when John was just out of college and starting his first career, he got involved with an organization that provided a social life for developmentally-challenged young adults.  His stories were funny and endearing, and it was clear right away that he had a gift for what he was doing.  He eventually went on to exchange his design career for one as an oncology RN, and he’s not only really good at that, his tenderness for his first clients has stayed with me.

So there was a morning a while back when I’d almost skipped Zumba class … again.  But hey, I showed up.  I was in the water warming up when the door opened and a young guy with killer abs walked in, followed by several men of mostly indeterminate age and clearly working under challenges of various sorts.  Nice Ab Guy asked if this was Zumba class and I said yes.  He asked the instructor if it would be okay for them to work out with us and she said of course!  So he helped the other guys tighten their waistband drawstrings, finessed ear and nose plugs, and coaxed them into the shallow end of the pool.  They were none too sure about the whole thing, but their shy smiles were to die for.  The eldest had scars over his back and arms that looked like severe burn damage and I prayed that some inferior human creature hadn’t hurt him on purpose.

The music cranked up, loud as always, and the new guys, with encouragement from a dozen or more mamas, got into it.  Ab Man was born to dance, and obviously to help people who need him.  The sweet guy with the burn scars was so sincere and earnest about trying to keep up with the moves, I had to put my face in the water to camo the tears.  One young guy spent his time looking around, blowing bubbles, and making the water splash big.   He may have had the best time of anyone.  Every glance at one of us asked “Is this okay?  Can I do this?”  When class ended we all told them to be sure and come back, but that didn’t happen before I dropped out.  I hope they remember their time with us as one of the really good days.

I’m lazy and whiny and it’s almost second nature for me to pick the easy way if there is one.  Those guys’ lives are hard in ways I’ll never experience, but they keep going and they’re as stoic as anyone I’ve ever seen.  I hope the people they encounter will be unfailingly kind to them and that even though they’ve been burned by life they’ll never lose those shy sweet smiles and their willingness to be and do and keep on giving.  I have no right to even ask that … but there’s so much they can teach the rest of us and we need them.

 

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