Wow! I didn't see that coming...

"Don't it always seem to go...you don't know what you got till it's gone."

          Joni Mitchell..."Big Yellow Taxi"

"Do not dwell on what you have lost.  Remember the miracles."

          Susan H. Porter

"...Aren't we all struggling to live with realities we would not choose?  Suffering in its simplest form comes in the space between what we thought would be and what is...Life defines us, but suffering redefines us.  Ultimately hope refines us, transforming us from within in ways we never could have imagined.

"But as we live in the world, as we suffer and grow, we experience things that bump against the boundaries of what has defined us thus far, that chip away at and redefine our borders, and that sometimes shatter the life we've known.  The real work, the hardest work, is to pick up the pieces and decide how to put them back together again.  The new thing that emerges may not work the way it used to, but it can bend and stretch and change us in ways we come to treasure even more.  As much as we recoil from suffering, it has the potential to show us who we are and who God is in ways that dramatically alter the way we live our lives.  We can gain precious wisdom and deeper appreciation for the lives we've been given as we learn to suffer well - not as victims, but as overcomers."

          Jay Wolf...from the book "Suffer Strong" written with his wife Katherine

I think we can all pretty much agree on a couple of "rules" of life...

#1.  Life is hard         #2.  All you can really count on is change.  We know these rules.  We've certainly experienced them in many, many ways.  And we know that life is intended to be this way.  But...it doesn't mean we like it when it happens to us.  Right?

May of 1986...thirty-five years ago.  I was thirty-two years old (yep, do the math.  I'm sixty-seven now.  Kinda old...)  I was working as a new store manager for Smith's, managing a remodeled store on the east bench of Salt Lake City, which was a great opportunity for me at that time.  I noticed that by the end of the day, after talking all day, my voice was getting hoarse.  It continued to get worse over a few weeks time, and finally reached a point of constant hoarseness.  So we went to a doctor, who referred us to an Ear, Nose, and Throat doctor at Pioneer Valley hospital.  He stuck a camera down my throat and announced that my left vocal chord wasn't working...just sitting there...and the right chord was tired of doing all the work when I talked.  And he explained to us there could be a number of reasons for this...MS, ALS, a tumor, cancer, etc.  And just after that diagnosis Marilyn and I spent a week in Hawaii to celebrate our tenth wedding anniversary...with that hanging over our heads.

To make a long story slightly shorter, when we got home we went to the University of Utah hospital, had a CT scan (which didn't show anything), then an MRI (which did).  A tumor, about the size of a golf ball, had been growing slowly in the left side of my head, on the Vagus nerve.  We learned that this is the main nerve going down the side of my head which controls all the nerves in my throat, vocal chords, tongue, etc.  So...that nerve wasn't working anymore because of the tumor, and my vocal chord wasn't working either.  Surgery was scheduled...it had to come out.  The surgery in July lasted about 8 1/2 hours, and Dr. Davis, the surgeon, basically "filleted" me open...cut my neck and my jaw so they could get to the tumor and remove it.  It came out in pieces, so it took longer than expected.

The night before the surgery I went into one of our children's bedrooms and prayed like I had never prayed before.  Amazing how that happens, right?  The best, most sincere prayer ever was uttered when I was really afraid and really desperate.  Kristen was only six years old and Adam was three, and I felt like we were just beginning our lives together as a family, and I wanted to be around for the rest of it.

After the surgery it was a week in the hospital, and I couldn't talk...I sounded just like Darth Vader...and couldn't eat much at all.  When I finally got home one of our neighbors brought over a huge meal, which was super thoughtful...I mean, it's what we do, right?...but I couldn't eat any of it.  I had to learn to swallow, to drink, and to talk again.  A second surgery was done in order to inject teflon in my left vocal chord to enlarge it so I could have a voice again.  It was difficult and I had to adjust to a new way of life, with a voice that wasn't very strong, that got tired easily by the end of the day, as well as being a very slow eater and having to be very conscious of every swallow so it didn't go down the wrong "tube" and end up in my lungs.  And that did happen with some frequency, which was no fun at all.  Choking on something I was eating was a daily occurrence for a long time...and it was scary as well.  When you can't breathe, it's no fun.  There were more than a few times when food was blocking my airway that I thought I wan't ever going to get that breath that I so desperately needed.  One night we were with some good friends at a restaurant having milk shakes when I laughed at a joke (something about two elephants...) right in the middle of a swallow.  Wrong thing to do!  I couldn't breathe, and the harder I tried the worse it got.  I stepped outside the door, and was trying to get air behind the milkshake to be able to cough it up and out, but just couldn't do it.  I'm gasping, eyes are watering, and I'm ready for someone to just stick a Bic pen in my throat so I could get some air.  Thought I was a dead man.  But finally I was able to get that breath, and I survived another day.

But...as the weeks and months and years passed the eating, swallowing, drinking became easier...never "normal", but easier...and my new voice became stronger and more consistent, although never great.  It was definitely a "new normal."  But it's amazing what we can live with and adapt to when we need to.  Life goes on...

So...fast forward to April of 2021.  On the sixteenth Marilyn and I celebrated my birthday spending some time together downtown and having lunch as Sugarhouse Bar-B-Que.  Sunday we had a family dinner and birthday party for me and our grandson Grandin.  Life was good, golf season was starting, and the summer months were just in front of us.  I wasn't feeling great Monday and Tuesday, and then Wednesday morning felt pretty crappy and was having a hard time breathing.  Marilyn sent me to the urgent care just up the street from our home, and they diagnosed me with pneumonia.  My oxygen level was only 84 (anything below 90 is no bueno), so I had a breathing treatment, a shot, and some prescriptions for antibiotics.  Went back the next day for a follow up, and felt much better over the weekend.  I worked Monday and Tuesday, and Wednesday morning we were leaving for a few days in St. George.  

Well, I woke up that morning feeling the same as the previous Wednesday, only worse.  I sat on the couch trying to talk myself into driving to St. George anyway, but just couldn't do it, and ended up at the Instacare at Riverton hospital.  I still had the pneumonia, my oxygen level was still 84, and all I wanted to do was sleep.  No energy at all.  The doctor changed antibiotics, gave me another breathing treatment, did a chest x-ray  and considered admitting me to the hospital, but didn't.  So once again I was feeling better over the weekend, but by Monday was low on energy again.  Tuesday at work I was feeling really awful, and about two o'clock called Marilyn.  I could barely hold my head up as I talked to her on the phone, and then went home and back to the hospital Instacare.  The pneumonia was still there, and I was sent over to the ER, and was admitted to the hospital.  The pneumonia was treated, but the question was "Why?"  Why wouldn't it get better and go away with the treatments and antibiotics? 

In the hospital I told the story of my previous surgery and that I had noticed an increasingly difficult time swallowing the last few months, and more episodes of aspirating my food.  So we did a swallowing test and an esophagram, both of which I failed spectacularly.  The bottom line was that as I have aged, so have the muscles in my throat.  They have been working overtime for many years, and are just kind of worn out, so my ability to swallow just isn't there anymore.  As a result of my aspirating food and drink, and adding to that reflux...my food coming back up because my throat just isn't working...the doctor said there was so much bacteria in my lungs they looked like a "cesspool."  Sounds lovely...  Even though we had been treating the pheumonia, every time I would go home and eat, it would just trigger a new episode with my lungs and I'd be back to the doctor.  

So I was given a liquid diet while in the hospital, and worked with a speech therapist on exercises to strengthen the muscles in my throat.  She also gave me instructions for a modified, high PH diet to follow at home.  I was going to be released to go home on Friday afternoon, and my release papers specified a liquid diet for the next two weeks.  By the time we left the hospital at five o'clock, I was hungry and angry.  I didn't want to be on a stupid liquid diet, and just wasn't happy...at all.  We got home, and fixed a little angel hair pasta with no sauce, and some yellow squash.  I ate some, not a lot, and went to bed about eleven...still not happy about the situation I was in.  Let's just say I was being very resistant...

I woke up suddenly at 2:30 in the morning and couldn't breathe.  Could not breathe...gasping for breath.  Marilyn got me in the car and she raced to the hospital, which at three in the morning was less than ten minutes away.  About half way there, as I was gasping and trying so hard to get some oxygen in me, I felt my head get light and dizzy, and had the distinct thought "I'm going to pass out and die right here."  But immediately after that thought I noticed that I was getting more oxygen...certainly not a lot, and I was still gasping for air, but there was a noticeable difference.  I guess I wasn't supposed to die right then...one of many miracles.

We walked into the ER, my lips were turning blue, and the nurses were trying not to freak out.  They hooked me up to five liters of oxygen right away, and when they checked my oxygen level it was only 71.  I ended up in an ER room, and it was so nice to finally be able to breathe with the oxygen.  Marilyn called Kristen, and about 45 minutes later her husband Shayn, with our son Adam, walked through the door to give me a priesthood blessing.  As members of the LDS church we believe in the blessing of the sick, using consecrated olive oil, by the authority and power of the Melchizedek priesthood...the same as in New Testament times and the early Christian church.  Adam's blessing was beautiful and inspired.  After they gave me a that blessing, I hugged Adam so tightly and just cried.  I told him I was scared, and I was.  I was completely frightened because now I didn't know what the answer was...how was I ever going to get better?  How was I going to eat?  How was I going to not repeat what had just happened?  I had a lot of questions and no answers.  Both Marilyn and I were scared...all I felt was fear and uncertainty.

I was admitted to the ICU so they could watch me a little more closely, was on oxygen 24 / 7, and wasn't eating anything other than an IV tube.  

All kinds of fun...and I still had no clue what the future held for me.  All I knew was that I was alive.  Living in the moment, right?  That's all I had.

Sunday morning Dr. Coil, who by the way is a really cool guy and great doctor, came into my room to talk.  He mentioned a feeding tube as a possible short term solution, but I asked him if that could be a long term solution.  He said yes, and in that moment I got emotional...trying not to cry...because I knew that was my answer.  

You can call it a revelation, an "ah ha moment", or whatever you like, but I knew deep inside, in that moment, that was my answer, and was what I was supposed to do. I then realized that Saturday morning had to happen because I needed to be humbled...to let go of my anger and my ego and be humble enough to accept the solution I was looking for.

 So the next morning I ended up in Radiology to have a nasal tube inserted temporarily, that would go past my stomach and into my small intestine.  They wanted nothing in my stomach because of the reflux possibility...stuff coming back up and into my lungs.  

Well, if you've never had the pleasure of having a tube run up your nose and down your throat, all the way to your colon, you're just missing out on some really exquisite pain!  I was crying...really crying.  When we were done I told the tech that if I was a spy I would have told him anything he wanted to know.  It was torture, and should be banned in all civilized countries! Well, just kidding.  Sort of.

So through this tube I able to pump specially made formula into me, and didn't have, or get to, eat any more.  An appointment was made at the hospital in Murray to have a permanent tube installed in my abdomen on May 17th...almost a month after this adventure began.  Of course, putting a tube down my throat wasn't the very best thing for my only working vocal chord, and my voice was destroyed.  Back to square one from thirty-five years ago...

By the time I got home from the hospital a second time, on Thursday, I was down twenty pounds.  Right now I'm down ten more.  This is a weight loss plan I would never recommend...  A couple of Home Health nurses came by to instruct us on how to use the tube, the formula, and the oxygen that followed me home, and we began a new normal without food.

On Monday the 17th I had the abdominal tube installed and the nasal tube removed.  Fortunately I was asleep when they took that thing out...I didn't want to be awake for that!  We were sent home a couple hours later after I woke up from the anesthesia, with really no instructions of what to do going forward.  The following five days were the worst of all...the pain of having a new hole in my stomach became intense, but not being able to swallow any medication, we didn't know what to do.  So I suffered and averaged about two hours of sleep a night for four nights.  

That was my "hell week."

Friday I had an appointment with a new family doctor, and she was super helpful.  We had a lot of new questions, and she said she would find the answers and have Ivy, her case manager, get back to us.  Their follow through was, and is, awesome, and we found out I could grind up some Tylenol, mix it with very warm water, and inject it with a syringe into my "gastric" portal in the feeding tube to relieve the pain.  It worked!

I met later with a pulmonologist...a lung and respiratory doctor...who checked out my lungs.  They were feeling much better by this time, and I check my oxygen level a couple of times a day.  Gotta keep that above ninety.  She agreed that my lungs had looked like a "cesspool", and told us that it would probably take six months for them to completely heal.  So we will go back to visit her in December for tests and another CT scan, and hopefully healthy lungs.

As I said, my voice was just a whisper, and I met with a speech therapist, a voice and swallowing therapist, and also met with an ENT doctor from University hospital about my voice.  It is slowly getting better and a little stronger, and there are some options to inject some more of "something" into that left vocal chord so they will work better.  There is hope.  But...Dr. Smith wanted me to have another MRI just to be sure the original tumor hasn't grown back and everything was clear in my skull.  Well, I had that MRI nine days ago and guess what?  The tumor has in fact grown back.  It's not very big, and probably (hopefully) benign, just like the original, and can't do any damage to my Vagus nerve, because it got severed in the original surgery.  But we have yet to talk to Dr. Smith about it, and don't yet know what our options are for that.  I would like to avoid surgery if possible...if it's only grown about a half an inch in thirty-five years, what's it going to do in the next fifteen or twenty?  Stay tuned...

Some days not being able to eat isn't too bad...we never have to make that tough choice about where we want to go to lunch or dinner.  We're saving all kinds of money at the grocery store and restaurants, and we haven't spent a dime at Baskin Robbins since April!  But, as you may imagine, it's hard too.  Not going to lunch together, or out to dinner with friends.  Not being able to eat at family dinners...just sitting at the table watching everyone else.  The social aspect of eating...well, anywhere.  Neighborhood Bar-B-Que's, church gatherings, lunch with the people at work, etc.  A hot dog at the golf course.  While Marilyn and I have never been "foodies", and eating for me has sometimes been more of a chore than anything else, this has been a huge change in lifestyle for us both.  Marilyn now is cooking for one, and eating by herself while I'm hooked up to my pump sending formula into me through a tube.  This has been as hard on her as it has been on me...the stuff she has been through with me and because of me!  When we got married she signed up for the "richer", the "poorer", and they should have included the "crappier"...because there's been plenty of that.  And yet, she's still here with me and we are going through all this together...And I love her so much more now than forty-five years ago when we were young and clueless just starting this journey.

Well...I've gone from a relatively healthy senior citizen to a guy who's visited multiple doctors, three hospitals, had two hospital stays, four total trips to the ER, and have more fun to come.  But I'm still here.  Life can flip in a hurry!  Honestly, last week was a tough one.  Although I understand, and believe in, the idea that we can choose how and what we feel...that we can intentionally choose peace, and joy, and love, and connection...I wasn't feeling that last week.  I was angry and I was hurt, and having a pretty good pity party in my head.  I was feeling the emotional pain of my situation, and I wanted to stay there.  Lynne always says that pain is our best teacher, and sometimes you just have to sit in the pain, acknowledge it, recognize it, and allow it to eventually go away.  And then I got a cold.  In July.  What?!  I was a miserable mess for a few days as I wallowed in my emotional and physical sickness.  But then I read a story about Susan H. Porter, who is serving as the first counselor in the Primary general presidency of our church.  A few years ago, in 2016, Susan's husband Bruce got sick while they were living in Russia, serving as a general authority seventy.  He was rushed to a hospital in Moscow with pheumonia, and then flown home to Salt Lake City, where he shortly passed away.  He was a good man, gone too soon.  As she was grieving, the Spirit told her "Do not dwell on what you have lost.  Remember the miracles."  Well,  when I read that it was a message for me...

In 1968 Joni Mitchell sang "Big Yellow Taxi", one of my favorite songs, and in the chorus it says "Don't it always seem to go...you don't know what you got till it's gone."  So when we lose something...for me now it's the ability to eat and swallow...and for some others it's much more...the ability to walk, or to talk, or the loss of a child, a spouse, or a parent.  The loss of a limb, or memory, or a career, or any numbers of things...but when we lose something it's usually something that we have taken for granted and that we have not really appreciated.  This has been a reminder for me to live in Gratitude...too choose it intentionally.  Every day.  I didn't see this coming, and we rarely do.  One day we can breathe, and then we can't.  One day we can eat, and then we can't.  One day we have our child, husband, wife, mom or dad, and then we don't.  One day we have a good job, and then we don't.  One day we're healthy, and then we're not.  Apparently nothing lasts forever.  Who knew?!  This is also a reminder that everything that is truly important is eternal...relationships, love, peace, connection, joy.  Everything else will eventually go away, and aren't as important as I think they are.  Our suffering is universal...we all experience it to some degree or another.  I could say that I didn't sign up for this, but in fact I did.  Life is a risky business, and while I know...from experience...that God is in the details of our lives, whether we want to recognize that or not,  He will not spare us the experience of pain and suffering and heartbreak.  Without it we will learn nothing.  And I believe that's a major reason for this life...to learn through experience, because there is no other way.  All I can do is to not focus on my loss, but to remember the miracles...and there have been miracles.  

Every person in the doctors' offices and in the hospitals has been a blessing in my life.  Their hard work, their schooling, their training, their sacrifice, their compassion, their friendliness, and their willingness to serve has blessed my life and allowed me to still be here, alive and breathing.  They are each a miracle.  I believe that we are each a spiritual being having a mortal experience here, and there are great things to come.  Heaven is not a place as much as it is relationships that will go on forever...relationships that are formed and grown here and now.  The miracle is the countless people...beginning with Marilyn and Kristen and Adam, and extending out to family, friends, neighbors, co-workers, church members I worship with, people in the recovery and ARP community, and so many others who love me, support me, and pray for my health and success.  Each of those people is a blessing and a relationship that can last forever...

One last thing...There are no accidents!  It was not an accident that I read the article about Susan Porter when I most needed it.  And it's not an accident that I discovered this book that I'm reading now..."Suffer Strong. How to Survive Anything by Redefining Everything" by Katherine and Jay Wolf.  These are two amazing and strong Christians...at the age of 26 Katherine, a new mother, suffered a brain stem stroke which left her unable to walk, talk, or eat.  And yet...thirteen years later her recovery has been a miracle.  But the biggest miracle is their attitude, faith, and resilience.  Their wisdom is deep and their service to other people with disabilities is a blessing in many, many lives.  I needed to know them and I needed their wisdom to bless my life, and to pull myself out of last week's funk.  

They write "...We can't control the outcomes in our past, present, or future, but we can decide what lessons we want to learn from them.  Our circumstances can look awful on the surface, but we can still have peace on the inside.  God is inviting us to not let our most visceral, animalistic side overwhelm us with anxiety over what's ahead because of pain and regrets over what's behind.  He's inviting us to pay attention to Him in our past stories so we can remember his presence in our future stories.

When this feels impossible, the antidote is always gratitude.  Gratitude changes our perspective; it begins to pull back the layers of loss and reveal goodness underneath it.  We need to grieve the hard story, yes.  We must take as long as we need.  But we need to let the redefined story be part of our grieving process, because it will also be part of our healing.  And there will be joy."

One of my favorite men, Elder Jeffrey Holland, has said that there will come a time, certainly not it this life, when we will see and understand that all our experience was for our good, and that it was all "fair."  I am hanging onto that.  We all must.  As in any mess we're in...whether we made it ourselves or not...all we can do is ask "What have I learned?"  I guess if we don't do that then maybe it was just a waste of time, and we really don't have time to waste.  I've been reminded of my mortality and the fact that I have a whole lot more to learn.  But most importantly I've been reminded that relationships...people...are most important.  And above all, I am grateful for that lesson...