Another Lap Around the Sun

As we move forward, I look in the rearview mirror, what do I see?

⁃ I see church people being the hands and feet of Christ. In real.tangible.immediate.ways.
⁃ I see an ICU nurse who still asks how I’m doing every time she sees my daughter, the pharmacy tech, at the hospital.
⁃ I see “not so random” acts of kindness that can never be repaid but will someday be paid forward.
⁃ I see many people who think they can “make it better” by saying something (Hint – you can’t – but more on that later)
⁃ I see many people who know that the best thing they can do is “sit with you” in your pain. Whether it’s pain over medical issues or pain/grief over the death of a Father or a combination of both. Those who just were there and said, “I hear you.” They are more valuable than gold.
⁃ I see the silent hug of a church friend in the church aisle while I walk back from an emotional communion service and feeling the pain of it all.
⁃ I see a society with a lot of hidden pain. There’s a lot of visible pain but there’s a large amount of hidden pain that people rarely allow out to see the light of day.

I could go on and on about all of the ways that I’ve seen God at work since then. Frankly, one of the ways I can see God at work is by the fact that I’m here.

We all have a story. This AVM has been a part of my story for the last 40 years. In many ways I didn’t truly appreciate how much of an impact it had on my story, how big of a part it is in my story. It has been woven throughout my story and yet in many ways it’s possible to see God working through it and impacting our lives.

I’ve mentioned it on here before, but the musician TobyMac shared a quote that has been extremely meaningful to me:

“God is still writing your story. Stop trying to steal the pen.”

In the last few days, I’ve told you a brief overview of some of the chapters of my life. I have been blessed beyond measure and those chapters do not define who I am.

The chapter called 2018 is one I don’t want to come back to, but I also believe that we’re going to eventually see that God uses the events in a way that we’ll look back and say, “Okay, God, I see……”

It’s one thing to know that, it’s another thing to wait and wait and wait for the answers.

It’s going to be an interesting journey.

TV

January 30, 2018 – A Day of Good and a Day of Struggle

It’s hard to believe it’s a year already.

It’s hard to believe it’s only a year.

It’s hard to believe it’s been a year since the doctors reduced my risk of a brain bleed
And for that I’m grateful

It’s hard to believe it’s been a year since the doctors greatly increased my opportunity to grow old with my wife. And for that I’m grateful.

It’s hard to believe it’s been a year that we’ve been dealing with the side effects that rarely ever happen. And for that I’m often frustrated, often disappointed, definitely closer to God and a lot more aware of the struggles other people face.

It’s hard to believe it’s been a year and I still feel like I’m getting used to living with “it.”

It’s hard to believe how incredibly complex and intertwined our brains and nervous system are. And for that I’m amazed at the God who created them.

I could go on and on but I won’t, at least not now.

On January 30, 2018, I went into the hospital to get the AVM in my neck and brain treated. I expected to be back on my feet and moving in at most a week or so.

When I came to in the recovery room, I could tell something wasn’t right. I was in a post anesthesia fog but as that cleared, a couple of things became obvious:
⁃ I could not hear anything out my left ear.
⁃ I had a nasty headache (something I’ve never had coming out of anesthesia before)
⁃ My throat was really sore. I mean really, really sore.

Over the next days and weeks, there became a growing realization that the problems weren’t temporary and weren’t going to go away – at least not soon and not on their own.

For a while, I could say that pretty much every week I felt better than I did the week before. Often it was small things but it was still improvement. About 3 to 4 months into the recovery, that pretty much stopped.

So where do I stand right now?
⁃ With approximately 40% of my hearing in left ear and that hearing is distorted so if I hear something only in my left ear, it sounds like Alvin and the Chipmunks.
⁃ Noise in my head. The technical term is tinnitus – I prefer to describe it as 3 hours at a Rolling Stones concert 10 ft from the speaker.
⁃ My left vocal cord, part of my throat and left side of my tongue are paralyzed. This gives me swallowing, speech clarity, speech volume and speech quantity issues.
⁃ Virtually non-stop headaches. I say virtually because I don’t know if they go away when I sleep. They vary in intensity depending on a lot of factors – mainly what I’m doing, how noisy, busy, visually distracting things are.
⁃ With eyes that are attempting to adjust to the “mixed signals” that they are getting.

I’ve got a great and very large team of medical people that I’m working with trying to get as much improvement as possible. But realistically, as we cross this one year mark, the odds of a major change lie less in modern medicine and more in God doing something outside of the scope of modern medicine.

Where does that leave me?
⁃ Grateful to be here. Pastor Darrell often says from the pulpit, “God woke you up and brought you here for a reason. Let’s figure out why.”
⁃ Grateful for my wife – you know that “for better or for worse, in sickness and in health” part of marriage vows? Yeah, that’s her. I wouldn’t be here without her.
⁃ Grateful for the kindness and the prayers of people known and people not known.

January 30. I don’t think I’ll ever look at that date the same again. Much was lost on that day. But much was also gained. I have learned to see the battle between the devil pushing the “much was lost” attitude and Jesus pushing the “much was gained” attitude.

God is at work.

Jesus hasn’t finished writing our stories. Not yours. Not mine.

On January 30, he turned a page. A lot of the next page I can’t read yet.

But I know he’s got the pen.

TV

The Clock Moves Forward to 2009

Okay, we went from 1986 to 2009 without a problem, that’s a good thing, right? Well, yes and no. Yes it is in that the AVM did not “reform” in a way where doing something was riskier than doing nothing. And no because some of the symptoms – sore neck, shoulder pain, ear issues were still there and gradually getting worse.

In 2009, it felt like I pulled a muscle or pinched a nerve in my shoulder, went to the doctor, did physical therapy, and it kept getting worse not better. So we ran the tests that confirmed that it was a vessel from the AVM pushing on a nerve in my shoulder. Once we realized that, it did not take long for the doctors here to say, “back to Mayo with you.”

So, we go back to Mayo and they run some more tests and look at things and they said, “we can do this.” The plan was to plug up some other small veins to change the blood flow so that it isn’t pushing on the nerve any more. I distinctly remember coming out of the post-procedure fog and saying, “I feel better already.”

So back to a busy life. There was always that “storm cloud” on the other side of the horizon – you couldn’t see it, but the radar said it was there and it was potentially a problem that could come your way. But most of the time, you didn’t give it much thought.

Until 2014 when it started to rain. Not rain a lot, just a slow steady drizzle. I started having some hearing issues. And some sensory issues on the left side of my tongue. On the bright side, it never hurts to get a flu shot – the upper part of my left arm is numb. Never feel a thing.

It was a slow gradual thing, so it’s harder to judge what happened when, but by the second half of 2017, it was determined that the risks of waiting and doing nothing were less than the risks of doing something.

What were the risks? The risks of waiting were basically two very simple but nasty ones – brain bleed or stroke. The outcome of either one of those would most likely be bad, very bad.

So the decision was made to do an Embolization. What’s that? It’s basically where the doctors use small coils and super glue to plug up the blood vessels that are a problem. Oh and somehow they manage to do it from an artery in your leg. Yeah, go figure.

I’ve had numerous of those procedures done over the last 40 years, I really wasn’t that nervous about it. The medical team left us feeling very confident that this would go well and with a couple of days off, I’d be back at it.

If this were the script to a movie, about now is when they’d play the ominous, scary music……

TJV

Jump Forward by Jumping Backward

So, I told you about this “thing.” This AVM thing, this strange blood vessel thing. This thing that I had to go to Mayo Clinic to get taken care of because no one around West Michigan knew what it was. Let that sink in for a second……

You’re in 8th grade.

You live near the second largest hospital in the state of Michigan.

And.

They.

Don’t.

Know.

What’s.

Wrong.

With.

Me.

I honestly don’t think, for many years, that I ever really came to grips with the emotional toll that this blood vessel “problem” took on me. But we’ll talk about that more later.

Now I want to jump from 1978 to 1986. Once again, we had reached the tipping point where doing nothing (meaning just watching things) was more risky than actually treating it. And guess what, the doctors in West Michigan said, “It’s different this time.”

Word of warning – if anyone ever says, “it’s different this time,” be afraid.

Be very afraid.

They mapped out a plan where they were going to go in and basically plug up some of these extra blood vessels – a little at a time – over the course of 6 sessions – one per month. Now mind you, when they plug up these little blood vessels, sometimes they are blood vessels that really don’t go anywhere so it’s sort of like putting a road block at the end of a cul-de-sac. So what?

Some of them do go somewhere and when you cut off blood flow to muscles, well, Mr. Muscle ain’t very happy.

Let’s just say that there’s more than one reason I can’t hit a golf ball nearly as far now as I did back before 1986. Each of those 6 sessions was very painful.

But there were two that were special. There’s one where, if I hadn’t been able to hear the doctors shouting at me, I would have thought I was going to die. Honestly. Here’s what happened. The way that they did these sessions was by going up through an artery in my leg and going all the way up to my neck. Well, something happened and normally they would put a small drop of a local anesthetic in before the “super glue” to make it a little less painful. Well, there was a drop of it that had a mind of its own. And that mind of its own wanted to go on a tour of my mind. Suddenly, my world was turning bright green and it sounded like a freight train was running right through the middle of my head. Yeah, probably one of the scariest situations I’ve ever been in. I don’t know whether it was 10 seconds or a minute or how long but it calmed back down and I was fine – but I was extremely exhausted for the next couple of weeks.

I don’t remember if it was the next one or the one after that, but we were back for another session and we had another problem. They would use coils/springs to help the super glue plug up the blood vessels. One of those springs got stuck halfway in and half way out of the tube they were using to insert it. It was stuck.

So rather than a “yucky” outpatient procedure, I ended up with major inpatient surgery and they had to essentially go chasing that coil more than halfway down my leg. Not a good thing. When I went in, I expected it would be a couple of days off, I ended up with 3 weeks off and totally wiped out from it. Not what I had planned at all.

After some hard discussions with the doctors here and doctors in other places around the country, we ended up flying to San Diego to spend some time with Dr. Charles Kerber. He finished up what the doctors here in West Michigan started.

Now I will be the first to admit that I am carrying too many pounds around, 20 years in the banking world and 5 kids don’t help a stress eating habit, but when this whole process was done, I weighed over 100 lbs less than I do now.

I need to lose weight. But not that much weight.

But we finished this up shortly before March 24, 1987. What’s so special about that date? That’s the date that I became a dad.

I’ll probably say more about that later.

For now I’ll just say that being a dad has been a blessing, a challenge and everything in between. I am proud of all 5 of my kids and the unique individuals they are. I love them all dearly.

TJV

So, you see, there’s this thing…..

(Putting aside the Haiti part of the story and moving to other things)

It’s a thing I’ve known about for 40 years. If you’re counting, that was when I was in 8th grade.

When it was first found that I had “this thing,” really no one in our area of Michigan knew what it was. So we had to go to other places, other parts of the country to find people who knew what it was and how to deal with it.

This “thing” is called an Arterio-Venous malformation. What does that mean? Google
AVM if you really want to know the details of what it is. But here’s the short version of it. There is basically a four lane highway of blood vessels between your heart and your brain. One way carries oxygen to your brain, the other way carries blood from your brain back to your heart.

An AVM is when there are a lot of little vessels running back and forth between the two. They are sort of like the “turn arounds” that are on the highway. I find it kind of ironic that the best example of what an AVM is are gravel roads that say, “Authorized personnel only.”

So what is an AVM? Or more accurately, what difference does an AVM make? In a worst case scenario, an AVM – or more accurately – one or more of the blood vessels (the turnarounds) could rupture and that would be a bad thing. A really bad thing.

The more common symptoms have to do with blood vessels and pressure on nerves. Depending on where those nerves go, it can cause a wide range of different symptoms. Tremors, hearing loss, headaches, vision loss are just some of the type of symptoms that people with AVMs might have to deal with. Oh and it is possible to have an AVM for almost your entire life and never have any symptoms.

Where do these AVMs show up? They can be pretty much anywhere in the body, but they are most commonly known to be in the head and neck because that is where they are most likely to cause the most problems and do the most damage. There are most likely a lot of AVMs in arms and legs that never get noticed and never bother someone.

So, I’ve got one of those things. It first showed up just above my collar bone in my left neck and shoulder. In 8th grade, I ended up having to go to Mayo Clinic (the closest and one of the only places in the country who knew what an AVM was, let alone how to deal with it.) Depending on whether you ask my mom or my dad, it was either a 6 or an 11 hour surgery where they went in and…….. Oh, wait you probably don’t want to know the details of that.

I came home, recovered and went back to life as normal. That was 8th grade, in 11th grade, I met this girl, fell in love and she’s still the best thing that ever happened to me.

I wish I could say that my story with this “thing,” this AVM thing, is done as of 1978. It’s not.

1986

2009

And now 2018

Additional chapters of the story. The story that hasn’t been completely written.