A little backstory is required, for context:
I don’t think I’ve ever told this story in full. I’ve told bits and pieces of it, here and there. Like I’ve told people about “that” day. Or I’ve talked about some of the stuff that we did that summer. But I don’t think I’ve ever told the whole story from start to finish. So here it is. Every word is 100% true, although I have left some details out for privacy reasons.
Dad had 2 illnesses. Neither of which should have been terminal. Idiopathic thrombocytopenic purpura, henceforth known as ITP. A clotting disorder. His body didn’t make platelets like it should. And his immune system attacked the ones that did get made. And he had ankylosing spondylitis. A form of arthritis that causes spinal fusion among other complications. Again, neither should have been fatal. Debilitating, but survivable.
Keep in mind, both were also first diagnosed about 35 years ago. Right around the same time. And the number of treatment options were a lot smaller than they are today. It was like walking a balancing beam for Dad. The treatment for one could/would aggravate the other.
Mom couldn’t hang. I guess “in sickness and in health” didn’t mean much to her. She took my brother with her. I stayed with dad. I didn’t want him to be alone. So, from the time I was 10 until I was 19, it was just dad and me.
Fast forward to 1996. It was early in the year. February or March. I don’t remember exactly. It was a lifetime ago. I was 18. I’d gotten off work that afternoon and had a nasty headache when I got home. So, I laid down on the couch to doze off.
There was an unmistakable sense of urgency in Dad’s voice when he woke me up. He couldn’t explain exactly what was wrong, but he knew something wasn’t right. He knew he needed medical attention but couldn’t express why. That’s when I noticed the left side of his face wasn’t moving.
I did some quick mental math and decided I could get Dad to the hospital faster than an ambulance would even get to our house. I was a bit of a speed demon back then. And I had a decent enough car for it. I made it to the hospital in record time. I also know for a fact that I hit 100mph at one point.
The doctors run a whole battery of tests. Dad had a TIA (aka a mini stroke). He would recover fine, but they wanted to run some more tests. They admitted him, I stuck around for a few hours and went home.
The next day, after work, I headed back to the hospital. I was sitting there shooting the shit with Dad when the doctor finally came in to discus all the tests they’d run. The news wasn’t good.
Dad had plaque built up in his carotid artery, and probably others as well. The TIA had been caused by a small flake of said plaque dislodging and traveling into his brain. The plaque had most likely been caused by the cocktail of medications he’d been on.
In anybody else, it would have been relatively trivial to treat with blood thinners etc. But they couldn’t treat Dad that way. Because of the fucking ITP. Anything they might do to treat him was more likely to kill him.
Bottom line: Dad was a ticking timebomb. Eventually a large enough piece would break loose, cause a massive stroke, and kill him. It wasn’t if it was when. The doctor estimated 30 to 90 days.
That is a whole lot of an 18 year old kid to swallow. I was no stranger to death. I understood death as a natural part of life. I’d lost grandparents, a friend, a neighbor who was like an adopted grandparent, etc. But Dad? Dad was a badass. Dad couldn’t die. Dad took everything life threw at him like a boss.
Dad had a bit more of a realistic approach to the situation. Dad accepted that his time was almost up. But he wasn’t going to take it lying down. He wasn’t going to mope around the house waiting for death to take him. Fuck that. He was going out with a bang.
So, he swore me to secrecy, and we set about having the best summer ever. He didn’t want people to know just how close to the end we were. He wanted people to be themselves around him.
We sat down and made a list. A list of things we could reasonably cram into a short time, with the money we had available. Concerts, museums, etc. Everything was fair game. As long as it was fun.
But we didn’t “plan” most of it. Unless it required pre-purchased tickets. Beyond that, I’d get up on Saturday morning and dad would say “Let’s go do X today”. I worked Monday through Friday, but weekends we were on “dad time”. Things that we’d always put off saying things like “eh, I don’t really feel like driving 4 hours to do it” became “fuck it, let’s go”.
Chicago, St Louis, Indianapolis, didn’t matter. We’d just get in the car and go. The only place on the list we never made it to was Graceland in Memphis. But one of these days, I’ll go. And I’ll think about that summer.
I can’t even begin to list all the shit we did. Most of it we did without fanfare. Dad wanted to keep things quiet. But the highlights definitely include seeing Bob Seger, then like 2 weeks later seeing AC/DC. And my first beer with Dad.
It was at the AC/DC show. The middle of July. Ungodly hot at the Riverport Amphitheater in St Louis. An outdoor venue. It was Dad, 2 of his friends from when he could still work, and myself. I was designated driver.
Dad goes to get a beer between the opening act and the main show. He comes back holding 2, grinning like the cat that ate the canary. He hands me one. I’m sure the shocked expression on my face was comical. He leans in and says “It’s a rite of passage for a father to buy his son a beer. I probably won’t get a chance when you turn 21, so we’re bumping things up a bit.” It may have been an overpriced, semi warm beer in a shitty plastic cup. But it was liquid gold to me. The other 2 guys also partook in sneaking me a beer that night. But I was sober by the time the show was over.
The next morning, I was in the bathroom literally throwing up from the pain in my lower back. Dad convinced me to let him take me to the ER. A few hours later, I was introduced to the dangerous beauty that is Demerol. Kidney stones. At 18. The doctor said it might have been all the bouncing around at the concert the night before that knocked them loose. Or it could have been a coincidence Either way, it fucking sucked.
But it was a sign of things to come. Dad’s last hurrah was taking a toll on me. I was exhausted. Physically and emotionally. Combine the secrecy, the exhaustion, and some girlfriend drama and suddenly I was the one who was a ticking timebomb. But I was trying to stay strong for Dad. Because he always tried to stay strong for me. That is what men do, right? We stay stubbornly strong. Even when it is to our detriment.
I broke down. I stopped eating. A few crackers or some jello here and there. But that’s it. I didn’t know it at the time, I didn’t have the right words for it, but I was living in a nonstop 24/7 anxiety attack. Long story short, I ended up being admitted to the psychiatric ward. That’s where I was when dad died.
The day before dad died, he’d been admitted to the same hospital to undergo an (at the time) experimental treatment for his ITP. If it worked, they might be able to treat the plaque that was causing the TIAs. Which were still happening. Dad hid from me that they were happening more frequently.
I’m going to take moment to sidetrack. Hiding shit from people you love isn’t protecting them from the ugly reality. It is just making the ugliness worse when reality hits. Don’t hide shit from people. Be open and honest. It is better for everybody in the long run.
We now return you to your regularly scheduled whatever this is.
He had been admitted the day before they were scheduled to start the treatment for observation and pretreatment testing. Being a psychiatric patient, I wasn’t allowed off the floor without a member of hospital staff with me. This will be important later.
By this time, I had been a patient for about 3 weeks. That’s a long fucking time to be in the banana factory. But I was making progress. I was only a few days from going home according to my doctor.
But by this point the staff knew me and knew they could “trust” me not to do anything stupid. Now would be a good time to mention that the ward was a very secure environment. Only one door in or out. And no buzzer at the nurse’s station. It could only be opened with a key. And it was a beefy fucking door.
So, the evening Dad was admitted, one of the nurses took me down to see him. She dropped me off, for lack of a better term, while she took some paperwork to the records department. Or something like that. But it gave Dad and I half an hour or so to chat. We decided during that chat that when we were both home and feeling up to it, Graceland was our next target.
Keep in mind this was ’96. Smoking was a bad thing. But widespread bans weren’t really a thing yet. At least not on a legal level. This particular hospital had 1 room where patients could still smoke. A 10×10 room on the psychiatric ward. Dealing with lunatics is bad enough. Dealing with lunatics having nicotine withdrawal would be a nightmare.
As I was leaving with the nurse to go back, Dad asked me to smuggle him a cigarette when I came down to visit tomorrow. My last words to my father were “Fuck you, get your own cigarettes”. We both laughed. It was sort of a running joke between us.
The next day, September 24th, would be a day that changed my life. It was a pretty day. Or at least it looked like it from the hospital windows. My morning meeting with my doctor went well and we decided that I would be going home the following day. Just in time for my birthday on the 26th. I was eating again. The medications seemed to be working. Things were looking up.
The morning passed uneventfully. It was all routine at this point. Group from 9:00 to 10:00, free time until lunch, etc. I can’t for the life of me remember what they called it, but from 2:00 to 3:00 was essentially “arts and crafts” time. The bright spot of the day for me.
It happened during arts and crafts. A voice came over the intercom. A frantic voice. “CODE BLUE IN ROOM 210! CODE BLUE IN ROOM 210!” It took a few minutes to register. Hey, wait a minute, that is Dad’s room. So, I asked the therapist who was supervising us what a code blue was. Now, in the therapist’s defense, she couldn’t have known that was my father’s room or that he was even a patient. She was only there a couple of hours, 2 days a week. She offhandedly replies “That means a cardiac arrest. Someone’s heart stopped”.
I was out of the room like a shot, with the therapist calling behind me to come back. I got to the nurse’s station and the nurse asked what was wrong. I tried to form a sentence but the only words that came out were “code blue, Dad’s room”. Which prompted an entirely unprofessional but completely appropriate “Oh fuck” from the nurse.
There was a brief scramble. Everything was a blur for me. The next thing I’m aware of is being on an elevator with a nurse. She was my favorite nurse. She was an old black lady who didn’t take any shit from anybody but called everybody sugar, no matter how bad you were on her nerves. And she kept telling me “Sugar, everything is gonna be alright. Just breath for me Sugar. You’re doing good.” Trying to reassure me during the longest elevator ride of my life.
When we got to the 2nd floor, they ushered us into this tiny little room and said someone would come talk to me in a minute. My grandma was there. My family isn’t physically affectionate. Hugs are for special occasions. But I remember grandma giving me a bear hug that day. I thought she was going to snap my spine.
So, there I am in this uncomfortable fucking chair. Numb. I’ve got grandma in one ear and Nurse Sugar (sorry, that is what we’re calling her now) in the other. Both trying to reassure me. And I can’t tell either one that I knew this day was coming. I don’t know how long I sat there waiting. Locked inside my own brain.
Finally, a doctor comes in and shakes my numb hand. He tells me that they’ve been working on dad. But even if they did manage to bring him back, he’d be a vegetable. Not the doctor’s exact words but close enough. The hardest words I’ve ever had to say were when I told the doctor “Thank you but stop trying.”
Grandma was taken a bit aback. Ok, that might be an understatement. No, that is a major understatement. But she didn’t know what I knew. She wasn’t there when Dad and I had the conversation about it. She didn’t know that Dad didn’t want to be brought back.
Side note: Even if you are in perfect health, talk to your family about this shit. They need to know. Ya never know what might happen tomorrow.
Nurse Sugar eventually took me back up to the 7th flood. By the time we got back, word had spread. Everybody knew. Everybody was waiting for me to come back. Everybody was lining the long hall from the door to the nurse’s station. Lots of hugs and “I’m so sorrys” from patients and staff alike. And all I wanted to do was be alone for 5 minutes. But I knew their hearts were in the right place, so I endured. Even my doctor was there. He normally came in the mornings and went to his regular practice after. But he canceled an appointment to come in and sit down with me for a few minutes to make sure I was OK.
The afternoon/evening was a blur of phone calls. After 23 years, I can finally admit something. I called my best friend Sean first. Well, technically, I called his wife. He was at work. After I’d done that, then I started calling family etc. I called him before I even called my mom.
The visitation was on my birthday and we put him in ground the next morning. In typical Grandma Mueller fashion, my birthday did NOT go uncelebrated. There was German Chocolate cake (my favorite) and everything. I think that was her way of coping. Full speed ahead and damn the torpedoes, SOMETHING was going to be fucking normal.
I guess this is as good of a place as any to close it out. Is there some overall point? Some moral to the story? No, not really. Somebody asked me something on Twitter that made me realize I’d never told the full story in one place. So, I decided to fix that.
That is the story of the summer we said “Fuck it”
And, in the words of the legendary Paul Harvey, now you know the rest of the story….