I used to want to see the future. What do you do when it looks like a train going off the rails?
I’m impatient; I’d rather know how it all turns out so I can prepare for it. Don’t get me wrong. The train is running fine, the engine sounds normal. The tracks seem a little bumpy, but that’s probably normal too. The track’s been there for almost 48 years already. There’s no “Bridge Out” sign ahead and no one in the control room. But there’s a sharp curve coming and I don’t know what’s around it.
You know about my father and his battle with Lewy Body. I’ve written extensively on that struggle and it’s effect on the entire family. Sadly, within a year of his passing Alzheimer’s struck one of his siblings, steadily progressed, and robbed another branch of my family of the golden years with their father. In his case a sudden brain tumor took him over the course of 3 weeks. His Alzheimer’s only made discovering it harder.
Just to make it harder for everyone, just before his funeral his youngest daughter was diagnosed with breast cancer. She’s fighting it the way one does today, with chemo and such. She’s worked in the oncology department of Duke Medical Center. It gives her insight into the disease, perspective.
And then the trifecta struck. The last of my father’s line writes to tell me she has amyloidosis. It isn’t life threatening but it turns out to be a disease in the same family as Alzheimer’s and Lewy Body. While it doesn’t typically cause dementia, it is a folded protein disease.
Time to do the tally. Out of my father’s branch we have:
- Morgan 1: Lung cancer at age 37
- Morgan 2: Heart disease at 57
- Morgan 3: Lung cancer at 68
- Morgan 4: Heart attack at 52 and died of Lewy Body at 72
- Morgan 5: Alzheimer’s / Cancer at 72
- Morgan 6: Living
Of their children only my line has lost anyone. My oldest brother passed from a heart attack at 38. My youngest brother has had two of them and one stomach reduction. Thankfully he’s still with us. But it gives me pause. In the words of Violet in A Charlie Brown Christmas, “Oh no, we’re doomed.”
Before the FDA shut down the majority of their tests, 23andMe.com would take your DNA sample and tell you what disease markers you have in your genes. I’ve got two coworkers who got their results before the FDA halted the service and I’m kind of glad I was late to the party. Knowing you have a marker isn’t the same as having the disease and it’s not the same as knowing you’ll get the disease. Still, with the spectre of dementia looming over my future, not to mention cancer and heart disease, it brings pause to my long term plans.
Do I stop living for the future, just in case I have none? Should I start spending my savings now while I’m able to enjoy it? If 71 is the age when it all falls apart do I work hard for another decade and then slack off? The idea of sitting and waiting for the first tremors to start and forgetfulness to grow is oh so appealing. Overall the average age of death for us is now around 61, only 13 years. A pitiful span.
Seriously, though. It’s like this for people like me. I’m a planner and a preparer. I like to have some idea of what’s ahead, when I’m no longer in charge. When I finally cede it to my wife I need to know I’ve set aside things for her, for my son’s future. Some of it’s money in the form of insurance. The other stuff is my true legacy. It’s the pieces of me that make it possible to know the real Jeff, the one who spoke to you before you went to bed at night. The guy who sent you that funny text message. The one who held your hand or gave you a hug. That guy may end up gone, but his body stays behind and makes a general nuisance of himself.
Since dementia is the ogre in my rearview mirror, I have some ideas on how to help.
To help I plan on recording hours of video for my family. Some will be my bad advice like “don’t be angry at the puppy when she pees on the rug.” You peed on the rug when you were 2. Heck, I knew someone who peed herself in the back seat of a Chevy in the parking lot of a Def Leppard concert in 1987. Life is like that, always teaching.
I also plan on leaving videos just for me. Well, for my wife too. She’ll be tasked with the hardest part, dealing with me and my argumentative nature. I’ve no reason to think this will change when I lose my mind. I’m hoping to leave something for whenever I get agitated or confused. She’s supposed to get me to sit down beside a mirror with a tablet and watch.
Hello, Jeff. It’s me, you. Don’t believe me? Look in that mirror there. Ok? Good.
The strange woman who sat you down to watch this is your wife. She’s probably tired and sad and angry. Don’t be afraid of her; she remembers you when you were me. We read a book once about a leper. He was not a happy person but he said, and I paraphrase here, nothing is worse than being given back something you love, broken. He was speaking of his wife and how she handled his diagnosis. Thankfully we knew this time was coming and we prepared. Hopefully she isn’t struggling too badly.
You also have an amazing son who is doing great things right now, I’m sure. He’ll probably be by to see you later. He’s really tall so don’t be afraid of him when you see him. He loves you very much. He loves to hug so don’t be shocked if he wants to do that.
There might be a dog around you too. Maybe two. They love you in the way of dogs, totally and always. Yes, you like dogs. Some days it seems like your whole life stretches out behind you in a string of dogs.
Everything around you smells and feels familiar, but if it doesn’t just trust me. It’s all yours, earned through hard work and dedication. You spent years working through the pain and sadness of losing others you loved one by one to disease and suffering. You held each of them when it was possible. Helped them when you could. I don’t know if you’re a good man. Your wife thinks so. So do other people. But remember to always be the best man you can be. And even if you don’t recognize her, know that she recognizes you and you are safe. She’s also a great cook; ask her for cookies.
I’m really sorry this happened. It’s not your fault. It was those damn genes. And maybe the sugar. Who knows, but it doesn’t matter. What matters now is you’re still the rock, but surrounded by water, far from land. But the weather is nice most days. The breeze is cool, the sun is warm, and you made sure everyone was ok before the waters came.
Besides you have amazing VR now. Go back to being a jedi in the matrix for goodness sake. If your reality has to be warped it might as well be fun.