I might not have degenerative dementia. That’s not as comforting as the doctor telling me that I definitely don’t have degenerative dementia, because what he’s really saying is that I might actually have it. He’s saying that because I have symptoms of degenerative dementia.
As a full-time author, as a creative person, as a husband, as a father, and simply as a human being, I find this prospect troubling for a lot of reasons
My Story
We all suffer from something. Almost every religion and philosophical tradition has some version of that truth baked into its framework.
I’ve never been a fan of comparative suffering. People have a tendency to belittle what they are going through because they see someone else going through something worse, someone who seems to be handling their troubles better. It’s fine to take inspiration from that, but it’s less healthy to feel bad about yourself for feeling bad, like you’re not allowed to feel bad when you’re going through something. Comparing ourselves to others, whether it comes to our accomplishments or our struggles, is a losing game. We all come out feeling defeated. So, let’s approach this discussion from the standpoint that we all suffer from something, therefore we are all in this together. Let’s find our way forward together.
When I was a kid, my father was heavy-handed and did not handle his anger or frustration well. Correction in my father’s house was often explosive, and regularly came with a closed fist. Later in my life, as I started having seizures, memory issues, and confusion, the question came up as to whether I had any childhood head injuries. I didn’t have to look far for the answer. My dad just hit me in the head too many times for me to come out of it unscathed, no matter how much forgiveness or letting go I might try to employ.
I also inherited polycystic kidney disease from my father, who got it from his mother. It is a genetic disorder that gradually, over decades leads to kidney failure. In 2017, I received a life-saving and life-changing transplant. My worst day beats the hell out of my best day with kidney failure. But it is a treatment, not a cure. One day, my transplant kidney will fail, and I might end up on dialysis like my grandmother, my father, and my brother, who all died that way. Some of the medications I take to avoid rejecting my transplant kidney bring forward some of the cognitive difficulties I’ve been having.
During all of this, I was writing. I was writing stories and articles and selling them for money. I became a full-time author and eked out a living through the written word. We all suffer from something, and that suffering can’t help but define us and our path a little.
I started having seizures and had to go on medication for that. The medication has held the seizures at bay, but they add to the mental cloudiness that punctuates my most central problem.
The problem is bigger, though. I am prone to mental confusion. It’s easier to hide when I’m at home, which with the pandemic and me being home a lot masked how bad the problem was getting for a while. When I’m away from home on a foggy mental day, I can become unanchored. That’s my word for how it feels. I don’t remember how I got to where I am, and I don’t know how to get back to where I think I’m going. Sometimes I can convince myself not to move and to just wait for someone to find me or help me. Sometimes I start to wander, looking for anything familiar or trying to get away from that feeling of being disconnected from everything including myself.
I wear a tracking device so my loved ones can find me if and when I wander. I no longer drive because I do not recognize the roads and I can’t guarantee I won’t have a seizure. I have to get help with microwave dinners because I can’t keep track of multiple steps when they are presented in a sequence. I’ll catch myself staring at a wall and realize more time has passed than I realize. Processes I used to do with success started to produce less and less success for me.
But I still write.
My Reaction
I haven't always been the most positive person throughout my life. I had trouble controlling my anger like my father. Unlike him, I never took it out on my family, at least not physically. Still, being my wife or son was never the easiest assignment, I think. I came with a lot of baggage. Earlier in my life, I was more antagonist, bitter, dark, and negative. I covered a lot of it with being funny and hiding what I was going through. I lied about a lot of the danger I was in as a kid, because being truthful and vulnerable in a way that shattered people’s image of my respected father was a risky gamble. It seemed safer to suffer through and pretend to be normal.
When I was going through kidney failure and heading toward transplant, I made the choice to be more grateful. It wasn’t a huge decision to be more Zen, but rather a survival technique to keep myself going when physically, mentally, and emotionally I was spent. It allowed me to see small victories I would have missed otherwise. I could use those small victories to build toward bigger victories in what often felt like a hopeless struggle.
If I could go back and erase kidney failure from my life’s story, I wouldn’t do it. I love the life I am living now with all its struggles and setbacks. I would not have some of the character qualities that allow me to successfully face hardship now. I wouldn’t be as kind. I wouldn’t be as good of a husband, father, or friend. I still have a long way to go on those fronts, but I’d be nowhere if not for the lessons I learned through suffering. In my youth, the smallest setbacks would undo me. That’s not uncommon for people going through abuse, I think. Where I am now, I’m living my dream as a full-time writer. I’m not sure I would have made that leap if facing my own mortality hadn’t made me reevaluate my whole life.
When I went through kidney failure, I had to turn to others for help. I couldn’t hide the struggles I was going through. And what I found was that truth we discussed earlier: everyone suffers from something. Most of us try to hide it, especially in the social media age of projecting perfect lives. We tend to hide our suffering because we don’t want to be the one always complaining. We think we are a burden to our friends. We feel shame that we don’t have our lives together the way everyone else seems to. We hide our needs from our family and friends. We pretend we are perfect and our families are perfect when the truth is we are all broken. But that does not mean we are objects of pity, shame, or unworthiness.
As I shared my struggles, it opened up a flood of people reaching out to say they were struggling too, and all this time they thought they were alone. Friends and strangers reached out to comfort and help me. They reached out because they needed a connection with someone who could say, you don’t walk this dark path alone. I’m here too. Let’s walk together for a while and see if we can find our way out.
Now, I’m reevaluating my life again as the prospect of possibly facing degenerative dementia changes the weight of priorities upon the scale. If I don’t sort through what’s important to me, my cognitive impairments will eventually do that for me.
My Writing
Writing is an odd calling. In terms of a living, you’re not quite a professional athlete or a rock star, but financial success in writing is closer to those level of odds than it is to teaching or selling insurance. Yet, people still go for it. We pursue the long odds of writing something that gets people’s attention or leaves a mark on the world.
When I was writing full time while in full kidney failure, I was sometimes producing 10k or 12k words a day because most of my income came from ghostwriting. I paid the rent and our bills from that income.
After transplant, I couldn’t do those kind of numbers anymore. I don’t know how I did them then. I closed out business with all my ghostwriting and freelance clients before surgery and told them I couldn’t start back after. They came back and I said no. I wasn’t writing every day and wasn’t writing most days some weeks. They came back and offered more money. I said no again and again. After about a year and a half of working with other people, some of them came back with an offer of a lot more money. My medications are expensive so I said yes to the highest numbers from the easiest clients to work with. I had to hide how much more difficult that writing was for me, but I was doing less work for more money, so that helped.
In the meantime, my own writing in my own name started to earn me more money, even with raised rates on ghostwriting. I started seeing some increases in my results with Amazon ads, so much so that people started coming to me to ask about how it worked. Even as the pandemic started in 2020, I had some of my biggest months of sales ever. Over time, my success with those ads slipped and I struggled to figure out how to adjust them like I’d been able to in the past. The data started to make less and less sense to me. Eventually, I froze all my ads to evaluate what I was missing. It turned out what I was missing was the fact I was having more severe cognitive impairments than I realized at the time.
I found success on Twitch. I found a small niche for writers livestreaming their work. I discovered my unique offerings for the platform, and I started making consistent money with it. It wasn’t a lot, but it was building. As I started to experience more cloudy days, I would cancel streams and wait for a clearer mental day to try again. As I approached the end of the month recently, I looked back at my analytics and realized I had only streamed four times that month. Before now, I was streaming four times in a week. The work I do on Twitch is something I’m proud of, so I’m going to prioritize it over other things going forward.
I sat down and started eliminating projects from my list of things to do. Some I rescheduled as possible projects for future years, even knowing that was less and less sure as time goes on. Some I let go entirely because I couldn’t do everything well. That’s true of everyone, but it is true on a different level when dealing with a specific disability.
My Workarounds
I still write, but I had to develop workarounds to deal with the barriers my cognitive impairments put up. Some days they work better than others. Whether you are writing with cognitive impairments or not, these might help you on days you’re struggling.
• Routine
For healthy people, sometimes changing location is a good way to break out of a rut. For writers dealing with cognitive impairment, routine and repetition may be a better approach. On my cloudy days, if I start writing, I open up pathways that I’ve practiced for a while. I’m sometimes clearer writing than with other activities. If the trick is opening those pathways again, then working in a familiar place with routines you’ve already established facilitates that process.
• Break the page
Related to the point above, sometimes you have to just get going to get into that mode. “Break the page” for me means start from wherever I am in the word document and write until the words break to the next page. No matter how well it is going I’m allowed to take a break at that point. I’ll come back after to break the page again. Sometimes, I’ll keep going after breaking a page because I’m in the middle of a scene or a thought and I want to finish while it is fresh. I see I’m closing in on the bottom of that page, so I decide I’ll press on and break that page too. This is all a trick to get me into the groove of writing, and eventually I’ll forget about the pages and just keep going. If I break a page and find I can’t go on, then maybe I’m done for that day.
• Redefine what realistic goals are
This includes the number of projects you’re working on at once, the number of things you say yes to, and the number of words you expect out of yourself in a day. If 1500 words makes you not want to start, drop it to 500. If that feels insurmountable, drop it to 100. Once you pass that goal, you might want to keep going some days.
• Do not compare yourself to others
I struggle with the fact that success I was able to achieve in the past is suddenly locked off to me. As I watch my healthy friends continue to rise and go on without me, it can be troubling—not because of jealousy but because of mourning what I might have lost. It does no good to compare myself to them. That is no longer my path. I just have to find my own and walk it as best I can.
• Enlist your loved ones
Interruptions are terrible if you are struggling with cognitive issues. It can be especially frustrating if you finally get on a roll and then an interruption derails that precious progress. This may not be a short or easy conversation, but let your loved ones know where you are. Set aside a period of uninterrupted time with their help. As they give to you, it may require some give from you in another area. Develop a code of closed door, partially open door, and open door—some communication of where you are in your work. Don’t abuse the system you set up with them. If they cooperate with uninterrupted time, find a way to give back in time as well.
• Prioritize Rest
You need more of it. Working tired when you’re young or healthy is one thing. Trying to achieve something while tired, stressed, fatigued, and impaired is something else. If writing matters to you, rest. If you have to give up something else in order to get more rest, then decide if writing matters enough to you and find time to rest.
• Forgive yourself
You will fall short. There are days when you have nothing to give. Those days will pile up if you keep a record of them in your head, like a scoreboard for a game you are losing. Over time, that pile gets heavy. Forgive yourself for the days you couldn’t achieve and start fresh with the next day not piled up with failed yesterdays.
• Celebrate small victories
Even a microscopic achievement is something. Whatever little you did achieve, celebrate that instead of mourning all the rest you didn’t. This outlook sets you up to move forward no matter how small those steps might be.
• Believe in the power of tomorrow when today doesn’t work out
I have the attitude that today is the only day I have, so I’ll focus on that. When today doesn’t work out like I hoped, I have to hope for tomorrow. Putting things off until tomorrow can be a bad habit. When you are struggling with cognitive impairments, it can be an inevitable reality. On a bad today, you have to believe that tomorrow is a new chance. Wake up thankful for it and see what you can do with it.
My Future
It stings to realize things you were capable of in the past are now out of your reach. Facing the possibility of degenerative dementia is daunting because, in a sense, I can feel myself slipping away one memory at a time. It can feel like being slowly erased in a similar way that kidney failure felt like dying in slow motion.
It’s difficult to step back and take the long view in a situation like this, but I’m choosing to anyway. My future holds more testing and more adjustments, but it will hold more writing, too. Instead of doing crossword puzzles or playing brain games, I’m going to write stories.
I remember hearing about Terry Pratchett continuing to write while dealing with early onset Alzheimer’s and I didn’t understand how he did it. Now, I look from this place in my life and think, what the hell else am I supposed to do? Every story I write in whatever lucid years I have left is one more thing I’ve left in the world. It’s a thing I created that can’t be undone and has the potential to outlast me. There is no predicting life with perfect accuracy. Odds are that I will outlive some of you reading this article and a number of you will outlive me. That’s just how the unpredictable turns of life work.
Hope is sometimes looked on as a delusional thing. People think of it as wishing for something instead of acting upon it. Hope is a defiant emotion, though. It is looking at all the odds stacked against you and choosing to believe success is possible anyway. It is being surrounded by darkness but still believing in the light. Hope is getting close enough to see the inevitability of death and saying, fuck you. Not today. You won’t get me today and you probably won’t get me tomorrow, either. You’ll get me one day, but today is not that day.
With everything I have going on, I still choose to hope. When I say that I still hold onto hope, I want you to understand it’s me telling death to fuck off because I have shit to do today.
About the author
Jay Wilburn lives with his wife and two sons in beautiful Conway, South Carolina. He is a full-time writer of horror and speculative fiction. Jay left his job as a teacher to become a full time writer and has never looked back. Well, that’s not entirely true. He wants to be sure he isn’t being followed, so he looks back sometimes.
