James Funk describes how narcolepsy changed his life—but didn’t change him.
My journey with narcolepsy started in a pretty strange way: arguments with my wife. Now, when you have been in a relationship with someone for almost 20 years and you have three children, arguments happen. But we had some strange arguments.
We were arguing about whether or not we’d had certain conversations. My wife kept telling me that we had just discussed something and there was absolutely no way I didn’t remember it. I was telling her she was crazy: I would remember if we had just had a conversation. We both were certain that we were right, though neither of us could prove it.
And then I started repeating things. I would have a conversation with someone, and minutes later start it over again. Sometimes I had a funny feeling I was repeating myself, but nothing concrete enough to stop talking. Finally, I had no choice but to give in to my wife’s request that I find a diagnosis.
I had to see seven specialists—two pulmonologists, four neurologists and one cardiologist—to get a diagnosis. I have been diagnosed with sleep apnea and narcolepsy with cataplexy, in addition to a dyslexia diagnosis from childhood. Pretty much every doctor I have seen has been somewhat stumped. I have heard the phrase, “nonstandard symptoms,” more times than I can count.
Narcolepsy has had very major effects on my life that others can see. Within 17 months I went from what my wife and I considered to be a very mild narcoleptic, to having such severe symptoms I could no longer work. My initial diagnosis was in July 2014—and by December I could no longer drive. I could not stay awake while sitting in a car. By November of 2015, work became impossible. At the age of 36, I was no longer able to provide for my family.
When initially diagnosed, my wife and I thought I would have to take some medications, but overall things would be fine. We could not have foreseen all the symptoms, or the severity of the symptoms I would encounter. The two symptoms that bother me the most—mainly because they affect me pretty much every minute of every day—are my memory and my speech. My memory is awful. I struggle with names, trying to remember things from my past, trying to remember things from yesterday, simply trying to remember anything. The memories are still there, but I can’t access them when I want to, and once I do access them I lose them almost immediately. My memory also affects my speech.
I think that I am a relatively intelligent person; I graduated summa cum laude with a bachelor’s in business while working full time. At my job as a quality manager at a machine shop, I dealt with many people every day: customers, suppliers, auditors, etc. I was almost never caught off guard, and if I was, I could normally talk my way out of it. Now, during most conversations, I have to stop talking in order to try to find the word that I want to use. Other times I completely lose my train of thought and can’t recall what I was talking about. Many times I feel like an uneducated buffoon that does not know how to talk.
Unfortunately, memory and speech are not the only things narcolepsy affects in my life. There are also some pretty significant physical symptoms.
I can no longer stand in one place. If I try, my body starts to sway forward and backward. I know that it is happening but I am not able to stop it. Many times I have to grab something to keep myself from falling. I always have to be very aware of my surroundings in case I sway too far.
I have to be careful when walking because my knees buckle quite often. Having narcolepsy with cataplexy means I suddenly lose control of certain muscles. Most days, simply walking across my living room, my knees will buckle multiple times. I have to be extremely aware of where I am at all times. No matter what I am doing I have to be careful.
I also have symptoms others cannot see. I have had multiple hallucinations, the worst being when I thought my son was not following directions causing me to scold him. Unfortunately for me, he was following directions. I know this because my wife was with him and confirmed it.
My sleep is all messed up. Sometimes I sleep all day and other times I can’t sleep at night. I can only sit if I’m in a rocking recliner because my upper body is in a constant state of motion. Of course, the recliner also increases the likelihood that I will fall asleep. If I sit, I have to use my tablet at all times. I need two or more things actively going on to keep my mind from putting me to sleep. I am no longer able to simply sit and watch something on TV with my family. My children’s school events pose another problem. I have to keep moving, so I end up jogging in the back of the room. There is not a single part of my life that narcolepsy does not affect.
But all is not lost! While narcolepsy has closed many doors for me, it has opened many others. I no longer work, but I am able to see my wife and kids much more. And if I am in some sort of constant motion, my symptoms are muted. This means I can play with my children outside if the weather allows. The key is to simply not stop moving.
Narcolepsy has provided me with time and opportunities to help others—something I always meant to do but didn’t. I have taken part in online conversations, offering advice and support. I attend a support group. My sister was also recently diagnosed with narcolepsy, and I am trying to help her navigate the journey with fewer bumps in the road than I experienced.
Narcolepsy has allowed me to write (as long as the TV is on). I blog almost every day. I am slowly working on a book about my journey. Writing helps me cope with my symptoms and life changes, and is another platform to help others.
Narcolepsy has broadened my social network. I have met people through online support groups. In my in-person support group, I have made good friends, and met some of their families, giving me a better understanding of what it’s like to try to help those of us with narcolepsy. I have met so many inspirational people, people with powerful stories. I have met people with narcolepsy and other diagnoses through Caring Voice Coalition. No matter how hard things were, these people kept fighting the battle with their disease. I have probably met more people in the last 17 months than I had in the previous 34 years of my life.
For me, two things are key to continuing to win my battle with narcolepsy. The first is the continued support of my wife and family. Without their support, I don’t know where I would be. They help pull me through on my bad days, and provide me with a constant drive to keep fighting.
The second key is that I had to change my mindset. I had to stop looking at the future, stop worrying about what could be, stop worrying about what has happened. I had to focus on the now; I had to start living in the now. If I live in the now, things are much easier. I remind myself daily that I woke up today—and how grateful I am for that.
Narcolepsy has changed many things in my life, but it has not changed who I am. Narcolepsy may have closed many doors in my life, but has opened just as many. In many ways, narcolepsy has made me a better person. No matter what challenges you encounter, always remember: tomorrow is another day. Always remember, you are still you!
Read James Funk’s blog at jfunk29.weebly.com.