My name is Nancy Carlson. I am the author and illustrator of 64 picture books.
After graduating from The Minneapolis College of Art And Design in 1976, I fell into illustrating pretty quickly because I needed a way to make a living. I started out with freelance magazine jobs, which led to advertising and design work. Then I learned about a Minneapolis publisher called Lerner. I showed them my work and soon was illustrating my first book.
I married Barry McCool about the same time that book came out. Barry had a small design firm, which grew to 20 employees. We had three children and settled into a pretty wonderful life! In 1996, Barry sold his design firm, and we set up a new company called McCool Unlimited to help me with book contracts and licensing my artwork. I let Barry handle all our money and manage my business. Over the years, I never asked how we were doing and never worried. I trusted Barry would handle it all as he had so far!
Fast-forward to November 2012. It was a cold, early-winter afternoon. Barry, our son Michael and I were sitting in a neurological clinic hearing these words: I am sorry, but Barry has frontotemporal dementia (FTD). What is that? Frontal what?
The doctor explained there is no cure and told us what to expect in the future — but I wasnt really listening. I was actually happy to finally know what was making my husband of 30 years act like a totally different person. I was also worrying about how to pay for this testing. We had no health insurance.
Our first moment of grace happened at the clinic that day. Aware of our financial situation, the doctor said, I am going to pretend this meeting never happened. Thank you!
Since then, I have learned about this horrible thing that has laid claim to Barry’s brain. FTD affects the executive decision-making part of the brain. The frontal lobe is responsible for problem solving, personality and common sense. The temporal lobe covers memory, language comprehension and hearing. It is common for individuals with FTD to have extreme changes in behavior and personality, including loss of empathy and interpersonal skills, inappropriate actions, mood swings and some obsessions. They become self-absorbed and eat the same foods over and over. The latter explains my sticky kitchen floor — because Barry eats waffles topped with tons of syrup all morning long.
Because of FTD, our financial situation collapsed. Barry had been making bad decisions for years, but I never questioned or checked on things. I was busy doing my work. Dumb. Dumb. Dumb. Does anyone have a time machine so I could change a few things?
Along this journey, we worked as caretakers, cleaning apartments, and shoveling/salting 75 walkways. We sold our favorite pieces of art and furniture. We moved four times, and I moved my studio five times. We lost friends to whom we owe money borrowed by Barry. We lost friends who don’t want to hang around now that the going is tough. At one point, I felt my family might fall apart.
But also along the way, I have seen grace from friends and strangers. And incredible love. I have seen that prayers sometimes really work!
So why am I writing this blog, and why is it called “Putting One Foot in Front of the Other?”
One day this spring, I reached the lowest point of this journey so far. Barry was getting up at 3:00 in the morning and eating waffles. FTD makes sleeping tough, and, as I said, they become obsessed with food. Last winter was cold and snowy here in Minnesota. Now spring was cold and snowy. I worked on trying to get disability and Medicaid benefits for Barry, and file for his bankruptcy. Meanwhile, I worked hard to get my own work done and keep a roof over our heads. I was exhausted and angry with Barry.
That same day, I received an email from a friend we owe money to. He, his wife and two other couples were all-together in Arizona and wanted to know what was going on. I get it! They want the money Barry borrowed from them without telling me. I found out about that last summer before his diagnosis. I would want the money back, too. I imagined them all having a beer and talking about what an idiot I am. Maybe they thought Barry is faking it. I don’t know; it’s just that we used to be a part of that group, golfing and traveling to Arizona. Now I just hope to have rent money.
I wanted my old life back — to be part of the gang having a beer after golf. I felt bad and hopeless. All I could think about was all we had lost. So I asked Barry if I had a life insurance policy. He said, “You won’t get much — it won’t be worth it.” Note to self: You can’t be dramatic with an FTD person, because they don’t have feelings like we do.
Barry can’t offer any comfort or advice. I thought for a brief moment that if I had life insurance and I were dead, it might be enough to pay everyone back! But I knew if I once had a policy, it was long gone by now. I also didn’t want to leave this mess to my kids. It was a low, low day for me. For Barry, too, because I yelled at him all day!
All through this hell, you know what? I still love life and wonder what’s next. Maybe it will be something really awesome. Maybe I’ll find a time machine. I really don’t want to miss anything quite yet! I want to get out of debt. And when I do, I am getting a tattoo that says — I DID IT!!
The next morning after this low, low day, I drew a doodle of me putting one foot in front of the other. Now it’s my new motto as I look forward to celebrating my 60 October 2013.
In that spirit, I am going to hike 60 trails this year by putting one foot in front of the other. I plan to blog about each trail hiked and share experiences on living with FTD in our lives. I will also include doodles and art from each hike. Some hikes I will post ahead so friends can join me! In the meantime, I hope people who have loved ones with FTD will share their thoughts and feelings as they also try to put one foot in front of the other each day!
Let’s just see what this year brings. COME ON. LET’S GO FOR A HIKE!!
For more information on FTD check out www.alz.org
For more information on me go to www.nancycarlson.com
