MY JOURNEY – The Box
I found the box the other day when I was trying to organize my drawers. It surprised me that I still had it tucked away. Although empty now, it used to be filled with cash. This box was hugely important to me for a time in the early years of this frontotemporal dementia (FTD) journey with my husband Barry.
It was a time when I was saying yes to everything and all opportunities in my desperation to stay financially afloat. I remember the day I received an email from a woman who works for The Alan Page Foundation. They wanted to create a picture book to raise money for the foundation. I was open to anything at that point, so we scheduled a meeting at the foundation offices. It was an honor to meet Mr. Page and his wife Diane. As we talked about book ideas, I knew right away that this was something I could not do. Alan had to be the main character in the story, and I know my limitations as an artist. I can’t draw Alan Page. I can’t do any realistic artwork. I suppose if I tried I could, but it would take me years of practice and this book needed to be done quickly. It had to be written and printed in time for the foundation’s gala that was six months away. I suggested they call Book Bridge Press, a wonderful self-publishing house and also try to get my friend David Geister to be the illustrator. As I left the meeting, I told Alan that he had better start writing right away. He and his daughter Kamie wrote the story that turned into a darling book called Alan and His Perfectly Pointy Impossibly Perpendicular Pinky.
So where does the found box come in? Because I was kind of involved with the foundation’s book (at least in the beginning), I was invited to the gala where the new picture book would be unveiled. I was excited to attend because we were so broke at the time that a free night out was just what I needed. It was also the first night that I went to an event by myself. I did not bring Barry because I was so mad at him. He also needed to stay back at our apartment where we were caretakers in case someone got locked out of their place. I had no idea at the time that Barry had FTD — all I knew was that I was angry at him all the time. At the gala, guests received a box containing a bow tie. Alan is known for his bow ties.
I had a good time but part of me missed having Barry there. I had not yet learned to go up to groups of new people and introduce myself. It was always nice to have Barry at my side when meeting new people because he was good at that.
That night when I returned home, I discovered that Barry had searched my drawers and my studio looking for money. He didn’t even hide what he had done because my clothes and art supplies were all over the floor. He was very mad at me at that point because I had taken over responsibility for our money by then.
So how about that box?
The bow tie box became my secret hiding place for any extra cash I had. At the time, we had no bank accounts. So here is how I managed things: When I got a check for speaking, I went to a check-cashing place (aka payday loans.) They took a pretty big chunk out as their cut for cashing checks. But I didn’t care because I had no place else to cash checks. I also paid all our bills at the cash-checking place, except the cell phone bill that I could pay at the phone store.
For all other things like rent, I used cashiers’ checks from the check-cashing place. I lived at that damn place for a few years until I finally found a bank that would let me open an account. Each time I got any cash, I put it in the box and placed the pretty bow tie that was attached to a piece of cardboard on top to cover the cash. When I was out and Barry searched my drawers, he never thought to lift up the bow tie. The box was foolproof. Sometimes at night I took the box out of my drawer to count the money hidden inside. It felt good knowing that I was starting to make my way out of this mess. Of course, later I would learn that Barry was suffering from FTD, and hiding money would be the least of my worries.
The box is empty now, but I am going to keep it as a reminder to myself of a really tough time in my life and also when I took control and started digging my way out of crisis mode. I am not even close to completing this financial journey, but that box represented my first step, and I don’t want to forget that!