My family and I have set out for a great day of scavenger hunting, in the form of letterboxing, as our way of participating in The Longest Day, a summer solstice event where people around the world do activities they love as a way to raise awareness and funds for the Alzheimer’s Association. I was diagnosed with younger-onset Alzheimer’s and chorea, a movement disorder, around the age of 40. I also have two siblings and parents who have or had Alzheimer’s. And this year, we found out that my daughter, who is only 21, shows the very early stages of this devastating disease.
The past several years have been really tough on me physically and mentally. With time and emotional healing, determination has become my focus to help change the horrible process I am going through. I want my story to be heard to help spread awareness, push for more research and, the most importantly, for people to realize that anyone, regardless of age, can have this disease.
Letterboxing, which started in England in 1854, has been a hobby and passion of mine for the last five years. Letterboxing is an exchange of your own handcrafted rubber stamp image with the one you find, recorded into your own logbook and into the guest log of the one you find. I have found more than 400 letterboxes all along the East Coast.
At sunrise, my family and I set out in our cars to find the first letterbox of the day. We reached the beginning of a trail located in a nearby park. The clues led us down a few different paths until we found a perfectly hidden box, tucked into a tree trunk. Letterboxing requires a lot of stealth because you cannot let “Muggles” (people that do not letterbox) find what you seek. Unfortunately, some will take the precious stamp or just toss it away. But once we find a box, we all log in and start out again to find our next box.
We drove a bit to a beautiful library in a city close to us. It has underground tunnels, as well as old and unique elevators that take a person up and down to many hidden stacks. We parked and headed in. We went left, right, up, down until we finally came to a very old book that the clues led us to. We opened the book and inside was one of the most amazing hand-carved stamps I have ever found. Pages within had been carved out to hide this precious stamp and logbook. We again log in, exchange stamps and re-hide this book to its place on the shelf. Then off we go to our next one.
After a wonderful day of letterboxing, we plan to finish our day in a place that I have been drawn to since I was a little girl — the bluffs. It’s a beautiful spot on the shores of Lake Ontario. The calming water still takes my mind away from all the daily frustrations and my own declining condition caused by this disease.
In the beginning, I was told I was forgetting things due to stress from my job as a corrections officer. My husband then started noticing I couldn’t remember how to do everyday tasks like laundry. From there, I began forgetting how to drive home and how to leave a store and slowly began losing motion on my left side while a noticeable tremor developed. Several months went by, which turned into years, of more referrals to different neurologists, unending testing, blood work, misdiagnoses, and emotional and physical stress.
Finally, I was told I could never work or drive again. More recently, I now require 24-hour care in my home. My entire independence was taken away from me, which led to a deep depression.
The different degrees of pain I went through is unacceptable. There needs to be a proper and easier process to help those who are suffering. All of my own frustration and devastation have become my passion to fight back. I hope the disbelief of some doctors and the feelings of helplessness I felt don’t happen to anyone else. I want everyone in the world to know about this devastating condition and advocate for more funding to find a cure.
These are only a few reasons that I am involved with The Longest Day.
About the Author: Melanie Wagner, 44, is participating in Alzheimer’s Association The Longest Day®. Melanie lives in Webster, N.Y. Married to husband Sean and mother to Gage and Mercedes, she was previously working as a corrections officer at her time of diagnosis. Click here to follow Melanie and her team during this event.