One side of this journey isn’t about research reports, risk factors, or advocacy goals. It is just about how it feels to wake up and live with Alzheimer’s. Today, the simple truth is that I am sad.
This disease turns lives upside down. Dealing with the daily reality - the worsening memory, the frustration of struggling to type, the cold shivers, and the effort it takes to get words from my brain onto paper - is an incredibly heavy weight to carry.
I was sick late last night. I actually do not remember why I was sick. All I know is that Linda came into my room a few times to check on me. I slept well until about three o’clock. Here I am four hours later, still awake, having a cup of coffee and sharing my thoughts and feelings with my tribe.
I am always hesitant to write about my sadness and depression. It would be easy to put on a brave face for the blog, but that wouldn’t be honest. This sadness is part of the journey.
One thing I am really struggling with is not being able to work. I suppose my research, writing, and advocacy projects count as work. It doesn’t feel like real work, though. No matter the business I owned, the work always focused on helping people. Of course, I received compensation for helping people. That is a welcome reward.
I was packing my closet yesterday and found my work boots. The memories those boots and I share would fill a book or two. I wish I could put my boots on this morning and head to a job site.
Even during the dark days of my journey, I refuse to just sit and quietly wait for the disease to run its course. I am going to keep learning, keep writing, keep educating, and keep fighting for awareness and prevention. But on days like today, I also have to acknowledge the grief. Giving myself permission to feel this sadness doesn’t mean I am giving up; it just means I am human.
Big Bit is softly snoring as she sleeps beside me. Today is a day when I yearn to be a cat.
I am going to answer a few emails and post a new video on our GoFundMe page. We try to provide an update every few months. This video is not really an update; it is more of an appeal. I will post an update when we are settled into the new digs in Greensboro.
Thank you for walking this path with me, even on the darkest days. Your compassion and support mean more than words can say.
Greg
PS - A sneek peak at the Go Fund Me video. My shirt speaks volumes.
Shoes, boots especially, can be such a record of life. The stories they could tell. For me, that would be hiking a few 14ers back in the day. Plastic ski boots have been places, but don’t absorb them the same way. Old handbooks related to work have filled that role in my life in the times before the internet became so good at answering questions. I have one each from the C++ and Perl programming languages that are worn, even a bit smelly, from heavy usage in the 90’s. One keyboard in particular shows heavy signs of wear on keys rubbed smooth: my Happy Hacker keyboard in black.
I’m sure your boots show more wear and character though. Thanks for triggering some memories.