DSC_0003_003There is a medical alert bracelet on my left wrist. Medical alert bracelets are there to notify others of some special condition in the event that the wearer cannot speak for himself. Things like diabetes, allergies, heart conditions, epilepsy, and Alzheimer’s Disease. Mine says:

Michael Gooding
Dementia – BV FTD
ICE <phone number>

The idea is that if someone finds me wandering around in my underwear at two o’clock in the morning, they can look at the bracelet to see why I’m behaving that way (I suffer from dementia) and who to call (my wife’s cell phone).

I suffer from a neurological condition called Behavior Variant Frontotemporal Degeneration (FTD). It is one of a family of dementias of which Alzheimer’s Disease is the most well known. The upshot is that nerve cells are gradually atrophying in my brain’s frontal lobes (the areas behind the forehead) and temporal lobes (the regions behind the ears). In other words, my brain is dying, beginning with the areas that control judgment, empathy, foresight, and conduct. So you see, wandering around in my underwear at two o’clock in the morning is not an inconceivable scenario.

There is no cure for FTD. There are no therapies to slow its progress. Statistically, the median survival rate for people at my stage of progression is five years. Some live longer; some not so long. I am sixty-four, so I have a fifty-fifty chance of seeing my sixty-ninth birthday.

I’m okay with this. We all have to die sometime, and I have lived an interesting and fulfilling life. I am ready to meet my Maker whenever he says, “It’s time to come home now.” In the meantime, whether I have another ten or fifteen years, or only two or three, I try to live each day as fully and as authentically as I can. I’m pretty sure that’s all any of us can do.

Death does not concern me, but dying does. My concern isn’t for myself, but for the people around me, especially for my wife and daughter. I have the easy part; all I have to do is die. They have the hard part. They have to watch me gradually and inexorably lose my ability to think and act and care for myself. They will most likely have to put me in some kind of long-term care toward the end. They will have to find a way to let go of me as I fade away. Then they will have to figure out how to move forward without me. It is not difficult to imagine the medical, financial and emotional challenges they will face. I wish I could spare them this journey. (But then, who am I to make judgements about other people’s journeys?)

My brain is dying. The medical alert bracelet on my left wrist reminds me of it every day, which in turn reminds me that each moment of each day is precious. It reminds me to hug my wife and tell her I love her. It reminds me to visit my daughter and play with my grandchildren. It reminds me to take time to sit on the deck and listen to the sounds of wind and birds and children laughing. It reminds me to reconnect with old friends. It reminds me to make time for the things that matter most and that bring me joy.

There is a medical alert bracelet on my left wrist. It reminds me to live.


As always, thanks for taking the time to visit my blog. Comments are welcome.

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