The moment Dad passed into the great beyond, Barb (my sister) and Dave (my brother-in-law, my other sister Jan’s husband) were driving to MGH for one of her definitive scans. At this point, we were about 90% sure of what it was–Posterior Cortical Atrophy. Sure, there were signs we all saw, including Barb. But, as you do, you explain things away and wade around in a little denial because reality is just too scary to accept. Menopause, stress, anxiety. All of these were offered up as possible explanations for what Barb was going through. A few of us, however, began to beat our drums louder and louder with every passing week. Something was not right and the longer we stayed in a pool of denial, the less time Barb had to receive treatment and help. It wasn’t until a neuropsychologist said “atypical Alzheimer’s” that the road before us came into blurry focus.
With a confirmed diagnosis and action plan in place all around the time of Dad’s funeral, everything was kept under wraps from Mom whom we didn’t want worrying needlessly as she prepared to say goodbye to her husband of nearly 64 years. Dad’s memory had slipped away slowly over the years, his life bubble got smaller and smaller. I am just now making sense of the weight of what we handled within our home. How did we do it? “Dad’s brain is being donated” was one of the first things Mom told me when I walked into the house hours after he passed. Turns out, as Barb was having her scan, Dad was donating his brain in the very same hospital. I have imagined these two events happening at the same exact time; there is nothing more painfully poetic. Dad would have gotten a kick out of donating his brain, I worried that he was somehow going to need it wherever he was going. I’m funny like that, lending sentience to the inanimate. But, I’m a writer and a weird one at that so just go with it.
Perhaps this last selfless act will shed light on this loathsome disease, perhaps his brain will go to some crazy Frankenstinian doctor which would amuse him to no end. About a week after Dad’s funeral, Jan, Barb, and I sat down with Mom to fill her in on all the subtext that ran underneath Dad’s final days. For the most part, all went well. Barb is enrolled in a study and is likely slated to receive the new drug that can help slow the progress of Alzheimer’s. Mom seemed to roll with it, to take it all in like any kind of somewhat surprising news. Three hours later, I heard the sobbing and knew that it was just sinking in. “Why? Why?” she asked, over and over. “I don’t know, Mom.” I told her “It’s not fair.” I agreed. Her sorrow turned to anger, focused in a direction that I will not elaborate on but could through anger I myself carry. I will say this: Diseases of the mind will steal far more than you anticipate and will begin that process long before anyone is aware of the danger. This is their reality now, figuring out what to do with the many broken pieces scattered all around. Our reality is figuring out how best to spend the time we have remaining. This is what's next, what calls us now.
Last week I was in Puerto Rico, a journey of uninhibited discovery. This weekend we were back in the thick of things, all the emotions and imperfections front and center. Thomas and I have had some tough conversations, all vulnerabilities exposed and in the open. Just like the rest of humanity, we, too, are broken. If you are sitting there saying “I’m not broken”, I will say “Give it time.”, the very thing Thomas tells me when I extoll his virtues—humility, obviously, being one of his greatest. “I will.” is my response whenever he throws that out, I mean and intend business. With everything going on right now, I have come to the following conclusion: love is not for the foolhardy, it is for those who sense that to gently surrender yourself to another (any other) not only because it feels good but right, is what a life of purpose is all about. Although countless difficulties will be tossed your way be you prosperous or poor, it seems to me that if you choose the very courageous path of love (whatever shape that may take)— the kind that goes far beyond giving it “time” and ventures well into the messy and ugly—you can find the true essence of what it means to be alive, one grossly scarred human alongside another. Run towards the grief, pain, discovery, and redemption. Give it time. I know I will. Barb, you are loved more than words can tell.