Our PSP Path, and Ashes to Beloved Places: Releasing Dennis

man with wine glass outside snow and ice
Dennis faces PSP with a glass of wine and a smile

You might say scattering your husband’s ashes is an end. Dennis died November 29, 2021 from a neurological disease called PSP, Progessive Supranuclear Palsy. Neither of us believed this disease would win. If he was here, he would say it didn’t. Releasing ashes and sharing his story has been a road I would not have asked for, but it is a journey, not an end.

When we married, it was second time for us both. Mine had been brief and childless, his had been long with kids and grandkids. I was happy without a ring, but he was not happy without one. When we decided to be a married couple, I insisted it be longer than his first marriage, and we promised each other that.  It might have been, except for PSP.

Second marriages seem to offer what everyone hopes for from first marriages. Neither Dennis nor I liked the idea of divorce. We both believed in lifetime marriages, and wished we had not added to the growing divorce statistics. But if we hadn’t we would not have found each other. We were astounded to have found more than a partner, but a mate–whatever you want to call it, soul mate, adventure buddy, best friend–who offered things we did not have in our previous marriages. We were kids again, hiding under tables and going boo! Kissing whenever we could. Laughing, playing endless games and going on adventures. These were the best years of my life, and I hope his too. (That’s what he said, anyway)

He didn’t tell me when he thought something was wrong. He felt it inside before it was obvious. But then he began to shuffle when he walked. I thought it was a second hip replacement needing help, but the hip was fine. We met with doctors and naturopaths, and listened to stories of others with similar symptoms. We were given diagnoses of Lyme disease, Parkinson’s, one of his daughters told him he should get checked for syphilis, and a stranger at a bar thought it could be a parasite. We were given suggestions, but none fit. We looked into stem cell therapy. Whatever diet he felt would help, I was on board, creating menus and religiously following whatever he wanted from paleo to plant-based. He was diet-bombed by well-meaning family who sent whoopee pies and chocolate coated-cookies, so diet never really had a chance. And they were right. 

We circled back to mainstream medicine, and a neurologist determined Dennis had PSP and gave him an eight year lifespan. I asked about the diet Dennis then believed in, and the doctor said it didn’t matter, give him whatever makes him happy. So, whoopee pies and fat ass in a glass (Allen’s coffee brandy and milk) it was. It was also a relief not to have to follow some pretty demanding diets that involved time-consuming prep, and I no longer had to try to get to the mail before Dennis in case there was a sugar bomb. 

Finding out Dennis had PSP started us on a journey and we tackled it together. We were both in denial, or naive, but we somehow still believed there was a cure. Even as Dennis and I stopped biking, and walking sticks became the norm, and then a walker, he still said he was going to live to be 125. Less than a year before he died he hid behind a door to scare me. How did he get so frail, but still be so cute and sexy? His attitude that all was fine kept us going, and made things easier for me. I hardly noticed when I packed for us both, and made all travel arrangements. The wheelchair at the airport was just a courtesy. 

Denis was delighted when he managed to hide on me.https://vimeo.com/manage/videos/774768181

Dennis had always been the driver. I loved navigating, feeding him tasty bits, and reading stories aloud as we drove on our adventures. Becoming the driver was one of the few difficult transitions. PSP was sucking his life away, but somehow we just adapted, and still had adventures.

I joined a PSP facebook group, and they were my support, even if they did not know it. Dennis did a Cure PSP zoom group.

We traveled to the National Institutes of Health, and they confirmed the PSP diagnosis. I am not sure Dennis ever really accepted he only had a few years to live and that  those would be difficult, but in brief candid moments he did. 

Speech became more difficult, even with the most awesome speech therapist you could ask for. She helped with flashcards and other ways to communicate, but we really communicated through telepathy. I do not understand it, but up to two days before he died we carried on conversations when no one could understand him verbally. Thumbs up and down made yes/no questions work for everyone else.

How do you watch the man you love and wanted to be a wrinkled old couple with die? And how did he smile and laugh until it was time to be still and gaze into another world? After years of dealing with PSP together, we needed and had help. Dennis’ granddaughter came to stay for a few months, and they were golden. Sara was no-nonsense, building the stand-up walker, teasing him, and sharing an Allen’s Coffee Brandy and milk, along with morning-after regret. David took him for coffee at the pier more times than I can count, and today wears many of Dennis’ favorite sweaters and boots since they were the same size. Melissa and another David played music for him, Grandfather’s Clock. So many friends came, sat with him and told stories, showed pictures of fishing adventures or read.  

When he fell, and he did, even when I was right at his side, strangers picked him up, dusted him off, and learned about PSP. We became the PSP poster couple because we never gave up. Two years before his death a friend asked why I did not consider a safer home for him. A year before he died, I asked him what he wanted from the rest of his life. The answer was the same. Love. I could not bear the thought of not having his back to press against at night. He talked about the young daughter of friends closer than family that fed him donuts when we all went ice fishing for the last time. 

PSP took Dennis’ life, but not his spirit. Mid-May, I handed out the last of the brochures we had printed as a program for his service/party on New Year’s day. It had his obituary and a few photos and quotes. I had not planned to reprint but knew I wanted to keep sharing, so reordered them with no changes. This was an insignificant order, 250 8.5 x 11, tri-folded brochures.

Bruchure panels
The flyer for Dennis’ service

A day after I placed the reprint order I was in Cherryfield releasing ashes into the river. Uprint called. A person. A soft-spoken female-sounding voice. She said she noticed a problem with my file, it said January 1, 2022, and here we were in June! I explained it was a reprint of Dennis’ program. She went on to say that she noticed it because of the quote, requoted sort of from Winston Churchill about never giving up. For some, this is a cliché. For Pam, it was a life changer. She told me that she was at a low point in life, depressed, and wanted out. Somewhere in the midwest, the file for the brochure came under her scrutiny, she read the whole story, and felt uplifted. Dennis L. Smith was the one who gave her direction and hope. Here he was impacting, maybe saving, a life he never even knew about, six months after his death. I shared this story with a local pastor who said, “You can’t script something like that.”

And so I will make a journey, releasing ashes wherever those ashes and I find ourselves. Some releases I will write about and share, but all are precious. Love always.

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