My father was diagnosed with Progressive Supranuclear Palsy in 2017. Progressive supranuclear palsy (PSP) is an uncommon brain disorder that affects movement, control of walking (gait) and balance, speech, swallowing, vision, mood and behavior, and thinking. The disease results from damage to nerve cells in the brain. The disorder’s long name indicates that the disease worsens (progressive) and causes weakness (palsy) by damaging certain parts of the brain above nerve cell clusters called nuclei (supranuclear). Estimates vary, but only about three to six in every 100,000 people worldwide, or approximately 20,000 Americans, have PSP—making it much less common than Parkinson's disease.
Before his diagnosis I had been visiting him once a week. I could see his declining health but I just thought it was old age and that people age differently. In the beginning I struggled with these visits. What in the world do I talk about with my Dad? But it wasn’t long and we found our rhythm. One thing that we did was listen to Mike Rowe’s podcast They Way I Heard It. If you get a chance, check it out. You’ll like it. That time, companionable silence opened the door to having wonderful heart to heart conversations. He started to share with me in a way he never had before and soon I was telling him things about myself, my life that I once kept hidden from him. Once we got the diagnosis so many things started to make sense. Unfortunately, he has struggled with health issues all this year. In the spring he fell and was hospitalized. After rehab he rebounded a bit and was able to come home. He could walk short distances with a walker but spent the majority of his time in a wheelchair. We passed the summer like this. I would visit three times a week and give my Mom a break from caregiving. I would bath him, help him navigate the bathroom, make him lunch etc. Modesty was quickly stripped away and again, it revealed a new level to our relationship. During this time, I focused a lot of my energy on being present with him. At the end of October, he fell again and this time he broke his tailbone. Back to the hospital and rehab. The day before Thanksgiving he was admitted to the hospital with a severe infection. Cleared that up and he’s back at the rehab place. I don’t know how long he will live. Each time he has one of these health crisis’ he rebounds but he’s still losing ground. When I am with him, I try very hard to be present. To allow myself to let the world fall away and to just focus on him and what he needs. He needs company, he needs patience, he needs help, he needs to be heard. He needs someone to just BE with him. Someone to hold him in light and love. People say to me, “I’ll pray he gets better.” And they mean well but the disease is progressive and he’s 81 years old. What I pray every day is this, “God, give us the strength the accept this situation, to be compassionate, to make the best decisions and give him a peaceful death.”
In September, for my birthday, Michael and I were hiking and I had a crushing epiphany. I had been spending so much time with my Dad that I had been neglecting my own family. Jasper was getting older and I realized, sitting right there on that mountain, that I may not have much time left for hiking with him. He has arthritis and even if he’s here next fall he may not be physically able to hike. I sat in that field and cried. I resolved right there to make some changes. As hard as it was to tell my Dad I shared with him how I felt and that I was going to visit twice a week and take Jasper hiking while I still had the chance. That I needed to be present for BOTH of them and this was the way I was going to accomplish that. Little did I know how right my intuition would be. At the end of September we discovered Jasper had a really infected tooth and enlarged lymph nodes. He had surgery to remove the tooth and we chalked the lymph nodes up to the infection. After his antibiotics were finished and his lymph nodes did not recede, we aspirated the nodes. The pathology was inconclusive. Could be leukemia, could be cancer, could be an infection. We started him on prednisone. Shortly after, on a Friday morning he spiked a fever. The vet started him on some heavy-duty antibiotics and we discovered he was anemic as well. I thought he was going to die that first night. His breathing was so labored and he was so fatigued. Once the antibiotics went to work he made it through the weekend and just like my Dad rebounded but wasn’t 100%. I realized I had to figure out how to be present for him, now. I reduced my work commitments as much as possible and made my time with him a priority. I knew, in my heart, that I didn’t have much time. I still thought, though, that I had more than we ended up having. He had a pretty good two weeks and then on a Monday morning he was so fatigued. I scooped him up and we cuddled on the bed all morning. He was always my cuddle buddy. I called Michael to come home early because I had to visit Dad and go to work and didn’t want him to be alone. When I came home that night the look on Michael’s face told me everything I needed to know. He wasn’t going to rebound from this. We called the vet and made arrangements for them to come out the next day. So, on Nov 6th, 2018 we helped our beloved companion and teacher pass from this world to the next. He was at home surrounded by Michael, Monica, Stanley and I. We were able to tell him how much we loved him and would miss him and that soon he wouldn’t be in pain anymore. That soon he would be young and vibrant again and running with Maverick. I keep telling my Dad that when he dies and gets to the other side to look for my dogs. That they will be there waiting for him and will show him the way back to me. I know that Maverick still visits us and he will show Jasper how to do the same. While my heart hurts that he is not with me I know that he is not “dead”. Energy doesn’t die. He is just transformed and on to a new adventure. Part of me knows that my time with him was a gift and that our connection is still as strong as always and our souls are intertwined and that we will be together again. And part of me is still in shock that he is gone. With Maverick we had a year of “pre – grieving” and a fast death, (he was gone 12hours after we found him unresponsive). With Jasper we had a short period of “pre-grief”, just a few weeks and we didn’t even really know we should be preparing ourselves and a longer death. We watched his body fail for 24 hours before he died. And if that doesn’t sound very long to you let me tell you it’s an eternity when your companion can’t walk and has labored breathing. I knew it was time to let him go because his physical body had failed. But it was just so quick (just months) and so recent (6 weeks tomorrow) that I find I am compartmentalizing to just get through the holidays. Just writing about it brings on the sobbing “ugly” crying that you see in movies. I take solace in the fact that while I can’t be present with my pain now I was 100% present with him at the end of his life. I gave him everything I could before he died.
In the spring Michael’s mom was diagnosed with cancer. She had brain surgery and spent the summer cancer free. It has returned and she will be starting chemotherapy soon.
But last year wasn’t all “bad news”. There were really joyous moments as well.
In February my beloved niece, Monica and her husband Corey had a baby, Athena Bobbi Castellano. I am over the moon excited to watch not only Athena grow up but to watch Monica and Corey grow and mature as parents. Athena is the goddess of wisdom and war and is the perfect namesake for this little one. Every time I see her, I think of the Shakespeare quote, “Though she be but little, she is fierce!”
Last year Michael entered a small art show and took first place in sculpture. Building on that success this spring he entered another show at a Denver gallery. We had a few friends with us for opening night and when they handed out the awards he took Best in Show! What an amazing moment! Feeling the anticipation build as they went category by category and then finally hearing his name is a moment neither of us will forget. And having our friends there to share the moment made it that much sweeter. With that win came the opportunity for his own exhibition. So, in October to celebrate Michael’s 50th birthday he had his very first art exhibition at Gallery 1505 in Denver. It’s not a big gallery but it’s a start and it was so much fun to see him step into this next chapter of his life. Hot on the heels of that exhibition he entered and was selected for his first international show, Craft Forms 2018. It was a REALLY big deal to even be selected and we made the trip to Pennsylvania in December to attend opening night. He didn’t win an award but he did sell his piece on opening night. I can’t wait to see where Michael’s art takes him in this life and I wonder how his life would have been different if he had allowed himself to be an “artist” his whole life instead of waiting until now.
In October Michael celebrated his 50th birthday. We went hiking and it was a perfect day. It was sunny and warm enough for just a light jacket. Not a cloud in the sky and no wind. There were pockets of snow in the shady areas that the dogs could play in and dig. I didn’t know it would be Jasper’s last hike but it was and it really was perfect. We spent the day together in a place that we love and I know that Maverick was there with us. And, don’t ask me why, but I dragged along my tripod so we could get some family pictures, never dreaming they would be our last with Jasper, but they were and I’m so grateful I have learned to listen to my intuition. You can see we are getting a little grey, and maybe a little thicker around the middle but there’s just something about the picture that I love. I think it’s “us” living our life in the present. Not worrying if I have makeup on, or if my hair is perfect, or if we are dirty. It’s us as we recharge our batteries and create memories. I love it so much I put it on our Christmas card.
I sit here right now, thinking about all these moments on 2018. When you look at them individually you see some that were wonderful and some that were absolutely crushing. But when you look at the whole picture you see life. This quote seems to sum up 2018 perfectly.
“Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and awful it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful ordinary life. And it’s breathtakingly beautiful.”
~L. R. Knost
As we all step into a new year may we all be “present” in the moment. May we all see our breathtakingly beautiful lives.