On The Outside Looking In

“Yesterday is gone. Tomorrow has not yet come. We have only today. Let us begin.” -Mother Teresa

A perspective of PSP and the heartbreak of the family by Ryan.

Jenny’s parents were young when they brought her into the world, and the short gap between their ages helped to form a bond that might not necessarily have been there if a more profound age difference existed. Jenny always said she was thankful to have such young parents because growing up they were very active and did things that not all the other kids’ parents were doing. For example, Jenny often talks about her mother and how she would pull over to the side of the road as they were driving when coming across a patch of wildflowers. Together with her mother, she would examine the find, and her mother would encourage her to identify them. That’s how Jenny now knows the names of most of the flowers in Vermont.

Jenny also remembers with fondness how as a child she would never leave the house in the summer without her swimsuit. Her mother would insist on a change of clothes being kept in the car just in case in their travels they uncovered a beautiful swimming hole. The randomness of her parents’ ways and their attentiveness and participation in her daily activities is something she attributes to her parent’s age. “They were always involved with me and my siblings,” she says. The look in her eyes as she glances back into the past and once again relives those long-ago moments is indicative of the love she has for them. Jenny considered herself lucky because most kids do not get the opportunity to grow up and have parents who still have their entire lives in front of them, too. The chance to spend so much time with them, and to enjoy all of life with them, is something she holds near and dear. However, when her mother was diagnosed with a rare and fatal brain disease, everything changed.

Progressive Supranuclear Palsy (PSP) is a rare and fatal brain disorder. Jenny says all the time how a diagnosis of PSP is “like winning the lottery.” This disease, however, is not the lottery anyone wants to win. The comparison of the lottery stems from the rarity of the disease.  She fights back the tears and shakes her head. Suddenly, a slight smile forms on her lips and she sighs and laughs in a way that suggests this is simply her family’s typical bad luck. “Leave it to someone in my family to get a rare brain disease,” she says. She takes the news about as well as anyone can. Jenny was slow at first to process what the diagnosis meant. Back then the “scary stuff” was still somewhere down the road, and it was tomorrow’s problem and could be dealt with in the future.

Time is unforgiving, and reality began to set in with her mother’s loss of mobility. The progressiveness of the disease started to show its ugly self. Simple tasks, such as walking, became more of a struggle and eventually impossible. Jenny now has to assist her mother in and out of a wheelchair to get her to the bathroom or anywhere else around the house. Conversations that once filled the silence of the house are not as familiar anymore due to the loss of her mother’s speech. The words are slurred and at best difficult to understand. “She’s trapped in her own body” is how Jenny explains it. That is what PSP does to someone. The mental faculties are still fully in place, but the disease takes away the victim’s ability to move his or her own body. Jenny often talks to her mother without expecting a response. “I’d give anything to hear my mom’s voice again,” she says. “Not the way it is now, but the way it used to be, you know?” She regrets not ever having recorded her mother’s voice for prosperity. She only wants to talk to her. She understands her mother is there inside, even if on the outside it appears she is not. Jenny will sit in a chair next to her mother and knit while talking about the events of the week and fill the silence with her own words. The time they spend together is cherished.

Time is of the essence. Jenny acknowledges that there are so many things she would like to do differently if she could go back and do things all over again. She would record her mother’s voice. She would talk to her mother and ask her questions and seek advice. Jenny says she is guilty of thinking there would always be a tomorrow. For all of her life, Jenny has been comforted by her mother, and now she is losing her. “This is so unfair,” she says. Jenny spends the remaining time she has with her mother trying to give her comfort and searching for ways to fill the emptiness she feels by this devastating loss.  You never know what kind of obstacles life will throw at you, and Jenny will be the first to tell you to “enjoy every minute you have and don’t ever take anything or anyone for granted.”