My brother was born on 8.17.92. Three years later, he was diagnosed with San Fillippo, a rare metabolic disorder that causes fatal brain damage. It is referred to as a childhood disease because most patients never reach adulthood. This began a long journey for my family and I through a complicated grieving process.
While my brother battled his disease, my mother battled chronic depression. My father fought the daily fight to keep our family together. And me? Well, according to my current therapist, I battled survivor syndrome, the guilt of being the "well sibling," the performance anxiety and pressure to live the best life I could because my brother could not. Years of complicated feelings led me to use art and writing as outlets and to seek out professions in the fine arts and psychology. I got my Bachelor's in Fine Art Photography, then I later found the best way to combine my passions and I moved to Seattle to get a dual masters degree in family therapy and art therapy, an amalgamation of my entire life, it seemed.
By the time I was done with my grueling program, my brother's condition had worsened and I could not be away from home any longer (the guilt while I was gone, is another long story). I moved home to be close to my family and help care for my brother, in what seemed to be the last years of his life. At the same time, I pursued my post-grad hours so that I could obtain a therapy license in Pennsylvania and eventually open my own private practice. But my depression and anxiety, and the strain of caring for my brother were too much for me to handle all at once, and I took a break from the community mental health field, to care for myself and my family.
This was the most tumultuous time of all, full of bouts of depression, existential crises, panic attacks, and eventually, the birth of an alter ego Instagram account as an outlet for my shadow self and my growing obsession with the dualities of life and death: Pitt & Pendulum. I lost and mourned a lot during this time: my job, a lot of my friends, my sense of self and purpose, my sanity, perhaps. But I was able to openly grieve these things through the new outlets I found and I built a strong community of new friends who understand and support this part of me.
I have always been in love with the Victorian era, and now I know why. Not only do they celebrate and live life in a decadent fashion, but they honor death and the process of dying in a way that I wish we all allowed ourselves to do. I never felt like I was allowed to talk about my brother and his disease. My mom always said it was "best not to go through it twice." But I was always a weird kid, with a dark sense of humor and an attraction to the macabre, and now it makes so much sense to me.
Since I moved back home, I began collecting Victorian mourning objects, and eventually selling some of them when I could not afford them. It became a way of processing my losses and the eventual loss of my brother in a beautiful way. Through treasured objects that held memories and secrets of other lives and loved ones who were lost.
But how do you anticipate grief? How do you grieve someone who is still with you? The truth is, there were many losses of him along the way, and anyone who has had a loved one battling a terminal illness may know what I mean: his speech, his cognitions, his awareness, his motor skills, his ability to walk, to eat, were all losses that we had to grieve as they came. Over and over. We grieve the life he could have had. I mourn the loss of a sibling and what it might be like to have a relationship with him, every day.
But in the end, the truth still stands that he has fought and outlived what everyone thought was possible. On 8.17.17, my brother will turn 25 years old, despite predictions that he would not live to see his teenage years.
I have chosen this day to relaunch my website, because he is an inspiration to me, and the reason I find the strength to keep going through my own mental health struggles. I have recently returned to the mental health field, determined to finish my post-grad hours and sit for my exam so that I can be a licensed family therapist and practicing art therapist. This, of course costs money as I have to pay a professional supervisor to oversee and sign off on my hours every week. I plan to use my freelance writing, photography, and my antique shop as a second income in order to be able to do so.
I thank you all so much for your support along the way on this crazy journey.
My brother is still alive, and so am I. Celebrate life. Honor death.