These past few weeks I’ve found it hard to write. Anything. When you lose a good friend, a part of you dies. However, when you’re sick and you lose a friend who is also ill, you lose a fellow soldier. As many of you know, I lost my good friend, Jess, to muscular dystrophy a couple of weeks ago. When she died, I lost my friend, my confidante, and my sounding board. Together we were fighting a daily war against neuromuscular autoimmune diseases, and now one of us is no longer here. When I write most of my articles for Fashionably ill (as well as other sites like The Huffington Post), I am tired. Very tired. Jess proofread my articles; she understood my fatigue well and the conflicting emotions that come with battling chronic illness.
I found out Jess died on a Thursday morning when I came home from a great breakfast with a fellow mental health advocate. As I was taking my scarf off, I read a Facebook message from my friend Victor (who also has muscular dystrophy) telling me that Jess passed away the night before. I literally crumbled to the ground; I had the wind knocked out of me. I cried for two and half days. On Thursday, I lay in bed almost all day—still in my winter coat—unable to do anything but cry. That Friday, I called in sick to work—I wasn’t able to coach debate, and I’m someone who came out of the womb talking politics. The combination of grief from Jess’s death, nausea from my new treatment for eye and ear pain and preparation of my debate team for the State Championship has been overwhelming. In fact, we compete in two state championships, which means twice the stress!
Jess and I originally became friends through a General Hospital (GH) soap board. Her avatar was Vincent Izzary from All My Children and her alias was “Vintage Virgo.” I assumed she was a middle-aged man. Her posts were more fitting for a doctoral thesis than a soap forum. And I love people who also like to over analyze things like daytime soaps. Victor and I became close friends through GH and we eventually discovered that we were both sick—with muscular dystrophy and Myasthenia Gravis (MG), respectively. When I was a Finalist in the WEGO Health Activist Awards last year, Victor asked Jess to vote for me and introduced me to her on Facebook. Imagine my surprise when I found out that she was young and female! Jess often marveled at the fact that three young strangers with neuromuscular diseases found each other through a soap board. She said, “What are the odds?” Jess wasn’t able to talk on the phone—so Jess, Victor, and I had conversations almost daily through Facebook messages. One day Jess was there. And the next she wasn’t.
Jess was a realist. When she was diagnosed in her early twenties, doctors said she probably wouldn’t live to be thirty years old. (Sadly, they were right.) While I was not given a short life expectancy, MG has almost killed me. Days after I was diagnosed at the age of 24, I was hospitalized in critical condition. It’s been nothing short of a rollercoaster between the MG and the polycystic ovarian syndrome and bipolar disorder. Like me, Jess had one goal in life: to see the book she wrote published before she died. Before I got sick, I wrote a book to help young adults with depression and bipolar disorder. Jess wrote fiction. (You can read the first four chapters of her book, Huntress, here on Juke Pop.) She made peace with the fact she would never get married and have kids. Like me, she had to fight daily pain and fatigue. (In 2013, I came really close to getting my book published. This year, I hope to pitch it to the competing publishing house.) We often hear, “You can do anything you put your mind to.” It’s a nice sentiment. But, sometimes, illness and death get in the way. If you have a goal and you don’t have major obstacles in the way, pursue it. Fight for your dream.
People say I shouldn’t be surprised that Jess died. But any time someone young dies, there is shock and regret on top of the usual grief. When I was 18, I lost a friend with bipolar disorder to suicide. Her death and Jess’s death are the only times I’ve literally had the wind knocked out of me. In opening up ourselves to love, we expose ourselves to risk. Through this blog, I have met so many wonderful people with a wide variety of illnesses. I’ve even visited some of them in chemo. I remember meeting one of these friends, Cindy, for the first time in chemo.
In my confusion, I’ve wondered: Are the blessings of loving a friend (particularly one who is ill) worth the risks of heartache should that person not survive? Two weeks after I found out about Jessica’s death, I had my birthday. I wasn’t sure how I would handle that anniversary, as the 7-day anniversary was rough. But I got a birthday card from Cindy, which was a surprise as people rarely mail birthday cards anymore. I believe that the joy from deep friendship is worth the risks associated with loss. I am shaped by the trials in my life as much as the people in it. And I hope that I have blessed them too.
–Your Stylist, Jessica Gimeno