Today is Day 6 of the WEGO Health Activist Writer’s Month Challenge (#HAWMC on Twitter and Facebook). And today, I am answering this question:
Your Hero: Everyone has someone they look up to – a person they go to for advice, an individual you admire or idolize. It could be your partner, a family member, coworker, or someone famous. Who are they and what makes them awesome in your eyes? #HAWMC
MY ANSWER: My Mom
I struggled with who to choose for this question. There are a number of people I look up to (famous and not) who admirably manage illness but I’ve realized that caregivers are often unsung heroes. Often, their wounds are invisible. Having five illnesses is not easy. The one thing I always thank God for, though, is that none of my nieces and nephews are sick. That doesn’t mean that one day they won’t be sick, but for now, they are not disabled or living with chronic pain. What would hurt me more than all the pain I am constantly in is if one of my nieces and nephews got sick. This made me think of my mom. In 2008, when I was diagnosed with and hospitalized for Myasthenia Gravis, MG, her sister was also battling stage 3 colon cancer.
The Soap Opera
At one point, when I was coming out of critical condition, my mom almost had a heart attack. Lately, I’ve wondered how hard it must have been for my mom to see both her daughter and her only sister sick. To top it off, it’s not like MG was the only war we had been through. Previous to getting MG at 24, I already had bipolar disorder and polycystic ovarian syndrome for years. MG was and is the most mysterious opponent my family and I have faced given its rare nature; MG is a neuromuscular autoimmune disease. Now, my aunt, Tita Baby, is also a warrior! After a year of chemotherapy, she achieved remission. A few weeks after we celebrated her remission, Tita Baby was diagnosed with breast cancer! Thankfully, we have a close-knit (and huge) family and great family friends. After another year of chemotherapy, Tita Baby also beat the breast cancer. Those were some really rocky years for us. I spent over a year bedridden and had several medical procedures.
Love & Understanding Is Not a 1:1 Ratio
One of the things I hear from people with illness is how hard it is to find someone who understands. In my experience, a healthy loved one can understand…but perhaps not immediately or 100% of the time. Can a person intuitively understand know how I feel fighting bipolar disorder, polycystic ovarian syndrome, Myasthenia Gravis, psoriasis, and asthma everyday? There is no emoji or Hallmark card for those emotions. My mom has no illnesses. Since many of my changes are invisible (example: fatigue), I have to explain what I’m feeling from time to time. Some of those conversations are difficult. What I’ve learned from our relationship is that love is about trying to understand what the afflicted person is feeling. When I was diagnosed with bipolar disorder at the age of 18, I was scared and relieved. Scared because my friend’s suicide was the catalyst for my diagnosis (you can learn about how I got a diagnosis by watching this short documentary MSNBC did on my life). And relieved because getting a diagnosis meant I no longer had to fight a nameless, faceless enemy.
One night, my mom told me, “I can’t understand what you’re feeling. But I know depression is hard and I’m trying to understand what bipolar disorder is.”
Sometimes we confuse love with understanding; if this loved one loves me, why doesn’t he/she “get it”? And yes, there are people who refuse to listen. But I think when a person makes the effort to understand, that is love. Bipolar 2 was my first diagnosis, and it feels like that was a thousand years ago. But it’s a comfort to know I still have my mom in my corner.
See you tomorrow when I answer the next WEGO #HAWMC question. You can join the challenge by signing up here!
–Your Stylist, Jessica Gimeno