Scleroderma

Over the years I have encountered my fair share of friends raising money for AIDS, Breast Cancer, and so on. Often times their reasons for involvement were obvious; but I always still wondered, why people got involved, how they got involved, and what kept them involved. So when I could, I happily donated.

Just this past year, I was bestowed the incredible honor of being able to ride (as a support cycling instructor) on stage at Equinox’s annual Cycle for Survival event which raises millions of dollars a year to fund rare cancer research at Memorial Sloan Kettering Cancer Center. I cried while listening to the harrowing tales of sadness, but I was struck by the strength of our community. Cancer or no cancer in my life, my heart felt deeply for every family that lost a mother, father, friend, daughter, son, niece, nephew and so on. Cancer affects us all. Sadly, cancer and cancer-related deaths are on the rise; thus its visibility and diagnoses at this point are not a matter of if cancer will strike a family, but when.

The big ‘C’ or ‘FUCK CANCER’, like so many say, rightfully so garners a serious reaction from people. You mention cancer and people instantly give you their attention and sympathies. Cancer is something we talk about, know about, and are much more public about. It is something we are more comfortable discussing because tragically cancer has become so commonplace in our world as a result of environmental factors, diet, industrialization, and more.

But this post isn’t about cancer.

And this post certainly isn’t about devaluing anyone’s battle or struggles either. My problems are not bigger than yours, and we are not in competition with one another with respects to whom has been dealt a shittier hand of cards. This post is merely about my life and experience with respects to growing up with my mother, someone afflicted with an autoimmune disease.

For me, this is about drawing awareness to chronic illness. It has been my experience that when I encounter people afflicted with autoimmune conditions, they down play them or very quickly mention it as an afterthought. Usually, the thought is then followed up with, ‘Well, you probably haven’t heard of it…’ before changing the subject. And maybe, no—I haven’t. All of us haven’t because when it comes to chronic illness, there is no cure or potential cure, and in the interest of being completely candid—we just do not know what to say or how to react to something we do not know, nor understand. We all fight our own battles and choose to wage war differently. For me, the way I wage a war is to strike straight to the heart and make you feel something in order to stimulate action. I openly discuss the happenings of my life with the hopes that somehow, somewhere, my story is touching a life…

My amazing mother and I. This pic is from September 2016 when she flew out to LA to support me in my first body building show!

My mother has lived with an autoimmune disease virtually her entire life. At 19 years old her youthful body was fatigued and rundown. She was diagnosed with Juvenile Rheumatoid Arthritis (JRA). However, as my mother aged, her symptoms worsened and did not subside. It wouldn’t be until almost 20 years later when my mother would be diagnosed with Lupus. I was in middle school at the time (though my mom seems to think elementary school) and this was well before the internet, so all we had to work with was from what the doctors told us. Still, the gravity of my mother’s Lupus never truly made sense nor hit home. I think this happened because as a pre-teen one’s only thoughts and focus are on and of oneself.

As I moved into my teenage years, I was a nightmare to deal with. I was not only unruly, but a raging mess of hormones. I was violent, aggressive, and my moods erratic. I spent much of my high school years grounded and bitching to my boyfriend Josh how much I hated ‘them’. During our family blowouts, my father would scream at me, “YOU ARE KILLING YOUR MOTHER!”

That was the only time my mother’s illness ever came into play or conversation—when I upset her or the status quo at home, which trust me, was a daily occurrence.

We never changed our diets; my parents remained relatively sedentary outside of commuting to and from their jobs in New York City, and life rolled on. However, yearly we attended the Lupus Walk to raise money for research. The impression though that I got from my parents was it was a half-assed effort. Something they did because they felt obligated to; as opposed compelled to participate in because of a deep seeded want to help their cause. And that’s not necessarily a bad thing either—to each his or her own. Just because someone is afflicted with something doesn’t call for instant and complete mobilization of charity events, fundraisers, and involvement. The difference between my parents and their approach to my mother’s illness when compared to my husband and his disease is vast. People like myself and my husband Greg rally our community around our passions and causes. Albeit, the world we reside in is immensely different than the world of yesteryear with things like crowdfunding and social media; but we are public and visible with our successes and our struggles.

My beloved family at our wedding in LA

My mother never complained, asked ‘why me?’, or even demanded special treatment. As a matter of fact, my mother retired from her work at Con Edison after 41 years of service never even informing her employers of her condition or filing for FMLA (Family and Medical Leave Act). To say my mother, whom is this sweet and kind soul is tough, is an understatement. She’s a quiet kind of fierce. The kind you never saw coming—a woman that in her retirement took up yoga and water aerobics after YEARS of inactivity. My mother, as she ages is getting super weird as ‘old people do’—doesn’t miss a thing. Observant and thoughtful, she thinks of others first. Two days after I got my braces on, a package arrived at my house from Costco. My mother sent me a waterpik to ease my efforts in trying to keep my [new] braces clean. She is and always has been that behind-the-scenes kind of woman who deserved more from this life. Hell, from me. More on that in a bit.

My mother, now 61 years old lives with her Lupus and thankfully it doesn’t appear to be an issue. Granted, as with any disease these things manifest enormously different from person to person and can take a turn for the worse at anytime. My mom does take medication for various things and has throughout the years, but aside from minor hiccups here and there; she’s earned a relatively clean bill of health. I am convinced part of my mother’s longevity and relatively healthy life is a direct result of her mindset when it came to her illness. Granted, both she and my father could certainly eat better and be more active (yes, I am totally throwing you both under the bus here); but her mental state is precisely what’s correlated to her overall well-being. My mother chose to define life on her terms as opposed to letting her illness define her. Similarly, my husband Greg recently wrote about this topic on his blog. You can read his post by clicking HERE. I cannot emphasize enough the power of a positive mindset. We cannot control the things that happen to us in this life [like I mentioned in my last post, click HERE to read it], but we can consciously decide how we proceed forward.

Now as a woman now of 35, I feel deep sadness that I didn’t invest in my mother’s health and illness sooner. As my mother and my father age, I worry incessantly about their health and well-being. But more than that, I feel selfish that only now with my husband’s own chronic illness (Scleroderma) I am using my voice. I am embarrassed to say that my uncle has diabetes, my cousin breast cancer, and many of my friends are living with debilitating illnesses and NOW—now I am using my voice?! At times I grapple with feeling like I am not good enough to lobby for a cause, this cause in particular for I have willing sat idly for so long…And then I step back and realize that I need to be kinder to myself. Beating myself up to rally around and for every cause is not only not possible, but the timing wasn’t right for me.

The time is now.

I am grateful to have such inspirational people in my life to model how to gracefully approach adversity. Moreover, I am inspired by their strength to use my voice as a rallying cry to direct more funding towards autoimmune disease research, treatment, and spread awareness. I cannot look back at what I didn’t do but I can look ahead to the future and know what I can and will do.