Stronger Together: 2 Lessons on Community from Chemo & The Twilight Zone

Being sick can be lonely. On top of pain, fatigue, and the mental toll, people can multiply our stress. I had a few moments recently when I wanted to scream, “Are you trying to make me crazy?” Whether it was rude hospital staff or difficult loved ones, the stress was tremendous. Thankfully, I had moments of respite that included last week’s July 4th Online Party I threw during SyFy’s Twilight Zone Marathon. Thirty-six people attended.  10547347_10202535370442575_1506558997900575852_oLike the party I threw during last New Year’s Eve Marathon, we had fun posting comments live on Facebook while watching episodes on TV or YouTube. The second event that gave me tremendous comfort was meeting Cynthia, a Fashionably ill reader and Facebook friend, yesterday.  She traveled from out of state to undergo chemotherapy.  In addition to cancer, she also has fibromyalgia. It was the first time we met. While I usually am positive, I do have jaded moments. Spending the day with Cynthia reminded me that hope, faith, and peace are real.

Twilight Zone Guests’ Thoughts

“Everyone bonded, and were more enthusiastic in sharing their ideas with the group.” –Jersey Steve

“Any experience is enhanced when it is shared, whether you are searching for the alien in the room, trying to escape from a mysterious cylinder, or simply watching a favorite television show.” –Mark

“The best thing for me is finding people from all over the country who watch the same 30 minute show as me and find something COMPLETELY different, but just as good.” –Ashley

Chemotherapy with Cynthia

As someone with five illnesses (bipolar 2, polycystic ovarian syndrome, Myasthenia Gravis, asthma, psoriasis), I know how important visitors are. During some of my most painful procedures, visitors brought me joy. (Note: Not every patient wants visitors. It’s important to respect a sick friend’s preferences.)

I spent the day telling Cynthia stories. She showed me pictures of her three children and husband. I could relate to her story of having other difficult experiences in addition to multiple illnesses. Despite these trials, she told me how grateful she was for her faith in Christ and the unconditional support of her church. Cynthia met her husband when they were in the fourth grade. They were high school sweethearts who married during college. Fourteen years later, she was beaming as she shared their love story. I’ve seen so many crappy marriages in my life. But Cynthia reminded me that happy endings really do exist.

2 Lessons on Community:

  1. Our scars can give others strength: As I previously blogged about, my scars from procedures used to make me feel ugly. A few weeks ago, the dermatologist examining me said, “I noticed your surgery scars. I can laser those away.” They don’t bother me anymore; I have no intention of spending a day in the hospital to remove them. Right before Cynthia got her IV, she noticed my scars and said, “Oh you’ve done this too.” Indeed, I have. Just as staff missed her blood multiple times yesterday, they missed mine too years ago. I told her to insist on a “butterfly needle” next time, which is necessary for people with small veins. In that moment, I was thankful for my scars. Likewise, listening to Cynthia tell me how God has carried her through some painful experiences gave me strength.
  2. Technology can bring us together: For seven years, I refused to join Facebook. Than I saw a family friend I hadn’t seen in years. She said, “I thought you were dead. I couldn’t find you on Facebook.” I was astonished and I told my pro-Facebook friend, Andy, about this. I said, “I don’t need Facebook. Why did she think that? Alexander Graham Bell did an excellent job with the telephone. That’s all I need.” Then, Andy said, “Okay, but imagine if you were living in 1900 and you were the last person left who didn’t own a telephone?  All your friends owned phones.” He introduced me to another perspective on social media. Through this blog and its Facebook page and Twitter, I’ve met so many brave warriors who have inspired and comforted me. Without social media, I wouldn’t have met Cynthia or made so many awesome Twilight Zone friends to spend the holidays with. (I’ve missed many holiday gatherings due to illness; it was great not to be alone on a holiday.)  Click here for instructions on how to subscribe to Fashionably ill.

–Your Stylist, Jessica Gimeno

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

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