Finding the gratitude in the midst of challenges

I really should be going to sleep right now, because I have to get up early to drive to Denver for a medical test, but I have had several thoughts over the last several days and wanted to share them, if for no other reason than to get them out of my head, although I hope that my thoughts might be of some help and/or encouragement to others in similar situations.

When I was in high school, one of my co-workers called me Pollyanna, like the Haley Mills character and movie. She called me this because she said I looked like the character and had a similar attitude. Sometimes the phrase "Pollyanna attitude" is used in a negative way to describe someone with an overly positive disposition, someone that denies or ignores that there is anything negative in the world. I do try my best to have a positive attitude, but am fully aware that life is hard. My life has certainly not been easy or what I have expected it to be.

In a recent email to a dear friend, I wrote the following and truly believe what I wrote.


As I said, we all have trials and challenges, and I believe that it's what we do with those trials that defines who we are and what our lives become. I'm certainly not saying it's easy or that I never break down and cry and want to give up. Of course I do, it happens. But, for me at least, giving up, especially at my age of 29, is not an option. I have too much left to do, to accomplish,  too many people to help in this journey of crazy twists and turns that makes up life, especially life with one or more chronic health conditions. And while I am certainly no doctor, and would never claim to know even a smidgen of what you all learn and practice, I do like to think that I have learned certain medical conditions pretty well and how to help others advocate for themselves, along with me advocating for myself,  which is something that you taught me. I know I'm going to have quite the fight ahead to find a doctor that will perform a hysterectomy on a 29 year old, but based on everyone with EDS I have talked to and my gut feeling, I know it's the right decision.

My rambling point is simply to say that life is what we choose to make of it, in spite of the curveballs that may be thrown our way. As much of a control freak as I am, I've gotten to a point where I TRY not to have to control everything, because the truth ia, healthwise, I can't control much. But that doesn't mean my life should stop or I should give up my dreams and what I'm passionate about. In fact, much of that has come clearer the last several weeks. I don't know what life has in store, but as my profile picture on FB says, I want to inspire people. Even if just one person looks at me and my life and chooses not to give up, then I have done something meaningful with my life. I don't of my story or myself as that special or inspirational, but maybe someday, I will write the book everyone keeps telling me I need to write or I'll be on that Ted Talk. I've found my niche and my passion and now just need to get the word out. I am presenting at a conference in March about advising students with chronic health conditions. Maybe someday, I'll even have an office in the new health center :)

My friend wrote the following back to me:
Julie, as ever, you are inspirational . I love to hear your enthusiasm and aspirations of changing the world. You have already, you know, person by person.

Her words touched my heart and although I don't think of myself as inspirational, I try my best to be an example and to help others the best I can. While I am not grateful that I have EDS and all the other medical issues, I am grateful that I am able to use my knowledge and experience to help others, like my wonderful Spoonies.

I had the wonderful chance to go and visit with a very dear friend out of town for a long weekend, including Valentine's Day. She is one of the only people that understands the hardship of chronic pain and mystery medical problems. We used to be roommates and joked that we would wrestle at night and that's why we always had braces and splints on and having surgeries. We would trade off having surgeries and taking care of each other. One time, we ran into each other in the parking lot of a large medical complex, leaving notes on each other's cars and laughed hysterically. No one else seemed to think it was as funny as we did. We would spend our Friday nights curled up under blankets with space heaters, watching Golden Girls and What Not to Wear. She is married now, with an adorable two year old girl that I got to spend four days playing with and spoiling and getting to be Aunt Julie. My friend and I got to spend an hour together watching What Not to Wear, just like old times, and it was a perfect episode. There were TWO references to Golden Girls in the episode. We also got to go shopping together, like old times. We didn't make it nearly as long as we used to, but had fun nonetheless. I was able to snuggle with a sweet, busy little girl and read books together. It was a wonderful break from my everyday life and I am grateful that I took the time to do that.

I've learned, that's what coping with and living with chronic illness is all about. Finding the moments and experiences to be grateful for, taking the opportunity to do things that you might think you can do later. Enjoying the little moments, like watching a funny video on YouTube, finding that cute pair of shoes on sale, the warm day in February when the sun warms your face. Realizing that you have been able to make a difference in at least a few lives when you come into your office the Monday after Valentine's Day and find that some of your students have left you a very thoughtful and sweet handmade gift. Being able to laugh at the look the ER doctor gives you when you list off all the reasons that you and brain surgery and he asks you to slow down and spell them for him. Sitting in front of a classroom full of 100 college students and getting them to participate in the song, "We're Going on a Bear Hunt" and being able to laugh and be silly in a college class. Getting an email from a student that thanks you for your influence and example. Even in the midst of pain and trials and challenges and illness and the unknown, there are always moments to be grateful for and it's important to remember those moments, document them even, so that when we are feeling down and hopeless, we have something to remember or read or look at to remind us of all we have to be grateful for. I keep a box in my office with positive comments from course evaluations and a folder in my email for uplifting emails and notes sent to me. When I am having a bad day, am doubting myself, am feeling inadequate, feeling like a burden at my job and not an asset, I read those notes and emails and cards.

This week in my class, we have been talking about music and movement with kids inside the classroom and outside the classroom. There are two videos I always show, videos that I find inspirational, and yes, make me cry because I'm a sap. One of my students from the first semester I taught my class sent me a card before a surgery with a picture of a cat with bandages on it and the note inside said that he always thinks of me when he hears the Katy Perry song "Roar" because of this video and reminded me that I am also a fighter. Here are the links to the videos and I encourage you to watch and be inspired, be encouraged and be grateful.

"Roar" by Children's Hospital at Dartmouth-Hitchcock
https://www.youtube.com/watch?v=lnG3MKos87A

"Brave" by University of Minnesota Masonic Children's Hospital
https://www.youtube.com/watch?v=N8xnLkyKgsE

It may be a slightly unrealistic and somewhat hokey show, but I quite enjoyed and even related to the show "The Red Band Society".  It's about a group of teenagers with different chronic conditions that are currently living in a hospital and they basically run the place. Tonight I watched the season finale, which was pretty perfect and so that is where the quote that I will end with comes from. It was said by a nurse to the mom of one of the patients and says well what I tell my students, what I tell myself, why I will continue to fight to change the name of a certain office on my campus to use person first language. I am not just EDS girl or POTS girl or Chiari girl or mystery medical conditions girl. I am Julie and I am so much more than just a person with multiple chronic health conditions.

"That's just her disease, it's not who she is."