Sharing The Spotlight

I’ve never been the type to enjoy the spotlight. Growing up, I went to a school that hosted two school wide theatrical performances each year and I loved being involved in the behind the scene productions. Designing and making props, making sure everyone had their costumes and made it out on time, coordinating the sound and timing of the performances, I just loved it all. I usually had a part or two on the stage also, but the bright lights and nervous jitters just weren’t my cup of tea. Yet, here I am in the spotlight again, although this time with the bright lights of one exam table after another and the jitters of waiting for appointments, test results and future procedures.

As frustrating and scary as being chronically ill is, working hard to look for the positives in a trying experience can teach you a lot. Personally I’m learning to ask for help when I need it, and cultivating the humility to accept that help even on the days I feel I don’t need it (because if I'm perfectly honest with myself I can ALWAYS benefit from a little extra help). My faith and endurance have surpassed any level I’ve ever imagined and it gives me the strength to push through the tough times. I’m also working hard to find productive ways to pass time. Sitting around feeling sick sucks, so keeping my mind active helps me not to focus so much on how I’m feeling physically or my fears of the future.

Being chronically ill also puts you in the “spotlight” of other people’s minds, especially your family’s. “How are you feeling?” “Is there anything I can do for you?” “What’s your pain level today?” “When’s your next doctor appointment?” “Is it time to refill your prescriptions?” I am so grateful to have a family that willing and lovingly tends to me making sure I’m as comfortable as possible, but I find myself often wishing there was more I could do for them. I’m not working so I can’t help with the bills, especially my never ending medical bills. I’m not allowed to drive again yet so I can’t run errands, take myself to the doctor, or help pick my little brother up school. I quickly realized focusing on all the things I couldn’t do was only good for making myself feel pretty useless and decided to get off the pity potty and find things I could do.

For example, now that I’m gaining more energy I can help with the chores. Washing towels, making beds, and emptying the dishwasher may seem like little things, but I saw a quote recently on Instagram that said “Little things add up.” When my family is coming home from a long day of work or school, it’s nice that they can relax and have one less thing to worry about. I’ve also been working hard to put the spotlight on them. “How was your day?” “How are you feeling today?” “Is there anything I can help you with?” Family and friends of people who are ill spend so much effort taking care of that person that it’s often a great way to return the favor by simply showing interest in them and working hard to support their goals. That could mean being their sounding board for new ideas, helping manage their to-do list to keep them organized, or making breakfast or lunch so they can get out of the house on time. Again, the little task truly do add up to save time for them and to show how much you care. We Spoonies may not always be able to do much, but using our energy to support those who support us is never a waste of spoons. (See “Hi, My Name’s Simon'e and I’m A Spoonie” to learn about the Spoon Theory.)

Hi, My Name's Simon'e and I'm A Spoonie.

     Having Gastroparesis is...interesting. It's considered an invisible illness because the symptoms can't be seen just looking at me and this fact has it's pros and cons. For example, on a good day I can pretend I'm normal. I can go out with my friends and not have people staring or judging me. People who don't know me or my story don't treat me weird or ask a bajillion questions. Sometimes it's nice to forget about my pain and daily struggles even if it's just for a little while. On a bad day though, my main symptoms may be invisible to most, but the trickle down effects every aspect of my life. There are times that I'm hardly able to eat for days causing my body to be weak and my mind to move slow. It's like trying to swim in a pool full of peanut butter and absolutely exhausting.

     So I'm sure you can imagine that on my good days I used to try to take full advantage and do all that I could, but that's where this Spoonie thing comes into play. As much as I want to do all of the things that I used to be able to do, my "spoons" are limited. The Spoon Theory was accidentally created by a woman who was chronically ill and asked by a close friend "what's it like?" She grabbed a bunch of spoons and handed them to her friend. She went on to explain that most people start the day with an unlimited amount of spoons while people who are chronically ill start their days with a limited amount, and it varies from day to day. EVERYTHING that we do in a day must be carefully thought out in advance because even the simplest task can use a spoon or two and when you're starting the day with only ten for example, they can go pretty fast.

     Before I read about The Spoon Theory, I had trouble accepting this as my new reality. I'd work myself until I was exhausted trying to live my life like I used to and then spend the next two to three days worn out. When my family would tell me to take it slow and offer assistance, I'd proudly refuse. I'd never needed the help before and in my mind I was the same person I had always been, why did they think I suddenly needed help all the time? After learning about it though, I was finally able to take a step back and realize that accepting my new Spoonie status didn't have to me that I liked it, and I may do less but I'm not useless. I've learned to do the best that I can at a slower pace than I used to and that my family is more than happy and willing to help me when I need it. On the way home from my last vacation, my family and I where stuck in an airport for three days and they pushed me around that airport on wheel chairs and luggage carts the whole time and as tired as they were, they never complained or made me feel bad about it. If you ask me that's some real love right there=)

     Trying to live at my new "normal" is still a daily struggle that some days I win and some days I lose, but each day I learn. I'm learning to be patient with myself and others, to speak up, and to appreciate the small accomplishments in each day. Sometimes it's the little things, like checking off a box on your to-do list or a small act of kindness, that can really keep you going through the tough times.

Give In, But Never Give Up

     Some days I give in. I give into the fear, I give into the exhaustion, I give into the anger, and for the longest I saw this as a failure on my part. I believed that I should be strong enough to rise above negative feelings and felt that I just needed to toughen up. I rationalized that there are so many people who have a life worse than mine and still manage to function and be productive. I envied those that could put a smile on even when everything that could possibly go wrong had.

     I worked so hard to force my feelings into a place where I wouldn't have to deal with them, but that didn't make them disappear. Allowing my past bad experiences and feelings to build up was like running a marathon with one hundred pound weights on my ankles and expecting to win. Once I finally decided to deal with my emotions rather than ignore them, I was so much happier! True, dealing with emotions are not always pleasant or easy, but it's worth the effort in the long run. Everyone faces trials in their life, but the way you deal with it makes a world of difference in the effect that it will make in your life.

     A few weeks ago, I was sitting in one of my school's counselor offices filling out the paper work for my Associates Degree, and looked up to see a sign on the shelf that said "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." I sat there reflecting on all that I had been through in the past year to be sitting where I was in the moment, happy and feeling the best health wise that I'd felt in quiet some time.

     At the age of twenty, I had to quit working. I no longer had the energy to continue at my fast paced waitressing job, and although there had been plenty of times in the past that I'd wished I didn't have to work, I never thought it'd be because I couldn't. I had to drop multiple classes when I was sick so often that I missed more classes than I attended. Thankfully, some of my teachers were very understanding and worked with me so that I didn't have to drop all of them and was able to graduate on schedule. At one point, I was mostly house bound because I barely had the energy to walk from the den to the kitchen, not to mention just the idea of riding in a car sent my stomach spinning. After months of medical testing locally, I faced a trip to the Mayo Clinic for a very rough week of testing that not only tested my physical body, but my mental strength as well.

     Yet here I am, fighting. Every day with GP is a battle, and yes some days I give in, but I never give up. I am beyond grateful to have so many people in my life who love and support me through the good days and the bad. On those days when I do give in and feel that I just can't fight, I know they've got my back and will fight for me until I'm strong enough to get back up. They help me "dance in the rain" when I'm feeling terrible by doing everything they can to make me comfortable and bring a smile to my face. They help me "dance in the rain" by sitting and watching movies with me when I have the energy to do nothing else. Most of all, they help me "dance in the rain" by loving me unconditionally and letting me know that even when the best that I can give is 20%, it will always be enough for them. So for all you GP fighters and people facing the various trials of life, find those people, or reasons, to help you "dance in the rain" and never give up.