Most days this is an impossible question to answer. Not just for someone like me. We all have our struggles and it’s hard to find that proverbial silver lining. Especially when we are bombarded from every angle by news of murder, racism, animal cruelty, human cruelty, war, and so much more. Still, when struggling with chronic pain and illness it’s very hard to even reach for, much less find what is actually good in your life. Living hurts, it’s a constant struggle, and it seems that the world as a whole is bound and determined to make it harder on us.
The last few months I’ve had some pretty rough experiences. Instances where both friends and strangers said and did things that were extremely painful. I’ve always been pretty sensitive, but with this illness I find that being attacked or mistreated because of it really strikes me in a way in which I have no defense against. I don’t want to be sick. I don’t want to be in this position and being pinned to the wall for it is just a knife in an already open wound. I can’t fix it or change it. I got nothing. So instead it throws me backwards in my whole coping process to the kicking and screaming and gnashing of teeth. It’s not productive at all.
So, last time I talked about control. I can’t control other people. Obviously. I can control the people who are important to me. I can pay attention to how people treat me and follow a path to a place where I will spend my time with people who treat me well. This got me thinking. They say that practicing gratitude can greatly affect your own perception. Our brains work kind of like a computer, where the more often we light up certain parts of our brains the easier it is to access that area. So, when we take the time to think about what is good in our lives, even if we don’t find anything, just the act of looking around, it lights up the part of our brain that has the good stuff. If we make a habit of taking a minute a day of looking for something good it will make it easier for us to spot good things in our lives. At least that is what all the books say, but I will admit when I have practiced gratitude, even when all I could come up with was my fuzzy blanket, it did make a small difference.
Last night a series of small things really got me thinking about what is good in my life and though my life is a constant struggle, I realize now that there are some amazing reasons I am still fighting and they deserve to be recognized. The first is my big brother, he does so much for me. He is the one that takes me to all the concerts that always give me something to look forward to, something to live for. He finds the concerts, gets the tickets, drives me there and I always know I’m safe with him. If anything goes wrong he will take care of me, but he magically walks this line of not treating me like I’m an invalid, but also making me feel like I’m not being pushed to do more than I can do. He is always great company, fun to talk to, full of stories, intelligent conversation, and ready to laugh and have a good time. Sometimes he stops by just to take me out to lunch or dinner, or brings by a sandwich or coffee and sits and chats. He also did something really amazing by giving me some purpose, he needed some help with the social media side of his work and asked if I was interested. It’s not hard work, it’s actually pretty fun, I got to learn a lot of new skills and it’s something that doesn’t have to be done on a deadline. I can do it when I feel up to it and not do it when I don’t. It makes me just a little bit less of a waste of space and I get to help him in some small way, which is nice considering all he does for me. Thank you, Mike, you’re an amazing person and even better brother.
Then there are my parents, who, of course, desperately just want to fix it, but since that isn’t really in the cards they try everything they can to help. My Mom helps me keep track of my doctors appointments and keeping my medications refilled, neither of which are small jobs. Sometimes she goes to the doctors with me and sometimes I go to the doctors with her. She understands a lot of what I’m going through because a lot of what I have is hereditary. We can commune over the evils of showering and agree that a big day is a doctors appointment and lunch. We both have a fine appreciation for naps, it’s nice to have someone around that gets the physical struggles. She tries to keep me fed and I say try because I’m not a very good eater, but without her I would be living on cereal and peanut butter and jelly. She always greets me with a cheerful “good morning,” even though my answer is usually a mumble. She is happy to see me, happy to have me, and shows me she loves in a million small ways. She is beautiful and I wish she could see herself through my eyes. Thank you Mom, you’re my heart.
My Dad really wants to fix it. I know that he struggles with feeling helpless in the face of have no ability to do so. Still he comes down and checks on me all the time. Asks me how I am doing and is always, always hoping for improvement, though I can’t give it to him. He sometimes keeps me company during dinner. This is different because I eat lying down, so there is no all sitting at the dinner table. He randomly takes me to lunch or brings back a rootbeer float and often comes down just to chat. He always asks if there is anything he can do. He doesn’t know much about medical, but is willing to do or try anything I can come up with. I told him about health advocates and within a couple of days he found me one. That’s the way it works with him. Just knowing how much he wants to help is enough for me. On the rare occasion I can think of something he can do to help, it’s usually done within a day. He’s a stud that way. All three of us are trying to navigate the insurance and medical bills, but that’s a constant uphill battle no matter who you are. I wish that I could give him something to fix, something that would somehow make it all better, but then if I knew that we wouldn’t be in this situation. Still, what I think really matters here, no matter what he does or doesn’t do, is how much this shows he really loves me. Thank you Dad, you’re a wonderful man.
I have friends that I don’t see all the time, but check on me when too much time passes just to make sure I’m alright. It’s a little thing, but it means a lot. I have other friends I know I could call in the middle of the night and they would help no matter where or when, no questions asked. I have friends that always bring a smile to my face when we are together and sometimes even just thinking of them. I have a small group of friends that suffer from similar illnesses and in them I find understanding, empathy, kindness, and a willingness to help anyway they can even though they are suffering terribly. I have a friend that trusted me enough to ask me for a favor. Even though she felt she was putting me out, I felt honored that she knew she could ask and that I would come through for her.
Finally, last night we went to a concert, but stopped by a party at a friends house for a few minutes on the way and I was greeted with the warmest hug from another friend I don’t see often. It made me realize that this was another person that has always treated me with nothing but kindness and warmth. Another intelligent, talented, successful person in my life that was offering amazing things. Someone I should draw closer. At the concert my brother had invited a friend I never met before, he was another intelligent, successful, charming, fun, and witty individual. We all talked quite a bit over the course of the night, stories, economics, politics, traveling, you name it, we probably hit it. I had a great time and at the end of the night a certain topic came up and I asked for a referral and instead of a referral he is actually going to make something happen that I’ve wanted for several weeks now. We are practically strangers, but he is doing me a great kindness. I’m pretty blown away.
My life may not be the one I wanted, the one I worked hard to get and it certainly isn’t easy, but I am grateful to those in my life who help me fight, give me reasons to smile, and do so much for me.