Don’t Hate Me Because I’m Happy…

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If there is something chronic disease has taught me over the years, it is that happiness is a choice. Sure, that might sound “cheesy” but it’s not, far from it, in fact. Learning to be happy in the face of constant pain and an uncertain future, learning to be happy when you have been forced to make yourself financially dependent on family, learning to be happy when every breath of air is a struggle, learning to live in constant fear, learning to let go of your career…is not easy. It’s a skill.

Recently someone else with sarcoidosis had a very powerful and alarmingly negative reaction to my suggestion that when we are stressed, it’s a good to “step back, inhale and laugh.” That when we are stressed we should remember that we are never given more than we can handle. She said, “I have lived with a positive attitude, glass is full of golden apple juice, jada jada. It is just more serious than a bunch of platitudes. Coping skills are built with time and character, not a bunch of cheesy sayings.” Being reminded to step back from stress is not “cheesy” and it is not a “platitude.” Remembering to step back during stressful times, in difficult situations and have a bit of a sense of humor, is in fact, a coping skill and a good one. It’s also one that takes time to develop and it is one of many ways to build character.

Whenever I am taunted by someone for being generally happy or for trying to face my problems with a positive attitude, I find it sad. I feel pity for people who choose to be victims. I have been accused of being a pollyanna when it comes to this disease. This is not true. There are no reasons that I can think to be “excessively happy” about life with chronic sarcoidosis and, this disease has taken plenty from me, just as it has anyone else who lives with it. I simply refuse to dwell. I also use my finely tuned, well developed coping skills to find answers to my problems, and perhaps most importantly, I don’t judges others for where they might be in this horrible journey we are all forced to travel.

Give anyone with this disease a chance to tell their story and you’ll be in tears in no time. This disease is a thief. It robs us all of physical comfort, emotional stability, financial security and quality of life. Not a single person with chronic sarcoidosis goes unscathed. We are all scarred. Our scars might be different but none of us escapes its wrath. So, when someone gets pissed off at me for sharing how I cope with stress, for believing that I can handle what this disease throws at me, for having enough faith to know that this is true, for using good humor in difficult times, for knowing that when I change my perspective, it changes everything, I can’t help but be taken aback. It means I am being judged by someone else who is suffering a similar fate.

It is pathetic to be judged by a fellow soldier in the fight against the trials of life with sarcoidosis but, it happens and, it has happened to me more than once. I’ve been told that I don’t know true suffering because I am not completely alone with this disease. I have been told that I don’t know true suffering because I don’t struggle financially because of this disease. These are judgements people have made of me, without facts. These are judgements people have no right to make and yet…

People also don’t really have the right to judge how I choose to look at my life since getting sick with sarcoidosis but some do and, some do so with an angry heart. I have scars. I have simply learned to live with them. I have pain but I have learned to cope with it. I struggle just like everyone else but, I have learned to make happiness a priority in my life and, I actually have this disease to thank for that. I make it a practice to be grateful, just like brushing my teeth every day, regular exercise and eating healthy. I know what my scars are and I know what they have done to me and what they teach me. I’ve learned to cope and by learning to cope, I’ve learned to be happy.

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Art Lessons

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I’m deeply grateful to the readers of my blog who have recently reached out to me, asking if I’m okay and where I have been. It’s nice to be missed and that my writing is appreciated. I’ve not been away for bad reasons. I’m okay, still fighting the daily ups and downs of this terrible disease, sarcoidosis…but I’m okay.

Taking a bit of time away wasn’t something I planned, it just sort of happened. I love writing and I have missed it but, I’ve recently found another new avenue to express my creative muscles. For some reason, unknown to even me, I got it in my head that I wanted to learn to draw, to become artistic in a new way. That’s where I’ve been. That’s what I’ve been spending a lot of my time doing. Learning to draw takes me out of myself which is why I think I like it so much, even though I’m not very good at it. Creating art has a way of transporting me to a place far outside myself, giving me a new outlet for escape.

Interestingly enough, art has also been teaching me a lot about life…things I probably already knew but forgot or things I needed to be reminded of and even some new things about the importance of patience and time. So, since this is what I’ve been up to and readers have wondered where I’ve been, I thought I’d share some of things I am learning through art because they also apply to life in general and certainly to life with a chronic illness.

Lesson #1: 

Enjoy the journey – This is one lesson that isn’t entirely new to me but it is a lesson that comes up as a theme in my life over and over again. Apparently, I am not a patient person. I have found with art that the process of creation is just as important, if not more so, than the finished product. I have also found that I tend to rush the process and that every time I do, the result is never as good as it is when I take my time and try to enjoy creating something. Joy comes when we are aware of our surroundings and embrace what is, instead of what was or what will be. The same is true when you are creating a new piece of art. When I am paying attention to each stroke of the pencil instead of focusing on the outcome, I make less mistakes, I actually have fun and the creative juices start to flow. This is a real life lesson. Living in the present, the here and right now, makes it easier to appreciate otherwise mundane moments and opens my heart in gratefulness for the life that I have now even if sarcoidosis had turned into a life I never planned on.

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Lesson #2: 

Problem Solving – This is something I am usually pretty good at but with art, it has been a struggle. Sketching is a new skill and I use the term “skill” loosely here as it applies to my artistic abilities but, there are times when you are creating something that you have to stop and think, at least that’s the case for me. Sometimes my brain doesn’t cooperate with my hand. I have a vision for how I want the drawing to look but dexterity betrays me. This is when I have to stop, take a step back and think about how to approach the drawing differently so that I can turn my vision into a real creation. Living my life with a chronic illness is much the same. There are times my body won’t do what my brain wants and yet, I still have to live my life and figure out how to function. Learning to draw has been a good reminder that there is always another way to figure how achieve my goals and accomplish what I set out to do.

Lesson #3: 

Mistakes can be a good thing – If you’re like me, you hate making mistakes. I’ve actually never heard anyone say they like them. Some people are more patient with themselves and others when mistakes occur but I’m not one of those people. I am more patient with other people’s mistakes than I am with my own but generally speaking, this is an area of my life that needs improvement. I was taking an art tutorial online the other day and the instructor said, “Mistakes are important in art because every mistake teaches you something new about your craft and your process.” I paused the tutorial and write that one down.  I’ve always understood mistakes teach us things, how not to be, but it never dawned on me that they also teach us how we want to be. Without the benefit of trial and error, we don’t learn. Brain fog and fatigue alone are enough to make me forget stuff and that puts me in a position to make plenty of mistakes. I now see mistakes differently. When my disease makes me do stupid things because of pain or shortness or breath, I will simply try to embrace them, understand them and instead of beating myself up, I will strive to do things differently. Mistakes are opportunities for personal growth.

Lesson #4: 

There is no such thing as bad art – If you like what you are creating, then it’s worthwhile. This is something art is teaching me that’s fairly new in my thinking and also applies to my life now that I live with a chronic illness. It is said that beauty is in the eye of the beholder and art is meant to be beautiful. What is beautiful to one person may not be to another. That’s okay. So, as long as I like what I am creating, it is meaningful because it is effort well spent. My life with sarcoidosis has changed in ways I never could have imagined and I have struggled to find meaning in it since I left my career and became a stay at home “dog mom.” I was defined by my career in ways that were woven into me. All that changed when my body and my brain decided it had other plans for me, plans I did not agree to. So, I’ve had to create a new life for myself and it is a constant battle for me to accept this change but, art has given me a new outlook. I am creating something new in life and, so long as I can find things about each day that are worthwhile, I can be happy with what I am creating, despite all of the things sarcoidosis has stolen from me. There is no such thing as a bad life, so long as it is lived with gratitude, peace and a little creative thinking.

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So my dear readers, this is where I’ve been and this is what I’ve been up to. I’m sorry that I was away so long. I guess I needed a break that even I didn’t know I needed. I needed to do something new and challenge myself differently so that I could broaden my thinking about what this life with sarcoidosis is all about and, how it impacts every part of who I am and what I do. It always will, it’s like a constant companion now, one I have had to learn to live with even though I haven’t wanted to. Thanks to my new artistic endeavors though, I have learned more about myself and how to cope with life in a body that has a mind of its own. I hope my “art lessons” have been as helpful to you as they have been to me and I’m sure I’ll be back with more of them as this new chapter in my life unfolds.