Maintaining a positive attitude is my goal each day when I awake. I generally do a pretty good job of living well despite my chronic diseases; but I am a fallible human being with emotions and physical sensations. I experience stress, sadness, anger, and helplessness just like you. I have a wonderful support system and many coping strategies at my disposal, so I can usually get through any situation. Recently, though, I took the step of finally applying for Social Security Disability and boy has it knocked the wind out of me.

The online application, the first phone call to verify my demographic details, and the hand-written functionality survey were exhausting, physically and mentally. I fretted over every answer, worried that I wasn’t being clear enough, hoped that I hadn’t forgotten any important details, and feared that I would neglect to say the one magic word (or hundred magic words) that would show them how hard it is to live with my diseases.

I had no idea that failing to apply back in 2007, when I was no longer able to work, would affect my ability to get disability in the future. (Word to the wise, don’t delay in applying like I did. I have to prove, in retrospect, that I really was as sick then as I know I was, because my work credits for SSD have expired.)

Compounded with the financial stress my husband and I have endured due to my medical bills is the urgency and desperation that we really need this help…and now. I’m also struggling with shame and disappointment that we can’t manage all of it on our own any more.

But isn’t that the crux of living with chronic illnesses? You can work hard to keep everything balanced, to stay ahead of financial ruin; and then after years of  “making it work” the gravity and cumulative effects of the bills, loss of income, and “extra” expenses you take on to try to stay healthy all come crashing down around you. I don’t even recognize my own checkbook.

Like many of you, we’ve had to make some tough choices recently, ones that are really uncomfortable and feel incredibly unfair. My husband makes a great salary but even great salaries pale in comparison to medical bills and all of the other little accommodations we have made and losses we have sustained to keep me alive and relatively well. I look around at healthy people and wonder why it is that we have to struggle so much. I ache to have some normalcy, a moment when we aren’t stressed. My books are just coming out, and hopefully they will add income, some day, but that takes time and we have bills to pay and a family to feed right now.

I’ve walked around in pain, literally and figuratively, for the past week, not sure what was going to happen, and again, worried about the outcome. I actually strained and pulled arm, hand, and back muscles in the physical act of filling out a 10+ page paper application. I know in my heart of hearts that I have done the best I can to present my case to them as thoroughly, honestly and openly as possible. I filled out all paperwork to its fullest and attached another 10-page typed addendum detailing the past 20 years of cyclical pain, weakness, fatigue, surgeries, loss of eye sight, difficulty with daily tasks, etc.

And so, today, I had to make a choice. I had to let it go. I had to give my faith to the Universe that everything will be okay and that I have done everything I need to do at this moment. But to do so, I had to make a change, disrupt my behaviors and my thinking. So I painted. I immersed myself in something I love. I redirected my energy from fear toward joy. I breathed deeply with each brush stroke and imagined my pain flittering off into the wind. When I finished, I half expected to see my blood and guts on the canvas, but instead the painting before me, “My Starry Eyes,” was happy. It was light, it was a representation of who I really am, and I felt filled with gratitude.

I hope the next time you feel yourself being swallowed up with fear and pain you will find your own creative outlet. Sometimes you just have to paint (or sing, or dance, or draw, or write, or craft, or sew) to survive.

Originally printed on (2015). All Rights Reserved.

My Starry Eyes

My Starry Eyes