I see it; that look on people’s faces when I limp by that lets me know I am being pitied. A few times, people have actually asked me, a stranger, why I walk with difficulty. I always answer. I say, “I’m not drunk or anything just more sick than I appear with an autoimmune disease.”
I struggle to work as regularly as I can because there I’m treated like every other journalist. I handle a full work load of stories; on average between six to ten different ones a day. I’m often bombarded by offers of help to get everything from my wire copy from the printer to my lunch; that is now that everyone there knows what I’ve been facing for twenty years. And, they only found out because I wrote a book about my experiences. The biggest drawback is now people seem to worry about my ability to make it through the day even when I’m perfectly fine. The concern is sometimes followed with phrases like: I don’t know how you do it; I wish you could retire and rest; and are you sure you okay because it’s okay if you can’t make it? I know people think they’re being kind but really, the constant second guessing or as assertion that I should be home in bed instead of living the life I’ve been given, is deflating.
Sure I get, how on the surface, a person could fee I need pity or I don’t have a lot to be thankful for. I wake up every day in pain and each day is different. My eating schedule is dictated by the mountain of pills I take to function normally. Yes, it’s true it’s hard for me to walk, my hair hasn’t really grown in five months, my weigh constantly fluctuates, scars riddle my skin, I’m incapable of having a child and the endless stream of doctor visits, procedures, cancer biopsies, and prescriptions have almost bankrupted me several times. In addition to all that, I don’t even get me to try to remember the last time I’ve had a vacation.
Still, I don’t focus on that. I think about what I do have. I have a job as a writer, something I’ve wanted to do for a living since I won a bubblegum writing award in second grade. I write about and record both the highs and lows of world history. My words will be remembered when people think about where they were when President Obama was elected, Michael Jackson and Maya Angelou died, when the northeast had a blackout, when the war on terror began and nearly everything else in the last twenty year. Knowing what I do fuels me to wake up, fight through the pain and inform the world. It also reminds me that I was blessed with a beautiful mind that just happens to be trapped in a frail body.
So, as I race out to see my family I’m really thankful for my autoimmune disease. Having my chronic illness has shown me the depth of my physical and mental strength. It’s also helped me figure out who my real friends are; those who will go beyond social media to provide emotional and physical support when I’m at my I’m at my weakest. I’m equally grateful for virtual friends who read my every post and respond, encouraging me never to give up.
Beyond all that, my autoimmune disease has taught me to appreciate the days when I can do what I want. I try to pack those days with service to others and making sure I’m happy too. The uncertainty of my body’s abilities has also helped me prioritize parts of life; meaning how much time I’m willing to spend at work versus time with my loved ones. I can assure you it’s shifted in favor of the latter.
More importantly, I’ve learned that despite all of my obstacles I’m still better off than so many in the world. I have job, I have family, I have a home, I have a man who loves me in the worst of times and I have faith; those things have and will continue to allow me to see why I must give thanks every day.
Follow Nika C. Beamon on Twitter: www.twitter.com/NikaBeamon