I watch the flicker of the light for a few minutes while everyone sings. It’s so mesmerizing, I can’t hear anything around me other than the sound of my own breath. I stare at the fire as it dances playfully, almost taunting me as it reminds me that another year has passed. I close my eyes for a few seconds before I inhale and blow out my candles. My first thought: how many times I felt like the span of my life was as fleeting as the length of time a candle stays lit. Doctors told me I wouldn’t make it this far. Others reminded me time and again how close and how many times I was near death; it was so frequent, sometimes, I felt like I was on borrowed time.
My second thought is often about how I proved my numerous physicians wrong. I have valiantly faced every obstacle placed before me. I’ve literally learned to walk, talk, see and hear again as an adult thanks to a body ravaged by an autoimmune condition.
Once I clear my mind, I think about what I should wish for. I suppose, my friends, family and even strangers would guess I’d ask for better health but I never do; although I often hope for greater gap between my flare ups and hospital visits. I don’t ask for a longer life either but I do end my wish by thanking God for the time I’ve had. Sure, I should probably ask for more sales for my books so I can pay medical bills, take a vacation or just give myself some relief. But, I don’t do that either. I’m just grateful that I’ve sold enough copies to know someone other than people who know me own my work.
No, actually, when I blow out my candles I make the same wish every year. I’m not superstitious so I can share my real request. My wish is simple; it’s that I am remembered for making a difference.
I’ve long suspected I may not outlive my loved parents, siblings or most of my friends. I’ve only prayed that I live as long as I can, as well as I can and love as deeply as I can. And, I pray that I am the best daughter, sister, aunt, friend, co-worker, fiancée, and human beings I can. Of course, I do occasionally fall short. Still, I try to continue to better at all roles.
So, in the same spirit in which I live my life, I don’t just hurl my wish into the universe and wait for it to be fulfilled. I work hard to create memories, to volunteer my time, to be there for loved ones and to craft stories that tell my life story. I don’t do it because I think I’m particularly remarkable but I know my journey to being at peace with my mortality, my illness and my faith are all things that may help someone else facing similar circumstances.
On Dec. 17, when I go to blow out my candles again I will again re-examine my master to do list, which contains all the things I want to accomplish in this life before I go. I know I’ll be able to check off a few more things. Then, I’ll stare at the delicate flames, close my eyes, say thank you for all that I have and wish one more time that someone, anyone, will remember I was here and feel my loss because I made a difference.
Article Originally published on the HuffingtonPost.com: http://www.huffingtonpost.com/nika-c-beamon/when-i-blow-out-my-candle_b_8714358.html
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An Interview With Writer Nika Beamon
Nika Beamon is the author of Misdiagnosed: The Search for Dr. House; here is a link to her website:
Q: What is Misdiagnosed: The Search for Dr. House about?
A: Misdiagnosed: The Search for Dr. House is a memoir about my 17 year quest for the correct medical diagnosis. During those years I visited 22 doctors trying to figure out why my body was suddenly failing. Most times, I was treated for whatever symptom had presented itself rather than the root of my problems. However, when my doctor told me I needed a surgical biopsy due to suspicion of lymphoma, I decided to take my health into my own hands and find a master diagnostician like the fictional character, Dr. Gregory House, from the show House, M.D.
Q: What inspired you to write the book?
A: I was inspired to write the book by a co-worker who knew my medical woes and thought my story might inspire others. So, I opened my heart and my brain and emptied both on to the page. I think I ended up with a brutally honest and informative tale. It not only reveals everything I went through but also shares tips so others don’t have to endure my fate.
Q: Why do you think there is so much misdiagnoses in hospitals today?
A: I think there are a host of reasons medical mistakes occur more often. The length of appointments are shorter so both doctors and patients feel rushed; that means patients ask fewer questions, share less symptoms and are quickly told test results, often with little or no explanation. More people are going to quick clinics where doctors don’t a patient’s medical history and are only doing a quick exam. Additionally, increased health care costs mean the price of diagnostic tests are out of range for some people and are refused more by medical plans.
Q: What can people do to avoid having this happen to them?
A: The best thing you can do to prevent medical mistakes is to keep a complete, update to date medical record. You should also keep a journal of symptoms to share with your doctor, write down any questions you may have to give to your doctor if you can’t ask them. If you’re uncomfortable going alone, you should take someone with you who can be an advocate. You should ask for a copy of test results which you can check online. If your doctor doesn’t seem to listening to your concerns, don’t be afraid to find another one. Look up the best doctors and hospitals in your town based on your ailment and if they can’t help you, search the country or call organizations focused on providing awareness about your ailment. If that doesn’t work, contact the National Institutes of Health or the National Organization of Rare Diseases to see if they can help. Most important of all, never give up.
Q: What kind of research did you do for the book?
A: Researching my book was easy because I’d actually been researching autoimmune diseases for years. I did reach out to other authors who had written about various illnesses, as well as Dr. Robert Lahita, who had also contributed to the bestseller Brain on Fire. Dr. Lahita reminded me to educate people more about my condition and told me how complicated diagnosing autoimmune diseases can be for doctors.
Q: What issues in health care would you like to see the mainstream media cover that they are not covering at this time?
A: I think the media often glosses over the fact that medical misdiagnosis now is the third leading cause of death in the US, claiming about 400,000 people each year. Even when people are told this they aren’t given the skills to avoid it.
Q: Who are some of your writing influences?
A: Actually both of my parents are fantastic writers so that was an early influence. As I entered high school, I became a fan of poetry. I tend to like more true stories so I read a lot of memoirs.
Q: What have you done to promote your book?
A: When I began promoting my book, I started with traditional reviews in Kirkus, Publishers Weekly, IndieReader, etc… Then, I expanded out to blogs and online radio shows. Eventually, I began writing blog posts for the Huffington Post.
Q: What sort of job do you have and how was it influenced by your medical problems?
A: I am a TV News Writer/Producer at the number one local news station in New York so I write for a living. I’ve been sick since I was 17 so I’ve always coped with a trying to build a career in a highly stressful and damaging industry. Early on, other than the fact that I took pills, it was easy to hide my condition. However, as I’ve gotten sicker and procedures have become more frequent I had to tell my co-workers about it. Usually, I use my vacation time to cover medical leaves. Otherwise, I work as long and as hard as my healthier colleagues. I’m certain my illness has stopped me from pursuing my responsibility at work but as I age, I realized that’s a blessing in disguise.
Q: Are there any laws that you would like to see changed or enacted that would pertain to doctors misdiagnosing patients?
A: I don’t think a law is the answer to the problem. I think making sure doctors are taught to have a bedside manner, take more time with patients and to err on the side of caution would be best.
Please note; Eliza’s interviews are done by email. All answers are unedited and come right from the lovely fingertips of her subjects:)
Originally published on: http://elizagalesinterviews.com/2015/12/02/14768/
It’s said that laughter is the best medicine. So it’s no surprise that after a particularly challenging flare up, of what I now know to be the rare autoimmune condition igG4 related systemic disease, I turned to a bootleg copy of the newly released Kings of Comedy for relief in 2000.
I was mildly amused until Bernie Mac came out. He didn’t just tell jokes, he told stories laden with humor; that’s what had me hanging on his every word. The only paint I felt during his set was my sides aching from laughter.
Like millions of Americans, I went on to watch his show. But, I saw things many others may have missed. As a person taking prednisone to keep my condition under control, I was aware that he looked like me. What I mean is he starting to develop “moon face;” the kind of bloating associated with the steroid prednisone. I didn’t know what was wrong with him but I knew there was something.
I became a fan. I watched him play supporting parts in movies like Bad Santa and I yearned to see more. Sadly, there wouldn’t be much more. My mouth hung agape like nearly everyone else when I learned he died at age 50 of Sarcoidosis.
I unfortunately knew way too much about Sarcoidosis. For years, I underwent repeated chest X-rays as doctors tried to attribute my symptoms to that disease because it’s prevalent in African-Americans. I didn’t have it but unfortunately he did.
Nearly six years after his death, when I was writing my memoir about my own battle with an autoimmune disease, I reached out to Bernie’s widow Rhonda McCollough. She did know my story but she knew the havoc his condition wreaked. I shared my manuscript with her and she kindly agreed to write the forward to my book, Misdiagnosed: The Search for Dr. House. In it, she discussed her fight to get Bernie to keep him alive. Although, she couldn’t save her husband, she wanted to save someone.
Unfortunately, when another surgery made me doubt my survival I put out my book without her forward. But, I remained in touch with people from the foundation Bernie established to educate about the disease that robbed the world of his talent.
So, in honor of what would’ve been Bernie’s 58th birthday, the Bernie Mac Foundation is asking everyone to wear purple on October 5th. Purple is the color of Sarcoidosis awareness. I’m going to wear it; that’s the least I can do to repay him for all he gave me. How about you?
About the author:
Nika C. Beamon is a journalist working in New York. She is the author of the memoir, Misdiagnosed: The Search for Dr. House, about her 17 year journey to find the right medical diagnosis while balancing a relationship and career.
In 2009, Chicago Review Press published her first non-fiction book, I Didn’t Work This Hard Just to Get Married. She is also the author of two mystery novels, Dark Recesses and Eyewitness.
#BernieMac #Sarcoidosis #autoimmune #NikaBeamon #health #BlackTwitter