Redefining Success with Chronic Illness – by Ashley Boynes-Shuck

This will probably be one of the more honest blog posts that I’ve written to date.

The other day, I felt sorry for myself. I didn’t feel well and I wanted to simply scream. I thought about things that I have given up or missed out on because of my illnesses and health problems, and that, coupled with sheer physical and mental exhaustion, had me at a place where I wasn’t sure if I should laugh or cry. And so I wanted to scream.

I didn’t. Instead, I used the time I’d had alone at that moment to contemplate my life. I’ll be honest with you: sometimes I feel like I’m living someone ELSE’s life. Surely, the girl who won Most Stylish and Most Likely to Be Famous in high school, who studied Music Business in college, and whose dream was to move to NYC and be a TV host, best-selling author, or do PR or talent management in the music or fashion industries wasn’t the same girl who is sometimes ready for bed at 7pm, and who has had, to date, over 20 diagnoses handed to her on a silver platter. The same girl who has sat hooked up to countless IVs, who has had days where she was unable to wash her hair, and who has had more blood taken from her than a vampire’s lover, could NOT be the same girl who has interned at a popular radio station, hobnobbed with various celebrities, and who always dreamed of a “Sex and the City” lifestyle. The same girl who was an All-Star softball player could not be the same person who, at age 30, is a candidate for a knee replacement, and who has undergone 2 knee surgeries and a brain & neck surgery.  But I am. All of those things are me — and I feel lucky to be me, despite the difficulties that sometimes litter my path.

My entire life, I thought, “I’m going to be successful. Really successful. Cover-of-magazines and red carpets successful.”  I aimed for a level of fame and success akin to the Giuliana Rancics or Scooter Brauns or Rachel Zoes of the world — partially behind the scenes, but just famous enough. Being the next JK Rowling, though, did cross my mind, as well. Could I make it that far? Maybe that type of thinking was delusional, or narcissistic, but it was something I’d always felt in my bones – alongside the aching that comes along with rheumatic conditions.

The truth is, I have been successful – it just looks different than I’d thought it would. I’m not lunching with Oprah or sitting front row at New York Fashion Week, but I’m doing my thing as best I can. Even with multiple chronic illnesses that can sometimes be debilitating, I’ve been on television, in the newspaper, and in magazines. I’ve raised tons of money for charity, won awards, and spoken to Congress.  I’ve gotten my Bachelor’s Degree from The University of Pittsburgh, a nationally-ranking university, and a post-graduate diploma and certification from the Institute for Integrative Nutrition. I’ve made it into Mensa, traveled, participated in a kettlebell competition, and, I’d like to think, have done a lot of good in the world, in countless little ways. I’ve written a novel. I’ve met a lot of amazing people. I really can’t – or shouldn’t – complain.

I’m still in Pennsylvania, in a nice suburb, with a job that I love, a wonderful husband, and my 4 little fur-babies, in addition to amazing family and friends. My life isn’t super-glamorous, but it is exciting enough, and I’ve done more with my life while being sick than some healthy people will ever do, even without health issues.  And who knows – if I had been healthy and stayed my path, I likely would have never ended up with Mike, the love of my life … and THAT would have been a real tragedy. And a lot of these wonderful opportunities that I’ve been given may never have happened. I may have been healthy – but would my life have been as full? Would I have been able to see the compassion and kindness from others, had I never gone through hard times? Would I myself be as kind-hearted and compassionate, had these health issues not given me a BIG ego-check? I don’t know. I have to speculate that I was dealt these cards because I could handle it – and so that I could help others navigate the same waters. At any rate, I do feel that these illnesses have made me stronger, and have made me a better person, for which I am grateful.

My story is still being written, however. And someday, I may walk the red carpet alongside some of my favorite celebrities. I might live a glam “Real Housewives” kind of lifestyle, but, I doubt it. And I’m okay with that — because my version of success and happiness is not the same as theirs. We will all sometimes get thrown off course in our life’s journeys, but it’s up to us whether we want to keep getting lost or if we redirect and charter a new path. That’s what I’ve done.

I reminded myself that the media presents a very skewed version of average — a very “super-sized” version of success. I had to learn to get outside of my head and stop comparing myself to others. The people I compare myself to may not have health struggles, and I do; and I’d never wish health problems upon anyone, but I have to just recognize that the playing field isn’t always level – and that’s okay. Life isn’t always fair. There are people who are more fortunate than me, but I’m also more fortunate than many, dare I say most. And I know that. While my shoes may not be high heels anymore, and while each step may sometimes be difficult, there are plenty of people who would kill to be in my shoes, nonetheless.

That still doesn’t mean it’s always easy to be me — but I’m not whining. It’s probably not that easy to be anyone, after all. No one ever promised us that our lives would be easy, though. No one said that our lives would be perfect. So why do we expect them to be? We ALL have our own cross to bear. For some people, that’s health problems. For others, it is something else. You really don’t know what others are going through. The definition of success should mean making the best out of the life that YOU have been given. Stop letting others define success, happiness, or beauty for you. Define it yourself. Don’t compare. Don’t dwell.

How dare we (and I include myself in on this) gripe about the hand we were dealt when we are still better off than many? It is human to slip up and “whine” or vent here and there, on occasion. It is healthy, even. But if complaints outweigh laughter, if negativity outweighs gratitude, if insults outweigh compliments, if bitterness outweighs joy … then we are not doing ourselves or our lives any justice at all. EVERYONE has their own cross to bear — some more than others — but we are ALL equal when it comes to having a CHOICE about how we react. We decide how we live. And some days, that choice is harder than others, or we may feel as though we have no choice at all.

I am still learning this, as I am not perfect. I am human. I am sometimes angry or sad. I am sometimes fearful. I have bad days. Sometimes, little things will make me weep. I get bothered when people make offhand remarks, not knowing that they seem insensitive or hurtful given my personal situation. I wish I could run a 5K or a half-marathon with my friends. I wish I could keep up with some of the people at my gym. I wish that my body and its immune system worked the way that it was supposed to work.  I wish I was as physically fit as my husband. Sometimes, I wish I could have a real bagel, or wear stilettos again. I would love to not have to spend so much money on my health. Sometimes I do daydream about Manhattan.

I would love to just have energy, too …energy to work full-time, and still freelance, and care for my pets, and work on my novel, and do volunteer work, and keep a clean house, and cook gourmet dinners every night, and work out every day and still look and feel wonderful while doing it all. I admire people who can achieve all of that, and say “more power to you.” I sometimes let certain areas falter, so, if you come visit and my house is a mess, you now will know why. There are days that I can barely get out of bed and make it to my office job, days where even working from home drains me, and so I wonder: how would I have fared in that fabulous jet-setting, always-on-the-go entertainment industry career I’d dreamed of? The thought is almost laughable, and so it is a probably a blessing that I’ve found a flexible, satisfying, and rewarding job close to home.

I don’t LIKE that I’m sick. I’ve accepted it, but have not succumbed to it. (There is a difference.)  I try not to play the “what if” game anymore. Mostly, I would just love to not have to worry about my future. It would be great to not have to think about or talk about my health, or blood tests, or lab results, or what supplement or treatment is next in the pipeline. I’d love to not have to discuss the intricacies of my illness with people, only to be met with blank stares, anyway …. and it would be nice to not have to qualify statements by ending them with, “…if I feel okay.”

I’m learning not to use my illnesses as a crutch, but am also striving to listen to my body, too. So, I’m trying to say no when I need to, but to say yes when I can. I so wish to be “normal,” but really … normal doesn’t exist. We are all unique, and we are all our own norm. So be your best you. Champion yourself. Your normal and my normal won’t look the same. Neither will our failures or successes.

I’m trying to keep my life in perspective because, aside from my health problems, it is AWESOME. I am very blessed and very lucky, despite not being where I thought I would be, both literally and figuratively, at this point in my life. You know the saying, “if you want to make God laugh, tell him your plans”? That is true. We don’t know what the future holds and sometimes must let go of the life we’d imagined, to make room for the life that awaits us.  We’ll all have good days and bad, but if you have people by your side who care, through all of life’s ups and downs, then I’d say that your life is a success, without a doubt.

But go ahead and scream if you need to, have a “woe is me” moment or two … but let that feeling pass. You are bigger than your illness, and your life’s expansive value isn’t measured by the sickness that is just one small part of you. Neither is your value measured by how famous you are, or what size you wear, or who made your handbag. To me, an average person who has persevered despite health problems is far more impressive than a model in the magazines or an actor on TV.  I encourage you to do what you can, when you can, with what you were given, and implore you to be a steward of your health and your happiness.

Accepting this responsibility and being accountable to your own life is a task that, for me, defines real success … red carpets, or not. And perhaps, I’ll still see you from atop the New York Times Bestsellers List, one day. After all, I’m here. I’m only 30. I have time to try to reach even more of my dreams, and I shouldn’t let my illnesses get in my way of that — nor should you. Your destiny may be altered, but it’s up to you to still try, even if you have to change your game plan or modify your goals.  Remember, we are not promised tomorrow and should be grateful for each day. So let’s all take advantage of each chance we get to grow further into the people we were meant to be. It’s a wild ride … but worth it.

 

UPDATE: As serendipity would have it, I got THIS (below) in the mail hours after writing this … the Universe’s way of reminding me that I do have successes, big and small:

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Be Well,

Ashley Boynes-Shuck

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8 thoughts on “Redefining Success with Chronic Illness – by Ashley Boynes-Shuck

  1. Very well said, You are an inspiration to many. You may not realize it, but you truly are. In this month of Thanksgiving, I want to thank you for all you do.

  2. I totally identify with this! Thanks for being honest about how high you really wanted to go. Me too. Graduated 1st in my class in law school at 24 and then life altered forever with a spinal tumor at 32. Years later I am still adjusting. Happy some days and pitching a fit that this is my life on other days.

  3. This post really resonates with me. I had huge plans, including completing a Master’s program. But 6 surgeries in 5 years, I was lucky to complete my Bachelor’s. You’re totally right, with chronic illness success looks much different. Having JRA since the age of 2 (going on 24 yrs now) I could reasonably be in a wheelchair but I’m not, I’m still fighting the good fight as they say. I really love this post, thanks for the positive thoughts and reminders in it.

  4. I’m glad you wrote and honest post! It’s so true to life and so many of us can relate 100%. It’s so funny how similar my story is to yours. I did have the opportunity to move up to manhattan for a year, but then had to move back to Pgh (in my parents basement) because of my health. I feel like screaming a lot, but learning to focus on the positives and try to do some good. Thank you for being so real!

  5. Thanks so much for writing this. I am 39 and have lived with RA for 22 years. Like you I had big plans for my life and it didn’t go quite as planned but I have managed to have success despite my illness. I am preparing for a hip replacement Dec 2. I haven’t been able to take my meds and I feel like crap. I have had a lot of self-pity days but your post reminded me that I’m enough just as I am. Thanks for sharing

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