Why It's Important for Me to Have Heroes in My Life With Chronic Illness


I don’t like to say it out loud very often, but living with a chronic illness and fluctuating levels of disability is extremely hard, in what sometimes seems to be nearly every way imaginable. There is physical and emotional exhaustion, as well as multifaceted, excruciating and never-ending physical pain. I’m also navigating through an ever-changing process of grief and acceptance as I come to say goodbye to different aspects of the past as my body and its abilities and limitations change.

It can be isolating – sometimes it feels like I’m living in a weird limbo suspended between the societal groups of “healthy” and “ill” where I have a hard time relating to others and vice versa. I often face judgment from people who don’t understand or are afraid of illness. Then there are my own personal fears and worries about what the future with a degenerative illness may bring. Every day is challenging in so many ways, and then, like anyone else, I also have bad days. On those days, it’s because of my heroes I can keep pushing through and find a way to keep my light shining.

 

I’m not talking about your standard textbook hero. Let’s forget about the knight in shining armor riding to the rescue. I also don’t necessarily need Superman, Spiderman, Wonder Woman or anyone else to swoop in and save the day. However, my personal heroes are there to help me out when I need it. They don’t have capes, masks or even superpowers, but their ability to help me find the motivation and support to keep pushing onwards is the greatest power of all.

I have a list of various heroes: family, friends and even people I haven’t even really met but who have nonetheless impacted my life. With all of these heroes on my side, whether they know it or not, I am bold, I am self-appreciative, I am ready to take on the scary steps of pushing on. With them, I can move forward with things I can’t do alone, whether it’s new medical treatment, pursuing personal or career goals or finding a smile on a rough day.

Here are a few of the heroes in my life who I know personally:

My Grandmother

There are so many reasons I look up to my lovely Grandma: her work as a nurse, her kindness, her no-nonsense attitude and the fact that no matter what kicks her, it never manages to knock her down. I really don’t think there’s anything I could say that would do her justice, she’s just that splendid. She had breast and bone cancer but she seemed to beat all of the odds and make it another 28 years and counting.

Since the cancer, she has been in such terrible pain and has multi-faceted health problems. She taught me what it is like to be chronically ill and has offered me advice and support along the way. Through her I learned tricks about conserving energy, dealing with chronic pain and, most importantly, knowing and trying to accept my limitations. She helped me realize I shouldn’t compare myself to healthy people, nor should I listen to the judgments of others, and that has helped me drastically in many ways. Unbelievable pain and its limitations are a constant in her life, but she keeps moving on with that “I’m still here” attitude, finding plenty of smiles along the way.

My Twin Sister

From being there to literally catching me when I fall to answering my weird medical questions or simply offering me a shoulder to cry on, she is the epitome of a hero to me. I’m sure I’m not the only one, as Nurse Liz is there to help her patients and their families through the toughest of times with expert knowledge and care, as well as unique understanding and empathy. From bouncing back from a traumatic brain injury when she was 11 to pushing through many struggles as a teen and young adult, she can relate to people’s struggles and find just the right words or actions to help them through it.

Just recently, and quite unexpectedly, she started showing symptoms of the same genetic disease as mine, and boy, did they hit her hard. I could not be prouder of how she’s handling it; she’s reached a place of acceptance and peace that took me years to find. Her hard work in the last year to try and combat the symptoms and gain strength to prevent further ones from manifesting is truly inspiring. She has completely changed her life and this perseverance and motivation kind of goes both ways, as seeing her forward strides pushes me to go the uncomfortable route of jumping back into doctoring and investing in the long, hard and unsure path of trying to find new ways to manage my illnesses.

My Friend Lisa

I’m pretty sure I haven’t met a more caring, funny or positive person. After knowing me for a total of maybe only three minutes, she hand tailored a topical cannabis cream to help me manage my chronic pain. She’s a total badass with multiple sclerosis who pretty much lives by the mantra of “Pain sucks and whatever I can do to help others with it is my way of giving back.” Without her, I’m not sure it would have been possible for me to transition out of a wheelchair and be as active as I am now.

When I first met her, she invited me to her home to create a recipe that has helped me more than any other medication I’ve tried. At the same time, she opened her heart to me and I count her a very dear friend. That first time I went to her house, I didn’t leave with just the pain cream; she also gave me a rollator walker that was a perfect fit for me. She wouldn’t take anything except a thank you and a hug in exchange for it, simply saying, “I knew I was holding onto it for some reason.” That rollator was crucial in helping me to walk again, and it was something I couldn’t afford at the time. Also, every time I look at it, it seems to give me strength.

And here are some heroes I don’t really know but still look up to:

Alyssa Seely

This Paralympic triathlete won a gold medal at the Paralympics in Rio 2016 and is also a two-time world champion. She is so many kinds of cool, and we share a couple of diagnoses which I find kind of neat. A few of hers are Chiari II malformation, basilar invagination, and Ehlers-Danlos syndrome, and she has also had her left leg amputated below the knee. I don’t just admire her perseverance and how she constantly blasts beyond others’ expectations, but also her motivational speaking and how she’s spreading awareness for people with health problems and disabilities. I will not be able to swim or run again, but knowing she’s out there training despite her muscle weakness, spasticity, imbalances and other medical struggles helps me to push through my physical therapy exercises and to do everything to the best of my abilities.

Lara Bloom

The international executive director of the Ehlers-Danlos Society champions awareness and proper medical care for people with my condition and others like it, and she’s doing this all while managing EDS and its comorbidities herself. Her expert-level training in medicine research and development, her impressive speaking skills, moving documentaries and overall patient advocacy are helping people all around the globe. She tells everyone to find their own personal marathon to challenge themselves with – what is an appropriate goal for your body and circumstances that will both push you and help you? I thank her for opening up and sharing so much of herself, her deeply personal stories and committing so much of her energy and time to making people’s lives with EDS and HSD better and more manageable.

The Everyday Heroes

The small actions of others can really make a lasting impact in my life, so I count many people to my list of heroes, no matter how fleeting our interactions might be. There is the kind stranger on the bus who offers me their seat. The people who listen to me before judging me. The friends and family members who offer a listening ear, helping hand or warm meal when I need it. And of course, there are the other people with chronic pain, chronic illness and/or disability who are dealing with everything that comes with their medical conditions as well as any prejudice that tags along for the ride. Seeing other people dealing with their struggles helps me out, since all of us, disabled or not, have our struggles and challenges to face, and just seeing people working through them helps me to keep pushing through my own.

One last note on what heroes mean to me:

The word “inspiration” or “inspiring” can end up being a bit of a double-edged sword for some people with disabilities, because, even if it may seem surprising, being told we’re inspiring isn’t always a happy-making comment. It can sometimes be really nice, but other times it can end up seeming patronizing or superficial. Like anything, this isn’t true for all of us, but for me, it’s not always something I enjoy hearing. However, it’s nice to hear from someone I’m close to, or from someone who backs it up with reasons why, and then I feel all warm and fuzzy inside and flattered in the best way possible.

Because of my weird relationship with the label of “inspiring,” at first I was a bit uncertain how I felt about allowing myself to have heroes. But after a while, I realized they are indeed very important and helpful to me; I look to others for inspiration, and I’m very happy to have them there for me. It is looking up to these people, these heroes of mine, and feeling supported or inspired by them which makes me ready to face another day, to try something new, to take a new step in life. Through them, I find the strength to push myself towards my dreams, no matter how scary or uncertain they seem because of the challenges and unpredictability of my various chronic illnesses. That is what heroes mean to me – inspiration, strength and support – and I’m very thankful for the boldness I can find within myself through their help.

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Thinkstock photo via rudall30.

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