“My soldier” is the nickname I’ve given my little sister, Melanie. It’s not a nickname that will ever change… even if I wanted to change it, it’s tattooed on my wrist so I can’t! At just 10 years old my sister was already inspiring and changing me, her 16-year-old sister. As you may have noticed, I missed a blog post last week and that’s because I just wasn’t ready to post this story yet. I needed to make sure everything I wanted to say was included and it read in a way that honored Melanie the way she deserves to be honored. I hope I’ve done that.
Melanie has taught me a lot of life lessons with the way that she handles herself despite everything that has been dealt to her. When her life made a sharp unexpected turn left off of the road of care-free childhood and down a dark twisty road of chronic pain and invisible illness, her mindset didn’t change. HOW? How was a 10-year-old girl able to remain so strong and so positive? How could I be more like her? How could I show her how brave she is? I wasn’t sure, I’m still not sure. She deserves a lot more credit than I’ll be able to give her in this lifetime.
This post is to honor Melanie and to highlight just 5 of the million life lessons that she has taught me through her journey of chronic illness and pain.
If you haven’t heard Melanie’s story you can read a full version HERE. I’ll give a brief synopsis of the past 7 years of Melanie’s life before I go into my post here:
In 2010, my sister suffered an ankle injury at a birthday party. This ankle injury wasn’t a simple one the injury resulted in Complex Regional Pain Syndrome (CRPS), but this was not a known element of the story until weeks after the injury. CRPS is a condition that leaves the injured portion of the body in overwhelming and excessive prolonged pain. My sister has described her pain as feeling like her left foot to knee is on fire or that she’s being stabbed over and over, all day…non-stop. CRPS also causes the affected part of the body to go through other physical changes such as temperature changes, color changes, and hair loss. Along with what you can see, there’s a lot you cannot see. One of the major things being allodynia, or hypersensitivity to touch. Instead of a painful stimulus inflicting pain, with CRPS normal stimuli inflict pain. For Melanie that may be the air from a ceiling fan, the cold temperatures in the freezer aisle, or a blanket swiping against her bare foot. So if these normal stimuli are painful to Melanie, just imagine how much more pain the painful stimuli inflict.
After the injury Melanie refused to walk on her foot, she wore a walking boot and used crutches to limp around the house. My mom knew something wasn’t right despite being told by a physician it was just an ankle sprain and she’d heal with time. I’m so proud of my parents for knowing something was wrong, that something was off and for speaking up on it. This ultimately lead to a (delayed) diagnosis of CRPS. Two years following the initial injury Melanie had a gastric stimulator implanted to help improve her gastrointestinal function due to her additional diagnosis of gastroparesis (stomach paralysis.) As time has continued to the pass over the past 7 years additional puzzle pieces started to get added into the mix, syncope, migraines, fatigue, and general malaise it was ultimately discovered that Melanie has a genetic mutation which predisposed her to CRPS among other things. Melanie now has a laundry list of doctors and surgeons along with a list of medications and equipment required to function “better” on a daily basis.
Now that was a brief summary, I could write a book but that’s not the center point of this post so let’s get to the positive life lessons shall we?
1 – My soldier taught me how to speak things into existence
The easiest way to describe my sister is as a soldier, a warrior, a believer, a fighter, an inspiration! With everything thrown at this girl she is still always overcoming obstacles and accomplishing new things. After her diagnosis of CRPS, she learned how to surf…who does that?! Melanie never limits herself. Whatever she wants to do she’ll find a way, some modifications and adaptations might have to be made but it will get done. That’s the mindset I’ve stolen from her for myself. It got me where I am today as a physical therapy student at the University of Miami, I wanted to do it and I found a way! Melanie always says she will own a bakery one day designed for people with special dietary needs and sweets loves alike and I would bet my savings (haha, I’m a DPT student, what savings?) on the fact one day Melanie Marie’s Bakery will be open and in business within the next 10 years. Melanie always pushes herself to make her dreams happen and I think her diagnosis made her even more determined to prove to anyone who doubted her that she can make any of those dreams happen.
2 – My soldier taught me to be more open-minded
Sadly, it’s inevitable that any time I go out with my sister for either an outing in her wheelchair or just using her handicapped placard to park at any given place, she’ll get “the look.” This look is something I developed the eye for. “The look” usually gives off a vibe of wondering why a girl who looks perfectly able-bodied would be in a wheelchair or under worse circumstances, it gives a vibe of being ticked off that a teenage girl is “illegally” parked in a handicap spot. Either way, it breaks my heart to know that my sister is looked at differently. She has said before she’d rather someone just ask than to point and stare…and judge. At this point in my life I’d like to think that myself and my family along with anyone close to Melanie (or anyone close to anyone with invisible illness) are hyper-aware to being the open-minded person in these situations, but was I before? Did I used to be the girl giving “the look?” Maybe I was that girl… and if I was I always had innocent intentions. Melanie’s position has taught me to be more open-minded A.) to people with invisible illnesses like her but also B.) to the people who give “the look” because maybe they have no knowledge of invisible illness. Which brings me to my next point!
3 – My soldier taught me to be an advocate
My sister will be the first one to defend herself, and to me that is pure bravery. I am quicker to defend her than I ever would be to defend myself but not Mel, she has confidence in herself and her own abilities. It’s admirable. Melanie’s support base is ginormous and it continues to grow each year through a huge advocacy project my family started almost 8 years ago. Crazy Sock Day is celebrated every year on January 24th, the day that Melanie suffered her initial ankle injury, as a day to turn a negative experience into a motivational celebration. Crazy Sock Day also serves the purpose of raising awareness for invisible illness. All you have to do is wear crazy socks and post them to social media! We have a Facebook and Instagram (@crazysockday) page and each year we create a hashtag so that people all around the world can support Melanie in raising awareness, from their homes! My family decided to take it a step further and we created Crazy Sock Walk almost 4 years ago as a physical gathering to raise awareness and donations for the U.S. Pain Foundation. I naturally stepped into the role of advocacy and Melanie made it easy to be someone I wanted to advocate for. I’m so grateful that I’ve been able to “practice” advocating for my sister before even becoming a physical therapist, I hope to be an amazing patient advocate when I’m in that position!
4 – My soldier taught me not to always ignore the bad
As a big sister, seeing Melanie in this amount of pain all the time is heartbreaking. What was worse though was that over time the pain started to become “normal” or as what we call it “a baseline.” One day the screams from the bathroom as Melanie took off her socks and shoes to take a shower wasn’t so ear piercing. That was what really got me. How could I have become numb to the pain my sister is going through? The guilt I feel for this can be heavy. In general, I often times try to pretend in my head Melanie is “okay”. I know that she’s in pain every single day but I also know that she is loved and strong. As much as that mindset comforts me, I’ve learned that the pain can’t be ignored. Melanie is going through this every single day and she deserves both recognition and comfort for the real pain she is suffering. Often times when I am asked “How’s Melanie doing?” it would be much easier to reply “Good, thanks for asking” but instead I’ve learned to try to be a little more truthful. The more I (or anyone) tell little white lies to comfort whomever is asking about chronic pain and invisible illness by pretending everything’s okay, the less help and awareness is brought to the cause. Even though Melanie is smiling every day, her pain still needs recognition. My job as a sister has been to be realistic with what she’s feeling and help her find balance between giving the pain too much power and not giving the pain enough power to make a difference.
5 – My soldier taught me to enjoy the little things
But, how did I become numb to the pain and hurt? Because of Melanie’s amazing attitude. This girl is truly a soldier. Like I said, she smiles through every ounce of pain. Despite the fact that Melanie has little control over her body, she has full control over her happiness. Melanie could be in the hospital recovering from surgery in an immense amount of pain, missing her friends at school, and wishing she was at home with her puppy but the second you gift her a stuffed animal, or bring in a service dog, or I video call her she’s happy! She has the ability to flip the switch to happiness over the smallest things and I truly admire that. Yes, she has her bad days but she never dwells on them. On the worst of days she’ll always find the silver lining even if the silver lining looks like a dusty grey to an outsider looking in.
I truly believe that without Melanie being the fuel to my fire, I may have given up on applying to PT programs. I may have decided to look for another plan if the promise I made to her, that I would dedicate my career to helping children in pain have a better life, wasn’t made. So thank you Melanie, for everything you’ve taught me even if I run out of breath before I speak of all the things I’ve learned from you.