The Powerful Lesson I Learned During the Hardest Year in My Health Journey
Life is really hard for me, given my health struggles since I was born. One would think that I have “gone hard” from all the smacks to my ego that my latest struggle has brought.
After I had just graduated, one of my newer friends and I were out in the small town where I grew up, soaking in the quiet of 3 a.m. as we munched on sandwiches and sipped from juice boxes. It was one of those fond memories you look back on and just enjoy.
As we prepared to say goodbye until next week, he asked me about my surgeries.
Everyone knew the latest medical news in my life. My parents worked in the schools and would pass on everything that was happening in my life. Adults I didn’t know would come up to me and ask how my legs were feeling and if I was healed from my waist-down reconstruction surgery.
Knowing that a vast amount of people were so invested in my life started off awkward, but as my pain increased, I tried to find comradery with them as I passed on my latest lessons in life — things that never could be taught, except by the adept hand of experience.
That first day of my sophomore year — when I arrived to class in my wheelchair after spending the year before walking — caused more suspense than I was used to. People didn’t seem to know how to react, and with a laugh, I would always answer their questions. I came to find that people were so much kinder to a little girl in a big wheelchair. I needed their kindness more than they realized. Strangers happily took time from their day to wheel me to my next class, joking about the summer I was so obviously scarred from.
I took pride in my scars — and still do — because I happily but painfully earned each one.
“Do you cry a lot?” my friend asked me. I make it a point to never lie, so I replied “yes” with a lump in my throat.
He said, “I think it would be healing to be able to sob for a long period of time and cry out all my sorrows and pain.”
Oh, if only he knew, I thought. I replied, “Trust me, you’d never wish for that.” I thought back to all the nights I spent sobbing in pain. Yes, healing came after — but only after an event that terrified me and would leave a big scar.
During my year of surgeries, one teacher in particular I thought would be the hardest one to handle. Surprisingly, though, she was the kindest and even sent me “get well” cards when the surgery on my right leg didn’t go even slightly as well as the one on my left.
“This year, you learned something I couldn’t teach — your surgeries taught you to relax,” her card read.
I was offended at first because I worked so very hard to finish and turn in all the work my teachers gave me to make up. Some even gave me more than my friends actually had to do. I was so angry, and I was struggling to handle so much pain and a whole new view of life. I was trying to keep my head above water with pain medications that muddled my brilliant brain. Yet without them, the pain from my legs being broken in eight places and twisted to be straight was more than anyone should have to get a grip on — let alone a barely-15-year-old.
By the end of that year, though, I realized what my teacher meant.
Life may twist and turn in ways we may never expect, and so we may need to learn to find some semblance of peace in between happiness and struggle.
I may have worked harder than ever before — not just wheeling my wheelchair all over a large school but also academically. “A” grades were easy to get, but I never had so many papers to juggle as when I could barely remember the day before.
Looking back, it is totally incredible to me that I succeeded at all — let alone so much that I was fourth in the class.
Alas, because of all that stress, I also had to learn to enjoy the good more. Knowing the homework to come, I actually got to appreciate the weekends. Before, they were just another day in a bland week.
That year, I was stretched more than ever before in every way possible. I met a lot of new people, learned to handle an incredible amount of pain, went to physical therapy, and used new gadgets I previously thought elderly people would usually use.
I lived two lives — two very different lives.
There was the life my family saw — where I would cry into my pillow every morning and night as ice covered my swollen, scarred legs. There was also the life my friends and peers saw — the life of a smiling girl with curly blonde hair, a girl who wheeled her wheelchair with an expert spin and searched for as many reasons to laugh as she could.
Even almost 10 years later, I look back and think upon the lessons I learned.
The biggest lesson quietly whispers, “In your pursuit of happiness, don’t forget to smell the roses.”
Getty image by mammuth.
I have dealt with pain for 16 years already, passing the half-my-life-with-pain mark now being 28. It started with me being born with twisted leg bones followed by discovering this at the age of 13 after pain in my knees from my twisted bones grinding on them. 2 years later I had waist down reconstruction surgery. The left surgery went well. The right surgery did NOT. Epidural didn’t work (later finding out it was because of my Ehlers Danlos Syndrome) and my nerves were rewired from the extreme pain via my bones being broken and twisted to straighten them. I was diagnosed with Amplified Musculoskeletal Pain Syndrome (AMPS) which was full body-extremely rare. I learned to ignore the pain so I could try and live a normal life, but it got so bad my hands no longer would work from the excruciating pain. I barely made it to graduation, failing my last quarter of school. Luckily my ranking was 4th so I still graduated with extreme pain and with help from others who had to write for me. Pretty quickly I was bed-bound and dreaming of hospitalization so I could have strong medication to ease my molecular deep ache. Flash forward to 3 years later when I was miraculously healed over-night. I thought I was free and worked on gaining back all my muscles that were atrophied. But then my pain came back and began rising ever higher. I joined this site for freedom to express my struggle held deep inside for so long with a smile on my face and not even my family knowing what I went through. I never realized how glorious it was to be open and now I refuse to go back. My sense of peace demands to no longer have a fake smile on my face. I am now diagnosed with EDS, AMPS, Fibromyalgia, Hypothyroidism, Severe Insomnia, Asthma, Chronic Fatigue, and recently diagnosed with Lupus as well with a promise that I will soon cross the line and be diagnosed with Juvenile Arthritis. It is SO freeing to know that the reason for all of my pain is because of my many overlapping diagnoses. I am currently working on filing for disability and have lost my dream of Interior Design to keep me warm. Also dealing with blisters covering my scalp and making it ridiculously tender with serious GERD and acid reflux problems due to the EDS. Constantly focusing on not throwing up each second is my new normal. Swallowing 10 times per first swallow is becoming habit. Psoriasis and Eczema now are hitting me harder than ever. My pain jumps higher and higher and no doctor has had the gumption to stick with me and my severely deteriorating health. I walk like a 96yr old woman and hurt so much worse. Technically Miserable but still I will fight on, savoring each moment and smiling at each thing that lifts my burden a little. Life should be cherished, no matter how pain-filled. And with The Mighty at my ruined and failing finger-tips, I will carefully walk into the world with my shoulders back, face to the sun, and hope in my heart with a wish to lift a few fellow down-trodden. We got this!!!!
tierradrollinger23