Finding Joy When Illness Means Life Doesn't Go the Way You Want
I will tell you a secret.
Life (almost) never goes how you want.
I learned this at the wise old age of 13. Suddenly, I no longer was who I had planned to be. I no longer would be able to run again, I would have to go through high school having waist down reconstruction surgeries, and I would treasure each new step like it was my first.
I have learned so much about how people never treasure things until they are gone. I saw it with my brother when he had to endure a life-altering and a life-taking accident. I saw it when my mom got a kink in her back and didn’t move as easily. And I have felt it in everyone during this epidemic.
I have been almost completely homebound since I was a senior in high school. And that wasn’t because I was healing from my surgeries. I learned long ago how to deal with being stuck at home with little to entertain you after years of friends, parties and shopping. The frustration you feel. The complete lack of control and the tears that you don’t really know what is coming. The difference was that I was forced to stay at home, in bed even. I was forced by my own body to become a hermit. It is so sad knowing the majority of your friends won’t check in on you when you are unable to text back.
The first thing that was taken from me was my hands. As a senior, I had to have my parents come to school with me so that they could write for me on the tests I had to take. The writing on my last finals? My dad wrote them for me.
The heart-wrenching pain when you can’t do a gosh dang thing about what is happening to your crashing world is unexplainable. You don’t get it until you have overcome it. And that is the thing, you don’t just overcome it within a few months, it can keep coming back each time you ponder how different and perhaps even lacking your new life is.
You don’t realize the love you have for things until their dependability suddenly stops.
I had to relearn how to walk at the age of 15. Ever since I am grateful of the steps I take. As I say my nighttime prayers, I always am grateful for walking. My family couldn’t understand when, after months of being in a wheelchair and struggling to walk, I still couldn’t walk, and that was when the panic attacks began. I couldn’t understand it. It was an hour of pure terror and this incredible knowledge that I would never be able to walk again. I sobbed for that long hour when I was on vacation with my family, supposed to be having fun, supposed to be enjoying myself. But I was surrounded by people who didn’t have a clue what my life was like, and they didn’t understand pain like I did. I hated each time they told me to “put on a happy face” as if I was being overly dramatic after having my legs broken in eight places and twisted to be straight. They had no clue.
Looking back, I can give forgiveness easily. People — no matter how empathetic — cannot understand what they have not experienced. People think “I broke a finger once, I understand pain.” Or “I had to stay home for a few months when I was really sick, I understand being home/bedbound.”
But that is only a taste of what life is like. Just a little niggling in the mind that makes you think, “Wow when I was sick I was so miserable, life is so much better when I am healthy.” Those little thoughts that we appreciate what we have because we didn’t have it once.
I’ve learned life is not about all the things we do or accomplish that we can show off to everyone. Life is not about accolades or how much money you have in the bank or your wallet. Life is about what you accomplish in your heart, mind and soul. Some of the happiest people have the least amount of things. They appreciate every little thing that comes because they have not only been without, but they know the worth of things as they are.
For me, raspberries my selfless parents buy for me are treasures I savor and thank God for each time. A simple moment when my dog makes me laugh when no one is looking is a gift from the universe.
Happenings in the world don’t affect me as much as others. Not just because I am still stuck at home in my bed all these eight years later with a fading body that can’t do what I need because of excruciating pain. But because I’ve found that not only does life not even remotely go the way you want (in fact I have found it tends to take you through your greatest fears) but actually, life takes you where you need to go.
If we live life to the fullest, no regrets, nothing can really touch our peace.
I don’t mean living life to the fullest based on your wants. I mean living life to the fullest because the things most worth our time are often the things that serve others. Savoring family, being there for a friend when they need you most, treasuring food on the table and a full fridge. Even savoring each step you are able to take. It is true we never realize what we had until it is gone, but if we treasure all the important things and live searching for the gifts we all are given, regret will be a word we happily will struggle to understand.
Getty image by Valentyn Volkov.
I have dealt with pain for 17-almost 18 years already, passing the half-my-life-with-pain mark now being 29. 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. Severe Plantar Fasciitis kept me avoiding walking at many costs. 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 with many more complications taking over every bit of my body. 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, Hypersomnia, Lymphedema, Chronic Fatigue Syndrome, PTSD, Scoliosis, Sciatica, Bone and Shin Splints and recently promised 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. I walk like a 96yr old woman and hurt so much worse. Only recently did my new rheumatologist pinpoint my last pain diagnoses as being Spine Arthritis, Psoriatic Arthritis, and RA. At long last I have found a home health company that save me pain and energy by coming to my house for appointments. It is ingenious and such a blessing! My new PCP is a brilliant and knowledgeable woman who actually cares for her patients! She wants us to live our best lives and works hard for it to be so. Thanks to her I now also have a pain doctor who CARES and is not afraid to help his patients live their most pain-free lives!!! He is SUCH a gem like her! It almost 18 years to find these blessed doctors. The biggest lesson I have learned is that my happiness is vital and if I have a doctor that isn't measuring up, drop them ASAP! Life is too short to suffer at the hands of others-especially when we are paying them to supposedly help us! It isn't worth it but YOU ARE! Finally in a place in my life where the future looks bright and I am excited for the challenges, as I know my health loves to constantly cause more pain and troubles like my Major Depressive Disorder, Psychosis, and Anxiety. I have been given a VERY complicated and Unique body that I choose to have as I know it better than anyone else. It is mine and we will learn to become a team though it may take a lifetime. I will never give up. No matter what I will fight on! Just as I have these long years, 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!!!!
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