There's nothing random. Even my choice of gift recipients is nothing short of kismet.
I don’t believe in flukes and randomness. I deny that this beautiful thing we call life is some arbitrary accident that picks our name from a cosmic hat. I prefer to put my belief in kismet. Fate. Destiny. The Plan. Stay with me. I promise this is leading up to something.
I choose to put my faith in purpose and meaning and I look for it in everything I do. Everything that “happens to me”. I think the lottery corporation should offer a once a year prize for the best video, letter, oral presentation on this exact topic. Wouldn’t it be interesting to see who won the 60 million? Ok, I’m digressing here.
I am a gift- away addict. I enjoy giving gifts and treasures to my friends. It warms my heart and fills me up in ways I can’t describe. I love that I can give my dresses away and make women feel such gratitude and joy. I wish I could give one away every week, and perhaps I will some day. So it comes down to HOW to choose. How to choose the method of finding the recipients. So, I go back to my belief in randomness. I can’t bear to leave it to chance or some random name generator app in my phone. I need to choose. I need to read each entry, each word and look at each person’s smiling face. I want to know their story.
Jessica Miles is a Nurse and Photographer. She’s spent her career helping, educating and nurturing others. She spent many years as an OB RN and went on to hold the position of perinatal and infant loss bereavement coordinator at her hospital. I can’t imagine the level of empathy and compassion a person would have to have inside of themselves to fulfill such a role. Jessica Miles is one hell of a woman. She’s a bright shining light in this world.
Jessica Miles has EDS. This stands for Ehlers Danlos Syndrome and it is a rare, genetic connective tissue disorder for which there is no cure. There is a 50% chance of passing this on to one’s child and Jessica’s young son also shares this diagnosis. Jessica is a twin. Her sister also has EDS but still does not know if her children will be affected. The weight of that is something I do not think many of us could stand. The strength that it would take to share a diagnosis such as EDS with not only your very best friend and sister but also your child is utterly enormous. It would take phenomenal strength of heart and character to solder on with a smile.
Jessica’s symptoms have now migrated to her heart as her vessels continue to weaken and she struggles daily with near black outs as well as painful bowel issues. There are days when she can barely walk to the bathroom. She tells me she now owns a shower chair and wheelchair but refuses to use them. Her physicians want to give her pelvic floor reconstruction but she has opted for a less risky colostomy November 1st. Organ prolapse is a huge risk for patients with EDS. In the past 16 months she has endured seven surgical procedures. Jessica is a mere 41 years old.
Five years ago Jess’s husband brought her home her first camera. She used it to document the birth of her niece and started taking images of colleagues at work. It was through photography that Jessica began a special healing process by documenting her surgeries with self portraiture. The pain Jessica endures daily as her joints disintegrate and her muscles tear constantly is intolerable, but she continues on. She struggles with constant fevers, digestion problems and weight loss. I know this because I’ve asked. Jess isn’t one to complain and if you look at her social media accounts what you will see are photos of light and love and joy. You will see a woman who, though in indescribable pain much of the time and very weak from a syndrome that has claimed a good part of her life - still smiles such a bright and contagious smile it makes you yearn to climb into the photo with her. She documents her pain as beauty in her amazing self portraits. She documents the love and friendship she shares with her twin sister in lovely and soulful and beautiful ways. Even though they both struggle so very much with this illness, they smile. They dance. They love.
I chose to give Jessica and her sister Jen my dresses because I believe they can teach us all something about joy.
They can teach us that joy is not something that shows up for us only when all is well. It isn’t a fair-weather friend who leaves when life gets hard. Joy is within us always. Waiting to be released into the world where it can shine and bathe us with light. Jessica and Jen can teach us all that pain can be synonymous with Joy and Love and Beauty. We can all go on despite pain. We can find a way to hold it in our hearts and to just let it exist without becoming a vicious Monster that destroys our ability to experience the beauty this world has to offer. I believe that I was meant to share this story that belongs to Jessica Miles. There is no randomness in it. If Jessica’s story can touch just one person who is experiencing pain and struggle in their life and give them solace and hope, than my intention and purpose is realized. We are more than our pain, our problems and our bodies. We all have the ability to rise above heartache and grief and to fulfill our life’s purpose despite a failing or sick body.
I’m guilty of complaining and brooding about the little and the big shitty things in life that “happen to me”. Telling Jessica’s story has reminded me that life is not about experiencing happiness only when circumstances are perfect. Learning about extraordinary women as strong and brave as Jen and Jessica and hearing how they live with such pain but still move forward so courageously like ferocious lionesses is awe inspiring and leaves me with a lump in my throat and emotion rolling through my belly. I will try harder to reflect that bravery in my own life.
I hope that in reading about Jessica and Jen you can experience this as well.
Jessica and Jen, you both inspire me to do better and to be better.