I complain about this MS life on the blog quite a bit. Lately MS seems to take up every millimeter of my head, me heart and my soul but there’s another dimension of this MS life that I can overlook that deserves some attention. This disease has produced miracles plain and simple, miracles in the form of angels that I may have missed out on entirely were I not sick and in need of care. Evie might well be the biggest and best of these miracles. Come along with me, friends, while I attempt to carve out space. This requires attention I’m having trouble mustering after yet another sleepless night.This one is important so here we go.
Evie came into my life on a day I was left alone by another caregiver who didn’t show up. Her friend, my caregiver Jasmine at the time, asked her to pop by my house to maybe make me a PB&J or something and a beautiful friendship was born. Some people are natural caregivers. They have a pureness in them that recognizes another human in dire need of an extra special kind of love and attention. I’ve been lucky enough to stumble across a few of these rarest of all humans. Evie is one of these humans. Every person who is touched by her hand and her heart comes away with the very special gift of her presence. For me a rare stroke of luck that went well beyond a PB&J for Evie then became the cornerstone of my care team. Again, a chance encounter that has changed my life.
Evie’s full name is Iwona, pronunced Evona with a hard E. She is a greencard holder originally from Poland, landing in NYC along with her parents, older brother and younger sister 38 years ago.Evie’s early life in America was rich with experience such as working on a farm when she was just 8 years old, learning how to groom and exercise full-grown horses. Evie speaks of the enormity of being on the back of a horse at significant speed, coming up short and flying straight over the animal’s head landing face first in the dirt. The ability of an eight-year-old taking this kind of responsibility impressed me while the feeling of freedom she described to me made me feel jealous of that tiny eight-year-old Polish girl as I am unlikely to have that experience myself at my age and disability level.
Growing up an immigrant was a challenge, too, leading to some wrong steps and troubles In her teens and young adulthood as most of us have but Evie came away from her trouble wiser and smarter thoroughly independent, prepared for this challenge of this thing called life. Evie and I do a stretching routine nightly where the song list comes from my Spotify playlist called New Chicks Sing – a list I created to spotlight favorite female singer-songwriters. When the song “Are You Strong Enough To Be My Man” by Sheryl Crow comes on I call it Evie’s theme song as it reminds me of her approach to life. Evie puts me into bed each night – this stretching time is our ritual that might be the only time I’m not consumed by pain the entire day. This time is sacred to the both of us. A year into our relationship and we’ve only missed stretching once or twice. An impressive run in this crazy chronic illness life.
Evie has an 18 year old daughter who she raised on her own. Seeing the way she advocates for her daughter – always being her biggest cheerleader, inspires me. It’s a shining example of what real genuine love truly is. Not every person has the capacity to love as fiercely as Evie does those in her realm lucky enough to call her friend. There’s a selfless quality to her approach to relationships but don’t get it twisted – Evie is no pushover. She respects her own values. Her authenticity is true, her relationships long but she stands for her own value as fiercely as she does for those she loves. Self-respect is admirable – something to aspire to. I’ve seen Evie attacked needlessly by a few folks who misunderstood her behavior and demeanor and even when under attack, Evie stands strong in her own value. Protecting her integrity with dignity and grace. Taking criticism and learning from it as opposed to fighting blindly to be “right.”
When times get super hard for me in my ever-increasing levels of disability, Evie always wants to know what she can do. Always looking to help or make things better somehow, feeling frustrated when the inevitable reality hits: there’s nothing anyone can do for me. Radical acceptance is the only path open to me. This radical acceptance is difficult for me but can be even more difficult for those who love me. That basic truth – there’s nothing anyone can do for me now – what a gut punch that is. It’s frustrating to me! I imagine it’s nearly impossible to accomplish for someone who loves me. I’m lucky enough to be loved by many but especially lucky to be loved by Evie.
Of course, it’s not always sunshine and roses. Evie and I spend far too much time in each other’s faces for disagreements not to arise. I struggle with trying to control any aspect of my day-to-day life making me a slave to daily routine, my self-imposed timeline of daily events. Evie struggles with time – specifically being on time for any aspect of my daily routines. This reality means we have a million text messages of me begging Evie to be on time and her responding with the number of exact minutes she’ll be late. This friction is a constant in our dynamic that exists on multiple levels – the caregiver/patient relationship as well as the fundamental friendship level. This fundamental tension on any relationship is tough but Evie and I are working through it together. I know she sees me trying. Patience isn’t my strong suit but I’m learning. Evie is trying too. I see her too. Baby steps. I tell myself. I love my best friend Evie more than I ever thought possible. Like family but better. Family you choose.
Source: bethybrightanddark.com