From the very first days of our lives, we have been taught to appreciate the value of the communities that will aid in building our character as we grow and develop. These associations build our morals and perspectives, the things we pride ourselves on and the people we become. Paradoxically we are not always able to choose the communities we belong to, sometime the communities choose us.
Years ago I became a member of a coalition I had no intentions to affiliate with let alone belong to. As an early teen, I was diagnosed with a number of complex rare conditions that unwillingly made me a member of the chronically ill community.
For a very long time I was discouraged and struggling to face the mind numbing solidarity that accompanied chronic illness. I felt so alone, but one day I found a group of peers from all places and walks of life facing similar if not the same conditions and that’s when I finally felt welcomed into the chronically ill community as opposed to feeling forced to be there.
I quickly learned of the diversity within our little corner of the world. For some members they may have been facing this for a matter of months, others a few years, but for some this had been an entire lifetime. My initial impressions of the community changed quickly as I learned that regardless of the matter of time that has passed, the conditions we suffered from, the outlook we had, the treatment we endured, the pain we felt, the doctors we saw, the celebrations that occurred when things were moving in the right way and the support that we were surrounded by when things get tough. Collectively, we were making sense of a nasty and unfair fate that we did not ask for. We all became intertwined with this delicate, beautiful ribbon that bound our hearts and souls and created an understanding that is simply unsearchable. An understanding that can only be achieved when you have lived and experienced our reality. An understanding that came with comfort and warmth. The irony in it all is that we were all connected by something we wish we never experienced, our illnesses…but despite all the suffering that our illnesses brought it brought us even closer. So long as we were tightly bound by that ribbon, there was nothing that could keep us down.
Despite how strong we were as a group, how invincible we were when facing adversity together, there was something that we struggled to face. Our strength and positivity did not leave us oblivious to the darkness that was at each of our door steps. We know our illnesses make us more vulnerable, we know that we may not be given as many days as the next guy, we know that our odds and risks increase with each passing day but that knowledge does not prepare us for when one of our own leaves.
While it leaves us aching to our very core to know that someone we loved is no longer with us, we breathe a sigh of relief as we know the suffering that they endured is over. When someone in our family passes, the ribbon that connected us becomes unbound. We lose our stability, we struggle to understand and not only do we ache missing our friend we fear for our own reality…the reality that this could have been any of us. There aren’t many words to describe what it feels like to lose someone you love, and very few to say what it means to lose someone who understood your deepest struggles. A soul gone too soon, a soul that endured far too much struggle and pain, a soul whose beauty cannot be put to words, a soul that had been loved and loved deeply.
It’s hard for some to understand how we can miss someone we may have never had the privilege of hugging in person, but in the chronic illness community the distance that is so physically great between us becomes so insignificant. Their presence in our lives is an integral part of our days, the conversations and laughter we share over concepts many wont understand or the comfort that is generated through pain that others are oblivious to is the glue that keeps us together.
The ribbon does not become intertwined again easily, the silence from the absence of our friend is ever so loud and instead of their physical presence completing our group it becomes their memory that binds us together. It’s a friendship that is misunderstood, but a gift to understand and I’m not sure there’s another way to put it.
At the end of many days I felt myself exhausted and often more discouraged than when I first started my day in trying to come to terms with what I endure..but those girls, my sisters, help me make sense of it all. Each time a member of our family passes away a piece of our hearts goes with them too, but the beauty in all of this heartbreak is that to mend our broken hearts we use the memory of those we lost, those too incredible for this world.
To our sisters that have passed – you have made our lives richer, you have taught our souls to find deeper meaning in our days, encouraged our hearts to love deeper and reminded to live our days richer. So long as we live our days, we know we are no longer fighting for ourselves but for our angels that surround us. The ribbon that binds us together may have originated out of illness, may be tested by fate, but will never be broken by death. Our ribbon will always remind us of those who have stood by us, those we have loved, and those we have lost and the love that brought us together.