Although I know I have written about this before it’s a topic that deserves revisiting and NEVER forgetting.
Whenever I write my other pieces, I try and paint a picture of what life is like for those of us who have Autoimmune diseases. Why? Because I believe every time I share this information I am helping break down walls and barriers into the lives of those struggling and trying to make a new life.
That said, what I want to write about here is how important a role that our friends and loved ones are in this fight for life. There is no way to describe how important you all are and what you mean to us but I will try.
I could write books about how we feel when someone shows us the slightest bit of compassion and kindness. What it means to us when someone chooses to stand by us and love us despite how hard it must be to watch someone they care about struggle and fight to do the simplest of things. It must be truly heart breaking to watch us in pain and not be able to take our pain away. It must be indescribable to watch a fully grown adult require feeding and bathing like a helpless infant.
I watch my husband go from a man who was a very easy going and peaceful person to someone who has moments of intense anxiety and confusion. I watch him watching me rock back and forth and crying and I am filled with feelings of admiration and guilt.
I remember watching my mother dying of cancer and seeing her pain and I realise that its not easy to watch ANYONE you love hurt. Its hard watching people you don’t even know hurt! And yet every day my husband wakes up, opens the blinds and regardless of how awful yesterday was, he starts the day with a weary smile and tells me how today is going to be a “better day” and for that moment, for that wonderful suspended moment, we are both as optimistic as we can be. This is love. This is complete and utter devotion and commitment.
This is the same wonderful attitude that I have come to love and appreciate from those friends and loved ones who have committed to make the transition with me and follow me as best they can into this new and difficult reality.
You see for those who have ‘stayed the course’ with me I really cant describe my admiration in a way that could do it justice. I am humbled as I try to contemplate how strange and difficult a journey it must be for you too. Not knowing what to say. Not really knowing what to do. Feeling helpless and, yes, lets say it, disappointed by what these weird diseases with crazy names have done to our love and friendships. How it has come along and changed your friend and your loved one that you thought you knew. How it messes with your plans, your invitations, your hopes and your precious moments. Your patience and your loyalty is beyond words.
Why do I say these things? Because there isn’t a day in which I haven’t thought of what it must be like for you all. There isn’t a day I haven’t put myself in your shoes and wondered how I would cope. I know that for many of you it can be excruciating being stuck in traffic on the way to work, so putting up with the frustrations and effects of a disease you know nothing about must be close to mind boggling.
You must have wondered. You must feel torn. You must have had your doubts and wondered if it would be easier to just slowly step back and walk away. I wouldn’t have blamed you; truly. You see the people that we lose to these diseases we harbor no ill will towards or no anger. Autoimmunes see it as another thing that these diseases take from us and we grieve them and miss them but never blame them.
But to those who have found the ability, the tenacity, the love and the spirit to stay, you are truly the most blessed and beautiful things in our lives. Your friendship, love, respect, kindness, honesty, commitment, loyalty, openness, maturity, humor and compassion is worth more than words can say and more than money can buy. You are our reasons for living through such pain and devastation. You are the reasons we don’t ‘check out’ of this world. You are the reasons we fight and tolerate the intolerable. You are why we keep trying to hold on while everything inside us seems to be letting go and shutting down.
I write this to explain to the friend, the neighbor, the loved one, the sister and the husband what a huge part you all play to our survival and our day to day lives. One word from you and our day becomes a little brighter. One smile or hug from you and our year will be a little more bearable. Even when you think you cant do anything to help, you are doing everything we need and all that we ask of you. Just standing by us and believing in us during our darkest hours, that is more than we ever dreamed possible.