, , , , , , , ,

download (3)

While my disease is considered “rare”, I have been able to connect with many who share in my journey thanks to the magic of social media. Every person I meet inspires me. Every person I meet gives me strength. Every person I get to know who faces the daily challenges I face or ones far worse is model of encouragement for me.

The beginners give me a chance to pay it forward, to offer my own words of grace and support. The beginners help me remember how confused and scared and overwhelmed I was when this disease first blew through my life. They help me remember that I proved that I was stronger than I ever thought I could be. Now I try to share that very strength with them so they too know that while it might not get better, it will get different and they will survive and figure out how to live with this devastating disease.

Those who have gone before me give me motivation to keep going. Their collective knowledge has been my guide and they are my mentors. I could not have come as far as I have without them. Their courage gives me courage. Their grit and determination not just to fight but to live is a treasure to me and I am forever grateful for the path they have forged for me.

Then there are the caregivers I have met along the way. The ones who loyally and doggedly stand by their loved ones in this unpredictable battle of ups and downs and in betweens. The caregivers have a special place in my heart. My husband is one of these people. Their commitment, their resolve to advocate and support us when we feel not only physically weak but useless and no longer ourselves is a priceless gift and a selfless act of love and devotion.

I cherish all my sarcoidosis friends. We share a unique and special bond like no other. Explanations are not needed, judgements are never made because the struggle, while invisible to outsiders, is perfectly clear to us. Collectively we lift each other, making us stronger, even when we feel weak and impotent. We learn from each other, giving us new resolve to continue the fight against unavoidable pain and uncertain futures.

This is an open letter to my sarcoid friends, hoping they will read it and know that while we many never meet, you are in my heart. You are a part of me. I continue my struggle, in part because of your inspiration and your strength is my strength.