A P.I. Patient Memorial

How I want to be remembered...

When at lunch with colleagues one afternoon, we were discussing the various memorials around the city, remember I work in D.C., so there is an important person statue on almost every corner. There was a lengthy discussion of which we liked best and why. I am partial to the more natural style memorials myself like the FDR Memorial featured here

I love the flow and peace of such memorials, as well as the opportunity for reflection. I love the solitude of the togetherness in these places, as we all remember. It feeds my soul. 

The other favorite places I have are the functional memorials. I love the Kennedy Center for the beauty it holds - both inside and out. I find it to be a place of unbridled joy for me and, anytime I go, and I feel the specialness of the site.

But my answer to my colleague's question hit on something deeper for me. I can imagine what a memorial I would design for myself would be. It would be an integrated medical program for adult patients with primary immunodeficiency. We would have contemplative space amid the medical maze to promote holistic well-being. We would train doctors and research the causes of immunodeficiency and its complications. We would embrace the fullness of a patient's journey, so palliative care and hospice are integrated into the spectrum of patient care.

I’ve reached the age where I know the difference between a dream and a goal. It's a lovely idea and one that's not something I think I will ever achieve. I don’t think I’ll ever be in possession of the funding it would take to do something like this, especially in the current healthcare and economic reality of the US system. It would be an incredible challenge financially and emotionally, one that I realize is likely out of reach in this life. I am, however, hopeful that we can share pieces of that dream through our work at Immune Competence. 

Colin and I have discussed at length our individual goals for this project, and they come down to one thing: we want to make lives better for people living with PI. It comes down to engagement and amplification of issues we see in the community. That single driving factor has brought us together - despite our very different journeys - and unites us with you. You are reading this because of your connection to one or both of us or primary immunodeficiency diseases. 

You are part of this dream, too. We want to engage you and make you laugh and have you cry with us. We’re building a community here - one that revolves around you - and if that’s all I leave behind, I will have done an amazing thing. 

What’s your vision of a Primary Immunodeficiency Memorial that could engage future generations? Let us know in the comments below.