Sjogren's Syndrome Walkabout 2009

I wasn’t looking forward to it. I avoided the notion of it for an entire year now, tucking the inner voice that was working on prodding me out of my comfort zone into action tightly away. A year ago this month, I was formally diagnosed with Sjogren’s Syndrome, which is the second most common autoimmune disease with a staggering four times as many cases as Lupus, yet so little is known that the majority of both general doctors and specialists are not educated in the simple symptoms enough to screen their patients and point them onto further diagnosis. I’ve lived this year in much thought about how that needs to change practically speaking and also carrying a load of guilt that I am the first person within my entire extended family to have an autoimmune disease; I have regrettably hurdled this genetic marker into our family’s future. The ability to join Sjogren’s Foundation and fund-raise has given me some where to put some of my thoughts into action.

To know me, is to know that I would not spontaneously choose to attend a walkabout with people with my disease. It is not that I do not feel compassion and great empathy for them, but my experiences with them has often led me to compare or catastrophize my own case.

I don’t breathe well in doctor’s rooms.

I don’t breathe well near other sjogren’s patients.

I wake up not breathing well with the thought that I am an autoimmune patient.

Though I am learning that I am truly no different a person than the day before I was diagnosed. Nothing really changed the day after and I’ve just been given a title in a society where it is almost a sin to have an undiagnosed disease, so it is for the best. It is information that I needed along with symptoms justified, and we are all in effect, in this process of dying. Socrates had a phrase for it, how to engage our days with "the practice of dying," asserting there is no way to fully live until we know how to die. I think I’ve walked a while down that road in my own mind a few times and so now most days I am ready to live more.

In the process of this daily dying and reflecting on that, I surprise myself at times and find the deeper, wider life. It’s not the one I had planned, but it is a life. Also, as a Friend, I am reminded to live means to take an action however small, to let go of all the stuff; all the cumber that weighs one down, as well as any lingering bitterness in the backroom of my soul.

So, I walked. I attended the Philadelphia Tri-state Area’s fund raiser along with my family. I had the pleasant surprise of a good friend who insisted she and her family walk along with us for support. I saw other people appearing a lot stronger than myself and many further progressed than me. However, that all faded away walking toward that common goal of continued research for future generations so that this neglected disease will get the attention it deserves and our descendants and others who will pass this way will not suffer so. There was no need for explanations, there was no need for embarrassment of wearing my hydration glasses, for clutching my water bottle, applying eye drops and taking medication. That was pleasant, as was the display of families just like mine, laughing, talking and persisting in living. Life holds many of these surprises around every corner, reminders of living with gratitude and joy on the way to death.

Together, we raised a total of $68,451 this past weekend. I did nothing but show up and give all the credit for my total portion to my family and contributors. I shocked myself in my ability to walk 1.7 miles that I never thought I could, but even more significant, I left with a little more joy and relief as I’ve dropped some of my guilt and sorrow, the responsibility I’ve carried for scarring my family. As I left, I tore the scarlet letter off my chest.

"Therefore we do not loose heart.
Though outwardly we are wasting away,
yet inwardly we are being renewed day by day.
For our light and momentary troubles are
achieving for us an Eternal glory
that outweighs them all.
So we fix our eyes not on what is seen
but what is unseen.
For what is seen is temporary,
what is unseen is Eternal."
2 Cor 4:16-18