Members of Team SJS just minutes before the start of the 2010 Fox Cities Half Marathon!

Monday, April 4, 2011

The point?

I have been sitting here this morning, drinking my coffee, checking emails and Facebook posts, as I like to do every day trying to get the energy up to get on the treadmill and put a few miles in. The gloomy day has me feeling a little bummed out and wanting to sit all day in my bathrobe curled up on the couch, but in a few hours I have to get to the salon for another day.

As I'm reading everyone's Monday morning posts, most sounding a lot like mine: not wanting to get out of bed, not enough coffee in the world to get moving, tired of the crummy weather, and on and on, I come across yet another one of Jean McCawley's (founder of the Stevens Johnson Syndrome Foundation) desperate requests for prayers needed for another case of SJS. It's the third one in two days!! She asked for prayers for Giovanni, a 3 year old from Sacramento, an 18 month old from Boston and this latest, a woman from Tampa who is in critical condition. My mind races back to the snapshots in my head of my own experience, what I can remember anyway. It shakes me from the core and I am immediately filled with fear for those families and patients, knowing that they have no idea what just hit them!

The anger builds in my chest and the frustration grabs me by my soul! Angry that it is most likely these people were not warned of the possibility of SJS/TENs, that our government does not have a mandate that physicians report cases of SJS so that we have accurate numbers of people affected by it. Frustrated that I know there is a need so huge to get more information out there about this illness, that just because you survive the acute phase doesn't mean that you will not suffer in one way or another for the rest of your life, that I can't do more. At least, not right now.

I have found that I have a strong need and a desire to do something to help, but I don't know what and I don't have the resources to just start Foundation or Non-profit organization. And even if I did, what the hell would I focus on?? There's just so much to battle that it is all incredibly daunting.

So I sit and wonder, what is it that God spared me for? What is it that You want me to accomplish in this life? Did you keep me here for my husband and kids, as my husband truly believes, or is it for them and also for my fellow Survivors? Is it to get the word out about SJS? Is it to urge our government to make some changes? Am I supposed to aid in research by raising money? Or is it to help heal those who have suffered through my words, love and support? I don't know!! I can't hear what You are telling me and I am wasting time! Three more of Your children are suffering today. Dear God, why can't anyone hear those of us screaming from the rooftops?

Will I ever know what it is I am here for? Will anyone ever truly hear me? Dear God, I hope so.

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