what it's all about

things at work - muscular dystrophy association - can be very work-ish. about numbers, fundraising, hitting goals, coworker and boss drama, you name it, thats how its been. my interaction with clients has been at best minimal since i got here, and quite frankly (and i understand why) some of them haven't been too interested in getting to know me. there has been just so much turnover in our office, so many new faces rolled in and rolled out over the years, that after a while i'm sure clients are sick of the revolving door. after all they think i wont be here long, either, which sadly, is probably true... not because i dont want to be, but because life has other plans for me.

but in the middle of a hard day of calling for donations and getting hung up on, yelled at, treated as if i am asking the WORLD of every person i approach for a donation, i would sometimes just like to KNOW a client. to say, i'm doing this for so-and-so. and this dollar matters because it just might be the extra dollar that finds so-and-so's wheelchair, or helps pay for that grant that finds help and hope for our clients ... maybe even a cure.

i always always have seen myself as very simple. we have a new boss who has kindly waltzed in the door and is ready to conduct a full body cavity search of our office, establishing a hierarchy bordering on micromanagement that i simply dont agree with. i get that she's, and i quote, "not here to make friends," but at the same time i cant help but laugh when people say stuff like that. YES you are. WHO isn't. WHO walks into any situation and says they're not there to make friends. human nature. its so simple. we want a friendly working environment, a happy place, a place to feel good about ourselves. its so simple. i hate when people pretend their managerial style is the key to success. actually, no. its simpler than that. fostering a healthy working environment is key. but anyway, this is a complete tangent from where i want to go.

all this to say, is, that is NOT what its all about. all these bureaucratic issues have honestly overtaken my thoughts at work and sadly... outside of it. worrying about hitting numbers, etcetera. etcetera. etcetera.

recently however, in the past week, but really in the past hour, i have finally seen what-it's-all-about. though i might not know many of our clients personally, here is what happened.

i speak spanish alright, but its still embarrassing for all the schooling i've had, i should be much more fluent. but naturally, when a spanish-speaking caller calls in, i take the call because at the very least, I can understand THEM. a caller called last week, her name Maura, and she didnt speak a word of english. on top of it, she was frantic. "El doctor me dice que mi hija tiene una problema con sus musculos." hysterical. it was a heartbreaking sentence for anyone to hear, and her tone of voice just did it. "The doctor told me that my daughter has a problem with her muscles."

What's so heartbreaking about that is it could mean the end of her daughter walking, depending on the exact diagnosis. Even the end of her daughter's life. With no cures and nothing really to slow disease progression, it very well could be one of those two. Regardless, this woman's life was about to turn upside down.

Then an even more hysterical line, even more heartbreaking. "No tenemos seguro." We don't have medical insurance. I'll spare you the spanish, but next she told me that the doctor gave her our number at MDA. Said we could help her daughter, Diana, somehow.

This was the part I was waiting for. I listened to her torn up and sat their smiling because I was so excited that I got to be the one to say the next thing. So often I am the one who begs people to raise money for us, begs people to please donate, pleads with people who make me feel like crap for asking anything of them. I got to say something different this time. To put it simply, in most conversations I can sometimes feel ... powerless. And in this one I felt so powerful. I could feel myself metaphorically taking from all those people who'd given me a hard time, and handing it right back to the needy with my next line.

I said (in spanish) Maura, don't you worry. We are going to help you pay for a wheelchair for your daughter, leg braces, or whatever it is she needs. You don't have insurance, that's fine. We are going to cover your fees at our weekly muscle disease clinic at Children's, where Diana can see anyone she needs and obtain a clear diagnosis, physical therapy, occupational therapy, you name it. If you need to borrow a wheelchair or leg braces, we have a loan closet, we will loan you one. We have a Spanish speaking support group, you can attend that with Diana. It is free to become one of our clients. We can send your daughter to summer camp where she can meet all sorts of local San Diego kids in her shoes, also free. We will take care of you and Diana. Don't worry.

I could tell Maura didn't really believe me. Probably if I'd been through everything Maura had -- not just with her daughter's diagnosis but the bigger picture, living in a country where you don't know the language, not having insurance. If I'd been through all that, I wouldn't believe me either. So we sent Maura the client registration card and Diana became a client.

This morning, Diana and her mother Maura and their family went to clinic for the first time. And fittingly, right now as I type in my office, our Spanish support group is going on and all of our local Spanish-speaking clients with muscular dystrophy are convening as a unit, to console eachother and offer resources. Diana and Maura and their family are in there.

I got to meet Maura and Diana finally tonight and it was a wonderful meeting, I was excited to put a face to a voice on the phone. I brought Diana's younger sister some candy and made everyone coffee for support group and Maura pulled me aside and in Spanish said, "Suzy, here is the thing, you are beautiful. But, you are an incredible person. I don't understand where you came from, how you are possible, but you are an incredible person. You have changed our lives forever. Thank you." With tears in her eyes.

It's not me however. It's the millions of firefighters that go out in 95 degree heat and fill their boots with dollar bills for MDA. And the checkers at Vons who ask each customer to donate just $1, sometimes getting 10 to 20 "NO's" in a row, even in the most affluent communities. It's those people that are the incredible, beautiful beings Maura was talking about. I like to think, those are the faces of America. Maura, Diana, and those people on the other end, raising $1 at a time for our cause. I just get to sit here in the middle of it, and I say that it is a priviledge and I mean that it is a priviledge. I just landed here in the middle to see the best of people, helping people, get through the hardest and most impossible of diagnoses. And THAT is what it's all about.