Monday, September 10, 2007


As I approached the front door of the home, I paused and composed myself. I guessed that I'd have a hard time getting through the meeting. After all, I had decided I needed to tell them I could no longer serve.

I gulped some air, and entered. I walked in the house behind another woman. The individuals in the living room quieted. A few minutes later, we gathered around a large oak table for the meeting. Several agenda items were to be completed. All that I wanted was for the last item to arrive. I wanted to say what I had to say, and get out of there. With much anticipation, I shifted in my chair and managed to gulp down some food. My nerves were on end, and I'm pretty sure my blood pressure was rising.

Eventually and finally, we arrived at the agenda item I anticipated. I informed the group that I'd be stepping down because of some accusations that had been made in regard to me. None of the accusations were true.

Most of the individuals stated that what I was told and believed was simply not true. I couldn't believe what was unfolding in front of me. Even upon confrontation, the truth would not come out. It was disappointing human behavior. Tears kept welling up inside me, and they eventually flowed.

I left, and amazingly, I felt relieved. I had said what I wanted to say...whether they actually heard and believed me, I'll probably never know.

Some days, it is simply amazing how human behavior has allowed our species to progress as far as we've come.

As you may know, I've been immersed in the Alpha-1 community since Grace was diagnosed in 2002. I've always believed that this was a good thing to do. Considering my need to understand, gather all the facts, and form an educated opinion of how Alpha-1 can affect my family's life, I initially felt like I had found a new "home" where other community members would understand and welcome me. These precious few would understand, and hold me up in tough times.

Much to my dismay, and possibly because I'm quite naive, I've lately experienced a pure opposite to my former naive beliefs.

Why is it that minority groups feel the need to splinter? Why do we need to align ourselves with one augmentation company over another? Why do we "split hairs" over who is liver, lung, or skin affected by Alpha-1? Why is it that I've supposedly not been in the community long enough to supposedly understand? As if, I'm some young pup to be mentored.

It is an amazing bunch of bull if you ask me.

Why is it that matters? Aren't we all members of the Alpha-1 community? I don't give a flying fig what your phenotype is? I don't care how long you've been diagnosed? You are a member of my community and deserve to be among us.

Instead of banding together into a group with strength and unity, we instead splinter and fracture into he-said, she-said. Gossip becomes "truth" without basis in fact, and emotions rule what would be normally calmer heads.

It doesn't matter what is fact or fiction. We believe what we're told without a frame of reference and embrace the "false" truth. It is a sorry state of affairs.

If this keeps up, our community will crumble under the weight of half understood issues and lies. All that I know is that I'm sick of being accused of things I haven't done. I'm sick of individuals who lie directly to my face. I'm sick of the gossiping. I'm sick of the individuals who only see what they want to see. They'd rather see others unhappy and sour to the idea of one united Alpha-1 community.

Volunteering in my community is becoming less fulfilling. I'm disenchanted and hoping that I can keep my daughters far, far away from this ill will. One thing is for sure. I will do everything in my power to raise helpful, kind, considerate, and respectful future members of the Alpha-1 community.

Those who choose to believe that I have less than pure intentions are wrong...plain and simple.

1 comment:

~Denise~ said...

I'm sorry to hear this Jen. I know how much Alpha-1 means to you and to have something like this happen, has to be heartbreaking.