Remembering Susan Beard -- and Praying Her Words Will Not Fall on Deaf Ears or Blind Eyes

This morning I arrived at the South Main campus a full hour before the 8:30 a.m. worship began.  It was a planned arrival.  I even went to bed at 8:00 p.m. yesterday to make sure I would have adequate rest, wake up and leave timely for the occasion.  The event was for the attendance of one -- me.  My early arrival afforded me time to park strategically just outside the entrance to the Chaffin building in which my Sunday School classroom is located.  And it afforded me time in a room that was designed for worship and reflection on the awesome and mighty God whom we serve.  In that room is a grand piano -- beautiful to behold and even more wonderful to play.And play I did -- starting and ending with one of my favorites -- "Great is Thy Faithfulness."  As the music filled the room, I let go of the frustration and thoughts of futility at living in a body racked with pain, the waves of which rival any storm's and that rarely takes a break, wishing for oxygen and dreading the need therefor, and wondering if I will ever be free to just be me.  And, in the midst of my pity party, remembering that millions would love to walk in my shoes, sleep in my bed, and worship in [this] room -- and cannot.  So, there came a verse or two of "It is Well With My Soul."

Then there was worship, Sunday School, and lunch with some of my class.  Again, arriving at Chuy's on Westheimer, I parked strategically near the door to avoid time in the sun.  After lunch, I hurried to my Jeep, turned on the A/C and turned the "fan" knob has high as it would go for the drive home.

In a season where many are vacationing and having fun in the sun, I take refuge in my home where the air conditioning makes it possible to function, to just breathe.  Fortunately, I have no desire to work on my already glorious tan, which is a good thing, because having Sarcoidosis with pulmonary involvement dictates a life of solar avoidance -- especially when the heat index is 105.

Just moments ago, I received a note via email from the Sarcoidosis Awareness group, and share it now with any who will read it, as it clearly captures the plight of folks who live with an orphan disease that gets comparatively little attention in terms of research and funding. Susan is gone but her words are those of many who live as she did.

Subject: Oh how I hate this disease

Oh how I hate this disease. It has taken too many things away from me. My ability to work. My ability to care for myself. My ability to be independent. My feeling of self worth. My feeling of who I am. My life. I have had to try and recreate all those things. At some I have been successful but at most I have failed. I try hard, but my enemy is too strong. The battle I am loosing. Sarcoidosis has won. I am still wanting to fight, but I know it will take my life soon.

My goal now is to make a difference in some small way. To help others with the disease to learn as much as they can about this monster. To help researchers to unlock the door to the mysteries that are Sarcoidosis. To feel useful in some small way. To stay alive long enough to attend one last Walk for a Cure.

How do I inspire others to help take arms against this disease? To take part in research to help unlock the mysteries? To get involved and be proactive? How do I make others understand that it is US the patients, the ones with the disease that must take up this cause. Without US the answers will never be found. Because it is within US, within OUR bodies that the key to the door lies. As much as those who do not have the disease want to help, they can not do it without US.

This is my greatest failure. I can not find the words to motivate. I can not reach enough people , to make them understand what a battle this is. What is at stake. I do not have the means to do it myself. For if I could I would without a second thought. I am too weak anymore, my body failing too much. My grief so strong.

If I could just organize the different sarcoidosis groups. Encourage them to work together in a united cause. Find the one thing that we can all work together for on a national goal. Make them understand that a house divided can never stand. We must give up trying for selfish "glory" but find how to work as a team. Where are the words I can use? How do I make others see the need?

Alas, all my dreams and efforts are in vain. For I am but one person. A voice alone. As loud as I can shout about sarcoidosis, my single voice will go unheard. My life will pass, as so many others with the disease have, with little or no notice. All because I could not find the words. Because I could not be heard. No one would help me.

--Susan Beard