Hello, all! B.B. Walter has returned from the land of the dead. I wanted to leave a brief message to everyone letting them know that I am all right. A few of you know the reason for my absentism for the last several months, and I appreciate the outpouring of emotional support I've received from each one of you! For those of you who are unaware of what transpired; my cousin (she and I were closer to sisters than cousins) slipped into a coma in July from a rare disease - Pompe's Disease. After several weeks of struggle, Amber Nicole (Burgess)(Bennett) Cowan passed away in the middle of August. Since then I have been hiding from/wallowing in my grief from her passing.
Having come out of the darkness (although still have moments of utter blackness) I have decided that the best service I can do my cousin's memory is to live. I am also planning a series of articles about my cousin Am and her disease, Pompe's.
This disease effects only 1 in 40,000 people. Briefly, the human body produces lactic acid during movement (that is the bodily fluid that makes your muscles feel weak/fatigued/stiff after exercise) and, separately, another enzyme to break down the lactic acid. Pompe's disease is the non-production or minimal production of this second enzyme called (I believe) glucosamine (I will be double-checking all of this information prior to my articles). Essentially, the lack of this enzyme causes the stiffing of muscles. Since the heart, lungs, and brain are the hardest working (and constantly working) muscles in the human body, these three organs are amongst the first attacked and affected (although a patient may feel pain/fatigue in other seemingly less-deadly muscles as premature symptoms of the disease).
My cousin Amber's disease first manifested as common fatigue; it progressed to pain in her hip and left leg causing difficulty with mobility; and, finally, attacked her lungs, causing her to slip in and out of consciousness, before affecting her brain causing debilitating seizures.
Writing about all of this is going to be both cathartic and devastating for me, I know, as well as for my family. But, true to writer form, unless I'm tweaking an emotional response, I'm not interested in writing something. Also, after seeing the network of people whose lives are affected by this virtually unknown disease, I feel it is important to enlighten those I know (even if they are few) about the illness and its devastation. So look for a series of articles from me on my blog here and also on AllVoices (an online news community written by the everyday people who witness the most extraordinary things).
This is my first step out of the darkness Amber's death has left behind. I miss the light she radiated, and I am determined to find my way back to it again.
Until my next blog article, I hope all my friends, fans, and occassional readers are well and happy. And I look forward to writing at you again soon!
B.B. Walter
Subscribe to:
Post Comments (Atom)
2 comments:
Glad you're back sweetie; yes, this is a healing time for you. Hope everything is going well. Hugs, thoughts, and prayers:)
Good luck with all your endeavors. I understand what you're going through. I lost my niece (like a sister) in May at the age of 40. Its never easy. She was one of my biggest supporters. Hang in there, you're doing the right thing by writing about it.
Post a Comment