Monday, May 17, 2010

Portraits in Courage

I have met some amazing people as a consequence of having PD. People whose lives have been upturned by a chronic disease, be it Parkinson's or RA or Lyme Disease or MS or other conditions, who have responded with courage, grace and selflessness. Instead of sitting around feeling sorry for themselves, these incredible people look for something positive to do to help others and to better their own lives. These are my inspiration; they keep me going.

You warriors know who you are: Karen, Pokie, Judy, Sherry, Bob, Dan, Sass, Auntie J., Enzo, Cherie, Nicole, Dixie and a whole bunch more. I admire your attitudes so much, and I try in my own feeble way to follow your lead.

This weekend I saw yet another example of this kind of courage. My friend Karen ("Btrflynana"; see her blog on my blog list on the right) is battling chronic Lyme disease. She was first diagnosed with Parkinson's, which is how I met her. Then, the diagnosis was changed to MSA (multiple system atrophy), but she didn't think her symptoms matched either of those diseases, so she started researching on her own and came up with Lyme's Disease. The symptoms match, and, contrary to popular belief, the bacteria is present on the West coast, just not as abundantly as in the East. This idea was met with skepticism, dismissal, and even with ridicule by her doctors. Apparently, a lot of doctors don't even believe that chronic Lyme disease even exists! Meanwhile, Karen's symptoms had progressed to the point where she had to quit her job and was in danger of losing her house (her husband was already disabled from a fall on the job years ago). She was in constant pain and had difficulty doing even everyday tasks. She did more research and found a "Lyme literate" doctor on her own, who gave her the appropriate tests. She tested positive and started on an antibiotic treatment. Today, she is making progress, though she's still suffering with pain, movement problems, speech issues, and a whole constellation of other symptoms. She is working very hard to raise awareness of chronic Lyme disease, knowing that there are others out there who should be tested as soon as possible. She bugged and badgered a local movie theater until they agreed to show the documentary movie "Under Our Skin" for a couple of special screenings. I went to the screening yesterday. The movie was powerful, compelling, sad and hopeful all at the same time. It really helped explain the Lyme controversy, the Lyme disease epidemic and what kind of things Lyme can do to a person. Karen and her husband Al had run around town putting up flyers the day before, because her ad got bumped off the local paper at the last minute. Nevertheless, there were quite a few people there, and we all received an education about Lyme disease, which was the point of the whole thing. Brava, Karen!

It also happened to be Karen's birthday, so after the movie, we all went to her house for a barbecue. Whew! There is no way I would take that on after a couple of days like that! But that's Karen. She responds to adversity with determination; I respond by taking a nap and hoping it all goes away.

2 comments:

Dan said...

Hi Marian, Thanks for conveying this inspiring story about Karen. I am so proud of her and the fight she puts forth. More than anything she is full of goodness and grace for others! You are wonderful to taking time to write about her and for thanking the troops. I enjoyed your article today.

btrflynana... said...

Marian
I am so humbled by all the sweet things you have said. Thank you very much. I could not have made it this far without my faith in our Lord Jesus and the wonderful people he has put on this journey of life with me. You my sweet friend have always been a pillar of strength and encouragement for me...I am grateful for you friendship and love. I pray together in our lifetime we will see a cure of both our diseases....I wait anxiously for acceptance of mine in the medical community and government!

Hugs always btrflynana/Karen

There was an error in this gadget

About Me

My photo
I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.