Discussion in 'Fibromyalgia Main Forum' started by Marta608, Sep 9, 2006.

  1. Marta608

    Marta608 Member

    This morning I listened to a segment on NPR written by a man about his father, Bob Hardman, an Episcopal priest who has Parkinson's.

    As I heard Mr. Hardman talking about his disease, I realized it could have been any one of us talking about CFS/FM. This good man and his long-suffering wife who also discusses her struggles living with a loved one's illness, are dealing day by day in a most courageous way. He talks about how he had to learn to make a joke about his trembling so people wouldn't be alarmed, how his sons keep him centered by teasing him that he can throw away his electric toothbrush - and how he will not believe that he's his illness.

    Mr. Hardman has written to every possible person or entity about stem-cell research, wondering why, if it's accepted for barren women to partake of unwanted cells, why is OK to discriminate against another segment of society, those with diseases who would be helped by such research? He gets frustrated and has times of despairing that a cure will be found in his lifetime, a lifetime that could be very long and even harder yet. He has horrid nightmares that have forced his wife to sleep in another bed or room to be able to get some rest herself. She feels guilty and so does he.

    His story made me think. I know weakness but I don't know a lot about uncontrollable trembing. I know about not sleeping but I don't know about the severe nightmares brought on by Parkinson's. I do know how valuable humor is and I do know about not believing I'm my illness.

    Listening to this man and his family I thought about suffering in general. I thought about how I would like my suffering to be recognized and understood as if somehow that would make it easier. And maybe it would! It's hard not to be believed but would I rather tremble uncontrollably? because then people would certainly know I have an illness.

    In the midst of my frustration, I think it's important to pause and remind myself that there are many others suffering too, maybe not exactly as I am but suffering nonetheless. Do I understand their suffering? I doubt it. Does that make me a bad or insensitive person? I don't think so.

    In light of the fact that so many are living with so much, how can I not bear my infirmities with dignity? When others don't understand, as painful and depressing as that is, can I really blame them, and even if I could blame them, what purpose would it serve? Wouldn't my energy be better spent on finding that place of grace that will allow me to make the very best of each day?

    I encourage you to go to npr.com and read Bob Hartman's story today. It helped me gain some perspective. Maybe it will help you too.

  2. barbinindiana

    barbinindiana New Member

    Thank you Marta for you wonderful post. You're so right about everything you said.

  3. Mini4Me

    Mini4Me New Member

    Great perspective, well written, Marta!
    Thanks for sharing.
    Lots to think about here...
  4. Marta608

    Marta608 Member

    Thank you, Barb and Mini, for your kind words.

  5. LittleBluestem

    LittleBluestem New Member

    Worthwhile reading.
  6. Marta608

    Marta608 Member

    Yes, we surely do get frustrated and with very good cause. As you said, Wendy, it would be a relief to have our illness respected. I think, even though it's unwarrented, I feel a bit guilty when I'm not believed, as if people might think I'm exaggerating to get attention. Most of us are people-pleasers; we don't want anyone to think poorly of us.

    Not long ago someone posted a thread about what we've learned (I think it was) through our illness. Maybe that's one of the lessons for us, that we don't have to have as much approval as we think we do.

    Another lesson, I believe, is that while we can and often do have great empathy for others who suffer, it's not possible for any one of us to totally comprehend another's life. Even those of us with CFS cannot understand exactly what someone else with CFS bears. Our backgrounds are different, our tolerance for pain and suffering are different, our lives overall have been and are not the same. We also have varying numbers of people who support us emotionally and/or financially, from none to many and differing degrees of need for that support and understanding.

    This is just another perspective on what we all occasionally seem to spend a lot of energy railing against.... understanding. I don't know how to get people to understand this illness but maybe I can change my requirement for understanding.


  7. Mikie

    Mikie Moderator

    I pray for all who suffer from chronic illnesses, not just ours. Chronic illness causes physical and mental suffering but it affects us emotionally and spiritually as well. If we can grow in spirit, it is something good which comes from something we never wanted. Chronic illness affects us economically and in our relationships too.

    I dated a man with Parkinson's and he went to a support group called, "Movers and Shakers." It does help to have a sense of humor.

    I need look no further than downstairs to see that there are others who suffer more than I. The man never complains and is always so sweet. He has Type I Diabetes and has lost both legs following many surgeries to his veins to try to save them. His kidneys have failed and he has to have dialysis. He is almost blind. His sister and her husband live with him to help him. Both of them have had serious health problems as well. They are the nicest people in the world. What an inspiration they are to me.

    Love, Mikie
  8. StephieBee

    StephieBee New Member

    This is exacly the reason that I am not bitter or angry at the world anymore for having the DD's I have.

    It took me years to get over it, but what finally got me through it was knowing that I could have it alot worse. I am so grateful that I do not suffer from something as horrible as this. I am 'lucky' not to have something like Parkinson's and 'just' FM.

  9. Marta608

    Marta608 Member

    Thank you for your comments and the bump.

    I'm just in awe of all of the brave people everywhere.

  10. kholmes

    kholmes New Member

    A fine post, indeed. Beautifully written.

    It's easy to forget about people struggling with other illnesses that plague our western world: Parkinsons, Lupus, MS, diabetes, AIDS, Cancer, heart disease.

    But we also forget about the illnesses and plight of people around the world, suffering with malaria, leprosy, and so many illnesses that eradicated in the west.

    There's nothing more amazing than the human spirit and God's love.

  11. Marta608

    Marta608 Member

    Very well said, Ken.


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