Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Carol, you never lose the war... You take it, and fight a battle, for us, it's a long one, a whole lifetime worth, But, at least for me (and it seems for you as far as family) thatb you take what you do have and... you use it without guilt. You stay strong even through the struggle. I have this good friend, he's actually a nuero-surgeon, I can't say he remembers me, so many kids and so many people come through his office every day, all year,into a decade, but he once explained to me... He said... "I don't know much about heaven. I don't know whether it's a place we go to or come from, or if it only exsists inside the fleeting moments of joy life grants us from time to time. For me, heaven is being on a boat on the water. Any boat on any water. It's always where I felt happiest and most at peace, ever since I was a boy. It's where I can be alone, without feeling lonely, adrift without feeling lost. Hell is something I'm more knoweledgable about. I've seen it all too often in the eyes of mothers and fathers and sick kids.... When I'm stuck in my own hell, or see patients and families mired in theirs, I remember Winston Churchill's advice "When your going through hell, keep going" There is no clearly marked EXIT sign in hell and there is only one direction leading out... which is forward" I took his words and placed them in my pocket, and forever wear it on my heart... because its simply so true... As far as me being with nature, like you i am part of it as well, we all are, every one of us, because Humanity is nature... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 I can totally relate to how you are feeling. You have put it into words that I couldn't come up with. I too have lost about 50% of my strength and it has been replaced with constant pain. With the NF2 and on top of that..fibromylagia and arthritis, I feel as though I am losing the war. Like you, I love nature, though I do not give up on being a part of it. I look at the sky almost everynight....and sometimes wish I was one of those shining stars......just looking down. My inner spirit also gives up on me at times. I don't always revive it quickly as it is such a job at times. Then, I "see" the people on this board and their strength.....I see my grandbabies and children....and they bring me back from my "sorrowful feelings" most of the time. I wish I could hve a conversation with God, just once. The questions I would have. Hugs, Carol Call me Nat. well, here I am, I'm not totally sure how this group works or if there's a chat room.Anyway I don't have to say about me. I seem to avoid talking about NF which might not be the healthiest thing but it's easier for me to face life head first than thinking of the what if's.I think I'm still totally adapting to the losses I've had. Going deaf, loosing strength, loss of ballance. I used to be pretty active, I loved going for walks in the forest and climbing rocks and jumping little streams and being within nature, sitting in green moss, watching small creatures in my enviroment. Becoming part of that nature, becoming the bark on a tree, becoming the petals of a wild flower. And things changed, I can't do half of what I used to, but I have this will, this sorta anger to just survive and do it with dignity and with grace... and sometimes, yeah, I definatly get frustrated, yes I'd have to totally be honest and admit that my soul gets pretty downright sad. I'm not gonna pretend I'm a hero, or joan of arc, but i can tell myself i am what I am. And some days, when i'm in the midst of writing poetry, or making art, or having the simplicity of the wind blowing against my face like God's hand caressing me, I can sit erect Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 Carol, I feel so bad reading your post. I can't imagine the pain that you endure. I have the fibromyalgia, scoliosis, and arthritis (maybe we are close in age???) but to add NF to that is overwhelming. Wish I could give you a big hug and make it better for you at least one hour each day. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2003 Report Share Posted April 25, 2003 You bet you are a fighter just like the rest of this Crew. This is a group of champions. In fact, I spoke with Dr. Short in Chicago recently, and she called Anne a champion. All of Anne's caregivers have told me how she has taught them so much about life. Perhaps that was her mission in this life. If so, mission accomplished. You and all this crew should be very proud of yourselves. I am. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2003 Report Share Posted April 26, 2003 Almost the same here Carol, I have the NF2 and my wife has the arthritis and the Fibromyalgia. There are times she has a hard time bouncing back. The FMS takes a toll. Mike Call me Nat. well, here I am, I'm not totally sure how this group works or if there's a chat room.Anyway I don't have to say about me. I seem to avoid talking about NF which might not be the healthiest thing but it's easier for me to face life head first than thinking of the what if's.I think I'm still totally adapting to the losses I've had. Going deaf, loosing strength, loss of ballance. I used to be pretty active, I loved going for walks in the forest and climbing rocks and jumping little streams and being within nature, sitting in green moss, watching small creatures in my enviroment. Becoming part of that nature, becoming the bark on a tree, becoming the petals of a wild flower. And things changed, I can't do half of what I used to, but I have this will, this sorta anger to just survive and do it with dignity and with grace... and sometimes, yeah, I definatly get frustrated, yes I'd have to totally be honest and admit that my soul gets pretty downright sad. I'm not gonna pretend I'm a hero, or joan of arc, but i can tell myself i am what I am. And some days, when i'm in the midst of writing poetry, or making art, or having the simplicity of the wind blowing against my face like God's hand caressing me, I can sit erect Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 Re: Call me Nat. Vicki, we are so lucky to have your support and encouragement. Even while your cup is overflowing with challenges, you constantly offer your support and encouragement, your strength. Thank You Vicki Sheryn ______________________ > You bet you are a fighter just like the rest of this Crew. This is a group > of champions. In fact, I spoke with Dr. Short in Chicago recently, and she > called Anne a champion. All of Anne's caregivers have told me how she has > taught them so much about life. Perhaps that was her mission in this life. > If so, mission accomplished. You and all this crew should be very proud of > yourselves. I am. Vicki > > Quote Link to comment Share on other sites More sharing options...
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