This is awesome! thanks! it's so true. thanks to everyone for listening.
I've been reading a book about Lupus the last few days. I found out about it from another member here, sorry I can't remember who it was. It's called, "Unexpected Blessings...Finding Hope and Healing in the Face of Illness", by Roxanne Black.
It's such an amazing book. The author, Roxanne, was diagnosed with Lupus at age 15 and she tells her story. She yearned to have someone else with Lupus that she could talk to, or share with, but she knew no one. So from her hosptial bed and her dorm room in college, she started her own organization called "Friends Health Connection". It is now a nationwide community that has matched thousands of patients with similar health conditions. She envisioned a network that could match patients with others that had the same illnesses and bring them together to support and uplift each other. This idea came about one day when she was feeling sorry for herself and questioning, Why Me? The question, I believe all of us have probably asked at some point in our Lupus journey. Well, Roxanne's mother asked her to consider the answer that maybe she had gotten this because she was meant to help other people. That simple statement from her mother made her think about it long and hard. And what she came up with was a way to help others feel not so alone in their own journey through illness.
I wanted to share a passage in her book that I read this morning. I happened to be sitting in Midas, getting the tires on my truck rotated and the oil changed, so I had a few hours to relax and read. This particular passage touched my heart and made me think of this forum, We Have Lupus, and the ways that we all touch each other's lives each day.
"In starting Friends' Health Connection, I had become a kind of matchmaker of the spirit; people weren't marrying from my connections but finding soul mates who shared the same health problems. Two young men suffering from brain tumors were calling each other every morning for sustenance and encouragement. A woman with cystic fibrosis on the East Coast had bonded with another woman, similarly afflicted, a thousand miles to the west.
What was at the root of this deep, essential connection? It wasn't physical touch--many of these people never laid eyes on one another.
It was something more, something invisible. There's no doubt about it--listening is an act of love.
This wasn't simple listening, the way a clerk hears your description of the kind of shirt you want, but the kind of deep listening similar to the call and response of gospel choirs. One person sings out her pain and trouble and another responds, "Yes, I hear you, I know what you mean." It's a song."
This simple statement "listening is an act of love" really hit home with me because that is what is happening here on this forum each and every day between us. Someone in pain....or depressed....or lonely....or aching for understanding....reaches out, in words that come across our computer screens, and another person in the far reaches of the earth, reaches back and says, "I hear you, I'm listening, and I care about you....go ahead and share your pain with me."
Before I came to this forum, I had spent 27 years alone (even with my loved ones around me) and searching for others, somewhere in the world, that understood me....that understood Lupus...and not just that....people that would listen when I wanted to pour out the agonies of my heart.
Well, I want you to know that I have found those people...and I have found that place of understanding and compassion. It is here. And it is the place I come to at the start of each new day now to find peace and solace for my soul.
Thank you to all of you for listening...for me it is truly an act of LOVE!
much Love to each of you,
This is awesome! thanks! it's so true. thanks to everyone for listening.
I'd rather be hated for who I am, than loved for someone I'm not.
I agree, this is awesome. And I never thought about it that way, listening is an act of love. But when I do think about it, it is very true, because sometimes we just want somebody to listen to us. That alone can make us feel a little better.
Thanks for sharing that with us and yes....so true.Im so grateful for all my love i get from all of you here everyday.Lori,thankyou!!
Lots of love to everyone.
I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx
The passage that you shared was beautiful and, even more beautiful was what you said about WHL. It was my wish, when Conrad offered me this forum, to reach out to others who suffered from this disease (both emotionally and physically) to let them know that no one is alone. This was something that my daughter (Lauri) and I COULD NOT find when we were searching for answers, understanding and just some support.
I don't know how it happened, but this family filled with people who shared my same vision and who were kind, supportive, understanding and who genuinely CARED!!! I do not question the fact that every member here is a person who gives...gives of their heart, gives of their soul and gives all of this so freely.....I just thank God every day for each and every one of you!
Forgive me for taking your praise personally as I know that it was directed at everyone. But, it did touch me personally and as such, I want to thank you and to tell you that I am so glad that you found what you needed here amongst the loving and caring people of WeHaveLupus!
Thank You So Much
Peace and Blessings
Look For The Good and Praise It!
Oh no, Saysusie...I fully intended for it to be taken personally by you. Yes, it was directed at everybody here, but especially you.
As I read that passage in the book, my first thought was how much alike the two purposes were...the one that Roxanne Black had for her organization to bring others together, and your purpose for creating WHL.
I was in awe of how Ms. Black had the courage at such a young age to create what she did and touch so many lives and make such a difference in her world. And I am in the same awe of you...how you could have the courage and love, in spite of your deep sadness and aching heart, to take on the challenges of creating this forum, this place to offer hope and encouragement and knowledge to others that are suffering. To help them through their journey with Lupus. I know you say that Conrad did all the hard work in getting it up and running, but your investment in it, with your valuable time and effort to support all of us with your words...your knowledge...is truly a gift of the heart. What you have offered here to those of us with Lupus is, no doubt, an act of unselfish love.
Lauri would be so proud of you!
Listening is an act of love and I also agree that it is one that is well demonstrated here.
Every day when I touch base here, I am awed, inspired, and humbled by the selfless acts of kindness that occur between strangers who have become friends through this forum. Like you Lori, I check in every day. It is a recharging of the soul that I find so vital. I truly appreciate the passage you shared, as I appreciate the presence of all who are members here, whether they be vocal or quiet, happy or sad. This truly is a home filled with peace and understanding.
Thanks to each of you.
Life is measured not by the breaths we take, but by the moments that take our breath away.
my sincere thanks to you, my friend, lori
what a beautiful tribute to the souls of this forum and especially saysusie. this family is responsible for the peace and tranquility that i have found during my struggles with lupus.
i am eternally grateful for you and everyone here at WHL.
share a smile today
Awwww...you guys are making me cry. And making me feel very loved.
I've been so busy the last few hours posting to people's visitor pages, answering PM's, receiving (and sending) Friend requests, thinking of the people here that need my attention....that I forgot for awhile to check on the New Posts. I'm very happy to see other's that share my feelings about this forum, and the gift that it offers us. When I think back to my life before I joined here, and that was almost exactly one year ago, I wonder, 'How did I get through my days so alone?'....'Who was I helping a year ago?'....
And the answer is...'I was keeping all my love and empathy....all my knowledge and experience with Lupus....all my deep feelings and emotions....locked away to myself'. I was walking through my days happily surrounded by loving family, but unhappily aching inside to know someone, anyone, with Lupus that would know exactly what I was talking about, or thinking about, or feeling in my heart....my soul. I ached for a friend that would understand and always be there when I wanted to talk.
I honestly had no idea that when I finally got brave and made that choice to join a forum, that I would find you guys. And that I would find acceptance, and compassion, and friendship, and someone....in fact lots of someone's that would LISTEN when I had something to share that mattered to me.
Thanks for LISTENING...
And please know that I'm doing my best to keep up my end of the bargain...the listening part. Please don't feel slighted if I don't answer your PM's right away, or respond to your visitor comments, or post on your thread. I went and got myself 49 new Friends on my Profile Page now, and that's quite a challenge to keep up with. Every time I sign on here now, my PM box is so full it's amazing. And you know me, Miss Chatty Cathy...can't seem to write a short post for the life of me. So it's taking me longer to share those answers with you....but if you'll be patient....I promise I won't forget about you.
For you have not forgotten about ME!