Hi Everyone,
This Discussion has made me do a lot of Soul Searching & Self Examination.
There is a quote by C. JoyBell C.that says "“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you're going, but you know that so long as you spread your wings, the winds will carry you.”
I have been very ill for 10 years with multiple Rare Disorders resulting in extreme Brain Surgeries and a rebuilt C Spine. I live with daily chronic pain that is never below an 8 on a 1-10 scale with pain mgmt. Before 7/10/2001 I thought I was totally healthy and my life was perfect.
I found Ben's Friends out of desperation. I remember the day vividly, February 4th 2012. I had just come from Radiofrequency Ablation Therapy. I couldn't be under any anesthesia because they were trying to deaden the endings of cervical nerves and it felt like I had been branded from the inside out for two minutes on each nerve ending.
I was done with it all..... the endless Doctors and Treatments. Tired of the Pain and feeling so bad all the time. Tired of loosing family and friends that could never understand... and the isolation. Who knows...maybe it's self isolation....that way you can't get hurt anymore. Tired of the decisions and having to pretend life meant anything anymore so others would just leave you alone and live their lives. Tired of existing but knowing I didn't have a choice because I love my child more than I hate my circumstance.
Then I searched for discussion forums and Found Ben's Friends Chiari Malformation Forum (www.chiarisupport.org). That's my most serious disorder.
I filled out the profile, not really expecting much. Honestly I thought I would find people that had similiar physical circumstances that complained a lot, but was as lost as I was.
The first day I familiarized myself with the Forum, then began to read the Discussions. The Next Day I read more Discussions and continued to do that and started participating. I began to realize my Chiari experience as well as my Career and Education could help others. Many Members were newly diagnosed and scared. I made friends. Actually I made wonderful friends and the interesting thing each day I became more involved and more interested in other Members that needed a friend and someone that understood. I began to remember who I am, and let go of what I had become out of pain, hurt, disappointment & anger.
I was given my life back. I am not well but I am in a good place. I Moderate several Forums and work on other things for Ben's Friends. I have made a new Family that I am so Thankful for. That understands and is there for me without limitations or expectations. I have a 2nd Mother and Sisters and Brothers and Life Long Friends. They are all more precious to me than I could ever convey by words.
So, to Answer the Question: What does Ben's Friends and the Forums and Members mean or have done for me? That is simple.
They have given me the ability and support to find myself and forgive myself and release the shame of chronic illness and most importantly to be there for others on their Rare Disorder Journey. That is gifts I will never take for granted.
Ben's Friends truly saved me from myself. I will never be able to Thank all of you and God enough for all the blessings I have found through the worst time in my life. I truly care for you all and will do everything possible to help others and Ben's Friends flourish.
Tracy Z.
I also encourage everyone to join this Discussion. I have honestly been thinking about how to answer this since March 18th, and it's been a process, but a very good experience. My Birthday is tomorrow and it was time to clear away the remnants of all negativity and fully embrace my life as it is, not as it was or could have been.
Ben's Friends social development work is captured in this awesome Harvard Business Review article Deliver Big Impact on a Small Budget.