Posted by Bobby G on May 27, 1999 at 03:57:15:
I am a new comer and I just want to say thank you to everybody on this web site. You have no idea how much you have helped me and my family. Just by being here and giving your stories you have given me new hope. I am going to be up late tonight because the headaches are coming back. But its OK, I am not that worried. You see, for me the big problem with cluster headaches is not the attack. It is all the financial, social, and mental stress. Which leads to feelings of worthlessness. I could take the pain (Oh, I am just like you, I take anything to stop them) if I could have some kind of ordinary life. But life is not setup for us. We are an orphan disease and there is not enough of us to justify making a change that will help us. We have to help ourselves. And that is the thing for me. While family and friends tried, I was the only person that could put up with me and my headaches. Now I am not feeling so worthless. Another thing that causes depression is lack of control. When we have no control over our lives and nothing we can do makes a difference, we tend to lose hope. Well you have given me hope. If it weren't for cluster headaches, I would not be the person I am today. We do whatever we can to lead as normal a life as possible. I was doing pretty well. I had become a jack of all trades because of cluster headaches, I went through a lot of jobs but I did my best and learned. I was doing pretty good for being episodic, I was holding down my job as a Social Worker for DHS. Part of my job was AB&D (Aid to Aged, Blind, & Disabled). I became associated with OPEA (Oklahoma Public Employees Association) and helped to organize workers and worked with insurance coordinators to help with benefits. I was selected as an Intern for Leadership OPEA. This was really a great experience for me. We got 10 weekend training sessions in a diverse area of fields; lobbying, insurance issues, volunteer organization, organizational structures, etc. I was active in politics and a few people even asked me to run for State Representative. But cluster headaches killed all that. Instead of the one helping, I was the one that needed help. You know the whole time I worked as a social worker, I always helped the people and preserved their dignity. I was poor at paperwork because I was strong on getting something done besides meticulous documention. Organizations get that way sometimes as we have all seen when we try to get help. Well now I don't feel useless anymore. I finally found someone that needed help more than me. This organization needs help, and I have been trained to help. I have decided to commit myself full-time to working for us. I feel so strongly about it, that I have gone and gotten commitments from friends, family and associates to raise money to pay for my expenses for one year. NO I DON'T WANT ANY OF YOUR MONEY!! I am going to ask for something more valuable than money, I am going to ask you for your time. You can always get more money, you can never get more time. People with cluster headaches need all their money. As someone who has had to sell almost everything I know. Time is an important thing to ask, espescially for us. Once I figured that time could not be replaced, and that I had less of it because of cluster headaches, I decided never to waste any. While we are on the subject of money, I will let you know here and now that my philosphy is to use TPM (Third Party Money) I will work as a fundraiser to get outside sponsors to fund us. We need to get OUCH in place so that we can all decide where the money goes.
The money I get from family, friends, and other backers to cover my salary (details are available in soon to be released email between DJ, Barbara D, Drummer and I) will be placed in an appropriate instrument so as to protect the integrity of OUCH. Look at like this, some people are going to pay me enough to work full time for you guys. I am a team player and will work with OUCH (because it will be the membership) in whatever capacity everyone sees fit. Now for a lot of you, this is the first thing you may have seen or heard of me. I found this place 3 days ago and have been working ever since. I am making headway and am making a difference for all of us. By helping you guys I am helping myself. I know I may have insulted some people that are dedicated and have been working all along by really pushing for results. For that I am sorry, but I can't rest on my laurels between headaches as long as anyone is suffering. We should adopt the motto, "if one of us gets stabbed in the back, WE ALL FEEL THE BLADE."
If you agree with what I have said please help. I need partners with CH's, heart and soul.
Below is a format that is designed to help Barbara D. keep track of you and where you wish to help.
Volunteer Assessment Sheet
Name: Bobby Gilliam
404 NW 3rd
Antlers, OK 74523
Email: bobby.gilliam@mciworld.com
Occupation: Entrepreneur (I work for myself, no one else will put up with CH)
Times available: 8:30am to 9:00pm M-F (headaches permitting) 24 hour on call.
Skill, Previous Positions, Training or ways you think you can help:
Computer literate (better in some areas than others), good at Microsoft Office 97 professional. I have worked in administrative positions with volunteer membership, have experience in marketing, bookkeeping, sales, lobbying, Social Worker for 3 years, editor of two newsletters. Etc.
Additional Assets (NOT MONEY): Will donate the use of 24 page per minute printer, Voicemail/Message Center/Fax-on-demand computer system to get information out to those not on the Internet, 2 computers (and maybe a new one on the way).
Area or type of work you are most interested in: Gov't Relations, Third-party sponsorship marketing, lobbying for better rights. I will back up for anyone I can.
Have you done any work already, and if so, where can we find it? (so we don't have to do it again)
Do you have any friends, family or associates that might be interested in volunteering to work with us?
Name: Yes I do, but I will contact them for us.
Email Address.
PS We have to work in CLUSTERS to make this thing successful. I hope this is fairly coherant as I have a headache coming on so I haven't taken the time to edit closely. But I figure, What the Hell, if you guys can'