I have been doing this for so long, I can barely remember the person I was before I started writing about CLL, back in 2002. It has been a pretty wild ride! My heart-felt thanks to all the friends I have made on this journey. You made it possible for me to get out of bed each morning, especially in the aftermath of my husband’s death in the summer of 2008. I do not think I would have made it but for the generosity and affection of this patient community. Thank you, from the bottom of my heart.
But I must confess I have been experiencing burn-out for the past few months and I realize it is time for me to step back for a while. You need a patient advocate who is quick on her toes, brings a high level of energy & empathy to the “job” but takes no prisoners in the process of representing you. I hope I have been all that, and I hope I will fit that job description again sometime in the future. Wish me luck. I would like to think this is just a “so long” and not a “good-bye”.
Before you freak out, I want to make sure you understand we are not (repeat, not) shutting down the websites. CLL Topics, Updates and Harvey’s Journal websites will continue to be hosted and available to all who are interested in visiting them (many thanks to our devoted webmaster, Radha. Way to go, kid). Between the three websites we have a tremendous amount of information. I hope you will continue to use these resources to learn more about your disease, your therapy options etc. Please develop the habit of using the search box at the top right hand corner of the home page. It is a pretty good search engine and it will help you find specific articles that are of interest to you.
Many of you have honored me with your friendship and support. You know who you are! You are not just “members” or “patients” to me, I can no more walk away from you than I can walk away from my own family. I will continue to respond to emails from you, and if you need my help, I will do my best to help in any way I can – including my infamous “2 cents” worth of layperson reading of the tea-leaves.
Monthly meetings at my home will be on hold until I get back from my “sabbatical”. We just finished our October 6 meeting. Very intense, full house. It has been a pleasure meeting so many of you face-to-face. November and December meetings we had announced earlier are hereby cancelled as well.
I will still honor requests fortelephone consultations when we have complex issues that cannot be discussed in emails.
There is no question that I will be writing far less frequently.
Seeing how things are going to be different around here, I think it is only fair that we will stop accepting donations, starting January 1, 2013. If you had been planning on hitting that donate button but have been putting it off – hint, hint – this is your chance to stop procrastinating. As of the beginning of the New Year, the “Donate” button will be removed from the website.
The last four years have been a very hard slog for me. You have CLL of the body. As for me, I have CLL in my soul. It is just as incurable, just as deadly as the physical variety, there is just as much mind-numbing fatigue of the body and spirit that “normal” people do not understand, just as much grief when I lose friends. There have been too many of them over the years, scars on my psyche that won’t heal because I keep picking at them. When there is a cure for you, I too will be cured. In the meantime, I need a bit of time to sort things out in my own head and recharge my emotional reserves. Spend more time playing with my new puppy dog. Perhaps re-visit Dharamsala when I go off to India in a couple of weeks. If he had been still around, PC would have done his typical snarky thing, rolling his eyes at my need to contemplate my own navel for a while.
Remember, no one is indispensable – not even little ol’ me! There will be other patient advocates stepping up to the plate. The only one who gets to sit in the driver’s seat is you, so please stay engaged in your own healthcare.