I got this message on my Facebook page the other day:
“Dear Bill …. This is exactly what I have been looking for and can’t tell you how much it is already helping me. I accept my diagnosis but am having trouble dealing with “what happens next”. You have given me a very good tool to bring to the fight. Thank you so much. “
I originally created my blog so that my mother could read my updates, re-read my updates, talk to her friends, re-read my updates and then come to me with questions. That was my original purpose, and it worked (somewhat – sorry Mom!) There’s another purpose here and it’s completely selfish in nature. I do it for me – so I can spew forth the thoughts from my brain, digest them, and keep myself on track and motivated. However, throughout the years I’ve gotten messages like the one above that make me realize the value my personal thoughts and comments bring to others. This is an unintended, knock-on effect that makes me feel great – again, selfish benefits!
Many will tell me to be quiet, that what I do is important to others and it helps motivate others. For that I am grateful, just realize the benefit I gain here as well, my pat on the back and my 10 minutes of fame! But it also reminds me to push forward. If what I do can help someone else with the disease to stay hopeful, or more in control, then I’ve served a higher purpose. If that also helps me tweak the heart string, more importantly, the purse string, that’s even better! I truly believe The MMRF is making the strides necessary to move this disease from mortal to chronic and, at some point, curable. But we need to remember (me personally, I need to remember) how well off we are. I am in a complete remission. Kathy Giusti (founder of The MMRF) wrote a poignant piece in her blog reminding us others aren’t that lucky, that we’re just not there yet. You can read it here (Nov 18, 2013 post). Other friends I know are doing well but are having to take next steps, whether that be treatment or another stem cell transplant, they have to take next steps – and I don’t. I’m thankful but I also feel guilty in some respects.
I know I shouldn’t, but I do – and that is why I do what I do – because I can.
I’m taking steps, LOTS OF THEM. I’ve come to know the paint on the 10th floor stair well, the bobby pin that’s been on the 6th floor stairs for 2 weeks now, the floors where the fire hose wrench is hanging and floors where the wrench is on top of the hose. I’m doing these stairs in preparation for my one year anniversary of my stem cell transplant.
The Empire State Building Run Up (ESBRU) is on 5 February, 2014 and The MMRF is the primary charity benefitting from this event. Last year, when this race was taking place, I was day 4 of my stem cell transplant. Today I am in complete remission with no trace of the disease. On my one year anniversary I will do my best to RUN up those stairs in the Empire State Building, because I CAN – and so many others can’t! I may walk the last bit but I know I will make it – and I will be asking you, and yours, for donations – that will be coming up soon enough. But this brings me to my next segment: What Can You Do?
The Corporate Run-Up Challenge – Get In. Give Back!
The MMRF has a number of corporations joining in this Corporate Run-Up Challenge: Goldman Sachs, Citi, Deutsche Bank, Millennium, PWC, Google and many more. But not enough – please pass this along to your friends, colleagues, or anyone that wants to put in a team of three to race ESBRU and raise money for The MMRF. Some groups have put in two teams, one for the ‘race’ and one for the ‘raising’. Please pass along my blog and my Fbook post linked to this blog and help me get teams signed up for ESBRU now. I offer myself to any team that is signed up for the Corporate Run-Up Challenge to help get the word out and raise funds for The MMRF – just let me know or reach out to The MMRF and let them know. To sign up your team simply go to TheMMRF.org/GoVertical
Something a little less physical please – and in my neighborhood!
So maybe you aren’t as crazy as me and don’t feel like stressing your gluts, quads and knees with thousands of stairs per week, we can work on something different for you then! Do you have a neighborhood watering hole? Can you host a guest bartender night? Be my guest bartender – if you do it in the City, I will try and join you. If not in the City, I can try and join you via internet but I would love to join! This is much easier than last year – nobody has to shave their head! Just get a bunch of friends out for drinks and raise a few dollars for The MMRF – I can work with you on how to process the donation.
Afraid of your friends when they’ve been to the local watering hole?
Or do you have kids and want to get them involved? I’m happy to help add my name to any bake sale, walk or jump rope contest that you want to do to help raise funds. You’ll see on my PGHL Facebook page the pancakes my brother made last year for my “hair today, gone tomorrow” logo! What about “hair today, gone tomorrow” cupcakes? Whatever you want to do, I want to help. I will start fundraising in the very near future so would love your input, your help and of course, your money for The MMRF!
I’m stepping off my soap box for now. Thanks for reading, thanks for sharing!
(n.b., “@1=1576 — at one year, I will be climbing 1576 steps! :)