I wrote last week about being your own advocate with your doctors and health care, but what about advocating externally? Many of us hold strong beliefs, yet keep them internalized or among those who share the same opinions. Politics, religion, sports – you hear ad nauseam debate on these from every talk show host, amateur blogger (hey, that’s me!), drunken bar patron, and annoying relative at holiday dinners. Yet, when it comes to stuff that affects our daily health – like, say, skin care and melanoma awareness – the pockets of voices shouting are often drowned out by the silence of indifference.
I’ve spent the last 12 years leading by example – my closet filled with long sleeve shirts, a hat always tossed on top of the beach bag, suitcase, or Jeep stick shift. Sunscreen is everywhere. I have not been very evangelical about it, though – plenty of friends and family still sit in the sun for way too long with way too little protection. While I quite often give my disapproving looks (inherited from Mom) or make a comment or two – have I really done much to raise their awareness of the risks? (Well, other than get melanoma again – the sacrifices I make…) Most anyone knows getting sunburn is a bad idea, that you should wear sunscreen, etc… and yet so many still end up exposing themselves to the damage the sun can cause.
I was humbled and honored to be presented with the Melanoma International Foundations’s Patient Advocate of the Year award on Sunday. It reminded me that just typing my experiences about this battle isn’t enough. To truly reach people, advocacy requires depth of knowledge, the willingness to share that knowledge, and an ability to communicate so the intended audience, or at least part of it, comprehends the message and how it impacts their lives. Ideally, an advocate can help show a better way without coming across condescending (another inherited family trait that I haven’t seemed to fully shake). The last thing anyone wants to read is someone nagging about harmful UV rays, sun-protective clothes, and zinc oxide.
Being around an organization that does advocacy for a living makes you appreciate the voice you have. Not many people get to share their story online a couple of times a week; fewer still are able to affect such an influential audience as late-stage cancer and melanoma patients. Part of my goal has already been reached – I am showing fellow oncology warriors and (too many) future cancer patients the path of strength and hope.
There’s a second part that will never be able to be measured, though – how many of you out there will read this and remember the sunscreen this summer on Avalon’s beaches, or to keep that hat on boating through the back bays of Ocean City and Margate? How many will decide it’s prudent to limit mid-day sun exposure, to wear long sleeves while cutting the grass, to cover the back of your neck while weeding the garden or helping a buddy build his deck? How many people will NOT end up in the oncology wing because they decided to make small changes in their lives to keep from letting the sun turn a tiny mole into a life-altering disease?
There are many of you that will (or already do) heed the melanoma survivors’ warnings; there are also plenty who won’t listen regardless of my story or anyone’s words of wisdom and choose to play Russian Roulette with their health so they could look darker for 33% of the year. For those in the latter group and the remainder who know they should protect themselves but too often forget (like the two very good friends/clowns who went to the Safe From The Sun walk and got sunburn), hopefully some of what I share sinks in.
The advocate in me wants you to remember my hospital pictures, the IVs and surgeries and extended periods with nothing to eat or drink, the time away from my family, and the months of lousy health before putting on that tank top and SPF 2 for a day out this summer – or just neglecting sunscreen at all. If you are someone I know, I’ll make sure to remind you, often. It’s much better to have a friend harass you a bit too often then have to visit you in the hospital – or the cemetery.
On a side note: I would like to extend many thanks to the family and friends, over 200 strong, who participated in MIF’s Safe From The Sun walk/5k Sunday. Special thanks to the Board of the MIF for this special honor; to my brother and sister for hosting us; and to Mom and Dad for quarterbacking the “Team TJ” participation and leading our team to the top fund-raiser spot, with over $11,000 in contributions. Your support means so much and the showing on Sunday speaks volumes about the love you give to Jen, Josie, Tommy, and I. Thank you.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »