Friday, August 22, 2014

The EVERYday challenge of LIVING with debilitating diseases

It's AUGUST and I am already dreading October. I'm dreading the pink washing of "awareness" that comes with Breast Cancer Awareness Month.  Millions upon millions of dollars have been raised for breast cancer research, awareness campaigns and survivor support. Treatments are better. Awareness is Greater. The disease is being caught earlier and being treated earlier. But the cure is elusive. I know these things take time- but as the world readies to cloak itself in PINK in October, the clock ticks for me and many others who are fighting the battle with the disease. We know a little more about who has a better chance at winning the war- but there is the undeniable element of luck.

When I first heard of the ALS Ice Bucket Challenge I was mostly annoyed. I tend to get annoyed easily and especially in the heart of chemo weeks on the tail of a summer that never really developed.  I was annoyed again the people just don't GET it.  If you are dumping ice on your head and not donating to charity- how does that help anything? It seems only to raise awareness that buckets of ice are cold and people will do crazy shit instead of donate to charity. Yet somehow in the past few weeks- over 55 MILLION dollars has been raised for a great cause. SO as it turns out people like to do crazy shit and can be compelled to donate too. For ALS is a horrible disease to have to face, to know that you have a family history of something and you just have to wait for the inevitable, secretly hoping you might be the lucky one. Watching those around you suffer,  wishing you could ease their pain all the while feeling guilty for wishing you could escape the fate they are not so lucky to.

The ALS Ice Bucket Challenge showcases the power of social media. It shows the power that awareness can bring. It HAS raised awareness of a rare disease and much needed funds to help support a community that is too busy fighting to LIVE. It highlights the importance of genetics and need of research for rare diseases. I know ALS families must cringe and dread the ever present cancer awareness and fundraising campaigns- while they watch family members deteriorate with few options to assist them. Most people not even knowing what Amyotrophic Lateral Sclerosis is. I hope sincerely that this campaign changes so much for these families. Just as the March of Dimes changed the face of Polio and has gone on to care for a greater need, I hope this changes the face of ALS. Living with debilitating disease is traumatic enough but to live it with no one around you truly understanding what you are facing and how it impacts your day to day life- forever- unless they have lived with it.

Living with Li Fraumeni Syndrome in all senses can be a debilitating disease. I have seen it destroy families and relationships and dreams. It can rob people of their physical and intellectual presence- essentially robbing them of who they are- much like ALS.  It changes relationships. It takes away birthdays and anniversaries, college dreams, hopes of having a family or a normal day. It robs people of savings or the ability to save. Time is spent on 24 hour care and unplanned surgeries and doctor's visits, at a minimum preventative care.  I consider myself one of the lucky ones- I didn't face cancer until I was 36. I had 36 years of living, I hope luck holds out for more. Many of those years were dedicated to others fighting LFS cancers, both family and friends. But many of them were care and cancer free too. Each one leaves an indelible mark on you. Each one is a little harder. But through those battles I see strength and I choose to see the positive. It isn't easy. It is damn hard when you watch a 3 year old battle multiple cancers- yet 5 years later when she is defying the odds- you retain hope. It is infuriating when friends battle the same cancers over and over- their lives being put on hold, hoping to be able to live. It's humbling to see others who have lost so much, give so much back to each other- because they know how hard it is.

There are hundreds of rare diseases and special causes out there. Each one DESERVES millions of dollars in funding. Most don't get it. I don't resent that, I appreciate it. Those that get funding nationally are those that post the greatest risk to the most people. Rare diseases don't fit the bill. Until you have a rare disease- then it fits every bill.  ALS, LFS,  Adrenal Insufficiency, Type 1 Diabetes,  childhood cancer, and so many more. The people most affected by these diseases are the least likely to have the resources to start fundraising campaigns and devote time to awareness. It is the outstanding people that we touch that are moved by our stories that can really help make a true difference in our lives. A lot of times it is just the luck of timing that determines the success of a campaign.  I know I feel exceptionally lucky to know so many generous caring people that have helped us and many other causes.  I think when we judge less and compartmentalize less and come together more as a community, we can make a huge difference- one rare disease and one challenge at a time.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)