My Relay Journey

Relay Stories_004

 

I come from a rather large extended family in RL and over my 50 years of life, have lost several extended family members and friends, not all to cancer.

My cousin Rogers was one that touched me in a profound way. He was an firefighter and a first responder. He contracted cancer from one of the fires he was called too. I had attended many funerals by this point in my real life, but nothing could have prepared me for this one. If you ever seen the end of the movie Backdraft, you will know what I am talking about. To this day, I cannot handle seeing a funeral attended by first responders in their dress uniform and bag pipes playing Amazing Grace.

Some 24 years ago, my father was diagnosed with colon cancer. Thankfully, it was found early and was quickly over come. But I remember the long nights he endured. I room was in the basement and I could hear him wake in the night, from the pain in his legs due to the treatment regiment, that was keeping him awake. He’d come down and we’d sit and talk for hours. My mom never got her driver’s license so I was the family taxi. Took him to his treatment, doctors’ visits, grocery runs and all the other errands they needed. That was my first experience as a caregiver.

Between this time and when I found SL, I had lost 3 close friends to cancer, two with liver and one with pancreatic cancer.

In the fall of 2010, I had just created my 2nd avatar in SL after a disastrous first go. I had found this place to call home for newbies and people needing shelter, from all the nastiness of the grid and life. There, I met this soul that shared her cancer journey openly. It was my first experience to the worse phrase ever spoken, “there is nothing more we can do.” From the time I met her to her last day, which was less than a month. She story changed me and spoke at her wake we held. That was the day, the path of my life changed.

That spring I found Relay For Life on Second Life. At Kick Off for my first RFL season in 2011, was and still is, my most defining Relay moment. By the time the key note speaker began her presentation, I was already in tears. by the end, I was mush surrounded is spent tissue. I never did hear her words thought all my sobbing, but I felt every pain she shared and her hope.

Between that first Relay Season and last year, I have been involved with every RFL season here in SL, help launch RFL in InWorldz now going into it’s 5th season and involved with RFL where I live in RL, for the Canadian Cancer Society and have virtually and literally walk 3 Relay events per year, for the last 4 years.

When I first became involved with Relay, Dwen warned me, that I will know grief. Between Kick Off of 2011 and last year, I have lost so many fellow Relayers, people I considered friends. Many were hard to handle. One in particular this haunts me to this day. It was two years ago at an RFL event in InWorldz. Clint Westwood was a staunch supporter of our Relay, sponsor from day one and played at many events. Loved the blues and a pillar of the community. His last event he played, he told of his cancer. it was not good. He told us his days were numbered and that this would probably be his last event he could do. Everyone there was devastated including me. Dwen’s words came back and finally knew what he was trying to tell me.

In the late winter of 2015 my father began his final journey from this life. It happened gradual over several months, and it gave us the time to come to terms with it. It gave us the time to say all things I needed to say, things that we would be saying every day of our life to our loved ones. May 27, 2015 I began a beautiful journey through grief, because of the time I had to come to term with his eventual end, of a long and good life and 23 more birthdays. He ruled over cancer.

A few short month later, on Sept 4, I receive a call from my sister that started with “Are you sitting down?” and was told of my other sister’s shocking and sudden death, and how her husband came home from work to find her on the floor. My sister needed me to go with her, to break the news to my mom. That was the hardest day of my life, and began the darkest period in my life. Up until this point, I thought I knew grief, but I was so very wrong.

With a lot of help from family, my darling Panza, Oldesoul and many, many other close friends, I manage to keep moving forward. I also began looking into grief and grief counseling. To my horror, I discovered there is a condition called “Prolonged Grief Disorder.”

“Prolonged grief disorder is not synonymous with grief. Complicated grief is characterised by an extended grieving period and other criteria, including mental and physical impairments. An important part of understanding complicated grief is understanding how the symptoms differ from normal grief. The Mayo Clinic states that with normal grief the feelings of loss are evident. When the reaction turns into complicated grief, however, the feelings of loss become incapacitating and continue even though time
passes. The signs and symptoms characteristic of complicated grief are listed as “extreme focus on the loss and reminders of the loved one, intense longing or pining for the deceased, problems accepting the death, numbness or detachment, bitterness about your loss, inability to enjoy life, depression or deep sadness, trouble carrying out normal routines, withdrawing from social activities, feeling that life holds no meaning or purpose, irritability or agitation, lack of trust in others. The symptoms seen in complicated grief are specific because the symptoms seem to be a combination of the symptoms found in separation as well as traumatic distress. They are also considered to be complicated because, unlike normal grief, these symptoms will continue regardless of the amount of time that has passed.”

I am borderline on this one and where I am on my Relay journey. But no worries, I am still moving forward. Every day is getting better because of the experiences I’ve had in Relay and the stories everyone shared. I am not the same person not too long ago.

My March 8th, 2015 Relay Moment

My very first Relay Moment was on Saturday March 12, 2011 at the kick off ceremony at this BOSL Stadium. I had just found Relay and had the good fortune to joined Harmony of Hope, as deer in the headlights volunteers, I mean completely oblivious to what I got into.

2011 RFL kickoff Celebrations1Well it didn’t take long for me to leap into the unknown, again, I mean within minutes of the first team meeting, when I ask how Harmony of Hope promote themselves on Social Media? Random who was the team captain, basically said they didn’t, but sounds like you will be our social media promoters and promptly volunteered me to the role, and I dove into it.

Next thing I know, I am now on the committee under Poppy Zabelin, in the co-chair of PR role and working with MamaP Beerbaum, Nikki Matherson, Dwen Dooley, Trader Whiplash and so many others wonderful people that first year.

I do remember how I felt, and what I first believed, about Relay For Life of Second Life’s potential could be, with the right pieces. I shared some of my insights and feelings in the end of season report Poppy and I wrote, that fall. I still have it. In it are suggestions to work with the ACS to get information on cancer progress and mission. Build of our Social Media presences, coordinate with all radio, streaming channels partners, photographers, machinimas creators and all news organizations all over Second Life. And that we need to push into the part of the grid that never heard of Relay For Life of Second Life and since For Life of Second Life is worldwide, we should focus on that too.

Since my time that first year, all my friends and mentor have matured on to other roles, on to other challenges, still spreading Relay, influencing new people, new teams, new ideas, as well all have because that is the nature of Second Life with server and view improvements. We embrace change. We fight through bugs, lag and keep coming. We are that unstoppable tide.

But today’s kick off was something special for me. One might say it a new entry on my Relay moments list. I was brought back full circle, just as one would lap a Relay track, back to that first Relay moment. Again I was moved by a similar euphoria from the crowd around me, over the words I was hearing. As cast an eye on the work everyone has done leading up for this seasons and the growth in promotions across so many media channels, Nikki recording the ceremony in video, Ishatar recording voice, media people and promotions everywhere, I just had to shared my silent giggle.

I truly believe, 2015 is going to be another record setting year, one that will make 2014 look like a warm up for the champion fight. The very heart of what I think that makes Relay For Life of Second Life, so flipping amazing, is that Second Life is essentially a social media network, on steroids. WE the users, are beautiful fanatical and passionate people, that chose to live in a world with no borders and able to create the unimaginable. How could we not succeed?

I would guess 3/4 or more, of the worldwide Second Life grid, still does not know about Relay For Life of Second Life. And I am also guessing that if every team made a sustained effort all season long, to reach out into that unknown grid and shouted our international message, I would NOT have to guess at what those results would look like.

In 2011 and I still do today, firmly believe Relay For Life of Second Life has the potential to have a million dollar season. My tears today, besides being wept for the wonderful words of people I admire, is that we will break half million dollars, in 2015.

Two Roads

It is funny how the universe works when you are looking for answers. Bits and pieces of unrelated experiences floating cross your landscape to the world, while you seek relevance.

Lately I have been immersed in the world of a certain type of caregiver, the one that is having to dedicate all of their time in the care of someone that needs total care, and looking at that same situation from the one in need of that care, the question of quality of life for both patient and the caregiver are rarely spoken openly and their support through this journey is so very limited, if at all. I know that healing the mind is a key component when healing the body, yet I see little in the way of support for full time caregiver whose nemesis is not enough time and the patient when the state of medical practice, is just not there for their illness.

The other day I was looking up ideas for some fundraising event coming up soon and hit on this poem that resonated with me.

The Road Not Taken by Robert Frost (1874–1963)Two RoadsTWO roads diverged in a yellow wood,
And sorry I could not travel both              
And be one traveler, long I stood            
And looked down one as far as I could  
To where it bent in the undergrowth;

Then took the other, as just as fair,        
And having perhaps the better claim,    
Because it was grassy and wanted wear;              
Though as for that the passing there      
Had worn them really about the same,

And both that morning equally lay          
In leaves no step had trodden black.      
Oh, I kept the first for another day!        
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:          
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

When I first joined the ranks of the Relay For Life fighters, my first thought was that advocacy would be my weapon of choice. I would seek out the need and let their stories be my guide for the work we do. We are fulfilling many needs with our efforts, but we have so many others, going unfulfilled.

One third of the population of Canada and the US is provide care for a chronically ill, disabled or aged family member or friend. The typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed. More than 37% of caregivers have children or grandchildren under 18 years old living with them. Spend an average of 20 hours per week caring for their loved ones while 13% of family caregivers are providing 40 hours of care a week or more. They just don’t have the time to look after themselves. And when things begin to go downhill for their loved ones as they often do, suffer alone.

I’ve been the shoulder to cry on for a few friends going through cancer and the ones that opened my eye are the second timer, who’s cancer, had returned. Two of these people are people are is polar in their circumstances and their stance while being the same. One is on his third fight with an inoperable cancer and does not wish to go through thin chance chemo offers, for the probable side effects he will have to live with forever. The other is on her forth fight with cancer for which cancer has taken so much of her body. She wonders if the fight is worth it, when all that she was, is gone and is now need of total care.

In my mind’s eye, both these people need care, support and a voice. Caregivers spend vast amounts of time, money, sacrificing career, family and emotional health in the care for another. And the support available to all concerned when the odds are no longer in your favor and time is all but run out, are linked.

I am still lost in all this, but I have started down the path less traveled, to learn how to truly help and hope I can make a difference.

I do know we need to be their warrior
to both these groups of people
when time as all but gone
are left silently screaming to be heard
We need to be their voice.

 

My eyes are open and I am Lost

Over four years ago, I found Relay and like most people, it changed my life. It changed how view life and what truly matters in it. As I began to come to terms with the scope of the issues surrounding cancer, I’ve come to realize a great number of things that need addressing.

We work so hard supporting the survivors but what about the caregivers? The latest numbers indicate that in U.S., 1/3 provide care for a chronically ill, disabled or aged family member or friend. The typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed.

I recently joined the discussion on a support site hosted by my Canadian Cancer Society called Cancer Connection and I have read through 100’s of postings. I’ve come to see that caregivers are so busy juggling multiple lives they just don’t have the time to fight for caregiver’s rights, recognition, financial and emotional support. We spend so must time giving support the survivor, we acknowledge the importance of caregivers, but seams to stop right there. Who and what support systems are there really available for the caregivers?

Over the last bunch of years I given support to many cancer survivors, but the ones that linger in my heart and mind, are those few that are multiple cancer survivors. They know more about the roller coaster of emotions of walking the long night of the cancer journey. They know what in store and truly wonder if they can go through it again and inevitably the question of quality of life is foremost in their mind.

The first time someone I was supporting said they were thinking of not going through with the operation and treatment. I got lucky with my gut reaction and got mad. I do know now, it might not have been the right approach but in this one case it worked, for the simple reason, they needed a wake up slap in the face because of theirs and their doctor’s attitude, were in conflict with each other.

Now I am helping another and I know this approach will not work this time. I’ve ask so many people about how to deal with this one question, and the only answer I get back is there is no easy answers. I feel that I am lost in the wildness, walking in circles.

DSCN2094These two polar issues are linked and both need to be addressed for the sanity and health of caregivers and those they care for. I just don’t know where to find the answers I seek.

A Call to Arms

There are a tons of wonderful groups out there helping fight against cancer, one of which posted something that tickled me.

Stupid Cancer Manifestowww.facebook.com/stupidcancer

On November 15th, Stupid Cancer on Facebook posted this with the following caption “What do you believe? Should we even be using military terminology when it comes to facing disease?”

Stupid Cancerhttps://www.facebook.com/stupidcancer/photos/a.10150120311596306.300489.10900196305/10152817230801306/?type=1&theater

Yes I do believe we should be using military terminology when dealing cancer.

We have an army of Relay For Life people in 23 countries around the world, all organized into divisions and sub groups, each with their own lead ship, taking their lead from umbrella groups and leaders.

We have countless other groups and organizations in this battle, from Marrow Donor Programs, groups that target specific types of cancer or cancer groups, Cancer hospitals, education and awareness, and so much more, all with support coming in from areas.

Our fight covers all aspect of this fight, from R and D, curing the victims, support for them and their families at every stage of their battle or battles.

And we are working on defense with improved early detection and education of our enemy, and what you can do, to lessen you chance of encountering this foe.

Cancer doesn’t discriminate. It will hit anyone, any age, any race or demographics group, and will always have collateral damage, as cancer does hit one bird, it hits the whole flock.

And here we are, standing shoulder to shoulder, firm in our belief, we will be victorious in this war against our enemy.

So yes, they did not lose their battle, they are the honored casualties of this war. And like we remember our veterans of real wars, at every Remembrance or Armistice ceremony, we honor our cancer veterans, past and present, at every Relay event around the world.

In the finest tradition spoken by armies throughout history, I shout out “I don’t think cancer knows who he’s F%$*ing with!”

For the love of life and the life of one loved

Sunday August 24th, 2014 the Relay Rockers held a special event and celebration to give thanks and to honor three very special people.

The first was a warm dedication to their co-founder and late friend Alliez Mysterio with the creation of the Alliez Mysterio Award followed by this years recipients. What follows was gratiously shared by Trader Whiplash.

The Relay Rockers are please to present the Alliez Mysterio Award to Honor our late friend and co-founder.

Alliez Mysterio came to Second Life in 2003.  A pioneering virtual explorer Alliez saw the potential of the nascent private island sims and in 2005 her first sim, Rue d’Alliez opened.  From that single island d’Alliez Estates spread over the grid, growing to more than 150 islands.  She established a system of ownership and rentals that has provided a home to many residents of Second Life regardless of their virtual manifestations, lifestyles or interests.  She made every effort to accommodate her tenants, was always there to address issues and was loved by all who came to know her.
Alliez_001In 2005 she joined with Trader Whiplash and Nuala Maracas and formed the team that became known as the Relay Rockers.  From 2005 until breast cancer took her from us in 2013 Alliez was a steadfast supporter of both the Relay Rockers and Relay For Life of Second Life.

Alliez_007This award will be given annually to the person or persons who, in the opinion of the team’s award committee, have exhibited “Relentless Dedication”  and have made an “Enduring Contribution” to the Relay For Life of Second Life.

Our first winner of the 2014 Alliez Mysterio award is also a pioneer.  When Relay began in 2005 Second Life was a different platform than it is today.  While it represented the most advanced 3-d communications platform ever, it was far less sophisticated than the Second Life of 2014.  Our Relay relied on simple scripts to collect donations.  Security issues, while not serious, were a consideration, and a means to sell items to benefit the American Cancer Society had not yet been developed.
 
Dwen Dooley,  began to find new means to improve our Relay tools. He created new ways to sell items and to spread the word about our teams and our events.  Dwen created the Event Boards that we see all over the grid,  he saw the need for Raffle Vendors, Dual Team Kiosks and Auction Kiosks.  He also created the donation givers and the halo givers and continued to advance all of these devices as quickly as Linden Lab provided new and updated means.

Dwen Dance OffDwen who began in Relay as a Relay Rocker,  served as event co-chair from 2010 – 2013. A survivor himself he spoke loudly in support of the Mission of the American Cancer Society and our very special Relay.  He even encouraged his good friend Stinky to become the Rodent of the Hour with the creation of Skunking and De-Skunking Kiosks.   He monitored convio and maintained the recording systems that enable the American Cancer Society and the Relay For Life of Second Life to continue to grow and reach ever stronger numbers each season.  

Alliez_002Therefore, the Relay Rockers are honored and proud to present the 2014 Alliez Mysterio Award to Dwen Dooley, for his  relentless dedication and enduring contributions to the Relay For Life of Second Life.

Our Second recipient this year has lead Relay For Life to two record breaking seasons.  A member of Relay For Life since 2007 she began as part of the TVCH teams.  In 2008 she formed the Relay AllStars and with her teammates began what is now an annual mega-event, the Home And Garden Expo.   

She came to the committee in 2008 as a Live Music coordinator. In 2009 she was invited to join the committee on the event day staff. She became a Co-Chair in 2011 and served with her friend MamaP Beerbaum as our Relay grew in size and stature in both the virtual and organic worlds.  In 2013 she was chosen to serve as Event Chair and shepherded Relay to another record season as the largest virtual event passed the $2,000,000 mark.   This season she was at the helm as Relay set records for teams, participants and raised an incredible $410,000!

NikkiNikki Mathieson graced Relay For Life with her steadfast determination, and her ability to find the right people for the right roles.  She took the lessons learned from her predecessors,  Fayandria Foley, Tayzia Abbatoir and MamaP Beerbaum and molded them into a vision of Relay that allows us all to Celebrate Remember and Fight Back as many teams walking together as one world!

Alliez_003Therefore, the Relay Rockers are honored and proud to present the 2014 Alliez Mysterio Award to Nikki Mathieson for her relentless dedication and enduring contributions to the Relay For Life of Second Life.

Trader Whiplash

I never had the honor to formally meet Alliez Mysterio before her passing, but I did have the immense pleasure to witness the outpouring of love and grief at her wake. And to witness her legacy by following the antics and effort the Relay Rockers since my involvement with Relay For Life of Second Life from 2011. The Relay Rockers are a dedicate group of warm, hard working and supportive people, that I am delighted to call family, as do for so many other on the grid do.

I had the pleasure to work with Dwen Dooley during my time on the committee during 2011 and 2012 seasons and there is no one person that I can think of, that has worked harder to make Relay For Life of Second Life the success it is today, by his creation of all the fundraising and promotional tool we have on the grid. Tools we are now being emulated as others grow Relay For Life of InWorldz in the foot steps of the tireless effort Dwen blazed. He is in my humbled option, the strongest candidate for the Relay For Life of Second Life Hall Of Fame and have no doubt what so ever, he will grace that special place of honor someday.

And Nikki Mathieson. She stands right next to MamaP Beerbaum was the two people I adore the most in Relay For Life of Second Life. When Nikki laughed, you laughed, when she cried, you cried. Need I say more?

Because of these people and groups mention in this article, and countless more all over Relay For Life of Second Life, that I will always smile warmly, when move on from all this and think back on my time with all these wonderful and amazing people, doing this thing we do for HOPE and the CURE. For they are all such wonderful people.

Life of Relay

The coffee finally waking me up from my first real life Relay, as a member of the Team Committee and was going to say my most moving Relay, but that’s not entirely true. Nothing as moving as one’s first Relay, especially if that Relay in a place, like Second Life.

We’ve joked and had serious talks about what makes RFLofSL so unique. The perfect weather, no bugs and mosquitoes, private kitchen and rest room steps away from the keyboard, with the “walk and talks” and never miss a beat, all the tools we have at our disposal, thanks to the like of the tech division and communications within Second Life groups IMs and notices, and just the endless creativeness of the grid, there are no real limits. As a newbie, pretty hard to have a more moving experience than a Relay For Life of Second Life, Relay.

But last night’s real life Relay For Life in a place called Kitchener-Waterloo, Ontario, I had my second most moving Relay.

Started by arriving 4 hours early to help set up, get everyone registered with the event kits and t-shirts, distributed to all the captains. With just over 70 teams to process with finalizing all their teams roster, funds raised, score cards tallies and goodies distributed, is one labor intensive process the virtual side doesn’t have. But it was amazing to meet all the captains face to face, after all the correspondence we’ve had.

Opening ceremony and survivors laps were delicious with everything I’ve come to know. I was struck by the fact our Relay was large enough, to field a full track of survivors and caregivers. I was a beautiful celebration in yellow. I kick myself for forgetting to take pictures, as I was too busy cheering and applauding all the survivors as they took the first lap. I was really was caught up in the moment.

Several busy hours later we arrive at the Luminaria Ceremony time, which for all of us, the roughest. We gather at the stage and are presented with a 40 person choir. They were amazing, wish I could share what they sang. They move off stage revealing the Empty Table Ceremony. This gets me excited, as I presented this ceremony to the committee during the planning stage; and they loved it. I gathered crowd loved it too, judging by their silence afterwards. After a thoughtful silence, the word is given to begin lighting the luminaries and the start of my longest hour.

Here is also a marked difference from the virtual of that in the virtual Relay, you know where you placed every single luminaria. I real life, with advanced luminaria sales, these were placed alphabetically around the track, intermixed with those of the team campsite. With my 19 advanced placed luminaries, I knew I had a lot of wandering to do. The first one I find, is in honor of my dad, I lose it. After a bit, I gather myself up and continue my quest, with a vague remembrance of all the people on my list. The lighting process begins with 15 minutes to give everyone a chance to find and light theirs; afterwards everyone fans out to light the remaining. I managed to get to about half of mine and a good number of the dearest ones, on both online and real side on my life, before the torch was past, to lit them all. I remember feeling sadden I could not get to all of them and rejoiced someone was caringly tending to them. VR never had that.

Over the next long while, well beyond the remaining of the Luminaria hour, I so slowly walk along that inside edge of the track, going around and around the track, from a to z, a to z, a to z, luminaria bags so numerous, they are right next to each other, in an endless procession. They are all there. Mothers, fathers, wife, husband, sons, daughter, uncles, aunts and grandparents, colleagues, lifelong friends and those that touch our lives, but for a brief moment; and never leave.

Sigh of relief, I find all of mine carefully tended to, but not surprised, I haven’t seen an unlit one in quite some time. After about the third or fourth lap on the inside track, I realized I was one of a group of people, circling the track, doing the Luminaria shuffle. Silently advancing, bit by bit, reading and reading, the outpouring of love, all mindful of each other, while the walkers are pacing their laps further out. After a bit, I find myself on that divide between the Luminaria shuffle lane and the walkers coming at me, just looking at all their faces. Right there, I could see it in their eyes that quiet connection of the soul.

IMG_0105

After a good number of laps with the walkers, I now find myself resting in tent, now no longer needed for Relay, alone with my thoughts and the cold. My thought wandered all over my Relay experience, Second Life, InWorldz, committee, captain, support and countless levels of volunteers roles, virtual Relay, organic Relay, American Cancer Society, Canadian Cancer Society, my indoctrination into the Relay, the representation of the day cycle of a Relay event, from daylight of health, through the darkenss of cancer and it’s treatment into the dawn of a new day of remission.

Last night’s Relay, I got cold. Far colder than the weather man predicted. We even had a light rain for a little bit in the wee hours, to add to the misery, when I realize how the unpredictable nature of weather, is the perfect symbolism, for all the unknowns and unpredictable nature of a cancer treatment. I never would have gotten that in the virtual Relay either.

I defy the cold, wind and dampness, and walk some more.