Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, November 21, 2011

PS- I love you: Creating A Digital Farewell File


When I found out I was terminally ill, the idea of leaving behind a legacy weighed on me, but not as heavily as the idea that I could leave behind a child with little or no memories of me and the values I had dreamed of instilling in him. I’d dreamed of the advice I would give him through out his life.  I thought of the times I would sit and rub his back to comfort him and could not be there. The largest legacy on my mind was how I could still influence and love him even if something was to happen.

Luckily, the technology boom that has put a smart phone in just about every teenagers’ pocket has also equipped most families with a camera and video recorder that with some simple teaching is easy enough for the worst neophyte to create collages of memories.  Having a phone/camera/video recorder in one makes catching pictures or snippets of conversation anywhere easy, all pieces that can be a priceless part of the multimedia feel you may want your digital memory file to have.

Now, there was no need for me to buy the expensive, cute packaged books that didn’t quite convey what I wanted to say or that had no special sentimental meaning. I could videotape myself reading our special books: Alexander and The Horrible, Terrible, No-Good Very Bad Day, which my son insists was written especially for him, and The Little Train That Could.  Those stories were our favorites, and I was happy to have video that was a special part of our relationship, just like most people would want to do leaving their own legacy.

Very simple physically to start, far more difficult emotionally, I created a folder on my desktop marked “Just-in-case.”

Had I had a smart-phone at the time or very little energy, I may have created a free email account and sent everything I wanted to include there, from videos to emails and pictures, making sure to leave the account name and password to a loved one.

Instead, I launched into a multimedia legacy project. I created subfolder’s in the “Just in Case” folder for each individual I wanted to reach out to: my parents, my husband, my siblings, niece’s and nephews, best friends, and obviously, my son.

Email accounts also offer the option of creating folders for specific individuals or purposes, which can be filled as easily as clicking and dragging the message to the appropriate place.

By doing this, every time a picture is loaded onto the computer or something is written I could easily save it in the memory file, and it only took one external drive to back it up. In the future though, loading each individual’s memory file onto a thumb drive will be easy, and then they’ll have copies of our times together forever.

I had imagined typing each letter and putting it together for its recipient with a few important memories in a card nicely labeled with the occasion it was supposed to be opened on, and I didn’t limit myself to birthdays or holidays. I imagined every time I would want to be there that I may not: losing a big game/disappointments, the first crush, or when he simply felt all alone in the world like nobody understood.
I wrote these ideas with a lump in my throat, and still do. Thinking about this is difficult, coming to terms with everything you may miss is devastating.

This is why after creating my files, had they not been virtual, they would have sat collecting dust in the corner. I wasn’t ready emotionally to write them. If you are, that is wonderful. If you’re not, and I worried I wouldn’t be in time, I was lucky to find a friend in Carol Renzelmen, MS Ed.

Any friend, support person, counselor, or volunteer at the hospital could help, but I chose to work with a professional.

Having worked as a freelance writer for most of her adult career, Carol had recently  taken classes to volunteer at a local hospice to assist in the combining of her two talents of writing and nurturing into a much needed niche: writing farewell letters.

Carol, who you can find at wordsforalifetime.com, is on a mission to “promote healing and connections through the written word” by helping people leave a legacy of words allowing them to let go knowing that the words that matter most have been said.

She was the push I needed to actually begin my journey, helping me say the things I wanted to say but hadn’t been able to. In fact, she was able to have the clarity and perspective I couldn’t through my flood of emotions that gave me crazed, hysterical writer’s block. Even as a writer myself, putting the words in black and white was too difficult.

Her gentle tactic in assisting in writing our letters included sitting with me, drinking tea and talking about the good times, the great memories that made me laugh from thinking of them, as well as asking the hard questions like, “What’s the most important thing you want to say?”

I wanted X to know that I was always with him, that I loved him, that love transcends all and that I would always be with him. I wanted him to remember his priorities and their order: God, family, school, sports, hobbies. I also wanted him to have letters to comfort him during difficult times that I knew I would miss: the first big game loss, getting dumped, not making the team.

In fact, if I wasn’t a writer myself, I wouldn’t have needed to write anything. Carol could do it all for me.

This is the route I chose to take to remain in my child’s life after I was gone. The file is there. Even some memories and blank cards are mixed in, stored all together in one box, which my letter will direct him and my loved ones too just in case, but every person’s desire, vision, and memories are as different as the lives we have lived. It’s important to find what works for you and make it happen, even if it’s with a box, pens, papers, and envelops written in private with a box of tissues.

1 comment:

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