"The two offices of memory are collection and distribution." ~ Samuel Johnson
As people grow older, their thoughts often turn to philosophical questions of life, death and the nature of human existence and experience. Many examine their lives, wondering about the significance of their accomplishments and their value to others. Often, these musings fuel an overwhelming desire to tie up loose ends and, more importantly, to make a mark that will endure long into the future.
An ALS diagnosis can accelerate this urge to cull through memories and somehow fashion the best, most important of them into an organized collection.
Through traditional means such as journals, photo albums and scrapbooks, and through more modern methods — audio and video recordings, Weblogs (blogs) and Web sites — people with ALS have gathered their memories and bound them together with an assortment of tape, glue and server space, to be shared and passed on to family, friends and others.
From the self-described “geek” to the technologically challenged, there’s a memory-collecting method out there for everyone. Here’s some advice from those who know.
Sticking with tradition: journals, scrapbooks, etc.
|Darlene Bates feels "a sense of accomplishment" knowing her history and her memories will be passed on to her family.
Journals and handwritten letters, photo albums and scrapbooks, drawings, paintings — even poems — can house the memories of the one who creates them. There’s something cathartic in the experience of pouring one’s soul into these sorts of projects.
Darlene Bates, 59, of Edmond, Okla., is putting together a series of scrapbooks to illustrate her family’s history. The first is nearly finished and covers her great-grandparents in the late 1800s through 1974.
“I’m making it for my girls,” she says, adding that she hopes her adult daughters receive “joy and satisfaction” from the gift of memories she’s passing on.
Having lost the use of her arms and hands to ALS, Bates relies on daughters Jane Boyd, also of Edmond, Okla., and Susan Boston of Unionville, Va., to help work on the books. She relates the names, dates and other important information as they tape photos to pages and annotate the details.
Bates offers the following tips: “Get started! Buy lots of supplies. Find someplace to work on it where you can leave it out — that way you don’t spend a lot of time getting ready every time you want to work on it.”
Also into scrapbooking is Tammy Brown, 35, of Thida, Ark., who learned she had ALS in December 2004.
|“I have a video for each one of my children so they can hear my voice when they are missing me in the future,” Tammy Brown says. “They will be able to hear me say, ‘I love you.’”
“I got to thinking about leaving things for my family when I pass away so that they can remember me when I’m gone,” Brown says. “I want my children to remember all of the time our family spent together and all of our favorite memories.”
Brown has made four scrapbooks for her 12-year-old daughter, Lauren, and four for her son, Logan, 9. She and her children also are putting together a book specifically dedicated to their family’s journey with ALS, with mementos from walk-a-thons and fundraisers, articles they’ve written for their local newspaper and notes from family members.
Brown also has written journals to her children, telling them stories about things they did, and has made several videotapes as well.
“I’m not sure how long I’ll have to tell them,” she says, “so I try to do different things.”
Brown also advises starting early, before the disease progresses too far.
“Use your own handwriting in a journal while you still can,” she notes, “so your loved ones can have a part of you no matter what happens.”
Modern media: blogs, videos, etc.
|The Web site includes pictures, videos, ALS resources and two blogs - one written by Sonia Victorio and the other by her son and caregiver Daryll Victorio - all incorporating a unified theme.
The Internet, blogs (online journals) and Web sites can act as the repository and viewing medium for memory collection and storage. Audio and video recordings and digital photo collections also can be posted and hosted on the Web.
Sonia Victorio, 56, of Grayson, Ga., and her son and caregiver Daryll together keep up blogs and a Web site, where friends, family and strangers can read their thoughts about Sonia’s battle with ALS.
Daryll designed and manages the Web site, which hosts the blogs (updated once or twice a month), information and updates about Sonia, links to ALS resources and a “So You Say” forum where anyone can share their ALS story.
“I’m not trying to memorialize my mom,” Daryll says. “But at the same time, I want what is written to last so that people who knew her can remember her through what I write.”
Both Sonia and Daryll recommend trying out blogging on one of the free blog-hosting Web sites such as Blogger (www.blogger.com) or WordPress (wordpress.com).
“These are highly customizable and easy to use,” Daryll says. “Also, read through some blogs to get a feel for the style and medium, especially if you’re at all worried about your skills as a writer.”
Scott Stafne of Woodbury, Minn., also a blogger, says he started jotting down his thoughts online shortly after learning he had ALS in 2004, “primarily to put my voice ‘out there’ while I still could.”
Stafne, 35, also keeps a journal, and he and his wife, Kirsten, have several photo albums on DVD, print, and online, as well as a Web site (http://stafnes.com).
“It’s a great way to share my experience with other people,” Scott says. “We intend to keep all of it for our children [Eva, 2, and a baby girl due in March] to look at and read in the future.”
Although Kirsten designed their Web site from scratch, Scott notes there are various tools available for setting up Web sites and blogs easily and at minimal cost. Sites such as Webs (www.webs.com) and Bravenet (www.bravenet.com) offer free Web hosting as well as the tools (html codes for adding message forums, links, polls and templates, for example) and tutorials to create and customize your own Web site.
|Scott Stafne says sharing his life experiences through his blog and Web site helps him come to terms with the “practical and philosophical aspects of not only living with a fatal illness, but finding peace with both living and dying.”
Another of Scott’s projects is the video “Legacy,” made from clips taken from the more than 100 tapes of his life that he’s shot since his diagnosis. The project is posted online at Google Video, and can be easily accessed by clicking a link on the Stafnes’ Web site. “Legacy” was shown at a fundraiser screening of the documentary film “So Much So Fast” (about Stephen Heywood and the ALS Therapy Development Institute) last May in Minneapolis.
“First and foremost, I’m doing this for our children, so they’ll have a sense of who their dad is and what life was like before they remembered it,” Scott says. “But I certainly want to communicate and share with family and friends and other ALS patients, as well as raise awareness about ALS and living with a fatal illness for a greater community of readers.
“There’s just a need that I have to feel like I’ve contributed something positive, yet honest, to the world before I die. I also do it because it helps me to process my emotions and learn from my experiences.”
Scott says that in this day and age, it’s only getting easier to preserve memories and document one’s life. He recommends that everyone consider doing some sort of legacy project, whether they’re dealing with a fatal illness or not.
“Even if you can’t speak, you still have a voice,” he says. “My advice would be to find an avenue that you’re passionate about and comfortable with and not put too much pressure on yourself, and have fun with it — better to have something to share than nothing at all.”