Northern Lights: Preserving The Past For The Future
In my new life five years following my myeloma diagnosis, I am still coming to grips with what it means to me to have a cancer that could flare up again at any time.
The fact that I have my blood tested for myeloma markers every three months, and meet with my oncologist shortly thereafter to go over the results of these tests, tells me that this is not just idle speculation.
While I try to just relax and enjoy life at a steady pace, sometimes my worries get the better of me. ‘What if I get really sick again and am thrown back into intensive chemotherapy? What if I can no longer have a normal life due to bone breakage and pain? What if, what if ... ?’
I try not to dwell on the future, since of course it is an unknown. I don’t believe in ‘borrowing trouble,’ but I realize that with myeloma, one could realistically expect that additional medical interventions may be needed. And, of course, nobody knows when that might be!
So I am in the habit now of going in three-month planning stages. If I am well as shown by the test results, I breathe a big sigh of relief and plan the next three months as far as travel, commitments, volunteering, and anything else in my life that involves planning.
One of the things on my planning wish list is to leave my family’s history in order for the next generation and any other family members who might be interested. I have several boxes of photos, memoirs, and genealogical ‘trees’ that stretch back almost 200 years. Somehow I became the recipient of much of this material because I have always been interested in history.
A couple of decades ago, I started preserving some of the material by photocopying and getting prints made at a shop that specialized in historical photos.
Nowadays, however, with our amazing computers, it’s quite simple to scan photos, save them as digital files, and send them as attachments.
So one of my summer projects has been to start scanning the historical photos and sending them out to the family members who are interested in them. When one comes across such items as a studio photo, dated 1860, of one’s great great grandfather, or a snapshot dated 1919 of a teacher in Alaska with a team of well-fed sled dogs, of course it’s interesting!
I have a picture of my maternal grandmother serving as a nursing sister in Malta in 1916, in a hospital tent with her ‘boys’ (injured soldiers). My great grandparents from another branch of the family tree were lighthouse keepers at Point Clarke, Ontario, on Lake Huron, in the 1890’s. My husband, children, and I visited there when the children were younger. The lighthouse is now an historic site with a small museum. That certainly brought some family history to life for us.
Last year’s severe flooding in our area, and reports on the news of people being evacuated from areas due to forest fires, made me aware of how easily paper copies of our past can be lost. Old files can also be lost through the passage of time. Photos fade and sometimes are barely legible after a hundred years of storage.
All these facts convinced me that making digital copies of our records would be a really good idea. And who knows, it may also stimulate other family members to do some writing and reading about the life and times of our forebears. That’s what they would have wanted, I think – just to be remembered by their children and grandchildren, and by future generations.
I had procrastinated on doing anything with my boxes of family history for many years, because I was really busy with daily life. Then, when I was first diagnosed and being treated for myeloma, the last thing on my mind was to sort through old files. I had enough to do just to stay on top of what I really needed to get done.
Having myeloma has nevertheless been a ‘wake-up call’ for me to tackle this project, because I consider it important to preserve at least photos and important dates of my family history. My parents, who both live in the area, and others in my extended family can still help me gather the necessary information.
Now seems the right time to sort out my ‘family tree’ files. I am relatively healthy and have the energy, both mentally and physically, to go through my boxes of family history. If I get sick again, all bets are off, since I just don't know how I will feel. I am not anticipating any huge changes in my health, but, as I mentioned earlier, no one ever knows what the future may bring.
And finally, I somehow find it comforting to look at all the pictures and writings of my ancestors and think about what their lives were like.
I hope that future generations will feel the same way.
Is anyone else putting their historical house in order? Do you have any suggestions as to how best to do this?
───────────────── ♦ ─────────────────
The quotation for this month is from Ellen Goodman (born 1941), an American journalist and syndicated columnist, who said: “This packrat has learned that what the next generation will value most is not what we owned, but the evidence of who we were and the tales of how we loved. In the end, it's the family stories that are worth the storage.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at.
Wow Nancy! Another great piece. You are such an inspiration.
My kids thought I to be completely "Batty" in 2013---to have put together a fairly complete lineage chart, going back to 1850's ( Irish Potato Famines; Land Grab in Germany; French Revolutionary in America 1773; etc) ; a detailed history of primary ancestors and their countries; Photos ad nauseum-- that were scanned and placed on CD's and Thumb Drives; Pictures ( ie. if I only had a photo-copy that were scanned, enhanced , printed and then copied (w/ Photo paper)), etc, etc....and long narratives about "the funnier side" of the family and certain things, some would prefer that stayed ....."forgotten".
I am not a kind revisionist Historian, btw. LOL!
Medical History--as complete as I could.
Up to the 1930's--cancer and lung diseases were often called Consumption, Wasting disease, etc. Heart Attacks and Strokes tended to be lumped together. Diabetes was poorly understood. "Senility" caught any and all "abnormal Mental Status after age 50".
The dead body was too sacred to even ask--"Whut Killt Him ?"
Didn't need HIPAA until much later--as people weren't concerned with Genetics and medical history, until the 70's , it seems.
And I finished my complete Obituary ( sans Date) and Instructions for funeral(Humorous), burial ( Burn me-please!), dump me where you whilst, and the completed financial and Trust Instruments for the kids....and the Will.
My kids really thought I had lost it.
I'm sure my erstwhile Historical efforts ( except Trust and Wlll) will reside safely in the bottom of a box, stashed in a basement somewhere, asleep for years, like Rip Van Winkle.
I , Like you, decided to just--"Do it" ....and then push as hard as I can, on this "Living thing"...until I drop.
So far, so good.
My 3 month labs are next Month...
So it goes.
Hi Nancy, My sister is the historical "nut" and has done most of research on our family's history. I have however had the "wake up call" for other things in my life. While you (if we were in the same time zone
) are scanning and researching, I will be designing recipes, making them, tasting them ;), photographing them and then typing them into my website. Unfortunately, today is not a baking and tasting day but a day for typing.
Take care and all the best for the next blood test.
What a great approach to life, Nancy! After each 3 month follow up, play, plan, participate! Far better than all that waiting, watching and worrying! I really enjoy reading your very uplifting columns, thanks so much.
Thanks for the nice comments all!
Shanthi, you are such a great sister-in-law, and I have your side of the family too to record the history of somehow. Even when Dilip and I compare our childhoods, in Canada and in India, there are a lot of similarities and yet quite a few differences too. We both grew up in the 1950's, which also means that those were different times than now. I guess every generation is different though and has it's own characteristics.
'R' your imagination is great, but hopefully you don't give in to too much worry. I think it's neat that you did such a thorough job on recording and preserving the historical records in your family. I am sure that your children will appreciate that one day! One thing about that is, if any of us or others are reading up on history in an area, if there is some connection to it through family history, that can make it more real!
Libby, you have a lot of talent, both in cooking and in publishing. Look forward to reading your recipes!
Thanks Kathryn. I really do enjoy life most of the time! I hope you also do, and thanks for reading!
I have been doing some of this – scanning photos, making notes. Our family history is scattered and no one in this or the generation above this one (almost entirely gone) have done any sort of decent job keeping notes on these things.
The other thing I find myself doing is purging personal items. I have a later-in-life marriage and there are adult children on both sides. With the myeloma in me, I am probably going to die first. My dear husband is the kind who hangs on to everything, and I mean everything. I envision my sons saying to him "yeah, we want that and that, but not that box of 'stuff' mom left." Warren would never be able to get rid of any "stuff" I left at my death that my sons did not take.
I like my stepchildren, but I don't want them (a) stuck with my stuff – because they will have enough of their dad's stuff to deal with – and (b) going through my stuff and pitching it. So I have pitched a lot (grade school report cards – mine from 50+ years ago – for example) and getting my personal mementos down to what I feel are the really important items to pass on.
Getting our house in order – a constant theme! Great column!
Thanks April, I have to go through 'stuff' and give away or throw away a lot too. If I buy something new, I give away one or more items (this works with clothing). I am getting our family records in order, since I enjoy working with them, but also so that they are more organized too.
Many of our friends have 'downsized' or moved out of Calgary. Moving costs are so expensive that many people do 'purge' a lot, including furniture. In case we were to move, I wouldn't want to be spending a lot of time sorting stuff out then, so am trying to get organized now. It's an ongoing process though, and I just do a closet at a time, or a cupboard. (I hope not to move though, since we enjoy our house and garden here. But it makes life easier not to have too much extra stuff stored.)
Nancy,
Great article. I am the historian in my family and I managed to inherit all the photos from my grandparents and parents. I have a family tree program on my computer so I could pick out the relevant items for different family members and put on a flash drive. I also scanned a lot of the photos (didn't want them to think it was overload). I put them in files by families on the computer and the flash drives. I gave a flash drive to each of my children, their children (except the little ones) and my cousins. I also made a "family health tree" with all the information I was aware of for my kids and their kids. You know how the doctors want to know that information. For me this made me feel better. If my relatives never look at the information, so what. It is their loss not to know something about their family.
You are also right that we never know what my happen in the future - especially with our myeloma.
Thanks Joyce, and it's good to know how you have handled the family tree photos and information. I am sure that your adult children will appreciate the work you put into the project, and it will give the grandchildren some interesting information about their heritage too!
I haven't gotten a computer family tree program yet, but I can see that would help to organize everybody. Also, on talking with friends about this project, we wondered what will happen when our computers, CD's and Flash drives go obsolete! Remembering the earlier days of home computers when we used 'floppy disks' I could see that happening too.
SO, would you then take the computer items and print them back into a self published book of some sort? Or would you rely on the fact that you have at least distributed the computer material to others, and so it isn't just in one person's collection anymore, and is at least digitalized?
Nancy, I really enjoyed your article ... it sounded so much like me. I thought I was the only one! For years and years I have collected my family history, hoping to find some glimmer of interest in one of my sons or grandchildren. Lots of cousins have contacted me from time to time and I even got connected from three far distant cousins via an online genealogy site. Once I got over my initial caution about communicating with strangers over the Internet, I found them to be extremely helpful and willing to fill in many gaps in the info I gathered to date. Several of the family go back into the 1500s!
I must admit that taking my Revlimid, dex and Zometa allows me to burn the midnight hours more productively. It also brings to life many, many memories from my childhood, filled with far more interesting and accomplished people than I realized. What a blessing. It also reminds me that everyone will come to the end of their life in different ways ... some easy and some not so much. Don't know where I will fall on that scale, but it doesn't really matter ... it is what it is.
I've been in remission since January, still taking my same medical regimen. If it keeps me going, then that's ok. I just have to wait and see. In the meantime, I feel so lucky to have found the Beacon and read as many of the articles as I can. I turn 70 in two weeks. Don't know how long the remission will last, but I'm hopeful for more time to continue my research and find more family members. Thank heavens for the computer and Internet ... for many, many reasons! And you, my friends!
Thanks Sue, you are a real historian! We all have this heritage from our families, and I do think its interesting to study it. At least I can do this as a hobby, since am really busy in the present day world too. That must be how people become novelists of historical fiction I think ... just mulling over bye gone days (?).
I am part of a quite spread out family too, and there are people who are really interested in the family tree on both sides. So I can reach out to them too for information.
Nice to hear that you found that taking Revlimid did not interfere with you working away on projects like this. I sort of dread having to go back on drugs (if I do have to) but you seem to be doing alright with that. Happy Birthday to you! Have a great year too.
Nancy,
I know what you mean about technology changing and making some of it obsolete. Another thing you can do with your information is post it on the web at one of the genealogy-related websites. As long as computer programs are accessible, it will be available regardless of cds, flash drives, etc. The sites also have a lot of records you can search. Unfortunately, they are typically not free.
Hi again Joyce! I did look into one of the sites yesterday and found they had a six month trial. I was able though to put in a few details about my grandparents on my Dad's side, and they were already registered! It wasn't just that I had put in their names, for their middle names, date and place of birth etc. were in there. I think I know which cousin of mine had already entered that info ... surprisingly he is about the youngest of a dozen or so cousins and siblings on that side. (The parents of us baby boomers had larger families in the '50s and '60s). We were going thru some family history photos when he visited here from Vancouver last month. He had never met some of the elders who I did meet in my childhood, but finds it interesting. He had never even met our mutual grandmother! He is more than 20 years my junior, so to me it shows that the history is important to preserve since some others really are interested in it.
I will probably join the site later, since right now I am really busy with a family wedding in mid September!! Am scanning photos from my daughter's childhood for a 'power point' presentation. And then just got an invitation to an 80th party for the professor at the U. of Calgary, where my husband and I met. So more photos to scan for their power point presentation, this time from the 1970's. So glad I have the computer equipment to do this sort of thing.
Nancy, your concern about preserving family records if computer technology goes obsolete is well-founded. I really like the idea of publishing a few books with your genealogy in it. With the photos you have and since you are scanning them, you could easily do a book on your iPhoto. I am thinking that one of the original family trees done for a family reunion of ours in the 1990s rapidly became unusable as it was on a floppy disc (fortunately, there is a converter from floppy into more recent hard drives). So you might consider doing a book or two with the best photos of everyone in it. I did this with 50-year-old slides my brother took when we were kids!
I would not rely on posting it on one of the genealogy websites. One of the major ones is closing down at the end of September so everyone has to get their stuff off of it. I would have an extra paper copy of the genealogy itself tucked into a safety deposit box. As children grow older, they start becoming more interested in this.
I really liked your article. It is great to get these things organized.
Sometimes I tell myself that it is better not to read articles and comments on the Beacon, because I get even more scared and worried. But some other times I feel that there is more understanding between two people with the same disease than between two close relatives.
In the first five paragraphs of your column, Nancy, you express very well the way I feel. And just as I suspected, even if my remission should last a long time, those feelings would not change. So not only one could realistically expect that additional medical interventions ‘may be needed’, as you say, but one's life is already changed for good due to the worry. Sharing thoughts with you helps though.
On the Beacon I can be myself. Here, there is no need to pretend everything is fine. Reading your columns is like taking off tight shoes, it is a relief to know that other people, very nice people, understand you and you understand them.
So thank you Nancy, I showed your article to my husband, who also said that you write well, and I made a deeper connection with him in this way.
Thanks Ann and Annamaria for your comments.
Ann is my neighbour and thankfully has been my friend for decades. We have worked on a committee together that brought out two published books about Edworthy Park, which is in an area of the Bow River valley that borders our neighbourhood. One of them 'Early Days in Edworthy Park' was a history, and in that book are photos from the Glenbow Museum here for illustrations, plus photos from private collections of families who first homesteaded in this area! I had almost forgotten about the historical book, but that's another reason to store historic photos and record histories...in case someone wants to use them in a book! We received funding to publish the history booklet (only 32 pages) from a grant from the City of Calgary Centennial project (1894 - 1994).
Ann, sage advice as usual! I hopefully will do some family history books too, as time permits. Ordinary people having been taking pictures for over a century now, and there are those neat family photo albums. People a century ago didn't take as many photos as we do now though! Maybe we should be grateful for that, since many of them have been preserved as there weren't too many of them to store. Don't you love those old photo albums with the mucilage 'photo corners' and people writing comments in pencil crayon?
Annamaria, sometimes reading about the worst problems of myeloma and about personal tragedies too gets to be too much for me too. Then I have to remember that we are all in a big international 'think tank' here and many people are helped by reading the Beacon, in practical and emotional ways too! I just strive to keep a balance in life and count my blessings. There is an old saying that is in a picture at my Mom's (another antique artifact from previous days) that I like to look at:
'Look to this day, for yesterday is but a memory, and tomorrow is but a dream ...'
So I guess we all contribute what we can, but have to stay focused on our every day lives too. Glad you and your husband liked my column ... that's encouragement for me to keep on writing!
Good luck with your family history projects. My sisters have done quite a lot of research and organizing, but there is SO much more to do. I have possession of most of the old family pictures and possessions and feel so overwhelmed every time I think about trying to organize. I need a family reunion with my 3 sisters so we can all work on it together!
Also, I am two years out from my diagnosis and doing well. I also try not to dwell on the future, but remain realistic about what it may bring.
Thanks Elizabeth. I just take these sorts of projects a bit at a time since have a lot on my plate sometimes too. Just getting through the treatments and recovering from injuries took most of my energies at the start of the MM journey.
I started by scanning some old photos on my mothers' side and have yet to do the other side or my husbands' side. I saved them into a 'picture' file and then shared them out as 'attachments'. I did try to organize the records more neatly so that anyone else who is interested could get involved with this project too. In my case I have a lot of the old photos etc. and literally wanted to share them digitally so that my siblings would have the same collection. It's just now that I have somewhat better computer skills and can do this, actually.
I also see this as a way of getting the oral history from the family that might be of interest to the younger ones in the family. My grandparents were of course the great grandparents of my children and my nephews, and they never met them, so I think that they would appreciate us making some notes about them. But, hopefully I will have time in the future to work on this too. Maybe it would be a good winter project too.
I hope that you continue to do really well. Having myeloma is one of those ongoing situations where one does worry, but lots of new treatments are being developed that may help us in the future!
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page