“Physical strength is measured by what we can carry; spiritual by what we can bear.” – Unknown
When I started this blog, it was partly my own very personal need to heal from my experience of moving from sheer terror to triumphant regaining of our life. Albeit a different life than the one we had, but in many ways, much richer. A common occurrence with those on the cancer journey.
Many, well meaning friends, felt I should “write a book”. I accepted this as a compliment and very real consideration. I had learned a lot. Was there someway I could give back and make it easier on those traveling the road in Myelomaville? It would help me and others. Seemed like a fairly worthwhile endeavor. But not being a writer and feeling the pitfalls of my ill-equipped experience with writing a book and getting it published, I just felt like it would take too long and people needed it NOW. I needed it NOW. So instead I journeyed into the blogosphere. Wanting immediate feedback and being able to be a lot more whimsical about what I wrote about. I have never regretted this decision. I have had more fun and met more amazing people as a result of this fledgling effort, that is now so much more than that for me.
Last night, Pat approached me about a series of things he was working on and asked me about writing a book. I won’t get into all the details, it was a very casual, but earnest conversation. The weird thing was, for me, there was no resistance. It was like, “yeah, I could probably do that… now.” Then as the support group I attended was sharing with me some of their feelings and needs, particularly the caregivers, I made a suggestion to them, rather off the cuff. Then it all came to me this morning like a lightbulb. I know EXACTLY what the book should entail and it’s format as well as actually being a useful tool for caregivers in a support group setting.
The coolest part, I need YOUR help. I will be wanting your participation. This won’t be a book exclusively by me. It will be all of you amazing and wonderful bloggers, Caring Bridge, Caring Pages, FBookers, and friends I have met on this journey who I think bring such amazing inspiration to me and others. We help each other to not feel alone, in the quiet of our homes, late at night, on the computer. There is a tangible connection we have come to feel toward one another and the relief that we all feel when someone tells a story, “OMG! That is how I felt!”
So expect to be hearing from me this year and let’s make this happen! I will need your permission to publish some of your writings and to credit you fully, or partially, depending on your preference. My hope is that it is a book that support groups can leaf through, select a post writing that resonates with them, read it, discuss it, learn from it and leave feeling enriched by it, the way we do in the quiet of our homes, alone. What do you think?
“… again, you can’t connect the dots looking forward, you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something, your gut, life, destiny, karma, whatever. Because believing that the dots will connect down the road will give you the confidence to follow your heart even when it leads off the well worn path, and that will make all the difference…” Steve Jobs, Standford Commencement Speech 2005
Paula, your family gathering sounds WONDERFUL! I know you enjoyed every single moment of it. I enjoyed reading about it!
Lori–wonderful. So excited. You are so right-on. Even as an MM patient I’m looking for the tangible connection so I can find relief, so I can cry and laugh and touch the intangible parts.
After our return from Little Rock on Dec 1st, we decided to throw a big family party a few days before Christmas at our home for the 9-grandchildren (primarily) and our 4-children. The theme was a gift exchange between the grandchildren with emphasis on making cookies and ginger bread houses. Everyone is so busy during the year, we just wanted a gathering with our family to celebrate our blessings. Our grandchildren range in age from 20 to 2–7-boys and 2-girls. Our 20 year old just left an Air Force tech school, and brought his girlfriend. Our home was full again—full of happiness and joy. What started as a family gathering grew rapidly; other kids calling for a place to hang out. Gathering around the outdoor fire pit and roasting marshmellows was one of the high points. The ginger bread house constuction team was hilarious…what detail from the guys, what delicacy from the girls. So different in nature these wonderful human beings are–young, old, men, women, boys, girls… As the evening ended, the connection was made and that made all the difference. Whatever was expected or not–the evening was successful because they connected.
My connection to the MMville is very important. Just visualize this place, this book…my children and grandchildren…how wonderful. Ready to ride the wave with all of you…thanks Lori
lori, you can do it! you have so much to offer, and just look at the number of the visits to your site! amazing! and i know your intellect, your inherrent desire to teach (which really means to SHARE knowledge), to articulate complex medical issues and filter them down to a personal level, and with the incredible base of patients, their caregivers, and your’s and dave’s odyssey – a wonderful wealth of a plethora of subject matter that people would really value reading about, to say nothing of your being a fine wordsmith, a diligent advocate, and a good instinct of feeling when we could all use a little comic relief. oops – i think i just wrote a run-on, non sentence – but it’s just my excitement bubbling over. i know you get it. keep that fire burning, and if at some times it seems overwhelming, just look back at all you have accomplished. hugs of encouragement and pride in you – karen
I think that it would be a wonderful thing! I believe that everyone has a story to tell and pulling that together can be a beautiful work.
Thank you ladies. It feels like the right time. My plan is to have blog posts from folks, and other types of correspondence and contribution, that are such that they can be used for conversation in the support group setting. To get the dialog going. Versus a cancer book you sit down and read that is all about me and Dave. Of course you can sit down and read it, but I think it would be really wonderful for a support group to pull a topic out of the book at each of their meetings, like how to tell your children, and get a conversation going. Agreeing or disagreeing, but working it through for each of them with their own unique set of skills and circumstances. Empowering and enlightening the caregiver and therefore patient to get through this hurricane as best they can. The benefits of all those who have gone before us and learning from them what works. One writer friend I spoke to about it yesterday said it would be like “chicken soup for the caregiver’s soul.” Chock full of personal stories. I will keep the title Riding the Wave, but you get the idea. Something useful!
Lori, yes you definitely need to write the book. We all know just how scary this can be, and it’s comforting to know others have been there – done that – and need support and guidance. I, for one, would not have made it through Rex’s diagnosis and treatments the last 2 years without your help (through your web site and postings on Myeloma Beacon) and the help of all the others on the Beacon. Knowledge is power and we need all we can get. So…”you go girl”…and we’ll all pitch in to help. Merry Christmas to you and your family! Fondly, Kay
Lori…..You will do a GREAT job!!!!! 🙂
And just last night….while on FB late….I thought isn’t it strange that all of us caretakers are up so late. 🙂