“If you understood the extraordinary gifts that every single challenge in your life makes possible, even inevitable, you’d celebrate your challenges, new and old alike, as the omens that they are of new beginnings and spectacular change.” –
Notes from the Universe (Mike Dooley, www.tut.com)
One of my favorite “feel good teachers,” Mike Dooley, sends me messages called Notes from the Universe. He pretends to be the Universe and sends little encouraging and sometimes deeply thoughtful messages that help me to ponder my life. This one actually comes from a revolving calendar my friend Paula got for me.
If I had seen this while we were in the throes of our diagnosis and treatment, pain and dealing with all manner of things, I probably would have sniffed, rolled my eyes and said, “Yeah right! Son of a $#!*%!!!” (Yes, I confess. I can cuss with the best of them and make grown men blush. It’s not one of my more admiring features. Dave hates it and my father would turn over in his grave! But it sure feels good.)
Now, that we are quite beyond all the upheaval experienced in the latter half of 2008, I say, “emmmm, yeah, I can see that.”
Dave and I feel as though we have experienced many gifts through this experience and have garnered a bit of the secret of life.
Having said that, however, the difference in how I would have felt getting this early on vs. now, is important to note.
I hope it reminds you that when you are talking to those who are newly on this journey, you are sensitive to the tremendous stress, anxiety, fear, etc., they are experiencing and not go spouting off all manner of philosophical viewpoints that is just not their reality at the moment – understandably.
For me now, and many of you, who have been trekking through Myelomaville for some time, you know what I’m talking about.
For those of you newly on this Myeloma road, I pray with all my heart that you successfully negotiate your treatment, come out the other side and find yourself looking at all the wonderful people you have met along the way and perhaps you will be able to arrive where your viewpoint of life includes many extraordinary gifts.
Aaronnnnnnn! I remember you well! So good to hear from you. And I couldn’t agree with you more. I miss my Myeloma Buddies and enjoy going back to Arkansas every 6 months. When we did it for the first time. I suggested to Dave that we make it different and fun compared to the times we were in treatment, like a lovely weekend getaway. We have and it has been rather enjoyable. And running into folks we know and remember and then meeting new folks is truly a highlight.
I’m glad you have re-connected Aaron. As you know, we meet many along the way and when we lose track of them we wonder… Hugs to Stacy and your “good looking” brother.
Hi Lori, great post. You can count yourself and Dave as two of the great “warriors” I have met along my jouney. I believe I heard the term “warriors” from your fellow blogger Nick. When your in Little Rock everyday for weeks at a time you can’t wait to leave. Now I can’t wait to go back. If I am lucky I will run into several of the people I have met along the way as well as meet new people. I feel lucky to have met many courageous fighters of this disease. Including the doctors, nurses and staff whom are both passionate and caring. Lately I have met several newly diagnosed patients. I am careful about what I say. However, at times when I here somebody not wanting to leave home for treatment or are worried about this or that, I want to shout, “Myeloma is a deadly disease. You need to do everything you can to fight back. The most important thing is your health. You can win!”. I think this comes from my many years of being around coaches. Certainly, the worries patients go through are important and each of us fight the disease in our own ways. For me the decision was easy. I have a 4yr old. I figured at the time that any short-term hardships would be worth the additional time I would get to spend with my family. Of course I could not have done this without my caregivers, family, friends and co-workers.
I am not good with names. Chalk it up to lost brain cells. If you don’t remember me, we first met in the MIC and later at the blood draw area on a return check-up. I was 35 at the time. I have a great spouse whose name is Stacy and a twin brother. Best wishes, Aaron.
lori, this is such an important issue to be considered. we cg’s get to meet so many other MMer’s along the way, and are eager to extend a hand, an ear, kindness and understanding. but you are so right. we have got to be aware of where THEY are at, how overwhelmed they are, and sometimes recognize the value in one’s finding ones own way. also, we have to go back to those horrific hours and days when we had the bomb dropped on us – that life changed forever, in a heartbeat, and that we began a grieving process for that and what it included – other multiple losses, painful, personal, and unique to each of us. we wouldn’t want to intrude on that, and yet, being where we are now, we are capable of fine-tuned listening, offering suppot, and just letting them know we are here for them. gentle and tender mercies are sometimes what’s most needed. thank you so much for such an enlightening and sensitive post. never doubt yourself! your heart is in the very right place! warm hugs, karen
We do learn so much about ourselves in the face of great adversity. So much of our character is “tested” during these times. Long held belief systems often experience great change as we are faced with such harsh realities. I have grown, for the better, without a doubt.
“Myelomaville” is a Sean Murray phrasing, which I’m sure will not surprise you in the least. He is so gifted with his words. I used to credit him every time I used it, but I find I’m using it so much now, I should probably just put it in the footer of my blog! haha
Oh gosh yes Lori how right you are – great view point. Looking back now on the dreadfully scary fear filled early days of MM and the total panic I felt at all that had to be learnt to help H in the best possible way. Remembering too all the changes that I knew would have to come to our rather perfect life.
Although in many ways I am still a child at heart, myelomaville ( and I love that term ) has of course brought the greatest sadness to my life but it has in so many ways enriched it also.
It has shown that I can be the ‘adult’, completely changing roles. Helping me to understand so much more about LIFE, showing me that I could manage to be strong when really needed. MM also taught me about compassion and love of my fellow man. It showed me clearly who my special and much loved friends are (such a gift), it brought new and wonderfully caring people into my life and perhaps has given me some gifts that I can use to help others. Blessings dear one x
So well articulated Sandy! Thanks.
This is definitely a post for the peeps who are down the road a bit as going through the dark forest of MM initially is like waking up in a dark room with the scariest thing you can imagine standing at the end of your bed and not being able to find the lights… your posts are like little flashlights along the path to be picked up to guide MM’ers through these scary woods.
Yep! I can relate 🙂 Great post!
Thank you Sarah! You know after all this time, I still get a little insecure about some of my postings, wondering if others agree or think I’m completely nuts! It’s always nice to hear when another caregiver can “relate”. Thanks! I’m enjoying your RV escapades by the way. So jealous. Love to travel around and see cool places, camp and meet new folks.
Lori: You are so right! If there is anything “good” about MM….it has to lie within the fact that it really does make one look at things, people, life, etc. differently.
There definitely is anxiety, fear, stress…….but it is what it is….and we learn to handle it.
Another great topic, as usual!!
Hugs