Sunrise? Sunset?
“Superman’s not brave. You can’t be brave if you’re indestructible. It’s every day people, like you and me, that are brave knowing we could easily be defeated but still continue forward.” – Unknown
In my last post regarding Dave’s exercise update I mentioned that our trainer is encouraging Dave to revitalize and renew his love for coaching pitching. Dave’s hesitation and his concerns.
Kevin, who writes for the Myeloma Beacon regularly, appropriately addressed the shared struggle and anxiety of reaching back into our former life, it’s obligations and responsibilities. I think this all ties in with the “New Normal” post I wrote about recently. It’s one of the things that I admit, I hate the most about cancer or catastrophic events that strip us of everything.
The good part is that we get rid of stuff in our life we probably should have gotten rid of a long time ago. And sometimes that includes people. The bad part is that we are also stripped of the things (and sometimes people) that we truly love. Add to that, that it was something we weren’t controlling, it was done for us, or to us, depending on your point of view. For those of us with “control” issues, this can be particularly rough. So now that we are bare and we are through treatment, hopefully we have achieved some level of remission/response, and we are fighting to feel better – we begin to pick up pieces of our life.
What pieces do we pick up and when?
The photo reminded me of one that my grandfather Otis won a First Place Ribbon for in his camera club years ago. It was supposed to be a competition in Sunsets. He captured a beautiful Sunrise. He was encouraged to enter and always hated that he won because it wasn’t a sunset but a sunrise masquerading as a sunset!!! He was a noble man of high integrity and he never enjoyed his ribbon. He tried to give it back when he received it and his co-competitors refused.
Well then I was thinking… am I in a sunrise or a sunset with regards to our life and what we are doing now in the aftermath of that turn your life upside down, on it’s head, twisted, and stomped on day, when Dave went into the hospital and we learned of his condition?
I think it’s worth discussing. I was happy to see Kevin bring it up because it is exactly the sort of thing we seem to all deal with. That commonality that we all share in our day to day life even though we are different ages and conditions with our disease.
Another patient friend of mine and I were discussing her first vacation and I discussed ours. How scared we were to venture far away from home, our doctors, etc. This is not a small thing!!!! I remember Dave being afraid to fly home away from Arkansas. And to make matters worse, he flew alone and I drove the car 2,220 miles home!
Another patient friend is worried about going home after her treatment because she is alone. Two of us locally have offered for her to stay with us and 24/7 phone support. It’s monumental.
Then, what about picking up other pieces of your life that you loved and you miss? It’s your call, of course. But nudging and pushing yourself thoughtfully and reasonably is probably worth your while. You can also change your mind! Imagine that!
The funny thing is, it isn’t just the patient who deals with this. The caregiver does as well. My one and only job was to take care of Dave. When I lost that job, (happily) I had a lot of post trauma. I was so focused on saving his life, driven, single minded, that I too was stripped bare and gave up all the same sort of things, good and bad. When I came up for air, I also found myself very hesitant to commit to anything, long term. In the beginning, I couldn’t even commit to lunch!!!! Seriously. It was always, “I’d love to come, but if Dave needs me I will have to cancel, I hope you understand.” There were several events and gatherings that I desperately wanted to attend and I had to struggle with my resentment that at the last minute, all dressed and ready to roll, Dave informs me he’s not feeling well. Shoulders slumped, face drooped, nasty, irritating curses restrained and absorbed, phone call and regrets made, I stayed with my man. It is what it is.
I will tell you that everyone who knew me understood. They were absolutely fantastic in their support with my constant “no’s” and “regrets”, along with last minute cancellations. I asked them often to please keep asking, I loved that they asked. They never stopped and slowly but surely I was able to begin to make a few adventures back out into Life.
Even after all this time though, I still hesitate and hold myself back. I reach for short, inconsequential things that it won’t matter if I have to bail. And believe it or not, I find a great deal of satisfaction out of my drive by, drop in, down and dirty, assistance to others, or just plain socializing, with no expectation or commitment. I used to be “The ________” this or that (fill in the blank). I had valuable and appreciated positions in the community that others relied on me for, for many years. It felt good to be the go to person on these matters. I don’t anymore. It’s OK. I help those that do, only in those things that are most important to me.
This struggle that Dave was having about resurrecting his coaching was completely understandable. As his partner, of course I got totally excited and wanted him to move forward. So did our daughter and our son. I quickly realized that while it meant something profoundly wonderful for us, it meant something altogether different for Dave and he was not sure. It’s absolutely OK. He’s not sitting around feeling sorry for himself about what he can’t do. But if he does move toward this, I hope he finds that he still enjoys it and feels good about making the difference in the life of young people and help them to achieve their dreams and goals in the shared love of baseball. I told him if he found he wasn’t interested anymore, he could always stop. It’s just not the end all be all anymore, unless it gives something back to him.
“We must accept finite disappointment, but we must never lose infinite hope. – Martin Luther King “
So gather up your courage and try to enjoy some aspect of those things you were more immersed in. Even though you may not be the head coach on the sidelines anymore, they will love that you are there, still taking pleasure in their experience. The first time may be hard, feeling the loss, but it gets easier and feeling the love and joy is a good thing. 🙂
“Life is a great sunrise… ” – Vladimir Nabokov
You have read my mind! I seem to be at this stage right now where I am trying to decide what I want to do with my life and who I want to be. Just as you said. I feel like I was stripped down to the bare essence of who I was before treatment. Now I need to decide what I want to put back into my life. Just one exAmple is my computer skills. I used to be quite good with video projects. I taught myself how to first use power point then did video collages of school and sporting events and even a few weddings. Last month I was approached by a couple who were starting a photography business if I would consider doing weddings for them. After some thought I turned them down. Three years ago I would have jumped at the chance.
I M just at a place where my confidence in my abilities has faded and I am unsure about my health even though I am in remission. Well I could go on and on.
Thanks for helping me to put some of my thoughts into words. I always learn something while visiting your blog
Thank you Robin!
Karen, you should probably have your own blog (!!!), but selfishly, I’m happy to read your comments here which are always so insightful and add so much to the conversation! You made me laugh, and the take away from all that you said, of which there are many, is “flexibility!” I would have to say that was the most important thing I had to keep me sane. I learned to live more in the moment than ever before. Today wasn’t like yesterday nor an hour ago – only the monotony remained constant. And being willing to face and deal with what came next without having much of a clue as to what that might be. But being willing to change course with the wind was definitely the only thing I was sure of. 🙂
lori, the way you rock this blog is amazing. besides providing those great quotations, you hit upon what is sometimes the hardest thing in making decisions, forming attitudes, and making important judgement calls across the board in our lives: finding the middleground that is comfortable and just feels right. we don’t always have to say yes or no, up or down, go or stay, slow or fast. sure, it’s good for all of us to challenge our brains with thinking outside of the box, and at times, it brings about new ways of thinking about things that feel adventuresome and novel and pleases us. but much of the time, it’s finding our way to compromise – a kind of self-diplomacy, if you will. it’s like when our kids were little and they wanted to color on the walls. oh, yay – pretty for them, but not so great for the new paint job. so, most likely, the answer was to give them big expanses of paper so they could continue to let those creative juices flow. simplistic, as compared with so many huge decisions life presents us with, of course. but it’s an analogy like many others that comes in handy sometimes, and, surprisingly, is often difficult to apply when life is complicated with a lot more than crayons. in the past, you have encouraged your readers not be afraid to dream BIG. i love that because it gives us possibilities that stimulate and reinforce hopefulness. and as i read the last few of your posts, i see that the process of attaining those big goals often require us to adjust and fine tune time frames, means, abilities, emotions, and the occassional glitches we forgot to factor in. sometimes i think we get stuck in the all or nothing at all, take it or leave it, fail or succeed stances. but you have beautifully woven into the story of your’s and dave’s lives, as you both now can move forward in life post treatment, that we don’t have to sacrifice our dreams just because they might need a little tweaking. but the beauty part is – we can if we want to! we can substitute one for another that’s a better fit, or we can add even more bells ands whistles to the original plan, or we can raise our hand and say we need a break to re-group and re-think it all.
and your referencing how cgs and their loved ones are both so affected by what goes on when those roles are in full activation mode during diagnosis, treatment, and recovery is so valuable. cgs do a lot of gulping and stuffing emotions that make us cringe at ourselves, but are, nevertheless, so human. i need a break, dammit! and then, nearly out the door, ready to jump, whoop, and holler – free at last! – nope, not gonna happen. been there, done that – all of us. looking back, i can see i should have had a contingency plan, something to assauge my ornery resentment and dismal disapppointment. but i just wasn’t thinking in that mode, that idea of compromise. now i see, and hope other cgs who have these same experiences will see as well, that i could have given myself the luxury of something else to look forward to if plans to go out didn’t work out – a glass of wine and bubble bath, calling a dear friend to gab for awhile, eating that whole carton of ben and jerry’s i had stashed in the fridge (just the tiny pint size, mind you). the point is, sometimes having to be flexible is a royal pain when you want what you want, but being able to be flexible is a good thing to do for yourself; and it sure beats having all or nothing at all, which is how i felt at the time. hugh needed me, and i needed to be there for him, that was a given. but if i’d been more mindful of alternative ways i COULD have had a break if dinner out plans fell through, and still be there for what hugh needed …lesson learned. thanks lori for all your insight into these issues. dave is lucky to have you, and so are your readers.
love and hugs, karen
Inspiring as always Lori.