Friday, September 15, 2017

When You Need Somebody - Part I


"Tell us - from friends, loved ones, and even acquaintances- what does help/support/relief/kindness really look like?"

I've been mulling this question from my friend, John G., for the past few days.  He suggested the answer might make a good post here.  After giving it a lot of consideration, here's my first attempt.  Not a definitive description because I don't think there is one.  At least I don't have one.   What I will share, for now,  is what I am learning about support.

~ What support looks like not only varies from person to person but also for any one person, depending on the challenge and when it appears.  When John was battling non-Hodgkins, we lived in Houston, in an apartment near the hospital.  I didn't have to cook or clean and we were 12 years younger.  I needed very little physical help as compared to today.  But I could have used more emotional support; maybe I just didn't understand that I did as much as I do today?

~ There may many people who will offer to be of help, and though some may offer only as a courtesy, no one is a mind reader.  Unless someone knows you very, very well, they cannot know what you might need and what you will accept. Even if they know, a new situation may require a level or kind of support neither of you recognizes.  I've found it helpful to me and those who would support me to list all the ways someone could help me physically, intellectually and emotionally.  It led me to make many requests I would not have otherwise - asking our window cleaner if he would take down all items from upper shelves so that neither of us needs to use a ladder anymore, replying to a friend who asked me what could lift my spirits that day -"flowers", or to another "a regular luncheon date at a spa."

~Which brings me to my last point (for now), and perhaps the most important - support, help, assistance, however you refer to it, is as much related to whether or how well you accept it as to whether or not it is offered.  In the past, my pride was an obstacle to receiving the support I wanted.  Sometimes, I thought it a sign of weakness or incompetence to admit I needed help.  Sometimes, I'm embarrassed to say, I thought I could do it all or better. Experience has taught me otherwise. Sometimes I just didn't know what I needed. And sometimes, even today, I get too overwhelmed, too caught up in anxiety and fear to even recognize what is being offered.

Well, John, my friend, your question has instigated some serious thought. I recognized even as I started to compose my reply that there is much more I want to add - so there will be a Part II.  In the meantime, I welcome comments, questions, and other ideas.  Support each other?  What a wonderful idea.








Sunday, September 3, 2017

Hope for the Best; Prepare for the Worst


The first time I heard "hope for the best, plan for the worst" was the morning the man designated to become our hematologist delivered the news that blood tests revealed John had a cancer of the blood and perhaps only six months to live.  

Dr. W. was the hematologist on call the morning after I had driven John to the ER, struggling to breathe. Tall, lanky, soft-spoken, and unassuming - my first thought was of Ichabod Crane. He said as gently as I think anyone could that he thought it could be leukemia, advanced and apparently aggressive. When I broke down in tears, he put his hand on my shoulder and uttered the phrase that I have since inscribed behind my eyelids.

After a second series of tests at MD Anderson, a diagnosis of Therapy Related MDS was confirmed and the prognosis extended to two years. Once again we were told this cancer is incurable and once again exhorted to hope for the best (which would be improved treatment to add life expectancy), but plan for the worst.

It has been a year since that morning I brought John to the ER.  We somehow continue to be hopeful, referring to John's cancer as currently incurable, learning how to work effectively with the clinic, consulting with MD Anderson, adjusting schedules and habits.  All thanks to my naturally optimistic husband.  He, who reminds me he is not a statistic.  He, who declares he will live longer than two years.  

I, on the other hand, at my best could be described as a realistic pragmatist.  On my worst days, as a chronic worrier.  So, I research and note questions for the doctors.  I wake in the middle of the night to make note of something else I need to learn "just in case" or add to our "plans." I try to imagine life without him.  

Historically, we have learned to balance his optimism with my pragmatism, to temper my tendency to worry with his hopefulness, to sustain a healthy tension between our two world views.  But this is new territory. His cheerleading hasn't helped me sleep at night.  And I have struggled to create a sense of urgency without diminishing the sense of optimism he needs to continue to fight.

Then, in the middle of uttering one more time that we needed to remember to hope for the best but also plan for the worst, I realized the phrase had lost its power.  It had become a cliche.  I stopped and asked if John could help me hope for the best, but prepare for the worst.  I asked if we could move from talking about and thinking about and listing to more deliberate action.  Could we schedule an hour every day to check something off my to do list or at least move something forward? 

So - we are preparing.  Can I imagine life without him, no way.  Do I want to, no way.  But for now, at least, there is a semblance of balance again.  We can do both.  We can still hope for the best while preparing for the worst.