Month: October 2014

The scales were tipped and I was feeling guilty

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Party

I just got home from a party given by friends, Kyeonghi and Bernard, of the Buffalo church we attend.

Thirty-five people showed up, many wearing hilarious wigs in honor of my (still) hairless days. It was a blast. Most are young and full of “we are hard-wired for fun!”

Later

I sat in the dark of my apartment explaining to David that I was having some internal dissonance.  (Poor guy – he has to endure therapist phrases and he probably just wants to say, “Can we simply call it confused feelings?”)

“Maybe it wasn’t all so bad after all (my cancer treatment).  I’m kind of feeling that I may have made a big deal about nothing so terrible.”

David’s response was straightforward, “Yes, it was a big deal; trust me.”

Maybe I am going through something like the aftermath of child bearing. The relief of new life causes a kind of amnesia of the pain you thought you would never get over.

But then again, I wasn’t satisfied with that analogy. Something else was going on. I stared at the basket of cards from friends from Juneau and other places.  I looked at the books and gifts sent and reminded myself of the countless phone calls from family and friends and the many emails even from David’s clients and colleagues who had never met me but wanted to encourage me.  People read my blog and were unbelievably kind in their responses. Friends traveled to visit me or house me.

The kindnesses that I received from my health providers and just random folks I would meet in the hospital – all of these memories were flooding me with that “internal dissonance” thing. The level of kindness far exceeded the level of suffering.

Because I was feeling unworthy of this amount of kindness crazy thoughts were entering my head in an effort to make sense of it. “I must have communicated to everyone that it was worse than it was. Did I tell them I was dying?  Did I let on like I was bedridden and hospitalized most of the time?  Did I say that my head was in a bucket 24-7 during chemo?  Did I intimate that surgery had complications or that radiation could only be endured with drugs, prescription and recreational?  In short, did I exaggerate this whole thing in spite of the fact that my doctors were telling me I had a high risk disease and treatment would be intense?”

I thought of the support of my sweet daughters, their husbands and my grand boys and my courageous 88-year old mother who looks after my 91-year old father.  It was beginning to feel like too much.

Too much support.

Too much love.

Too much guilt from all that love and support.

Too much God – is that even possible?

The scale was tipped in favor of love – far outweighing the trials of cancer treatment.  I was overwhelmed with undeserved love.

Of course it was undeserved.  Christianity 101 tells me that.  None of us get what we deserve.  God help us if we do. It just can’t be about deserving. I don’t even want it to be.  It gets back to that fair thing I talked about in my last post.  After all, do I deserve all this support and some other person in a hostile dangerous place who is being horribly persecuted for their religious belief or ethnic heritage deserves being alone, feeling forgotten and wondering why God is silent.  Does she or he deserve that treatment while I am showered with love and support from friends and family?  Of course, not.

What to do with all this

There is something else going on.  What are we ultimately meant to be thankful for? Please don’t get me wrong, I’m very grateful for the support of friends, family, and health care providers who, in part, sustained me through this ordeal. But I know that right now at this moment countless people of Christian faith and other minorities in faraway places and prisons are suffering, even dying, alone and unnoticed.  What sustains them?  It can’t be, “God loves me this I know for I have so many friends and family telling me so!” Equating God’s grace and blessings to family and friends and medical support just do not cut it for the multitudes deprived of basic human rights.  I once read John Stott, the late theologian and vicar of All Soul’s Church in London, say something to the effect that he could not worship a God who had not suffered pain, abandonment humiliation and forsakenness. Thank God we have that God in Jesus Christ. His suffering appropriated something profound, cosmic and eternal for which anyone of us can be blessed, whomever and wherever we are. Now, I am venturing into territory that I cannot speak authoritatively.  But someone can and has.  His name is Ziya Merkal.  I read an article of his in Christianity Today back in 2008.  I printed off a copy, put in a manila folder and over the years have reread it many times.  Here are the links to two articles by Ziya Merkal , “Bearing the Silence of God” ( the one I carry around) and “Standing with the Desolate” (recently read this on line). Please read them.

After listening to my angst in the darkness of our apartment after the lovely party thrown in honor of my end-of-treatment.  My husband said, “Dona, just be thankful.”  Good words spoken by the champion of support, love and perspective during one of the toughest 9 months of my life.  But David was quick to point out that the apostle Paul said it better in I Thessalonians 5:18,

“For this is the will of God, that you be thankful.”

It’s not fair

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My last post promised theological reflections on the article, “Are you too Good Looking to Get Sick?” This piece bothered me and I suspect that it bothered you as well if you read it.  In summary, a study indicates that the more attractive a person is the higher their good health quotient.  According to the research people considered to be very attractive are statistically shown to have better health, avoiding a host of diseases and disorders.

clothespin-nose-donaWhy does this bother me so much?  Well to put it simply: it just does not seem fair! Before I go any further and find myself accused of hypocrisy, I admit that I want to be considered an attractive 63 year old woman as much as the next woman or man but I don’t want it linked to better health.  Again, it just doesn’t seem fair but then who said life was fair? Right? I mean why do I get cancer and somebody else doesn’t?  Is it because I’m not attractive enough? Why am I being treated with stage 3 breast cancer and the woman sitting next to me has stage 4 (metastatic cancer).  That doesn’t seem fair to her, does it? Who knows? Maybe it’s because I have a small nose and she doesn’t (another positive physical characteristic listed in the article). Wait a minute, I don’t have a small nose.  In fact, when I was 13 years old I tried going to bed with a clothes pin on my nose to stop it from growing any further.  It hurt too much so I didn’t follow through. Maybe if I had followed through I wouldn’t have gotten cancer at 62.  I know that these musings are degenerating into absurdities but some scientific research topics can sometimes be “crazy making”. They can tempt you into believing that it all comes down to whether or not you dodged a bad gene bullet or got more than your share of good genes in the celestial line-up.  As it turns out Life appears not to operate like a functional family full of siblings; each one born into the belief that they have an inherent right to be treated equally.

Theological reflections:

First, the Gospel of Christ actually begins with an understanding that life is not fair. The world is damaged and people are damaged goods; that is why we need a Savior. Everything is out of kilter not “just our face symmetry” (another one of those hallmarks of attractiveness leading to better health). And there is a myriad of ways that that damage is reflected in our DNA, environment, intelligence, upbringing, life choices etc. etc. We are not wired to be perfect.  The Genesis account of our creation assumes our predisposition to mess things up, even though it was not God’s intent in making us that way.

Second, read the Gospels in the New Testament and you quickly meet a Jesus who has a preference for the poor, marginalized, vulnerable, abused and sick.  He says that he “came for the sick, not the well” which it turns out to be all of us in one way or another. Many would disagree with such a grim assessment of human nature but that is how I read the Gospels and the experience of history and the present realities of human affairs.

Third, there is no mention by the gospel writers of Jesus’ physical appearance in spite of the fact that we have had a feast for the eyes for centuries of a beautiful Jesus who is tall, Nordic, symmetrical, with eyes big and blue as the sky. (Thankfully, in recent decades we have had art and media depictions of Jesus with Middle Eastern good looks- not anymore helpful- but at least less racially biased.)   So, why no mention of Jesus’ appearance in the Gospels or the Epistles of the NT? There is a lot of speculation.  I’ll weigh in on this : it is irrelevant and a distraction to the gospel message.  God in Christ has come to be with us, all of us.  And  maybe those in the world who don’t have good health, good looks or good standing and prosperity are better positioned to the kind of humility that brings souls to the fact that they are in desperate need of the Jesus who says,

“I am the bread of life” (the one who wants to feed the emptiness in souls)

“I am the Good Shepherd” who is willing to leave the flock to look for the one lost sheep. The one who is always with us through whatever circumstances we encounter.

“I am the light of the world” whose light exposes the darkness around us and within us and then shines hope and forgiveness, revealing the way back home to Himself.

The Gospel of John is the place in the New Testament that Jesus pronounces the “I am” statements like the three mentioned above. There are others. At different times in my life at least one of the “I am” statements have met a need; each one profound, personal, hopeful and able to penetrate the walls of resistance to His love, healing and grace. Not always but enough over the years to build a relationship of trust that is not dependent on beauty, health, admiration or even fairness.

Comic postscript:  My husband, David, wonders when there is going to be a study on the health of people like himself who think they are good looking but really are not; but then again that would have to be a study that would take in a lot of the world’s male population. Ah, if we women could only have the confidence of boys!

“Darling, it’s better to look good than to feel good”

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Sitting in the radiation therapy waiting room, a woman waiting for treatment complained about things people have said to her since her diagnosis. “You don’t look like you are in cancer treatment, you look so good.”  She went on to explain that she did not feel like she was doing well.  She was filled with  anxiety because of a return of breast cancer and two tumors recently found on her lung.  She went on to say, “I have always tried to look my best…..but that certainly doesn’t change what is going on inside of me.”  My heart went out to her.

In an old Saturday night live skit Billy Crystal made the following comment famous, “Darling, it is always better to look good than to feel good.”  So silly and shallow, but funny.  Yet, since 1989 the American Cancer Society has sponsored a free program called, Look Good, Feel Better.  Any cancer patient can sign up for a consult with a cosmetician and receive a free bag of cosmetics suited to skin type.

I am struggling a bit here. Read my post called “The New 60?” to understand why. But actually, I appreciate what the American Cancer Society is doing with this kind of program.  You only need to read a couple of testimonies from women who participated in Look Good, Feel Better to get teary-eyed and grateful for such a thoughtful program. As one woman explained, “I was pale, hairless with dark patches on my face and feeing terribly self-conscious. During the beauty consultation I felt uplifted and normal and more confident to meet the public.”  I found the program a boost to my self-esteem as well.  And I could do it without feeling so vain. After all, I am being treated for cancer. I get a free pass for a lot of things.

If this was my last word on the topic I would have given a nice advert and thumbs up to a good program and left it at that.  But I did a little research on the scientific studies associated with looking good and feeling good and found a study that left me disturbed and prompted theological reflection.  If you are curious about that study read the article, “Are You Too Good Looking to Get Sick?” at:  http://www.dailymail.co.uk/health/article-2675563/high-blood-pressure-asthma-research-says-looks-affect-risk-illness.html

If you are curious about my theological reflections read next weeks post.

 

Roswell Park Cancer Institute: Playground for grandchild and me

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Happy-volunteer-fist-pump-kid1Today like every day except weekends I had radiation treatment at Buffalo’s Roswell Park Cancer Institute (RPCI). Desmond, our 15-month old grandson, came along for the ride. David watched him in the lobby of this huge sensory-filled place while I got my 20 minute treatment from my new best friends, my radiation therapists. After the 20-minute treatment David, Desi and I just hung out for an hour. I know it sounds weird to be hanging out in a cancer hospital with a child. What is wrong with a playground? But this bright expansive atrium with its Dunkin Donuts café, live music, gift shop, therapy dogs (one says hello in Spanish) and most importantly, a squadron of volunteers made Desi’s time special. Special for him and special for me since the end of February when I was diagnosed. I have yet to come back home immediately after a radiation treatment. I like visiting, snacking and socializing at RPIC. Those of you who know me are going to chalk this up to my sociability. Fair enough, I am social with or without steroids but that is not the whole story. There is an upbeat spirit about this place that goes way beyond my personality. And it is not just me who feels this way. Just ask anyone who has ever received treatment here. The army of volunteers and caring staff make the difference.

Those that can do, doI have been conducting my own informal poll; asking volunteers how long they have been volunteers, what they get out of it, and what motivates them to volunteer. As you might expect many are cancer survivors that have received treatment at Roswell and found the experience tolerable because of the way they were lovingly treated. Some have been caretakers of loved ones who received good care and warm receptions. And amazingly some are still currently in treatment for cancer. Their motivation is not too surprising, “I simply want to give back in some tangible way.” Other responses include enjoying the volunteers (lots of laughing among these folks) and the caring professional staff that appreciate them. Ryan, a paragon of upbeat-ness and coordinator of volunteers, describes going to a conference about volunteerism in the Western New York health care system. He learned that the average retention period for volunteers at health care institutions was less than a year; for RPCI it was 4.8 years. Hands down they outscored the others.

Shirley, a volunteer of 8 years coming from Canada, (no small sacrifice…Canada is just across the river but still a ½ hour to one hour border crossing each way) told a story of being part of a team that gave tours to CEOs from cancer hospitals all over the world. At the end of the Roswell tour, the CEO’s agreed, according to Shirley, that to two things that distinguished RPCI from other top cancer hospitals was the art work displayed and the Roswell volunteers.

But why is that? I am sure other hospitals have volunteers that are wanting to give back for the care they received. So, I went to another source to discover what the reason might be for the warm aura in this place and the long retention of its volunteers – over 500 strong, age range 14 to 98. Again, it feels a little weird to be talking about a cancer hospital like it is some kind of spa. But then again maybe it’s the element of unlikely expectations that provokes such appreciation. If I went to a spa I would expect to be pampered and warmly received. I don’t think I would ever have expected that going to a cancer institute would be anything but tedious and terrifying.

rockwellI asked the director of volunteer services, “Why do you think this place attracts happy volunteers?” I explained that I was a patient and was numbered with many who felt cared for. I told her my story. “I could not face leaving the hospital after hearing the news of the pathology report after my surgery. I had to stay, sit, pray and walk around as I soaked in the ambiance – a nurturing kind of ambiance that I had no words for but knew I needed for a while before I was ready to leave and face life “on the outside”.

But my story doesn’t even come close to the heart rendering story I heard from the director’s assistant. A 20-year old boy was diagnosed with cancer and in 6 weeks he died. The family of the young man was so grateful for the care and attention that everyone showed (staff and volunteers) that over a hundred flower bouquets were bought and hand delivered to each person who interacted with their son and family in that short period of time. Their son liked flowers and the family could think of no better way to show their appreciation. There were other touching stories but the director also wanted to sing the praises of the administration who was consistently supportive of volunteers, making them feel needed and welcomed. “I feel a need to thank them (admin) almost every day.”

So here is what I have learned about volunteer competency, happiness and retention through personal experience and internet research. And by the way I have seen this happen at the Palestinian Bible Society with their volunteers and with Love INC – a charitable service for people in need in Juneau, Alaska.

  • Volunteers have a need to feel like they are part of a mission bigger than themselves.
  • Volunteers have a need to feel like they are giving back blessings because they know they have been recipients of blessing.
  • Volunteers need to get along with each other and enjoy each other.
  • Volunteers need to feel appreciated and needed by those in authority.
  • Volunteers need to be part of a well-organized system that knows what to do with them.

But there is something else going on amongst these volunteers that is special but intangible. It cannot be reduced to bullet points. Throughout this “Dona study” of RPCI staff and volunteers, I have repeatedly sounded like a three year old who wants to understand something that is eludes my ability. “But why do you think this is so,” has been a common refrain as my therapist-mind wants to reduce ‘whys’ to their most indivisible core. I have concluded that I am not going to get my ultimate answer. Once again I must go to my default since this entire cancer treatment journey began: what is clear in the mind of God is a mystery to me. And not having my answer will not stop me from enjoying His benefits.