Music of Hope and Change

In the summer of 1988 I went to see Steve Winwood in concert, and his opening act was Johnny Clegg and Savuka. In case you’re unfamiliar with the band, they were a South African group formed during the final years of apartheid, but their music seems as relevant today as ever.

I don’t remember much about their performance other than liking what I heard and saw. Years later, I picked up a CD of their greatest hits and each time I listen to it, I find more to like.

Their sound is fairly typical of African rock and roll of the era, with the distinctive guitar tone, steady drum rhythms, and chanting vocals. For comparison, Paul Simon’s “Diamonds on the Soles of Her Shoes” has a similar feel.

Here’s the thing: Clegg was a white South African and say what you will about the “white savior” problem in the arts, but his work shows a profound sensitivity to the issues of apartheid. In the songs that I know, the band sings of a pan-African unity, the heartbreaks of racial injustice, and the resiliency of the African people.

One song in particular jumped out at me as I listened to my CD last week. “Asimbonanga” is a slower tempo song with a lot of Zulu lyrics. But it becomes clear upon repeated listening that they’re singing about Nelson Mandela’s imprisonment on Robbin Island, and also about the many South Africans who suffered and died from the systemic racism in that country. At the end of the song, Clegg recites a few names–Stephen Biko, Victoria Mxenge, and Neil Aggett. He is “saying their names,” reminding us that these were people who dedicated their lives, literally, to ending systemic racial oppression. “Asimbonanga” translates as “we have not seen him.”

Johnny Clegg may not have understood apartheid in the same way a black South African would, but he nonetheless risked a lot. According to Born a Crime, Trevor Noah’s autobiography, “Apartheid was a police state, a system of surveillance and laws designed to keep black people under control. A full compendium of those laws would run more than three thousand pages and weigh approximately ten pounds….”

My ticket to see Nelson Mandela, June 30, 1990.

Under the system, it was illegal for blacks and whites to mingle, and the band risked attracting the attention of law enforcement every time they performed in South Africa. Despite the risk, the band was undeterred in its goals. The band was advocating radical change.

Two years after I saw Johnny Clegg and Savuka in concert, Nelson Mandela was released from prison. He made a triumphant tour of America, and my mother, my girlfriend (now wife), and I went to see Mandela live at a large rally in Oakland, California. Even considering the depth of my own white privilege, I understood that the decades of hard work by artists, journalists, and ordinary people had at last yielded results.

I can only hope for the same here in America.

Change Comes from Within

A few years ago, a documentary aired on TV called 1968: The Year That Changed America. It was about how the events, politics, and social movements of 1968, in the words of the producers, “forever changed the modern American landscape.”

Except that, it now would seem that nothing ever really changed at all. America may no longer be legally segregated, but we are as much divided along racial, ethnic, and religious lines as we ever were. The federal government is in chaos and unable to effectively address the real needs of the American people. People are protesting in the streets nationwide. We have a president who is egotistical, unqualified, and more interested in scoring political points than actually governing the country. We have a media industry that is both part of the solution and contributing to the problem. We have an economy that works well for a few people and excludes many. We have people self-destructing through excessive drug use. We have a Congress that appears to be unable to do anything meaningful.

It would appear that we as a country have learned nothing, and it makes me wonder how that happened. It is as if we collectively have an underdeveloped ability to learn, to regulate our own behavior, and to make changes for the better. Perhaps we suffer from multiple personality disorder, that there isn’t just one America but many, many different ones.

Or perhaps we are in recovery from trauma, that the events of 1968 didn’t set us on the road to improvement but rather created the dividing line between before and after. Most people who suffer a traumatic event view it as a pivotal point in their lives, that they are not the same person after that they were before.

Maybe America continues to struggle with coming to terms with this new sense of self, and we’re not there yet. But are we trying? Sometimes I wonder. Many are, but are there enough of us to create true change? Is change gonna come? Or will we just anesthetize ourselves and turn a blind eye to the real work that needs doing.

I would like to think we have it in us to do the work. When we’re at our best, we do. But, as with anything, we have to want to change. And it is our loss of we don’t.

A genuine change must first come from within the individual, only then can he or she attempt to make a significant contribution to humanity. – Dalai Lama

Happy National PKD Awareness Day

I have a wristband. It’s one of those silicone rubber types, in a teal green color, and in six letters it delivers a simple message: END PKD.

When I wear my wristband, no one asks about it. It is overlooked, much like the disease it represents, a genetic disorder that is one of the four leading causes of kidney failure in the nation.

end_pkdPolycystic kidney disease, or PKD, affects millions of people worldwide. My wife suffers from it. Cysts filled her kidneys to the point where they became more than twice their normal size and began to cease functioning.

There is no cure for PKD. The outcome is always the same: sooner or later, the sufferer reaches end stage renal failure. At that point, the only options are dialysis or an organ transplant.

Last year, my wife, who is in her mid-forties, received the news that her kidneys were failing. She was put on the national organ transplant waitlist but we both knew that waiting for a donor to come forward was a long shot. The idea of spending years dependent on dialysis seemed both unpleasant and medically less than ideal. A living kidney donation, we were told, was the best alternative. But whose kidney?

In February of this year, I decided to offer myself as a potential donor. If I said it was an easy decision to make, I’d be lying, since there were many factors to consider. We do not share the same blood type and we are obviously unrelated, so I thought it might not work out. But making the offer and getting screened was a small act that felt like the right thing to do.

As it turned out, the screening showed I was a suitable match. On August 15, we had the transplant surgery. I came to believe it to be a way to move forward and do something positive for her, for our children, and for our families.

As you read this, my kidney is working in my wife in place of the ones that PKD destroyed. However, this does not end PKD for her or for the population. Much has yet to be done to understand how the disease works. Current research holds out hope that, by reducing cyst growth with appropriate medication, those with the disease can delay end stage renal failure and live with their own kidneys for as long as possible.

Today is National Polycystic Kidney Disease Awareness Day. I am wearing my wristband both as a symbol of where we’ve been and as a reminder of what we still need to do. If you see me, ask me about it. I’ll be happy to tell you what it means.

25 Ways to Appreciate a Kidney Transplant

Last year, we learned that my wife would require a kidney transplant. This did not come as a surprise, since she suffers from polycystic kidney disease (PKD), a genetic renal disorder that affects one in every 500 people and sooner or later destroys the kidneys’ ability to function.

0817131036After some soul searching, I decided to give her one of mine. It was not an easy decision to make since there were many factors to consider, but I am at peace with it now. In fact, I’ve come to appreciate some things about a kidney transplant that I never would have thought of before.

After having read Amy Gutman’s 40 Ways to Appreciate a Kidney Stone, I thought I would create my own list of ways to put a positive spin on a tough situation. (She, in fact, only came up with 25, so we’re on par with that, and I think it’s plenty.) So here it is…

25 Ways to Appreciate a Kidney Transplant

1. It’s not cancer. An organ transplant is major surgery with all the attendant risks. However, it is a fairly proscribed event–especially kidney transplants–with defined boundaries and well-understood outcomes. Cancer is still the king of menacing diseases. There is so much that remains unknown about cancer, and so many ways in which it works, and the outcomes are so uncertain. It really destroys lives.

2. It’s not some mystery illness that eats away at one’s quality of life without any hope for a cure. In fact, there is very little that is mysterious about kidney transplants any more. The first one was performed successfully in 1954, and today, thousands are completed nationwide every year.

3. We only need one kidney anyway. The reason for why we have two is buried in the mists of prehistoric time. Today, in most developed countries, the second one is a redundant system we’ll probably never need. And studies have shown that the long-term health of donors is not significantly different from that of the general population.

4. A kidney has an almost plug and play quality to it. It’s a relatively simple organ that performs its job well. Once you get the right match and make the transplant, it starts to work. My wife was producing urine almost immediately, and her blood chemistry improved dramatically within days.

5. Urine never looked so good. The production of urine is a bodily function we all take for granted. But were it not to happen, we would die. My leftover kidney has taken up the task heroically, and while I have been annoyed these past few days by how often I visit the bathroom, I am also very thankful that all is well for both me and my wife.

6. Kidney transplantation is quite literally life-saving. I’ve never saved a life before. Now I have.

7. Becoming a living donor does not require that you be a blood relative to the recipient. While it can make screening easier, it by no means is an absolute rule. I am a case in point.

8. Becoming a living donor does not require that you be the same blood type as the recipient. I am Type O and my wife is Type B, so I’m what’s called a “universal donor.” But more than that, there is so much that is understood about the transplant process, and the anti-rejection drugs have become so effective, that blood type matching is less important than it used to be. Frankly, the fact that it was a living donation is more relevant to her long-term outcome than any blood type match.0816130915

9. In by 6, out by 5. We had the transplant done at the University of Maryland Medical Center (UMMC). They perform hundreds of kidney transplants a year. They are so good at it now that when surgery is scheduled, you are whisked through a process that seems almost routine.

10. When surgery is planned and well executed, recovery goes quickly. While I am still recovering at home, I left the hospital two days after my kidney was removed. My wife will spend about a week in the hospital. The healing is already happening. Which leads me to…

11. With planned surgery, we didn’t have to cancel or reschedule anything. This has been on the calendar for months and we were psyched up for it.

12. Effective pain management is a blessing. With the pain under control, I was able to get out of bed sooner than I probably would have otherwise, which the doctors told me was key to getting my normal functions back on track. Pain can also affect you psychologically, so having it controlled helped me think clearly.

13. Neither my wife nor I have experienced any adverse reactions to our medications. I’ve heard that for some donors, the pain medication makes them nauseous or woozy, which diminishes the positive effects. I had no such problem.

14. Being a living donor, people treat you like a hero.  I didn’t do this for personal glory, but the recognition is nice.

15. Donors at UMMC get a great hospital room. It’s more like a hotel room, with an eighth-floor view of Baltimore outside. It sounds like a small thing, but it made a big difference for my in my recovery.

16. It’s not a traumatic injury, like a car accident or a gunshot wound. It is a tightly controlled operation which means that the recovery is faster and more certain.

17. It builds community and brings out the best in people. My wife is now a part of the transplant community, and I am part of the world of living donors. It is a fellowship from which our membership can never be revoked. Furthermore, just saying that I am an organ donor brightens people’s days and inspires them to offer cheer and support.

18. You get to meet interesting people. All of my nurses were wonderful. And the surgeons and anesthesiologists were top-notch. In addition, my wife’s surgeon turns out to be a member of our religious community. What a small world!

19. Insurance covers the costs. Kidney transplants have such an established track record as an effective treatment that most medical plans cover it to some degree. Even Medicare has provisions for transplants.

20. It’s not living with an alcoholic spouse.

21. It’s not living with an autistic or chronically ill child.

22. It’s not living with abuse.

23. It’s not living with mental illness or a neurological condition.

24. I got used to wearing the hospital gown. I can see the appeal of sun dresses.

25. I’m losing my fear of needles. So many have gone in, what’s the point (pun intended)?


If you found this interesting, you can find more on this topic here and here.
 

It’s Time For a Revision: An Addendum

In any given situation, behavior can be at odds with one’s feelings about the situation. In such cases, people become discontent and seek ways to make their behavior and feelings consistent with each other. The condition–known in psychology as “cognitive dissonance”–is solved by either changing one’s behavior or changing one’s attitude towards it. Frequently, the chosen response is to adjust one’s attitude rather than trying to change one’s circumstances.

People have cognitive dissonance in connection with a great many things because, sadly, things are not always as we wish them to be.  We rationalize and make excuses, always hoping that if we keep re-framing, we can set things right. But many times, the situation is what is wrong, so that is what must change.
the Door

Recently, I came to realize that I’ve had cognitive dissonance  in regard to my career, and decided that it was time to do something about it.

Yet I have continued to wonder why it has taken me this long to seek out alternatives, and I think that maybe I’ve found an answer. A classic psychological study demonstrated that the more invested one feels in a situation, the less likely one is to abandon it and the more likely one is to try to change one’s attitude to fit. Such efforts to relieve the cognitive dissonance are not always successful. “It’s worthwhile, and a bit alarming, to ask how many…projects we fail to abandon – bad jobs, bad marriages, bad wars – because we think we’ve invested too much to turn back,” notes Oliver Burkeman, who writes about social psychology for The Guardian.

I’ve spent more than 15 years pursuing a career that I thought would bring the satisfaction of making a difference in the world. It hasn’t, and no amount of attitude adjustment is going to make it so. I had thought I’d invested too much to turn back, but my lay-off forced me to confront the absurdity of sticking with it. I see that clearly now.

I can close the door on this stage of my life. I’m ready to open a new one.