McMusing: A Blessing or a Privilege?
An end of week reflection.
Many times over the past two weeks, I have considered how fortunate Scott and I are to even consider a liver transplant as an option. And then, to have the support to make that happen. I listened to stories, and learned that many who would physically qualify for a transplant do not qualify because they were unable to meet the following requirements:
Being prepared to leave home any time of day or night (for possibly months) to reach the center in less than two hours (preferably one hour) should the call come that a liver is available. This could happen multiple times since two people are always called in and prepped for surgery so there is a backup. (Once we are on the list the suitcases must always be packed.)
Having multiple standby friends or family available for transport at any time of day or night since I can no longer—maybe never could—drive in downtown Seattle. Night driving is particularly unsafe. (This will require a deep list and we are still working on that list.)
Having a primary caregiver who commits to 24/7 care for three months after surgery. (Let me raise my very tired hand right here.)
Accommodations for post-surgery care that are close enough to the center for bi-weekly appointments at the medical center or emergency trips should that be necessary. (Let me thank Scott’s brother and wife here.)
A deep enough volunteer list to be sure transportation is available for all appointments. (Let me thank our son for building this list in the area where we will be staying.)
There is more but these are the basics and when I first saw this list, I had only one word: “IMPOSSIBLE!” But with the help of family and friends, it now feels hard but possible.
Is that a blessing? Yes. But it is also a privilege afforded to me by a life in which I had no serious obstacles to accomplishing what needed to be accomplished—aside from the impact of trauma and my gender. To believe that everyone in America can face this kind of catastrophic situation and find solutions is . . . arrogant. I can’t think of another word.
“In the United States, the average wait for Black patients who need an organ transplant is a year longer than for White patients — and that’s just one of many inequities.” (Read the article by Jewel Mullen, MD, MPH, MPA.)
There are many factors involved in this inequity that I won’t take the time to discuss. My point is that the fact that we are a well-educated, white family means it is easier (not easy) for us to do this. That is a privilege. To accept this requires us to accept that not all can access the American dream through effort alone. For many, there are systemic barriers that stand in the way of success. We want to share the examples of those who crawled out of poverty and became successful, but that is an exception and not the rule.
When the following article showed up in my inbox today, I realized it was necessary to carefully separate the blessings (how well we are loved and already receiving help from many) from the fact that we can even consider a liver transplant as possible. In large part, we can consider this possibility because we inherited privilege. To consider that a liver transplant is possible for everyone who needs one comes from the vantage point of privilege.
As John Pavolitz stated, “America has been good to me and people with the privilege I was born into—but it needs to be good to everyone.”
When Jesus said, “The poor you will always have with you, but you will not always have Me” I believe he was saying, “Yes, care for me now because I am getting ready to leave, but when I am gone, the poor will still be here for you to care for. This goes along with, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.” We need to help those who find it so difficult to reach the American dream.
While I count my blessings I must realize that others cannot make the same choice we are making. So many in this nation cannot even begin to consider a liver transplant as an option and if they do, their roadblocks will likely be more difficult to climb over than the ones we are facing.
I am humbled by this truth.
I remember thinking about this when Andrew and I were dealing with cancer. There were people who said if anyone should be healed, it should/would be him because my husband is a pastor. I really struggled with this—the idea that he, or we, deserved more than someone else. This is something that is so difficult for parents of dying children to grapple with—that God would choose one over another.
I have thought a lot over the past few years about the survival rates of African American women with triple negative breast cancer, as well as other health disparities. I think about the pressures my black friends have faced that I will never know—and the impact on nervous systems, etc. These health disparities should not surprise us because of what we know about epigenetics.
There are ways I do not consider myself privileged. And then there are the ways I know I am because of my white skin, my education, and my role as a pastor’s wife.
We have begun to have conversations with our children about the Holocaust, the way black people have been treated, and the fact that people are often treated badly because they are “different” in some way. It’s challenging to know how—and how much—to share with young children who have trauma backgrounds. But I do not want them to grow up with a white-washed view of history, either distant or more recent.
When we went to court because of our daughter’s attempted kidnapping, I remember thinking it would be good to bring others with us—to make it clear that we had a community, that this was not some “random little girl.” At the same time those words made me cringe. What about all the “random little girls?” Don’t they deserve to be valued in the court system and everywhere else? What a little girl has and where she comes from does not change her worth. Every little girl is born bearing God’s image. Every little girl, no matter who she is or what she has, deserves to be deeply loved and protected.
I was a “random little girl.”
This is so very true. I volunteer as a peer-to-peer mentor for people who are waiting for a heart transplant to help them navigate the process. I recognize how privileged I am to have been able to receive two heart transplants. The first time was sheer luck and I had no idea what was happening and I was too sick to do anything about it. The second time, I had to engineer my own luck when my original hospital turned me down for a second transplant and I had to move across the country to a hospital who would do the surgery. I was privileged on many fronts - the kids were grown and gone, I was able to continue receiving sick pay from work so I could continue to pay my bills, I had a 401k I could plunder to finance the move, and much more.
Since then, I have done a lot of research on what assistance is available to those in need of a transplant. I shared some of them with you via Substack message.
I wish both you and your husband a great deal of strength and luck as you move forward with this process. It is arduous in the doing, but rewarding in the long run.