The Big Sick

Back when it was in theaters this summer, B and I went to see The Big Sick. It was written by Kumail Nanjiani and Emily Gordon, based on their real-life courtship – which involved Emily being in a coma. This is not a spoiler; it was well known before the movie came out, so I thought I would be able to handle it.

I was looking forward to going to the theater with B because we hadn’t gotten out much on our own, as we are in a major sandwich generation phase. It seemed like a good choice because the movie is a romantic comedy. Not only do we know that the couple get together in the end but it is also about a comedian (Nanjiani plays himself in the film) with lots of jokes in the show.

I did like the movie and think that it was well done. It was hard for me to write about it at that time, but it is now coming out on DVD, so this seemed a good time to revisit it and put out a post.

As I said, I knew the basic storyline, but there were things that were jarring to me. The first time we saw Emily on a ventilator reminded me of the last time I saw a family member with a tube.

Seeing Emily’s parents dealing with the doctors and trying to find the best care for their daughter brought back memories of dealing with past medical problems with my daughters. Emily’s parents are told that the doctors know what is going on and the treatment will work – and then it doesn’t. I know what that feels like. I know how desperately you want to protect your child and find the right person to help them get better. I know how little power you have in that situation.

Although the details are very different, I could also relate to the themes of family tensions around the experience of being an immigrant or the child of immigrants, religious differences between generations and spouses, and bi/multiracial families.

Erma Bombeck wrote, “There is a thin line that separates laughter and pain, comedy and tragedy, humor and hurt.” The Big Sick walks that line in a very human and meaningful way.

 

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SoCS: the birth of ABC

Things have been very busy here, so I wasn’t sure I would SoCS this week, but when I saw the prompt, I knew I had to join in.

Birth has been on my mind a lot this year. Our daughter E has been living with us this year. When she and her husband L left Honolulu last December, L’s graduate student visa expired, so he had to go back to the UK. It will take a while to qualify for a spousal visa for E, so she has been living here in New York State with us.

She and L were expecting their first child on July first or so. It was hard to be apart, but it meant that I got to help out with things like going for ultrasounds. L was allowed to have a 90-day visa for the birth. He arrived in mid-May in time to attend an all-day blitz childbirth class. At one point, they had thought that he should go back to the UK and return in mid-June for the 90-day stay, but they decided to just have him remain after the childbirth class.

This turned out to be a good move as their baby girl arrived on June 6, three and a half weeks before anticipated. I wrote about this emotional time here.

It was great to have E, L and Baby ABC here with us for those first two months. Now that L is back in the UK, they visit often by skype. We are looking forward to a visit from L in October and another in time for ABC’s first Christmas.

We are trying to savor every minute as we expect that E and ABC will re-locate to London early in 2018. It will be bittersweet as we want them to be together full-time as a family, but it will be so hard to have them so far away.

ABC already has two passports, though, so she is all set to travel! Of course, she will need to bring at least one parent along!
*****
Linda’s prompt for Stream of Consciousness Saturday this week is “birth/berth.” Join us! Find out how here:  https://lindaghill.com/2017/09/01/the-friday-reminder-and-prompt-for-socs-sept-217/

 

US Healthcare Update

Overnight, the Senate defeated the Affordable Care Act repeal bills. It wasn’t pretty, with 49 Senators willing to take health insurance away from millions of Americans, but 51 Senators stood up for us.

Now, we need Congressmembers from across the spectrum to engage with each other to craft legislation that improves and expands the Affordable Care Act so that everyone has access to affordable, quality health care. There are already some bill drafts that do that available as a starting point.

Let’s go.

finding hope in impossible times

I had hoped that my next post would be about ABC’s baptism and the family visits around that, but I haven’t been able to get organized to write it.

There has been a lot going on and a lot swirling in my head, so maybe this post will help…

My parents raised me to always do my best. I was fortunate that my best generally also stood me in good stead in school and in life experiences, as I juggled my various roles and tried to do good in the world.

When my children were young, there was a book about being a “good enough” parent. I remember bristling at the concept, because I was geared to be a “best I could be” parent – and daughter, spouse, sister, friend, citizen, Catholic, volunteer, committee member, musician, person.

The current roster of roles now includes grandparent, blogger, and poet.

And it doesn’t feel as though my best, even when I am able to muster it, is good enough.

Not even close.

With my mom in hospice care and granddaughter ABC in residence, there has been massive re-prioritizing, which is necessary and good and understandable. Some things in which I was accustomed to being very active, such as public policy and social justice advocacy, have been sharply curtailed, unfortunately at a time when my country is coming apart at the seams. I am keeping some of my poetry and blogging activities going, but in a scattershot way as I have time/brainpower available.

(It is not especially helpful to have Facebook reminding me how many days it has been since I posted to the Top of JC’s Mind Facebook page.)

I think, though, that the root of the problem is that nothing I do, whether it is my best or not, can change the fact of the mounting losses. Illness and decline and death and people moving away and rejection and running out of time and all manner of losses, anticipated or unforeseen, will keep happening, no matter what I or any of us do, think, or philosophize over.

And, yes, I know circle of life and faith and recommendations to take care of myself notwithstanding, some days are just difficult to get through without tears.

Sometimes, those days with tears string together.

I am blessed, though, with people who bring me as much support and comfort as they can when I am struggling. B to talk with and give me hugs. The warmth of ABC snuggling in my arms. E and L to step in and make dinner when I can’t wrap my head around the concept of eating, much less shopping and cooking. My sisters with calls, notes, and visits. Friends who are sending thoughts and prayers and who understand my sporadic contact.

Earlier this week, I was looking for a bell for Nana to use to call her nighttime aide. Unsure where to look, I went to a dollar store near the pharmacy where I was picking up one of Nana’s prescriptions. I don’t often go to dollar stores, so it was a bit difficult to figure out where to look. I had started to check out some possible aisles when I heard the unmistakable sound of a bell. I followed it to find a girl carrying a little bell toward the checkout where her grandmother was waiting for her.  I waited until they had finished their transactions and asked where they had found it. (The grandmother told me that the bell said “Ring for Beer” on it and that they were getting it for a beer-loving dad.) The girl cheerfully led me through the store to the shelf in the gifts aisle that held the bells. I thanked her. I chose a bell that said “Ring for Service” on it, paid $1.08, and brought it up to my mom’s, who was surprised that I had been able to find a bell so quickly.

(Feel free to insert your favorite It’s a Wonderful Life, serendipity, answer to prayer, etc. thoughts here.)

For me in that moment, it was a reminder that hope and help can appear unexpectedly in the midst of sadness and confusion and uncertainty.

I just have to listen and allow myself to be led.

 

 

Plan C? Seriously?

Last night, more Republican Senators made it clear that they would not vote to open debate on the latest version of the health care bill.

Within a couple of hours, Majority Leader McConnell announced that he would bring up a bill to repeal the Affordable Care Act, but delay its taking effect for two years, during which time the Congress would need to pass a replacement plan for the president to sign.

This is a bad idea.

The last time the Congress tried something similar was during a budget impasse. They put in place a sequester program that capped budget allocations for both discretionary and defense spending. The theory was that both parties would want to cooperate so they could allocate more money for their budget priorities. The reality was that no agreement was reached and there were some years that Congress didn’t even pass its appropriations bills, but used a series of continuing resolutions to fund the various departments.

This does not give high confidence that Congress would pass a replacement bill before the deadline.

Insurance companies and health care facilities are upset because this would create so much uncertainty for them.

The general public is concerned because the repeal is expected to immediately raise premiums and reduce the number of people who can afford insurance.

There are senators across the political spectrum calling for a new process to begin, involving input from all senators, along with public health professionals and the public, to craft health care reforms that will increase the availability and affordability of health care.

I hope that Senator McConnell will choose to engage in this more cooperative process which is in line with the way the Senate has traditionally operated.

catching up

I haven’t meant to keep you in the dark about life here. I just haven’t been able to wrap my head around posting much lately.

We have made a lot of progress with care for Nana. We now have her nurse/case manager from hospice on board and have been able to pass off prescription management to her. The number of medications needed has dropped because a number of them are no longer needed. For example, she doesn’t take a statin anymore because her cholesterol level is irrelevant at this point. It makes it easier to keep track of her meds, especially because hospice has taken over the ordering of refills.

Hospice is also handling medical equipment, such as oxygen and a wheelchair. They are good at solving problems, like providing cushions to protect her ears from the oxygen tubing. Simple things like that make a big difference.

It is nice to have just one number to call. If there are any questions, we just call hospice and they contact whichever doctor or service is needed. There is always someone on duty, even in the middle of the night, to address concerns or problems.

Meanwhile, ABC is already five weeks old! She had a checkup and is now almost two pounds (0.9 kg) heavier and 2 1/2 inches (6 cm) longer than when she was born. She has outgrown her preemie clothes and can wear regular newborn sizes. She is starting to focus on her surroundings. She is playing with some of her toys and is getting more tolerant of diaper changes, baths, and getting in and out of her carseat/carrier.

She is fascinated by her reflection in the mirror.

It is a blessing to have her here with E and L, watching them become a little family and assisting with baby care and general household tasks. Most advanced economies give parents paid time off for this life stage, although, sadly, the United States does not. We are grateful that E and L are able to have this important time to bond, especially because L will have to return to the UK in mid-August. We will miss watching his tender care of her, especially when he sits at the piano with her, cradling her in one arm and singing to her, accompanying himself with his free hand.

We are also blessed to be able to bring ABC to visit Nana and Paco. Unlike the earliest weeks, ABC now stays awake for part of the visit, so Nana and Paco get to see her deep blue eyes.

Tomorrow, L’s mom arrives from the UK and our younger daughter T arrives from Missouri. We are gathering for ABC’s baptism on Sunday.

ABC will wear a tiny white dress, first worn by my older sister, followed by me and our younger sister, twenty-some years later by my daughters, and twenty-some more years later by my granddaughter.

I retrieved it from the bottom of Nana’s cedar chest last week and we will return it there next week, in case another precious baby girl arrives in our family to wear it.

 

Senate shenanigans

While we have been dealing with our own family health issues, I have also been keeping my eye on the sorry spectacle unfolding in Congress.

Last week, the Senate Republicans made public their version of a health care bill to replace the Affordable Care Act. It was drafted by a small group of the most conservative male red-state Republican Senators, without hearings, public debate, the input of health care experts, and contributions of the other 87 Senators, who are Democrats, Republicans, and Independents.

The bill would cut Medicaid over time, raise deductibles, decrease the comprehensive nature of insurance, increase premiums, make insurance unaffordable for millions of people, and give massive tax cuts to the wealthiest Americans.  It faces major opposition from doctors, nurses, hospitals, insurers, public health organizations and advocates, and the general public.

Still, Majority Leader Mitch McConnell plans a vote on the bill this week. It seems that the main reason is to have the first major piece of legislation enacted in the new administration, not to actually improve medical care access or affordability for the American people.

One of the things that has been most annoying is the Republican members of Congress and some pundits and reporters who equate the current process on this healthcare bill to the process that produced the Affordable Care Act. The Affordable Care Act was passed after almost a year of public discussion, numerous Congressional committee hearings, expert testimony, amendments from both Democrats and Republicans, Congressional debate, floor votes, the creation of a bill to reconcile differences between the House and Senate versions, and a final round of voting with met the 60 vote total in the Senate to avoid filibuster.

Contrast this with the current Republican bill, which was written behind closed doors by a small group of Republicans. There are no hearings, plans for only limited debate, and the invocation of budget bill rules which make it impossible to filibuster.

There are two Republican Senators who are opposing the bill because it will hurt their constituents and other Americans. Four other Senators oppose it as not conservative enough. After the Congressional Budget Office analysis came out yesterday, with projections of 22 million people losing coverage and costs skyrocketing especially for those with low incomes and those who are in their late fifties to mid-sixties. there is hope that Senator McConnell will pull the bill or, at least, slow down the process to allow for more debate and revision and to put the bill under regular order instead of trying to reform healthcare through the budget process.

Many of us are inundating our Senators with pleas to protect and improve our healthcare. We’ll see if they listen.