Entering your septuagenarian decade is a good news/bad news proposition for most of us. We have reached the age where members of our families are no longer with us and some of those old friends we have had since childhood also are no longer with us. We have become those grandparents that we so fondly remember, even though I suspect we all feel younger than our mindset for grandparents. Our topic this week is "The most heartbreaking thing in my life now".
I have narrowed that to two things, the first being personal - the fact that my daughter has Huntington's Disease - the disease that killed my late wife Lynn. Jamie is on a nearly identical trajectory with the disease as Lynn was. Unlike Lynn, having gone through this once with her mother, Jamie is actively aware of what her future holds. I assure you it is not pleasant. There is a treatment in development that could be very helpful called CRISPR - where the defective gene is snipped and removed, thereby eliminating the disease. Duke University in North Carolina is a major player and we are searching for a trial group but have been as yet unsuccessful. Jamie is doing as well as can be expected under the circumstances but there are good days and bad - most typically revolving around our relationship. She struggles with the knowledge that each of her three children has a 50% chance of having HD.
The other most heartbreaking thing in my life now is the condition of my country. The complete lack of civility in our discourse and the fact that a pathological liar, amoral sociopath has the attention of nearly half of the population. We have devolved into a society where half of the population embraces the lies and bizarre conspiracy theories of QAnon. The religious far right embraced the lies and conspiracy theories to allow the Supreme Court to be stacked with conservative chistians. Their hope is to advance their anti-abortion agenda. But, worst of all is the realization that all of the work done on civil rights matters in the sixties is unraveling before our very eyes. GOP-controlled state legislatures across the country are passing voter registration laws with the intent to suppress the votes of minorities. One state has passed a law making it illegal to supply water to persons waiting in lines to vote. This was done 4because the GOP still supports the notion that Joe Biden stole the election from Donald Trump thanks to the allegedly fraudulent votes of vast numbers of black voters. Race attacks against Asians are on the rise because of the ranting of some folks that China is responsible for the pandemic that has claimed over 500 thousand Americans, even while claiming the pandemic is a fraud and the death figures attributed to it are a lie.
Gun rights supporters have convinced their multitudes that the government is after their guns - all because there is a call for real background checks for gun purchasers. The recently deposed president worked enough of his followers into a frenzy that there was an armed insurrection on January 6. We are teetering on the brink of a second civil war. The politics of obstruction rule the day in both houses of congress. The GOP still supports the notion that Joe Biden stole the election from Donald Trump despite the conclusion of Trump's own appointed investigators that the election was fair and not fraudulent.
The browning of America is a terrifying thought to the apparently vast numbers of white supremacists suddenly appearing out of the woodwork. That points to some rocky roads in the future. Although I feel bad we seem to have left so much of the race issue left incomplete, I confess I am glad I will not be here to witness the next 40-50 years. I am, however, cautiously optimistic that things will work out for the best.
That is my take on this weeks topic. Be sure to check what the other members of this little blogging group have to say. I'll see y'all next week, same bat time and same bat channel.
First, as with my daughter, as parents we stay with the effort as long and as effectively as we are able. I really hope the CRISPR option becomes available for her, because it is extremely powerful.
ReplyDeleteAnd the current state of America? Oy vey. You described it well.
Each generation wishes to leave s better world for the next generations...but we seem to be falling into a spiralling world of hate and rage and destruction...all arising from a sense of entitlement.
ReplyDeleteSadly, there is not one nation that is happy with the governments that they have elected or who are ruling with brute force!
The fault, dear Brutus, is not in our stars, But in ourselves, that we are underlings.....
The HD is heartbreaking...we all pray that there is soon light at the end of your dark tunnel! Bless you and yours!
ReplyDeleteI'm sorry to hear about your wife and daughter. Huntington's Disease is very nasty. My sister has had Motor Neurone Disease (ALS in the States, I think) for 16 years. She's bedridden because of physical failings but her brain is still 100%.
ReplyDeleteWhat's happening to the USA is both tragic and terrifying. So many people who believe in one conspiracy theory or another and are actively undermining democracy. Things aren't that bad in the UK but the government is getting increasingly authoritarian. A new government report on racism effectively says there is no such thing as racism or even institutional racism and that black people's progress in life is mainly due to individual circumstances and individual effort.
My heart goes out to you and Jamie. I know what you went through with Lynn and have always admired you for the way you had handled it. My best wishes that the new remedy works and quickly brings about a resolution.
ReplyDeleteAbout your country, I better not say anything except to point out that I wish that the so called India experts there would refrain from commenting on what they perceive to be our problems as otherwise, some hotheads here too would start raking up American issues in our parliament which will do no good to either country.