Not Badge of Honor

Throughout my very challenging life, I have received accolades from friends and family about how strong I am, how tough I am, how brave I am, etc. They tell me I’m the strongest person they know. They say this with utmost admiration and intend it surely as a complement. But it is not a badge of honor. I didn’t go into a burning building to rescue anyone; I just somehow struggled through each day when presented with some of the toughest challenges imaginable. The reality was more like 1 foot in front of the other; one day at a time; sometimes, one minute at a time. It was not like I ever had a choice other than to endure or just give up. And they were times I wanted to give up. So it is perplexing that people see this as strength, when it is merely surviving.

Earlier in my life, my motivation was driven by my dream of having a family in the future, then by my need to stay alive for them once they arrived. Maybe it was arrogance that made me think only I could finish the job I started of raising them. I would think, “They are too young to lose their mother.” But why should only I be given that privilege- there are many tragic stories of those who left their children behind due to illness or accidents. Somehow, though, I did survive each challenge, but it wasn’t because of anything I did or didn’t do, other than perhaps vigorously watching and advocating for my care, to ensure mistakes weren’t made (and that was a big part of my survival).

So while I appreciate what people are trying to say when they praise my continued survival, I know it is not a badge of honor or medal of valor. It is simply me, trying to stay alive because I still have more to do on this earth. And no matter how old my boys will be when I die, it will always be too soon.

Another medical challenge . . .

Reliving the horror with a different perspective.

September 9, 2014 is a line known as before and after. That’s when life changed in very profound ways and it took years to find my way to a new normal that I could live with. There’s plenty about that period of time in previous entries so I’m not going to belabor them, but I would say one highlight that stands out from that time was how I wanted to die. In the face of unending and excruciating pain, without hope, with the inability to even envision a future life worth living, it was an appropriate response.

I’ve always been driven in past crises, to stay on this earth for my children. This time was different. My pain was so pervasive and prospects for the future so poor, I couldn’t even consider them. Thinking about that now makes me cry. Although grown, my boys were not ready to lose their mother. There were lessons to be taught and advice to be dispensed.

Fast forward to 2021 to what was to be the final remnant operation from those days. It had been scheduled and canceled a number of times due to Covid and now it was time to get it done. Enjoying a relatively reasonable quality of life, it was very unnerving and took me years to decide to proceed with this final corrective step. Now, children are older, but I have much in my life to give it meaning, relationships that I cherish, important work to be done, and a whole bunch of creative pursuits that I am free to enjoy.

So I approached the surgery with great trepidation because at some point you have to shit or get off the pot, right? Of course in the aftermath, I regret the stability I traded, for what is happening now. Hindsight is always 20-20.

One thing after another proceeded to go wrong, even things that were not part of the surgery and might have happened anyway, but they were still part of the overall challenges. In spite of it all, I was handling things pretty optimistically as is my nature. But now a 3 to 5 day hospital mission has turned into 19 days, and 25 days, then 30. When that last thing went wrong, I reached my limit. I worked on and off all day as I prepared to go in for this procedure that was not part of the deal. As I lay on the table for the preparation, I began to feel claustrophobic. They laid the sterile field over my face. For the first time, I knew what an impending anxiety attack felt like. I warned them to sedate me ASAP or I’d rip everything off and flee the room.

The doctor had explained his approach. It absolutely horrified me in terms of potential risk should any area he was working in come in contact with the still infected areas. One nick of the vein going through that infected area could surely lead to sepsis and death. The fear, this time, was that I was feeling “I want to live. I don’t want to die during this hospital admission. I have too much to do.”

This was not the sentiment I had seven years ago. With one son having surgery himself the next day and my inability to be with him, and my other son embarking on a relationship with a woman in a new apartment; these were things I needed to live for. I needed to live long enough to see my children happy, safe and hopefully with a life partner. I swear motherly tendencies have gotten me through more than one occasion that was not compatible with life.

So I’m out of the woods from that minor procedure at this moment, where there’s still always a chance new infection will show up, and they haven’t resolved all the post up issues either. I still had to live through the day of my son being without his mother at his bedside, which killed me. My husband is bearing the stress of trying to care for me and for his son, and he’ll do his best for sure, but nobody else is his mother. Today will be a difficult day, followed by the days ahead until they resolve the problems and I can go home.

In the midst of my stay, my husband, ever the dependable stalwart suffered chest pain and went to the hospital by ambulance. His heart was checked out and ok, but he has blood clots in his lungs. What could have been calamitous fortunately was addressed in time and he was released after a day and a half with instructions for follow up care.

So grateful he is ok, but worried about the ultimate outcome still.

After a month in the hospital, the transition to home was overwhelming. Expectations of what care we were to supposed to deliver ourselves and lack of proper instruction made it ever more stressful.

But I am grateful for the meals our friends have dropped off as we are just too tired to prepare anything healthy to eat by day’s end. And my energy remains very depleted.

I know this shall pass, but it is bringing back some of the trauma from previous incidents. And it’s making it more difficult to get last it this time. And patience is NOT my superpower.

Dinner with a Side of Life

Now that my sons are both in NYC, a train ride away, I get to see them more often – which is soooo fabulous!

During one of my visits, my eldest had asked for a “Mom & Son” dinner. Thinking he had something he needed to share, I waited with great anticipation of some kind of news (good or bad, I wasn’t sure). So minutes after sitting down to dinner, I asked, “So, what did you want to talk about?” “Life,” he said.

So we talked about life in general, and some specifically. He’ll often say, “Can I get your opinion on (fill in the blank).” I love still feeling needed, in spite of his total independence and capability.

As I contemplate my mortality, I often wonder if I taught my children everything they need to know (I must have, since they are thriving as adults), if I should share some personal stories of mine that preceded their entry into my life (I have shared some of them), and how much about me they should know. I regret not asking my grandparents about their lives as refugees before they died. This is a part of my history I can never reclaim. Since I know life can be fleeting, with something unanticipated happening in an instant, do I owe it to my children to tell them as much about my life and what I know of our ancestors, so they can have more of a history than I did?

I’d love to know what you think and how you have thought about such matters.

One of the Saddest Days of My Life

The loss of people I have loved, loss of my health and other personally painful things, have dominated my life at one time or another. While they left permanent scars, I have been able to move forward with life. I am an eternal optimist, but tempered and humbled by events outside my control.

Yesterday, the country I have loved, through challenges, ups and downs, let me down. And this time it wasn’t just our leadership – it was the people of this country on a scale that makes me worry about its future.

Upon reflection of yesterday’s events, I I feel it was one of the worst days for democracy that I have witnessed in my lifetime. We’ve been challenged by so much in these past four years, but nothing, I mean nothing, could have prepared us for such an appalling uprising from our own countrymen. We’ve been challenged by our foreign enemies, but we’ve seen increasing domestic terrorism on a scale that is truly frightening. We’ve seen such division, stirred by a sitting president, the most powerful person in the free world. Such power, in the wrong hands must never happen again.
We may not love the choices we had, but the mandate to eliminate trump and his ilk was imperative. At the very least, Joe Biden will deliver a kinder message, a call for unity and capable leadership through his choices for his cabinet. And a dose of old fashioned human decency, which is so sorely needed.
I pray I will be able see reunification of these UNITED STATES OF AMERICA in my lifetime. The damage is so severe, our country so broken, I don’t know how long it will take, if ever, to recover the ideals of the American  Dream. It is a sad, sad time in our history.

A Ray of Hope

Everyone these days is reflecting on the last year – possibly one of the worst in our collective memories. The death and destruction of people, families, careers, faith, fortunes and even our democracy have captured the news cycles and laid bare the best and the worst of humankind. Division among families, science vs. conspiracy, re-emergence of White Supremacy, blatant injustice for people of color, children torn from their families, possibly never to be reunited, climate crisis denial, abandonment of our international alliances, exploitation of our natural resources . . . . . It’s enough to make one want to stay in bed with the covers pulled over our heads.

But we have also seen the best in people: neighbors helping neighbors, healthcare and front line workers sacrificing their personal safety and that of their families, to help those falling ill with covid. The physical and emotional toll cannot be underestimated. They worked tirelessly, often without the necessary protective gear they needed for their own safety. There is no way to repay them or remove the trauma this experience has left them with. There will be those so wounded by it that they will change careers. Many have fallen ill themselves, brought covid back to their loved ones, and sadly, some have died for the cause.

This begs the question: Why has the division in our people widened when a crisis like this usually unites us as a nation? Why is our understanding of events and needs so polarized? When did people stop believing in the advancement of science and scientific knowledge? When did we question the need for unity on the facts in order to protect ourselves and our neighbors? I daresay it began as a political battle and mushroomed from there. But I will stop at this, lest this become a diatribe on political affairs. I can save that for another time.

A new year usually brings collective optimism – we like to leave painful memories behind and dream of new opportunities. This is the human spirit at its best. This year we are going into 2021 with renewed, but cautious hope, because 2020 left a wide swath of pain in its wake.

Let us all commit to staying the course, continuing to mask and to accept a vaccine when offered, or this pandemic will never leave us. We can do this. We have survived before and we shall persevere . . . together.

Resilience

Being the survivor that I am, and seeing others struggle so much with life, I have long been curious about the qualities that make some more resilient. I’ve been unable to find a lot about it in the literature. If I was just starting on my master’s degree now, I might pick up on this area of study.

Today, a TED talk came to my inbox. It was given by someone who specializes in the subject, and consults on resilience, teaching strategies in a variety of settings. She also experienced one of the most difficult challenges herself – the loss of a child. She had been offered tremendous support by the community as well as from professionals. But she didn’t find it helpful.

As a researcher, she decided to test her principles on herself, as the ultimate test of how helpful they are in the face of such pain and grief. The strategies helped her and she shares them in this talk. They are simple concepts, even though not easy to employ, but are accessible to anyone. They are:

1. Accept that suffering is part of life, and that there are things we are powerless to change.

2. Find the good. Look for what you HAVE, not what you lost. Acknowledge what you are grateful for.

3. Ask if your behaviors help or hurt you and decide accordingly, what to do and how to act.

These principles are simplified for the sake of this post. Listening to her embellish the principles with the context is much richer. Consider giving her talk a listen.

An Empath’s Struggle

As I caught up on my reading of last Sunday’s NY Times, I found it excrutiatingly hard to read two articles about some of the Covid-related struggles: one here in the US and one in Columbia. They were so difficult, I cried through them both. I was tempted to stop reading, realizing it was impinging on my already fragile mood, then thought, “How dare I even compare their suffering to mine?” as I sit in my air conditioned, comfortable home, with three meals per day and safety from covid dependent only on my own decisions.

Intellectually, I know I am not the cause of, nor can I necessarily help in these cases, but it doesn’t help me detach myself.

In one article, a NY Times reporter visited Columbia to see the conditions there. Columbia has, over the past 2 decades, managed to secure some security for the poorest of the poor. Families were lifted out of dire poverty to run small businesses, they were able to educate their children and live in decent homes. Then covid struck and decades of progress was literally and figuratively reduced to rubble. When families were forced to move to encampments; the government shut them down as they were illegal. They were forced to be out in the open, with covid raging. Many who had escaped from Venezuela to Columbia fled back, most certainly to no better circumstances – and maybe worse. As a parent, it would be bad enough for me to suffer these conditions, but watching my children suffer as well would be excruciaing. I had to force myself to keep reading – that’s how painful it was.

The other story was one about helplessness, which is what I felt while reading the first story. It involved the suicide of an emergency doctor who literally had a mental breakdown due to her inability to save so many in the NYC outbreak that left everyone ill-prepared in the weeks leading up to the devastation. She had suffered through Covid herself, then came back to work in spite of her still fragile condition. The article speculates that because we know so little about lasting neurological effects, her coping mechanisms could have been impacted by the virus.

If there is anything to be gleaned from these articles, it is to raise our awareness of relative blessings, however hard life is for us now, but to strive not to feel guilty about what we CAN’T do. It is to put things in perspective.

If you feel inconvenienced that you are asked to wear a mask, refrain from risky social activities, halt travel and refrain from seeing family and friends, remember it is for the collective safety of everyone – especially those most at risk.

For an empath, not feeling the pain is easier said than done.

Get Out and VOTE!

Where to begin . . . . . (WARNING: you may not want to read this if you support trump)

As if things couldn’t get worse . . . . . they did . . . . and it’s not over yet . . . .

We entered 2020 with hope that a new year would wipe clean the ills of the past year. With the country already suffering the reversals of so many protections for citizens, climate change effects lurking around every corner, water and air pollution rules abandoned, healthcare being taken from many who finally got it, poverty increasing, our leadership on the world stage in tatters, yet some were extolling the performance of the stock market as a barometer of our country’s health.

I have never used my blog to speak of political matters, though heaven knows my FB page is full of it and it is not pretty. And while I don’t intend to make this post about politics, it is impossible to divorce it from the backdrop of what follows. 

Most of us knew the trump era would signal change. How much and how harmful, no one could ever have envisioned. Not only were all consumer protections reversed (as a matter of intentional devastation) but much of it took place in the shadows of even more sensational news. Quietly, deliberately and in many cases, illegally. 

The swamp was filled with even more vile characters; it was not cleaned as he promised. The rich fellows of the administration have prospered, some illegally, using insider information obtained in the course of performing their government duties. And it increased the gap between the have and the have nots.

The three branches of government, envisioned by the creators of the constitution to prevent government overreach, have come under a dictator-like, dare I say cult-like, influence. When they act in lockstep, not checking each other, we are doomed to become a fascist nation. Those with influential pocketbooks are running the country with the outsized weight of their money and lobbies. 

Nationalism has devastated our reputation as a world leader. Our president is mocked abroad by world leaders and citizens who express pity for what is happening to our great country. Withdrawing from alliances around the world puts us at tremendous risk should there be war. We would be left to our own defenses.

The attack on science and truth, all of which are not subject to opinion, run rampant. Trump supporters ignore at their peril, advice from scientists, favoring that of an unhinged real estate investor with dubious claims that he knows more than anyone about everything. How does anyone buy these claims? How could ANYONE, never mind this bloated egotist crazy person, know more than everyone in their fields of expertise? Any sensible person would question the reality of such a claim. Trump’s lies spew forth hourly, without hesitation. When confronted with facts that counter those lies, including video of him saying these things, or photographic evidence proving he has met or knows dubious characters, he claims it fake! I believe my eyes and ears over talk of conspiratorial spin.

We have out of control hypocrisy in talk and action. Trump must end chain migration, unless it is for his wife’s family members. He abhors undocumented workers, who largely keep the country humming, unless he needs cheap labor at his clubs. He wants products to be made only in America unless it is his campaign paraphernalia or his daughter’s merchandise. The list could go on for pages.

The man is incapable of any humanity in the many crises that have befallen the United States under his watch. Children separated, many permanently, from their families. Inhumane conditions, rape and deaths in the border detention centers. People in states he “doesn’t like” living with polluted waters, or without electricity after hurricane devastation – for years. Incapable of consoling the many who have lost loved ones from the “fake” corona virus, the families of children from gun violence in their schools and citizens of color gunned down by overzealous police and military. Not a word. Only congratulations to himself for imagined “great” numbers and his popularity. He argues any negative news and sinking polls, to the point of surrounding himself only with yes men and women who agree with anything he says, and he boots those who disagree with him, even in the face of evidence.

He has been enabled by his party to lie, cheat, steal, make illegal executive orders and make a mockery of our constitution. He makes pronouncements that belie his values. He is no more religious or pious than the street criminal he is – only with money and power. It is reported his advisors privately think he has lost it and call him names behind the scenes yet grovel at his feet in public. I wonder how they sleep at night.

He is inarticulate and rambles off script any messaging prepared for him by his staff. His vocabulary doesn’t exceed the average 6^th grader (I may be generous in this statement). His oratories are filled with “the best,” “the highest,” “the most ever in history,” “I know more than anyone in the history of man. . .” He can’t focus on the issues at hand, he slurs his speech, he has awkward, stiff mannerisms, and he never smiles unless it is a clearly forced smile for the camera. He looks as miserable as he appears to us. His skin is so thin he hurls insults to individuals and world leaders alike. No one is immune. What world leader has EVER done this? Not even heads of fascist states act like he does! And his minions applaud him. I don’t know who is more frightening – trump, his administration, the republican party or his followers, though all are culpable.

He lacks any modicum of leadership by example. His best experts say, “Wear a mask – to protect yourself and to protect others.” But he exempts himself. To see him at a mask factory, surrounded by workers with masks would be funny if it weren’t alarming. To tell the country he is taking hydroxychloroquine when the scientific community has stated it is unproven and even dangerous is unconscionable. (The FDA just removed temporary approval of the use of the drug to treat Covid.) To speak of light and bleach, and have people actually try to ingest these poisons, is lunacy. When he said Floyd would be happy with the economy, I lost my shit altogether! I was moving around the house mumbling like a crazy woman! And now, starting up his campaign rallies in tight quarters, not requiring masks, enforcing no social distancing AND requiring people to sign waivers not to sue the campaign if they get Covid?  The saddest thing is that innocents – not even at the rallies – will get sick and some will die when these people spread the virus in their communities with impunity. Further, asking healthcare workers, already so burnt out (if they haven’t themselves been victims already of Covid) to pick up the pieces is beyond any sense of moral decency.

TRUMP IS OUT OF CONTROL AND NO ONE IS STOPPING HIM!

But there is hope. My hope is YOU. You must vote this dangerous psychopath out of office. November can’t come soon enough.

When Faith is Stronger Than Despair

Faith has always been elusive to me. I need to see, hear, feel, touch or taste something, to know it exists. I question why a good God would burden good people and allow the wicked and evil to live freely and happily. During some of my trials, the faithful have said to me, “God only gives us what we can handle.” It was not comforting. It made me angry. After the many, many tragedies and challenges I have faced in my life, I have wondered, “Why isn’t it someone else’s turn?” (Not that I would wish my experiences on anyone else, but just saying . . . .) And why is it fair that any one person should be created so strong as to endure more suffering than ten others?

A friend’s daughter was happily and healthily pregnant; the grandparents-to-be, ecstatic to be welcoming their first grandchild. Until, at eight months, at the expectant mother’s exam, something appeared to be wrong with the baby and she was delivered early by C-section. Having been deprived of oxygen, the doctors were not sure the baby would be OK. She was hooked into life support systems until she could have a full neurological evaluation.

It was bad news. The baby’s brain was damaged and her basic autonomic body actions, like breathing, digestion, heartbeat, could not function without artificial support. There was nothing to be done. The doctors allowed the family to gather and meet and hold the 6-day old child for the first and last time.

When I heard the news, I felt like I was just punched in the stomach. This family, so strong in their faith being dealt this hand? How? Why? The parents made a FB post with smiling photos of themselves with their baby, looking like any new parents, the baby dressed like any adorable newborn – a few pictures with equipment still supporting her life, and a final one of the beautiful baby girl, swaddled in a lovely bunting with matching head scarf, sleeping peacefully.

Once again, I call my lack of faith into question. What God would allow this to happen to the most faithful of families? But the mother’s post ended with these words, “But as hard as it may be, we will hold on to our Faith that God is in control, He is with us, He has a plan, and everything happens for a reason.” Now that, is faith. 

I Was Holding it Together . . Until I Wasn’t

How dare I fall apart? I am blessed beyond deserving it. My family is OK. My friends are OK. I knew only one family who had the virus and fortunately have recovered. Until this week. . . .

First, we lost our goldendoodle, Simba. After watching him decline with cancer, we made the difficult choice to put him down, foregoing the worst of the inevitable ending. Then we heard a friend’s mother died, and she is grieving alone. No funeral, no family to gather, no shiva, no closure. Then I broke when I learned my beloved surgeon got the coronavirus. The man who was invincible, who did surgeries no other surgeon would take on, working for shifts up to 28 hours, mending those who no one else could mend, including me.

He was being feted at a weekly hospital concert, recovering after weeks of being on a ventilator and emerging too weak to walk; wheeled into the lobby to join his colleagues in singing “A Whole New World,” and telling the story breathlessly. Humble as always.

I’ve been crying since I heard of his battle. Tears of gratitude that he survived, gratitude for his care, and frightened for his future. We don’t yet know what the virus leaves in its wake. If he is unable to continue his work, so many will be deprived of his rare talents and courage to tackle the cases that only he will take – and largely succeed at, putting back together us broken souls. I guess when it comes down to it, even this giant of a man, a world renowned and dedicated surgeon is after all, human. And this virus spares no one, especially those in the line of fire. 

My plea to my friends is not to be foolish. We are all anxious to return to life “as it was.” But that may not be possible for a long while, if we are to contain this scourge. I am missing my friends and family immensely, yet continuing to distance myself from physical contact. No distance is safe enough when it comes to this virus, so I’m only doing necessary outings. Partially to honor my doctor, who worked so hard to give me my life back. I will I not risk throwing it away after that battle. And for my family. Any one of us engaging in unsafe behavior puts all three of us at risk. 

I implore you – all who I love. Do not take this threat lightly. I am out of tears and am afraid I may not have any left to cry for you.