I’m Not Scary; Are You?

July 13th, 2017 Posted by Susan's Musings 68 comments

There is a blog I regularly read because doing so makes me a better person. In it, a mother details with great honesty her emotions and experiences as she and her husband raise a son with serious disabilities and a, thankfully, healthy daughter.

She and I have never met, yet she is afraid of me and my family. Afraid of our support for repealing Obamacare, of our support for President Trump and of our conservative leanings.

I have two children in the medical profession. They talk of their emotions and experiences as they are hindered and frustrated by a bloated, bureaucratic and unsustainable system. They talk of their emotions and experiences as they try to help seriously ill patients and are instead forced to tend to those abusing the system, unnecessarily consuming tens of thousands of dollars and hours of human resources. They  talk of their emotions and experiences at caring for patients who act self-destructively, thus counteracting the help they have just been given, after monopolizing resources that, subsequently, were not available for others. My children have never met the woman whose blog I read. They are not afraid of her, but they see her voting patterns and liberal leanings as harmful to them and those for whom they care.

It is not a far-fetched scenario that one of my children might meet this woman’s son in an emergency room or intensive care unit. She and they would unite in doing their best for this boy with skill and compassion, maybe even with prayer.  Neither would know the politics of the other and each would be touched by the competency and kindness of the other as maternal love and medical professionalism worked together.

While this woman envisions cruel and greedy conservatives snatching away the social services that allow her family to better function, my family and I envision liberal policies leading to a world where a boy born with the disabilities and need for expensive medical care such as this woman’s son had at birth, being left to die. It is a fact of life that resources are limited and while a child with the name of Trump, Clinton or Obama will get helped, most everyday people’s children won’t.

My family and I worry about men like Peter Singer who as Professor of Bioethics at Princeton University is training the next generation of those who would make decisions in a single-payer health system. He describes himself as a ‘hedonistic utilitarian’ and is a believer in what is euphemistically called ‘abortion after birth’ for those born with severe handicaps. Surely my blog writer recoils from his philosophy. Does she get scared when she reads of the Charlie Gard case in England, where parents’ desires are being overruled by impersonal pencil-pushers? Yet, she is afraid of the votes of many of those who believe that human life is sacred.

Politics is a corrupting profession. There are many Democrats and Republicans in Congress who care more for their own power trips and fortune-building than they do for the citizens they purport to serve. Other politicians are well-meaning, but they quickly get isolated from the real world and live in an unreal bubble as they make choices that affect the very real world of the rest of us. Others who face the sad reality of a largely ignorant populace with a short attention span know that they will not get re-elected for doing what they believe to be the right thing. None, even if they possess a brilliant solution, have the power (unless they use illegal and unethical means) to force their colleagues to go along with their own ideas.

There is no neat and tidy answer to the health-care crisis in this country. There is no magic wand that will provide unlimited dollars and resources to those that need them and make all citizens upright and honest so only those truly in need apply for those dollars and resources. There is no fairy dust that will make every provider of medical help and government bureaucrat responsible and hard-working.

The less capable we are of facing hard facts, the reality of unintended consequences and the wide range of morality and ethics that govern a nation of disparate individuals, the more polarized and less problem-solving we become. We need to recognize that those who think differently than us may well be motivated by the same compassion that motivates us, yet their experiences lead them to see different solutions than we see. I learn so much from the blog posts I read, penned by a woman I have never met, but who I admire. I wish she didn’t see me as the threat to her family’s well-being that I truly am not.

 

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68 comments

Ginny Mayne says:

Well said Susan nothing to add…..I appreciate your weekly commentary’s……

Susan Lapin says:

Thanks, Ginny.

Wilanna Pier says:

My husband and I had a daughter who had multiple handicaps, including being non-verbal. She passed away due to cancer the night before her 41st birthday. She was an Angel, a message from God to our hearts and lives that taught us many things. She was our pride and joy, and brought love and light to everyone that knew or met her. We also were foster parents for children with special needs! Folk need to realize these are very special Angels sent into our world to sacrifice their lives for our many spiritual and material benefits, but of course as you say, many cannot comprehend such. Experience is our best teacher!

Susan Lapin says:

Wilanna, you and your husband must be special people. Once we do down the road of deciding whose life is “worth living” – a road we have already stepped onto – we sacrifice our own humanity and reverence for life.

Randy R. Werner says:

As always, your kindness and compassion are so very apparent. I truly appreciate your thoughtful response that will help me explain my reasons for changing Obamacare to those who consider me a callous, hard-hearted woman.

Susan Lapin says:

As usual, Randy, I get frustrated that there doesn’t seem to be a Republican spokesman who can articulate the message.

Valerie says:

You are very wise. I’m sharing this on facebook.

Susan Lapin says:

I appreciate that, Valerie. I’d love to ‘speak’ to more people with my Musings.

Jean says:

I pity the woman who believes that social services is allowing her family to function better, because there will come a day when the government she has come to rely on will force her to make some appallingly difficult choices.

I work with a private firm that administers funds for Washington State’s DSHS. My role is to assist people who receive a stipend through one government program to care for their handicapped child or elderly parent. I have had to tell parent providers that their child is a budget line item and that the state determines how many hours of care he or she requires and will pay for. Anything beyond that is on the parent. I had a discussion with another gentleman that left me dumbfounded. The state – along with SEIU (union that “represents” the caregivers) – implemented a series of pay increases for providers. This gentleman was begging me to allow him not to get a pay increase. His reason? He was also receiving a huge housing subsidy and would lose that if his pay went up. He would be earning what the union deemed appropriate for HIM, but would end up being homeless (along with the 90 year old mother he was caring for) because housing costs in Seattle are sky-high. The program that was perceived initially to be a great blessing to caregivers has become a noose around their necks. And that’s the reality of any government program – you abdicate your freedom and self-determination for the illusion of security.

Susan Lapin says:

What a terrifying story, Jean. We too know people who do not go to work or increase their hours because they will end up with less, not more. Government is ill-suited for what it does.

H- says:

Dear mrs Lapin,

I will need you to sign a book deal. And might I add that I am really mad at the fact that I didn’t know you all these years? You are an amazing writer. PLEASE. Write a book. You are such a strong feminine intelligent amazing person! Reading YOUR posts makes me a better person.

Kind regards,
H-

Susan Lapin says:

What a sweet thing to say. Thank you.

Paulette says:

I agree. We need to share this wisdom, these truths, and you have a very kind and concise way of delivering the message. I’d be first in line to buy that book Susan!

Susan Lapin says:

Hmmm. I will have to start thinking in that direction.

Wonderfully well defined Susan! It is so encouraging to think that there are such people as yourselves in this stupefied world who can actually think things through! There is a glimmer of hope in folks like yourselves! Good on you! I completely agree! Keep on helping others like myself to really grasp truth and express it!

Susan Lapin says:

I really think that we have created the divides among most of us. There are different values that cannot be bridged, but I do think that the Democrat Party’s fear is that their voters will talk to Republicans and discover mutual ground which is why they paint us as evil.

Carmine says:

My vet charged $100 for an x-ray for an animal. What does an x-ray cost for a human?

Susan Lapin says:

The prices have little to do with the cost – this is one of those areas that can be worked on. Most doctors’ malpractice insurance means that they have to charge unreasonable prices, for example. Everything is jacked up because of government involvement where it shouldn’t be and catering to lobbying groups which harm people but deliver votes.

Ildiko says:

Dear Susan, thank you for your post, it’s been such a timely piece of writing for me! I’ve just made up my mind to start a blog in order to help people talk about and understand similar issues concerning our own country’s politics (Hungary). Here, people are extremely divided in their opinions on, for example, antisemitism versus George Soros, or “gay rights” and inclusion versus preserving the values of family and marriage – just like they seem to be in the US. Sometimes even our Jewish communities get confused (especially in the so-called “neologue” or more liberal branch of Judaism), which makes me really sad. Your point here makes it really vivid how easy it is to err in one’s understanding of reality and that maybe such errors can only be avoided if one is open to true discussion with people with different perspectives. My hope is that an approach of respect and appreciation, like yours, will help me reach this goal. May I ask you to allow me to cite this post of yours in one of my next blog posts as an example?

Susan Lapin says:

Ildiko, I’d be honored if my blog can be helpful. What interesting issues you are facing, some unique to Hungary and others universal.

Ben McFie says:

Thank you for writing this wonderful piece. It can be exasperating to reason with people who see you as “threat” even though you probably want the same, if not more well-being, health and happiness available to all.

Susan Lapin says:

Knowing your family, Ben, makes the idea of anyone seeing you as a threat laughable.

Laurie says:

I don’t know how it could have been said any better, Susan. Thank you. Laurie Magers

Susan Lapin says:

I’m honored you think so, Laurie.

Jan says:

So glad to know that I am not alone in my thinking about government healthcare and minimum wage law.

Susan Lapin says:

You’re certainly not alone, Jan. Have you read Arthur C. Brook’s books like, Who Really Cares? It’s worth giving to an open-minded person who thinks that Democrats are the caring Party.

john c willsey says:

Susan : You nailed it ! my observation is that liberals’/progressives are adults locked in a post adolescent parent child rebellion ,with the gov’t standing in as parent . They have no intention of accepting adult responsibility .They are offended by the suggestion that they should be responsible . Even when you are truly acting in the best interest of all concerned they will accuse you of being greedy heartless etc. if you deny their request for anything they want . their motto is you have it . Give it to me. The mistake conservative’s /adult’s make is that , if you are attempting to deal with them as logical responsible adults’ politically , religiously or morally. you will always lose to their ” emotion based logic ? “/arguments . The only solution is to deal with them phillsophicaly as kind parents .( not that it will work when the children in adult body’s are elected to office , there probably is no simple solution. ) my thought,s on this issue came from watching “My Rabbi D Lapin” And Susan. ( my loving wife admire’s you’ Susan as do I ) . The Rabbi’s comments on on ancient JEWISH WISDOM , that children meet adult responsibility before being granted adult privilege is ” the way it should be”. is excellent advise . However ,in our affluent society ,we indulged our adolescence with adult privilege void of any enforcing of responsibility, and we see the consequence of this in our current political /economic/social situation . If the wisdom in the
” Tanak ” was observed as it should be most of these problems would not exist . respectfully john & jane willsey p.s. i was channel flipping when i encountered ” THE RABBI ” and
hard him say the ” for solution to most problem,s read the owners manual ! ” hooked me and have watched Ancient Jewish Wisdom every day that i can since . The information that is contained in the Hebrew language is enlightening and essential to understanding the depth of knowledge that is contained the words in scripture. A book by Dr frank seekins ” Hebrew word picture’s ” has been very helpful in advancing my understanding of HEBREW . You both continue to help me better understand the true meaning of the scriptures.and be a better person Thank You ! and may G-D bless you and your’s

Susan Lapin says:

John, while I appreciate your compliments, I don’t think you are being fair. I do understand a hard-working parent’s concern that they cannot possibly deal with a special-needs child without help and outside support. Their concern should, first and foremost, be for their own child. But universal policies can’t be built on that basis.
I hope you’ve taken a look at our two books on Hebrew – Buried Treasure and our children’s book Aleph-Bet. Thanks for sharing some of your story as to “how we met.”

Joe says:

This is one of the most powerful things I have ever read, outside of Scripture.

Susan Lapin says:

Glad you liked it, Joe, but I can recommend many good things to read.

Shawn says:

Dear Mrs Susan,
Thank you for speaking out in such truth and grace. Many of us feel deeply in agreement with you. However we are not sufficiently equipped to find the words to express ourselves on these matters of such importantance. I really appreciate you and your husband sharing Ancient Jewish Wisdom with the world. As a Christian, I marvel at how uneducated I am and what wonderful insight I receive from your blogs podcasts, and tv program. Thank you for your courage to speak out. Bless you!

Susan Lapin says:

Shawn, I heard Sen. Rand Paul, who opposes the new Republican bill, speak and while his points were good and true, they focused on the money. Yet, he never made the connection that running out of money means that people will suffer. We do have to be able to speak in ways that good people who believe the Democrat trop of greedy Republicans can see the fallacy of that claim.

Dawyn says:

It is so frustrating. My daughter has numerous medical issues and is on state insurance. I can’t get people to comprehend that having an insurance card is not the same thing as having medical care.

Susan Lapin says:

What an important thing you’re saying! Medical care in theory does not mean medical care. One of my daughters had a home birth after Obamacare came in – not because of her own desires but because she could not find a doctor closer than an hour and a half away. They had all dropped out of her insurance plan.

Edward Rubinstein says:

Hello Susan,

You commentary elucidates the major problem in this country: We on the right will listen, read, try to understand those on the left. Those on the left want nothing to do with us on the right.

The best (but not perfect) way to “solve” health care is for the market to take over. Some people will, unfortunately, be hurt. No system can serve everyone. But the market will always serve the most people for the fairest price. Rabbi Lapin speaks of this often.

Susan Lapin says:

Edward, on this issue, I don’t think it is only a matter of fair market. It is also a matter of corruption, but that corruption comes from the government catering to medical and pharmaceutical groups that provide money for elections and votes. The swamp when it comes to medical, legal and insurance issues is extremely deep.

LJ says:

Milton and Rose Friedman would likely have enjoyed many of your blog topics, especially this one. I worked for a collection agency out of high school, earning a degree later in life.

I helped with medical collection accounts and more; about a year later I was a medical billing professional for a Harvard educated, pulmonary disease physician in Southern California. I learned that there was a lot of fraud on both sides of the spectrum, some hospitals would double bill their elderly patients and some patients fraudulently received payments from the insurance companies. Medicaid (CA State) and Medicare were a mess in the late 1980s, and they’ve not recovered! Our system has been run inefficiently for far too long.

Economists know that there are optimal or sub-optimal outcomes from the implementation of public policies, and practical economic models can be used to estimate the short-term or long-term benefits and costs of production. Milton Friedman often pointed out the outrageous costs associated with giving away medical benefits to the “poor and needy.”

People must beware of bad legislation in the medical industry. Obamacare ought to be repealed. We also ought to rid ourselves of the employer provided benefits that have been a big part of the insurance/tax provider mess.

Many local medical providers where I live offer concierge or boutique medical care to patients who wish to pay for it annually. Some doctors also “opt-out” of our system completely. These providers were upset that they could not deliver the necessary care to their patients due to the flaws of the “system.” The drawback is that they are unable to refer their patients for many services, so these doctors suggest that the patient have a primary care provider too.

Susan, I hope that your son and daughter will eventually be able to deliver healthcare in a more functional system. You’re rational thoughts on this topic temper your emotional thoughts about it well.

Susan Lapin says:

Yours are the kind of experiences that need to be discussed, as are those of my children. Real stories and statistics need to be heard and parsed.

LJ says:

Perhaps I should send my comments above to Senator Ted Cruz.

Timothy C Mauch says:

Great piece, Susan! The only thing I would add is purely religious: The one who has the pixy dust is the Messiah, and that He will distribute it (metaphorically) when he comes (the first time, to you, the second time, to me. I don’t quibble.). If He doesn’t come in my lifetime (we’ve been waiting thousands of years, already), I know that He will, eventually, when it suits Him.

Susan Lapin says:

Good point, Timothy, though if you want to quibble, the Messiah is only a messenger and I’m pretty sure he’s not going to be armed with pixie dust. 🙂

Joyce R. says:

I agree wholeheartedly with your observations here. I remember talking to some of my own health care providers when Obamacare was under consideration. At that time they seemed divided over whether it was a good idea. Only one seemed really gung ho. I worked for the government and was vehemently against. Why? I have seen very few things the government couldn’t mismanage royally.

Today, even though I have never yet been subject to Obamacare, I am even more opposed to it because of the damage it has done to the majority of Americans who are not covered by employer health care plans. What I am blown away by is the Republicans in Congress failure to live up to their promise simply to repeal it. No one, including the poorest person on the street, will die because they are denied care if it is repealed.

At the same time, I think of two seriously disabled children. One is Charlie Gard. Because of Britain’s single payer health care system AND an obscure provision in the UN Convention on the Rights of the Child, he may very well be condemned to having life support withdrawn without his parents’ consent even though they have raised $1.8 million to bring him to the US for treatment.

The other little boy is the son of a young couple I know. “Tommy” lives in the United States, which has not signed onto the UN Convention on the Rights of the Child. Tommy was diagnosed with a serious disease when he was six months old. His prognosis was not good. He was not expected to make it to two years old. By God’s grace, he is now three and a half years old. Better yet, the Big Pharma that everyone loves to hate has developed a drug to help his body produce a gene needed to correct his medical problem. Tommy began taking this drug a few months ago and is already making gains. The allegedly nasty Big Pharma company is even working with Tommy’s parents to pay for the drugs he needs because they are incredibly expensive. Tommy’s parents are concerned that repeal of Obamacare may affect their ability to get insurance for Tommy because of his prior existing condition. Be that as it may, a couple things seem clear. Despite whatever drawbacks there are to Obamacare, for Tommy’s family it has been a blessing. Moreover, Tommy was blessed to be born in the US, which is not a signatory to the UN Convention on the Rights of the Child and, regardless of the drawbacks of Obamacare, is not yet a single payer health care system. Let us work to ensure we never become one.

Susan Lapin says:

Joyce, how wonderful that “Tommy” is doing well. And it is lovely to hear of the drug company stepping forward and being generous. Of course, Obamacare is helping some people as it hurts others. That’s why the “thousands will die” is a fake argument. Both sides have plusses and minuses. The question is maximizing the first and minimizing the second. I do not think the Republican bill takes away pre-existing conditions, though I do think it is still too “in the box” rather than promoting the national conversation that really needs to take place.

Lawrence T. says:

Brilliant! Absolutely Brilliant!!! Well said.
There is to much to say and to little space/time on the subject. But I am STUNNED by the amount of people today who think a nameless/faceless bureaucrat 3000 miles away is more concerned about your plight in life than YOU are.
Also, a lot of this attitude comes from the reality that to many have no consequences for their actions. “If I abuse my body, no worries, someone else will take care of me and someone else will pay for it!”
This attitude also stems from the fact that we ALL call it “government” money. There’s no such thing as “government money”! There is ONLY “taxpayer” money. Bob and Jane down the street are who are footing the bill. If this woman (and people in general) would realize that it’s actually her NEIGHBORS who are paying the bill (NOT Senator Foghorn-Leghorn) she, and others, MAY develop a different attitude. But as long as they think the “government” is paying,,,,,,,,,,

Susan Lapin says:

Lawrence, one of the things that happens as government programs expand is that those in real need get less and less as those milking the system (even legally) take as much as they can. This happens in education, health, welfare etc. Too frequently, what sounds compassionate ends up hurting those it purports to help when government gets overly involved.

Lynn Perrizo says:

Great musing Susan. I saw a quote the other day from the book, “The Denial of Death” by Ernest Becker that has stuck in my head. He contends, “…that the whole western world is a gigantic playground to distract us from ever facing the fact that we will die.” I’m not sure I want to read his book but thought that statement to be so true. We all are going to die someday. For those who believe that there is nothing beyond this life I guess they would be anxious about death and work to avoid it. But then again our society also pushes abortion. What a schizophrenic world we live in!

Susan Lapin says:

Completely schizophrenic on so many issues, Lynn. And yes, we do have a discomfort with death today where it used to be a natural part of life.

LJ says:

Lynn & Susan, I’m completely reminded of the movie, “Murder by Death.” It’s a crazy and silly film, but it reminds me of many real life encounters!

PS I love to read everyone’s comments after reading this blog, Susan! I like to do the same on all of this fine website as well.

Ruth says:

I am treating for lyme’s disease since August 2014 with a Lyme’s disease specialist. Now, because of the complicated healthcare system, he cannot take on new patients that are on Medicare with lyme’s disease because of the many restrictions. If I did not find out about this specialist, I might be in a nursing home, or dead. I was falling on the street and did not know why, my ear would feel like it would explode and nothing would touch it. By the time I got to an ear specialist the pain would go away. It comes and goes every 3 weeks–this specialist sent my blood work to Igenix in another state for a 21 day incubation period and that’s how he found it. Today, I am still on an antibiotic and some herbs to help, but I am able to work full time and have an active life. People are scared of the future. Most don’t read a Bible. Thank you for your wisdom.

Susan Lapin says:

I am glad that you found the help you needed, Ruth. Doctor’s being forced to opt out and choosing to opt out because of government mismanagement are a major and real problem. Having a right to health care doesn’t mean you can access it. You can’t “keep your doctor” when they stop practicing.

Tony Corker says:

Ditto to your article and all your and your readers comments.

Brian Tucker says:

I am not sure that there is a one size fits all solution to health care. And I’m sure that there were inequities in the market driven system we had before. Anyone on Medicare or Medicade can site times when a treatment had to be postponed or terminated. But think about the 11 month old baby in the UK. Does anyone want some uncaring government bureaucrat deciding who should live or who should die? (And I believe this is where we are headed). This child may or may not live. That is in God’s hands. But if it was that woman’s child wouldn’t she fight tooth and nail to give him every chance?

Susan Lapin says:

Brian, you are right that there isn’t a perfect system – we are humans and we don’t hit perfection. There certainly were inequities and I’m all for tweaks. But Obamacare was a massive operation that has helped some and caused harm to many others. The final line is as you say – we have less control over our own decisions than we used to and I for one don’t want to go further down that path.

Craig says:

Very nicely written and a very important and powerful message! There’s a lot of causes for this cultural dilemma we’re in, but I believe one of the causes (truthfully it’s probably a secondary cause, or a symptom that created another problem) is the dreadful lack of critical thinking. As I remember my school days in a small town public school-and a good one-I place a lot of responsibility on the failure to teach this skill. So, I homeschool and I see many others addressing the situation in other ways.
A little critical thinking, healthy debate and true concern for others would go a long way.

Susan Lapin says:

Craig, you highlighted one of the main reasons we homeschooled as well. We did a lot of critical thinking and looking at past conflicts from source documents to see arguments from both sides. I wish we had done more logic as well.

Jean Hingle says:

Susan, I totally agree.

Susan Lapin says:

Jean, the idea that in solving most problems in the U.S. it’s the good people vs. the bad people is sophomoric, but many people believe it.

Lora says:

So many personal issues addressed here, too much for me to discuss. However, the thing that leaps first to mind is my deep appreciation for the effort you make to say the things that need to be said, and in humane ways that make sense and are aligned with truth. I sure appreciate coming here and reading your musings in ways I don’t get when I visit many other sites. Thank you, thank you, thank you for being who you are. God bless.

Susan Lapin says:

I intensely dislike the way our culture moves us to say things in extreme and simplistic ways. For many people that is their sole source of news, or even if they read “in-depth” articles, they are unbalanced propaganda rather than reporting.

Judy says:

Thank you for a well-written, well-thought out post. I confess this is a hot button for me. When Obamacare first came out I didn’t know a single doctor that supported it, not one; they were either resigned or retired. As I listen to those who benefit from Obamacare complain about losing it I want to scream. Because of Obamacare, I lost my career in the medical industry; I lost my doctor because he couldn’t afford to do his job due to the regulations and restrictions; and first my health insurance doubled and then I lost it altogether. I had catastrophic, for years, because it was all I needed, not because I’m in great health but because I don’t respond normally to antibiotics or anesthesia. I had it in case I landed in the hospital. Now, I have nothing and will be penalized with a tax because I can’t afford insurance. I watch others abuse the system and know how it’s done. I can’t do it and live with myself. I’m astounding by the number of usually intelligent people who don’t see that health insurance and health care are not the same thing and that socialized/one-payer health “care” is NOT free. I struggle with the anger and pray to let it go; I don’t anticipate the problem improving. Thank you for your sane and compassionate perspective, and thank you for letting me be heard.

Susan Lapin says:

Judy, I didn’t even mention the waste of my children’s time that could be used to treat patients but instead goes to filling out an insane amount of government ‘paperwork.’ I, too, know doctors who retired rather than deal with the new system and people whose premiums skyrocketed as they lost their providers.

Martha says:

Oh Susan, my friend. You already know I’m your biggest fan – (hey I’m nearing 6 feet tall). I love the way you take issues and just dissect and put them out so plainly and succinctly. I agree – a book is in order!

As I scrolled through the comments, I thought about Jericho. How bout we send God’s people around the problem 7 times, blow the trumpets, knock the walls down and go in and start all over! Wonder why our “Commander” isn’t knocking out the enemy? Oh, I know – because as any good parent knows, the kiddos learn best when allowed to work the solutions themselves to the problems they’ve created! Oh what a tangled web we weave when first we let apathy take over and run things! From the perfect world God created and gave us to make better to this … words fail! Thank you for echoing a wake up call that is resounding across our land. God help us to heed the warnings and work together to turn this “battleship” around and start sailing in the right direction!

Susan Lapin says:

Martha, I do think a return of real debate is a crucial first step, including debate as to whether we are a nation of people “endowed by our Creator…”

Christy says:

I am that woman Susan writes about and I am not sure why she thinks I’m scared of you.

I think if we all sat around a table and shared stories we would find far more in common than the political lines that divide us. I’m unclear how my last blogpost led you, Susan, to this conclusion, it was mostly a story of a rough evening at home with my son and I ended by saying how much we rely on the respite services we receive through Medicaid and yet a room full of mostly rich white male politicians is currently plotting to cut them.

I worry about the mega-rich making decision that affect the rest of us. I don’t fear Trump supportors or people like Susan’s children who do not support Obamacare because it disrupts their ability to care for patients. I too want human care to come first. I don’t claim to have answers to our country’s health care debate. I just appreciate the small bit of help we get, after jumping through endless hoops, to receive Medicaid services. If it were eliminated, we would continue to reach out to friends and family, (on both sides of the political divide), as we always do, as respite staff are paid poorly, so the positions change often, so we have had the equivilant of years without any outside assistance.

After reading this post and all the comments, I am left feeling sad at the way someone like me, with liberal leanings is cast, as if I am the one putting others in boxes or using another’s story to support my political views. I hope we can continue to listen to each others’ stories, to see the humanity–the love, the sorrow, the dreams, the faith— we all carry.

Here is what I wrote in full:

On the Ground

If Marathon Helicopters flew over our house, as they often do, shuttling tourists around Resurrection Bay, if they passed overhead on a certain evening this week, at what seems to be our family’s witching hour, the pilot and passengers might have witnessed a mother yank the crutch right our of her boy’s hand, storm across the clearing, and chuck it as hard as she could into the thick woods.

Gasp! How could she?! Who does she think she is taking that poor boy’s crutch away? That poor crippled, handicapped, disabled ….

That strong-ass kid who, a moment before the chopper flew into view, raised that crutch and crashed it down on his seven-year-old sister’s head. A replica of the previous night, when he jabbed her in the chest with the same spear of a cane.

This same helicopter, full of imagined indignant passengers, did not stay overhead long enough to view the scene that followed a half-hour or so later, when this same frazzled mother held her son’s hand, to help him over the uneven ground, over the Alder roots and rocks, when we walked into the woods, together, to find the crutch I hurled, despite his denials that he hurt his sister, despite him being unable to express why he chose to crack her in the head, despite my fleeting anger and deep sadness, I laced my fingers with his, I adjusted my weight on my feet as his balance shifted, as he pulled on my arm and relied on my steadiness to keep him from falling.

Despite words I regret that seethed from my mouth in the aftermath of a red circle on Olive’s forehead: “Elias if I can’t be out of arm’s reach of you and your sister for two seconds without you hurting her, without you hurting your family, than you may not always be able to live with us!”

Oh that was hard to write—-easy to spew when angry, when my brainstem fires off guilt-laden threats but hard to admit, after the fact, publicly, that I said those words to my thirteen-year-old son. And yet two nights in a row of responding to the screams of my girl, of Elias using his cane as a weapon, of his voice changing, eyes wild, has left me a little unhinged.

“Maybe I’ll be the one who ends up locked up someplace.” Yes, I think I actually said something like that too, not long before I reached out my hand, and Elias grabbed it with his larger one, and we walked into a stand of tall Alders behind the green shed.

I saw the handle of his forearm crutch first. “Do you see your cane yet?”

“No.” We stood atop a small rise, his cane a few feet down from us, a straight line of black and grey amidst the verdant brush.

“Walk forward a few steps and you’ll find it.” I let go of my son’s muscled palm and he walked awkwardly away from me, swaying his way down the slope.

“Mom, Mom,” Elias said, as he held onto an Elderberry bush and reached down to grab his cane, “I found a breaker! I think I might get distracted by breaking!” He looked up at me with that light-filled grin of his, as if he never transgressed, as if he wasn’t growling at me moments before in that estranged voice of his that emerges when he descends: Mom you don’t ever ever take my cane away or I’ll hit you!

As if I hadn’t just threatened abandonment, the tearing loose of the threads of our family, unraveling what I work so hard to hold together.

As if neither of us carries regret in the cells of our skin.

As if we had just been taking a walk, as we often do, looking for dead trees to snap in half, to pull straight from the ground, roots and all.

Roots and all!

The following evening, Elias went to town with his Respite Provider, Stephen, a young man who is cool with riding elevators at the few hotels or hanging in the Teen Rec room playing pool with Elias, who doesn’t use cue sticks, but just grabs the white ball and rolls it with excessive force towards his targets, often knocking balls off the table, loving the sounds of the collisions and the unexpected directions the spheres fly.

After Elias drove down the driveway with Stephen, Nick started a fire and Olive and I brought out fixings for smore’s made with rice crispy treats instead of graham crackers.

“Can I have two marshmallows Mom?” Olive raised her eyebrows and looked at me with her big brown eyes.

“Sure,” I said, wanting to indulge my daughter— even if she is not all victim but part instigator, a sneaky one who pokes the bear, taunts her brother and denies her role in the game, a competitor who flaunts her speed and agility, who changes the rules before he can follow them, who lies and cries when caught, holding her fabrication like a beloved blanket, swearing she’s innocent despite the red stains on her hands.

“And two pieces of chocolate?” she asked.

I smiled at this girl, so like me as a child, and answered: “And two pieces of chocolate.” I cut the rice crispy treat in half lengthwise, making two skinnier pieces, and lay them on the flat rock atop our fire pit, where Olive placed three squares of Hershey’s on each piece.

As she speared two marshmallows, she said, “Mom, why can’t Elias always be with Stephen or Andrea?”

I watched her hold her stick out above the flames and responded, “Because he’s part of our family, Babe, he belongs here with us.”

Olive pulled her stick out to make sure her marshmallow wasn’t on fire. “I know, I mean just every night he could go with them.”

I looked across the fire at this tough fragile girl who didn’t cry when Elias hit her but sobs if we call her bluff, who is beginning to understand, beyond the surface but heart-deep, that her brother is different in more ways than the fact that he walks with a cane. “Olive are you happy to have a break from him?”

“Yeah,” she said, without regret.

“I know, its ok, me too.” I leaned back and put my feet up on the fire pit stones as Olive peered at her marshmallows turning gold.

A few hours without my boy–a teen in body but not in mind– as my shadow, in my personal space, cutting me off with his steps, bombarding me with repetitive questions, constant interruptions, without: Mom, can you…?

Without the feeling that any minute he could turn, he could lash out, he could…

Without an invisible string that ties me to my son, to Olive, never letting me walk too far without worry, without fear, without wondering what will happen when I step away.

Respite: Without it who knows what that red helicopter might see, who knows where you’d find me, find us, this frayed family on the edge of Resurrection Bay.

And since we don’t have family in town, we rely on the social services we receive through Medicaid.

And yet as I write, pin-striped men make decisions behind closed doors to cut back these lifelines, without ever truly understanding the need, without standing in my muddy Xtra Tuff boots, as a piece of my heart lashes out at another, as I respond with all my human failings, as the ravens call out in one of their many voices, as if mocking us, or cheering us on, or merely lamenting another grey summer day as the rain begins to fall.

Or maybe they just sing about some sort of feeling we’ll never know, us ground dwellers, not blessed with wings.

Susan Lapin says:

Christy, I am so glad that you responded! I too feel that were we to sit and talk we would find much that binds us. I read your post again and your critique is fair – I was actually emotionally responding to a number of comments you’ve made over the years including right after President Trump’s election or inauguration – I have not gone back to look to see which it was.

While your blog isn’t a political one, in our day and age it’s hard not to bump up against politics. The few times that you to touch a current issue, I usually came from a different perspective and we are both seeing part of the truth and part of the story. Life is complex and political commercials and our instant communication world reduces us to people who don’t speak or listen to complexities. So, you are right that this particular paragraph in the most recent very beautiful and powerful blog, in and of itself, didn’t call for such a response.

I try very hard to call out people who leave comments on my Musings when I think they are being unfair as I did in a few cases this time. I appreciate the opportunity to do so because I think the ‘gut reaction name-calling and rejection of others’ is on both sides of the divide. When you wrote, “pin-striped men make decisions behind closed doors to cut back these lifelines, without ever truly understanding the need, without standing in my muddy Xtra Tuff boots,” that is how I felt when Obamacare passed and it didn’t matter to me whether there were women or people from different ethnicities that voted for it because that didn’t change the fact that it devastated my family’s health care and the health care of many, many others. If it hadn’t, Donald Trump would not be president.

I have many problems with Mr. Trump and many with Republican politicians (though, yes, I have more problems with most Democrats) and I have written often about my concerns. I may have inadvertently used you as a stand-in for way too many articles in supposedly main-stream publications that spent eight years claiming that anyone who opposed anything President Obama or Democrats did could only do so because of racism, sexism, xenophobia etc., etc., etc. I think a lot of people who read my Musings feel tired of being insulted for caring about their family’s lives and values. We certainly may be prickly.

So, I am sorry if I painted you in a way that isn’t accurate. I’m please people can read your whole post because it is amazing.

Susan

Christy says:

Susan, thank you for your thoughtful reflective response. And yes, I may have made some more knee-jerk emotional posts after Trump was elected (and before) that gave the impression I lumped all conservatives together. I’ve been known to speak (or write) and think afterwards. I have friends and family who voted for him and I love them along with our different political stripes– and as you said, they are not steeped in “isms” but voting for values they hold dear. I agree that too often people on both sides of the lines fail to see the humanity in the other, and I appreciate your willingness to call your commenters out when they make generalizations. As you said, we live in a complex world and too often these days we do not take the time to really know our neighbors but instead isolate into communities of people who think and feel the way we do. I appreciate that you have continued to read my blog even though we see the world through different political lens. I hope to do more of the same.

Susan Lapin says:

Thank you for your gracious response, Christy. I’m sure you aren’t aware of all the people who gather strength from your writings, so I’m glad that this gave us an opportunity to “meet.”

Lora says:

Thank you, Christy and Susan.

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