My Opinion on Abortion

I originally wrote this blog a day or so after the Supreme Court decision overturning Roe leaked. I decided against posting it until I had time to reflect more. I concluded I would wait to release it until the actual decision was official. Here are my thoughts.

I’ve wanted to write this blog post for many years and I’ve hesitated to do so because I’m certain that many of my friends whose opinions, beliefs, and values I deeply respect will likely disagree with what I’m about to say. I need to get some things off my chest on the issue of abortion..

One of the reasons I’ve hesitated to express my views on the topic is that there is a large group of people who hold the position that as a man, I don’t get an opinion on this issue. I acknowledge that part of the problem is that men have been imposing their views on the subject for centuries. I recognize that men do not have as much of a deeply vested interest in the issue as women. But as a person who considers themselves to have a strong moral character and as a person of faith, I don’t think I should be prohibited from holding opinions on the topic nor prohibited from expressing them. So while I don’t want to be seen as another man who’s trying to butt into something that’s none of his business, I’m simply expressing my thoughts on the topic. I’m not trying to impose my views on anyone.

In general, I don’t want to disparage anyone for their beliefs on the issue either. On the other hand, I am willing to point out what I believe are instances of hypocrisy and disingenuous beliefs by many people.

It’s not my intent to stereotype either side. I’m sure many pro-choice people will say, “Maybe lots of pro-choice people are that way but not me.” Similarly, many pro-life people can legitimately say, “Maybe that’s a lot of pro-life people but it’s not me.” As divided as the two camps are, I want to clearly acknowledge that there are differences of opinion and strategy within both groups. I’m not saying that either camp is homogenous in their beliefs. I’m talking in general, broad terms. If the shoe doesn’t fit, don’t wear it. In the end, these are just my opinions and my observations.

What I Believe

I do not believe that human life begins at conception.

Even though this is contrary to the official teaching of the Catholic Church and even though I deeply respect the Church’s views on the topic, I suppose I would have to say that is a matter of faith and it’s not a particular faith that I hold. I will later make some philosophical arguments why one might hold that human life begins at conception even though it’s not a position I hold myself. I would do so to point out the fact that I do understand the reasoning behind the view. I simply do not believe that that reasoning is sufficient to change my opinion.

My mom used to say, “As Mason said to Dixon…’ You’ve got to draw the line somewhere.’” For me, I always believed that the Supreme Court’s decision in both Roe and Casey that draws the line at viability is a reasoned argument.

During his initial presidential campaign, Barack Obama when asked, “When does life begin?” replied something to the effect of, “That’s above my pay scale.” When push comes to shove, I like his answer. But rather than avoiding the question completely. I agree with the original Supreme Court decisions on viability.

Apart from the question of when human life actually begins, I deeply disapprove of abortion on philosophical grounds in most cases. I do not believe however that aborting a pre-viable fetus is the murder of a human being. I don’t mean to trivialize this but if pushed to describe what I think about it, I would classify it as, “a really bad idea.”

There are lots of things in this world that are really bad ideas that are not in any way illegal. There are things that I would strongly advise people not to do. Things that I would not engage in myself. But these “really bad ideas” do not rise to the level where I think they ought to be regulated or that choices to do them should be imposed upon others. This has nothing to do with women’s rights or men making a decision for women. There are lots of really bad ideas that I don’t support but I don’t condemn people for doing them.

One of the problems with the abortion debate is that it is often framed as a binary issue. One absolutely must be either pro-choice or pro-life. The debate is framed in such a way that there cannot be any middle ground. That is unfair. This is a complicated issue. And I find myself sitting squarely on the fence. I think that abortion is a decision that women ought to make for themselves. And it is my belief that the best choice is not to abort.

So, one of the things that people probably will not like about this entire essay is that I’m not taking a stand firmly and absolutely on either side. The only concession I’ve ever heard in the countless hours of public discourse on the topic came recently from Sen. Amy Klobuchar (D) Minn. When asked by a journalist if she thought that being pro-choice was a litmus test for future Democratic candidates, she replied that she knowledged there were people who were personally opposed to abortion but were not willing to impose that belief on other people. In effect, she was talking about me. It was the first time in decades of debate that I’ve heard a public official acknowledge the acceptability of someone who did not have an absolute all-or-nothing approach to the topic.

Ignoring the Core Issue

The thing that troubles me the most about the abortion debate is the way that neither side seems to acknowledge the central issue. They misrepresent each other’s views. The very names of the two factions in the debate frame the discussion in such a way that avoids the central issue.

The central issue should only be, “When does human life begin?”

When one describes themselves as “pro-life” in opposition to the other camp, it misrepresents the other side as being opposed to the sanctity of human life which is not at all the case. I don’t know anyone on the pro-choice side of the issue who says, “Indeed human life begins at conception but women ought to be free to murder an innocent child for whatever reason they want.” No one who is pro-choice believes that abortion is murder. No one who is pro-choice disrespects the sanctity of human life. We know this because one of the major arguments of the pro-choice position is that allowing easy access to safe abortion will save women’s lives. So declaring someone as not being “pro-life” is a misrepresentation of the pro-choice position.

Both sides are legitimately pro-life but those who are opposed to abortion fail to acknowledge that. Furthermore, I don’t think I’ve ever heard someone who is pro-choice stand up and say, “Yes I am pro-life but I disagree on when life begins.” They argue in favor of protecting the lives of women. But they won’t describe themselves as “pro-life” even though they are. Furthermore, I’m pretty sure that most people who are on the liberal pro-choice side of the argument also oppose the death penalty which is a further indication that they respect human life. Sadly, that’s a statement we cannot make as broadly among conservative pro-life advocates. The Catholic Church has a doctrine called, “The consistent ethic of life” and they are as vehemently opposed to the death penalty as they are opposed to abortion. Would that this be true among more alleged pro-life people. Conservative opposition to common sense gun control, universal healthcare, and other social justice issues also call into the question the appropriateness of describing themselves as “pro-life”

Similarly, one would hope that those who are opposed to abortion, do believe in personal freedom and the ability to live one’s life as they wish and to make personal choices so long as it does not harm other people. Sadly, many people who oppose abortion also seek to impose their views in other areas such as homosexuality, the use of non-abortive birth control, and other personal choice issues. When at its core, if you don’t conflate issues, there is nothing about believing that human life begins at conception that necessarily makes you anti-choice.

The inability of either side to see the common ground inflames the passionate demonization of each side. I firmly believe that there could be more reasoned debate and deeper understanding and even healing if both sides would acknowledge that they are both inherently pro-life and pro-choice.

Again, it’s not about choice. It’s not about respecting life. It’s about defining when life begins. So much of the debate disregards what the debate is really about at its core and that is deeply disappointing to a rational person such as me who tries to respect the morality and humanity of everyone. Both sides of the debate are guilty of this issue.

Demonizing Pro-Choice

The pro-life side of the debate often does emphasize their belief that human life begins at conception. And you may think I’m crazy for saying this, but I don’t think they say it enough. Whenever asked a question about the issue, they ought to say, “Because we are firmly committed to the truth that human life begins at conception, we believe that [fill in the blank].”

When they argue against pro-choice, they tend to demonize the position portraying them as the murders of innocent children.Yet they never acknowledge that the pro-choice side sincerely, completely, and totally does not believe that abortion is murder. I would prefer that when describing the other side, pro-life people would say, “We acknowledge that people in the pro-choice movement sincerely do not believe that abortion is murder.” They can then go on to talk about how misguided that view is in their opinion. While it might come across as condescending, it is more accurate and less demonizing to say that someone is misguided in their belief than to betray them as heartless murderers. You could say, “Pro-choice people are people of deep moral conviction who are seriously wrong about the central issue of when life begins.” They could acknowledge that pro-choice people do not see themselves as murderers. You could acknowledge that a pro-choice person does indeed respect the sanctity of human life. Unfortunately, that doesn’t happen much if ever. I don’t want to hear prayer vigils that call for reversing Roe or for legislation outlawing abortion. I want to hear prayer vigils that people change their minds about when life begins.

Just once, I want to hear a reporter ask a pro-life person, “If you did not firmly believe that life begins at conception, would you find it cruel to force a woman to bear an unwanted child?” Similarly, I want reporters to ask pro-choice people, “If you were convinced that life began at conception, would you not agree that preserving that human is that life is more important than the personal choice of the woman who is carrying it?” We might find some common ground.

Ridicule of Pro-Choice

While the pro-life contingent demonizes pro-choice, pro-choice sadly often takes the stance of ridiculing the pro-life position. It is portrayed as absurd, ridiculous, dispassionate, and even ignorant. Some of it is rooted in the position that any religious belief is irrational and not to be taken seriously or respectfully. Liberals sometimes begrudgingly acknowledged that they respect people’s right to believe what they want to. They rightly point out that freedom of religion does not mean freedom to impose one’s religious views on others. However, much of the language and tone of the criticism leveled at pro-life is extremely condescending and couches the pro-life position as being irrational.

While it is true that the belief that human life begins at conception is a matter of faith, once you accept that a person’s belief is that life begins at conception, the pro-life argument is completely rational. I wish that the liberal position would acknowledge something along the lines of the following argument…

Suppose there was a law that nearly 70% of the population agreed to that said if, for some reason you didn’t want to raise your children, it was perfectly legal to murder them up until they were say one year old. One could argue that a one-year-old is incapable of sustaining their own life. In some ways without the support of another human being, it is not “viable.” The argument that “it’s my child and I can do with it whatever I want” would fall on deaf ears.

My guess is that liberals would not in any way shape or form support such a law. But they fail to knowledge that their moral outrage and revulsion at such a ridiculous idea is exactly the same as the moral outrage and revulsion that pro-life people have towards abortion.

Again, it’s a failure to recognize that both sides have the same sincere, deep-rooted respect for the sanctity of human life. If you really, really, really appreciated the idea that the debate is about when human life begins, then the pro-life position is just as morally upright as the pro-choice position. There is no basic difference in the morality of the two positions. Liberals fail to acknowledge that. Much of the derision that the left holds for the pro-life movement is a failure to understand or acknowledge that it really is (or ought to be) solely about when life begins.

If you truly believe that holding any religious belief is irrational, misguided, or ridiculous then have the courage to stand up and say so. Love him or hate him, comedian Bill Maher doesn’t hold back at all in his ridicule of any religious belief. I’m not saying that everyone who is pro-choice is anti-religion but many of their arguments against the pro-life movement are thinly veiled derision of religion and lack of respect for religious beliefs. I want to hear more acknowledgment from the left that the pro-life’s position is rational once one accepts the basic belief that life begins at conception. Go ahead and say, “You can’t impose your religious beliefs on me.” But don’t portray religious people as being ignorant, irrational, or dispassionate towards the plight of women unless they clearly are anti-women outside the abortion debate.

Hypocrisy of Pro-Choice

As I stated earlier, I’m not necessarily trying to change anyone’s opinion. I’m trying to be as fair and balanced as I can be. But I feel it necessary to point out what I believe is hypocrisy in the arguments from both sides. It’s going to be painfully obvious that I’m going to have more to say about the hypocrisy of pro-life than pro-choice. I’m sorry. That’s just the way I see it..

One of the things that disturbs me about the words “pro-choice” it seems that there are many women who choose abortion because they feel they have no other choice. On the liberal side of the debate, there seems to be a lot more energy expended on helping women choose abortion and not so much energy expended on helping women not choose abortion. In fairness, women’s right to choose not to have an abortion is not under attack. But I would feel much better about the liberal position they were more committed to promoting adoption. While the liberal stance is in support of things like childcare, equal pay for women, and other social justice issues that would make it easier for a woman to choose not to abort, there seems to be a fear on the part of the left that if they pay too much attention to helping women choose not to abort, that they will be branded as traitors to the cause for being too much “pro-life”.

In some ways, I’ve already covered some of the other hypocrisy of pro-choice. They tend to argue from a position of moral superiority and they ridicule the other side without acknowledging the morality and rationality behind much of the pro-life argument. And many, use their disdain for religion as part of the argument. Being mostly liberal myself, there may be other forms of hypocrisy that I am not sufficiently objective to realize. Sorry about that.

The Problem of Exceptions

One of the areas in which both sides show hypocrisy regards the issue of exceptions to abortion restrictions. The left tends to demonize pro-life for not allowing for exceptions. One of the problems is that pro-life is inconsistent in its views on exceptions. In many ways, the issue of exceptions is the biggest area of hypocrisy on the part of pro-life.

While the left demonizes the right for not allowing exceptions, in my opinion, if the right wanted to be logically consistent they would be even more inflexible about exceptions. If pro-life was really as pro-life as they claim to be, they would be even harsher on exceptions.

Let’s look at the exceptions one by one. Throughout this argument, we are going to take the position that human life begins at conception. After all, that’s my basic thesis that this is what the debate should be about.

The Life of the Mother

In my opinion if you really believe life begins at conception, then “the life of the mother” is the only, only, only acceptable exception in which abortion should be allowed. The rationale behind this is an argument for basic self-defense. Our common moral tradition is that one can defend one’s life with lethal force.

One of the things that muddies the water is that many times the phrasing of this exception is “the life or health of the mother.” That is lumping together two completely different things. If someone is going to make me sick, do I have the right to murder them in self-defense? I don’t think so.

The other problem with the “health” exception is that it is often undefinably broad. We need only look at the ease with which one can obtain medically necessary marijuana or a comfort companion pet to realize that it’s easy to get a doctor to sign off on lots of things based on one’s physical or mental well-being. That doesn’t mean I’m unsympathetic to the suffering that women go through during a problem pregnancy. It does not mean that I am unsympathetic to the emotional trauma that comes from having to endure nine months of pregnancy. But if one truly, truly, truly believes that human life begins at conception, is it morally justifiable to murder someone to protect your physical or mental health? If the health risks are extreme, severe, and reasonably likely to cause fatal harm then that’s different. And that goes for mental as well as physical health. If you are in such a mental state that the emotional trauma of a pregnancy credibly leads you to suicide then that is the life of the mother. Not the health of the mother.

Rape and Incest

First of all, let me acknowledge that I realize as a man I am uniquely incapable of understanding the trauma of these situations. No matter how sympathetic I try to be, it’s going to be insufficient. I know that. However, we are talking about what is or is not morally acceptable. Just because something is morally right doesn’t mean it’s easy. In fact, many issues of morality impose difficult and traumatic demands upon a person.

One of my biggest pet peeves about the entire abortion debate is lumping together the issues of rape and incest. Words have meaning. These are two entirely separate issues.

This is going to sound horrible but hear me out before you call me a monster.

Incest should never be an exception.

Let me explain. If adult close blood relatives conceive a child as a result of completely consensual sex, then there is no reason whatsoever that one should want to abort such a child.

”But wait a minute!” you will say. “Are you saying if an underage girl gets pregnant by her father, brother, uncle, or first cousin that she should not be able to abort the baby?” I did not say that at all. All of those scenarios are undeniably rape. They need to be acknowledged as rape even if they are consensual. “But”, you will argue, “Even if a girl is of legal age at 18 and consents to sex with a relative, it is likely that the power dynamic between the two in an incestuous relationship is wrong.” My response, “Yep… That’s rape and covered by the rape exception.”

I believe that lumping in incest with rape diminishes the fact that underage incest is rape and it fails to knowledge that as repugnant or taboo as we might feel a consensual incestuous relationship is, it is not rape. It is my opinion that consensual adult incest does not warrant an abortion. If one believes that human life begins at conception it certainly is not grounds to murder someone. And if someone believes as I do that abortion is simply a really bad idea it also is not grounds for abortion to be somehow a good idea.

“But wait a minute!” you will say. “What about the high probability of genetic abnormalities that comes from an incestuous conception?” I promise you I will address that in a later section.

Let’s get back to the topic of rape.

If we are going to take an absolute position that human life begins at conception, then you have to ask yourself, although rape is a horrible, unspeakable, unimaginable tragedy, does the fact that one is a product of rape make it justifiable to murder you. Forcing a woman to carry a child is a product of rape does indeed compound the pain and horror of the original experience and forces it to be lived continuously for nine months. But does the radically immoral act of rape justify the murder of an innocent human being? Most decidedly no.

It is a tragedy upon a tragedy upon a tragedy that a woman should have to suffer through such a pregnancy. But the murder of an innocent life compounds that tragedy even further.

If pro-life people were as pro-life as they claim to be. They would allow no such exception.

In a recent interview, Republican Gov Asa Hutchinson of Mississippi was asked about the fact that a restrictive abortion law he recently signed had no exceptions for rape or incest. In response, he reiterated his belief that human life begins at conception. Way to go governor. But then he said that he believed the issue of exceptions was still open to debate and strongly implied that he would support exceptions for rape and incest. Not out of sympathy for the victims of such crimes because of political expediency. He felt that it would be easier to get abortion restrictions passed if there were such exceptions. Given a choice between no restrictions on abortions and abortion restrictions with exceptions, it would reduce the number of abortions and to him that was acceptable.

My reaction to that was… “You fucking hypocrite!”

You can’t have it both ways. Either abortion is murder or it isn’t. Let’s go back to the example of the one-year-old. Suppose a rape victim carries the baby to term. The baby is born and after six months the mother decides they can’t stand it. Can they murder the baby because it prolongs the trauma of their rape? Is that justifiable homicide?

While I would have more respect for a radically pro-life person who had no exceptions except for the life of the mother (self-defense) and I would find their positions more logically self-consistent and not hypocritical if they would stick to their no exceptions policy, many of these idiots have had God awful ways of expressing that. Most notably are those who have said something along the lines of, “If a woman gets pregnant from a rape is God’s will.” Holy fucking shit! It’s no wonder that the left makes fun of the religious beliefs of such people.

Couldn’t you just say that the tragedy of rape should not be compounded by the tragedy of murder on top of that? Do you have to be so insanely tone deaf to imply that rape is God’s will? Not only do inarticulate and insensitive pro-life people damage their position and the movement through bad theology such as “it was God’s will she was raped“ they also engage in blatantly unscientific arguments such as “you can’t get pregnant from rape.” It takes a lot of ignorance to espouse bad theology and bad science at the same time but unfortunately, many politicians do.

If the left wants to be critical of the no exceptions policy, they need to say something like, “I understand that the pro-life people believe that abortion is murder and I understand that they believe that a child conceived of rape does not justify the murder of an innocent child. However, the pro-life movement seems insensitive to the plight of rape victims. I do not believe that life begins at conception and therefore that is why am in favor of abortion on demand and especially in the instances of rape.” But they don’t do that. Instead, they make fun of their religion. And in some respects, because the pro-life people are so inarticulate in expressing their position and so insensitive to the plight of rape victims that they hurt their own case irreparably. These radically insensitive inarticulate people besmirch the entire pro-life movement.

In all of the above I’ve been arguing from a radically inflexible position that life begins at conception and as I said at the beginning of the essay I do not hold that position. I explained my personal position that almost all abortion falls under that wimpy category of “a really bad idea.” In the instance of rape, given my total inability to understand or appreciate the trauma of a woman who has experienced such a tragedy believe I could give my wholehearted support to someone who wanted an abortion under such circumstances. If there is anything that turns abortion from a really bad idea into an acceptable idea, it’s the issue of rape. That’s my personal view.

Nazi Level Shit

In a science fiction story that I’ve not yet been able to get published, part of the story is of a young girl whose parents want to force her to have an abortion because of a unique genetic issue with the child. I won’t spoil the story by telling you what it was. In pleading her case before a judge, she says, “They are saying that people like me and my baby don’t have the right to exist. That’s some Nazi level shit!” While some people will argue that an old straight cisgender guy has no business trying to tell the story of a pregnant teenager with gender identity issues… the girl in the story is quoting me when she says that.

My disability is Spinal Muscular Atrophy Type 2. It is a genetic neuromuscular disease. It is possible to do amniocentesis and detect whether or not an unborn child will have SMA. I know for a fact that there are people who have done such genetic testing and based on the results have decided to terminate the pregnancy rather than give birth to a disabled child.

While I support a woman’s right to choose to terminate a pregnancy and while I have a general dislike for abortion and wish that women would not choose it, in the case of this particular type of abortion I cannot help but take a firmer stance. I take such things quite personally.

My disability is an integral part of me. While one might say, “What would my life be like if I had not had a spinal cord injury?” Or, “What if I had not suffered brain damage during a difficult childbirth resulting in cerebral palsy?” Or as was the case with many of my classmates who were slightly older than me, “What if I had not contracted polio resulting in my disability?” But one cannot say, “What would Chris Young be like if he didn’t have SMA?” In the case of a genetic disease, you cannot separate the person from the condition. You can treat the condition. Possibly come up with a medical cure. But Chris Young without SMA just can’t exist.

In general I don’t like abortion but I am much more likely to accept someone who aborts a child simply because they don’t want children, can’t afford them, it ruins their career or any number of reasons, then I could accept the idea of abortion based on genetic differences.

That’s some Nazi level shit.

I do however need to be fair in my portrayal of people who typically abort children with SMA. In the cases that I know of personally, these are couples who have already had a child born with SMA. They are typically SMA Type 1 which is considerably more severe than my Type 2. Up until recently, the life expectancy of a child with SMA Type 1 was under two years. Having already lost a child to the disease and faced with the possibility of having another child and losing them, they instead choose to abort. In other words, “let’s kill it now because it’s going to die eventually.” I can’t begin to imagine the tragedy of losing a child under any circumstances and I completely understand the desire not to suffer that tragedy again. However, I cannot condone such selective breeding. I find it not only personally insulting to me and people like me but I find it dehumanizing. It turns human beings into breeding stock.

The situation is even more complicated in that although prenatal testing can determine whether or not a child will have SMA, it cannot predict whether or not they will have the more severe Type 1 or a less severe Type 2 like I have or the even less severe Type 3. Furthermore, there are now treatments for SMA that if administered to newborns can in many cases allow them to grow up completely unaffected by the disease.

Despite my claims of Nazi-ism, I don’t condemn parents in that particular situation but I pray that they find other ways to enjoy the joys of parenthood without engaging in selective breeding. On the other hand, given the potential for abuse, there undoubtedly will be other people who choose to abort over other genetic issues that do not involve fatal disabilities. I cannot condone aborting a boy if you wanted a girl or vice versa. Do we abort blue-eyed kids or brown-haired kids or other trivial unwanted conditions? It’s a slippery slope.

That brings us back to the issue of consensual incest. Incestuous conception runs a high risk of genetic abnormalities as a result of doubling up recessive genetic traits. Whether we take the “human life begins at conception” objection to abortion or the “really bad idea” objection, I can’t condone aborting children based on the probability (or even the absolute certainty revealed by prenatal testing) of a genetic condition. Someone who engages in consensual incest and is unaware of the risks is behaving irresponsibly but that doesn’t justify abortion in my opinion. If human life does begin at conception, genetic abnormalities should not be grounds for murder.

A Rational, Non-Religious Argument That Human Life Begins at Conception

While we are discussing genetics, I want to put forth what I believe is a rational, non-religious, argument for the position that human life begins at conception. First, let’s look at a rather ridiculous and spurious argument against the idea.

Some pro-choice people take the view that it is ridiculous to afford human rights to a single fertilized ovum. They go on to speculate that why should we stop there? That every sperm and unfertilized ovum a potential human being to be regarded the same rights? The epitome of this stance was the satirical song by Monty Python “Every Sperm is Sacred.”

While many religious traditions are opposed to masturbation, I don’t think I’ve heard anyone who is pro-life who seriously wants to extend human rights to every sperm.

So what is the difference between unfertilized zygotes and a fertilized cell? The difference is the completeness of genetics. If I ever get around to writing my autobiography, I already know with the opening line is going to be.

Whether or not you believe I was a human being at the time, it was at the moment of my conception that it was determined that I would have the genetic neuromuscular disease known as Spinal Muscular Atrophy. That fact is influenced every aspect of my entire life in a unique way. It is an integral inseparable part of me.

It is at conception a unique combination of a single sperm with a single ova that defines us uniquely as the human being that we will come to be. Obviously, not everything that happens in our life is determined by genetics. But that part of us that makes us unique individuals begins at that moment.

I think it’s a pretty good argument. It doesn’t rely on “The church says so” or “My interpretation of the Bible says so.” It is probably more philosophy than science but there is a great deal of science involved in the argument. It is at the root of my opposition to abortion for purposes of selective breeding.

For me personally, it does not rise to the level of “abortion is murder.”

Is It a War on Women?

Part of me wants to be disturbed when the left characterizes the abortion debate as a “war on women.” The main problem is, that there a are number of men and women whom I love and respect who are very decidedly pro-life and are in no way misogynistic or anti-woman.

The prime example is my late mother. Sometime in the mid-1960s before Roe in 1973 and before it was commonplace to be politically active on the issue of abortion, my mom testified before the state legislature in support of an abortion ban. My family has been described as a perfect poster child for pro-life (although we’ve never been on a poster).That comment was made one Sunday when I, my mother, my grandmother, my sister Carol, and Carol’s daughter Britney presented the gifts at the offertory of a mass at St. Gabriel on Respect Life Sunday one time. I was born with a genetic disability and we’ve already established that some people consider that grounds for abortion. My mother gave birth to five other children after me all of which were born premature and none of which lived more than 48 hours. After that experience, we adopted my sister Carol through a Catholic adoption agency. Her biological mother could have chosen to abort her but did not. Carol’s daughter Britney (as well as 2 more daughters that would come later) were all born out of wedlock. Finally my grandmother Helen Osterman was approaching age 90 and had been chronically ill for the last five years of her life. I can’t speak for the rest of them, but my pro-life beliefs come not because the Catholic Church tells me so but because it resonates in my life and my family. Nothing about our pro-life stance is in any way disrespectful towards women.

I’m offended when pro-life is equated with misogyny.

As stated earlier, neither the sincere belief that human life begins at conception nor the less stringent belief that abortion is a bad intrinsically requires one to be opposed to women’s rights.

Sadly, it is painfully obvious that that is not the case in a large portion of the pro-life movement especially when it comes to male politicians. The fact that organizations like Planned Parenthood have only a small percentage of their activities related to abortion and the fact that federal money that goes to such organizations cannot and is not used for abortion services does not stop people from trying to destroy such organizations. The vast majority of the work of Planned Parenthood is dedicated to women’s health yet the pro-life advocates want to destroy the organization.

One somewhat valid argument goes something like this… If a neo-Nazi group or a KKK chapter was running a woman’s health clinic, even if they didn’t perform abortions would you be in favor of funding their health clinics considering their abhorrent positions in other areas? Of course not? So the fact that 95% of what Planned Parenthood does is not related to abortion, do we want to implicitly endorse an organization that murders children? Crazy as it seems, it’s not a bad argument.

Here’s the problem… If I was a rich white male politician with varied business interests who was legitimately pro-life and not anti-women, I would open up a string of women’s health clinics that provided all of the same non-abortion services provided by Planned Parenthood. I would suck away all of the government funding from Planned Parenthood into my little side business of taking care of women’s health because for me I don’t hate women. I just hate abortion. If that was the case… I would understand and appreciate the legitimacy of their opposition to Planned Parenthood.

But no one has done that. And for me, that is the real proof that a disturbingly large segment of the pro-life contingent is indeed inducting a war on women’s rights and women’s health. Part of the problem is that Planned Parenthood supports birth control. And although the Catholic Church is opposed to artificial birth control, most evangelical denominations on the religious right who are allegedly pro-life have no problem with birth control on moral grounds. However, that only applies to married women. To them, providing women’s health services is somehow condoning a promiscuous lifestyle. Even if it’s not about birth control, Planned Parenthood serves mostly poor people. And the conservatives cannot help themselves but look at poor women, especially single mothers (even if they chose not to have an abortion), and blame them for their condition. They are completely unsympathetic to the needs of such women.

Again, my proof that this is the case is the fact that no one has opened up a string of women’s health clinics that do everything except abortion.

I’m not painting the entire pro-life movement in these broad strokes. People like my mother and my family are not small exceptions to the rule of misogyny. There are lots of pro-life people who are supportive of women’s rights that do not have anything to do with abortion. But there are way too many male decision-makers and even some holier than now women who stereotype those who are in need of women’s health services as sluts. These same people are opposed to universal healthcare of any kind, oppose other social service programs such as food stamps, welfare, and disability programs, and are especially unsympathetic to immigration issues.

These are all Christian values that they ignore yet they are supported by religious fundamentalists simply because they claim to be pro-life. Such hypocrisy is a grave disservice the to the legitimate cause of a pro-life philosophy.

One of the Ten Commandments says, “You shall not take the name of the Lord in vain”. While many people interpret that to mean that you should not swear using God’s name, I’ve always understood it to mean that you should not call yourself Christian and then act otherwise. All you do is give legitimacy to those who say that all religious people are hypocrites. You damage the brand.

It is disturbing to me how little of the pro-life movement focuses its energy on helping women to keep their babies and to have the economic stability to raise them. In the same way that pro-choice focus not so much on helping women choose not to abort, the pro-life side expands a disproportionate amount of their energy on legislating against abortion rather than supporting the needs of women who choose not to abort. There is an attitude that once the baby is born, they have saved an innocent life and their work is done. I’m not saying everyone who is pro-life has that attitude but it is way too prevalent.

Pro-Life Self Delusion

I hate to beat up on one side more than the other. However, there is one more criticism and I have to level at a large piece of the pro-life movement.

I don’t think they are as pro-life as they claim to be. I’m not talking about the hypocrites who oppose women’s health services or any of the other disingenuous things that I described above. I’m talking about people who sincerely claim to be pro-life and sincerely claim that they firmly believe that human life begins at conception. But their actions are disproportionately insufficient to illustrate the sincerity of that belief.

Let’s go back to the example of the hypothetical law that would allow one to murder an unwanted child up until the age of 12 months. If such a law existed, what would be your response? Would you sit idly by and hold prayer vigils? Would you peacefully protest? Would you debate and advocate for your position or would you take action to save innocent lives?

I can in no way endorse violence. I don’t think blowing up abortion clinics is the answer or committing violence against those who participate in such facilities is appropriate. Then again, let’s take another hypothetical. Suppose it was a country that has a law permitting the murder of children up to a certain age. Would we go to war against that country? If not war, what about significant economic sanctions? Wouldn’t we do anything possible to prevent such an atrocity?

I think what I’m saying is that I have a deeper respect for those who picket up and down outside abortion clinics, chain themselves to the doors, and engage in other nonviolent acts of civil disobedience.

When I looked at my own beliefs against abortion, I realized that my opposition did not rise to the level of extreme acts of civil disobedience, constant protest, constant statements of radical outrage, and other extreme measures consistent with what I might do if one-year-olds were being slaughtered for no legitimate purpose simply because it’s what a woman chose to do.

So, I had a choice. Because I wasn’t sufficiently outraged that abortion on demand occurs in this country as a matter of law, it either meant that I was morally deficient for not caring or it meant that I really did not believe that a pre-viable fetus was a human being. After considerable self-reflection over the course of decades contrary to the teachings of the Catholic Church which I love and respect, I concluded it was the latter.

When I see people whom I love and respect who are decidedly pro-life and respectful of human rights and claim that they believe that human life begins at conception yet I do not see a reasonable expression of their outrage over abortion and I do not see action consistent with that level of outrage, I have to wonder do they really believe there is no difference between a pre-viable fetus and a human being which has been born? My guess is, subconsciously, they feel there is a difference. Deep down they do not believe that a fetus is a human being. If they did, they would be doing a lot more about it.

I’m not sitting in judgment of such people especially because I once was one.

I’m inviting them to look inside themselves as I did and see if they can find within themselves what I found within me. It is possible to be considerably, morally, opposed to abortion without the necessity to impose that belief on others because abortion is not really murder?

That’s a decision everyone has to make for themselves.

Is This The “United” States?

I’m not saying we all have to agree on everything. Disagreement and civilized debate is at the heart of American democracy. The reason I asked if we are “united” is the entire issue of states’ rights.

As I write this, a draft decision of the Supreme Court has been leaked and in all likelihood, Roe will be overturned. (I decided not to release this blog until the decision actually was really official.) The wording of that decision claims that it only applies to abortion yet the logic behind the decision is that there is nothing in the Constitution that specifically allows for abortion. Furthermore, the illegality of abortion has a long and ancient tradition. This implies that other rights such as interracial marriage, gay marriage, extramarital sex, and the use of birth control as well as other personal privacy rights which are not explicitly in the Constitution could be overturned as well.

Now that the draft document is finalized, it will be up to the individual states to decide whether or not abortion should be legal. The entire issue of states rights has always been a pet peeve of mine. I always believed I lived in the “United” States. I’ve especially experienced this problem when it comes to other social justice issues most notably healthcare and programs for people with disabilities. Depending on what state you live in, the kinds of programs and services that are available to you are inconsistent from state to state. Not only am I frustrated by states’ rights but by the entire issue of “local control” especially when it comes to school districts. At least in Indiana, and probably elsewhere, public schools are funded by property taxes. That means that poor inner-city school districts have less funding than more affluent suburban school districts. The quality of education that you receive depends upon your ZIP Code and the socioeconomic status of that ZIP Code.

One does not have to study history very deeply to understand that the issue of states’ rights and local control is deeply rooted in racism. It doesn’t take much of a leap to conclude that the variability of access to abortion once the decision goes back to the states will indeed have a racial component to it. And if not race, certainly socioeconomic status.

It saddens me to say this, but I would not be at all surprised if the United States of America is heading towards a second Civil War. The gullibility of American voters was amply demonstrated with the election of and the continued support for Donald Trump. The hypocrisy and lack of shame of mainstream Republican leadership will inevitably exploit the gullibility of the American public.

Russia didn’t interfere in our elections. The lack of respect for provable truth, common decency, the rule of law, and the willingness of unprincipled people to exploit it is what ruined our elections and threatens to do even more damage to democracy in the near future.

If such a Civil War happens, there will be those who blame it on abortion. Pro-life and pro-choice factions will continue to demonize one another and blame one another for the divisions in our country. And much of that will be because both sides failed to acknowledge what it is that they genuinely disagree about and they failed to acknowledge those on both sides of the debate who have a strong moral center and commitment to human rights.

It makes me sad.

One Last Disclaimer

One final time I want to reiterate that not everyone on either side of this debate is guilty of the accusations that I make. If you are offended by how I characterized either side, don’t presume I was talking about you unless you are guilty of my accusations.

Peace be with you.

A Memorable Week Before Memorial Day

I recently spent two nights in St. Vincent Hospital and the events were complicated enough that I think it requires a blog post rather than a quickie Facebook message. Not exactly the epic sagas I have written about previous hospital visits but certainly one outside my usual experience.Wherever you see this Facebook icon it is a link to a Facebook post I made at the time. All of my posts are public so you don’t need to be my Facebook friend or a Facebook user at all to read them.

Background

On perhaps four or five occasions over the past several months, I developed a pain underneath my tongue on the right side. Something was irritating my saliva gland. It was a stinging, burning sensation that could be quite uncomfortable. Typically, however, it would last a few hours at most half a day, and then would disappear for weeks.

Sometime either Sunday night May 22 or Monday the 23rd I had another appearance of this pain. I woke up Monday morning with some unrelated hip and leg pain severe enough that rather than take Tylenol, I broke into my stash of Tramadol which I have been prescribed for back and hip pain. I use the Tramadol about once or twice a month at most. One of the side effects of the drug is that it makes my mouth very dry. If my saliva gland was swollen, this side effect would be beneficial.

My pain was under control Monday without taking any extra doses although I think I might’ve done some Tylenol later in the day. The mouth pain continued Tuesday and Tylenol was sufficient to keep me happy. When I woke up with continued pain Wednesday morning I do I had to do something. I went to the Tramadol again and tried calling my Ear/Nose/Throat doctor. I really wanted to get to see someone today because the rain that morning was supposed to lift but it would be much more rain Thursday and Friday. If I couldn’t get in to see a doctor I would just go to the MedCheck on Main St. in Speedway which I have been to very many times… mostly for UTI problems.

I called my ENT and after navigating the voice menus I would have had to leave a message at the scheduling desk. I wanted answers quicker so I hung up and called my primary care doctor. I got a live person at scheduling and although my doctor did not have anything available, one of his associates had an opening at 12:30 p.m. so I grabbed it.

One of the complications of my disability is that all of my joints are contracted including my jaw. My mouth barely opens at all. It’s extremely difficult to brush the inside of my teeth. I have a tiny toothbrush that I use as best I can but it is still difficult to get to the inside surfaces. My dentist has always said, “It’s a good thing all of your cavities have been on the outside. I don’t know what we would do if I had to give you a filling on your inner side.”

The doctor gave me a Covid test and a strep throat test both of which were negative. She was unable to see inside my mouth under my tongue. If she had had a dental mirror she might have had more luck. In fact, I considered calling my dentist instead of a doctor. If you pressed underneath my chin in the area of the gland, you can tell it was a little puffy and it was tender to the touch. She prescribed amoxicillin and sent me on my way. I was happy with that realizing it was the most we could do. I think I might have taken some Tylenol later in the day but I got through Wednesday okay.

The crisis begins

I woke up Thursday morning with terrible pain. I later told the doctors on a scale of 1-10 this was a solid five. I immediately went to the Tramadol and made the decision to stay in bed. I had my home health aide get me cleaned up and fresh underwear but I did not get dressed.

I suffered a good 45 minutes until the drug kicked in. About five hours later I decided I needed more Tramadol. With the exception of occasions in the hospital after my trach surgery, I had never taken Tramadol more than once a day.

I called my primary doctor again to ask what I should do now that the pain was worse. They said, “If it gets worse call us.” They never returned my call.”

One other bit of excitement, Barb had been in the hospital for a few days with anemia problems. She came home Thursday morning. We often joke that we take turns going to the hospital but we really didn’t think I would be going out to the hospital the evening after she came home.

I had been telling people on Facebook about my mouth problems. I posted this message on Facebook telling people Barb was okay home and I was feeling worse.

Around 5 PM I was still feeling miserable. After lying in bed all day I knew to roll over on my side for a while. I wasn’t sure how long I would want to be that way so I had Barb pull up a chair and sit with me. She likes to listen to audiobooks and she asked if I mind if she turned one on. I said okay. It was some fantasy story about vampires versus werewolves. I’m more of a hard sci-fi fan. Not so much fantasy. However, this story wasn’t bad and I sort of got into it.

After about a half hour I decided to roll back onto my back. The entire time I was debating if I should go to the hospital.

A new symptom suddenly arose. I realized that my tongue was starting to swell. When I rolled onto my back, it became more apparent that this was serious. My head was in a different position lying on my back and it became extremely difficult to talk. I told Barb what was going on and said, “I’m going to the hospital.”

Unfortunately, ambulance trips to the hospital or becoming a bit routine around here. We have a large canvas plastic coated mat with straps on the side that the hospital used one time to transport me on and off my bed. They let me keep it and it’s been very useful for ambulance transport. We put the mat underneath me and I feel a lot safer having the ambulance people dragging me around on it rather than just lifting me or using a sheet with no handles. An additional part of our routine preparation for 911 transport is that we have to remove my wheelchair, my Hoyer lift, and bedside table from my bedroom so that they could bring in the gurney. I also made sure to grab my iPhone and stuff it in my undershirt.

Somewhere along the way I’ve managed to click out a quick message on my iPad to Facebook saying “Going to the ER.

Carol was at work at her new job at the fairgrounds and would not be home until after 10 PM. We were confident I would be admitted so Josh agreed to transport my ventilator which I would need. We had previously been able to persuade private ambulances who brought me home to transport the vent but we had never been able to get the 911 people to transport the vent with me.

We wrestled me onto the mat and by this time my tongue was so swollen, that it was getting difficult to breathe. I have a trach with a device called a Passy-Muir speaking valve. It allows me to breathe in through the trach but then it closes when I exhale so that air could come out over my vocal cords and out my mouth. I could also breathe out my nose but my nose was stuffy that day. So I could breathe in but could not breathe out and it became impossible to talk. At one point we had to remove the valve so I could catch my breath by breathing fully in and out of the trach. Of course without the valve in, I could not talk.

I finally realized if we propped up my shoulders with a pillow so that my head would lean way back, we could leave in the valve and I could talk with difficulty. Normally when we call an ambulance I do the talking to the 911 operator. Barb has a slight tendency to ramble under such circumstances and not get straight to the point but I had no choice but to let her do the talking.

When you call 911 the first thing they ask for is of course your location. Through experience, I know that the ambulance is handled by the fire dispatcher. If you give them medical history without getting to the point that you need an ambulance, you end up wasting time talking to the wrong person. So we have learned that the first thing I should say is, “I need ambulance transport.” Then they immediately switch you to the fire dispatcher and you can give them the info. This time, after giving the address, the 911 operator immediately asked, “police or ambulance?” I don’t know if they changed procedures or if my address came up with a history of ambulance runs for both me and Barb that perhaps they correctly guessed was going to be an ambulance.

Barb still rambled a bit without getting straight to the point but it wasn’t too bad. I always feel like you have to prioritize your information with the most important stuff first. The fact that I was bedridden wasn’t as important as why I was needing the ambulance.

Among the things she said was that I had difficulty breathing. Usually, we are careful to say that this is a non-emergency. The operator said they would be here quickly, with lights and sirens. After Barb hung up she said, “I forgot to say non-emergency.” At the time I had my valve out and could not tell her I was glad. I was beginning to realize this really was an emergency. The thought crossed my mind that if I did not already have a trach, I would be dying right now.

Both fire rescue and ambulance arrived quickly. I had my head tilted back as far as I could we put the valve in when they arrived so I could talk. It was a bit chaotic in my bedroom with two paramedics, a couple of firefighters, and Barb all talking at once. At one point I had to yell, “Will everybody please shut the fuck up so I can tell you what’s going on. I don’t know how long I can talk!”

My mind was racing trying to prioritize information because I didn’t know how long I might be able to continue to communicate. I explained what was going on and that when they transferred me to the gurney we would have to immediately prop up my shoulders again and get my head tilted back as far as possible. We showed the EMT how to take out and put in the valve so that I could talk briefly and then catch my breath. He caught on quickly and was able to do so throughout the ride to the hospital. I’ve made sure that he explained thoroughly so the nurses how important this was and that once I was moved to the hospital gurney we would have to get me repositioned perfectly. He still had great difficulty understanding what I was trying to say because I couldn’t speak very well or very loudly. Normally I like to be very chatty with EMTs to distract myself from what’s going on. But when he wasn’t asking questions I just had to lie there and worry about what was happening.

Although they used lights and sirens on the way in, we did not go fast out with lights or sirens. I think we were at about 38th and Georgetown which is near where the ambulance is stationed. Someone came out at the stoplight to talk to the driver. She had to tell them twice that she couldn’t talk because she was transporting a patient. I couldn’t believe she had to tell them twice!

At the ER

We arrived at the hospital at about 8 PM. We got me well repositioned on the new gurney and I was able to communicate fairly well with the nurses. Unlike during the ambulance ride, we did not need to continuously remove the valve for me to catch my breath. I was feeling infinitesimally less stressed by the situation. One stressful part of this is always the fact that I am completely unable to use a nurse call button. I told them that if they left me alone in the room, I wanted the valve out.

Last time I was in the ER with respiratory problems I had lots of familiar faces working on me. Several of the nurses recognized me and are familiar with things like how difficult it is to get an IV started. This time it was all strangers. I tried to convince the nurse that he would need the ultrasound machine to find a vein but he insisted on trying it on his own before eventually relenting and getting the device. I refrained from saying, “I told you so.”

Because of those delays, I never was left alone until the point when Josh arrived with my ventilator. I was also communicating much better at that point. My tongue was still a mess and the pain was bad but I wasn’t in such a panic mode anymore. Knowing that I was not going to be alone in the room was a huge relief. In the past, the procedure had always been to have someone meet me at the hospital and stay with me until I was settled in. However, hospital visits had become routine and I don’t longer felt like I had to have Barb or Carol be there with me. I’ve been able to go it on my own the past several times. This time however I was very happy to have someone there. Josh commented that he got to see me really quickly. Usually, you have to sort of talk your way into visiting an ER patient. When they saw him transporting a ventilator, they escorted him right in. I was extremely happy to have him there. Josh and I had the opportunity to just talk about sci-fi and TV shows and stuff and it kept me well distracted from what was going on. It was such a relief to be able to talk without having to prioritize every sentence!

When the doctor arrived, I got to tell them my history of the mouth pain off and on for a few months, the events of the past several days including my visit to the doctor on Wednesday, the extreme pain Thursday morning, and then my tongue swelling which was what led me to the ER. I told them I couldn’t believe the mouth problem alone would make my tongue suddenly swell up. But I had taken amoxicillin before. I had three doses in the past 24 hours and the tongue problem didn’t occur until almost 9 hours after my most recent dose. I also told them I had experience with Tramadol. It looked like an allergic reaction but there was nothing that could’ve caused it.

They gave me Benadryl, a steroid, started IV antibiotics, and ordered a CAT scan of my house and neck.

Josh was giving phone updates to Barb. Carol got home and although she was hungry and tired I asked if she could please come. It was really different than my usual hospital visit. I was so happy to see her arrive just before they took me for the CAT scan.

I knew that transferring me on and off the table for the CAT scan would mess up my head position and I would not be able to talk or perhaps breathe well. I was going to have Carol remove my speaking valve before they took me to CT but they moved quickly and I didn’t get a chance. I thought I could tell the CT tech everything I needed to tell her but when we got to the CT room it was noisy and I wasn’t talking very well. She couldn’t understand anything I was saying. I tried to get her to remove the valve but she didn’t know what I was talking about. I kept saying “Wait, wait…” But then when I would talk they didn’t understand.

They finally just told me to tough it out. I was able to breathe in through the valve and then with difficulty could squirt air out my mouth to exhale in a kind of panting. I knew I would have to hold my breath during the actual scan. They were using contrast in my IV which can make you feel hot and a bit nauseous. I was ready for it and that wasn’t bad.

Just transferring from one table to the other is scary for me when I can’t communicate. My arms tend to flop out the sides of the gurney and I can get my fingers scraped on doorways. I had managed to warn the EMT about it going in but did not have a chance to tell the CT tech to be careful. There are lots of other things that I could not call to their attention such as my kneecaps which can dislocate easily so stay away from my knees. I also have a urine bag hanging from my leg. One time when transporting me onto the CT table even though I could communicate I didn’t realize they grabbed the bag when dragging me over and it burst. There was no opportunity to talk about any of these details. Breathing was a priority. Bags of pee were unimportant.

I made it back to my ER room with Carol unable to speak very much. I was trying to tell her what I needed but she could not understand. I finally got her to realize I needed the pillow under my shoulders more but she wasn’t strong enough to do it. I said, “Get nurse.” She went looking for one rather than hitting the nurse call buzzer. The hallway was empty. We were both feeling pretty helpless.

She finally found some help and they got me in a good position to communicate again. I just kept thanking her over and over for being there.

The ER doctor who came in to give me my results was different than the one I had spoken to at first. She said that they found evidence of a saliva stone in my mouth. It was apparently blocking my saliva duct in the same way that a kidney stone or gallstone blocks a duct. I had never heard of anything like that. They were going to admit me. I would get a consultation with an ENT doctor in the morning.

I had to remind them that because I use a ventilator, I could not go to a regular room. I told them that they had previously tried to get progressive care to take me but they always refused and insisted I go to ICU. The ER doctor agreed with me that it was kind of a silly policy but I assured her in my experience that there was no way around it. They eventually came to that same conclusion and got me a room in the ICU.

I was soon visited by one of the Critical Care doctors who would be managing my care in the ICU. This was unusual because typically my case is managed by Internal Medicine or as they sometimes shorten it simply “the medicine team.” I didn’t think it would make much difference but in the end, I later concluded it was not such a good idea to be under Critical Care. More on that later.

In my room

It did not take very long to get me a room. I was hoping that Carol could come upstairs with me so that she could make sure that I got my head tilted back properly so I would be able to communicate with the nurses. But it was now approaching 2 AM long after visiting hours and they were reluctant to let her go up. I finally agreed and told her to go home. She would be babysitting the grandkids all day Friday and working Friday night so I told her perhaps I would see her on Saturday and she could bring my laptop or anything else I needed. There was no sense in having Barb or Josh trying to bring my laptop I wasn’t speaking well enough to use my dictation software.

When I got to the room in the ICU I made very certain that everyone understood how important it was to get my head in the proper position so that I could talk and breathe easily. Unlike the situation with the CT technicians, I was able to explain what I needed before they transferred me to the bed.

The last time I was in the ICU, it was with a respiratory inspection in February. I had been experiencing terrible chills and fever. I was in the middle of a very bad spell of chills when they told me, “The first thing we do when you get here is to give you a bed bath.” They do not use particularly warm water and I about froze that last time having already been severely chilled. For this visit, I had a fever of about 100° so getting cleaned up felt pretty good.

At this point, I was anxious to get on my ventilator and get some sleep but I knew that there would be lots of intake questions to answer. The nurse said that since I had just been there a few months ago she could copy most of my information from my previous visit. They had me positioned well enough that I could talk reasonably well so if I did have to answer a lot of questions, I would’ve been able to.

One of why favorite questions that they always ask is, “Do you know where you are?” I really enjoy giving the following standard response… “I am in the ICU of Ascension St. Vincent Hospital W. 86th St., Indianapolis, Indiana, United States of America, the North American continent of the planet Earth which is the third planet in our solar system which resides in the Orion arm of the Milky Way galaxy which is part of the local galactic cluster of the universe.” The nurses get a big kick out of that. The last time I used that line, one of my nurses replied, “What? You don’t know the latitude and longitude?” I forgot to mention that while I was lying in bed at home waiting for the ambulance to arrive, it occurred to me that I had not looked up the latitude and longitude of St. Vincent Hospital and memorized it as I had originally planned.

For future reference it is 39.909 North, 86.197 West L6

It was about 3 AM I was fully settled in and able to get on my ventilator and get to sleep. There is a shift change at 7 AM and I always want to be off the ventilator prior to that. I don’t want to be dealing with a strange respiratory therapist to take me off and I want to be able to communicate with the new nurse who also comes on at 7 AM. So I instructed the respiratory person to get me off at about 6:30 AM. She let me go until 6:45 And I was grateful.

After getting off the ventilator, I could assess my situation. My pain level was pretty much less than one. My tongue was feeling much better. I estimated it was perhaps 80% back to normal. It still felt kind of thick and stiff. I discovered I do not need to have my head tilted back far in order to speak or breathe. That was a relief because trying to sleep with my head tilted back was pretty uncomfortable. It was only because I was totally exhausted that I was able to sleep well for those few hours.

Whenever I have my speaking valve out, one of the ways I can get people’s attention is by ranking a clicking sound was my tongue. I discovered I could not make that sound so I knew that things were not back to normal. After the nurse helped me call home and I spoke to Barb to tell her how I was doing. Then I did the following Facebook live video to let everyone know what was going on with me.

Eventually a female resident from the Critical Care group came in to discuss my case. She said they had called for consultation from ENT doctors who would decide whether or not I needed surgery. She thought that they would be very conservative and not recommend surgery but she could not be sure. I explained to her the difficulty that my mouth will not open very far as a result of my joint contractures. I thought that surgery to get under my tongue will either involve going up through my chin or would require pulling teeth neither of which would be any fun. Still, we had to wait for official word from the ENTs. She said that later in the morning she would be back for rounds with the entire Critical Care team including the attending physician.

They would allow me to have my regular medication as well as an oral antibiotic (IV not necessary). However, I could not have any food or other liquid in the event that they might want to do a procedure on me later in the day.

I tried to occupy my time by taking a nap or watching TV. With my head still tilted backward somewhat I couldn’t really see the TV but I just listened to MSNBC until I couldn’t take it anymore. It was wall-to-wall coverage of the aftermath of the tragic school shooting in Texas. I never did get a map and I finally had the nurse turn off the TV.

Sometime in the late morning, the Critical Care team made their rounds but I did not get to speak to them. They stood in the hallway and talked about me at a level I could not hear and with no opportunity to ask follow-up questions. That made me extremely frustrated. That’s the major problem with being in the ICU when you aren’t really very sick. There are accustomed to patients who are not able to participate in their own health care decisions. Although I had had such issues with the Internal Medicine people not communicating with me well in the past, it was much more blatant being under the purview of Critical Care. At least with Internal Medicine, I did get to see the attending physician during grounds on previous visits and ask my questions and express my concerns.

From time to time throughout the day, my nurse tried to contact critical care to see why ENT had not been to see me yet. Initially, they were surprised I had not yet heard anything, and then they tried to no avail to get any action from the ENT group. Meanwhile, I haven’t had anything to eat very little liquid since 4 PM the day before. The nurse tried to get my G-tube formula ordered so it would be ready once I was cleared. She could not do that.

Finally, at 3 PM the resident returned to tell me that they had finally gotten in touch with ENT and that they had left the building. There would be so further action today and they promised they would be in to see me “first thing tomorrow.” I was furious that we had wasted the day. I told her I wanted to eat ASAP and that considering none of the medication I was getting was via IV I wanted to be discharged immediately tomorrow after the visit from the ENTs. I was confident I would not be getting the surgery. She agreed. They would continue with oral antibiotics and some steroids to try to bring down the swelling in my tongue further and as long as there was not going to be surgery, I could go home Saturday.

If I had been on a regular diet, the next step would be to call the food service and get me a cheeseburger. But when you are on G-tube feeding it doesn’t work that way. The food has to come from the pharmacy. The resident has to prescribe it like a drug. They can’t do that until I’ve been evaluated by a dietitian to get the proper “dosage”. This isn’t something new. I’ve been getting this same nutrition three times per day for six years. I should not have needed clearance from a dietitian just to eat my regular meal.

The last time I was in the hospital I saw the dietitian and after looking at my usual intake she recommended that I add a multivitamin to my diet. That was a useful suggestion and I did so. This particular dietitian was also going to recommend that when I got home, I add 30 mL of protein supplement to my diet. That wasn’t something she was going to insist upon immediately. Again, it was a useful experience. But it did not need to delay me getting fed. By the time her recommendations made it to the resident, the resident wrote the orders, the pharmacy sent the formula, and the nurse was able to feed me it was 5 PM. A full 25 hours since my previous meal.

In addition to talking to the dietitian I was also visited by the case manager and we began making arrangements in advance for me to go home the next day assuming that I was not having surgery. She even suggested we go ahead and schedule my ambulance ride which I appreciated. The last time I tried to get out of the place we ordered an ambulance around noon and it took over eight hours to get there.

The evening shift change came at 7 PM and I got acquainted with my new nurse who was nice. Also met the nighttime respiratory therapist and made plans to get on my ventilator at about 9 PM. I was able to get another feeding just before I got on the vent. I got on the vent a little after nine and got to sleep pretty quickly.

When I’m on the ventilator at home, I can operate my iPad with pushbuttons and message Barb or Carol if I need anything. I also have a buzzer that will wake up everybody if they don’t hear my messages. Once they are in the room, I have a voice generating program called Cough Drop customized with various phrases that I might use such as, “need suction”, “raise bed”, and when all else fails one that says, “Take me off the ventilator so I can talk.” In the hospital, I don’t have that capability.

At one time I had a box that would let me do some of that kind of stuff if I had my iPad and/or laptop in the hospital but keeping such equipment on the hospital table in front of me overnight is difficult. Keeping my pushbuttons comfortably in my hand in the hospital is problematic. And right now that particular box needs a little work. I just didn’t have time to pull everything together before coming to the hospital. So I was going to have to rely on other means of communication.

I always explain to the nurses and the respiratory people my means of communicating when I can’t talk. I’m unable to shake my head yes or no so I wiggle my eyebrows up and down to mean yes and I twitch my mouth left and right to mean no. Even when I haven’t been able to explain these signals to nurses ahead of time, most of them have been able to recognize that a vertical motion in my eyes means yes and a horizontal motion in my mouth means no. Other systems such as blinking once or twice for yes or no are impossible to decode without already knowing the system in advance.

In the past, I have told the nurse in the event you can’t figure out what I want via yes and no questions, simply deflate the cuff of my trach and I will be able to talk briefly. But with my tongue messed up, I wasn’t sure that was going to work and I was pretty sure I would be trying to get as much sleep as possible. I didn’t even bother giving the nurse that option because I wasn’t sure it would work. Furthermore, as I already explained, my way of getting someone’s attention when I can’t talk is to click my tongue. With my tongue still swollen, I couldn’t do that.

I woke up a couple of times during the night. My blood pressure alarm went off a few times. As an experiment, I tried mouthing the words “BP okay?” while looking at the blood pressure monitor. Much to my surprise it only took two attempts for the nurse to correctly read my lips. She reassured me it was okay. Later that night I saw her and the respiratory therapist poking at buttons on my ventilator. I was able to ask, “what’s wrong?” Again, it only took a couple of tries for her to be able to read my lips and tell me they were just curious about what my settings were. In the morning, once I was off the vent I told her she was the absolute best lip reader I had ever encountered. She said that she had previously worked in the head and neck unit and had gotten a lot of practice there but was out of practice now that everyone was wearing masks.

The last day

With the exception of briefly waking up a couple of times as described above, I slept pretty solidly from 9 PM until 1 AM. After that, I was wide awake. One positive development was I discovered I could once again click my tongue. That told me it was back to normal.

I couldn’t get back to sleep. I just lay there thinking about how angry I was over the way things had gone the day before. I wrote the speeches I would be giving the doctors come morning. At about 5 AM, I gave up trying to sleep and told the nurse I wanted off the ventilator. Again she had no difficulty reading my lips which was amazing.

Of course, I was back under orders for no food or water until a surgery determination was made. The nurse asked me if I wanted to clean up. I had not been washed since that bath at 2 AM the night I arrived. I was surprised she offered so close to the shift change. She had the time and some help so I got another bed bath. It helped pass the time.We also passed time just talking. I told her about my unsuccessful efforts to write sci-fi.

At 7 AM there was a shift change. My new nurse remembered me from a previous visit. She had already heard my joke about my location in the universe so I told her I had intended to look up the latitude and longitude but didn’t have the opportunity. I promised if I ever saw her again I would let her know the exact coordinates. We got to talking about the upcoming race. She had grown up in Speedway and talked about the fun they had encouraging people to throw empty beer cans in their yard when she was a teenager. They would collect them and get money for recycling.

A different Critical Care resident dropped by about 9 AM. She didn’t know when the ENT doctors would be by but she reassured me that if things went as planned, I could definitely go home. I gave her an earful of my complaints about the way things went the day before including not being able to be a participant in the rounds discussion with the attending. She explained that the attending preferred to do rounds in the hall but she promised she would speak to me immediately afterward to keep the communication going. Not exactly the kind of response I wanted but it was the best I was going to get. That’s why in the future I’m going to insist that my case be managed by Internal Medicine and not Critical Care. They just aren’t equipped to deal with a patient like me.

Two female doctors from ENT finally showed up a little after 9 AM. They tried unsuccessfully to look in my mouth. They tried unsuccessfully to stick a finger into my mouth. After a brief conversation, I told them I would follow up with my own ENT and that they should send me home. I would get more antibiotics and steroids for a couple of days but I was free to go.

Soon afterward, I got word that the ambulance would not be available until 6 PM! This was an ambulance we had already scheduled a day prior and they still couldn’t be there until late in the day. God only knows how long I would’ve been there if we had waited to schedule it. The nurse helped me to call Barb and tell her I was coming home it would not be until after 6 PM and that assumes they were on time. I was free to eat again. Soon, I got the word they had called a different ambulance company which would be there about noon. I had to call Barb back again. I was very happy.

I was starting to get a backache from lying in bed for so long so I had her give me a Tramadol for the ride home. We packed the underwear I had worn into the ER. Picked up some supplies for free. I got another feeding at about 11:30. They arrived at about 12:30.

I no longer had to worry about such things as getting my head in the proper position. They had no difficulty transporting my ventilator home which would save Carol or Josh a trip up there to pick it up. Unfortunately, somewhere along the way, we lost part of my ventilator hose. I don’t know if a nurse or respiratory person threw it away or if it fell off in route. I was short on supplies at home so I was really upset that we lost part of my tubing. I got by okay.

This time, I was able to have a nice conversation with the EMT on the way home. One of the things I asked him was if paramedics ever really did an emergency trach in the field. I told him about my tongue swelling and how much trouble I would’ve been in had I not already had a trach. I wondered if they ever really did that, or if it was just something on TV or in movies. He said he thought they could but it would be extremely rare.

When I got home, I discovered there was other tubing missing. The valve on the end of my G-tube had been removed. Apparently, the nurse just put my feeling directly into the G-tube without using the valve. I was fortunate that I still had one in stock.

Much to our surprise, a strange home health aide showed up at 6:30 PM to put me to bed. My regular evening aide had called off and they sent a replacement without telling us. Somehow the hospital had told them I was coming home. Still, I had only been home a few hours and it was straight from the ambulance to bed. I did not need anyone to put me to bed. The next day I gave the agency an earful about don’t send people unnecessarily and don’t send a stranger replacement without giving us a heads up!

Memorial Weekend

The next day, Sunday, was race day here in Indianapolis. Last year, I did not have a home health aide available on race day and I had to watch the race in bed on my little TV. I was anxious to be able to get up after several days in bed and to be up to enjoy the race on a big TV. Another reason I wanted to be sure to get up is to watch the military jet flyby at the opening of the race. My house is less than half a mile from the Speedway. I love to go out in front of my house, look back east towards Georgetown Road, and watch the jets fly over.

My home health aide, a wonderful woman named Tre’Sean, fought her way through the traffic to get here and get me up and dressed. Not only did she suffer the Greatest Spectacle in Traffic Jams, but she had also recently been having problems with severe pain in her shoulder. We got her some Tylenol and she was able to push through the discomfort although it was really rough on her by the time she was finished.

Typically, the Indy 500 is blacked out on local TV. However, I had subscribed to the NBC streaming service PeacockTV in the hopes that it would not be subject to blackout. I had subscribed for just one month during the Winter Olympics. I canceled and then resubscribed in early May so that I could watch their wall-to-wall coverage practice and qualifying including stuff that was not available on TV or cable. The local TV station of course would not tell you that you could subscribe and watch the race online. They wanted to make sure that you reached the time delayed replay of the race that evening.

When 11 AM rolled around, I logged in and was thrilled to see that coverage was on despite the local broadcast blackout. I had prepared for the possibility of using a VPN to hide the fact that I was in Indianapolis but that was not necessary. That means that friends and family who are willing to pay $4.95 but did not have the technical expertise to use a VPN to spoof their location would be able to watch the race. I quickly posted a Facebook message telling everyone that they could get the race on PeacockTV. I also Sent a couple of private messages on Facebook messenger to let friends and family know how to get the race in case they missed the public post.

One of the people who thanked me for posting that information is a guy named John who bought out our share of our cabin on Cordray Lake in Brown County. He sent a photo that they had set up a flatscreen TV on the boat dock by the lake and they were watching the race on Peacock thanks to my tip. I presume he was using his phone as a hotspot or streaming it on his phone and Chromecast to the TV. I had to laugh hard. I remember for years and years we would go to the lake on Memorial weekends and try to watch the race. If we went up on the roof and rotated the antenna sometimes we could pick up a very fuzzy picture out of Louisville Kentucky on a 25-inch analog TV. In later years, the only internet I had was dial-up over a phone line that wasn’t fast enough to stream music let alone HD TV. Technology sure has come a very long way.

I also posted a phased message here letting people know I was going to do a Facebook live video of the flyby from in front of my house. My video which is embedded below did not turn out very well. But check the link to this post by clicking the Facebook icon before this sentence. My cousin Kathy who was at the race sitting on the main straightaway got a phenomenal video of the flyby right overhead.

The National Anthem was scheduled for 12:18 PM with the flyby at the end. I started my live stream at 12:14 in the house because I can’t see my phone in the bright sunlight. As is our tradition, we were joined by my neighbor Nick and his daughter Madison who always enjoy watching it as well. Much of the video is us standing around waiting for it and Barb and I talking about our recent hospital visits. When the Thunderbirds finally came by, they sort of snuck up on us. Usually, we can hear the jets coming from a long way away. They were also unusually low and I was just barely able to see them above the roof of my garage. The location of my iPhone mounted on my wheelchair armrest was even lower so the video didn’t really turn out very well. The actual flyby occurs at about the 11:50 mark in the video.

I got back in the house to watch the rest of the opening ceremonies and much to my disappointment, the Thunderbirds made another pass at the singing of, “Back Home Again in Indiana” and I missed it.

Somewhere along the last several paragraphs, you’re probably asking, “What does this have to do with Chris’ hospital visit? In many ways, nothing.

I wrote this part because of what happened next. I found myself getting very emotional at the opening of the race. It was fantastic to see a full crowd again after two years of the pandemic. The weather was perfect. I’ve gotten to watch a great deal of practice and all of the qualifying this year. I began to ask myself, “Why is it so important for me to go sit out in the middle of my street to watch some airplanes fly over?” I found myself with tears in my eyes when I realized the answer. Watching those planes fly over each year is the last remaining connection I have to the event. Somehow, I feel like I’ve participated in the festivities by watching military jets fly over on Memorial Weekend. Last year, when one of my favorite drivers, Helio Castroneves won his fourth Indy 500, I had to lay in bed and cheer with tears in my eyes. This year I was up. The race was back to normal. I got to see the flyby not just hear it.

I thought about the first time my dad took me to the track when I was five years old. I thought about the countless days I had spent at the track in my college years roaming around Gasoline Alley with my video camera talking to drivers and mechanics. I thought about the years spent watching the snowy picture at the lake. I thought about the first time I got to actually go to the race. I thought about the article I wrote for Indianapolis Monthly Magazine about that first experience. I thought about the fact that under the guidance of new owner Roger Penske who is my hero, the track would finally get to grow and evolve under his expert guidance. Indy was back. I was there to witness it. And all of this came within a few days of one of the most terrifying and frustrating medical experiences of my life.

So I cried for a few minutes at the beginning of the race and then I enjoyed every minute of it.

Medical Follow-up

Monday was the holiday and I spent time catching up on things I’d missed while in the hospital. Tuesday I got on the phone call my own ENT doctor appointment. I will see him Monday, June 13.

Then something really weird happened.

My mouth had been feeling okay since I got home. Throughout this experience, there was a tiny place under my tongue that felt like a little soft bump almost like a tiny polyp no more than a couple of millimeters in size. In the days since I been home, that spot turned hard. When brushing my teeth Tuesday morning, I had my aide gently brush under my tongue. The tiny hard place came loose and I was able to spit it out. It looked to me like a scab but it had a hard core in it. I don’t know what it was but underneath my tongue feels 100% normal now.

I will have to talk with the ENT to see what he thinks but this whole thing might be over with!

I had a couple of days of antibiotics and steroids to take. The steroids made me very jittery Tuesday afternoon and evening. I went to bed early and decided to stay in bed Wednesday. I quit the steroids one dose early. I finished out my antibiotics despite some intestinal issues they caused. I will spare you the details. As I am completing this blog, it is Thursday evening and things are pretty much back to normal. No mouth pain. No more intestinal issues.

My only problem now is that my aide with the bad shoulder got into a disagreement with her boss for taking time off. She ended up getting fired. Now I have to train a new aide. I’m really going to miss the previous one. We will remain friends even though she no longer works here.

So, that was a story longer than a quick Facebook message. I hope you enjoyed it.