My Initial Reaction to My Approval for Spinraza

I am writing this on August 15, 2019, and I just received word from my doctor that I received insurance approval for a year of Spinraza. Without getting too technical, this is essentially a treatment that will ideally help people with my condition, Spinal Muscular Atrophy, slow the progression of our always increasing muscle weakness, and maybe even began back a little bit of function and strength. The results vary obviously from person to person, but I am incredibly excited to be able to have the opportunity to move forward with this treatment. My mind is racing right now with about a million different things, so I apologize if this post seems rather disjointed compared to my normal style where I tried to organize my thoughts a little bit more coherently.

First, I am not an overly emotional person as a general rule. No, I did not cry when I got off the phone with my doctor. But, I will tell you that I did feel a little bit of emotion. SMA is an interesting condition because you are fully aware of what is going on with you. Every year, you lose a little bit of muscle strength. That’s just the way it is. In general, I wouldn’t say that my ability to perform my everyday functions has changed all that much for a long time. Yes, I need help with a lot of things. At the same time, I’m still able to help myself eat, drive my chair, use my computer, be at work relatively independently, and generally navigate the world with plenty of help, but with a semblance of independence.

Understanding that SMA is a progressive condition, I have to admit that I have wondered when it stops or how far it goes. I drive my chair every day a lot. My muscles are very capable of doing that, and like most muscles for anybody, you lose the ones that you don’t use. I use those muscles quite often, so I don’t know that I would ever lose them, but it is a very real concern for someone with SMA. I don’t dwell on this, but I would be lying if I said I never think about that type of thing.

To think that there is a treatment that might help me remain roughly where I am right now is surprisingly encouraging. Of course, I would love to see my muscles improve. I would love to gain more functionality. Who wouldn’t? That said, I don’t think my life is all that bad right now. I am content with where I am at, and even if Spinraza does nothing more than maintain my level of status quo right now, that would remove something that I seriously have worried about.

Another thing that it is really weird to think about is that there is even a treatment for SMA. It is not a cure by any means, even if applied to infants at a very young age. I am trying to be realistic and not expect anything insanely amazing to happen as a result of this medicine. At my age, the results are most likely maintenance with perhaps a little bit of improvement, but there is plenty of room for a placebo effect and confounding variables in that little bit of improvement.

However, I have lived the past 28 years without the prospect for any type of meaningful treatment. You obviously do what you can. I get stretched out every day. We go to the swimming pool to try to help my flexibility and mobility. I know some people do much more intensive physical therapy regimens than I have ever done. However, all of this largely delays the inevitable, knowing that the decline is going to continue at 3%-5% every year. Not to come back to this point again, but it blows my mind to think that there may be a potential option to remove this reality from my mind. That is what I have been feeling for most of the afternoon and night. It really is a paradigm shift from where I am used to being.

Frankly, it is making me look at SMA differently. Again, I’m not delusional. I know my life will probably change very little if any from the results of these injections. I know that. But that’s the point. Change for someone with SMA is almost always negative. You very rarely, if ever, get better. The fact that change can be slowed and ideally held at bay is unbelievably huge. It is something that I don’t know that people without SMA can necessarily wrap their heads around. The closest comparison is probably the reality of aging. As people get older, they know that, even if they do everything they can to try to stay in shape and live a healthy lifestyle, the reality of old-age will eventually begin to wear out their muscles and reduce their functionality.

Imagine how you would feel if there was something that would be able to help you fight off the effects of aging? It is not a great parallel or anywhere near exactly the same, but maybe this can help you understand a little bit more how I feel about this prospect that I may be able to maintain my strength rather than lose it as rapidly as I do. It is a big deal.

I guess that is my most immediate gut reaction to this development. Obviously I’m grateful to have the opportunity to begin making plans for my initial loading doses. We still have some work to do to figure out how it is going to be applied and injected into my spine. Yes, I still am not a fan of needles for anyone who was wondering. I’m not looking forward to that part. But, this gives me a sense of potential stability. I value stability an awful lot in most areas of my life, but up until this point, the possibility of SMA being stable was virtually nil. I am pretty good about accepting that reality most of the time. I don’t dwell on it very often because it is something that is so removed from my control that there is really no reason to actually worry about that. That said, now thinking about the impact that this medicine may have, it is reopening these thoughts in my mind.

I would love to have some additional strength to do something with. I don’t know what I would want to do, but it would be very useful. However, there is definitely something even deeper at play here. It is an understanding that something could happen to me which is unbelievably good and changed my life by making my life so that it changes less. How weird is that? That’s the contradiction I feel grateful to be considering tonight.

The Love of Many shall Wax Cold

“And because iniquity shall abound, the love of many shall wax cold.” The latter part of Matthew 24:12 came up twice in the same day, so I thought that might be interesting to talk about together today. After all, Jesus says this as part of his response regarding how his disciples will know when the end of the world has come. When I am not going to do is turn this into a debate regarding the various ways of understanding Revelation or whether I believe we are in the end times, approaching the end times, beyond the end times or something else entirely. Rather, I want to talk about this idea of love of many waxing cold. I think that we see this abundantly clearly in our world right now.

As our world becomes further separated from God, the definition and source of the love, is it any surprise that our world will continue to wax colder? That may seem to be the obvious solution here, but we have to remember that we are always separated from God in our unrighteousness until we come to the foot of the cross for reconciliation. Naturally then if it is worth mentioning that the love of many will wax cold, that must mean that it is not individuals who will get any colder. However, more individuals will be cold. In other words, fewer people will be drawn to the love of Jesus Christ to be rescued from their frozen state. The difference is not in the degree of coldness but rather the number of people who will be cold.

It is our mission then as Christians to help people escape from their frozen state. We're supposed to help bring them to the love of Christ. We're supposed to help warm them up to continue the metaphor here. That's a challenge though because the rest of this passage in chapter 24 talks about all of the chaos that is going to be taking place in our world. People will be full of uncertainty, fear and iniquity as we see at the beginning of verse 12. These tendencies don't lend themselves towards a wholehearted embrace of Christianity necessarily. Many will also be deceived as we see earlier in the chapter, so they will be buying into some type of ideology that will be directly contrary to the Christian message. How do we break through all of these areas to try to communicate the Gospel to a culture that just doesn't understand?

This is where the power of cultural apologetics comes into play, and this is why these so important for all of us to recognize why stories matter. This is not just a question of stories as a means to an end. We're not trying to simply use stories. Rather, I'm trying to suggest that stories, by virtue of what they are, provide an avenue to share the Gospel with themselves. We don't want to turn them into weapons. That is how we end up with many manifestations of Christian, Amish romance novels or Christian movies that are often times lacking in quality. We try to force stories to be something that they are not. Rather, I am trying to suggest to that by telling good stories, we actually have a way to let the world see the Gospel through the story even if we do not explicitly spell it out for them in some giant altar call message at the end.

If one of the significant problems with our world is going to be that love is going to wax cold, then we need to help people find that love that they are going to be or are already missing. They are trying to find it in so many ways, but many of those ways seem to be unfulfilling. It is not just enough to tell them what love, for example, looks like. Instead, we have to show them. It has oftentimes been said that your testimony is the best way to show people the Gospel. That's true. The testimony of a changed life is powerful. But, it is powerful because it is a story. People connect to stories. That's how we get people to want what we have. That's how we get people to realize there is true love they are missing.

It is not just have to be my story though. There are so many great stories in the world, and they can communicate the Gospel truth as well. The radical part is that some of them even do it unintentionally. Some authors have no intention of pointing people towards for Gospel, but they put truth in their stories. All truth is God's truth. This does not mean that everything that people call truth is God's truth. However, if something is true, then it is true because God made it that way. Please understand that differentiation. I'm not taking the off the deep end into relativism.

Notice how this entire exercise ends. We use stories, either our own or other stories, even fictional ones, as a way to help people see truth. As people made in the image of God, they do desire truth. We are fallen and separated from God as I mentioned above, but it seems that many people end up coming to Christ when they realize what they are lacking and simultaneously see something that portrays what they desire. In this case, it seems like love is waxing cold. People want true, authentic love, and they chase it wherever they can, only to ultimately end up disappointed and wanting more.

I know this is kind of a nontraditional approach to apologetics, but if you want to wake people up and make them not so cold anymore, then we need to help them remember why they want to warm up in the first place. That's what we can do.

The Problem with Individualizing Truth

I just heard an advertisement that talked about discovering “my truth.” To me, this seems to be somewhat of a contradiction in terms.

Obviously when we talk about something being mine, it belongs to me. My life is my life. My vehicle is my vehicle. It belongs to me. It is in my possession. Simultaneously, it is not owned by anyone else. That is an important thing to recognize. This obviously does not mean that other people cannot observe my life, talk about my life, judge my life, influence my life or change my life. However, they cannot possess my life because it is something that is mine. Going back to the vehicle example, someone can take possession of my vehicle, but at that point it ceases to be mine. If I sell you my car, it has become your car and is not mine anymore.

Something that is mine does not necessarily have to be exclusively mine. America is my country. You can also legitimately say that America is your country. America is something that is external to us both, but we can both say that we possess it and have a legitimate claim to it at the same time. It is not the type of thing that can only be possessed by one person or another. It is a different type of possession of sorts.

But these types of entities are often times not things that you actually possess. America is my country, but I do not own America. You do not either. Still, it is something that we are part of. It is some type of collective enterprise, and it is a kind of ownership I suppose. At the very least, it is a part of a type of corporation for lack of a better word. There are many owners who have an interest in the overall project.

Now thinking about the word truth. Obviously that means that something has a quality of being true. Any idea may be the truth. We might speak the truth. We might avoid the truth. The thing about truth is that it seems to fall into the latter category. It does not have to be, and does not seem to be, true for only me. The fact that the sky is blue is not just my truth. It is more like America being your country and my country. It expresses a true quality about the sky. It is not just my truth. You also possess that truth because the fact of the matter is that the sky being blue is external to you and I. It is truly blue in its composition, so that is not something that only I recognize. The fact that I said the sky is blue does not mean that you cannot say it. When I own my car, it is only mine. When I recognize a truth about the outside world, it is the other kind of fact. We can simultaneously observe the same thing and come to the same conclusion based on the evidence.

Fascinatingly, when we put together my truth, truth tries to become the first type of fact. So many people talk about speaking their own truth, but that truth may be entirely foreign to what anybody else observed in the world around them. We are told that is not right to challenge someone else’s truth because that is somehow offensive. However, it seems that things that belong to the category of truth have the quality of being true. When we talk about truth, it is typically something beyond ourselves that we observe. We discover something about the world, and we know something is true because other people see it as well. I know it is not just my mind playing tricks on me because other people recognize that as well. This is not to fall into the trap of blindly following the majority, but if the truth is actually true, that it has a quality that expands it beyond myself. It is not just by truth. It is the truth. It is a thing that has qualities, and one of those qualities is being true.

I know that this seems like a rather ridiculous exercise, but this is really very difficult topic in our world right now. We talk a lot about truth, and we have people who are discussing how they have their own truth while other people are saying that they have their own truth. Those truth claims contradict, so one of them cannot be true. It is simply the law of non-contradiction at play, and it seems like common sense like I said above. Rather than assuming that truth is a quality that something has, the modern perspective is to bring truth to the human level. Truth is something that we apply to a particular topic. That makes a lot more sense of when we talk about something being my truth. It can be my truth if my truth is something that I give and impose on it. I add the level of significance.

Overall though, we realize that this type of individual definition of truth cannot be true unless we redefine entirely what truth itself actually is. Unless we are going to say that truth is something that I possess and no one else is capable of possessing simultaneously, we have to recognize that there is something external that people can observe and possess together. If we do not do that, then we have lost a vital part of our public discourse. If we entirely internalize truth as a personal experience that we give to things rather than something that things have in and of themselves, then we have no common ground. At best, my truth coincidentally overlaps with yours, but nothing says it has to, and there is no way to determine anything. We cannot come to any conclusion. Our society can only function if we have the capability to discuss things and work out our differences. If we individualize truth in this manner, I fear that we will lose the capability to do that.

Missing the Signs

Let’s be entirely honest here as we talk together. How good are you at picking up signals from other people? I like to think that I am relatively perceptive at times, but there were other times when I feel like something ought to be so obvious, but it just goes right over my head.

I mention this because sometimes I am tempted to think like this regarding people who are not Christians. The existence of God seems not only self-evident to me, but it also seems to be reasonably true. I think the testimony of history supports the resurrection of Jesus Christ, and because of that fact, there is even more evidence that the Christian God is the specific God that exists. It seems so clear to me. The signals are right there, and I pick up on those right away.

But then I think about my relatively awkward set of social skills. Sometimes people talk about things that I feel like I should pick up on, and I just do not. For whatever reason, the implications of whatever they are putting forward just don’t seem to square up in my mind, and I entirely miss the cue or reference. I sometimes wonder if that is kind of what it is like for non-Christians. Is it just a failure to pick up on the clues?

Don’t get me wrong, I entirely think that we are all responsible for our own decisions and have all fallen away from God based on the wrong choices we have made. No one is perfect which is why the free gift of salvation from Jesus Christ is so vital. That said, I really can’t help but wonder if there are some people who simply just don’t get it. They don’t see the heavens that declare the holy God. Instead, they see evidence that declares the glory of nothing. Instead, they just portray the consequences of random chance. They are still responsible for the choices that they make, but for whatever reason, they are just missing out on that signal from God.

Of course, Romans 1 speaks about suppressing the truth in unrighteousness. That suppression of truth would certainly lead to the failure to recognize the signals from God. After all, it is hard to recognize truth if you’re busy denying its existence. Imagine the ultimate awkward social situation. Someone is trying really hard to make you recognize something. Normally for me, there is a topic that should not be brought up for whatever reason. Someone is trying really hard to let me know that I should avoid that topic, but they can’t outright say it, so they keep hinting in hopes that I will pick up on the hint and not bring it up. Inevitably, what do I bring up? That’s right. Exactly what I should not bring up. It is certainly less than ideal for me, for the person who is trying to help me avoid stumbling into that position and for whatever person we were trying to avoid the topic for. Despite all the evidence that is pointing me towards the topic I should avoid, there is just a separation. I just do not understand.

I think that ought to inform our apologetic approach then on some level. Especially as our culture and the West becomes less culturally Christian, some of the shared assumptions are going to go away. Because of that, some of these hints that ought to help turn people towards God simply are not even on the radar. If our culture kind of understood the concept of sin, then we could talk about sin, and even if they did not believe in God, at least they would do what we are talking about. Right now, I am really not convinced that using that word is necessarily a way to connect with our culture. Not that there is anything wrong with the word sin, and it is a very important word. However, how we explain what sin is and the language we use needs to be accessible to our audience.

It is certainly not about watering down truth. We should never do that. We should not hesitate to call sin evil for example. That’s what it is. It separates us from God. We don’t want to make people think that it is okay. Rather, what I am saying is that the way we describe what sin is may require updated language for our time or at least a willingness to explain a term such as sin. That is the alternative of course. I say that sin separates us from God. Someone else might ask what sin actually is. I need to be able to explain what it is in the way that this person will understand it. Understanding is key. How can they learn to avoid sin or hate sin if they don’t even know what sin is?

I think this is vital for all of us as we think about communication and missing signs. There are lots of us who are quick to assume that the culture just doesn’t understand us. I am one of them, and I think it is true. By and large, secular culture does not understand Christians or Christian language. However, I expect them to pick up the implications and the signs that I am giving when I talk about Christian things. It just goes right over their head. It is not for lack of knowledge, insight, intelligence, or anything else. Rather, I would contend that there is a large break in word usage that leads to a lack of understanding. We need to be able to communicate the full truth with people around us, but it does not do very much good if they do not have any concept of what we are talking about.

You might be like me and not be very good at picking up signs. If you are like me, you would kind of hope that if you are missing the signs, someone will come along and read you into the situation. It kind of makes me think about CS Lewis’s The Silver Chair. Aslan had provided the children with a variety of signs to help them rescue the prince. They kept missing them largely because of their own forgetfulness, defiance, and frankly sinfulness. When they finally get back on track, they are very grateful. They feel better because they have gotten back to where they should have been in the first place. It feels good to be able to pick up signs.

As Christians then, let’s not be people who keep dropping signs that other people are going to miss. Instead, if they seem to be missing the signs that we are putting out there, maybe we should be a little bit more intentional, straightforward and relevant to the world that we occupy today. Never water down truth. Ever. That said, make sure the audience we are talking to actually understands the concepts we are trying to communicate with our language. We don’t change the concept, but we may need to use language that people understand.

Responding to "Against Pop Culture"

My attention was recently turned to an essay written by Dr. Brad East entitled “Against Pop Culture” on Mere Orthodoxy. Before reading any more of what I have written here, please read and consider Dr. East’s essay. Perhaps I am not interpreting it in the light in which he intended although I will attempt to do my best to understand and critique his essay on its own terms.

East lays out his thesis as follows, “The boring fact is that Christians like pop culture for the same reasons everyone else does—it’s convenient, undemanding, diverting, entertaining, and socially rewarded—and Christians with an audience either (1) rationalize that fact with high-minded justifications, (2) invest that activity with meaning it lacks (but ‘must’ have to warrant the time Christians give to it), or (3) instrumentalize it toward other, non-trivial ends.”

This is a classic false dilemma. The fallacious technique assumes that it is only logically possible for Christians to “be enthusiastic consumers of pop culture” for these three reasons. It becomes a fallacy if there is a fourth reason that may decide to consume popular culture. Quite simply, Christians may decide to consume popular culture because it can serve as a bridge to show the Gospel with other people, one of the most important things we can do while we are here on earth.

For all I know, East may consider this to simply be me falling into his first option. He might say that I am making up some kind of high-minded justification for Christian engagement with popular culture. With the argument I am about to make, he might say that I fall into his second option. Maybe I am imbuing popular culture with meaning it does not have. In fact, he also might even say that I could fit in his final classification my arguing that I am using popular culture as an instrument towards something that we, as Christians, all agree is certainly not trivial.

However, I would contend that this is an unnecessarily bleak way to view any engagement with popular culture. I would agree that Christians must use discernment. I’m not arguing that all popular culture ought to be consumed. Bluntly, some of our contemporary American culture is garbage.

Instead, I will argue that even culture created within a dark society is created by individuals created in the image of God. While Romans 1 tells us that unbelievers suppress the truth in unrighteousness, I have found in my experience that this suppression sometimes has momentary lapses. What I mean by that is that there will be times that nonbelievers long for the truth. They seek to suppress those desires, but those desires find their way out.

Perhaps an example might help illustrate my point. George Lucas does not hold traditionally Christian beliefs although he was raised as a Methodist. The Star Wars universe is much closer to Buddhism than it is to Christianity. That being said, it is hard to deny that you can find many values that are consistent with Christianity in that series. You can find themes of love, nobility, self-sacrifice and many others. These are not uniquely Christian values, but they are values that are consistent with Christianity that we find in the Star Wars universe.

How did they get there? George Lucas created stories that had those values embedded in them. Remember that he is a nonbeliever. He indeed falls into the Romans 1 population that is suppressing the truth. Perhaps from his upbringing, or perhaps from somewhere else, he came across some values that he thought were good to put into his stories. For us who believe in the objective goodness of God, we recognize why these beliefs are good. Lucas does not have that same solid foundation embedded in his worldview which seems to be some type of spiritual mishmash. Why do we have someone who is suppressing the truth in unrighteousness nevertheless building elements of truth into his stories?

Broadening this discussion to movies in general, Lucas is certainly not alone. There are tons of non-Christian filmmakers who intentionally or unintentionally build objectively good Christian values into their films. The whole movie may not reflect these themes, but you still see elements of objectively good truth shining through. This is why that suppression is cracking and vulnerable. The nonbeliever suppresses the knowledge of the truth of God. This is true. What the nonbeliever has a harder time suppressing though are those desires to want what God originally designed humanity to want, chiefly Himself and His objective goodness.

Nonbelievers betray this vulnerability often. Even in something as ridiculous as horoscopes, we see people looking for purpose, meaning and structure in their lives. Even if they are in chaos, they want something that tells them that not only will everything be all right, but someone is holding the future. Our politics betray this vulnerability. Justice is a very popular term in our current discourse. They do not realize the reality that justice is of God, but they ultimately want there to be justice. It is a genuine longing for something that is objectively good even if there is interference courtesy of the nonbeliever’s suppression of truth.

If these longings are present in the film, I would suggest that there is then a dual purpose to watching film. First, as a Christian, with proper discernment, film can help us celebrate our longings as well. Is it wrong for me to enjoy the reconciliation at the end of Remember the Titans? It is not a Christian movie, but I am able to enjoy the goodness portrayed on screen. I know that my longing for reconciliation will one day be satisfied in eternity whereas the nonbeliever would not, but it is certainly not a bad thing to celebrate that which is good.

Secondly, considering beauty, I do not know that I have seen a movie better suited for the big screen than Inception. The cinematography was simply remarkable in my opinion. Again, it was certainly not a Christian movie, but I do not think it is bad to look at something that is beautiful. I know it will not ultimately satisfy any longing either I or the nonbeliever have for true beauty. We cannot experience that yet. However, I again do not believe it is wrong to enjoy beauty for its own sake. Humans were designed to enjoy beauty.

For the nonbeliever, celebrating these good longings also will point them towards something, but they will not know what it is necessarily. They might feel a desire for reconciliation or real beauty. This is not meant to instrumentalize film to use East’s word. Instead, it is simply a recognition of reality. That suppression cracks every now and then. Films do not only show complete depravity. Sometimes they bear testament to the good, true, and beautiful for no other reason than the fact that the storyteller has a desire that he or she cannot explain but wants to put in the story.

Is it possible that God can use instances like this to bring people to Him? He did it in Acts 17. The apostle Paul used popular philosophers in the Greek world to speak to his audience of philosophers on Mars Hill. He used the culture that his audience would be familiar with to explain the Gospel to them. Is it not possible that God can use our culture not as an instrument but rather a bridge? The Gospel is the only thing that will bring salvation. The culture cannot do that. However, the culture can help people understand what the Gospel is saying. After watching a portrayal of selfless sacrifice on screen, does it not help someone understand a little bit more of what Christ’s selfless sacrifice meant for us? It would be an imperfect reflection. It is not even close. That said, it is something, it can be that lightbulb moment that can make an eternal difference.

Consequently, I think that we have found our fourth option that illustrates why East to put forward a false dilemma. I tried to avoid being high-minded. I don’t know how I can dispute that kind of subjective criterion, but I don’t think I have been.

I don’t think that I have built any meaning into film itself intrinsically. Rather, I have only pointed out the reality that certain good qualities are in films, and those qualities can possibly correspond with what God has made objectively good. This does not mean that outside of God people are good or anything like that. Instead, it is simply a recognition that their God-given desires slip out of them every now and then. I think the evidence is on my side in this. We can go through hundreds of movies with built in Christian themes that were written and made by non-Christians.

Finally, I think I have avoided using pop culture as merely an instrument. We do not use culture as an instrument towards a non-trivial end. Rather, culture exists, and by virtue of what it is can help point people towards that non-trivial end. It is not something that we use as a hammer. Instead, we simply help people recognize what they are actually longing for and how the Christian worldview can more satisfactorily satisfy those longings than whatever else they might be chasing.

I don’t have a beautiful name for this alternative, but I think it is clear that there are not only three possible options relating to Christian engagement with popular culture and why we do it. Some of us do it because first of all we enjoy recognizing the good, true and beautiful ourselves (with discernment obviously as stated before). Secondly, we do it so that we are able to talk to those around us about what they have seen and recognize why they feel the way they do. It is not like there is some kind of spiritual alchemy where we want to automatically turn popular culture into some type of allegory for the Gospel. Instead, we simply recognize that God can use the good, true and beautiful in culture as a bridge to bring people closer to Him. We are just pointing people toward that bridge.