Afraid that I may lose access to treatment

The psychiatrist who oversees my care, prescribes my medications, and referred me for ketamine treatment, is closing her practice. Finding a replacement, however, is proving to be extremely difficult.

Most clinics and doctors that I can get to from the rural area where I live have a waiting list of months to years, or have stopped taking new patients all together. Worse, even when a clinic or a doctor in private practice is willing to schedule an initial appointment, they refuse to work with me once they find out that I am going for monthly ketamine infusions. So far:

a) Many just said they won’t provide me services  — without offering me any explanations, alternatives, or resources in case my treatment needs were urgent. Both irresponsible and cruel, individuals responding this way to someone who is trying to access treatment by a psychiatrist should not be working in the mental health field.

b) Others have apologetically said that they don’t feel that they have enough knowledge/experience with ketamine treatment to effectively work with me. It really is time that these psychiatrists start learning about the treatment and rethinking whether refusal to work with ketamine patients is really in the best interest of these patients as they seem to assume. After all, what level of expertise with ketamine are they thinking they need to have? These doctors probably already have plenty of patients receiving chemotherapy and other specialized medical treatments — and though they aren’t experts in the specifics of those treatments, they monitor their patient’s mental status and consult with his/her other doctors as necessary to coordinate care. Why should ketamine patients be any different? Of course it would be advantageous if all my healthcare providers could have advanced training and experience with all my disorders and treatments, but I’m in no position to hold out for unrealistic ideals. Isn’t a psychiatrist who lacks expertise with ketamine still better for me than being left without a psychiatrist?!! Because seriously, living where I do, those may be my only realistic options.

c) One psychiatrist that I spoke with said that by receiving monthly ketamine treatments from a specialist while having my psychiatric care and medications overseen by someone else I am inappropriately splitting my treatment and seeking drugs from too many doctors at once. This doctor really needs some basic education about ketamine treatment. First, it is entirely standard for ketamine infusions to be provided by a specialist who is not the patient’s primary psychiatrist. Few psychiatrists administer ECT themselves either – they refer their patients to a team of specialists to provide the electric shocks and anesthetic drugs, but they don’t accuse their ECT patients of inappropriately splitting their treatment by pursuing this arrangement. Second, ketamine treatments for depression are not illegal, they are simply off-label. If a psychiatrist is comfortable prescribing other treatments off-label, they really ought to ask themselves why they are so unusually judgmental about this one, and keep that personal bias in check when talking to patients.

Finally, I wish all of these individuals could understand that I have provided informed consent to receive this off-label treatment. If any psychiatrist is afraid to work with me because they think I might sue them for letting me exercise my right to receive a potentially life-saving experimental treatment, I’d say: Let me sign a waiver. I’m not asking you to give me ketamine infusions, just to allow me to receive them under my own volition. The risks are mine, and the decision to take those risks should be mine. For me and other patients like me, the risks of not having this effective treatment are worse.

I need to have a psychiatrist. And unfortunately, both my difficulty finding one and my fears that this will soon prevent me from continuing ketamine treatment are really starting to take a toll on me.

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Update: I finally found a psychiatrist willing to see me — several hours away from where I live and with a limited schedule that will require me to miss work for appointments. But I’m very relieved to have found one!

Why you shouldn’t distinguish so-called “high functioning mental disorders” from “mental disorders”

I’m seeing a lot of stuff from mental health awareness groups about “High functioning depression,” “High functioning anxiety,” “High functioning ADHD” and you name it. Obviously, just because a person’s work/school performance or social media profile looks alright doesn’t mean they can’t also have a psychiatric diagnosis. But there are far better ways to get this idea across to to the public than by dividing people using made-up labels like “high functioning” that ultimately only worsen confusion and stigma.

There are no separate diagnoses specifying high-functioning vs. low-functioning depression, just like there aren’t separate types of depression for right- vs. left-handed or short vs. tall people. There are just infinitely many different variations of major depressive disorder for the infinitely many people who have it.  There will never be a diagnostic label that captures how your specific combination of symptoms and identity and life all intersect — nor should there be, because that is not what these labels are for.

But adding the words “high-functioning” to a person’s diagnosis is not just unnecessary, it is harmful, because it increases stigma for everyone else. For example, by saying you have “high functioning depression” you’re making sure to specify that you’re not a loser like a stereotypical depressed person, thereby removing any positive effect (on stigma) that publicly proclaiming your diagnosis might have had. It is essentially an attempt to boost your own social appeal by distinguishing yourself from others who are less fortunate. It also functions to buy into and support negative stereotypes. (I wouldn’t refer to myself as having “high functioning depression” any sooner than I’d call myself a “female scientist.”)

I’m afraid that this seems to be part of a trend among young stigma fighters to embrace diagnostic labels while still being unable to accept that mental illness necessarily entails struggling/suffering, and while still holding very negative attitudes towards people with mental illness who don’t meet their standards for being sufficiently successful (attractive, happy-looking, and so on).  But it doesn’t do much good to de-stigmatize diagnostic labels while stigmatizing the real experience of people who live with those diagnoses, many of whom do not have picture-perfect lives.

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For more on this topic, see this recent writing by Sam Dylan Finch and M. Slade.

The punishing truth about campus mental health policies

Recently I have seen several articles critical of Northern Michigan University, where last year students received emails warning them that talking about their struggles with mental illness could result in removal from the college  (see link below). I’ve been following this story with quite a bit of interest, because as a college student I was profoundly affected by campus mental health policies, and as a faculty member I’ve served on the committee charged with creating such policies.

What I think is missing from discussion of this news story is recognition that students who want to stay in school while suffering from mental illness are ostensibly punished for suicidal ideation, nonsuicidal self-injury, and other aspects of their disorders (such as eating disorder symptoms) in colleges everywhere. In fact, the only thing really striking about the NMU case is that the school’s punitive policies had been expressed to the students directly, transparently, and in writing, rather than in the usual stealth ways.

At the college where I work, for example, students aren’t explicitly prohibited from expressing self-destructive feelings, but there is a policy that justifies a mandated (involuntary) leave of absence for students with mental illness if they 1) place their own health and safety at risk, or 2) cause others ‘substantial distress’ above a ‘normal, everyday’ level, or 3) are returning from a psychiatric hospitalization. While #1 is well-intended, it isn’t objectively defined, and students find it unfair that some forms of self-destructive behavior (such as nonsuicidal self-injury or eating disorder) result in much more harsh consequences than forms of self-destructive behavior with less mental illness stigma (such as consuming dangerous amounts of alcohol). What #2 means to a student with mental illness is that if your roommate worries enough about you, you might have to leave school, whether or not you want to. And #3 means that if you seek help at an emergency room or elsewhere in order to get through a tough time, you might not be welcome back on campus when you feel the danger has passed.

The language of our policy really troubles me (and I’m sorry that my need for anonymity makes me unable to directly quote it for you). For example, I wonder whose standards get to determine what constitutes a ‘normal, everyday’ level of distress, since it certainly isn’t going to be the level of distress that students suffering from mental illness live with every day. Is the college really requiring students who are disadvantaged by extraordinarily difficult lives to put on a pretty face about it for the sake of their luckier peers?

But perhaps what is most disturbing is how easily a school that considers itself modern and inclusive can get away with legitimatizing bias against people with mental illness. At this college, students with mental illness who have violated no conduct codes nor fallen out of good academic standing can nevertheless be banished from the college just because others find their presence upsetting. The campus community would strongly object to a policy like this if it were directed against students on the basis of their gender, sexual orientation, race, ethnicity, physical disability, etc. It would even oppose applying this policy to students who persistently cause others significant distress by expressing abhorrent ideas. By adopting this policy specifically for students with mental illness, the college is telling these students that they cannot count on same basic rights as anyone else. And though the broader community doesn’t seem to care or notice, the targeted students really do take this message to heart.

I struggled with mental illness for my entire time in college. And one tearful night mid-semester in my third year, when my residence hall leader asked if I had any suicidal thoughts, I answered honestly. As a result I was faced with eviction, which unsurprisingly did wonders for my mental state, and I “voluntarily” withdrew from school because I had few other options. I still have a lot of questions about what happened back then. Did my undergraduate institution genuinely act in the interest of its students when it required me to decide between denying my suicidal thoughts or being forced to leave? When I admitted feeling suicidal that night, was I asking to be removed from college and placed in the mental health system for my own good? Or did I just make a stupid mistake that dramatically changed years of my life in a largely unwelcome way? Decades later I’m still not sure.

There are sometimes very good reasons to require students to take a leave, to protect those who aren’t able to freely choose protection. Indeed, my own sad story might have been even worse if I hadn’t been forced to withdraw when I did (we will never really know). Regardless of the intent of mandated mental health leave policies, though, the students faced with them quite reasonably feel disenfranchised; and the fact that these students realistically fear being punished if the college knew the extent of their suffering prevents them from getting help. I don’t know what the answer to this problem is, but the problem is far more complicated and widespread than either the administrators or the students closest to these policies are going to be willing to admit.

Reference: http://nymag.com/scienceofus/2016/09/a-school-is-threatening-to-punish-its-suicidal-students.html?

Going for depression treatment, not for tripping balls

I’m traveling nearly all day today to visit my doctor for a ketamine infusion, as I’ve been doing approximately every 3-5 weeks. I don’t look forward to doing this, so I tend to procrastinate on making the appointment and feel a bit anxious the night before, just as I would with an appointment for dental work or a mammogram. But I continue doing it because it has helped keep my feet on the ground (rather than in a depression hole) for most of a year, something no other previous treatments were able to accomplish. When weighed against the risk of falling back in that hole, the risks associated with this peculiar and poorly understood treatment are a reasonable trade-off in my case. If I had a less serious depression that could be reasonably managed any other way, the cost-benefit ratio would be much different and I wouldn’t be doing this.

I certainly don’t do this because I want to. The treatment sessions were interesting at first because they feel so different from anything I’ve experienced in waking life and I’m a generally curious person, but I have no desire to keep repeating them. If there were a way to get the benefits of this treatment without the hour of dissociation I would absolutely choose that. It would be so awesome if a ketamine metabolite (or something similar) could be developed as an antidepressant with the same benefits and lack of daily-life side effects as monthly IV ketamine – but with no trippy infusion, no needles, fewer risks, no traveling, lower expense, and no drug-abuse stigma. But at this point in time, empirically supported alternatives like this are not available.

Now, just in case you are one of those people who is going to try to tell me that taking much smaller doses of oral or intranasal ketamine at home on a frequent basis is a good alternative to monthly IV ketamine in a doctor’s office, I’m not going to consider that until I see some research evidence on the effectiveness and safety of this approach for treating seriously depressed human patients. At this point in time there is NOT EVEN ONE published study evaluating taking ketamine at home, and my disorder is too severe for me to voluntarily take a chance on a remedy without empirical support. Yes, there is one study to support doctor-administered intranasal ketamine, so I do have the option of traveling all day to dissociate on that every month in a different doctor’s office. But why? The IV treatment is working, and I have no good reason to switch. I’m certainly not going to switch just to avoid having random strangers label me as a self-destructive drug abuser.

The drug abuse stigma many people seem to attach to my depression treatment is hurtful and to the best of my knowledge, unsubstantiated. Yes, there will be irresponsible clinics administering IV ketamine more readily than they should and some patients will end up abusing it — but that risk also occurs with many other medications (including anxiolytics, stimulants, sleeping pills, and the currently available forms of oral/intranasal ketamine). If you are one of those people who is going to feel compelled to tell me that IV ketamine poses a uniquely unacceptable and stupid addiction/abuse risk, I’m going to need you to cite empirical sources to explain how this risk (a) is worse than with the many addictive medications patients can use unsupervised at home, and (b) outweighs the benefits of the treatment.

Some of the scary claims being made about the addiction risk of  IV ketamine treatment — in unmoderated discussion forums and in obnoxious comments that people have unsuccessfully tried to get posted on my blog — could easily be the basis for an updated ketamine-centered version of the 1936 movie Reefer Madness, with subplots that sound like paranoid conspiracy theories. Even when the people making these claims are doing it out of a desire to protect the public from harm, their Ketamine Madness story overlooks how harmful depression can be without effective treatment. It also overlooks how harmful it can be to stigmatize others for their health conditions and healthcare needs.

Stigmatizing IV ketamine is likely to prevent depressed and suicidal patients who have run out of other treatment options from getting potentially life-saving help. And if mental health professionals share these stigmatizing attitudes, they’ll be pushing some of their most desperate patients to take the underground route of seeking the medication from a sleazy clinic with inadequate psychiatric care and frightening consequences. For many of us with severe, treatment-resistant depression, IV ketamine may be the last or best available option we have while waiting for research to develop better solutions. We need doctors who are open to working with us and to helping us make safe, reasonable decisions about ketamine. We need the support of our families, friends, and others in our community when we pursue treatment. Stigma is probably the last thing that we need.

About time “off”

“If you were sick with cancer, you would have stopped trying to work months ago.”  That’s what the administration at my current job told me when I had hesitated to go on medical leave for depression that was seriously interfering with the quality of my work, and they were absolutely right. Taking a temporary leave was what I needed to do to get my health (and later, my career) back on track and I really regret not having done it sooner.

This wasn’t my first time taking a leave; I had required them before as a student. Yet each time it was a prolonged struggle for me to realize that a leave was the most responsible choice that a conscientious employee/student like myself could make.

Mental illness is invisible and difficult to quantify. Its severity and urgency may elude even our doctors, the people who know us well, and ourselves. Many mental illnesses involve a gradual progression that makes it difficult to recognize when you’ve become seriously sick. Moreover, with many of these illnesses, an inability to recognize its severity is a central symptom of the illness itself. Finally, we tend to use the same constructs to understand minor psychological disturbances as we do severe (even life-threatening) ones. So, the same way we have trouble getting our annoyingly well-intentioned friends to understand that healthier foods or yoga or whatever cannot solve our problems the way it solved theirs, we have trouble getting ourselves to understand when our illness has progressed beyond the reach of our usual coping strategies, strength, and determination.

Some employees and students don’t have any options to take time “off” or otherwise reduce their workload. But many more of us refuse to consider these options even when they would be possible and useful. During the long years that I often didn’t get to class, felt little interest in anything, and really couldn’t make learning a priority, being in college was a terrible waste of money and credits. Yet I didn’t take a leave until I was required to. With college being so costly, why don’t more of us postpone school when we’re not ready to get an education?

For me, living arrangements were one major obstacle. While moving back in with my parents would have been both miserable and bad for my health, living on my own would have been too dangerous, and I didn’t have any other support system. Many young adults find themselves in this situation and could really benefit from affordable shared housing options with community-established rules and someone on call for emergencies.

But beyond the problem of where to live, there is a problem with how students and their parents think about the idea of pursuing college a little later or a little more slowly. There are many mature and financially sound reasons to delay getting a college degree if we would all just stop confusing this smart plan with things like dropping out and going nowhere.

Data show that the majority of U.S. college students pursuing a bachelor’s degree full-time take longer than 4 years to finish it. So why do people persist in judging themselves and each other against the 4-year ideal? This is just one of many ways in which unrealistic marketing for the “college experience” is completely out of control. I think it makes a lot of sense to de-stigmatize alternative timelines for completing college and we could begin by eliminating the frequent use of designations based on class year (e.g., sophomore, second year). Wouldn’t it be refreshing if students could take a leave due to mental health problems — or other compelling circumstances —  without having to field questions about their college timeline with every person they meet until graduation?

On top of the other reasons why it is difficult for people with mental illness to realize when they should take a leave, young people typically have difficulty seeing beyond the life they currently know. Young adults with mental illness may really feel like they absolutely have to stay in college now even when doing so is putting their health in danger and accomplishing very little; it will usually fall on other adults in their lives to take the longer, more realistic view. We should all begin by addressing whatever stigma we may have internalized about taking time “off” so that we can help others feel better about making that choice when illness and/or youth is preventing them from seeing the big picture.

To my students with mental illness

This semester record numbers of my students told me that they are suffering from mental illness. Sometimes these disclosures occurred as part of broader conversations, but most often they occurred because the students wanted me to grade them differently than I otherwise would have. I’m not talking about times when students provide an official form documenting that they should receive specific accommodations for a disability. I’m also not talking about times when a specific medical or personal crisis happens to coincide with an exam or assignment. I’m talking about situations for which there is no paperwork whatsoever, in which students are very distressed about the possibility that they will receive lower grades because they have missed classes, missed deadlines, or done poor/disorganized work as a result of ongoing mental health problems. These situations weigh heavily on me, because although I find it easy to feel compassion for these students, I often cannot give them the grades they want.

A recent essay (Virzi, 2015) captures some of the difficulties that I experience when trying to address the academic challenges faced by college students with mental illness: “When you told her to work harder, she heard you say she wasn’t good enough. When you asked her to drop your class, she heard you say she was a failure.” Written in the form of a letter to the professor of a friend with life-threatening mental health problems, the essay states that the professor had treated the friend with a profound lack of understanding and support. But while there are many problems with how colleges handle mental health issues, the professor targeted for so much disdain in this piece doesn’t seem to be one of them. Unless the professor went about it in an inappropriate or cruel way that we aren’t told about, he/she seems to have taken all the correct steps to help his/her student face and handle the fact that severe illness had taken a toll on her class performance. When a student’s accumulated grades are likely to result in an unsatisfactory course grade, the student can start doing much better in the class (which will require somehow working harder at it), withdraw, or continue as-is and fail. It is unfortunate that the student interpreted these options as an insult or expression of insensitivity by the professor, because in fact they were just the possible outcomes of the difficult situation that the professor was trying to help the student navigate!

By encouraging the student to drop his/her course, the professor was responsibly suggesting that she prioritize her recovery ahead of academics while also taking the necessary step to prevent having an F on her college transcript. But the essay goes on to suggest that professor should have instead encouraged the student to stay in the course, “because it is the only thing in her life that makes her feel normal.” Perhaps this plan might make sense if the student had been auditing the class as a form of occupational therapy, or otherwise had no concern about her grade in it — but college is a lot more like a job than like therapy and chances are that a low/failing grade would not have been well-received. The author also seems to assume that offering the student extensions would have solved the entire problem, though extensions are not always an option, and an unrealistically large pile of overdue work can easily set any student up for failure. Indeed, sometimes a student has already missed or performed poorly for so much of a course that it is no longer possible to pass. The essay portrays the student’s grade as entirely in the professor’s hands, but it is not.

The essay concludes that by addressing the student’s class performance, the professor didn’t treat the student as a human being, didn’t sufficiently acknowledge her struggles, and failed to appreciate her strengths. “Professor, my best friend is smart, driven, and capable….help me celebrate her for fighting this illness.” Here the argument becomes very strange, because college courses are not really intended to celebrate anyone. It is also hard to imagine that the student would have felt celebrated in the absence of a good/passing grade, even if the professor did regularly ask her about her feelings. Importantly, the author isn’t just advocating that students with mental illness should feel more welcome on campus or have more access to mental health care, she is arguing that it is wrong for professors to evaluate these students based on standards for performance. She is saying that by doing their jobs, professors are enforcing cultural stigma and are therefore part of the problem.

I have many students who receive accommodations for learning disabilities and/or ADHD. Typically these accommodations have to do with how students take the required exams (e.g., extended time, quiet spaces) and occasionally a designated note-taker. But I have never seen a document saying that any student should receive accommodations for attending class and completing projects by deadlines that are set far in advance. Another recent essay (Ruriani, 2015) argues that it is unfair of professors not to allow this kind of flexibility to students with ongoing mental health problems. The conclusion is a plea for professors to “look at the whole person” when grading, rather than penalizing students with mental illness for their difficulties meeting the course requirements. While I agree that no one should be harshly penalized for imperfect attendance or imperfect anything, I don’t think most classes could function if the requirements weren’t actually required. I also don’t think absolute flexibility is a reasonable expectation in most aspects of adult life. Finally I have no idea how professors could fairly grade the entirety of a person.

Since colleges and courses vary a lot in their emphasis on things like attendance, students should seriously consider whether or not the requirements for a particular class are likely to be a good fit. Students also should consider the fact that being critically evaluated on course requirements is a central part of what it means to be in college. If students are likely to feel suicidal or otherwise suffer serious health consequences from receiving a disappointing grade, they should postpone their education until they are ready to handle it, because professors can’t give better grades out of concern for these things. No one can expect to do everything well, and disappointing results are especially likely when people try to do too much at once. Accepting this is part of what it takes to live and work responsibly as an adult with mental illness.

One semester while teaching I was suffering from an extraordinarily severe depressive episode in which I couldn’t sleep or make even trivial decisions. I was frequently late for class, and once even missed class because after several days of insomnia I had fallen unconscious on my way to the campus. Though I tried my absolute hardest, I sometimes couldn’t get my class materials prepared on time and it took me quite a while to grade students’ papers. In their course evaluations, my students tore me apart for my disorganization, lateness/absences, the ways in which my ability as a lecturer was impeded by discomfort being in my own skin. In other words I was judged not for who I am as a whole, or the potential for greatness that my illness had prevented me from showing; I was judged simply on the merits of what I produced at the times I was supposed to produce them. Students don’t say “Hey, professor, you didn’t sleep? How about you rest and we’ll all come back for the lecture later.” They just give you a “poor” rating as a professor — and this is how most of the world works. I try not to blame myself for these poor ratings because I did the best I could under the circumstances. And I don’t blame my students, because they evaluated my performance by the appropriate criteria. Illness can make even the best student’s or worker’s performance suffer. This isn’t because of stigma, but because of the illness itself, and it is incredibly sad.

It is human to want to channel feelings of powerless despair into indignation, and we have to feel for how much despair these authors have been through. Nevertheless, I disagree with them, and not because I need any mandated faculty training to understand mental illness! I’m not even sure that these two essays are really about mental illness. To me, these essays are largely about looking for someone to blame for the fact that we can’t always do everything well — even when we have lots of potential and are trying as hard as we can. Unfortunately, I don’t think these expressions of misplaced outrage are likely to be helpful for improving the lives of people with mental illness. Isn’t it dangerous to imply that people with mental illness are too fragile or too incapable to be held to and evaluated on performance standards? Isn’t it unreasonable to accuse professors of being stigmatizing or discriminatory if they lack warm/fuzzy therapist qualities or sometimes have to be the bearers of bad news about students’ performance? Aren’t efforts to address real issues related to mental illness stigma and discrimination potentially damaged by overly-inclusive applications of these concepts?

When you don’t get the grade you want, this doesn’t mean that you are destined for failure in life; it also doesn’t mean that your professor lacks understanding of your suffering or appreciation for your strengths.  Professors can only grade performance on specific class assignments by specific deadlines, based on requirements explained in painstaking detail on the syllabus, grading rubrics, and so on. Professors cannot and should not attempt to grade a student’s worth or potential as a whole person and I think it would be a mistake for any of us to give anyone that kind of authority. We are all more than the sum of our grades and evaluations.

References:

Mental illness *is* an invisible illness and an invisible stigmatized identity

A piece by Gabe Howard on PsychCentral claims that mental illness isn’t an invisible illness because its signs can be seen by viewers who know what to look for. Further, the piece claims that by “pretending” mental illness is invisible, we are failing to hold the public responsible for educating themselves about the signs of mental illness and for becoming more accepting of those who suffer from it.

What makes this argument frustrating is that it completely misunderstands what the term “invisible” means as applied to illnesses and stigmatized identities: It doesn’t mean that the condition/identity can’t be seen or suspected by an insightful perceiver. What it means is that the person can “pass” for someone who doesn’t have this condition/identity and therefore has the choice/burden to disclose or not. Therefore, most of the time (i.e., except when we’re wearing tin-foil hats), mental illness is an invisible illness. For those of us who deal with mental illness in our daily lives on an ongoing basis, having a mental illness is often also an invisible stigmatized identity.

The reason that invisibility matters is that the decision to disclose or not takes quite a toll on us, since both options can be very costly. By not disclosing we miss out on opportunities for support. For example, a person with a visibly broken leg will (hopefully) get a seat on the bus without having to reveal a lot to strangers who may or may not be helpful, while a person having a panic attack is usually going to have to stand the whole way. Opportunities for support at work and in personal relationships may be similarly lost when we just try to go along and explain our behavior in general terms like being “tired”. But disclosing can be fraught with problems too. I’m quite certain that I couldn’t keep my job if my psychiatric disorders were known at work; and in most social contexts, a very major part of my daily life is something that I’m not supposed to talk about. I worry a lot about who to disclose to, and after those rare moments when I just decide to speak from the heart, I often regret that I probably put people off by revealing too much about things that make them uncomfortable. Living a “double life” and constantly agonizing over disclosure/nondisclosure is what having an invisible illness or identity is all about.

Maybe eventually the general public will be so well-aware and accepting that those of us living with mental illness won’t have to think about these things any more. But in the meantime, let’s face it: This is the reality we’ve got.