Against Advice

The United States–and in particular its white Protestant-Work-Ethic subculture–is a fix-it culture. We like shows about remodeling houses and makeovers. We DIY and we read advice books and advice columns. We are helpers, which is great, and we are resourceful. But we also often give advice when love or support is more warranted, and we often totally confuse a hug with a hammer. This is kind of like seeing someone crying and handing them a roll of duct tape; it’s a nice thing to offer but completely useless for the situation at hand.

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Sonya’s hand grasping a big ol’ roll of silver duct tape through the center

Advice is awesome in situations where a person has said, “I am really looking for advice.” Or when two people are confronting the exact same practical problem, as in “I dropped my phone in my coffee!” + “Put it in a container of rice!” = “Thank you so much!”

Advice feels good when you give it, because it feels like you are doing something, and that feels better to the giver that being powerless. We don’t like not being able to do something. Also, once we do something, we feel better and we feel like we can then walk away. Advice is definite, decisive, and clear.

However, unsolicited advice can feel bad to the receiver, because what it does is it often makes the receiver feel less cared for instead of more cared for. There’s a hint of unintended judgment that comes with advice, as if the advisee is saying, “This problem is so simple and here’s something basic that you probably should have thought of. Bye!” (Wait, I had never even HEARD of this thing you are calling yoga. Tell me more!! Hahahaha. Or my favorite, Remember to breathe. Oh crap I did forget and now I am dead.) The advisee doesn’t mean for it to come off this way, but that’s how it often feels. It also can be lonely to receive reams of advise, because everyone has dropped their duct tape at your feet and run but no one is around to really see or hear the complexity of what you’re going through.

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Cover of black book with gold starburst design in middle, lines radiating out of center circle. Title is The Culture Code on top, center of the circle says “The Secrets of Highly Successful Groups” and on the bottom Daniel Coyle, New York Times Bestselling Author of the Talent Code

Finally, it can be super-frustrating to receive the same basic advice over and over when you have years of experience in advanced problem-solving on the topic. Like, duh. Let me tell you the Ph.D. version of my Facebook post.

I am reminded of all of this because I am reading a really excellent book about healthy group cultures called The Culture Code by Daniel Coyle in which he talks about how good organizations and teams create meaningful bonds. It’s counter-intuitive in every way–honestly, if you think you know what’s in this book, you’re wrong–and he shows through research and example just how important seeing and listening and acknowledging and making space are to healthy communities. “Leadership” is not what we think it is.

Anyway, you might be a fixer or advice giver. I am. I like to get shit done, and I as a product of my culture have often found a piece of basic advice rolling off my lips in response to a horrible life dilemma from a friend. Sometimes I’ve been present enough to stop that in mid-sentence and repair. So with that in mind, I offer a few things you can do to connect with friends with problems that aren’t about giving unwanted advice.

Instead of Advice, Try…

  1. A heart emoji and “I’m thinking of you.”
  2. Mirroring back an element of what a friend has shared that has struck you in particular, such as “You said that you’re not sleeping much. That must be really hard.” Just reflecting on what a person has said is a huge and powerful gift.
  3. Asking a question about what the experience is like. This might seem invasive but the friend will tell you if it is, and it’s being curious about the actual experience so it might often be really welcomed!
  4. Asking the friend how you can support them or asking “What one thing is most hard right now?”
  5. Sharing your own experience if something like this happened to you and what you found to be most challenging
  6. Offering a specific thing you can think of to do to help the person and asking if that would actually be helpful or no
  7. Telling the friend that you have another friend who went through something similar and that you can put them in touch if that is something that might be appropriate
  8. Telling the friend they are doing amazing at juggling everything that is going on.
  9. Noticing something in the friend’s life that you have admired to remind the friend of good things about themselves (but not in a “why aren’t you grateful for all that you have?” kind of way)
  10. Checking in on the friend a day later to see if the person wants to vent or talk

What other things can we do other than advising? Any other ideas?

What does it mean when CHIP funding stops?

One of many, many egregious things going on right now is the Congressional refusal to fund the CHIP program, which provides healthcare for low-income kids. As I have written about here and elsewhere, I have a personal connection to this issue, as my son and I were on the CHIP-funded state healthcare program in Ohio after he was born. Why? I was in school full-time–working as a graduate teaching assistant and also doing freelance writing and freelance proofreading as well as adjuncting at a second college–and I couldn’t find private health insurance that would cover us. I looked into buying coverage through my employer, Ohio State University, and found that that would have cost MORE than my entire paycheck. Private solutions were completely unaffordable, as in I couldn’t find one in the “healthcare market” that would cover us both, given the fact that I am female and have a uterus, and health insurance is more expensive for women. In this and so many other instances, the market analogy does not explain healthcare. Healthcare is not a market; there was no free-market product I could buy. Market failure.

CoverMeTinyMy kid got great healthcare, along with a few hiccups along the way that I write about in Cover Me: A Health Insurance Memoir. But I’m white, have two graduate degrees, and knew that I was going to escape poverty eventually.

Many are not so privileged. For many, CHIP is a necessity given the failure of the healthcare “market.” There is no affordable way to keep children healthy that is on offer. None. And so… kids without CHIP will suffer these consequences, beginning as soon as CHIP funding fails, which has already begun.

  1. Real human children will go without basic immunizations on their regular schedules. Without these immunizations, we put all children and communities at risk, given the way immunization works to address the health of the “herd.”
  2. A child without healthcare for a simple cold will have a cold turn into an ear infection or pneumonia that is not addressed until he or she visits an emergency room, at which point the child has a much higher chance of death or hearing damage or a thousand other complications. The parents of the child then also have an ER bill (very expensive) to deal with.
  3. Without regular healthcare, the child will not have a regular doctor to help parents make decisions about questions that arise in a child’s health: is that bump or rash normal? Chronic and serious issues will go untreated.
  4. Untreated illnesses lead to massive stress on an entire family, including more days missed of work, parental stress, pain for the child, threat of a parent losing a job.
  5. Untreated illnesses lead to stress on young immune systems, and there are so many advanced autoimmune and chronic, serious conditions that result from stress on immune systems already taxed by poverty and the environmental effects of living in a poor neighborhood which is likely to be more polluted due to environmental racism.
  6. Lack of insurance and regular doctors’ visits can lead to permanent life effects and disability when specialists are not able to offer timely diagnosis and intervention for learning disabilities and hearing issues among many other challenges.
  7. A child who suffers this kind of medical neglect–which is beyond the control of his or her parents–will have experienced more pain and therefore will have an increased potential of a revved up neural system with more chance of encountering chronic pain in the future.

I could go on, and I completely imagine that if you’ve reached this tiny blog, you already agree with me. But I had to say these things… stopping CHIP funding is not temporary. Every minute this program goes without funding affects real children, and the Republican-induced medical neglect will create a generational impact that these children’s bodies will carry far into the future.

Health “Benefits” and Violence

A long looonnng long time ago in a galaxy far far faaaar away, I was elected to serve on a committee at a workplace that discussed employee compensation and benefits. I deferred for a year because I didn’t think my health could withstand it. Then I said to myself, Ok, everyone should put in their time, so I went onto the committee. I put in two years of my time, and I thought I would learn something. I also thought I could contribute something, because I have written about health benefits and had enough trouble with them that I understand some of the pulleys and levers.

Screen Shot 2016-05-24 at 11.06.31 AMI knew it would be grueling. What I learned, however, was more than details. I learned that the conversations about health insurance in this country are not meant to be logical. They are often really about blatant control and submerged violence.

The first year was survivable. We negotiated some benefits changes that were difficult, but they were not draconian or arbitrary. We were reasonable, and we practiced the dance that people living in the United States are forced to do: “Yes, because of (Cruelty that Will Not Be Named), we will agree to cut into our own bottom lines for the sake of the well-being of those profiting from healthcare.”

In the second year, we tried to figure out reasonable responses to these escalating costs and to contain them; we asked for a little padding for the handcuffs. Those reasonable solutions were met with a stone wall which revealed a little bit too much of the underlying agenda: this was not even about accumulating money for the very rich and for the stockholders of the for-profit healthcare system. No, this was about power over bodies.

We bent over backwards and forwards (with all the implications intended) to propose ways these cuts might be made a little less painfully, and that was met with a rigid refusal. I do believe that some of the people who were sitting in the room did not necessarily think their orders were reasonable, but their own salaries and benefits and therefore the well-being of their very bodies depending on carrying out those orders.

I understand that healthcare costs are escalating. I am not an idiot, although the subtext of our outrage over cuts was always that shame: You are children. You do not understand the real world. They laughed at us, that bureaucratic head-shaking laugh.

There was a pretend-reasonableness to these discussions, but beneath the charts and the agendas was a violence, and that violence says: the people who are in charge—some of whom you might never actually see face to face, and some of whom loathe you because you oppose their agendas—can do what they want with your bodies.

The idea of employer-sponsored healthcare is the worst thing. The idea that employers who buy our labor and by and large set the terms for much of our waking lives also get control over how we might get access to treatment and pain relief and options for our bodies to function is tyranny.

Every week after the meetings I came away in a fog of depression and exhaustion that took the whole day to lift, and the substance of that depression was the non-reality of this imperative: You want too much. You are crazy as a group to want safety or even to want to do better than you did five years ago because 1) you are educators, and education is not a priority in this country and 2) health insurance has the nation in such an unquestionable stranglehold that it threatens every single person’s economic security except the rich and those with two stable middle-class incomes.

Our individual workplaces are not the source of healthcare madness in this country, of course. The CFOs and CEOs are enacting the cruelty of a privatized for-profit system in which insurance is necessary in order to protect a person’s body from the violence of denial of healthcare, and that violence threatens from every turn.

At one point during this extended adventure, the committee met with the board of trustees, and I contributed and played the game and was reasonable and made points. I took from that meeting a few notes and a fancy metal pen. Afterward I was in bed on and off for five days, emotionally exhausted, sore from chronic conditions that make the issue of healthcare a very serious issue, an issue I cannot turn away from for a second. You say “healthcare” and it is not abstract for me. I need it to function on a daily basis.

I am on a specific healthcare hair-trigger: in not having access to healthcare and having healthcare debt at various points in my life, I go into a rage at the inhumanity of having one’s physical and mental health used as a pawn of control. It makes my heart ache. I am also on a hair trigger regarding the general issue of men making decisions about my body, shaking their heads in condescension, laughing at me, implying that I am a foolish child, and telling me that what I see and know is not real. And then making me say how “lucky” I am to be in this situation when so many others have it worse, forcing me to acknowledge that this is the world we live in, a world where cruelty and denial of care sets the terms for how we live in our bodies.

We all live with this as if there were no other options. There are other options. When you shake your head at me and say, “Oh little girl, you don’t understand the market…” I say, “It’s amazing how many levels of condescension and control are going on here to get into my head and make me feel worthless so I don’t have the energy to fight you.”

And then I quote the Pope, who said on May 7, 2016: “Health is not a consumer good but a universal right, so access to health services cannot be a privilege.” This is the true thing, no matter what layers of shame are wrapped around our bodies. We are mortal and breakable, and that should not be a sin or a shame. That is the glorious fragile human condition.

Check out more of the Pope’s stuff here: http://thinkprogress.org/health/2016/05/19/3779838/pope-francis-health-care-leeches/

 

 

My pills

I get it. We have all just lost a guiding artistic light, and it might have something to do with a suspected overdose. Now we want to fix the problem, so “ban opioids” are starting to appear in my social media feeds. We can’t bring anyone back, but we can figure out the root of this problem.

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My pills: a mix of prescriptions and supplements in a basket. None of these happen to be opioids,

I am in favor of what might help addicts, but in this case, fixing a problem is not as easy as banning something. There is a deeper problem, and opioid abuse is just one symptom. If you make opioids harder to obtain, you stigmatize my community, those with invisible illnesses and chronic pain. You make treatment and help even harder for us to obtain. We are so often seen as drug-seeking addicts.

People with chronic pain and severe health conditions often need opioids. The harmful myth is that everyone who pops painkillers is an addict. But many studies say that chronic pain patients are not the majority of those who become addicted; the pills often don’t give a “buzz” when you’re just trying to fight to function. Instead, they usually just help with sleep. In fact, there’s a huge difference between needing a pill to function and being addicted.

Dr. Howard Fields, professor of neurology at University of California, San Francisco, is quoted on “Here and Now” WBUR’s blog:

The greater problem is that there’s a huge reluctance in general of physicians to prescribe adequate medication for people who really are in pain and have a very low risk of becoming addicted. That’s the big problem. I think if you read the actual epidemiological data and the data from insurance companies and health organizations, it suggests that the vast majority of people are undertreated for their pain and I think that that’s in part due to the scare of overdosing and having the drugs diverted and making somebody who never was an addict and never had a drug abuse problem into an addict. My position on that is that’s very rare. I know people are being undertreated for pain. Opioids are the most effective pain relievers we now have. You want to use them optimally, but you want to use them when they’re necessary.

 

There are very few comprehensive pain clinics, especially for chronic pain.

Doctors may prescribe opioids too often for minor injuries that get in the wrong hands (this is called “diversion”), but the problem is not chronic pain patients, who manage their meds and know where they are. The problem is the 15-minute doctor visit, which is driven by a healthcare system more concerned with the bottom line that our health. “You hurt your shoulder? Here’s a scrip, I gotta go.” I believe there would be fewer unnecessary opioid prescriptions if we had a comprehensive healthcare system that was open to everyone.

If we had comprehensive healthcare reform, someone who did develop an addiction to opioids, they could get help—but right now rehab is also out of reach for many people without insurance. (It’s true, not genius singers. They could afford to go. Addiction is so hard and hearbreaking and stigmatized for so many reasons. And it often starts because people are in chronic pain and not medicated effectively, so they turn to a cocktail of their own creation.)

When someone dies of a drug overdose, don’t say that opioids are the problem, because in a country with a broken healthcare system, those drugs are one of the few tools for survival that people in chronic pain have to get through the day. Opioid abuse is a symptom of a deeper problem, and that is our healthcare system.

Quell for Pain Management

I learned about the Quell device earlier this week through social media. It isn’t cheap at $250 but after I dove deeply into the online user comments, I decided I had to buy it. Why? Well, as you may have reason to know or not, when you’re in pain, you want to fix that pain.

First, what is this thing?

It’s a little box that’s lighter than an iPhone but scored in the middle so it flexes. It fits into a pocket and gets snapped to sticky electrodes that go on your leg below the knee. Then the pocket-brace gets Velcro’d around your leg and off you go. It’s a version of a TENS unit but it is wearable and somehow sciencey-special. JUST GIVE IT TO ME!

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The Quell: Picture of a black brace strapped to a leg below the knee.

I can’t explain the science; if  you scroll down here you’ll see a helpful video. Having watched way too many YouTube videos of professors explaining the latest research in pain, this all seemed reasonable. But I figured the comments would tell all so I started reading blogs and so on, as well as user comments on Amazon, where people generally spare no rage. And most of the comments were very positive.  So I thought, ok, it is a quarter of a thousand dollars, but on the other hand, pain.

I ordered it and it arrived two days ago. I have been wearing it ever since then. It comes with an app and connects via Bluetooth, so it tells you how much time you have left in a therapy session and how long to wait until the next one. You can wear it also while you sleep, and I have been.

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Screen of Quell app on iPhone showing a clock face with time left in therapy session and also that I really need to charge my phone.

What does it feel like?

It kind of almost feels like the leg that you’re wearing it on is a little asleep, which sounds annoying–but only if you aren’t in constant pain. You can adjust the strength of the therapy up and down so you don’t feel it as much. I’ve worn it while walking around running errands, walking the dog, walking on the treadmill, and for the most part I have forgotten it was there. The dog even got out this morning and I had to do a short sprint to catch her (ouch) and it didn’t come loose or impede my movements in any way.

Does it work?

This is why I am writing this blog, because I think it does help with pain. It might not help everyone, but here’s what it has felt like:

  1. I notice a distinct difference in my pain levels when the therapy is “on” vs. when it is off. Today there were a few moments that my pain was at a 7 or 8 with it off (on a scale of 1-10) and then when I put the thing on again, the pain was down to a 4.5 or so. If you are in pain every day, you know that is significant and huge.
  2. There’s an additional quality that’s hard to define but that I’ll call the pocket of my mind behind the pain. If you have had periods in your life without pain, you might remember a different version of your brain that was a little quicker, fresher, more alert. Pain is cognitively draining. I swear: I have felt more mentally alert, and I think it has to do with the drain of pain being eased enough that might concentration is slightly better. (Or all this is because I’m on spring break from teaching this week. If that’s the case, I’ll update with that sad news.)
  3. I have autoimmune disease, so the other stuff that comes with that condition (fatigue, ups and downs due to weather, stiffness, and joint trouble) aren’t addressed by the device.

Any downsides?

  1. One thing about this device is that the goopy electrode patches seem like they’re going to attract dirt and get gross (like super gross) quickly. One electrode is supposed to last for 2 weeks, and I can already see that I’m going to be looking forward to that day. I don’t know if I’ll be able to make it that long. A 3-month supply of electrodes is $90, so this could add up. But then as I was sitting there this morning getting my leg zapped, I thought about how many times in the past 2 days already I would have paid $20 to feel slightly better, and I thought: 3. So that’s $60 already. (If you need rationalizations, I make them well).
  2. You have to switch legs or give your skin a breather because users have said the goop irritates the skin under the electrodes. It’s recommended that you put lotion where the patches go. Fine by me.
  3. The therapy is set to go an hour on, an hour off. So the off hour isn’t that good, because the pain comes back. But some people report that the effects of pain relief last up to an hour after a therapy session, and the effect may increase over time. So I’ll see how that goes. I have some weird thing against using it all the time. I don’t know why. Blame Catholicism or Puritanism, I don’t know.
  4. Fashion backward? Maybe, but I do not care the slightest bit.
  5. Another thing: and this might be just me, but today during a rough patch when the thing was off, I was wondering if maybe there was a rebound effect. Could I become dependent on this effect? Was my pain worse during the between-times? I don’t know.

To sum up: It’s not a drug, it won’t wreck your guts, it’s FDA-approved, so there you go. My two cents and two thumbs up.

 

 

How Should You Treat a Co-Worker with a Chronic Health Issue?

You might see someone limping with a cane down the halls, and then a few days later they’re fine. Or you know a co-worker has lupus and you are not sure what that means for their role in your project. Or you are just empathetic but unsure. I am not an authority on invisible disabilities, but I do have a few–two autoimmune conditions including Rheumatoid Disease, which affects my movement and produces pain–so I thought I’d take a stab at some imaginary questions. I’m not an HR professional. This might be incorrect! It’s just my thoughts. Feel free to leave other questions in the comments.

Is a person with these conditions (which I’m going to describe as invisible disabilities) less able to work?

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My cane and my heating pad at my desk. Showing up like a rock star.

Unless they are a lumberjack—and maybe even if they are a lumberjack—each situation is unique. Jobs are a fit or not a fit for a wide range of reasons, and determining that fit is the right of the employee, the supervisor, and HR—not you. Instead, check your own thinking: are you assuming that when you see signs of physical impairment, there is cognitive or motivational difficulty? There might be those, there might be others–but it’s probably not something you are qualified to evaluate. I can ask that difficult question because I have a sometimes-visible disability and yet I too berate myself for being less capable. I’m not less capable. In fact, in some ways I’m more capable, for reasons I’ll get into below.

 

The truth is that a person with a chronic condition who is employed is actually a wonder of neuroplasticity and adaptation. People can adapt over time to conditions that would be unbearable if they emerged suddenly. They are forced to grow their lives around amazing challenges and yet make life work, to be functional.

If I have someone with a chronic condition or an invisible illness on my team, is that going to affect my due dates? What if they have to go into the hospital?

Not everyone who has one of these conditions needs time off of work, but every single person alive faces the unknown of illness and hospitalization. Cross that bridge when you come to it, but you do not need to expect any additional degree of unreliability from someone with a chronic condition. That’s a misconception about the nature of chronic illnesses. If there’s a serious issue, the person will make you aware of it.

In what ways is a person with an invisible disability or chronic illness a wonderful employee?

Hahaha—that’s a great question. (I might have planted that one). A person with these conditions can be a great liaison to other employees and to potential customers with these challenges. He or she can help you adapt your business, your website, your services, to the needs of this huge population. A person with these conditions is often a complete wonder of efficiency, because he or she has had to make difficult choices with regard to precious energy and time that can’t be squandered. People with these conditions get as much or more done because they know their own energy levels and work abilities intimately. They are mental and emotional athletes. They often have a high degree of empathy, and in some cases their ability to design work-arounds in their own lives has resulted in enhanced creativity for out-of-the-box solutions.

Should I give the person extra leeway with deadlines, etc.?

That’s not necessary unless they ask for it—like any other employee that needs a flexed deadline. And we all do, for all the shit life throws at us.

Some days a person has visible aids, like a cane, a cushion, limb or hand supports. Does that mean the person is feeling his or her disability most acutely and that it is gone on other days?

Actually, no—not at all. One of the difficulties of an invisible condition is that the discomfort is usually chronic. A particular aid might be called for on a particular day, but the hardware just means that a specific part is having difficulty, and does not even act as a barometer for when the worst days are.

When I see a person with one of these aids, does it help to express sympathy or to ask how the person is doing?

This is a very individual thing, but in my case, the answer is no. I want to try to normalize my condition, to have it be a part of me but not the most obvious part. I want my coworkers to understand that some days I have my hardware and some days I don’t—but that every day is hard. Because every day is hard in different ways, expressing sympathy only when the hardware appears makes me feel a little like the person doesn’t get my condition (it’s fine if they don’t—I barely get it). The worst part, however, is to associate my cane with a sad expression and the need for sympathy. I love my cane. I love it. It helps me walk, it announces my disease as visible, and it does a lot of other things for me. The worst days are the days you can’t see. So when you see me with a cane, just say hi.

Should I suggest various things that have worked for my niece’s boyfriend or that I have seen on Facebook, such as supplements, yoga, etc.?

No. These people are barraged with well-intentioned advice. Think about what it must be like to have a life-long condition that other people assume is easy to fix when in fact doctors have pronounced it incurable. What you are saying to the person is that they have overlooked something obvious and so therefore that they might be a little dumb. You don’t mean it to sound that way, and you’re just trying to be helpful, but it’s a little insulting, and it doesn’t help to build connection.

Should I use this person’s condition against them in power struggles and office conflicts?

Hahah! You’re FIRED! No, seriously: This is probably too obvious to say, but it needs to be said: if you in any way imply that the person is less able to do their job, is weak, is less qualified, or is a burden, you are not only wrong but you are also doing something that is immoral, unethical, and illegal. You are bullying based on physical ability, which is reprehensible.

xoxox

Sonya

Investors, I Have a Serious Awesome Idea

I have a completely serious proposal that could do good for people and make someone some money (….and that might be the most American thing I’ve ever written). Here’s my vision: facilities modeled on health clubs that are specifically targeted to people (including but not limited to the elderly) with chronic pain, mobility, and mental health issues.

There are three health clubs in my not-affluent town all competing for the market of the physically fit and exercise oriented, while another demographic is offered no services.

These facilities would be membership-based and would be attractive for people who need to get out of the house and relax, but whose issues make the traditional clanky, loud, screaming décor, industrial design of a gym completely awful. Modeled partially on the idea of the public baths and saunas of Europe and the Middle East, these facilities would be soothing and focused on the needs of people with limited mobility. The goal would be stress relief through completely simple physical support, including nice low-light rooms with aromatherapy, heated lounges, nice towels, and views onto natural environments. A range of options would allow people with a range of challenges to have the social interaction so necessary for health in an environment built for them. Medical waivers would protect against liability, and additional revenue could be generated by offering newsletters in which traditional and alternative healthcare providers could advertise their services to this targeted market. (See? I can totally talk the talk).

The health outcomes of greater socializing, stress relief, and even connection with healthcare services would make these facilities attractive to health insurance companies, who might offer their patients premiums and discounts if they were to join and use such a facility.

Features:

  • Low-key yoga and balance classes, tai chi, etc.
  • Saunas, hot tubs, steam rooms for heat therapy
  • Treadmills
  • Mats for stretching
  • Benches for just sitting around
  • Quiet
  • Childcare
  • Soothing music and rooms with no music
  • Rooms for meditation or just chilling out

About me: I’m a good writer who has been marinating in corporate language and mindsets for 16 years (i.e. in higher education). So I know the lingo about synergy and stakeholders. I could sell you my idea or consult. I’m totally serious. I have tons of ideas and I’m even sometimes funny. Admit it: this is brilliant. One of these should be in every town including mine.