multiple sclerosis caregiver

Rick on February 19th, 2010

I wrote an article recently for my Multiple Sclerosis Caregiver blog. It’s titled “Tears of Hope and Passionate Hate“. In it, I used words I find myself using more frequently as I grow older. The phrase is, “tears behind my eyes”.

I’ve used the phrase recently to describe a day to my Mom, “It’s been one of those ‘tears behind my eyes’ days.” I used it at work in a conversation with a colleague. “You’re having a ‘tears behind your eyes’ day, aren’t you?”, I asked.

As I think about it this evening, I realize I’m not talking about a bad thing. I’m not describing depression or even dysthymia. I use the phrase to describe a lot of things: a simple physiological response to persistent, low-grade grief; as a response to too much stress; and as a consequence of potential hope – not yet hope, just the potential for it. “Tears behind my eyes” isn’t negative. It’s healthy.

How often do you experience a moment when your emotions are scratched by the reality of your daily routine? The scratch isn’t enough for pain. Not enough for an emotional breakdown. But enough that you know you feel something deep. It’s a good thing. In fact, the article I wrote describes tears of hope. I want my wife healed!

The next time you find tears behind your eyes, don’t deny them. Let them give you pause. What put them there? Sadness or hope? Stress or relief? Joy? Should you turn them loose or hold them behind your eyes? You’ll answer that for yourself. What you need to remember is that they’re yours and they’re a gift to remind you of how emotionally real life can be.

Here’s what I think. We benefit when we learn to appreciate the tears behind our eyes. They’re there for good purpose.

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Rick on November 23rd, 2009

What’s on your mind in your spare time? Your favorite team? A complicated project at work? Personal finances? Yourself? Your weekend plans?

What do you think about most?

Husbands, how often do you think about your wife?

(Wives, swap genders in the question and it will work for you. For you it becomes, “Do you think about your husband?” Because I’m a guy, I’m going to use ‘wife’ as I write, but of course, I mean one’s marriage partner, male or female.)

It’s such a simple question: How often do you think about your wife?

How often? How long? What do you think about her? Do you think of her between 8 and 5? Are your thoughts related to her physical features? Conversations you’ve had? Do you have positive thoughts or destructive thoughts? (And those really are the only two kinds.) Do you think of her in your future? Do you remember special moments you’ve shared in the past? What’s in your heart? What do you feel when you think about your wife? What do you believe about her?

Here’s another way to ask it: do you think more about your favorite team than about your wife?

One of the important keys to a happy marriage is that the partners give each other focused attention. Men, focus your attention on your wife. SO, if you think more about sports, hobbies or work than you do about your wife and your life related to her, shift your attention and begin focusing on your wife.

And, men, we understand attention. Attention is what ties us to a football game (even when we know none of the players), Nascar (even when we can’t call a driver a personal friend), or fishing (even when we can’t catch a fish. I would venture that attention to detail and focused memory drives much of what goes on in the male brain. Most guys know the stats about their favorite teams and players. They know the specs of the engine in their car or truck. If you’re an IT guy, your head is full of techno-details. If you’re an insurance salesman, you’ve got the sales data down pat.

Do you recall what your wife wore yesterday? (Start remembering …)

Attention and memory are what allow you to remember that the 1980 Pontiac Trans Am was the first Firebird to be turbocharged and that it was the Indy 500 Pace Car. You can see it in your mind’s eye can’t you? White with the toooo big decal on the hood. You remember it because it caught your attention.

And at some point along the way, it’s likely that your wife caught your attention.

So here’s a quick 2-question test:

1. What teams were in the Super Bowl this year?
2. What did you wife wear yesterday? (I warned you!)

Which question is the one with implications that really matter if you want to be happily married?

Forget your favorite team. You’re not married to the athletes.

Consider your wife! That implies an active effort to pay attention and notice her. Do it often. When you’re with her and when you’re away. Focus on all of her positive aspects, the way she has blessed your life, the gifts of herself she has given to you. Cherish her, honor her, think about her.

It will enhance your marriage!

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Rick on September 5th, 2009

It’s the sure repetition of small, beneficial acts in a marriage that creates value for the relationship.

Significance is often discovered in the small things. Fortunately, because taking care of the small stuff in a marriage often requires the least effort while offering the greatest return, it makes sense to do the easy stuff.

Remember the part about “sure repetition”, though. To do a small thing once may be incredibly significant … especially if you’ve never done it before … but the true value accumulates through faithful repetition.

Here’s a simple example. My wife and I hold hands during prayers. Always. At weddings. During church services. Before meals. At building dedications. Before ballgames. At family gatherings. We started doing it before we were married and because it feels good, we’ve continued.

Some may say, “Well, Rick, I don’t want to hold my wife’s hand during prayers. That sounds like a gimmick.” If that’s the case, then maybe it would be for you. I’m merely sharing an example of how the repetition of a simple, beneficial act works for me and my wife.

What I do know is this: if we didn’t both perceive that holding hands during prayers was of great value, the practice would have ended at some time during the last twenty years. The sure repetition of this small, beneficial act has created value for both of us.

So what do I get from the simple act of holding hands during prayers?

It’s all personal. I love holding my wife’s hand because it makes me feel good. I love being connected to her. I love the reminder that we stand together before God as a couple, as parents, as friends. I love the sense of tradition and the notion that “this is our thing, we do this because we enjoy it.” I love being reminded at the beginning of each prayer that this is a way we give attention to each other. (Maybe God smiles.) And here’s an odd one: over the years I’ve enjoyed an occasional peek around a room (sorry God) during prayers and I’ve noticed how few couples hold hands anymore. I enjoy being reminded that she still loves to hold my hand. It makes what we do feel special.

If you’ve not done it in a while, you might surprise your partner by taking her hand during a prayer. To avoid a startle (if it’s been a while), maybe slip your pinky finger around hers. I can’t suggest you’ll immediately get as much from it as we do because we’ve done it for twenty years. It’s part of our marriage DNA. I merely offer it as an example.

Whether you hold hands during prayers or not, I do think every couple can find small, beneficial acts of attention that are easy to do. And I know from my own experience, these acts will accumulate value for for the couple as they do them consistently over the years. When repeated over time, it’s these small, beneficial acts in a marriage that have huge potential to add great value to a marriage.

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Rick on September 3rd, 2009

What do you think about God? Have you ever been afraid to follow a thought trail about God because you were worried about where it would go or concerned you might have a “dangerous” thought? Theological brain storms can move a lot of stale brain-air and refresh the cavities of one’s mind. But things move in strong winds.

When we think wild thoughts about God we need tent pegs to keep our tents from flying off in a storm of confusion. Or maybe like in the Old Testament, we need piles of rocks we can use as reminders when we see them. The Hebrew nation crossed the Jordan river into the promised land and God told each tribe to gather a large stone and pile them together for a place of remembering so they could tell their children. We need stones for remembering.

No one can tell you what your own Theological stones look like. You have to drive down your own tent pegs. You have to discover your own rocks; you must work it out in fear and trembling; you’ve got to find the theological foundations – those stones of remembering – which you can hang onto and which give you the courage and security to think wildly about God and ask fearful questions.

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Rick on March 20th, 2009

I “met” John Donne in high school and have been grateful since. Here’s my favorite of his Holy Sonnets. (Hint: Read it slowly about 50 times.)

Holy Sonnets: Batter my heart, three-person’d God

Batter my heart, three-person’d God, for you
As yet but knock, breathe, shine, and seek to mend;
That I may rise and stand, o’erthrow me, and bend
Your force to break, blow, burn, and make me new.
I, like an usurp’d town to another due,
Labor to admit you, but oh, to no end;
Reason, your viceroy in me, me should defend,
But is captiv’d, and proves weak or untrue.
Yet dearly I love you, and would be lov’d fain,
But am betrothed unto your enemy;
Divorce me, untie or break that knot again,
Take me to you, imprison me, for I,
Except you enthrall me, never shall be free,
Nor ever chaste, except you ravish me.

John Donne (1572-1631)

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Rick on February 10th, 2009

The mind you save may be your own. Here’s more good news for coffee drinkers from our Finnish friends:

Midlife coffee and tea drinking and the risk of late-life dementia

Midlife coffee drinking can decrease the risk of dementia/Alzheimer’s disease (AD) later in life. This conclusion is made in a Finnish Cardiovascular Risk Factors, Aging and Dementia (CAIDE) Study published in the January 2009 issue of the Journal of Alzheimer’s Disease (Volume 16:1).

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Rick on January 4th, 2009

How really wrong is wrong?

Recently, Madoff made off with as much as $50 billion in investor funds placed in his trust. It was a Ponzi scheme that began years ago.

I wonder how small the first act of deceit was. Was it $10,000 or was it a million dollars? And is it more wrong to steal from a non-profit foundation than from an offshore hedge fund?

The NYT is reporting that the former chairwoman of the Sanlu Group, one of China’s largest dairy producers, pleaded guilty to selling fake milk powder. Ms. Tian Wenhua, a former Sanlu executive said she knew in May Sanlu was selling milk contaminated with melamine. She did not report this when she learned of it. The melamine scandal wasn’t made public until August.

According to the article, Wenhua’s delay helped lead to the deaths of 6 children and 300,000 illnesses. Who added the first tablespoon of melamine? Was it an amount that small or did someone dump gallons or even a ton as their first act of wrong?

Is it more wrong to steal a $1,000,000 than $10,000? Do the zeros add up in the math of morality as they do in financial math? Is the first stolen billion dollars not quite as bad as the third or 43 billion dollars?

Is it more wrong if too much melamine kills six children instead of merely causing severe illness? Is causing illness in 3 children as bad as causing illness in 300,000?

How really wrong is wrong? Is Madoff’s wrong less if an attorney convinces a jury that he should do no time or receive a reduced sentence?

One cannot watch the news without being overwhelmed by the lack of moral integrity at work in the world of business. For too many individuals, corporations and government agencies the end (the “almighty dollar”) seems to justify any means.

Can you imagine how thoroughly frustrated ancient Diogenes would be after a random walk down Wall Street?

But before we point our fingers too firmly, how moral is Main Street? Who fully trusts any local business? Not many of us. And it’s not because we don’t want to trust. We’ve learned after we’ve been burned.

Somewhere along the path of capitalism, it became “wrong” to pass up the chance to take advantage of another, even if it required being dishonest in a transaction. Many act as if they believe it’s more wrong to be moral than to miss a deal.

How really wrong is wrong? Wrong is wrong.

Here’s what I think …

Morality begins in the heart and in the home. Then it walks out into your neighborhood and morality interacts with your friends. From heart and home, morality goes to Main Street and then, perhaps, to Wall Street. Wherever you find it, morality starts in the heart.

Moral integrity dictates that stealing $1 is as wrong as stealing $50 billion. It stipulates that sickening one child is a wrong as harming 300,000. Wrong is wrong.

It’s a difficult standard, but wrong is wrong.

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Rick on December 30th, 2008

Sooner or later: Kids + Unprotected Internet Access = Trouble

One of the smartest things you can do to protect your children from unwanted websites is to use OpenDNS. Smart because it’s good, easy and free.

You should use OpenDNS.com if you have children (or grandchildren) or teens in your home who use the Internet.

OpenDNS.com is the easiest way I’ve found to implement a content filtering system for my home network. And it’s absolutely free.

For years I’ve used OpenDNS for DNS services on my computer. Using the OpenDNS servers instead of the DNS servers offered by my ISP, I’ve not worried about phishing attacks.

Here’s the Good Stuff for Families:

By creating a user account on the OpenDNS.com website, I can choose among a set of internet filters to protect my children from accessing material I do not want them to see online. While I’m not too worried about intentional activity, it’s easy for a child to mistype a URL and wind up where you don’t want to be. Or, as I did a few years ago, I don’t want them typing the name of a potential pet and winding up at a porn site.

After creating a user account, OpenDNS provides simple instructions for configuring your home network’s router. Then OpenDNS.com walks you through setting up the filters you believe are appropriate for your family. It really is easy.

And it’s FREE!

Should you rely solely on OpenDNS? I’ve used it for years and I trust it. You may, too, but I don’t trust only OpenDNS because it’s always good to have a backup.

On the computer in our living room (and I believe no child should have unsupervised access to the Internet in a bedroom), in addition to OpenDNS on our wireless router, I have a license for CyberSitter.

Other Computer Security Recommendations

While I’m writing about computer security issues, I’ll also recommend Webroot Antivirus with AntiSpyware (it costs a little, but works well). And installing SUPERAntiSpyware with a lifetime subscription (ignore the name, it works) is a good thing, too (a free version is available). Of course, you shouldn’t have a hard drive that isn’t protected by TrueCrypt (free disk encryption). And turning loose Spybot Search & Destroy (free, but donations are accepted) on your hard drive is a smart thing to do. Even with all of this, you’ll want a solid firewall, too. I’ve used ZoneAlarm (the free and professional versions) for years.

Did you notice all the times I used “free”? It doesn’t cost a much at all to turn your computer into a secure, child-safe computer. If you haven’t done it yet for your children or grandchildren, it would make a great New Years Resolution.

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Rick on December 27th, 2008

I’ve had my eye on a 9 quart, Lodge Dutch Oven for quite a while. I bought it today with Christmas gift money from my parents. And I got a great deal on it at our local hardware store. Because it’s cast iron and will last hundreds of years, it’s possible one of my great, great, great, etc., grand children will use it, too.

Lodge Cast Iron is the oldest family-owned, family-operated cookware foundary in the United States. Located in South Pittsburg, TN, Lodge has made cast iron cookware for more than 100 years.

In a February 2, 2005 article, “Skillet Sense”, the Chicago Tribune compared six skillets ranging from the $12 Lodge Cast Iron skillet to the $160 Viking Professional 7-Ply. You can find the article on the Lodge website.

The conclusion after review in the test kitchen?

“To our surprise, higher cost didn’t automatically equal best performance. While the most expensive skillets certainly performed well, the skillet we like the best cost the least: the Lodge pre-seasoned cast-iron skillet.”

Here’s what I think …

There is little that has real value available to consumers. We’ve become consumers of disposable everythings. Even expensive things like computers, 30-inch monitors and washing machines are disposable. And we pay dearly for our disposable junk. We know when we buy our expensive toys, the manufacturers have little faith in them. Most computers, monitors and washing machines come with only a 12 month warranty.

Cast iron cookware offers real value. The skillet or dutch oven you buy today will last so long you could pass it on to your grandchildren who could pass it to their grandchildren. Try to do that with an HDTV!

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Rick on December 27th, 2008

I imagine a thousand years from now, people will look back and include the Internet as one of the most important inventions in human history. [Other important inventions include fire, the wheel (unless you live in a swamp - in that case, substitute pirogue for wheel), medicine, ethics and theology.]

Here’s what I most enjoy about the Internet: Google.com

Here’s a good example of why I enjoy Google (the noun). Google (the verb) the three words, nonprofit survival recession. As Emeril says, “Bam!” Instantly, you have access to 286,000 articles about ways nonprofit organizations can survive economic recessions.

Just a decade ago, most leaders of nonprofit organizations only had access to relatively limited information about surviving difficult economic times. If a nonprofit was old enough, the leader could look through the agency’s own history, visit with other leaders, and maybe (if times weren’t too tight already) attend a seminar on financial management in tough times. Now, we type three words and click the “Google Search” button.

Of course, with much information comes much responsibility. Not every idea is a good idea. Not every good idea is a good idea for every organization. Access to much information requires much discernment. Information is not knowledge. Wisdom is required to choose the ideas or amalgam of ideas from among the 286,000 pieces of information which will be effective for your organization.

It’s easy to let too much information go to your head. Not all information has value. It’s important to take time to consider what you discover.

In fact, much of what I read while “Googling” (the gerund) reminds me of the bubbles on the top of a new pitcher of tea. You taste them with the wooden stirring spoon but are always disappointed. The froth on top isn’t nearly as tasty as the tea. If you want the good stuff, you must put ice in your glass and pour deeply from the pitcher into your own glass. You probably want to sip it on the front porch while you contemplate the meaning of life (for your nonprofit).

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Rick on December 24th, 2008

The home of God is with men, and he will live among them.

We all have moments which sparkle in our experience of life. These incredible events, impossible to forget, overwhelm us with sheer joy.

You pop the question and she says, “Yes!” You’re named Employee of the Year. Your dad says, “I love you,” and you know without doubt he means it. You watch with big-eyed astonishment as your own baby inhales her very first breath. And then you laugh with giddy tears when she lets go with her very first cry. You sit with your children beneath twinkling stars on a cold, clear, dark night, a cold night … but you’re warm. Or, after decades together, your husband looks at you with misty eyes because he loves you more now that ever.

The light that glistens from these events illuminates who we become.

And these good things we celebrate. We cherish them. We retell these stories to our children and to our grandchildren. We thank God for these good and perfect gifts which come down from above from the Father of Light. We’re better because of them.

God himself … will wipe away every tear from their eyes.

But not every remembered event is good. Some things we cannot remember without somber reflection or even melancholy pangs of guilt. It may be a queasy feeling you get when you receive a letter from the IRS and remember you’ve “tweaked” last year’s numbers. It may be the lie you tell your husband about an affair you almost had. It could be words misspoken to one who could have been a great friend, words for which you were too proud to apologize.

Years later we remember these missteps we’ve made along the way. And the twinges of guilt we feel for what we’ve done to ourselves and others … well, we know we’ve earned it.

Then death and the grave were themselves hurled into the lake of fire …

Worlds away, beyond these regrets for our own actions, like on the dark side of the moon forever away from any light, there are things which happen to us that we’ve not asked for and we feel pain we have not earned and cannot comprehend. Losses occur which we wouldn’t choose in our most deranged state of mind.

The miscarriage of the baby you’ll never know … a car wreck that leaves you a widower … watching a child die and not being able to stop it … being raped by an uncle who calls it a special relationship. These things immediately suck life out of us, filling our hearts with black, hot tar, because they push us close to death.

And after them we live in pain.

Time passes and you begin to touch these wounds on their surfaces. You do it with a glib sort of detachment that allows you to momentarily ignore their impact. You shrug your shoulders and sigh, “That’s Life.” Or you say, “You know, it just goes to show that we really have no control.” And if it’s someone else’s experience … “Man, I’ll pray for you.”

And with the passage of enough time, one begins to pretend he’s unchanged or even stronger.

But inside … that hot tar that burns our heart hardens. Life becomes thick. Sparkles of joy disappear. And even years later we cry when we remember.

And regardless of our faith, our hope or even our love, the darkness still hides who we might have been had we not experienced the loss. And so we work hard to protect those places in our hearts that nothing else can touch. Like Jonah we cry, “I am angry even unto death,” for life as we have known it is over.

Then I saw a new Heaven, and a new earth … for the first Heaven and the first earth had disappeared. And the sea was no more.

Then I heard a great voice from the throne shouting,

“See! The home of God is with men, and he will live among them. They shall be his people, and God himself shall be with them, and God will wipe away every tear from their eyes.

Death shall be no more … and never again shall there be sorrow or crying or pain. For all those former things are past and gone.”

Then he showed me the river of the water of life, sparkling like crystal as it flowed from the throne of God and of the Lamb.

Nothing which has cursed man shall exist any longer; the throne of God and of the Lamb shall be within the city. His servants shall worship him; they shall see his face …

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Rick on December 24th, 2008

Some day I’ll write a book. It will begin like this:

When it was my chore as a child to clean the kitchen after supper I would set the biggest pots in the sink and fill them with soapy water. In my little hands they were unweildy and difficult to manage. I knew after my Mom heard me say the magic words, “these need to soak”, I could walk away and trust her to clean the big pots.

Tonight I remembered this bit of childhood while standing in the kitchen. My wife had cleaned up after supper. I found three large pots filled with water sitting in the sinks. Difficult for her to manage, I know “they need to soak”. I smiled, grabbed the dish detergent and sponge, scrubbed the pots and dried them.

With my hands in the hot water, I realize the time has come. I knew it would but I couldn’t start until it became necessary, until I actually felt the need.

It’s time to begin writing. It’s time to begin sharing the changes brought by Multiple Sclerosis (why do we give it the respect of capitalization?) and it’s time to share the impact those changes have had on my wife, my family and me.

Now that it’s time to write, I’m sure I should begin by clearly establishing the various reasons.

When my wife was diagnosed with MS, we were shocked. And while the information was helpful in a “this you need to know” sort of way, the reading materials we received from doctors and those I found in the library were too clinical to help my heart. It was great stuff for the mind and good information about all that we would or could experience, but it presented no pathway for the emotional journey.

I’ve worked as a performance improvement director for a large residential treatment facility for children. I’m skilled at planning, implementing plans, observing results and reiterating the process after tweaking the plan in response to undesired outcomes. It’s easy for me to distract myself from the important matters of my heart by focusing on the practical aspects of preparing myself and my family for an (un)certain future. Many things I do simply because they must be done.

So the first reason I write is because I want to be helpful to anyone who has read the clinical materials and still feels overwhelmed by the emotional aspects of an MS diagnosis.

Another reason is to honor my wife. And through the story I tell of us, to honor every person who lives with MS and other diseases and those who love and support them. No adult truly believes life is fair. Most of us grow past that fantasy during adolescence. Even so, there lives deep in our hearts the desire that life be fair. And when it’s not, we ache for what “should” be.

I have a picture on my desk which I took on our honeymoon. It’s a reminder of many things for me, but mostly it’s a memorial to joy, fear and commitment. Exploring Eureka Springs, Arkansas, we noticed an observation tower. Robbie said, “let’s go look.” Afraid of heights, I looked at the tower and noticed the first platform about 15 feet above the ground. I thought we’d stop there, look and return to the ground.

She started up first and I carefully followed her walking to the first observation level. She wasn’t there. Instead I could hear her running up the metal steps to the top. I faced a delimna. Do I stand here and wait for her to come down (and look like a wimp) or do I venture to the top?

One can’t be proven a wimp on one’s honeymoon and feel good about it. I over came my fear and with a hand on both stair rails slowly walked to the top. A few minutes later, with the tower moving in the wind, and my stomach knotted up, I stepped to the top of the tower. She was standing at the edge looking out across the valley. “Come here,” I said “and kiss me.”

We kissed. I held the camera out at arms length pointed it at us kissing and I tripped the shutter. “Gotta go,” I said and started slowly and carefully back to Earth. It’s my favorite photo. She’s taller than me in the photo because I was standing on the top step. The wind is blowing her hair in my face. We’re against a blue sky. The photo is in a frame, matted with a red heart (faded as time has passed) with two doves cut into the matt in the upper corners.

That’s how it was. Swirling, giddy, joy. Just the two of us on top of the world on a beautiful, blue-sky day. That’s how it should be. But of course, life is not fair.

Third, I write for catharsis. During the last several years it’s as if I’ve looked at the world with tears behind my eyes. Seeing my wife slow down, listening to repeated efforts to get a word off the tip of her tongue, doing the grocery shopping because the effort would wipe her out for a few days, living with all of the constant reminders of what was, what is and what may be is like going to a movie, watching the sad scene at the end and holding the tears back so that you leave the theater misty-eyed but not so much that anyone would notice. You know it touched you. But you don’t want anyone to know how it touched you. You don’t want to be vulnerable. But when I write my book, I’ll be vulnerable. I’ll write the things I don’t say to others about how my wife’s MS has touched me.

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Rick on December 24th, 2008

Welcome.

I’ve blogged for years, but never just for myself.  Now I will.

You may or may not appreciate all you read here.  I know you may often disagree with me.

That’s good.

Occasionally, I want to write something that will not fit neatly into one of the other blogs I maintain.  I’ll put it here. But don’t expect a theme.  And in terms of frequency, it will be hit or miss.  From Theology to Vista complaints, from growing roses to nonprofit leadership, and from Einstein (my dog) to what I think about business, politics, etc., this is where I’ll touch base and write what I wish.

Enjoy!

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