Somebody down the street always has it worse

One morning last week I had terrible trouble buttoning the top button on my dress shirt. My right arm and hand are largely decorative, as opposed to functional, so such simple tasks can be difficult. It may strike you as a silly frustration but for the briefest moment I felt just a little sorry for myself.

As suddenly as that emotion hit me it was replaced by the thought of my friend Jennifer Longdon who struggles with the very genuine difficulties of navigating a wheelchair and the debilitating troubles brought on by a random highway shooter several years ago. Jennifer recounts her challenges often on Facebook and any friend of hers quickly comes to realize the real pain of disability.

I felt foolish for lamenting my trivial challenge when many people like Jennifer know genuine pain and obstacles from hell.

Actually I learned that lesson very early in my life and I tell the story in my book, “Some People Even Take Them Home.”

When I was 11 or so and still in a pediatric ward I contracted an infection and was placed in protective isolation to protect against the dangerous spread of mysterious bacteria to other patients and staff. Everybody who came into my room, from nurses to doctors to Mom, donned surgical robes and masks.

As I wrote in the book: “The desolation and loneliness of that imprisonment were suffocating until two surprising teachers arrived to show me how fortunate I was.

In the room next to me were two young people I never met. They had as profound an effect on me as anyone else in my 64 years. They were two-year-old twin boys and they had been severely burned in a Saginaw, MI house fire. I knew the boys only by their constant and hideous screams. They were critically injured and their skin was obviously gravely tender. I listened to them yell in agony for hours on end. Horrible, piercing cries communicated unbearable torment.”

Even at my tender age I was sharp enough to realize that my own infection was small potatoes. Those boys taught me the true meaning of suffering but I vividly remember the slow dawning of a vital truth.

I have no idea if those little boys survived. I pray they did. What did survive was the belief burned into me that somebody down the street, or around the corner, or in the next hospital room always, always, has it worse than I do. That’s why I try so hard to smile through tough times. I hope those screaming, crying boys have made me more caring and more generous.

A little thing like that damned shirt button serves to remind me how grateful I need to be.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

Love is a verb and it would be nice if we all understood that

My new wife, Candace Hadley McGuire, is smart and deeply compassionate. She amazes me with her concern for other people. But she also articulates her concern beautifully.

If I had a nickel for every time she tells me “love is a verb,” I would have a damn big jar full of nickels. Her powerful point is that love without action, love without good deeds or love without solving a problem is hollow.

It is easy to say I am in love with you, but it is far more difficult to say I love you and my behavior will prove it.

Pope Francis’ visit to the United States last week prompted me to think of Candace’s words. The Pope doesn’t spout theoretical puffery about love, he goes to lunch with the homeless. He hugs immigrants and pays special attention to children. He makes love a verb and many Americans are stumped by his behavior. One Fox News commentator said he’s “tired” of the Pope and suggested he is in the wrong country.

Perhaps the Pope doesn’t have American values and, sadly, that may be a good thing. This media obsession with whether the Pope is liberal or conservative is absolutely silly. He is a man of faith who believes that rules and prescriptions don’t create love, actions do.

Rather than attempting to categorize the Pope as liberal or conservative, Americans should be listening and watching Francis love. The truth is that in our me-obsessed, Ayn Rand believing, selfish society, it does seem radical to actively love everyone. Americans keep insisting we are a Christian nation, but too often we hate people who are different than us and we care little for those who have less than we do. The rhetoric from some Presidential candidates is terrifically anti-Christian. That Sermon on the Mount thing from Jesus should guide us to love and care.

If we truly let Pope Francis show us that love is a verb, this country would look different. It might actually look like a country concerned about something bigger than self-interest.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

Divorces produce grief too

As I have discussed grief with people since the death of my late wife Jean last year, a difficult truth has dawned on me. For a lot of divorced people grief is the only effective word to describe their experience.

Certainly the permanence and finality of death make that a very different process. However, I am repeatedly struck by the deep sense of loss that divorced people disclose. I talked to a man last week who referred to three or four years of desperation that blocked him from moving forward. Another man I know is fighting despondency in ways that are achingly similar to the way spouses grieve over death.

In no way am I trying to put divorce and the loss of a spouse to death on the same plane. They are different just because of the permanence and hopelessness that death brings.

In divorce, there is often betrayal, guilt and regret that magnify the loss. But when a spouse dies, I know from personal experience that even when the marriage has been very good, there is serious second guessing and worry about whether you treated your beloved the way she/he deserved to be treated.

We all know that we should be deeply sorry when someone loses a spouse to death. The essence of my point is that we should also be sorry when a person loses a spouse to divorce. The divorced person is often, but not always, feeling a similar sense of  loss, loneliness and especially onliness which I wrote about in this post.

The ongoing reality of my own grief, and now after falling in love and marrying a woman who grieved the loss of her husband, I am coming to appreciate the singularity of the impact of losing a spouse to death. Yet, I am also coming to realize that a deep sense of loss over a divorce, a lost job or a devastating illness carries with it a somewhat similar load of emotional upheaval.

One of the most distinguishing reactions after losing a spouse to death is the almost indescribable loss of control over every aspect of your life. That is accompanied by a gripping sense that nothing can ever be the same again. That arouses great sympathy for the grieving spouse as it should.

I only submit here that divorced men and women deserve some modicum of the same empathy because their loss is also painfully and deeply disruptive.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

We can learn important life lessons from how companies treat their clients

I have had several encounters with businesses trying to serve my needs recently. I think I came away from those encounters with new insights about how we ought to treat people.

Over the weekend at my wedding, Pittsburgh Blue, a wonderful Minnesota restaurant, and a catering company called Fabulous Catering, dramatically exceeded my expectations and delivered a tremendous customer experience. The rehearsal dinner at Pittsburgh Blue and the reception catered by Fabulous, were wonderfully executed by committed staff and people who genuinely cared for clients.

Last week, in Phoenix, my new wife and I were ignored and made to feel as if we were the business’s last priority. It was pretty clear that the Phoenix business had internal problems and challenges that were more important to them than the customer’s needs.

As I have reflected in the last few days, it is clear to me that the Minnesota businesses made us number 1 and they were totally invested in creating a positive experience. They understood that a marriage is a very big deal and that their companies were not just catering events, they were building lasting memories. They behaved accordingly. They were outwardly focused.

The Phoenix company was dealing with a very sensitive issue for us. In our minds, our case was the most important in the world. The Phoenix company did not act as if they recognized that. The company representative acted as if her needs trumped ours.

My close friend, Pat Dawson, actually consults on customer experience. This is a major line of inquiry for companies attempting to raise profits through better relationships with customers.

My interest in this subject is different and more personal. I wonder how many of us really attempt to appreciate that the person we are dealing with is totally focused on their own predicament and they want our help to escape. Many of us complain that “she is totally focused on herself,” or “he only thinks about me,me,me!” What part of that surprises us?

We do the same thing, yet we often expect others to put aside their own self-interests. Many of us have been taught the golden rule, to treat others as we would want to be treated. But there’s a serious problem there in that many people do not share our expectations and standards. A more appropriate approach is to treat people the way they want to be treated.

That sort of thinking allows us to meet the other person where they are. It recognizes that their fears, and uncertainties are real to them even if you find those fears silly. If we treat people the way they want to be treated we validate them in ways we cannot if we cling to our own rules and expectations.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance

 

Jason, the remarkable gift that keeps on giving

A million thoughts flooded my brain Saturday as I married the lovely and charming Candace Medd Hadley. I will probably discuss many of them in future posts, but my son with Down syndrome, Jason McGuire, took a big share of those thoughts.

Jason was his ebullient self throughout the day, though he was particularly worried about the one task I assigned him. Jason was in charge of handing the wedding rings to the priest. His incredibly loving siblings, Tracy and Jeff, were as concerned as Jason was about his job so they took him to the church basement and practiced. Jason executed the exchange several times to his brother and sister so he was ready when the time came.

Here are the words of his job coach at his workplace: “Jason  was very chatty about it all and said his favorite part was holding the rings! He showed me step by step what his job was and said he didn’t drop the rings or get them stuck on his finger. He said it was good they didn’t get stuck otherwise he would have had to marry his step mom! He had such a great time and he is so happy.”

Oh, what a mess that would have been if he would have had to marry his step-mom. There is a country song in that to be sure. That logic is typical of Jason. He believes that you wear seat belts to prevent an accident. I remember his mom, my late wife Jean and I were once walking through the underground metro in Paris. We were very confused because we only understood a very little bit of French. In our befuddlement, Jean observed, “this is how Jason goes through life, with a little bit of a clue, but never completely understanding.”

That phenomenon was in full effect at the wedding reception Saturday. As a close friend of mine put it, “he held court like no other.”  Yet, when his brother wanted Jason to join him for a toast he hated to be pulled away from his wedding cake. There must be priorities and a toast versus more cake didn’t seem close to Jason.

As I watched, and now reflect on Jason’s delightful antics and the way he endears himself to everyone he meets, I also reflect on a piece of state legislation in Ohio. Abortion opponents are pushing Ohio to make it illegal for a doctor to perform an abortion if a woman is terminating her pregnancy to avoid having a baby with Down syndrome. I find the proposed legislation an incredible invasion of privacy and an infringement of civil liberties and generally repugnant. Yet, as I write in my book “Some People Even Take Them Home,” “I can say unequivocally that I believe our world would be an inferior place if there were no Down syndrome children. The pursuit of the perfect baby would deprive our world of real joys and triumphs. I hope the optimism that is inherent in this book may provide intellectual and emotional fuel for making those life-changing decisions.”

I don’t wish Down syndrome on a child or parent but last Saturday my overpowering thought was how awful it would be if there wasn’t a Jason at that wedding to touch people’s hearts. His sweet cluelessness and deep kindness makes us all special people.

Tim J McGuire is the author of “Some People Even Take Them Home” A Disabled Dad, A Down Syndrome Son and Our Journey To Acceptance