If I want to be inspired by you, by God I will be inspired

Something has been eating at me since before the holidays.

A woman I admire deeply, essentially says I can’t admire her because I am just making myself feel better.

The argument is when somebody says “You’re so strong,” “you’re so brave,”… these are stories we tell ourselves so we don’t have to mess with anther’s jagged edges. We are told these are not compliments, they are abdications of compassion and understanding.

A well-known feminist and disability activist, Harilyn Rousso wrote a book in 2013 called Don’t Call Me Inspirational: A Disabled Feminist Talks.

Her argument is similar to the woman I admire. She comments in this article: “Inspirational is an easy reaction.” The author of the article said what Rousso resents is that people feel inspired by the fact that she gets up in the morning, gets dressed, dares to head out the door, and lives her life despite what others see as insurmountable obstacles.

Harilyn writes in her book, people think that “If you were me, you’d never leave your house and maybe even kill yourself. So I am inspirational because I haven’t committed suicide–yet.”

The article says Rousso contends calling her inspirational “without hearing what I say or knowing who I am is just a label or a stereotype. I’d rather you wait until you get past your initial, superficial, prejudicial reactions, see who I am and then decide if you like me or even hate me…at least those judgments would be real.”

Okay I will stipulate to the fact that just because I see somebody I should not and will not find them inspirational. I never have. However, if I observe someone carefully and I find them inspirational, if they fuel my fire to be better, if they make me see that I have to buck up and face my own challenges, then by God, I will choose to be inspired and I won’t feel guilty about it.

Let’s face it, I approach this from a different angle than many. I find many people inspirational, but because of my physical disability, my son’s Down syndrome and the recent death of my wife, I have also been honored to be told many times that I am inspirational.

I do not make the choice to judge or condemn the person that finds me inspirational. I know I am not perfect and that a more thorough search would produce a better inspiration, but who am I to judge what inspires that person?

The core problem with Rousso’s anger, in my view, is she is making this all about her. I think it is important to respect the feelings of the inspired person. If somebody is inspired by what they see as courage or determination or even kindness, I think I need to respect that.

I trust that anyone with a disability can absolutely and quickly smell and feel pity and that pisses me off too. I have felt it and I despise it. I think it is a very dangerous assumption, and probably an expression of my own repressed anger to equate expressions of inspiration with pity.

I believe we all have a purpose in this life and if one of mine can be to inspire then please feel free to be inspired.

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

Musical lyrics can contain the soul of life

My musical career is checkered.

When I was in sixth grade my class and school intensely prepared for an annual Music Festival. As we neared the big date the school’s music teacher, A Dominican nun, approached me and five classmates. She carefully seated us toward the front of the school’s bleachers in a tight group. This was my big moment. We were obviously being prepared for a big solo or ensemble piece.

Without much affection or gentility the good Sister said, “you six just mouth the words.” I was crushed. I suffered the same indignities throughout my academic career and when I was a fairly accomplished actor in high school and college I was doomed to the non-singing roles in musical theater. People look askance when I sing the National Anthem too.

The crowd of musical experts was not wrong. I can’t carry a tune and I don’t know a musical chord from a bungee cord. I do love lyrics, however. As I have reported in this blog before I am a fan of something called alternative country music largely because I find the lyrics so compelling.

Saturday night I was profoundly moved by a Paul Thorn concert at Phoenix’s Musical Instrument Museum Theater. Thorn, a former boxer, is a very funny man. His humor entertained, his singing seemed great to my tin ear, but Paul Thorn’s lyrics were captivating and often stirring.

Thorn is the son of a preacher and though he is somewhat sardonic about that experience, his father’s vocation has obviously bred deep roots of philosophy and spirituality. Some of Thorn’s lyrics are funny, like “It’s better to be the hammer than the nail,” but many provoked a couple of days of introspection.

One of his Most powerful songs was “I hope I am doing this right.”  This lyric really got me:

BEFORE I GO TO BED
I KNEEL AND PRAY EVERY NIGHT.
I WONDER IF GOD’S PROUD OF ME.
I HOPE I’M DOIN’ THIS RIGHT.

But then Thorn hit me with the chorus;

THE MORE I LEARN THE LESS I KNOW
THE MORE I CHANGE
THE MORE I GROW.
I PRAY THE ROAD I’M TRAVELIN’ ON WILL LEAD ME TO THE LIGHT
GOD I HOPE I’M DOIN’ THIS RIGHT.

I deeply admire a folk singer who can pose such a fundamental question of life with verve and talent. I don’t know about you but I wonder all the time whether I am doing this life thing right. Thorn’s words are not going to leave me soon.

But the talented musician wasn’t done with my soul for the evening. He asked another question I ask myself constantly, but probably don’t act on enough with the song titled “What Have You Done to Lift Somebody Up?” That powerful chorus goes like this:

What have you done to lift somebody up?
When have you helped someone who’s got it rough?
Oh we can change the world with a little love
What have you done to lift somebody up?There is a chance I was in a particularly reflective mood Saturday night, but I think an artist who can explore the basic lessons of life and entertain at the same time is a precious natural resource.

We all get motivation and provocation from strange and different places, but Saturday night a folk/rock artist from Tupelo, MS made me think good thoughts about life on this rotating sphere of ours. I hope those powerful lyrics make me act too.

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

Do people speak from the other side or do we hear what we want to hear?

I am not a fan of the idea that we get messages “from the other side.” I have always found the idea that people hear voices of the dead real creepy.

And yet, I believe in the Divine and I actually have had personal experiences with messages from what I believe was the spirit. On page 26 of my book “Some People Even Take Them Home” I talk about one of those moments that occurred hours after Jason was born as I ate clam linguine. I wrote: “To this moment I cannot explain the source of my uneasy feeling, but that odd emptiness in my stomach is an overwhelming memory because it was a prelude to one of the most important spiritual moments I have ever experienced and I was totally unprepared. Moments like these do not advertise themselves. They do not send you an advance message to be on guard. They possess you, you do not possess them.”

“The haunting thing about this moment the night of Jason’s birth was that it brought simultaneous thoughts and emotions. I knew with a strange, unequivocal certainty that the ridge on my son’s stomach was bad news, that my fears were completely justified. Yet, at the same time, there was a palpable, comforting presence assuring me everything would work out. Fear and comfort locked in mortal battle, but comfort, with the “Other” on its side, clearly won.”

I have actually been blessed with two other inexplicable interventions from “out there” in my life. My Catholic faith tradition tells me it’s the Holy Spirit. Some people of every faith, and even some non-believers, know that feeling of an “Other” inserting itself into their raggedy, unworthy life. One was job related and the other involved a serious surgery. In each of the three cases I can affix the exact location of the source of the intervener. The one at Jason’s birth was over my left shoulder and it felt very close to my ear. The second intervention was in the same location and the third was out in front of me, to the right.

Despite those very clear experiences I have been quite skeptical when other widows and widowers tell me they have received communications from their spouses. One widow told me about lights flickering in her house and a widower told me he often felt his late wife’s presence with him. I had heard nothing from my wife Jean since her death last June so it was easy to remain polite but skeptical. I had to believe such things were poppycock or I had to believe Jean had just moseyed onto the other side without much thought of me.

Tuesday morning changed all that. I write what follows, not to convince anyone, but to simply share my experience and my belief.

I walked into my office Tuesday and as I do everyday I looked at Jean’s picture on my desk. Tuesday, Jean’s always beautiful smile seared my soul. For a second or four I basked in the power of that smile and I “heard” or perhaps “felt” the words “What you are doing Tim is very good and I am really okay with it.” I wish there was more but there wasn’t.

At that moment a sanguine sense I have only experienced three other times in my life overwhelmed me and I smiled like hell right back at that picture.

I know that some readers are shaking their heads in disbelief and worrying that McGuire has lost it. I am just as sure there are others who have had similar experiences and are nodding their approval and understanding.

Each journey is our own.

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.

The illness played a more important role in grief than I understood

As the difficult overwhelming pain of grief turns into a sustainable and tolerable melancholy, perspective increases. I have replayed all aspects of my wife’s illness and death and one of my great discoveries is that my wife Jean’s actual illness started the grieving process and took a far greater toll than I realized.

Only distance and observation of the struggles of other people who have grieved, and are grieving, have allowed me to appreciate that I started grieving months before my wife Jean’s death in June of 2014.

I wish now that I would have recognized the fears and tumult I experienced as Jean struggled with countless blood transfusions and long-shot medical treatments were really a part of its own kind of grief.

It it now clear to me that the powerlessness, guilt and total frustration I felt was indeed grief. And, I was even more unequipped to deal with that grief than I was with the grief brought on by Jean’s death.

Not too long ago a friend told me his wife was chronically ill. It was as if a spear lanced my heart. I actually started to cry because I suddenly remembered that’s when my life and perspective changed. When we found Jean had cancer I was frightened, but when we were told she was chronically ill my world started to slide into an abyss. In retrospect, I can clearly see that is when I started to grieve. Somehow I was rocked by that observation more than I was by the cancer diagnosis.

Within six months of that observation Jean died. I know that some people live several years with that chronic designation with the same sad result. My heart bleeds for them.

I write this not to frighten, but to gently suggest that those people dealing with a seriously ill spouse may be fighting grief without appreciating it and should consider finding someone to talk to about it.

I have written about the immense value of a grief counselor as I dealt with Jean’s passing.  In hindsight, I would now advise someone dealing with a chronically ill spouse, where death is a possible outcome, to also seek counseling.

I belief it would have made me wiser, a better husband and far more peaceful.

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

“I’m gonna live till I die”

The last month or so has been traumatic, eye-opening and the motivation for great resolve.

In the last several weeks I have been aware of several tertiary friends, acquaintances and friends of friends who have died quick deaths in strange circumstances. In addition, I have three or four good friends who are suddenly battling big, serious illnesses. Then last week I was diagnosed with a skin cancer that I am sure will be fine, but it was one more slap in the face and the consciousness. Nothing is guaranteed to us. This remarkable ride we call life can end with the next breath.

Obviously, further fueled by my wife Jean’s death last June, for the last few weeks I have been telling friends that my new mantra is a very crude expression of Carpe Diem, Seize the Day. I must make the most of every day in every way.

Monday morning I had breakfast with a very funny, upbeat friend who has had a years-long struggle with cancer. He had just gotten up off the mat from a serious side effect of chemotherapy. He was his normal cheerful self, but midway through his Eggs Benedict he turned into Frank Sinatra and stared singing “I’m Gonna Live Till I Die.”

In a tenor that will not win him a recording contract anytime soon, but with considerable passion, he sang:
“I’m gonna live till I die!
I’m gonna laugh ‘stead of cry,
I’m gonna take the town and turn it upside down,
I’m gonna live, live, live until I die. They’re gonna say “What a guy!”
I’m gonna play for the sky.
Ain’t gonna miss a thing,
I’m gonna have my fling,
I’m gonna live, live, live until I die. The blues I lay low,
I’ll make them stay low,
They’ll never trail over my head.
I’ll be a devil, till I’m an angel, but until then Hallelujah gonna dance, gonna fly,
I’ll take a chance riding high,
Before my number’s up,
I’m gonna fill my cup,
I’m gonna live, live, live, until I die!”
I was moved and thrilled by my friend’s attitude and it completely affirmed my Seize the Day philosophy. We simply cannot worry about what other people think or say about us. We cannot hurt people and we must not beself destructive but we can definitely “fill our cup,” and we must. We can fill our cup by making a difference with our work, through our example and in the ways we love each other. We need to follow our own rule book and not worry about all the people who tell us we “should” do this or we “should not” do that.Do me a favor and reread the  lyrics of “I’m gonna live until I die” every day. Decide at the end of every day whether you kept the blues low, whether you had your fling, whether you rode high and whether you filled that cup with all the good you have done for others. That’s what I am going to try to do, because “I know not the time or place. “

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.