Paul Orso: Going viral

I was beginning to think the GPS lady had become confused.  My first clue was when she told me the street changed names but the designated house, the address of which was the first street, would be on my right after the name-change.  “Foxborough Circle turns to the left and becomes Broadmoore circle and your destination [an address on Foxborough Circle] will be on your right after the turn”.  Huh?  Five minutes after I first rapped on the apparently correct house without response, I decided the GPS lady needed a map and got back in my car.

As I backed out of the driveway, a van stopped on the street, then pulled into the driveway that I had just vacated.  A fire-plug man with a wrestler’s build jumped from the driver’s seat.  In a hard voice he asked if he could help me.  I’m Paul’s cousin, I’m here to visit, I told him.  We had not been told anything about that, he replied.  He turned back to the van, looked into the interior where I knew my cousin Paul would be sitting though I could not see through the tinted windows.  I saw the fireplug’s body ease; his charge was safe — I had been cleared.  He gestured that I should follow him back onto Paul and Kathy Orso’s property and I did so.  I know a drill sergeant when I see one, and I comply.

I stood beside the van, next to the broad deck with its wheelchair ramp.  The driver, Paul’s aide for the day, strode toward me, shook my hand, and told me his name.  He gestured, wait on the deck, and again, I followed his order.  I watched as the door of the van slid back.  Paul’s face held the same beaming smile that I have always seen there and his first words boomed across the driveway:  Hey Cuz, where’s Patrick?  My son: but he had had to drive northeast from the Central West End home where we had stayed during our whirlwind visit.  Paul and Kathy live west of St. Louis, on my way home.  His boss phoned!  He had to get back to Chicago!  I called, and left the deck as Paul, in his electric wheelchair, came down to the pavement.

I threw my arms around his body, grown more slender now as Paul’s ALS progresses.  His arms touched my shoulders; I felt the genuine affection flow between us.  Paul introduced his aide and we shook hands again, this time a bit less stiffly.  Then we all went into the back door of the beautiful home and settled in the kitchen.

For the next two hours, we talked as cousins talk.  He told me about the pending release of album number three of his music.  He spoke of one of his siblings, of whose health troubles I had not been aware.  He asked after my son, Patrick, and Patrick’s graduate studies.  He mentioned the pending births of his next grandchild and his sister’s next grandchild.  Hey, Cuz.  Genealogical question:  What were Grandpa Lyon’s parents’ names? he said at one point.  I admitted that I did not know.  Who would know? he asked, and I thought a minute before identifying one of my sisters.  Paul’s keen eyes met mine.  Would you e-mail her and ask?  I’d like to know.  I felt a sense of urgency unspoken between us.  I thought understood it: the fullness of time.

I watched his chest heave with the labored breathing caused by his disease.  But he never mentioned being tired; he never spoke of his suffering.  He praised his caregivers.  He voiced his admiration for his wife’s tirelessness.  He spoke of my brother who died; his parents; my father; my mother.  Those who have gone from this world.  Your mother had a hard life, he quietly observed.  A husband with troubles; all those kids; a house; a job.  I agreed with him.  We let that stand.  I miss your brother, he said softly.  I agreed again, and a moment of silence passed.  We were friends, your brothers Steve and Frank, me and my brother Charlie.  We were friends.  I had no doubt.

Hey Cuz, we’re doing a phantom release party for my new CD and you’ve got to help it go viral.  His smile flashed.  We’re sending the release out by e-mail to eighty people, two tiers of family and friends.  You push it out; make it go viral.  I’m counting on you, Cuz.

He talked of the musicians who helped him finish the CD.  I lost my singing voice, he remarked, then smirked.  I know, I know, don’t say it.  What singing voice?  I joined his laughter.  He named each performer, told me what they played, told me of their role in helping get this third, and presumably final, CD released.  I told him that I didn’t have CDs one or two.  Go to my website, he scolded me., it’s hooked to PayPal.  His grin again:  And guess where the CDs get mailed from?  He gestured with one gentle, weak hand.  PayPal sends me a notice, ‘Hey Dumb****, your cousin bought a CD, send it to her!’.  The laugh again.  Well, not ‘dumb****’, you know.  They can’t say that.  He hasn’t lost his sense of humor, my cousin Paul.  ALS can’t claim that too.

At one point Paul leaned forward in his wheelchair to place his piercing gaze right into my heart.  You are a woman of a joyful spirit, he said to me.  The joy radiates from you.  I can see it.  I felt the warmth of his gaze.  I could not speak; I did not trust myself.

The time came for me to leave.  I noticed a large dispenser of germicide with a sign that said Please use this Sanitizer.  Shock riddled through me.  I hugged you without using any of that stuff, I said to Paul.  He moved toward me, gesturing for another hug.  I held him.  He said, softly into my sweater, You hugged me like family hugs.  We don’t need anything to protect us from each other.  I could not let him go.  I stood bent over him, my arms wrapped around him, for the longest minute.  And then we took a photo and I left, promising to help his CD go viral, telling him I loved him, turning back to see his smile when he said I love you, Cuz.

I did not let the tears fall until I turned the corner, out of sight.

My cousin Paul Orso had a career but I don’t know what it was, I’m embarrassed to say.  He has a gorgeous, powerfully talented, fiercely loyal wife Kathy; three loved and loving children, Nick, Nathan and Grace; one adorable granddaughter Lorelei; and a grandchild on the way.  He has eight siblings, a host of cousins, nieces, nephews, brothers- and sister-in-laws.  He is a singer-songwriter, with two CDs under his belt, and a third about to release, in a phantom, virtual release party which a legion of Orso, Corley, and Mack cousins will help go viral.

And Paul Orso has ALS.  But that comes last in this account, after you note the scores of people who love him, the creativity he has passionately pursued, the parents he misses, the people, including cousins, whom he cherishes.  ALS has claimed a lot of what Paul could once do.  But it has not dampened what he is, nor what his spirit gives us.  Nor will it, even in its terrible ending.

Paul Orso is a brother, husband, father, son, uncle, grandfather.  And he is my cousin.  He blesses all of us with his joyful spirit.

Me and Paul Get Serious

Me and Paul Get Serious

Check out Paul’s website — buy his first two CDs — read about his battle with ALS, and watch for the virtual release party for his third album:

Paul Orso ALS Lou Gehrig’s Disease Music and Life


One thought on “Paul Orso: Going viral

  1. Cindy Cieplik

    Thanks for this! Great post. In all of my years as a nurse, I have never known a man afflicted with ALS that has not been in a fantastic intimate relationship with his wife. Just an interesting observation. Their love is always deep, expressed openly, very romantic, and true to the very end.


Leave a Reply

Your email address will not be published. Required fields are marked *