Lessons from Lou

This blog is about my journey through the brain tumor world with my dear husband, Lou. While not a journey I would wish on even my worst enemy, it is a journey that has enlightened and awakened me to what lies within us, and around us, each and every moment of each and every day. There are lessons here....lessons in this journey.....lessons from Lou....that I would like to share with you.

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Location: Chicago, Illinois

Picture of Lou (sick) and I at a party, circa 2005, long ago and faraway. I'm now a middle aged widow, trying to get my life back together. Mother of two young adult sons, living with two adult cats.

Tuesday, August 29, 2006

Yesterday

"Yesterday, all my troubles seemed so far away...." Yesterday, he could manage a smile. Today, he cannot. Yesterday, he looked peaceful, Today, he has a frown. Yesterday, he was trying to speak. Today, he cannot. Yesterday, he took juice on a sponge, Today, he did not. Yesterday, his eyes were focused. Today, they are not. Yesterday, we had two wheelchairs. Today, we do not. Yesterday, my heart was broken, Today, it is shattered. What a difference a day makes.

Monday, August 28, 2006

The Little Prince

"Of course I love you, " the flower said to him. "It is my fault that you have not known it all the while. That is of no importance. But you -- you have been as foolish as I. Try to be happy...Don't linger like this. You have decided to go away. Go now!" For she did not want him to see her crying. She was such a proud flower..... --From The Little Prince

Wednesday, August 23, 2006

The Open Door

There he was, sitting up in his bed, on sheets the color of his eyes, dusk falling, candles lit, lovely music. Outside our windows, the skyline twinkling, the lake a misty lavender blue. Surrounded by his family. His sons, me, and a dear dear friend. There he was, holding court, of sorts. It started out as dinner. Dinner with Lou. It started out as most visits do....."how are you ", "how's the family", "what can I do for you".....always the same questions. Always about the other person. Never about himself. We laughed some, we chit chatted. Some of us ate. Some of us had wine. And then, the door opened. Just a bit. And we went through that door, together, and found Lou. Our Lou. Lou of the penetrating, thought provoking questions. Lou who never was much for chit chat. Lou who always got to the heart of the matter. The voice of a national debate champion now soft, slow, winded....the deep, warm baritone now hardly a whisper. The music stops. We lean ever closer to hear, hanging on every word. We are amazed at the thoughts he has. The questions he raises. He sees into our hearts, our souls. We exchange glances....."what IS this", we telegraph to each other. I sit back and savor it, watch it unfold. It's magic. It's magic, and it's heaven. I am sure of it. After awhile, Lou tires. The soft voice trails off. The door closes, ever so gently. We sit in silence. One by one, we leave the room. I walk our friend outside, still wrapped in the magic. We hug and the tears fall. I walk back to Lou. I watch him as he sleeps, I see his heart beating. I wonder if the door will open again any time soon. Must be vigilant. Must be watchful. Must be present. Thank you dear Lou. Thank you.

Monday, August 21, 2006

Hanging On

When I opened my email today, this was the daily blessing I received from a list I am on......... "When I despair, I remember that all through history, the ways of truth and love have always won. There have been tyrants and murderers and, for a time, they can seem invincible, but in the end they always fall. Think of it...always." -Mahatma Ghandi.........the author who sends the quote/blessings goes on to say.... Often, when we are in the midst of turmoil, and all around us is spinning out of control, it is diffcult to believe the storms of life will ever pass. In such times as this, we can, it seems, do nothing but tie a knot in the end of our rope and hang on. And this is all we need to do. We need only to hang on to love, hang on to light and hang on to truth. For when the storm has passed -- and they always do -- these three will remain, as strong and certain and invincible as they have been since time began. As Ghandi said, love always wins.................. I am hanging on as tightly as I can.

Wednesday, August 16, 2006

Guys Night Out

A good time was had by all. Yes indeed. From what I can gather, a good time was had by all......Tonight was Guys Night Out. Drew and Damon, and Raymond, our wonderful caregiver/friend, took Lou, along with 5 buddies, to a nearby park, for Guys Night Out. It started yesterday, with something Raymond said to Lou. I dont remember what it was exactly, but it was something that made Lou quip something about going out on the town. And Raymond picked up on that. And we decided TONIGHT would be the night. Just like that, we had a party planned (doesn't take me much as many of you know...any excuse for a party. We haven't had alot of excuses lately). Off to the tobacco shop I went today to purchase nine Monte Christo cigars. That set me back a pretty penny but who cares at this point. Then I decided it was time to crack open one of the several special champagnes Lou set aside years ago for a "special occasion". Can't imagine a MORE special one. Packed a bottle of scotch too. Can't have a good cigar without scotch. Lou was dressed in khakis, shirt, sweater, looked very dapper. Off they went at 7pm. It was a beautiful summer evening, perfect temperature, clear blue sky. It killed me not to go, but this was a guy thing. Two hours later, they returned with empty champagne bottle in tow. Smiles all around. BIG smiles all around. Hugs and laughter. And wonderful pictures. Priceless pictures. Someday I will learn how to post them here. Lou and his boys....or is it men...Damon and his first cigar...Damon enjoying his first cigar perhaps more then we all thought he would! Proud big brother. Lou savoring his cigar and scotch. Lou making an impromptu speech (but of course), everyone leaning in to listen to his now soft, quiet voice. Doesnt matter what he said, something about his father, and friends. Lou tumbled into bed and was asleep before the light went out. Oh what a night. A magical night. And this time, I didn't sweat it. I didn't sweat it at all. Lesson learned.

Monday, August 14, 2006

Mom

Lou has always loved his mother very deeply. When I first met him, I remember he called her every sunday evening. I later learned he called her every sunday evening of his entire adult life, no matter where on this earth he was. Of course, he always loved to buy her lovely presents for Christmas...beautiful clothes that she would never buy herself, jewelry, tv sets, whatever...he loved to surprise her and I think he loved her admonishments, "Now Louis....". It seemed he could never do enough for her. She was a wonderful, dear, loving woman, first generation Greek, married at a young age to Lou's father, who was born in Greece. Lou's father left Greece to find work in America, and never went to school beyond something like 4th grade. I believe his mother graduated high school. They raised four children who all went to college and managed to do well enough in life, though the youngest, Kathy, passed away at a young age to breast cancer. But that is another story. Lou adored his mother, as I was saying. She passed away about 6 or 7 years ago. She had been living in a nursing home 3 hours from here. We didn't see her much while she was there, it was so upsetting to Lou and the boys, to all of us. Very upsetting. It was not what Lou wanted for his mom, but it happened. And there was no going back once it did. I digress, only to set the stage. When the brain tumor appeared, and Lou lost his memory, he lost his mom, too. Every single day, for at least 15 months, he would ask, repeatedly, "is my mom still with us" ? In the beginning, when we thought there might be some remote possibility that Lou might recover, or might actually know what was going on somewhere in there, we told him the truth. As the experts encouraged us to do. We would tell him that she was no longer with us. It upset him terribly. The crying would be uncontrollable at times, and when it was over, he would ask the question again. And again, and again. It never sunk in. Each time, he was hearing it for the first time, each time, a small heart attack. Sometimes, we would skirt the issue. Sometimes he would ask "how's mom", instead, which was much easier to answer, we could always say "oh she's fine", because we know she IS fine. Eventually though, we moved to telling him she was in a nursing home, a nice nursing home .... we couldn't go through the pain of telling him she was no longer with us. It has just dawned on me that he hasn't asked about her recently. But then, he isn't talking all that much either. But I don't think he HAS to ask anymore. NOW I think he DOES know the answer. He KNOWS she is no longer with us. Because he calls to her. He calls to her in his sleep. He calls to her when he awakens. And today, he saw her, in the room. He saw his mom. He said so. I know he did. One of the few comforting thoughts I have these days is knowing that she is waiting for him, and that he will, finally, know where she is.

Wednesday, August 09, 2006

Grilled Cheese, Please

It's time for grilled cheese. Grilled cheese, tomato soup. Macaroni and cheese would do, or chicken pot pie. Pancakes? Maybe, but too much work. Ice cream, ice cream is good. And NOT the low fat kind. Hiding in bed with the covers over my head, THAT would be good. THAT would be very very good. Hanging on to Lou. Pretending this isn't happening. Pretending we are just sleeping in like a lazy saturday in the old days. Wake me when this is over, please. Somebody, PLEASE just wake me when this is over. Somebody please do THIS for me....DO this whole bit now. THIS PART. I CAN'T. I CAN'T do THIS. I can't. I can't WATCH this. I can't LISTEN to this. I can't BEAR this. I can't get through THIS. I can't see beyond THIS. I can't accept THIS. I can no longer find the "good" in this. Been there, done that. It's time to hide. Or get angry. Or cry. Or eat grilled cheese. Or all combined. I could do ANY of the aforementioned things. But THIS, THIS, I cannot do. Dear God, help us.

Friday, August 04, 2006

The Pack Rat

Lou is a pack rat. It always aggravated me. We have business files from the 1970's in our closets...."you never know", he'd say. Sigh. I knew, but there was no convincing him. Those files have not been touched since they were packed away! So, when this thing was diagnosed, and Lou lost pretty much all of his ability to think straight, I realized at some point, this was going to be my job. Sigh again. It's a big job. It's more then the files. It's piles of papers, bank statements back to the 80's, photos, trip mementos, lists and more lists, receipts, who knows what else. The poor guy just never had time to get organized, but wanted to save it all, "just in case". More sighs. So, the other day, I started with two file boxes that have been somewhat hidden in our bedroom in a corner. Besides the usual very outdated papers I am sure we can do without, I stumbled upon other things....other, more important things. Things I didn't expect to stumble upon. Things I am glad I stumbled upon.... the letters I wrote Lou when we were dating (we only dated for two months before we were engaged so there aren't all that many of those!). Oh how young I was, at 28 no less....and totally swept off my feet. It all came back to me. That flip flop feeling in the stomach you get when you are newly in love. The funny things he would do. The sweet things he would do. How skinny he was! How exciting and different he was. How incredibly brilliant he was. How sure I was. How immediately sure I was. I found the calendar / chart he made that led up to our wedding, all the things to do....ever the organizer and list maker...in his tiny tiny handwriting, there it all was...week by week, with the check marks. He carried that thing in his brief case to our wedding! Fortunately, I do not think he actually consulted it that day. I had forgotten about that chart. He made another one before Drew was born. That's Lou. I don't think he was a boy scout but he sure would have made a good one. And then I found pictures. Pictures from our trip to Wimbledon, I was pregnant with Damon. Pictures from the Masters, same year, earlier in the pregnancy, we had just announced it. How happy we looked. Pictures from our first trip to Greece...tan and carefree, cigars and champagne. Our dear friends Debbie and Larry in tow. How young we looked. How GOOD we looked! That was US??? Wow, so long ago. I didn't get alot of cleaning done. I went over and over those pictures. Tears, yes. But smiles too. How lucky I have been. How incredibly fortunate and blessed we are. To have had a true and lasting love. To have traveled the world. To have two wonderful sons. To have dear friends and family. I put these things away in a special place, with a warm feeling inside. I kissed Lou on the cheek as he lay napping on the bed. I thanked him, for everything. For our life together. And yes, for being a pack rat.