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, November 28, 2006

Stop The Music, I Want To Get Off

I can sort of handle the decorations, though we will not be having a Christmas tree this year. I am totally surrounded in Christmas decorations, living right on what is known as the Magnificent Mile in Chicago. There's a gazillion foot tree right in our front "yard", covered in tiny multi colored lights. It's beautiful. The kids used to rush home from school on the day they lit it so they could watch it. I can sort of handle the decorations because, after awhile, they become wall paper. And, I can walk with blinders on if I try hard enough. Though once the snow comes, and the holidays become more real, I'll probably think differently about the decorations. But since it's sixty degrees these days, I can sort of handle them. It's the music. I simply cannot handle the music. Music is clearly very important to me, that's one thing I've learned from this journey. Music can make or break my day. It became very important to Lou and I as we navigated the brain tumor world. And, it was always a part of our lives ... we had "our song" (see post entitled "Our Song"), we had other music we loved, we enjoyed chorals and the symphony, Lou liked opera (and I at least listened, much like Lou would at least listen to some of my music, occasionally), showtunes, Frank Sinatra, anything romantic and danceable, and OF COURSE, Christmas music. Lou loved Christmas music. There would ALWAYS be a Christmas CD playing from the day after Thanksgiving until we just couldn't stand it anymore, at least until New Years day. We have many Christmas CDs. We even have a special Beres Family one that Drew made as a gift, a compilation of many of our favorites. Lou REALLY loved THAT CD. So you see, it's the music I can't handle. And it's everywhere. It's in every store now. On the radio. TV commercials. It's even playing on the busses. I can't escape it. It's when it catches me off guard that it's the hardest, of course. And sometimes, it just does catch me off guard, even though I should know better. It's the unpredictability of it,maybe. The decorations stay the same, but the music..you never know what you might get hit with and when. Like today. A huge swell of "Deck The Halls" greeted me as I walked into a mall I needed to make a return at. (Note, it was something I had purchased for my great niece's halloween costume so you KNOW I needed to get that return DONE). I love Deck The Halls. It's joyful and light. It's not sad at all. But, I guess that's why it WAS sad to me today, because it IS joyful and light. Yep, lost the mascara again. May as well forget that stuff for the month. I allowed myself a few moments of feeling bad, I wallowed in it actually. And then I ran on to the store I needed to get to. I was ok by then. Maybe taking care of a halloween return with Christmas carols playing snapped me out of it. At any rate, it's definitely the music. That much I know. Can somebody please stop the music? I'm not sure they make ear plugs good enough for the job.

Friday, November 24, 2006

Well Done, Please

He liked his pumpkin pie "well done". Meaning, it should not be mushy or too soft, and the top should have some darker spots. He loved pumpkin pie, as long as it was well done. He also loved turkey. The white meat. And he liked it DRY. He did NOT like it too moist. I often wondered if he REALLY liked his pumpkin pie and turkey well done, or if it was his way of dealing with my lack of culinary skills. I can make dried turkey. I can make well done pumpkin pies. And he was fine with that. Lou always said that I never made a meal he didn't eat. What a saint. But I digress. We haven't had years of Thanksgiving traditions that we follow. I'm kind of glad. It made today a bit easier. For many years, we went to Lou's mom's for Thanksgiving. When it got to the point that she was unable to do it, we went to his brothers. We only had it at our place a few times all those years. Then, we started going out. Lou felt very strongly that it was too much work, too much mess, that it was better to go out. Since he was our dishwasher, and I was the reluctant cook, going out was not a bad idea. Lou loved to go to the club we belong to. He loved the atmosphere and getting dressed up. The food was very good. But I always thought Thanksgiving should be at home. So I would make well done pumpkin pies and stuff a turkey breast just to have the smells of Thanksgiving and leftovers. And that's how we did Thanksgiving. Until Lou got sick. Then it was back home again. Last year, we did it up right. Brined the turkey, all the side dishes, pumpkin pies, china, crystal and candles. We had other family members join us. Somehow, I managed to get it right. It was lovely, and Drew even took over Lou's job as dishwasher. When the dinner was over, and we were all sitting around the table chatting, Lou thought we were at the club. I took that as a good sign. I think Lou liked that Thanksgiving at home. Especially since he did not have to do the dishes. This year, we had it here again. Did the whole bit again, just like last year. Only of course, it wasn't like last year. Oh, I think for some of us, it was. But not for me. I feel like I am just going through the motions with just about everything I do these days. Going through the motions gets you through. So, I got through Thanksgiving. And now, I have to get through December. That will be much harder. I'm looking forward to January.

Friday, November 17, 2006

Lou's Gift

It came to me in the wee hours of the morning. I'm tired of being sad you know. I'm tired of HEARING myself, can't imagine how OTHERS must feel. This blog is getting to be a drag, right, admit it. What to do. What would LOU do ? What would Lou want ME to do ? It came to me like a bolt of lightning. Lou has left me a tremendous gift. He left me a business to run, he left me two wonderful sons to enjoy, he left me with a cause, too, ie: brain tumor work. He left me with a roof over my head. After the memorial, a dear friend talked to me about what he will miss most about Lou. What he said was that Lou raised the bar, for all of us. That when he was around Lou, he was a better person. Because Lou expected that. Because Lou challenged you for that. Because you wanted to be on your toes around him. Because Lou was so extraordinary himself. He did challenge me. He pushed me to take on things I didn't want to sometimes. And he tried to help me become a more mature person since I was always just a bit sillier than he.......mature in a good way. I fear I am letting him down at the moment. I'm not taking this and becoming a better person. And I think I am supposed to. I think that is what I am supposed to do. I'm supposed to open this gift and live it. I'm supposed to raise the bar. MINE. Maybe that is it after all. I'm trying this idea on for size. I'm mulling it over. I'm carrying it throughout my day. It got me to yoga on time for once, that's a start.

Thursday, November 16, 2006

Don't Look Now

Suddenly, it's here. The holiday season, in all it's glory. It's here. It started showing itself back in October, when I stumbled upon it up on the 8th floor of the former Marshall Field's , now Macy's , but we don't call it that. It hit me in the gut that day and left me breathless. Little by little, it has spread, and now, it's everywhere. The stores are decorated, the holiday commercials are on, the catalogues have all landed in the mail, the outdoor lights are up. The only thing missing is the Salvation Army bell ringers, and they will start any day now. I thought maybe since it started so EARLY, that I might become immune to it, and that it wouldn't affect me. That somehow, I could just skate through the season with blinders on and soon it would be January. Not soon enough. No, not soon enough. I can't bear to walk down Michigan Avenue, where Lou and I walked last holiday season, arm in arm. I knew it would be our last time, I knew that. He so loved walking down Michigan Avenue, at any time of year, but especially during the holidays. He wasn't walking all that well last year, but we did manage that walk. I'm so glad we did. We had our traditional holiday dinner at his favorite place that he loves so much. I'm so glad we did. And we had presents. I had to buy and wrap mine, from him, and he thought he did it all. But that was fun. Giving myself gifts, from Lou, was fun. Because it made him happy. "Was it a good Christmas?", he'd say. Yes, it was. As sad as it was, it was a good Christmas. And I'm so glad we had that. But now, I find myself waiting for January just as anxiously as a child waits for Christmas. It can't come soon enough.

Wednesday, November 15, 2006

Who Knew ?

Lots of people DIDN'T know. And for some strange reason, they are finding out NOW. Plenty of people did not know about Lou. That he was sick. That he is no longer with us. I know that. I know that some people did not know. I didn't hear from folks I thought I would hear from. No matter. It's not like I was going to pick up the phone and say, "hey guess what?'. The problem is, we live in a large apartment building. Lots of people. Lots of aquaintances. And they don't all know. Lou was not out and about for the last few months. People assume he's still here, that's understandable. It's the questions in the elevator that get to me. We are all so polite and perfunctory. It starts with the usual, "how ARE you?". You try to guage the look in their eyes, the inflection....do they know, or not? You say you are , "oh, ok". Aren't we all, always, " ok"? And then it comes. "How's your husband". Remember, large building, not everyone knows everyone's name. You hesitate. You hope the elevator is going to reach it's destination, the doors will open, and everyone will file out before you need to answer. Instead, you are stuck. You look down at the floor, hem and haw, and back up. By then, they know. They know by the time your eyes reach theirs. There is no need to say it. They know. And then the elevator doors open, a quick hug and some sort of sympathetic thought transpires, and we are off on our separate ways. I'm left blunted by the well meaning question. I wonder how long this goes on. How many times must I go through this. It's like Lou learning over and over every day, that he was sick. Because it didn't stick. Now I know, I guess, in a small way, how he must have felt. Over and over, feeling it anew. Maybe I should start taking the steps.

Sunday, November 12, 2006

A Good Year. A Good Movie.

Movie night. I'm so glad I have girlfriends. A Good Year was the film of choice tonight. OK, so the critics panned it, who cares? Russell Crowe, in control in London, and out of control, in Provence, what's not to like ? Great soundtrack, I purchased it immediately from itunes when I got home (my new hobby, purchasing from itunes). Beautiful scenery. Albert Finney. Directed by Ridley Scott. Russell Crowe, oh yeah, I already mentioned him. And some french woman for you guys (not to mention the american woman, but the french one is of course, the love interest ). It's charming, light, and funny. There's only one problem with the movie. It's hopelessly romantic. By now, you know what that means, for me. Runny mascara. Kleenex. And that ache in my heart that doesn't go away. I HAD that. I HAD romance like that. I did. And it was good. It was really, really, good. It was a Good Life, for real.

Saturday, November 11, 2006

PS

Yes, I've added a counter. It didn't land up where I wanted it to on the page. That's because I had to go into HTML to add it. Yes, I started it at 2,000+. I started it at the number that was on the PROFILE, that shows how many people have viewed the profile, I figure that's as good of a start as any. Just because there is a counter now does NOT mean I don't want to hear from you! And yes, I AM techically inept and CANNOT seem to get any sort of spacing or paragraphs on here that would make it easier to read, particularly the long posts, like the most recent. I've even consulted my teenage son to no avail. Must be because I don't know HTML. I will never know HTML. Guess we will have to do without spaces. Sorry.

Friday, November 10, 2006

Our Song

Lou loved London. Everyone who knows (knew) Lou knows that he loved London. He visited London over twenty five times last he counted. He told me the first time he set foot in London he had a very strong feeling that he had been there before, that he belonged there. He did. Everything about London, particularly "back then" was so "Lou". Proper. Traditional. Historical. Masculine (as opposed to Paris, which Lou felt was definitely feminine). He loved the theater, the parks, the royalty, the museums, the restaurants, the cabs, the shopping, the Thames, Big Ben, and on and on. He also loved sharing London with us. He took Drew there for a special trip. He took us all there for a great family trip. And of course, he took me there, a few times. The very first time he took me to London, we saw the play CATS. I think it was the original, first run of CATS. We didn't know much about it when we went, it hadn't been out that long. It was wonderful. It was magical to see it in London. To see it in London, with Lou, was magical. There is a very special song in CATS, a hauntingly beautiful song. It is a solo, sung in the dark, with a single spotlight. I think it comes at the end. It's a very melancholy, sad song, and it spoke to Lou. Something in that song got to him. As the last note drifted into silence, I turned to Lou, and found he was in tears. He was so moved by that song. It became "our song". Lou would request it, and ask me to dance, no matter where we might be. We danced to that song at black tie affairs, at piano bars in hotel lobbies, at restaurants throughout the world. If there was a pianist or band, Lou would request it. And we would dance, no matter if we were the only people dancing. No matter if there wasn't a dance floor. We danced. We danced to our song. And the name of it is "MEMORY". The song that affected Lou so deeply, so long ago, long before the brain tumor, was titled "Memory". I think about this alot. I think about the fact that Lou lost the ability to retain new information from the brain tumor. That he lost his immediate memory. And I think about this song. How is it that THIS would be the song that became "ours". Why not something else we liked, why not Stevie Wonder's "You Are The Sunshine Of My Life", which was the hit of the day and certainly danceable. Why MEMORY? I think of Lou, in the dark of the theater, with tears streaming down his cheeks. Did he know ? Did he know, in his heart, so long ago, that something would happen to him like this? Is that why he was affected so deeply by this song? These questions haunt me, like the song itself. Dancing with Lou, to MEMORY, a memory, now............. LYRICS TO "MEMORY", from CATS ......... Daylight See the dew on the sunflower And a rose that is fading Roses whither away Like the sunflower I yearn to turn my face to the dawn I am waiting for the day . . . Midnight Not a sound from the pavement Has the moon lost her memory? She is smiling alone In the lamplight The withered leaves collect at my feet And the wind begins to moan Memory All alone in the moonlight I can smile at the old days I was beautiful then I remember the time I knew what happiness was Let the memory live again Every streetlamp Seems to beat a fatalistic warning Someone mutters And the streetlamp gutters And soon it will be morning Daylight I must wait for the sunrise I must think of a new life And I musn't give in When the dawn comes Tonight will be a memory too And a new day will begin Burnt out ends of smoky days The stale cold smell of morning The streetlamp dies, another night is over Another day is dawning Touch me It's so easy to leave me All alone with the memory Of my days in the sun If you touch me You'll understand what happiness is Look A new day has begun

Wednesday, November 08, 2006

Thanks

Remember when Sally Fields won the Oscar and gushed "You LIKE me, you really LIKE me". I sort of feel that way ... someone IS reading this, WOW ! Just wanted to say thanks for the comments of late. Guess my prodding helped, huh? It helps. It helps to know someone is out there. Someone is reading this. Someone else cares. Thank you. I really don't like the way these things are set up, I can't just click on the comment and respond to you, you know. Maybe I can and I just haven't figured it out. That's more like it. Anyway,if you do not hear from me, it means nothing. Just know that I appreciate that you visit this space. As long as you are reading, I'll keep writing. On another note, I think poor Lou is probably quite glad he was NOT here for this day after election day.

Thursday, November 02, 2006

Facing The Music

I went to the symphony last night. If you are not from Chicago, you might not know that we have a world class symphony, and a gorgeous symphony center. I have always loved it, though have not attended near as much as I would like. It was a lovely evening with a dear friend. We have purchased a package and will attend three more over the course of the next few months. I certainly do not know all that much about classical music , except that I do really enjoy it. While Lou was sick, we listened to alot of classical music. We had our "morning get up and go" music, afternoon "light/joyful" music, and softer/mellow music for evening/sleepytime. It helped us get through the days. It helped us move from one activity to the next. It is always amazing to me how music can create a mood, and how it can "speak" to you. How it can stir your soul. How it can shake you to the core. How it can bring you to tears. How it can bring back memories. Like it did last night. The last time I went to the symphony was with Lou, in January of 2005. It was after he had completed his 6 weeks of daily radiation. It was a weekday matinee. I think it started at 1:30 or so. In those days, we were still having great difficulty getting Lou squared away to get out the door anytime before the afternoon. It could easily take a few hours to get him out of his depression and state of confusion, only to have to start over sometimes. I thought we could make a 1:30 start time. We couldn't. We didn't. I really wanted to go. I thought it would be good for Lou, and I had already purchased the tickets. As 1:30 came and went, I grew a bit frustrated. I was going to give up. Instead, I called the symphony and asked if we could come late. They said we could go in at intermission. That seemed fine with me, Lou would NOT know he had missed the first half as it were. We were finally able to get out the door and down to symphony center. We got in our seats just as intermission ended. The music was magical. Lou soaked it in. It was over much too quickly, unfortunately. We were one of the last to leave, which worked better for us anyway. I will probably never, as long as I live, forget what Lou said as we walked out the doors. He looked at me, as we went through the doors into the cold winter air, and said, "where were we just now?'. We were no more then ten minutes past the end of the performance, if that. We were walking out of this beautiful, grand building. Surely, he must have known where we had just been, how could he NOT ? He didn't. I said, "we are leaving the symphony". He said, " I don't remember that." We walked arm in arm and I told him it didn't matter. I told him it was beautiful, he had enjoyed it, we had been there, together, and that's what mattered. I am quite sure a few tears froze on my cheeks that day. That is when I knew this was serious. That is when I knew we would never, ever get Lou back, no matter how successful a particular treatment might be (which of course, they weren't, nor ever could be). That is when we truly embarked on the creation of the "alter" life for Lou. Manufacturing a life that worked, that made him feel good. Ignoring the obvious. Grasping that which didn't truly exist, except maybe in his mind. Last night, it all came back to me as I sat there at the symphony, with the music swelling around me. What must it have been like to have been Lou all those months? How could this have happened to Lou, of all people ? How could we have heard the music, and NOT have heard it, all at the same time? Just thinking about it pains me so deeply, right this very instant, it pains me. The only way out is knowing we did our best. The only way out is knowing he was happy. He was. Until the very end, he was. The only way out is having no regrets. And I have none. Thank heavens, I have none. The only way out is to face the music. To turn up the volume and let it wash over you. Music is amazing.

Wednesday, November 01, 2006

Let There Be Light

A month ago, I truly thought there was NO WAY that Damon could rally to get four college applications out the door by November 1, no way. A month ago, we were operating in a deep fog. A month ago, there was more anger and sadness. A month ago, life seemed overwhelming. Last night, as Damon hit the "submit" button for his applications, I was overcome with pride, tinged with a bit of sadness too. Pride, in that he was able to prevail in this difficult time. Pride ,in all he has accomplished these last few years, inspite of the deep, dark, burdens he has carried. Pride that he is my son. Sad that he has to check "deceased" for his dad. How I hate that word, too. As much as I hate "widow". Sad ,that Lou is not here to share in these accomplishments. He, too, would be so proud of Damon. Yet, I know he is. And, he was smiling as Damon hit "submit", I know he was, I felt it. It's November. It's blustery, darker, and everything November is supposed to be. But I see a sliver of light beginning to enter our home. It is hopeful. Life does go on, doesn't it? Damon WILL go to college. And, we WILL get through this. I'm ever so grateful for that sliver of light.