To Love What Is

posted by Mary Lello, Tuesday, March 30, 2010, 5:00 AM

The title is not mine, unfortunately. It is the title of the newest book written by the best selling author, and our friend, Alix Kates-Shulman. I seem to have ADD around reading these days but I have two books I’ve read over the last few months that I was not able to put down. To Love What Is by Alix was one of them (Broken, by Lisa Jones, is the other. Perhaps for another blog). This book is the experience of Alix caring for her husband who fell from their nine-foot sleeping loft in their summer cabin on Long Island, Maine. Scott suffered a Traumatic Brain Injury (TBI) from this fall six years ago which accelerated dementia as well as wiped out his short term memory. Alix confessed to me in an email that after six years she's a little “weary”. Ya’ think?!

I find myself drawing on this book title a lot these days …. To Love What Is. For those of us who have taken the vow “for better or for worse”, how many of us actually think about this? For better, is easy and what we all plan on, it’s the ‘for worse’ part that you just don’t even consider!

I admit to looking at this man, whom I’ve spent the last 30 years with, early in his disease and wondered who this new character was that had shown up to share my life. And do I want to share it with HIM? This was during moments of weakness because ultimately I never forgot Jim Daniels was in there. And, as you all saw on Saturday night, he’s more there now then he’s been for over a year. But still, there is brain damage, there are big gaps and burps that demand extreme patience and pulls out the teacher in me as we navigate speech or the sequence of some tasks.

To Love What Is. Not a question, a statement. One I say to myself frequently now, because, yes, I do. Dancing with Jim on Saturday night I felt nothing but love for him. Loving what is there now.

It's so difficult not to ask for more. When Jim wakes in the morning in tears saying "it's so hard" because he has opened his eyes to another day of a broken body and an inability to speak. We talk about how slow the healing is right now but remind ourselves that he is healing and to try and rejoice in this.

To love what is - maybe I can't really apply this to our life presently as it feels dishonest - but I can look at Jim and say yes ... I do.

Loving you all back,

Mary

She called it a "Love Fest"

posted by Mary Lello, Monday, March 29, 2010, 5:00 AM

Nance Trueworthy pulled off some magic again. She told me she was going to call it a "love fest", and that is indeed what it was.

I've been trying to find the words to express what Saturday night was for those who weren't there and there just aren't any. Two hundred and forty five people came to gather in support of this one guy whose life has taken a horrible detour. His community gathered, sang and danced until the place was shut down and offered support with their love and incredible generosity along with their gifts .... the silent auction was incredible!

There is so much talent in this community! From performers to artists of paint, stones and camera lenses to merchants of wine, bicycles and gourmet deserts and even those who work in the hotel business offered a get away for one night. Pulling all these talents together and offered as additional fund raising, offered for the entertainment for all of us to enjoy is, simply, remarkable. Not only is this community talented but they are loving - and they aren't afraid to show it. It just doesn't get much more wonderful then that.

When stripped of your ability to perform in life at the most basic level I have to say it is this love that you are left with. When all the doing of your life is pulled away and you can no longer "do", it is love that you end up relaxing into and realize it's all that is truly important anyway.

And it was this love that just filled that room on Saturday night. The love of gathering and dancing shone on everyones face.

Jim had a BLAST! He danced until I had to tell him to sit down and rest his legs. When anyone looked at me and said "oh no, I don't dance" .. I said "dance with Jim!" because it is pure joy of the music and the feeling of movement with him. He doesn't care what you look like when you dance. He doesn't care what HE looks like when he dances (now) and just the fun of moving is so intense and so infectious that EVERYONE was dancing!

Yup, great band too!

Of course Jim and I were nervous as we headed over to the party. King for a day after all is not the most comfortable spot to be in. But at the end of the night, when I could see that look on Jim's face that told me he was more then exhausted and I forced him to head for the door, Jim and I got into the car and just looked at each other and said "wow".

Maybe that's the best word for this - wow.

You all are so amazing. You lifted this man up and carried him so far Saturday night. I really don't know how to express my gratitude to all of you for this. They say joy, laughter and love can turn cancer around. If this is true, then each of you have done so much for healing this man.

We do love you all so much!

Thank you!

Mary

"And You?"

posted by Mary Lello, Saturday, March 20, 2010, 5:30 AM

Next weekend is the fundraiser and we’re very excited about it. I’m amazed at the energy and organizational skills of Nance. She’s doing a great job.

Many, or most of you, have not seen Jim for an entire year. If you are reading this then I suspect you have kept up with the goings on through this site so have somewhat of a clue. Still I need to offer some understandings as to what to expect when you see Jim.

First off, you will SEE Jim. He is coming back more and more. His sense of humor is coming back and you can see Jim Daniels in those gorgeous blue eyes again. When he’s tired – which I’m sure he will be by the end of this night – those eyes go a little vacant and look more like a deer in the headlights but he’s still in there.

He’s disabled with his right side but getting stronger every day. He’ll be dancing that night, a beautiful but odd little shuffle and swinging of his cane or twirling whomever he’s dancing with. And pure joy shines on his face when he dances.

He has a dozen words that he can say and he uses these words a lot, “and you?, “yes, yes, yes,”, “that’s alright”, “thank you”, “shit, shit, shit”.

“Thank you” gets used for a lot of different things – he says it when he means “Hi” or “Bye” or “please”. He’ll probably be saying it as we walk into the room “yes, yes, yes, thank you, thank you, thank you” … which always has me feeling like a celebrity even when the room is not erupting into standing ovations. This is all what the speech therapists call “preservative language”, words that he has retained and can say. It’s interesting how the phrases of this preservative speak have changed with time. It use to be “how long….” Which sometimes didn’t make much sense but it was always entertaining to watch people try to figure out what “how long” meant to them. He hasn’t used this one for months now. And “shit,shit,shit” gets used in extreme frustration. Again, interesting how swear words are retained across the board with any brain trauma. We can all be thankful it’s not me in this condition as I have favorite, but far more offensive, expletive.

You may want to say your name to Jim when you come up and say hello. He will remember you but he probably won’t remember your name so offering this right away to him will take away the stress he may feel in trying to remember a name.

And be prepared to do more of the talking and not asking too many questions. Questions, after all, require an answer … and Jim can’t do this right now.

He will be thrilled to see each and every one of you. This is a man who loves openly and deeply and you are coming because you have shared this love of each other in this life.

For anyone who is coming who does not know Jim but is coming because you know someone else at this gathering then all I can say is, you will be glad you got to meet Jim Daniels. Even in this incredibly compromised state you will feel the wonderful energy of this man and be glad that you now know him.

Loving you all back,

Mary

Looking Up

posted by Mary Lello, Thursday, March 11, 2010, 7:00 AM

I'm enjoying looking up lately. My crows have taught me to do this. When I step out into the yard I will hear their conversations and, wrongfully I'm sure, assume it's about me. So I look up to acknowledge them and find who is braying at me, to watch them fly over my head and land in our Oak tree and pretend they don't see me.

One Sunday morning I was on my way up our hill to get the New York Times from the Town Hall (we call it that as so many of this extended neighborhood gather at the Town Landing Market on Sunday mornings with coffee and papers in hand). I heard a crow and stopped to look up - there directly over my head was a HUGE bird with a squirrel in it's talons. Hawk? Too big. No red tail. Immature Bald Eagle? Quite possibly ... yes! The crows gathered in this tree in force and began their harassment of this predatory bird. The Eagle listened to the abuse for only a few minutes before flying off with it's prize and the entire family of crows in pursuit. Nice start to my morning though maybe not for this juvenile Eagle.

The last couple days have been so warm here that Jim and I have sat out on the deck with our backs to the big Oak that towers over our house. WIth no leaves on the tree yet we have a wonderful, sunny, out of the wind spot to sit and look up. There is a Hairy Woodpecker who is banging out his love song to anyone who will listen ... as far as I can tell it's Jim and I. So I look up, and can see this little guy swooping from one dead branch to another. On the smaller branch he taps out a "rat-a-tat-tat" song. Then he swoops to a larger dead branch and we hear a bass "drrrruuuummm". Although Jim can't locate and see the bird when he heard this different beat he looked at me and said "wow!".

I look up, to see the Maple buds swelling and turning red, to watch the Chickadees and the Purple Finches starting to pair off, to see a little Nuthatch disappear into the hole of a tree branch only to reappear and sit on the edge of his 'porch' before flying off somewhere.

I am looking up, literally and figuratively. This is the best place for us to look right now.

Loving you all right back,

Mary

Spring?

posted by Mary Lello, Sunday, March 7, 2010, 5:15 AM

The last 3 mornings I have gotten up at my usual time - dark - and noted that the Rhododendron leaves were not curled up pencil thin but unfolded and open. I think "hmm, temperatures are in the high 30's or low 40's then". Yesterday I saw the first tiny green shoots of my crocuses and a little peek-a-boo of a Daffodil pushing it's way through the soil towards the light. It is just the first week in March. Can it be that Spring is here, so early? Or must we leave the snow shovels by the door, staying prepared for one last snow storm that everyone is convinced will still come. In like a lamb this month, out like a lion then?

And with this new life budding Jim has increased energy. Yesterday "PT Dave" (as we call him) came over to the house. He has done this for several Saturdays in a row, coming here out of uniform and working with Jim. Yesterday Jim was on the stationary bike for 20 minutes and then outside walking for an hour. The man is getting stronger! I was telling these two that the Not Dead Yet Ride has been moved several miles inland this year, probably to accommodate the surge in attendees and traffic. But inland means more hills - big hills! As we talked more about whether JIm could do this ride or not in September Jim made it evident that he did not want to be on a tandem this year but wants to ride his own bike. I turned that one over to Dave, who gently but honestly told Jim that he would never say never but Jim has a long way to go yet before he'll be riding solo again.

This set off a bit of an emotional turmoil. As Jim improves he becomes more aware of all that he has lost and the emotions surge. We try very hard to look at all that we have gained. We try to look at where we are now and not where we want to be. We try desperately to make lemonade out of this pile of crap but every day it takes tremendous energy to not want more from life.

And personally I want to hear Jim talk to me again before I want him solo on his bike. I'd be delighted if I had to ask him not to interrupt me when I have the floor, to hear his incredible quick wit and hear all his thoughts. And I'd be happy to have him out there trail running with me before he's on his bike. Not sure I get to set my priorities but that's my order.

I'm amazed at how patient Jim is most of the time. And how loving he continues to be. His love is just naked and raw these days. He hugs freely, kisses men easily, takes my hand and kisses it several times - I feel like a Queen! He was always a man who wore his heart on his sleeve and let people see his vulnerabilities but now he just emanates love. It's quite wonderful to be in his circle.

Spring. And all it's cliches of rebirth, renewed hope, opening to all the new possibilities. And we are living all this. Everyday, we push our heads through the turf with renewed hope. We unfold our tight fists and open to the warmth of possibilities. We turn to the strengthening sun and pray that this cancer not win this time.

Not this time. Not this day.

Loving you all back,

Mary

GOOD NEWS TO SHARE!

posted by Mary Lello, Tuesday, March 2, 2010, 9:00 AM

We finally heard back from Dana Farber. Dr. Weisburg just called me this morning and there is GOOD NEWS! Dr. Wen says that this last scan shows the tumor looking BETTER - not worse. He says it's very stable and there is a section of it that looks "better". I asked Dr. Weisburg if "better" means "smaller" to which she responded "YES!"

SO, one more thing to celebrate at the dinner where we all gather in March! This is very good news indeed. And a very short post as the sun is out, the day is fairly warm (for Maine this time of year) and I have a little dog who wants to go outside and play with me. So off we go for a trail run, to include some skipping and few little leaps of joy just for the fun of it!

Loving you all back,

Mary

"Go Ahead and Scream"

posted by Mary Lello, Sunday, February 21, 2010, 4:30 AM

I admit to losing it sometimes. To losing all my patience, my cool, my acceptance. I admit to wanting to scream and throw things ... sometimes at Jim. And I admit to feeling some anger when in the rare moments that I do act less then Saintly towards Jim a friend will look at me with furrowed brow and I want to say "yeah? Well YOU try living this life 24/7, just for a week! I dare you!" ... but of course I don't.

Yesterday was one of those days. There were 2 different directions to go; Jim wanting to attend a Buddhist function and I wanting us to be at a family sheebang. But I knew the importance of the Buddhist gathering for Jim so I launched into trying to make all the different ends tie together and then threw up my hands and realized I just needed to drop the entire ball. And I did. Taking 2 1/2 glorious hours for myself where I reclined on the couch with my book even though the house is trashed, the recycling needed to be taken, and a woodpile sits waiting to be moved into the shed. The house was empty and I just needed to enjoy that.

Sometimes the fatigue takes me headfirst into a brick wall and I need more then 2 hours to regroup. After I picked Jim up at his gathering he said he wanted to go out to Gorham to see all my family who was gathered, and partying, there. So we did. But I was still feeling a bit frazzled so when Jim just stood outside the car staring and saying "hi" rather then moving to the bomb fire I called him "Mr. Slow Molasses!", much to my sisters horror. And when he decided to move inside and kept stopping for no apparent reason to just stand there in the mud I felt my patience drain from me.

So the final straw was around 7:00 p.m. when Jim said he was ready to go home. Great! Me too! And then he asked me "and you?" not just once, but THREE TIMES! I took his shoulders, looked into his eyes and said "YES JIM, I'M READY TO GO! I TOLD YOU THIS!" And my family gave a gasp. All but my mother, she just smiled. OH, and then he had to say good-bye to everyone at least five times making just getting to the door an event similar to the slow release of the disc-thing in the Olympic Curling competition. My mother looked at me and said "go ahead and scream", instead I stomped my feet like a skunk giving it's final warning before releasing it's well-known and dreaded bomb.

My mother understands. More then anyone else, I know she understands. She raised 5 children under the watchful eye of a small town where our father was a God, also known as the pastor of the Congregational Church. The First Lady of the US has nothing on my mothers job during these years to remain calm and serene even when under fire. She gave birth to the last child when she was 40 years old and now faced another 18 years of taking care of one more small being while the other 4 fledged the nest. And then when she was in her fifties my father retired and they moved out from under the intense gaze of that small community and into the house they had built when first married overlooking the open ocean and wide open fields. I believe my mother looked forward to having a few dinners out in the larger town of Portland and maybe even doing some traveling with her husband. But my dad had emphysema and soon after entering retirement my mother was again saddled with caring for someone 24/7 verses being able to take flight and soar free.

When my mother looks at me and says "go ahead and scream" I KNOW she understands exactly how I'm feeling. When she tells me not to worry about feeling sorry for myself or that she knows what it's like to think the world goes on having all kinds of fun without us, I KNOW she gets it!

And today I can feel my patience is back though maybe not my energy. And I can feel my mother's awareness and understanding of what each day asks of me and today this is more then enough.

Loving you all,

Mary