Friday, December 25, 2009

I believe in magic

posted by Mary Lello, Friday, December 25, 2009, 7:00 AM

Christmas morning and we are in Glenwood Springs with Stacie and the Grays. It's been a good trip so far and Jim is doing very well considering the major changes in his routine.

He's shed a lot of tears. He cried yesterday as he got ready for his morning nap and I got ready to go for a run up into a canyon that he and I always loved to run up. I tell him it's just as hard for me to be going without him as it is for him not being able to come. But I carry him with me on every single run. Yesterday morning I could see him up ahead of me, still running straight up the steep pitches when I have to stop and walk due to the altitude. I never understood how he could do that but he was always so strong, so beautiful in his stride and broad smile.

I walked into our bedroom yesterday looking for JIm and he was sitting on the bed crying. This is NOT easy. Even though it is so wonderful to be here and being with his sisters is pure joy for him it just sucks that he can't converse with everyone. As you all know, Jim always has a lot to say.

But the good news is he keeps trying. Even when it's just jibberish that comes out he's TRYING and as long as he keeps doing this the more his brain will wake up and say "OK, lets make these connections happen then".

I believe it WILL happen. I believe in magic.

December 25 and we are here to celebrate a birthday. I'm gazing up into snow covered, juniper laced ridges that have always had the ability to take my heart soaring. I'm beginning to ask for help again from the spirit world verses curse them. I'm asking the Creator to help us understand what this is about, though I don't expect an answer will come real soon. And I'm going to make sure that this Christmas Jim laughs more, cries when he must, and make this the best damn Christmas we've ever had.

I believe. I believe in Santa, and spirits and seeing Bald Eagles as being a good omen. I believe in magic.

Have a joyous day today, and believe in the magic that is in the spirit of today,


Tuesday, December 15, 2009


posted by Mary Lello, Tuesday, December 15, 2009, 4:00 AM

I get up early. The wee hours of the morning is MY time. I get the fire going in the stove, get the coffee on and then I'm able to sit and read or write without always listening, without waiting to hear the "Mary!" that happens all throughout my day. I sit in our picture windows that look out over the bay and watch the morning unfold.

The last couple mornings have been astoundingly beautiful. As the sun pulls itself up out of the Atlantic the morning bleeds into the sky with a layering of colors. The horizon layer has been a blood orange red that smudges into a ripened peach and then topped off with the palest yellow. Above all this vibrant color is a sky that is closer to a light purple then blue and directly in my line of vision sits the waning moon. For 3 days now I've watched this moon grow thinner and thinner. Yesterday it was just a sliver, like a raccoons whisker, that reflects the rising sun with a golden hue turning silver as the sun gets higher.

All the trees that I look through to this incredilbe display appear as a wood cut, each branch deeply silhouetted, black lines etched into the scene.

And then the birds begin to move across the sky. Families of crows on their morning commute from their roost to their different territories. I watch for my 7, who come in over the bay and head straight for the trees around our house. They sit patiently there until the sky loses all it's cocktail layers and the white light of the day takes over. If I take too long in going out with their breakfast then one crow will fly into the big White Pine directly in my line of vision and just sit there being oh-so-obvious! This is the same Pine that held their nest last summer. The same Pine I stared into after returning from the longest day of my life at the ER room after Jim fell down the stairs. The same crows who had me sit up and notice their nest and gave me the energy to move again.

I have a thing for these crows.

They are teaching me so much. For instance I've learned that crows do NOT eat just anything. They don't like peas or cranberries in cranberry sauce (I found one gooey cranberry on my car windshield - a little "see these? Don't like them OK?!), but they loved the turkey skin and other yucky parts that we humans didn't want to eat. They like dog food, Saltines and peanuts in the shell. They don't like my looking at them too long. Though one of the younger ones tolerates my looking up and talking to him/her far longer then the timid adults who fly screeching to a distant tree because I acknowledged where they had perched.

They talk to each other, they announce that I'm out there, announce that breakfast is ON! With different voices then the typical "caw caw" they seem to discuss many things. Last spring the young fledgling would "coo" to me when I walked out. I think his adults may have told him to "cut that out!" since I haven't heard this conversation in awhile now.

And then they are a lesson in patience. They wait so long after I've put the food down and return to the house, making sure there are no lurking neighborhood cats or other dangers to a Crow before swooping in and landing on my lawn to grab a morsel of food and fly onto a neighbors roof to eat.

They make me smile, every morning. Which some mornings is greatly needed and I'm very grateful to these birds for helping to change my perspective on the day at times.

Jim is looking real good these days. I posted a picture that our friend, Ted Tinson, took that captured that look. And his awareness, his cognition, is much sharper now. Jim is truly there in social gatherings understanding all that is being said...but he can't talk, he can't really participate in these conversations. This is such a harsh and cruel thing for him. He will get easily stressed if he is going to be with someone outside his comfort circle because the act of engaging with that person is so difficult. He wants me to be there with him or he'd prefer to not go. Not always easy for me when I feel so starved for alone time. He's an extreme extrovert, I am an introvert. But through all this our natural tendencies are being forced to alter - I must keep the conversations going, I must be the social one and Jim must sit quietly beside me. Like my crows, Jim and I have developed a language all our own and he needs me there to help others understand.

My Crows are arriving. I hear them announcing their presence in the 'hood. A new day is here and it's comforting to know that I begin it, at least, with a smile.

Loving you all back,


Wednesday, December 9, 2009


posted by Mary Lello, Wednesday, December 9, 2009, 4:45 AM

Christmas has always been my favorite holiday. It will forever be tainted now, of course. December 25, 08, Jim is acting very strangely and pictures of me from that day show a pretty strained 'smile'. December 26, 08 - seizures at 5:00 a.m. I didn't really know what they were or what they meant but I shall forever be able to recognize a seizure now. Dec. 27, 08, Blue Hill ER and a CAT that shows "something" on Jim's brain. Dec. 29, 08, Jim's surgery at MMC and the discovery of a whole new vocabulary and the start of an entirely different life.

And as we approach Christmas '09 Jim is still here . He's a fighter. Donna and Stacie had talked about trying to gather somewhere and share Christmas together this year. This discussion started back in September and I didn't entertain it too much as the cost of flying financially, physically and mentally felt over-the-top impossible for me. Jim, however, has wanted to get back on a plane since last January. I'm not kidding!

I would engage in the discussion but I really had it on the back burner ... far back! Then in Oct. an angel appeared and gave me an envelope and with tears in her eyes said "please just except this gift. Please just stash it away and use it for when you and Jim can go do something fun again. Please!" And with tears in my eyes, I accepted. And I swear if she had not said to use it for something fun it would have gone into paying bills ... but an ah-ha moment occurred and I thought "plane ticket?".

First over-the-top impossibility just got solved. OK then, where should we go? California? Colorado? Hawaii? (yes, this had opened as a possibility at the same time but it just wasn’t going to happen for December). Donna and Mark were saying to Stacie and I that we should all just gather at their house in Glenwood Springs, CO. Tickets to Colorado were now do-able, traveling there however felt incredibly challenging. The bottom line was, I would NOT travel alone with Jim. He’s stronger and more independent now, but I could not envision trying to navigate an airport, baggage, tickets, security and all of this with Jim by myself.

First step was to see if our friends, the Jalberts, in Evergreen could let us land there for a night as they live only 45 minutes outside of Denver. Well, these dear friends could do better then that. Greg is returning to Maine the week before we leave to visit with his daughter in Portland and then he will fly back out to CO with Jim and I. Donna and Stacie drew straws to figure out who would fly back with us to Maine at the end of the holiday. Donna got lucky (I hope this is how it feels?!) and she will help me with Jim on the return flight and then spend the New Year weekend (which also includes her brothers birthday) with us in Maine before she flies back home to Colorado.

HOLY FLIGHT PLANS BATMAN!!! We're going. We are heading to the lights that the Jalberts have strung all over their mountain home for us, to the "real" tree that Donna and Mark will get this year for the family gathering, to the mountains that make my heart soar whenever I get to gaze upon that big sky and those 14,000 foot snow capped peaks and Jim is getting out of Dodge - something he hasn't done in over a year and he has been itching to GO!

This feels so healing for both of us.

One of the things that attracted me to Jim from the very first time I met him was his thirst for life. His ability to grab life by it's tail and just hang on for the ride. His incredible playfulness and big kid attitude to living. All of you on this site know this Jim too and this may be what attracted you to him as well. I keep telling Jim that even now, with life so different and all it's extreme challenges (yes, this is a nice way of putting it) we still need to grab that tail and hang on for the ride! We need to live life to it's fullest - especially now! And this trip to the mountains feels like the first step to reclaiming this part that we both have lost over this past year.

We are still waiting to hear from Dana Farber in scheduling an MRI down there with them. This MRI will be the first step in determining if that tumor is changing and if we can even be considered for the XL184 trial. We're hoping the MRI can be scheduled for the week we get back from CO but who knows.

I shall keep you all posted regarding this.

Loving you all back,


Thursday, December 3, 2009

Who are we, really?

posted by Mary Lello, Thursday, December 3, 2009, 5:00 AM

Recently I've been doing some work around my own healing with a wonderful friend who is a Shaman. I discovered that I seem to be finding my "freedom" by leaving my body and soaring around while sleeping. For many of you this may sound a) astounding, b) highly unlikely or c) yup, that's Mary.

Regardless of your visceral reaction to this concept mine was "cool". From the time I can remember I use to leave my body. As a little girl I knew at a very young age that this body was simply a house, that the "me" inside was different from the "me" that the rest of the world could see. I would sit and stare at my hands and slowly move one finger, amazed at the fact that "I" could make that little finger move like that. Or I would think about my name Mary Lello and just laugh at the fact that this is what this house is called and "I" will respond to it. And many times when I would do this meditation I would enter a trance and then POOF I was in the corner of my bedroom looking down on my body that was still sitting there staring at my little finger. This never scared me but I knew it probably wasn't normal. At some point I would realize I was suddenly back in my shell because I was staring at that little finger again.

Somehow I always knew I was much bigger then this body, that there was a Spirit housed inside this skin and bones and that due to the parents I have I look the way I do now.

So who are we really? I keep saying how Jim is "trapped inside" but is he? His brain is compromised but is that brain Jim? I guess I'm saying I don't believe his spirit is trapped inside because I seem to understand first hand how we can easily leave this shell and float around. And I see that wonderful spirit of his in his eyes and in that crooked, odd smile he has now and feel it in the incredible love that emanates from his being.

I have a friend who lost the love of her life, John, 5 years ago to cancer. The last 2 weeks of his life when there was nothing anyone could do for him she told me how she would sleep on a pad beside him at night. One early morning she woke up because she had heard him call her name and there he was, a face in the end of the arm chair that she was looking at. As weird as that image is she suddenly realized that John was all around her and that when he died and leaves that body he would still be all around her. And she still feels him there with her, 5 years later. She feels him in the wind, and can see his face in the stars. How wonderful is that?

Who are we really? Am I this aging woman who freaks because she's starting to get jowls or that "estrogen pot" that appears around 50 years of age? This shell, showing signs of gravity and aging. Is THIS "me"? Or am I the ageless spirit inside that can't believe this body is going through all these changes now because I really don't feel older, just wiser.

I'm having a hard time talking philosophy all by myself here and I'm probably going to start really rambling, and maybe drooling too, but these are the thoughts running around in my head on this incredibly dark and storming morning.

My friend, Betsy, died over the weekend. She has been released from her shell. She is in the wind now, in the rain that beats on my window this morning, in my thoughts and my memories. She is and will always be a part of who I am because she touched my life for a few short years.

"Heard it in the wind last night, it sounded like applause ..."

Joni Mitchell, For the Roses

Loving you all back,