It's all in the details

6/17

Had to laugh. Today my father was doing a 24 hour urine collection. It is an important test because it will let us know how his kidneys are doing, if he is making the progress he needs to make to move away from dialysis. Today being Sunday, he carted a large blue cooler to family volleyball at the ditch, desert at Aunt Barbara's house, and to dinner at Paula and Bill's. My cousin Amy inquired about the amount of urine he is producing and immediately started converting the 1200 mL to cups (her calculations were surely off in that she came up with approximately 24 cups. I think she mistook mL for teaspoons but am not quite sure). Her 9 year old daughter, always observant and listening in, quietly inquired if he was peeing directly into the cooler. Her misunderstanding was immediately corrected and shared around as a humorous anecdote. A few laughs but the greatest laughter of all came when Jeremy, my 26 year old step-brother, admitted that he too thought my dad was peeing directly into the cooler (rather than the containers iced within). I cracked up, thinking about how surely Jeremy was determined not to use that cooler for anything else ever again and was surprising comfortable sharing the backseat with the cooler with sloshing urine thought to be contained within all day long. Sometimes its the details that help us survive these tough times...

Staying Still

I remember one trip I took to New York City where I spent most of my time in one place. My brother had opened The Putting Lot, a miniature golf course in Brooklyn. Once opened, someone had to be there all the time to greet visitors. I took a few shifts, wanting to be part of the experience. My first thought as the hours passed and only a few people came was that owning a business could be very boring. There would be so many times that you have to just be there, available in the event that someone may want to access what you have to offer. Of course there would be busy times but so much of your life would be sitting in one place while the world moves about. However, the longer I stayed there and the more people I met I came to the realization that you see a whole different side of the world when you sit in one place and see what comes to you. You are a witness. As a frequently traveler and visitor to New York City I seek out experiences. I move about the city, navigating with maps, looking for the things that strike me as quintessentially New York. However, staying put at a “destination” for others I was able to see a great diversity of the city: neighborhood kids, hipsters, tourists, curious neighbors, families looking for something to entertain the kids, supporters, and friends of those involved. It may have been my most authentic of all New York experiences, put in a place where the city came to me.

This memory came to me last night at my step-sister Sarah’s graduation party. I took up a spot in the corner of the dining room. It was nestled against the wall and not easy to move in and out of and so I stayed there as the night progressed, about five hours in all. My tablemates changed all night long, probably 25 in all. It felt good to sit in one space and have people come to me. A great diversity of people, from many times in my life, came to sit by my side. I was struck by the wealth of connections I have due to my father. He has connected me to the world that I might otherwise turn away from and for this I am thankful. I feel truly blessed. One man talked about his friends who tried to turn him into the DEA when he was dealing coke. Another man talked about his college sorority from at least 40 years ago as if it was the most significant set of relationships he could ever have. Another shared his work lobbying in Santa Fe after he updated me on his daughter’s adventures and son’s film making. A group of women talked about the best new restaurants in town. Some that sat by my side were family and we caught up on the week’s events since I saw them just days ago. One woman talked about visiting the wardrobe of Walter White on Breaking Bad. Four of the men who have been around the longest in my life sat, passing a joint, breaking into lyrics, and talking about what it is like to grow old. A group of teenagers in short shorts waved as they passed through (could they really be the same kids that were just little kids last time I looked?). Another woman talked about her job in the neurological ICU and how to help families deal with death. A dear friend who I haven’t seen in years came in. She is visiting to help move her mother into a home and had been in caretaking mode for 24/7 for five days straight, sick to her stomach with stress and sadness but able to still tell a good story, give a glimmer of hope, and see the beauty in so much around her. I watched as Jeremy, my step-brother, struggled to answer each time he was asked how life in Romania was. How to answer truthfully and still be a decent conversant? How to sum up a year in a few minutes? I watched my dad flow in and out, returned to the state of a full house of his friends. I watched Marylou set out more and more food, providing people with all that they could need. I watched people re-introduce themselves to Sarah’s boyfriend who she recently got back together with after years apart. Some immediately negative, recalling past misdeeds, others more forgiving assuming if she has come to peace with it so should they. I watched the faces of dozens of people who I have known my whole life. Everyone gave some greeting: a touch, a hug, or company for some time. My life has been touched by so many people and it felt grounding to sit in one seat and let them come to me. 

I ended the night next to my father and a few of those that stayed. I listened to my dad talk to one man, who has been sick with hepatitis for the last 17 years. My dad said he has a whole different understanding now of what it is like to live life sick. This man said he hadn’t made a single long term goal in the last 17 years. He makes decisions about what he can do each day. I heard my dad say that each day in these past few months he has woken up with thoughts about how to make it through that day the best he can. He has always lived in the moment but never been so much at the mercy of his body and the system of healthcare. I watched these two men bond, with big old goofy grins on their faces, and I was so thankful they came to where I could witness that exchange, to where I sat. When you sit in one place you see a great deal.  

When I heard that my dad had cancer a little over a month ago I decided to take his lead in dealing with his illness. After my grandpa and his business partner both fought cancer he said he would never ever go through the "treatment" of cancer as it was worse than the disease. (I guess it has to be to win over the disease). Waiting for him to come home from New Orleans I prepared myself for hearing that he was going to do nothing. I was prepared to accept this but was glad when I didn't have to. He has spent the last month turning his life over to the treatment. Daily appointments, a healthy kidney-friendly diet, a whole new vocabulary, and dozens of pill bottles have quickly become the norm. I am still taking his lead; it is the position where I feel most comfortable. He is hopeful. He is loving. He is reflective. He has taken this period to surround himself once again with the legions of people who love him, to deepen his relationship with his wife, and to develop new relationships with the caretakers who now shape his day to day. One of the bits of information that I heard in the last few weeks really defined my understanding. Multiple Myeloma (do you capitalize diseases?) is not curable like other cancers as it is in the blood. It is a disease that you manage. Hearing this I realized he is going to be sick the rest of his life and this is going to be what he dies of. This is the rest of his life. Sometimes I say this and tears surface instantly along with an ache for the loss I anticipate. Other times it seems just a fact that I am reporting. There is a part of me that wants to know how long and how precisely will it kill him but this would not be following his lead. He seems to want to be hopeful, to be positive, to focus on the here and now. I am successful at this most of the time. 

Playgrounds & Tables: Fantasies of Growing Up

When I grow up...

This phrase echoes through my mind more often than you would think for a 34 year old woman. Somehow I still hold in my mind the idea that there is a stage at which I will feel "all grown up." Perhaps it is an indication of my sense that anything is still possible and I have simply not stepped into my destiny yet. Yesterday and today I have been in Taos, exploring like a tourist. In two distinct moments I heard myself uttering this phrase, "When I grow up..." Once was in a playground that was attached to the back of a toy store. It was no ordinary playground, it was an ultimate playground. There were twirly gigs spinning everywhere in the wind, a play structure that had tunnels, slides, balls, everything to stimulate the body. But best of all there were musical instruments all around the walls. I picked up a shovel and started to bang on a xylophone made from wrenches and then my favorite, one hanging from an arch made from wooden blocks. When I grow up I want something like this in my backyard. Kids? I don't know but I know I want the playful, the frivolous, the inspiration of a space filled with magical moments waiting for someone to pick up a shovel. Then again, later in the day, when we arrived at our home for the night, The Mabel Dodge Lujan House, and I was wandering about awe struck I came to a kitchen table. Again no ordinary table. It was huge, bigger than a bed, all wood. Looking at it I instantly went back to my childhood playing cards at the table while my mother cooked, to a fantasy I have of lots of women around a shared space cooking, making, talking. I want a table like that when I grow up. I want a kitchen where people gather when I grow up. I want the family in my mind. May these moments plant in me like seeds, change and grow into the creation of beauty in the spaces around me. I don't ever want to stop waiting to grow up...

Love and fear

Love is on my mind. Fear too. I had a recent moment in my relationship where fear was the main feeling and I was sure that it was going to trump love. I was spinning in circles, unable to find a way out other than to stuff it so the burden was mine alone or leave the relationship. Thankfully I could hear a faint voice in my head, perhaps that of my therapist, which reminded me that talking about it was probably the best way through. I broke through the fear to text him the phrase, "we need to talk" and immediately felt a sense of relief. My work was immediately different. It was wading through the accusations to the fears, the needs, the questions. I had to get past planning the conversation, outcome and all, and be ready to just show up and see what happened. It took time with another loved one to talk through it first, listening to hear what she heard, and a drive over to his house with loud music blaring to distract me from trying to plan a conversation word for word but I arrived simply present and ready. It was the only fair way to meet him. Also it was the only way I could truly get a solution to what the real need was. 


Sitting across from someone, ready to state a feeling and listen openly was a powerful experience. I am transformed, truly amazed at how an open heart can lead to a whole new level of connection. It really is in working through a struggle that we find secure footing. I love the man that sat across from me, heard me, and in turn shared a hard truth with me. I am in love. Wildly, I can't remember the fear as a feeling. It was so real and then, poof, just gone. The human experience is a mysterious one.