Revealing My Insides

An inside look. What do we see when we take an inside look? Do you know what this film captured? It is an inside look. Sometimes an inside look shows us mysteries, sometimes it reveals something expected, but it always adds dimension. That is what it is like for me to have a writing practice. This blog has become my writing practice.

Having a "practice" or way to express my inner so that I can examine the workings is so important. It reveals some of my vulnerabilities. I have learned that that is the sweet spot. We all avoid that place, the Vulnerable Place. We all must have an image of what that place is inside. For me it is a place to hide. It is the boulder along the path that provides convenient shelter so that when the other hikers come along there is no way they can see me. I can hide behind like a rabbit and shiver in my place with no one knowing. Other travelers will journey past and never guess that I was there. Good, I like it that way. Safe and alone.........

Confronting illness and life threatening situations chips at that boulder. Opening to the emotions that arise and being willing to put them on the table honestly is a tool that works like a chisel. I have been chiseling. It has been liberating. I have allowed you into my journey, into some of my vulnerabilities, not all of them mind you. I need to keep some close still. Writing is a safe tool though. I can write, revise and change and then write again. What is seen is the finished product. When you are on film that is another thing.

Anna and I have tried doing a little Flip camera filming of ourselves. We will try some more today. It is so different when your face has to be seen and your words have to just spill out of your mouth with no other ability to edit, change punctuation or spell check. There you are, recorded, visually, audibly. Vulnerable.......

We have agreed to participate in filming ourselves and to be filmed to perhaps be a part of the saga of the documentary movie, The Power of Two. We have already been a part of filming sessions and there will perhaps be a snippet or two of both of us in the film but on Thursday the director and camera man will come to the house for a more formal interview.

The film is about organ donation, transplant and cystic fibrosis centering around the lives of our dear friends and double lung transplant recipients, Ana and Isa. Their journey, started a little over a year ago, is the core of this documentary and has been amazing. They have brought international awareness about the need for people to sign up as organ donors and spread the word about the miracle of transplant. It is a great and inspiring story.

The timing of this film and Anna's need for a transplant has coincided so that her story about being in real time on the list adds an important dimension to the documentary. It feels right to share with this project what is going on in our lives. Perhaps it will help others who find themselves where we are. That is the perspective we have. We dedicate our participation to others who may need support or connection through this film, as well as, to the need for education about the truth of this miracle and how it can be offered to many more, so that they are not lost while waiting on a list.

So, it will be another lesson in VULNERABLE. I must keep my rabbit out munching the trail grasses paying no mind to those that stop to watch.

If you are interested, go to: http://www.thepoweroftwomovie.com/

The photo above was taken of my insides, the insides of my knee when I was in quite a vulnerable moment....... an amazing world in there.

Another Top Banana

After I finished my post this morning I was reminded that there are other members of the bunch that are pretty fantastic in how they "hang" with us. There is one in particular that must be mentioned as a true Top Banana.

She is very special to all of us. She is a "surrogate" daughter and a "sister" and one of the best friends you could ever have. When we need her, Linda comes and fills in to do treatments and other chores that need to be done. She has been our safety net. In fact, we just got a tingle ling on the phone with a text message that offered dinner on Thursday (sushi, maybe?). You need to know the appealing properties of our banana, Linda!

She is beautiful, fun, smart, loving, considerate, kind, crazy, and wonderful. Linda is a non CFer friend of Anna's who is such an important part of the CF community. Years ago her dad was a hero in our community when he invented a new CF drug, Pulmozyme at Genentec. He was invited to visit CF Summer Camp as a guest and brought his daughter along. She instantly became part of the pack. Linda came back year after year enjoying the fun, making deep and lasting friendships and not being afraid of connecting with a community that lost members frequently at young ages, ages similar to hers. She hung in there and gave and gave and still gives and gives. Linda always goes to Retreat and this year was part of the bunch that helped Anna be able to be there by giving treatments.

Linda we love you and want you to know you are truly part of Team, Anna Banana's Bunch and stand out as a top banana!

Just A Bunch Of Bananas

The team work is working. Last May we understood that we had to operate differently in order to support Anna. She was quite ill and there was no way that she was going to be able to care for herself without help. We had to lay a plan but we also had to go with the flow and see what arose from day to day. We had to see our selves as a team, the five of us, Anna, Sara, Casey, Doug and me. We thought that we would need more help with treatments but so far even that has worked well between us.

We make plans one week at a time. We assess everyone's schedules, Anna's appointments, how we are doing individually and go with a plan. It can change each week and we have to have the flexibility to let it do so. Like this week, I arrived yesterday afternoon instead of the morning. Sara took over the morning to do treatments. I can not yet really walk well or go to the grocery store as is my usual Monday job so Doug took over that job on Sunday. He did Anna's grocery shopping in Livermore and cooked up a grand batch of barbeque to last a number of days. Doug took the day off to take care of me, take me to my post surgery appointment, and drive me back to Sunnyvale. When we arrived at Anna's condo we stacked the refrig for the week.

While Casey and Sara were back at work I started treatmenting again in the afternoon. Doug did more errands. Now we are set for the week. Today, Anna and I will be pathetic patients sitting on the couch with oxygen tubing, wrapped knee, ice water flowing, only to get up to eat and treatment. Where are the bon bons Guys? Hey, can't we have a little indulgence here?

Last night we also celebrated Casey's birthday! Flexibility again. We were all together, the team. His birthday is really today but the celebration could not wait. Happy Birthday, Casey, truly a special guy and very important part of our team. At birthday dinner last night it was announced that we now have a name for our team, are you ready? It is Team, Anna Banana's Bunch! Hey that is cute. Five bananas hanging out together, so appealing.......

What makes this team work well together?
• We have a common cause, save Anna.
• We are very honest with each other, there is no other way to be in this situation.
• We have a structure with wiggle room.
• We laugh when ever we can.
• We cry when ever we need to.
• We fill in for each other and watch out for each other. It is not OK for any one of us to get too tired or burned out.
• We love to eat good food and enjoy good wine at our evening meal.
• We are committed and will do everything it takes.
• We have great friends and some very sweet family members who support us.
• We believe in this miracle of new life for Anna through transplant.

So, go us! Team, Anna Banana's Bunch! We still have steam, it has been about two months of this concerted effort. We are weathering the storm of me partially down for the count, but coming back, slowly. We may have more months of this. Or it could change today........ who knows? Let's stick in there fellow bananas, we can do it!

After all, we are, birds of a feather who stick together..... or, is that just plain, too corny? I know, yes, it is, I can hear you groan, "Oh, Mom!" Just could not resist, it is me and the feather, bird thing.........

Insight, Grace and Faith

So strange, as I have said, that I would have surgery right now. The experience forces me to look for lessons, gifts and why this happened now, of all times. It is the mystery again, the crows in their black garb cawing and calling me to understand, something, but what?

The moment I woke up from the anesthesia I was amazed that it was already over. I had surgery on my knee! The last thing I remembered was the anesthesiologist wheeling me toward the O.R. after I said my, wish me lucks, to Sara. The Dr. told me, "I am giving you a little something in your IV", and then I guess I was out, boom, no consciousness, deep sleep. Next I knew, I was being woken up.

It was immediate that my mind turned to Anna. Is this how she is going to feel when she wakes after her surgery? Is she going to begin to hear voices saying, "wake up Anna. Time to wake up, Anna." As she comes to consciousness will she first be aware of her breath? Will she try to see what it is like to take a big breath? Will she realize that atleast 8 hours had past with her on life support in the midst of such a huge surgery? I started to cry as I stirred from this deep dream state to wakefulness. I was given the gift of a taste, an intimate sense, of how she would feel, the gift of an insight. I woke up with a fixed knee but she will wake up with the possibility of a new life. I can not imagine the full impact she will feel but for that moment in my awaking I had a sweet taste.

For the last couple of days I have had to learn what it means to be a good patient. That means staying still, leg raised, drinking fluids, feeling vulnerable. To be a good patient you have to let yourself feel vulnerable and be vulnerable. You have to let others who you usually care for, take care of you. That is so hard to do. Will you please get that, and please pick up that, and oh I forgot I need that. Boy, how bossy can you be?

I would say to my dear mother, who became so very vulnerable in her later years, that she was giving me an opportunity to give. She had a hard time accepting that. But, I guess it is like that. We all have to take our turns. Grace is when we realize our position and accept it and do the best we can with it. If we resist when we are vulnerable and don't let others help us we create more problems for everyone. Mom accepted help at times but for the most part she resented her situation and made it difficult to give with joy as I was always deflecting the guilt and the feeling bad that she projected. So, I guess I learned then that it is better to let others help and to "get out of the way" so that they can help with joy. Hmmmm, not sure I really learned that one.

It is really silly to say things like, "I am so sorry to have to ask you." "I am so sorry that you have to do that for me." "I wish you did not have to do that for me." These are things similar to what Mom would say all of the time. I have been saying a lot of that to Doug the past few days. Like my mother, it has been so hard for me to be in this flat on your back, knee raised position. He is cooking for me. Doing the errands for me. And, it really is fantastic, just wish I could shut up the voice that says these stupid self effacing things. When the "One" in charge is no longer, it is hard to let go.

This gift is a teaching to let go and let others help while allowing myself be vulnerable and needy. This is a recurrent theme in my life to learn. Anna is doing this in her circumstance of severe illness, she does it with grace. I will continue to learn from her. Gracefulness is a good goal.

What has also happened in this time is that I chose to undergo this surgery because I saw a window of opportunity and I took it. I trusted that it was the right time and all would work out. It has, it is. In making the decision I had to act fast, no dilly dally, I had to have faith. This has strengthened my sense that there is a pattern, a way this is all to work in its intricate workings, in the creation's intricate wisdom.

gifts of insight, grace and faith..........

I thank nature, wisdom and the crows for calling me to these lessons through the current workings of my life.

Day Two, The Grapes Continue To Ripen

"Hi Mom. How are you doing?" the daughters ask in unison on speaker phone. "Better, I am walking some with the crutches", I tell them. "No, no, no. Stay put. Do not do too much", Anna scolds. "But dears, I am sleeping a lot and taking good care of myself. I am supermom. Nothing is going to get in the way of my caring for you. I am getting better. I need to get up and at least Pee. Can you give me that?" "Okay", they relent.

Day two of my surgical experience and I am looking out the window into the vineyard. No pain. No need for vicodin today. Just need the cooling ice waters soothing my stitched and repaired knee. Hope it will be like new one day soon. The meniscus strands were cut away so that it would no longer weep its internal knee tears causing a swollen bulge. I was beginning to call myself Hop a Long Cassidy. Hopefully this will get me back to myself, strong and sturdy, and a regular consistent exercising schedule. The old body is not what it used to be.

While I am having my knee drama, the teachings of CF Retreat have performed their magic for Sara. She also called earlier this morning to share about an incredible experience she had. A young man from Texas came to the Retreat this year to perform a one man show about CF and Organ Donation. He performs this act around the world as a way to fund raise. The key element is that he is a brother of a CF patient who passed away. The show is about the story of his little brother and his experience being his brother. As Sara said, she has wanted to find a connection with other siblings who are willing to share about their experience and it has been hard for her to find people to connect with. Last night she did. She said that the whole show expressed her inner feelings, hopes and fears about being Anna's sister in a way that "touched her soul".

This young man's brother with CF was a very ill little child and received a transplant at 6 years old, so very, very young. His donor was a three year old little girl who tragically lost her life and in turn give him life. Sara said they were so moved. It brought the whole situation into focus with how someone must die before our loved ones can receive life. So big, so big. Her sibling experience was acknowledged in a very powerful way giving her what she has been seeking. This is so important and such poignant timing now. We are so happy for her that she was able to witness this performance.

As Sara shared this news, Anna I.M.'ed on the computer to her Dad. It was announced on facebook that there is to be a lung transplant at Stanford today. She wanted Sara to know as she is the research messenger and will be on call today to go to the O.R. and pick up the recipient's lungs. Yes, indeed, there is a double lung transplant in process as I write this blog post. It is not a CF patient but another with equal need. May this go well and may she live fully, fulfilling the wishes of the donor family, carrying forth their loved one's unknown participation in her destiny.

Let us all stop for a moment and imagine this team of miracle workers in the O.R. doing their amazing work changing life immeasurably. Surround them with light........

And we still wait for Anna's turn. When it is right, like when the grapes on the vine outside my window ripen to be picked for heavenly wine. Timing is everything.

One, Two Three.......... Knee Surgery

Before this next dose of vicodin fully kicks in and my head starts to swim I want to report that all went well today. I can not believe that I had surgery! If you had asked me just two days ago if I thought I would have knee surgery with a general anesthetic today I would have called you insane! Why in the #@?! would I complicate our lives and risk my care giving skills for Anna now, at this time? Crazy, Insane, Looney, Nuts! And now I must say that the greatest thing was that it was so quick, from that telling look on my doctor's face to his appearance in his cute blue net hat in the O.R. I just dove in, did it, no time to ruminate, no time to worry, no time to fret. The time is now. One, two, three, GO!

Sara picked me up at the apartment at 5:15 AM to arrive by 5:45 AM at the out patient surgical center. I did not give myself any time or space to doubt. This was getting done. I was trusting that this was the best time for this, the lungs could not possibly appear while I was under the knife and that I will have a little time to heal before they do arrive. Of course I may have a lot of time to heal. That is the great unknown. Life happens, they say, and in the Modlin household that seems to be definitely true.

I am now situated with crutches by my side, ice water flowing through a nifty blue tube system around my knee, the phone in arm's reach, and my bag packed. If lungs should arrive tonight, I am ready! But, I am sure glad that I have Doug to drive (and generally be my slave for a few days). These drugs are a bit disorienting, yes it is now kicking in. Time for shut eye..........

P.S. Thank you Sara and Wendy for taking such good care of me. And you too, Doug.

My Turn, Me First.......

So, I wrote last night in my latest post about baptismal waters being our challenges and how we need to dive in. I am promptly writing another post this afternoon. Here I go head first, arms above with hands pointed towards the water's waiting crust. Today I discovered that tomorrow I am to have surgery! Oh my. Why did I say that we grow from all of this? Why can't I have a little denial for just a little while?

It was June 24th that I first posted about my instantly swollen knee. It still is. It is bothering me. It feels thick and unbendable and it is a fat knee, not a pretty knee. I never really appreciated my knees until now. I want a pretty knee back again. Today I learned how I can have it back.

But I must describe the full drama of the day. I left at 6:30AM to be sure that I could move through traffic and get to an orthopedist appointment by 8AM. After about 20 minutes on the road as I traveled through the inland valley of open spaces and golden hills I noticed that something was missing. I could not believe that I forgot my cell phone. Unbelievable! What a mother! Just when Anna is on the list and the call could come at anytime and we all agreed to be poised with our trusty cell phones at our side. Mine was still on the kitchen counter. What a %#$&?!##? I am. "Ok, breathe. That is always the answer to stress. Now, how do you feel? Like a stupid mother!"

I arrived at the Stanford Clinic building and as I entered the elevator and the door closed to take me to the second floor, I noticed a handy button. It was called HELP. Wow, a HELP button. We all need one of those especially in times like these. The elevator safely delivered me and I checked in to the sports medicine clinic and called home. "Hi. Guess what? I forgot my phone. If there is a call for the OR call me here." At least they could track me down while I sat phoneless in the clinic room with my fat knee on display. The doctor appeared and in his wisdom informed me that the way to a pretty knee is surgery. "Oh, wait a minute. My life is a bit complicated at this time." I told him about Anna and waiting for a double lung transplant and the unknowingness of my life. He firmly let me know that putting this on hold until months had passed and Anna was through her surgery was not a good idea for my dear old knee.

Well then, what to do? "I can do it tomorrow. I will be here doing a surgery for a 49er tomorrow." Whoa, tomorrow? I thought it through and it made sense. Here I have a three day window where Anna will still be at Retreat until Sunday eve. I have to be on crutches for three days and can not drive for three days. Perfect. I guess another serendipitous occasion. I signed up for tomorrow.

I immediately had my pre-op appointment, signed the official surgery permission form and now I prepare for surgery tomorrow. I'm first. Anna will have to wait. It would be just too crazy if Anna received the call while I was down for the count tomorrow. That would be too weird and actually not a great manifestation so, lets scratch that possibility and opt for a more opportune time after I get through this initial time of healing and Anna gets home from Retreat. Do you hear us universe? Don't want to be too picky but can you give us a little break here?

Be careful for what you wish for. If you wish for life to give you lessons about meaning, it might do that. If you wish for a lesson in compassion, it might give you that. If you wish for a prettier knee then it might offer you surgery! If you realize that you are not fully in your body, that you need to get out of your head and incorporate deeper into your physical being to be grounded (as I have) then you may be offered a physical experience. The positive part of this is that I will also need physical therapy. So long as I can get there and it does not interfere in Anna's care that will be good for me. I will get to have a "trainer" and do exercises that I need to do and have not had the discipline for. I am looking forward to that. I will take care of this knee.

But this crisis is all with perspective. When telling Anna she nobly offered, "Mom, I can go off of the list for a week so that you can get better first." Her mom cried, "Are you kidding? You think I am going to be preventing you from being able to receive lungs? Never. I will be fine. You are staying on the list!" What a wimpy surgery I am having, a little knee cleaning up compared to the major lung replacement. I am glad I have less than 24 hours to ruminate on it though. I am very glad that I will get it over with. I have never had a surgery before. Guess I needed to be in the spot light too. Who knows what this is really about, but I do know who is the stronger and the most courageous. It sure ain't me. It's my daughter.

As for me, I wish I could have one of those HELP buttons to carry around so that when ever I needed it I could just give it a little push, like right now!