Sunday, December 27, 2009


Sometimes you have to hit rock bottom in order to make a change and get yourself together again. It may be a life event, a situation, or simply the time of year that will illicit the change. Life consists of many paths and fortunately we are never stuck on one; it's always possible to alter our course or reverse direction depending upon our need.

Putting things in writing always helps me. Sometimes it's a list, a memo or just a bunch of free-floating ideas. I thought it might help keep me focused to put my priorities into writing, just to keep me reminded of the things that are important to me, the things I want to focus on right now.

Cultivating and nurturing existing friendships: the good, bad and ugly
Taking care of myself (physically, emotionally) and not putting the needs of others ahead of my own, unless it's emergent
Prioritizing what is truly important, what can wait and what isn't worth worrying about.
Taking care of my responsibilities (pets, houseplants)
Maintaining a home that I feel comfortable in and that welcomes those I care about
Living within my values

In order to maintain these priorities I will engage in:
meditation daily
neb/vest treatments twice a day
volunteer once a week
continue to do typing for Yoshi
set aside time to maintain the house and yard
schedule time with friends, but allow spontaneity
enjoying every moment.

Thursday, December 24, 2009


Family. Friends. A warm house. Enough to eat. What else is there?

Sunday, December 20, 2009

Counting Down

One of the reasons I'm really looking forward to getting home on Tuesday........

Friday, December 18, 2009

Our Bite of the Big Apple

Above: The view up 48th street as we were sitting in traffic.
Below: The lit tree at Rockefeller Plaza

Before I wrote my last post devoted to Paul, this was the one I intended to write next. It's taken me
a while to get back on my feet after that to get my thoughts together to post this.

As adventures go, this was an exciting one, and one I'm sure we won't soon forget. We were summonsed to testify as witnesses at a trial on Friday and had planned to make a mini-vacation of it, by staying Friday night and doing a bit of sightseeing on Saturday. We traveled to NYC on Thursday afternoon, in order to have time to meet with the lawyer that evening.

The drive down was uneventful; we made it in 3 1/2 hours and arrived just in time for rush hour but the GPS guided us right to our hotel on Lexington Ave. Unfortunately, the main entrance was on 48th street and we had to drive around the block in order to drop the car off with the valet. It took us quite some time to make it around the "block" as we ended up on a through street that didn't allow turns, but that allowed us to drive by Rockefeller Plaza and see the tree that had just been lit the day before, as well as the throngs of people who were also there to see that site.

We arrived at the main entrance of the hotel like a couple of country bumpkins: shoes flying everywhere, all my medical equipment and several trays of pastries we had brought as gifts for my cousin. Our car was whisked away and we were shown up to our room, which was on the 22nd floor with a pretty view of other buildings, all lit up. Cars driving down 48th street below looked so tiny! After setting into our room we decided to take a walk and get the lay of the land. We walked up 48th, back the way we had driven, to see Rockefeller Plaza, the Christmas tree and the skaters. What a pretty site! People were everywhere, Christmas music was playing outside many stores and there was a festive feel in the air. It was easy to forget the real reason we were in NYC: the trial.

After exploring a bit we met with the lawyer and my relaxed feeling soon turned to panic. Yikes! We were going to be on the stand and questioned about the accident we were witnesses to 5 years ago by both lawyers. I wasn't worried about the plaintiff's lawyer, but was very nervous about the opposing counsel, after hearing he was "ruthless" to the witness on the stand the first day. We were given our depositions to review and instructed to meet the lawyer at the courthouse, in lower Manhattan, at 9:30 the next morning. We were due to testify at 11.

We both re-read our depositions to refresh our memories and retired for the evening. The next morning, not sure how long it would take to get from our hotel to lower Manhattan, we left t 8:30 by cab. It seemed a good omen that we hit all green lights on our way to the courthouse, which was just on the edge of Chinatown. We arrived so early that we had time to walk around the neighborhood and do a bit of shopping at one of the neighborhood shops. When we returned to the courthouse, the lawyer reviewed our depositions and the questions he would be asking us. We were left to wait.

Eleven o'clock rolled around and went to the courtroom where the case was being tried. Joe was called in at 11:30 and questioned on the stand for an hour. I wasn't allowed in the courtroom while he was testifying, but I'm told he did an outstanding job. I was next and was only on the stand for about 30 minutes, 15 of which the lawyers and judge spent outside the courtroom, conferring about lawyerley matters. I was more than relieved when allowed off the stand and the experience was over. Whew! The judge declared it was time for the lunch recess and were excused for 30 minutes.

The sense of relief after being done with the testimony was enormous and we were able to enjoy a quick lunch of Chinese food at a small restaurant in Chinatown. Joe and I decided we would like to be in the courtroom to hear the testimony of one of the expert witnesses, a doctor who had treated the plaintiff since the accident. It was interesting to follow the testimony and second-guess the lawyers.

That evening we had an impromptu dinner of bread, cheese and fruit purchased at Grand Central Market, which was an amazing bazaar of shops all under one roof: butcher, baker, fruit stand, prepared foods, cheese shop, spices.. it was truly a feast for the senses. Unfortunately everyone else was shopping at the same time. With our bellies finally full, the fatigue hit me like a ton of bricks. I needed to crash and we took a cab back to the hotel and I fell sound asleep, only to awaken the next morning to the sad news of my close friend's death. There would be no sightseeing; how could I even consider it after such news? I had some calls to make before posting the news online, at his mother's request.

Friday evening and Saturday morning, before the phone call, I had such a feeling of relief and also satisfaction that we not only survived the experience, but hopefully did a good job and didn't make complete fools of ourselves. Even at this advanced age, I still have plenty of self-doubt, but it's reassuring to know that stressful situations like this can be handled and we not only survive but grow and gain confidence from the experience.

Sunday, December 6, 2009

Fly Away, Cystic

The unthinkable has happened. Since we met, I've been preparing myself for this, knowing it would be the biggest blow of all, but the preparation made not a speck of difference. How could it have? I never truly believed it would happen.

Paul is gone. My longstanding cystic buddy. He was at the brink so many times and was able to right himself by force of sheer will, I honestly believed he would do it again this time. He had more lives than 10 cats. He was a cat. A cool cat. He hated water, being touched and was a finicky eater. In the end, though, he was just as human as the rest of us and had finally had enough. He went the way he wanted to: in the comfort of his home, in his favorite easy chair, with his devoted mother by his side.

How do you capture a person's essence with mere words? Paul could. Paul would have. I can't do it. He was a very caring person, at times confused by human relationships and interaction, but that never deterred him. He never stopped reaching out. He was an amazing support and teacher to those in the CF community, often contacting people privately to shed light on a question they asked. He had an amazingly quick wit, was able to find humor in almost any situation and made puns that I sometimes didn't figure out for days. He was one of the most intelligent people I've ever encountered yet never talked down to people. He had the gift of being a natural teacher and no topic was beyond his grasp. I often teased him that if it was physically possible, he would have been able to perform his own double lung transplant, he had researched it so thoroughly.

Another friend said it well: this is the end of an era. Paul was a fixture online, often holding court in the CF2 chatroom, entertaining everyone with his witty banter and offering support to those who needed it. I really can't believe he's gone and probably won't for quite some time.

The biggest burden of CF, for me at least, is not the daily treatments, the hospitalizations or even feeling sick, listless and short of breath; it's saying goodbye to those we meet along the way who touch us profoundly and become part of us through our association.

'Bye, Paul. I hope you know how many people loved you deeply and how many lives you touched. Thanks for being my friend and meeting me at the Terminal; I'll treasure that memory always.

Tuesday, December 1, 2009

How to Measure?

As we approach the end of another year I find myself assessing and reviewing 2009. Was it good? Was it bad? Certainly a lot of good things happened: Joe found a job after a year of being unemployed, which is a much better fit than his previous one. Wilson is doing well in college, enjoying his classes and has a wonderful group of friends. Our house looks nice and is comfortable after some renovations. My parents are healthy and happy. My brother is in his newly rebuilt house, has a job and is content. We have 3 pets that we love dearly who continue to amuse us with their funny antics.

On the other hand, we lost our beloved Charlotte and my health has been a bit more of a struggle than some years. There have been quite a few losses in the CF community as well, all of which are difficult.

Each day, each month, and each year has its trials, tribulations and triumphs. This is a given: no day, month or year is going to be free of stress, some heartache or conflict. That's just life. How can you compare one year to the next? Each one is unique and will have its share of joy and pain. As long as we're alive that's the price we pay, so best to enjoy every moment while we have it.

Practice Makes Imperfect

There's a reason meditation and living mindfully are referred to as a practice - it is a continuous process; there's really nothing to be achieved, no point at which you are done. Sometimes it will be easier than others and the goal is just to keep at it.

I've been getting a lot of practice with my practice this week in the context of a situation that is beyond my control - something that is typically quite difficult for me. I could allow the issue to dominate my thoughts, but what would that do? I can't make things happen any faster than they are meant to evolve; the key is to be able to accept the things as they occur and take them as they come. My mind tends to leap forward, playing out different scenarios that have yet to happen- hoping to prepare itself against any possibility, planning my reaction in advance as a way to keep control over the situation. Yet, most often, dwelling on events in anticipation rarely does any good. I have no way to predict the future and it only causes me to lose my focus on what is before me at the moment. The present is where my attention belongs because it's the only thing that is. Everything else is just thoughts to keep my mind busy and distracted.

There are so many variables in life over which we have no control. Yes, we have control over ourselves and our reactions, but anything else is really a delusion. Oftentimes the more control we try to have over situations and people the less we actually have. I've found that letting go and not trying to control things, although scary, is a good way for me to decrease my stress level in the long run. I'm still practicing!