Sunday, December 28, 2008

New Year

People make a fuss about the New Year. The New Year is a time for looking back over the last year. The New Year is a time for new beginnings and resolutions. In my family, pickled herring was a New Year’s requirement. Everyone had to have a piece. I happen to like pickled herring. My kids never took to it. In fact all my loved ones hide when I pull out the jar of herring! I have a dear friend who must have black eyed peas. I think they taste like old gym socks, but he eats them religiously every year. One good friend is Jewish and one is Chinese. They have New Year on different days and months.

But calendars and clocks and New Years are all very superficial and contrived. Time is a human concern. The only thing that matters is this second. That’s what you have and that’s what I have. We get to make choices right now. All the resolutions in the world mean nothing unless we make the choices now. Does that mean we don’t plan for the future? Of course not! Life is full of paradoxes. We live now. We learn from our past, but we don’t live there. We prepare for the future, but we can’t predict what will happen there.

Life is imperfect and often messy. I realized this over Christmas in a new way. One son did not show up at the other son’s house. Strange things seemed to be happening. The other grandma hit the nail on the head. Son #2 did not have money for gifts and was embarrassed. Son #1 is doing well and felt deprived because he could not give the gifts to his brother. Son # 2 made excuses not so see everyone else. Once I unraveled this, I shared the information with the right people. Life is messy. And that’s just fine. Music at church was good, but not as good as I had hoped. Since I am the music director, that sort of matters, but I also realized that life can be a little messy there. And just like my family, everyone grew a little from the messiness of the experience.

So, instead of grandiose resolutions, instead of expectations of near perfection, instead of lists of things I wish I would do, I have a very simple resolution. This year, I will continue to strive to make now the most important thing and to realize that life is messy and that’s OK. Thanks be to God for the messiness of life!

Sunday, December 21, 2008

What Matters

For 4 weeks a “head thing” has been trying to get me sick. But I am smart, so I flushed out my sinuses many times a day and stuck Zicam up my nose. I was sure I would outsmart the rhino virus or whatever was after me. And then…then it went to my chest. This is a big deal for those of us who have autoimmune disease and take immunosuppressive drugs. We can die. I don’t freak out like I used to, at least not as much, but I do take it seriously. So, I called my rheumy, a good friend and a great and caring doc. I left a message at 2 PM. By 6:30 PM I had no answer so I called his cell. I take having my doc’s cell as a very special privilege and never abuse it. But I was gacking up yellow stuff which is a danger sign. I called. He answered. The “girl” had never given him the message and he called in the antibiotics. Never let the pit bull gate keeper prevent you from getting the medical help you need.

You (and I) have a right to get the help we need!
So today, I gacked and hacked and gurgled my way through 2 Masses and 2 rehearsals. Sure, I missed just a few notes biuit was pretty good considering that over the years I have learned to gack and hack while playing and avoid doing that during the sermon or readings. But wonderful things happened. There is this fantastic mature woman in the parish who does quiet, gentle and caring things. After she went to communion she dropped by the organ and handed me a much needed cough drop. Nice. Then Mass at 11 was a Youth Mass and time for the praise band aka Mustard Seeds. For the first time in a year and a half, they were an ensemble, a group, a community. They had this amazing intuitive sense of the music and each other. I was tired and sick and all I wanted to do was go home. But those of us with chronic illness have learned that we work, sick or not. We have learned that you may feel bad, but that staying home does not fix it, so you go on. And that is what I did. An hour into rehearsal I was thinking about how to end it. But the youth were so attentive that I continued. They did amazing things. They did hard things musically that I would never have dreamed they could do. They didn’t know these things were hard so they did them. I didn’t know that living with chronic illness was hard so I did it. You can too.

Christmas is coming. I already got the biggest presents. I got to see kids do more than they knew they could do. Kids who wanted to kill each other (hormonal girls and the subject of another post) put their differences aside and declared themselves BFF. Peace on earth and good will toward one another can happen. We simply need to open our eyes to what is important.

Monday, December 15, 2008


On Saturday, my youth group went caroling to two nursing homes. Ever since my lupus “crash” which was very nasty and serious, I have had a sense of panic every time I go into a nursing home. I get overcome with FEAR. But FEAR is False Expectations Appearing Real. It’s not rational or logical, it washes over you. The fear before my kidney biopsy was a real fear, and has some basis in reality. The nursing home fear probably does not.

So, I approached this little excursion with mixed feelings. I did not want to go because of that wave of fear that was likely to come over me. But, I wanted to be there to lead the teenagers and support them. So I went. And much to my surprise I did not feel the wave of panic. What I saw was older folks, many of whom were lonely. But I have learned something from the losses and changes that chronic illness brings. Everybody loses things. Everybody changes. For those of us with chronic illness, it just comes earlier and faster. That’s all. In the time between my last panic episode at a nursing home and this one, I made peace with those losses and changes, and maybe even embraced them.

The youth seemed uncomfortable and even a little troubled. After they sang, I asked them to go talk to the residents, shake hands if the person could, introduce themselves and ask the resident their name. They did. When it was time to leave, I had to drag them out.
At the second home something wonderful happened. Some of the residents joined in the singing. There was this one woman that I will never forget. As we sang the chorus to Angels We Have Heard on High, her face softened and she looked almost young. She closed her eyes. It was clear that she was back in a time and place where she might have been the one singing “Gloria in excelsis Deo” with great gusto. I thought to myself, “I am making memories now that I can savor later. I will keep making memories, good memories of wonderful experiences.” In that soft smile, in those closed eyes, I received a gift, a reminder to savor now.

Sunday, December 7, 2008

Making Adjustments

After a long hiatus from blogging, how do I begin again? Simple-I begin with a lesson learned AGAIN! When I started this blog, I intended to blog every single day. And for quite a while I did that. There are more than enough issues and challenges in living with chronic illness to blog every day for years! I don’t give up easily, so even on nights when I was really, really tired, I would drag myself to the computer and blog. After all, I made a commitment to myself.
Then, life got in the way. One thing after another required my attention and the blog fell by the wayside. But I’m back. When I teach chronic disease self-management workshops, I ask patients to set goals each week. The goal has to be something they want to do, measurable so they know if they attained the goal, and they need to have a confidence level of 7 or higher on a scale of 1 to 10. If the goal doesn’t meet the criteria, the patients are asked to revise the goal until it does. So my goal was to blog daily. Was it something I wanted to do? Yes. Was it measurable? Yes, if I blogged daily I would know if I met my goal or not. Was I confident? You bet I was, I had a confidence level of 10.
When patients come back the next week, the first thing they do is report on how they did with their goal for the week. If they achieved it, great! If not, they are asked to examine how they can modify the goal for the next week to assure their success. They are asked to examine the obstacles and make adjustments. If changes have occurred in their lives or health, they adjust the goal accordingly.
The point is, life, especially life with chronic illness, requires constant adjustments. When we need to make an adjustment, we are not failures; we are reading the signs and practicing resilience. Our goals must reflect our priorities and those priorities change from time to time. We need to be gentle with ourselves and not “should” on ourselves. (After all we are potty trained!)
Decades ago I read Your Erroneous Zones, Wayne Dyer’s first book. I don’t remember a lot about the book except that it made sense. But there is one thing that remains etched in my memory. It goes something like this. If you are 50 years old, would you let a 30 year old make decisions for you? If you are 25 would you let a 15 year old make decisions for you? Of course not! That would be absurd! Then why do you stay stuck with the decisions that the you who you used to be made, whether that is 10 years ago or last week? Life, especially life with chronic illness, is about creating a new normal. And that new normal is always a work in progress. My new goal is to blog every Sunday. I want to do it. It’s measurable. My confidence level is a 10. See you next week!