Death

(Yesterday I turned 57. How cool! I am happy that I am looking down at the grass instead of up at it. Six years ago next month, the doctors told my sons not to expect me to live. I got calls from people I did not ever want to talk to and was baffled, but morphine does weird things to your brain. They didn't tell me that I was not supposed to live, so I lived! And as I begin a new year of my life, I am glad I am here to share this with you!)
Why do I think so much about dying? Why do I feel like this is the beginning of the end?
Everyone knows that all living things die, including people. Yet somehow we don’t expect it to happen to people we love and we certainly don’t expect it to happen to us. Everyone who is born dies, in fact, we are in the process of dying from the minute we are born. When we feel healthy and vibrant, we simply can’t wrap our minds around our own death. Just like teenagers when they drive recklessly or engage in other risky behaviors, most of us think we are invincible.

In Western cultures, we have sanitized death. We preserve bodies so that visitations can go on for days and burials can be delayed. We remove death from the home and place it in hospitals, hospices and nursing homes. We put make up on the deceased to make them look alive. Visitors can often be heard to say, “Doesn’t he/she look wonderful?” while looking at a deceased loved one. We keep children from knowing about death. Is it any wonder that we generally act as if death will never come to us? In many non-Western cultures, death is a normal part of life. Death is not sanitized and death is not hidden. Ten of the forty traditional meditations in Buddhism have to do with contemplating corpses!

Chronic illness reminds us of our own mortality, not once, as in a heart attack or bad accident, but daily. Aches and pains, medication and limitations, doctor visits and lab tests are constant reminders that our bodies are not functioning as they should. We study each new symptom trying to figure out if this is the beginning of the end. The stress itself makes the symptoms worse and we begin a downward spiral. We become anxious and our muscles tense causing panic attacks and pain. Sleep eludes us and the fatigue makes everything worse. Fear and depression become constant companions.

Contemplating death is not a bad thing, fixating on it is. We will die when we die. All the worry in the world will not add one minute to our lives, but is certainly may shorten them! Rather than spending time crying, “Woe is me,” we can value every moment that we have. What would you want the epitaph on your grave stone to say about you? What would you want your obituary to say about you? What would you want those who are left behind to say about you? Are you living your life right now in such a way that this will be true? If not, what are you waiting for? Chronic illness can be a tolling bell or a wakeup call. It’s up to you.

Karen nearly died from an acute episode with her chronic illness. After coming to terms with her own mortality she purchased a cremation plan and wrote her funeral instructions and service. Karen wants her epitaph to read, “She left the world a little better than when she came in,” and “She squeezed every drop out of life.” She’s still with us and her disease is in remission!

Catastrophizing

I started the Christmas Crud early this year, just before Thanksgiving. For most of my life, I got sick on Christmas and stayed sick until Easter or later. I noticed that other people didn’t get sick and stay sick for so long, so I figured I was just flawed somehow. Staying home and resting never fixed it, so I learned to keep pushing. In 2003, however, the annual Christmas Crud got really bad, bad enough to land me in the hospital for 14 days, bad enough to place me on disability for 4 years. And, thanks be to God, bad enough to finally get the diagnosis of systemic lupus erythematosus with major organ involvement. I am in remission now, chemically induced, but I will take any remission I get!

And then came this year’s Christmas Crud. At first, I brushed it off. It got better and worse and better and worse, then it got nasty. Antibiotics didn’t touch it. On Christmas Eve, I sounded like a cat gacking up a hairball and I am sure that disrupted the congregation’s worship, even though I continued to play through the gacking. On Monday, I was truly miserable and for the first time in a long time, I began to catastrophize. I took deep breaths to try and figure out if I had pleurisy or pericarditis again. I watched my urine for bubbles that could indicate a nephritis flare. I imagined the worst and hoped it would not happen.

Here is the catastrophe scenario. The lupus flared, you will lose your jobs, you will crash, your life is effectively over. BAM! Even though I know better intellectually, even though I have learned to use cognitive therapy to ward of this kind of thinking, it crept in. When you live with chronic illness, it’s easy to take every little change in your health and body and imagine that is a bell weather, a sign of the beginning of the end. But awareness can head off this catastrophizing. If you are aware that you catastrophize, then you can be ready and replace your thinking and change how you feel. Plan ahead. Have replacement thoughts ready.

And by the way, I am a lot better now!

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!

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.

Now

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.

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!

Understanding

It’s strange how when you share your views with another person, you end up clarifying your own thoughts. This is why when you teach something, you really appropriate the knowledge far more thoroughly than when you are a student. What provoked tonight’s rumination? A phone call from a patient! We talked for quite a while about support, and more importantly, the lack thereof. As I listened, I tried to really hear what this person was saying. I shared similar experiences. People with chronic illness often lament that “they just don’t understand.” No, they don’t. And no, they can’t. Even if people are around, ultimately, we each have to go on this journey alone.

When I was expecting my first child I was terrified. After five years of not using any contraception, I decided that I took after my mother and would have a hard time conceiving. But unlike my mother, I wasn’t obsessed with motherhood and certainly wasn’t going to go through all kinds of medical tests and procedures in order to have a child. I would turn my attention to my career. As soon as I made that decision, I got pregnant. It was then that I realized that each of us has to do the most difficult things alone. Someone “understanding” how I felt when I hurled in the morning didn’t change the fact that I hurled. My husband being with me in labor (22 very long hours) didn’t change the fact that I was the one having the contractions or that I was the one who had to push my son into the world. What was going on in my body was my experience and mine alone.

Back to tonight’s conversation…As we talked, I heard myself say, “I finally realized that they don’t have to understand. They don’t have to get it. Once I let go of the expectation that they understand, once I stopped trying to make them understand, I was free to get on with my life. I was free to make my peace with my illness. I didn’t have to waste energy explaining, describing or convincing. All that energy was freed up to create a new life.”