Valuable Lessons from Chronic Disease

I've pondered this post for a long while, not wanting to appear whining or complaining, yet knowing that I'll need to draw, in part, from my own experiences and that it could come off that way. I don't mean it to. That's not what I do.

But in recent weeks, my chronic disease, bronchiectasis combined with asthma and a dangerously compromised immune system, has become more challenging. I'm learning a lot about living with chronic illness that I suspect could be useful to those who have family or friends that have one too. So, I thought I'd share a few observations.

What is "chronic illness"?

Without going all medical, it's basically an illness or ailment (think chronic back pain) that cannot be cured, just managed. Chronic fatigue syndrome, asthma, arthritis, Chron's disease, Coeliac disease, MS, Parkinson's, depression, persistent pain, autoimmune diseases or acne, are some -- there are lots of others. Wikipedia (not the best medical source but good for the basics) lists diabetes, irregular heart, high blood pressure and cholesterol, COPD, even some forms of cancer. It didn't list sleep apnea as one, but I would.

Also (according to Wikipedia) "The World Health Organization (WHO) reports chronic non-communicable conditions to be by far the leading cause of mortality in the world, representing 35 million deaths in 2005 and over 60% of all deaths.

In other words, taking more vitamin C won't cure it. Won't hurt. Won't help much.

A lot of us have chronic disease or medical issues and don't really realize it (probably most of us!). We think it's just the way we are. And it is. But sometimes it is more aggressive or obvious than others. There can be a lot of gray area and a lot of deep water to wade through. Sometimes it's pretty tough to deal with.

What does "managed" mean?

Certain medicine or treatments may alleviate pain or symptoms, but the disease or condition doesn't disappear. You're not cured, just in better control. I don't like to be "managed." Even by Gypsy, who tries his best! When it comes to certain things, I'm a serious control freak. I pick my battles wisely, but in many things, and certainly in terms of my physical and emotional self, I like to be in control.

People with Chronic Illness aren't always in control.

By this, I mean that if you have a chronic illness, you can't depend on yourself to be at your best for a big day out or have appropriate or not-annoying behavior in public. For example, I cough uncontrollably. Scares people. Scares me. Not the best behavior in a concert, say, or at a lecture or meeting. Those with arthritis may not be able to open a jar or package or do a craft like knitting as easily as others. Others require insulin or other medications to maintain their balance.

You can take your meds, do all the right things. But you can't control the illness without external assistance. For those of us like me who prefer to be in control of our own lives, this is difficult. It wears you down, and sometimes you can't control your emotions.

(We'll talk emotional control, in a minute!)

People with Chronic Illness are often tired.

Some chronic issues do not affect sleep. Others do. In my case, I might cough so much I can't get to sleep for several hours after I've gone to bed and I may wake up in the night with the coughing. Rick is a saint and Gypsy is an angel. Let's just say that you don't want to be my roommate. The next morning it is almost impossible to get going.

But for those with sleep apnea or chronic fatigue, or those who have persistent back pain, for example, sleep can also be affected. And it's not just that you don't get enough sleep -- it's that when one operates without sufficient sleep, it can affect mood, reflexes (which can impair tasks like driving), ability to perform work tasks as well as when you're at the top of your game, or even the ability to work at all.

People with Chronic Illness are often embarrassed.

It depends on the illness, but for folks like me who have something that is obvious, it can be embarrassing. Believe me, when I cough, which is frequently, people know I'm around. It's gross. I'm not contagious. But I sound like I have the flu. More than once I've been in an enclosed elevator and people just shrink away -- if they could crawl into the wall, they would.

I was a theatre major. I know how to act and I do it every day. I performed on stage and I love doing TV when I can and speaking gigs are one of my favorite parts of my job. I don't mind being the center of attention when the attention isn't on my health. When it is, I'm the one who just wants to melt into the wall.

People who have Chronic Illness (or at least some) will work as hard as they possibly can. Maybe to their detriment.

Well, maybe that's just me. But I don't think so. We want to show people that we can be productive, do things as well or better than anyone else. We're not going to let a little old health problem get us down. We're not slackers or shirking a job or a task. Sometimes that means not taking as good care as we should. People tell us to let go of things. We ignore them. That's not good, but it's what we do. (Well, it's what I do.) I'm working on that.

People who have Chronic Illness can be fragile emotionally -- more than they show.

When you never know just what 'episode' or physical event is going to kick you into a bad place, it can be scary. You try not to think of the friend who died too young -- or in my case, my father's story, which has some parallels to mine. I always understood much (not all) of the nature of my dad's physical illness, but it wasn't until many years into my own that I realized the terrible emotional toll it took on him. Feeling broken and out of control. He was prickly, and now I fully understand why.

It may not be one thing that breaks you down, but the collective accumulation of little things -- personal loss, workplace issues, a fender bender, the death of a friend or concern about a pet. My problems getting helpful information from the doc's office had me completely flattened. Almost everyone gets overwhelmed when lots of unpleasant things happen or stress is increased. Everyone. But when you're physically challenged, that emotional stress seems to hit in a more visible way. Many Chronic Illnesses can't be seen. Therefore, people think you are just fine. Just terribly weepy. (I truly believe in my case, my emotions are far more fragile than my health.)

Sometimes that's OK and just what you want. Sometimes, it isn't. When you break your leg or have a body part replaced or get shingles all over your face, everyone knows and is maybe a little more willing to cut you a break, lend a hand. When you have something that isn't so visible -- and there are a lot of those -- it's pretty easy to forget that person might need some TLC. (I am very blessed that most of the folks around me "get it." That's not the case for everyone.

What Do We Need?

That's probably the biggest question I'm asked -- What do you need? How can I help? There really isn't a good answer.

Sometimes I'd like to say "cut me some slack," but the truth is, the one I should be telling that to is myself. Understanding if I withdraw is helpful. Sometimes it's just too much effort to pick up a phone and call someone, partly because I have to talk (without coughing if possible), partly because I want to be engaged in the conversation and sometimes I just can't be.

We had dinner with dear friends the other night, a semi-regular Friday night gig. I was so tired I could hardly communicate, yet it meant so much to be with people I loved. After I touched base with a number of people about what is going on with me medically and its implications to my life, my friend sent a note and said "I could tell something was wrong, but decided not to ask," respecting my the darker world of my silence.

Ironically, she is one of the people I could tell openly because of our friendship and because she understands. In her note, this strong cancer survivor said "There's a lot I could say from my own body/health experiences, but I think that would take away from just being with you/hearing you in this moment." I can't tell you what that meant.

Don't undermine my confidence in my health care professionals.

It's all right to suggest a second opinion or share something relevant. But accept my choices.

Understand that for any of us, every day (or at least some of them) can be a physical challenge. Whether it is movement because of pain, being ever mindful of protecting ourselves with the appropriate medications, staying awake, keeping odd hours (because we stayed awake when we would have liked to have slept) or dozens of other things, we sometimes feel like every day is climbing a mountain.

It's important to have confidence in the professionals who are helping us walk through our path to wellness. I do my research, I have people I can ask, just to make sure things seem "right." If you see something that seems terribly wrong, make sure you say something. But don't destroy my confidence in the people who are helping me most.

The Power of Positive Thinking

I often take a lot of good humored flack for being one of the most half-full, optimistic and positive people around, trying to look at problems as opportunities. For years, I've tried to spread the word that we can't always change the things around us that bother us, but we can change the way we approach them or let them go. I really do believe that. I have tried for years to look at the half-full of illness, which is wellness and the part of me that is well.

But understand that sometimes we have to face up to the realities and until we do, we can't shift the attitude to treating the problem as an opportunity. I'm a big believer of visualization as a powerful technique to heal and enrich so much of our lives. Everyone has their own thing and it might not be yours. But accept it. Just as you accept when they become overwhelmed.

I am recently reminded that Steve Jobs delayed surgery in favor of alternative treatments that weren't as effective. This will vary for everyone based on their personal beliefs, but I believe strongly in facing up to the medical realities and working with a good team, while not overlooking the additional benefits of complementary alternative therapies.

That won't work for everyone, but it is worth remembering that the mind is a powerful part of our operating equipment. How we use it matters.

Lots of love helps!

When I posted something on Facebook about some bad news, I was overwhelmed with the kindness of people who replied. Overwhelmed to tears. Support is so valuable.

And on that note, I want to thank my blogger buddies who have often been a lifeline of friends I've never met (for the most part!). You're the best. Of course, you don't have to listen to me cough day after day. But somehow, I think you'd understand!

Friends are the best. Period. They are our angels. Our lifelines. I am grateful to each and every one of mine, as well as to Rick, my office colleagues and my family. You see, it's for people like all of these that we really want to be at our best. Speaking personally, you are my motivation and you matter more than you know.

NOTE: All these pix are mine (as usual) except for that lovely one of the bridge on the Seine, which is by my Parisian friend Jerry. Thanks, Jerr!

Creating "With Friends"

My annual art sale was this past weekend. I didn't have the inventory I usually do, but I did have some new things and thought I'd share a few of them here.

I love this piece of ephemera -- I use this little mermaid all the time!

I use this guy all the time, too! He may be a tabby and not orange, but he reminds me of a Gypsy I know! The lace (a huge box of lots of different kinds) came from my friend Mary Jane, who gave me a huge box of her mom's craft supplies when she was trying to pare down her house.

This lady was kind of pretty, too. The ribbon is very old ribbon from France, sent by my friend Jerry.

I made a number of journals in various sizes. This large one sold the first night. Some of the pieces on this and other journals I did were courtesy of Linda (Shoreacres) who sent me a lovely package filled with beads and earrings and keys, perfect to glue on things! Thanks, Linda!

Here's another I like with pink vintage bits. I bought the dragonfly at Artiscape.

And these are smaller ones. More for a purse than deep recollections. The square bit near the top came from an earring I bought at a Jane Rosemont yard sale before she moved to Santa Fe. I miss Jane and her fabulous yard sales! You'll see more "Shoreacres" jewelry and naturals from the lake and Myrtle Beach.

Then, the birdhouses!

These were two of the new ones. Loved the holiday feel of the red and white one. The mushrooms and birds were from the Mary Jane box!

Then I started pulling papers I'd made in a Jacqueline Sullivan "Artiscape" class for this one. And a Shoreacres key! The glass firefly was from my San Francisco friend, Cathy.

Meanwhile, this one was nice and rustic. Can't beat cinnamon sticks for steps! A Mary Jane bird, a "Shoreacres" key,,,

Then I got on a "bottle kick." You'll note more Shoreacres earrings on the tops, with cork stoppers from my friend Kate!

I was just fond of the pretty holiday feel and I really loved the vintage tinsel, which I bought last year in Arizona.

As you can see, part of the joy is in the making. But in almost every piece I do, there is some personal connection with a friend, a holiday, a special surprise or a vacation. That makes all the things I do so meaningful to me. Other people might not know or care. But for me, the art of creating is also an opportunity to think of people I love!

Facebook and Birthdays - When It Makes You Sad

Does it freak anyone else out when they see Facebook announce the birthdays of friends who have died? Or when it says "You haven't connected with (Name of Friend)" and suggests you do so?

Really, I'd love to connect.

My friend Mary Jane died this past summer. Between the topsy-turvy activities at work, vacation, some travel, regrouping, I'm not sure I really have grieved her death.

Mary Jane and I worked with each other for 30 years. Maybe longer if you count my volunteer time at WKAR before I was hired. We sat in on a ton of meetings -- some of which I used to call "the dysfunctional family pledge meetings" during which five of us, all with very different personalities, tried to whack out a money-making TV pledge schedule with a variety of programs that weren't particularly terrific.

Mary Jane with our colleague Marge

In these days before computers had good programs for putting the monthly broadcast schedule on easily changeable program grids (the programmer's collection of titles, broadcast rights and sources all put together in the monthly schedule), Mary Jane would come to those meetings (and every meeting) armed with post-it correction tape. She must have used miles of tape during her career, and we teased her about it constantly.

"One day your epitaph will read 'Here lies Mary Jane. She ran out of tape,'" I told her -- the correction tape being a pun with video tape, the format in vogue at the time. She would laugh heartily, agreeing.

At Maggiano's, Philadelphia with Joe, Mary Jane, Beany, and Steve

During countless PBS conferences we'd travel, dining at some terrific spots. At one, a Maggiano's in Philadelphia, she and I, along with three of our fellow colleagues (above), got into a conversation about asparagus and its effects on the gastrointestinal system that had us laughing so loudly and raucously that we were all quite sure that had we not been in a protected corner, we would have been asked to leave.

Another PBS trip to San Francisco, with Tim, Beany, Mary Jane and Steve

Mary Jane was one of the most honest women I've ever known, with little artifice. If you looked terrible, she'd tell you and ask if you were all right. If you had issues with your current gentleman caller and she knew enough about him to have an opinion, she would weigh in. When Mary Jane would tell me my coughing was getting worse, I knew I'd better make a doctor's appointment. And she'd remind me.

She also had a heart of gold. I recently found a notecard she sent that said "This just looked like you!" She always remembered me (and others) at the holidays. As the multiple myeloma that would one day take her away from us was beginning to take its toll on her body, she began to give her clothes away. Since I fit her old size, I was the beneficiary of a number of terrific jackets, sweaters and outfits, all of which I wear today.

Mary Jane was private. We could all tell her illness was intensifying as we would see her come to the station -- long after she had retired -- to volunteer. A small group of us would periodically go to dinner. She would eat little, but loved the company and always had a positive attitude and one of good cheer. Even when she was down a bit or frustrated, she still was upbeat, if that makes sense. It made being with her all the more fun.

I don't know if Mary Jane really realized she was dying the day I went to visit her, several days before the doctors told her Hospice was her option and about a week or so before she died. She was having a great day, glad to have company. I had brought her some silk flowers from a collection taken up by our staff and she loved them, partly because they were so cheery and partly because she knew they would last without the hassle of caring for them.

She said she was looking forward to going out to dinner with me and two of our colleagues, sorry that she had missed an Easter brunch not too long before. And, that she was looking forward to getting together with staff friends for lunch as soon as they could fix her up so she could eat again. She had a smile, she laughed. There was a spark.

Then she said, "I hope you won't feel bad about this, but I really want to give you back something you gave me for Christmas," she said. She reminded me I'd given her a gift card to one of our shopping areas, good for any store, restaurant or movie theatre. I knew she was paring down her possessions as well as needing smaller clothing and thought this way she could choose what she needed. I told her to hang onto it -- she was going to need new clothes when she got out, and if she didn't feel up to it, I'd be glad to go get her what she needed.

And I really thought, "she'll get out of here. We'll get a milk shake at Johnny Rockets, have dinner, and she can get a new blouse or pair of pants. Or maybe some books."

I thought maybe there would be more time. I was wrong.

I came home from vacation at the lake to attend Mary Jane's memorial service. She had a lot of friends and they all came. She had planned it all herself, down to the music. After, there was a luncheon at the church.

"Don't leave before I see you," my former general manager, Steve, said to me. "I have something for you." Steve was Mary Jane's executor and had helped her with the hospice arrangements and so much more. He later slipped into my hand an envelope. "Now don't freak out about this," he warned me.

I knew exactly what it was.

Today, Facebook will remind me to wish Mary Jane a Happy Birthday. I will do exactly that and lift a glass to toast Mary Jane. Although, it may seem sort of odd that the birthday girl is buying the drinks.

Note: The two close-up photos of Mary Jane is this post are by my friend Mike Lewis.

Harry the Heron -- One More Look

Pretty soon, Harry the Heron will headed south -- or wherever herons go when the water in Michigan becomes covered with ice.

Indulge me with an all-heron post. One more look at Harry!

I will miss his style of natural camouflage. There are times when I really have to look for him.

I'll miss trying hard to hold my small little camera steady, the lens at full zoom, as I wait for him to give me his profile.

I'll miss his positions -- that beautiful neck extended and handsome...

...gracefully bent into an S-shape...

... or crouched as he searches for the next hapless fish to swim by.

Or this one -- gracefully twisted.

I love watching him fish. His eyes are sharp.

He'll watch the water, statue-still...

... then pounce!

I'll miss watching him preen and using that sharp beak, pick off whatever is bothering him.

I'll miss the camaraderie as people walk around the Ditch and say, "Is the bird here yet?" I've met lovely people, just talking about Harry, as we watch, spellbound, his reflection a mirror image in silhouette.

I'll miss the colors of Harry -- his gray and white against the greens and golds of autumn.

I'll miss looking for him in new places -- this wee island brought him closer than ever.

And I'll miss his dramatic contrast which would often elude me.

Sometimes photographing Harry at such a distance in light that doesn't always cooperate is tough. But even the results bring their own energy and memories.

Some moments are simply, as Relyn says, unphotographable. I call them photographs of the heart. This is almost the closest I could get to Harry in flight. And that's OK.

It's twilight at the Ditch. Soon, the last of the color will be whisked away by windy nights and rainy days.

Harry will head to warmer waters. And I will await his return...

... remembering a beautiful autumn and my beautiful big bird.

NOTE #1: For those of you in the Lansing area who would like to catch a look at Harry, he's located in the largest pond of the drainage ditch between Wood and Fairview, just north of Grand River.

NOTE #2: Visit "Chopsticks and String" for a look at the book "The Paris Wife."