Wednesday, July 30, 2008

Ask for What You Need

Ask for what you need. Give others the gift of allowing them to help. The first week home after a 14 day hospitalization, my oldest son and his wife stayed with me during the day. Weak and frail, I spent my time on the couch or in the bed. The next week my youngest son and his girlfriend took their turn babysitting me. While I was afraid to be alone, I didn’t really want them there all the time. I was afraid of losing my independence, but I never said a word. The kids had no idea what to do for me. They felt as helpless as I was. The first week, my babysitters made sure I was fed and comfortable and then they rearranged my kitchen cupboards. They didn’t know what else to do. At least they weren’t sitting there looking at me with pity and fear and I kept quiet. The next pair of babysitters made sure I was fed and comfortable and THEY re-rearranged my cupboards for the same reason, and I kept silent for the same reason. When they finally left me to my own devices, I couldn’t find a thing!

When I got sick as a child, my mother would sit beside my bed and stroke my forehead ever so gently. Her touch was soothing, her quiet voice reassuring and calming. When she was beside me and everything was going to be OK. I desperately wanted someone to do that for me. The one thing I really needed and wanted was someone who loved me, stroking my forehead, and just being there. No words were needed and certainly no cupboard cleaning. But I didn’t tell them. I didn’t get what I needed. But there is another side to this. My family wanted to help. I was silent about my needs, so they guessed. I ended up resenting the fact that my “stuff” was not where I could find it. Even worse, I robbed them of a chance to help me. When we don’t say what we need, we aren’t being noble and considerate, we are denying others the chance to show their love. What do you truly need? Will you give others the gift of helping you?

Monday, July 28, 2008

The Blame Game

It’s my fault. If it’s not my fault it has to be somebody’s. Maybe it’s genetic. We rack our brains searching for a family member who gave us the faulty genes. Are we just plain defective? Did our parents do drugs or drink or smoke? Were they exposed to radiation or toxic chemicals? Then we question ourselves. Did I exercise enough? Did I exercise too much? Did I eat junk food? Did I abuse my body? Did I get enough sleep? Did I allow stress to get the better of me? Could I have done better? Is this payback for not caring enough about my health? Maybe it’s something around us: pollution, genetically modified crops, pesticides, drinking water, fluoride, vaccinations, radiation, the hole in the ozone layer. You name it, you can blame it. There has to be a reason and we won’t rest until we find it.

The fact is we have chronic illness. It would be nice to know what caused it. The causes are elusive at best. Even if we did something to bring on the illness, we can’t change the past. All the blame and guilt in the world can’t do that. Suppose the cause is genetic or environmental. How does that change what’s happening to you right now? Suppose you actually contributed to the onset of your illness. That won’t change your current condition either. But it will saddle you with a load of guilt. That guilt will make you feel even worse. All the blaming in the world will not make anyone better. Stop playing the blame game. Harness that energy to actively manage your disease and have the very best life possible!

Saturday, July 26, 2008


How many times have we taken a nice, fresh sheet of paper and written “TO DO” across the top? We start with things that simply have to get done. And the list grows. Pretty soon it includes every single unfinished thing in our lives. Organize the sock drawer? Write it down. Untangle the Christmas lights even though it’s June? Write that down too. Oh and don’t forget to alphabetize the spices! List making is not unique to sick people, everyone does it. The trouble comes when we make lists based on what the healthy self could accomplish. Our inner list maker is out of touch with the body. It’s downright unrealistic. The list becomes an exercise in futility. We start, but pain or fatigue or confusion stops us dead in our tracks. Or we don’t start at all. Just looking at the list is enough to immobilize us. Now what happens? We failed. String a bunch of failures together and our already damaged self esteem takes a nose dive. Why bother trying at all? Go back to bed or watch TV. It’s no use anyway.

An African priest told me that your list for the day should be no longer than your wrist is wide. That’s probably five or six things. Keep the list short and then shorten it some more. Can something wait? Take it off. Can someone else do it? Ask them and take it off your list. Take off everything that falls into the category of it-would-be-so-nice-if…the spices were alphabetized. Start the one most important thing on your list. Applaud yourself for starting. Can you take another step? Good! Or try a different approach altogether. Instead of a TO DO list, keep a DONE list. Start with your blank piece of paper and write down each thing as you complete it and I do mean EVERYTHING. Got out of bed, showered, made breakfast, brushed teeth, dressed, opened mail, threw out junk mail, and so on. Look back over your list from time to time during the day. See just how much you have accomplished and be proud. Lists make good servants, but terrible masters.

Friday, July 25, 2008

Human Being/Human Doing

I am a human being, not a human doing. I have value because I exist, not because of what I do. We define ourselves by what we do. We also define ourselves by our relationships to other people. Chronic illness strips us of what we do. Chronic illness strips of who we were in relationships. In our nakedness we might just discover that we are human beings and that just being is just fine.

Thursday, July 24, 2008

Don't Stress? You've Got to Be Kidding Me!

Exactly how is someone telling us not to stress out supposed to help? Is there a switch somewhere that we don’t know about? We are staring in the face of some really frightening stuff here: loss of independence, identity, jobs, health, freedoms, hopes, dreams. The future is uncertain at best. But don’t stress? And don’t they think we know that we are stressed? The fact that others tell us not to stress implies that we are too stupid to know we are stressed and too stupid to know stress makes disease worse. Kick us when we’re down!

My own doctor said these very words to me. The short list of what was going on at the time was kidney biopsy, going on chemo, no job, no insurance, eviction notice on door, no hope of working and a nasty divorce going on. Don’t stress? Yeah, right! I clenched my teeth and sat on my hands, trying not to bite his head clean off or throttle him on the spot. Of course we don’t enjoy the stressful state. But it would be really nice if just one of these healthy folks who tell us not to stress would tell us HOW!

Here is one way. Set aside 20 minutes where you can be alone and uninterrupted. Wear comfortable clothing. Think about a word or phrase that brings a smile to your face. Words like peace, serenity, joy, tranquility, or whatever you like. Or pick a phrase from your own spiritual tradition. Sit quietly. Close your eyes. Notice the sensations of breathing-the cool air entering your nostrils, your lungs filling and emptying, notice everything. With each breath, think the word or phrase you have chosen. Let go of everything else. Other thoughts will come into your mind. Just notice them and think, “Ooo there goes a thought.” Let it go and return to breathing and your word or phrase. At the end of 20 minutes or so, open your eyes and slowly begin to move your body a little. You will be amazed at how calm, refreshed, and unstressed you feel!

Wednesday, July 23, 2008

Suffering Is Inevitable, Misery Is Optional

The first noble truth of Buddhism is that life means suffering. No one makes it through life without suffering. We can see that for ourselves. Some people experience a change, crisis or health issue as a reason to live their entire lives mired in misery. They complain loud and long to anyone who will listen, and even to those who don’t. Chronic complaining becomes a substitute for action. Chronic complaining keeps them in a victim mind set.

Others accept that there are things in this life that are beyond their control. These people know how to cope. They know that although they can’t control what happens to them, they can control their reaction to whatever comes their way. I have a friend who went for a routine checkup only to find out that he needed coronary bypass surgery. After the initial shock, he made a decision to be the very best heart patient that doctor ever had.

Complainer or coper? The choice is ours!

Tuesday, July 22, 2008

All or Nothing

On bad days, we think, “Why bother? What difference will it make anyway? Who cares? I don’t! It’s useless. I don’t know what to do anyway!” We end up feeling like failures because we didn’t do anything to make changes in our lives.

On good days we make elaborate plans for how we are going to improve our overall health. We plan exercise regimens, new diets, vitamins, etc. Maybe the plans are unrealistic for where we are right now. Or maybe we don’t define what we are trying to do. I’m going to eat better is very different from saying I’m going to eat 5 fruits and vegetables a day every day this week. Or we don’t calculate all the steps it will take to get from here to there. We end up feeling like failures because we didn’t fulfill our plans.

Success is midway between all or nothing. Suppose you want to exercise. What will you do? How long? How often? What do you need in order to accomplish your goal? What is a goal that you KNOW you can achieve? The first week, walk for two and a half minutes, then turn around and come back. Do that three days out of seven. If you want to do more, fine. By keeping the goals measurable and achievable, you will start having success. Each success will restore confidence and give you the desire to work toward the next goal. What step will you take towards your goal today?

Monday, July 21, 2008

Is Anybody Listening? I've Been Wronged!

Victims of crime have their power taken away. Not only do the victims feel violated, they also feel ashamed. Why? Harold Kushner describes it this way, “The shame they felt was the shame of powerlessness, the inability to protect the integrity of their own bodies.” (Living a Life that Matters). As part of the healing process they need people to “acknowledge that what happened to them was wrong.” Only then is the burden of shame lifted from the victim and placed squarely on the perpetrator.

Being a victim of chronic illness is very much like being a victim of a crime. Our power is taken away, at least for a while. We feel violated and we also feel ashamed. The integrity of our bodies has been compromised. We have little control. But people are not as likely to listen to how we have been wronged by disease. In fact, many will secretly and not so secretly blame us! In cases of diseases where the cause is not understood, the blame increases. We need to be heard and acknowledged. Only then can we put the burden of shame down and begin the process of healing.

Sunday, July 20, 2008

Everyone's an Expert

Isn’t it amazing how when you have a chronic disease, everyone becomes a medical expert? Why don’t you try herbs, vitamins, magical tropical juices (which only make the pyramid scheme sales people rich), more rest, less rest, more exercise, less exercise, a raw foods diet, the maker’s diet, giving up meat, eating more meat, juicing, a different climate, more sun, less sun, positive thinking, not stressing, and on and on. A total stranger in a discount house tried to persuade me that a “special juice” would cure my disease, after all, there was a story about it on Yahoo! No kidding.

Reality check: Would so many millions be allocated to research if the cure was that simple? Don’t you think the researchers might just have checked out some of these theories? Would so many people be sick and suffering if these proposed cures really worked? And just why are we supposed to think of all medical people as the enemy? The disease is the enemy, not those who treat us. It makes sense to eat a balanced diet and it makes sense to take the best care of ourselves that we can. But to expect a miracle cure in the latest fad is senseless. But Redd Foxx sums it up better than I ever could, “All those health food nuts are going to feel mighty foolish when they’re lying there in the hospital dying of nothing.”

Saturday, July 19, 2008

I Know Why You're Sick

Isn’t it interesting (and very annoying) to hear people’s explanations of why we are sick and they are not? Most of them seem to give cosmic significance to our illness. Here are a few of my favorites. God is testing you. There must be a lesson you are supposed to learn. Your illness is a gift. Your illness is a blessing in disguise. What doesn’t kill you only makes you stronger. If you had only exercised more, eaten better, stressed less…you wouldn’t have gotten sick. People actually have the audacity to say these things!

A friend was with me when I was taken to the emergency room with pericarditis, pleurisy and pleural effusions, bone marrow failure, thrombocytopenic anemia and beginning renal failure. As I lay on the gurney, struggling to breathe, she said, “See, you should have stopped smoking.” Well, yes, she was right. But my problems were caused by my immune system attacking my own healthy body parts. (And it should be noted that smoking worsens autoimmune disease, especially lupus!) It was her way of making sense out of what was happening. By the way, I was less than gracious.

Our sickness doesn’t make sense to them. Our presence in their lives reminds them that they are also vulnerable. It could happen to them, too! So people construct a chronic illness theory. It’s a theory, not a fact. The theory helps them feel safe, somehow above getting sick. I admit, there are times when I challenge these statements and not too politely. But, realizing what motivates people to say these things, I am able to let it pass.

Friday, July 18, 2008

Go Away, You Bother Me

Isolating our selves is easy. We have a hard time keeping up with the “healthies.” We don’t feel like we fit in their world anymore. Being with them is like observing people through a window. We see what’s going on, but we are on the outside looking in. We can’t connect. “Hey, it’s me, I’m out here and I’m miserable, don’t you notice?” We don’t want to talk about our disease and we don’t know how NOT to talk about it. We used to have things to talk about when we were out there in the land of the healthies. Now all we bring to the conversation is our aches and pains, lab tests and meds.

Rather than face the ordeal, we isolate ourselves. And without the regular daily give-and-take of interaction with others we draw more deeply into ourselves. We have time to think, indeed too much time to think. We make mountains out of mole hills. We become suspicious of others. What are they thinking and saying about us? We become depressed. Nobody cares. We nurse resentments. We become anxious about every little thing. In isolation we can have our own pity party without anyone else there to provide a reality check. The longer we stay in this place, the longer we want to stay there. And the longer we stay there, the less people will want to be around us.

What to do? First, be aware of ways you isolate yourself. Second, make a goal of reaching out to just one person each day and of having a conversation about something other than your illness. Call someone and chat for just five minutes. Ask how THEY are feeling. Really listen to the other person. You have to power to go up or down. May you choose up!

Thursday, July 17, 2008

Why Comply?

This morning I was reading Living a Life That Matters by Harold Kushner. I was reading to pass the time on the dreaded “Oompa Loompa Machine,” but more about that tomorrow. Kushner mentioned Lawrence Kohlberg’s “three stages of moral development: doing right out of fear of punishment, doing right out of a feeling of communal solidarity with others, and doing right because it is right. I believe this has implications about how and whether we comply with our treatment plans.

There is one rheumatologist in my city who terrifies patients into compliance. He tells them they have stage four lupus (there are no stages in lupus) and that if they don’t take the medicine they will DIE! I know a rheumatologist who will not renew a patient’s prescription for hydroxychloroquine or plaquenil (a maintenance immunosuppressive that most lupus patients take for life) unless they produce the results of their annual eye exam. That’s not punishment. It’s more of a strong nudge because she cares. Most of the people in my lupus support group take their hydroxychloroquine without much concern. There is a kind of camaraderie about shared minor and major annoyances caused by lupus. But we take our meds knowing we are all in the same boat. This solidarity makes it easier for new patients to take their meds too.

But if you take away the threatening doctor, the nudging doctor, or the camaraderie of the group some patients will slip up. The bottom line has to be that we follow our treatment regimen because we know it is the right thing to do to control our disease.

Wednesday, July 16, 2008

I Can't Believe I Ate the Whole Thing!

I love cheesecake-rich, creamy, heavy, moist New York cheesecake. In fact, I could eat a whole cheesecake in a day. When I was a scraggly 114 pounds I did just that! After all, I deserved it! I felt miserable, had endured so much, was tired, was skinny, lost my jobs, didn’t know how I was going to survive (ya da ya da ya da) that I had an inalienable right to indulge in some kind of pleasure and decadence. I deserved cheesecake! Right? Wrong!

We don’t have to, in fact we shouldn’t, deny ourselves little pleasures and comforts. But if our ultimate goal is to feel better, then eating the “whole thing” probably won’t contribute much. Eat mindfully, not emotionally. Are you eating because you are hungry? Are you eating to savor the flavor of every morsel? Or are you eating out of depression, sadness, anger, or some other feeling?

(I wonder how many apples you would have to eat in a day to equal the calories in an entire New York cheesecake?)

Tuesday, July 15, 2008

What Do You Need?

We can’t get what we need if we don’t say what we need. We can’t say what we need if we don’t know what we need. Why don’t we know what we need? It’s not as simple as it sounds. Stop reading for just a minute and ask yourself what you need. Did you stop? Now take a look at the “what I needs.” Some things are not possible right now, like a cure. Some things will be what other people think you need. Our self-esteem can be so damaged by chronic illness that we actually believe others know what we need better than we do! Sometimes we don’t think we deserve what we need so we certainly don’t deserve to ask for it. Or maybe we have adopted the stereotype of the silent suffering sick one. Then again, we might have learned not to say what we need in our families. Or we think others will not approve of our needs. My bet is, that it’s “all of the above” in varying degrees!

Find a private place, take an hour for yourself, and write about your needs. Consider these questions taken from the January 3 reading in The Language of Letting Go by Melodie Beattie (one of my all time favorite books), “What do we need to do to take care of ourselves?...What do you want? Need? What don’t you want and need? What do you like? What would feel good?” Then you are ready to ask.

Monday, July 14, 2008

A Child in Your Bed

“What you need is a child in your bed,” said Monsignor Ndeukoya. I stared blankly. Not wanting to be rude and too tired to argue, I remained silent. I was at my worst then, too weak to even stand and shower. The last thing I could imagine wanting was a child in my bed. He looked at me intently. “You see, you Americans are so isolated, so disconnected from your family. The generations aren’t together. Look at you. Your family is in this city, but you live alone. Your grandchildren connect you to life.” Monsignor was from Moshi, Tanzania, on Mt. Kilimanjaro.

As much as I tried to dismiss what he said, I couldn’t. Here I was fighting as hard as I could to remain independent. But that night, as I went to sleep, I thought of my one year old first grand child. I went and found my teddy bear and slept thinking of her. Maybe he was right.

Tonight, as I write, both my grandchildren are here-still awake and yes, they are in my bed! And Monsignor’s words came back. We don’t have to have a child in our bed, but it helps to have one in our lives. If you don’t have one, borrow one, even if it’s only for an hour. Let yourself see through their eyes. Sing silly songs. Laugh. We sang “Cheeseburger in Paradise” over and over, and each time the 4 year old change the words and we roared! “Cheese burger and pair of mice!” Crunchy! Monsignor was right.

Sunday, July 13, 2008

First Day, Last Day

If today was the very first day that you were alive or the very last day that you would have on this earth, what would that be like? What would you do? What would it be like to taste chocolate for the first time, or the last? What would it be like to smell a flower, look in the face of someone who loves you, feel the breeze or the sun on your skin? Would you savor each experience? Would you drink in every detail? Are you living each day that way? Can you?

Today IS the first day and today could be the last day for every person on the planet. No one knows who will be here tomorrow and who will not. Make each moment, each experience a first and possible last. Then there will be no regrets.

(Friday morning, my neighbor Pat lost her battle with lupus nephritis. May she rest in peace and may light perpetual shine upon her.)

Saturday, July 12, 2008

Get Out of Your Mind, Get Out of Your Head!

We spend a lot of time thinking and a lot of time worrying. Each new symptom leaves us wondering if we are getting worse. We do this sort of body scan, where we are constantly on the alert for something else going wrong. Then we worry. We worry about now. We worry about the future. The “worry tape” loops continuously…what if…could it be…it’s worse…there’s no hope…how will I ever…etc.

We feel like we’re going out of our minds. The problem is not that we are going out of our minds; it’s that we are stuck up there. We are living inside our own heads. The solution is to get out of your mind and back into the here and now, the real world. Easier said than done, you say! The first step is awareness. Observe that chatter going on inside your head. The second step is to stop the tape. Read a book, watch a funny movie, call a friend and talk about anything BUT your illness, eat something and really observe the taste and texture. Distract yourself. The third step is to replace the tape. Write down positive substitutes for the negative things you have been telling yourself. Tape them to your mirror and around your home. I am glad to be alive. I am lovable. I am a proactive patient. Whatever works for you. Or try this; put a little adhesive dot on your watch or clock. When you check the time, the dot is a reminder to repeat one of your positive statements.

Friday, July 11, 2008

People Say the Darndest Things: Everyone Gets Sick, Everyone Gets Tired

I think it is a misguided effort to help us not feel so bad when people tell us, “Everybody gets sick,” or “Everybody gets tired.” If they are trying to make us feel included in “everybody” that’s nice. It doesn’t work, but it’s a nice try. Sometimes, I really want to respond with a snappy, “Really? Wow! I had no idea! Thanks for cluing me in.” But that’s rude. (When I am on steroids, I will most likely say it anyway-‘roid rage, you know.) Other times, I want to take a more educational approach. “Yes, everybody gets sick but YOU get better and I don’t.” Or, “This kind of tired is like when you worked all day, stayed up all night, and worked all day the next day. It’s bone crushing fatigue and a burning brain.” It doesn’t do much good. The folks who live in the land of the healthy just can’t get it. What we experience is not your average sickness or your average fatigue. The sickness is not cured by medication and the fatigue is not relieved by rest.

Here is the problem. They make a casual remark. What we hear is a judgment. We SHOULD stop complaining, suck it up, realize that this is the human condition, put on our big girl/big boy panties and get over it. There is not much you can do to change their perception. But you can change yours. Remind yourself that your experience of chronic illness is your experience, no one else’s. Other people don’t have to understand it. And you don’t have to educate them or kill them!

Thursday, July 10, 2008

Turn the Tables

I had lunch today with a delightful young man who has cerebral palsy. He works with the disabled community in Portland, Oregon. He told me about a young woman recently diagnosed with multiple sclerosis. She was planning to have her boyfriend move out and determined not to live back with her parents. Why? She didn’t want to be a burden on anyone.

When we impose isolation on ourselves and when we refuse to let people do anything for us, we think we are noble. We are bearing our suffering stoically and alone. The people who love us should go on about their lives. After all, we are a millstone tied around their necks. This is an excuse! We don’t want people to help because their help is a reminder of what we can’t do. We don’t want people be around us because we can barely stand to be around ourselves. We don’t want people to care because we feel unlovable and unworthy of their care.

Let’s turn the scenario around. What if you were the healthy person and someone you loved had your condition? What would you want to do for them? Now, think about how you would feel if your offers for companionship, help, and just being present were categorically rejected by that sick person you love? We can and should do what we are able to do for ourselves. The kind of help that makes us dependent when we don’t need to be is not good help. But to deny help when we need it, to deny love and companionship when it is freely offered is downright selfish.

The next time you find yourself in this situation, turn the tables. Pretend you are well and the other person is sick. You will know what is right.

Wednesday, July 9, 2008

Health Insurance: Chronic Illness and Disability

On July 10, 2008 I have the privilege of speaking at a National Health Council public forum in Orlando. The opening and closing paragraphs are today’s post.

A society is judged by how it treats those who are most vulnerable. There are those who pride themselves on being the voice of people like Terri Schiavo, unable to make decisions about their own care. There are those who pride themselves on being the voice of the unborn, defending their right to life. But where are the voices of the concerned citizens of this country and where are the voices of our political leaders when it comes to defending chronically ill or disabled people who cannot access even the most basic medical care because they are denied or can’t afford health insurance?

I am here speaking today, crying out on behalf of over 100 million of my brothers and sisters, who like me, have a chronic disease or disability. When you deny us health care, you are removing our feeding tubes. When you deny us health care, you are aborting our lives. Our founding fathers said it much more eloquently in the Declaration of Independence, “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.” Health care is a right, not a privilege for the healthy and wealthy. The right to life belongs to all people, not just those on life support or those still in the womb. Health care is the key to life. Today, we ask our leaders in government to guarantee the right to life to all our citizens by fixing the system. Our hope, indeed our very lives rest in what you do. Thank you.

Tuesday, July 8, 2008

Medication: Blessing or Burden?

Every time we take a pill or refill a prescription, we are reminded that we are sick. Even if we are symptom free for a while, that pill reminds us about what lies just under the surface. Is it any wonder that people often “forget” to take their medication?

Try this. Learn what each medication does to control your disease. Then as you take your meds, think about the good things they do for you. This is not the time to think about side effects. All medications are a matter of risk versus benefit. Right now we are focusing on the benefits and ONLY the benefits. Rather than resenting the medication, give thanks for it. Say to yourself, “This medication helps me by_____. I am thankful that I live in a time and place where my disease is treated and medications are available.” Let your medication be a blessing.

Monday, July 7, 2008

God Doesn't Give Us More Than We Can Handle

What on earth prompts people to say such stuff? I could write a book! Wait, Harold Kushner already did, it’s called When Bad Things Happen to Good People. I recommend it highly! Back to the task at hand. First of all, most people say this without thinking. Or they don’t know what to say but feel like they have to say something. Or they can’t make sense out of what is happening, and this is their lame attempt. They have heard it during hard times and so think this is what you say. Second, it assumes that God “gives” us chronic illness. And under that assumption is another one; we are all supposed to have perfect lives but sometimes God sends crap our way. Third, they ignore the fact that our ‘civilized’ life style, complete with toxins, pollutants, pesticides, processed food, stress, sedentary lifestyles etc… might just have something to do with the whole mess. I am not saying that illness is punishment for civilization. I am simply pointing out that there could be a connection between our very unnatural lives and illness. “God doesn’t give us more than we can handle” is easy to say when you are healthy.

People are going to say things like this. They always seem to say it when we are feeling most vulnerable. We can’t control what they say, but we can control our reaction to it. Honestly, I have literally threatened to bite people who say this. A better choice is to prepare your reaction and response ahead of time. The response is very individualized. These days, my response is a lovely (false) smile accompanied by, “Thank you,” and a change of subject. What will your response be?

Sunday, July 6, 2008

Twenty Questions

Forty plus years ago, I was on a retreat. We had a partner exercise. One partner asked the other the same question twenty times in a row. The other partner had to give a different answer each time. Then the two switched. The question? Who are you? Here are my answers today:

1. Linda
2. A person
3. A woman
4. A mother
5. A friend
6. A musician
7. A helper
8. A teacher
9. A writer
10. A grandmother
11. Someone who laughs
12. Someone who loves
13. Someone who plays
14. Someone who brings about change
15. Outspoken
16. Someone who prays
17. A brave person
18. A risk taker
19. A daughter
20. Someone who happens to have lupus

In the late 60’s I could come up with less than 10 answers before I stalled out. I was in my teens then. In 2003, I would have had only one answer. I have lupus with major organ involvement. That is who I was. In July of 2008, I have twenty answers and could go on for quite a few more.

Who are you? Take a piece of paper and answer the question twenty times. What does your list reveal about who you think you are today?

Saturday, July 5, 2008

At the Movies: Monty Python's Holy Grail

The setting is Medieval England during one of the great plagues. A couple of peasants walk through the village. They are pushing a wheelbarrow piled high with those who died from the plague. As they walk they call out, “Bring out your dead! Bring out your dead!” A man is tossed on top of the pile of bodies. He lifts his head and exclaims, “Wait, I’m not dead yet!”

Our hopes and dreams for the future seem gone. Things we used to do seem gone. Our loftiest aspiration these days is to manage a shower and remember to take our meds. Have you tossed yourself on the pile? Have you given yourself up for dead? Or will you cry out, “Wait, I’m not dead yet?” And here is the most amazing thing; the empty places left as a result of chronic illness create space so we can see clearly things we never considered before. I’m not dead yet, are you?

Friday, July 4, 2008

Independence Day

What if I lose my independence? What if I have to move in with my adult kids or my parents? What if no one will care for me? What if they put me in a nursing home? What if I become homeless? What if I lose my mind? What if I die alone? We catastrophize. We imagine the worst. We relive these “what if” scenarios in our imagination, embellishing them each time.

Reality check. Anybody on the planet, including the healthy folks, could become incapacitated at any time by accident or catastrophic health event. The difference is this; our chronic illness invites us to think about it more often. You can change the future by worrying. Here’s how. First, the stress of worrying will make your overall health worse. Second, when you do get to the future, you will get to regret wasting this valuable time worrying.

When you catastrophize, ask yourself what evidence you have. Check in with another person. Take action if you can. Then be about the business of living right now.

Thursday, July 3, 2008

Cure or Healing?

We hope and pray for a cure. We explore alternative therapies. We surf the web and hit the library. We latch on to any tidbit we hear in the evening news that gives even the smallest ray of hope. We want our health back. We want to be healthy “like everybody else.” And we put our lives on hold while waiting for the cure.

Healing is different. Anyone can have it. You can have your disease and be healed at the same time. We are healed when we experience all the raw and painful emotions and let them go. We have a disease and decide to have a life too. Healing empowers us to take responsibility for our health, to value each person and each minute, and to treasure everything we have. Do we still hope and pray for a cure? You bet we do! But we make the most of our lives in the meantime.

Offered a choice between cure or healing, I’ll take healing every time!

Serenity Prayer
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Wednesday, July 2, 2008

The Friendship Ring

I have a ring that’s very special. It has my birthstone-a garnet. I bought the ring about two years after my diagnosis. I was still pretty sick, still on disability. The ring was only $30 but that was an extravagance for someone who was barely surviving. When I tried it on, I had an “ah-ha” moment.

The ring is a symbol. Every morning after my shower, I put the ring on. This is my daily renewal of my commitment to put my health first, to live the best life possible with this disease, and to make choices that build health rather than tear it down. I wear it on my right hand, my dominant hand. Every time I use that hand, I see the ring and remember.

What commitment will you make to yourself today?

Tuesday, July 1, 2008

Love Your Neighbor as Yourself

Before you can love your neighbor as yourself, you have to love YOU. You are not your illness, but it is part of who you are. Do you treat yourself with love? Or do you treat yourself like someone who deserves to be punished? If someone you really cared about had your disease, what would you expect of them? Is that what you expect of yourself? How would you treat them? Is that how you treat yourself? What would you say to them? What do you say to yourself?

Every day presents you with hundreds of choices. Some build health, some do not. For just one day, every time you are faced with a choice, pause and say to yourself, “I love myself therefore I choose…” You don’t have to believe it. Just do it. How do you feel at the end of the day? How will you feel at the end of a week?