Living with an invisible illness…

This is a longer post than I usually write, but through the years these have been some things I’ve wanted to say. So…thanks for taking the time to read!

Everyone has issues they have to deal with. Everyone.

Sometimes they’re obvious—and often when they are, people are willing to give someone a break…to understand when they have to change plans or when something goes wrong.

But some of us live with invisible illnesses or invisible disabilities, and those are harder…for everyone.

Everyone’s life is different, but I’d like to just share some musings from my life with one of those invisible disabilities—multiple sclerosis (MS). I was diagnosed with it in 1976, so that’s a lot of years with it…and while I’ve been very fortunate (and blessed) in my life, there are some things that I would like to share.

I’ve been able to do most of what I want—at least in some fashion—for most of those years. But if I’ve gotten too tired, too stressed, or too hot, all my plans may end up going out the window. Not because I want them to, but because I simply can’t do what I’d originally planned. I know that those changes may impact others, and I’m sorry about that. But unfortunately it’s not something I can do anything about—not if I value my own health.

And that brings up another point…fatigue. I understand that everyone gets tired. But what I call “MS fatigue” is different. It’s difficult to describe, because it’s not something that can be taken care of by a nap or by a few nights of really good sleep. It may feel more like trying to walk through thick jello with 50-pound weights on my legs. Or it may feel like my eyelids have weights on them and I just cannot keep them open. That fatigue may last for several days (or longer) or it may disappear in a day or two…suddenly. I never know.

Part of my daily schedule since 1976 includes a nap. Not necessarily to take care of the fatigue, but to give my body a chance to rejuvenate on a regular basis. I can skip a nap one day—but if I do, I pay for it the next several days. I may sleep as little as 30 minutes…or my nap may go a couple of hours. It all depends on how hard I’ve been pushing myself. And because the nap is so important to my health, it makes retreats and day-long meetings challenging. My choices during them are usually either eat lunch or take a nap. The nap wins…always. Unfortunately that means that I miss the fellowship and visiting that often goes on—and that’s something I really miss. I’m always delighted when the schedule is designed so that there is some quiet time after lunch for everyone. Then I don’t feel left out or feel like the odd one.

I try to be vigilant about being around people who might be sick, because I can’t afford to have a fever. Even one degree triggers some of my problems with MS…so when I do get sick, it’s often a balancing act between letting a fever help burn away whatever germs are causing the illness and trying to keep my body from getting too hot and kicking in an MS exacerbation.

Speaking of sickness…there are a few comments I’ve heard far too often and that are not at all helpful. Please don’t insist that the regimen your aunt or a friend or someone else followed is the one I should also follow. Through the years I have had doctors that I trust and work with—and believe me, through the years I have asked about various “treatments” that someone has shared. My doctors have been willing to investigate alternative therapies along with conventional medicines—and I trust them.

If you are religious, please don’t tell me “I know if you have enough faith, you’ll be healed.” Of all the comments that can be made, I think that’s one of the cruelest. For someone who is already struggling, this comment places the “fault” for not being healed on their supposed lack of faith…and that is just another burden no one needs to carry. Just as an aside, while I still deal with MS symptoms and issues, I do believe that I’ve been healed—I just haven’t been cured. From my perspective, there are several different aspects of healing—physical, mental, emotional, spiritual—and while I would love a physical healing, in my case I have found the other aspects to be more important.

I am appreciative when you let me know that you will be remembering me in thoughts and prayers. But don’t insist on making a public “spectacle” of praying over me. That’s embarrassing…and, for me, has little to do with your concern for me.

Remember the rest of the family. While I’m the one dealing specifically with the illness, it affects the rest of the family as well.

And one last thing…I am more than my illness. I am still me—someone who loves my husband and kids and grandkids, music, books, dogs, life. So please…let me be me.

Advertisements

It’s the start of a new year…

We have lots of possibilities ahead of us….and lots of choices to make.

We can continue down the same path we’ve been going, even though that doesn’t seem to be getting us anywhere we really want. We could take a deep breath and decide to try something new.

For starters, we could–all of us–be willing to admit that we might be wrong about some of our most cherished beliefs.

We could decide to truly listen to each other. I know that far too often, as I’m “listening,” I’m actually formulating my response to what I think someone is saying rather than listening to what they’re really saying. If I truly listen, I might discover that we have more in common than I think.

And that brings up another point. Rather than dividing ourselves into “us” and “them,” what if we consider that we’re all “us” and looking for common ground?

There may be times when we need to pull away from someone for our own mental health. But that doesn’t mean we have to demonize them. It means we are acknowledging our own needs and doing self-care.

We could be willing to look at the sacred writings of our chosen faith tradition with an eye towards understanding the context in which they were written. That would allow us to find those truths that are valid for our time without being bound by specifics that were written for a time and place far different from our own.

If even a few of us are willing to do that, we may be the first steps that start us moving toward a world at peace.

What if we said “I’m sorry”?

Apologizing is hard. I get that. I don’t particularly like having to apologize…

But what if we looked at apologizing as a spiritual practice? .

I think our pride gets in the way a lot of the time. We don’t like having to admit that we might have been wrong about something, especially if that “something” involves our belief systems.

But if someone has ever apologized to you and said “I’m sorry,” how did that make you feel? If you’re like me, it opened doors for reconciliation. It made me feel that they valued our relationship enough to do something that they found difficult. It took away a perception of arrogance.

So what if we–both personally and as churches–were more willing to say “I’m sorry”?

Does that have to mean saying that we were wrong about something? Sometimes. And sometimes that’s a difficult pill to swallow–but a necessary one. If we look back at our history (again, both individually and as churches and countries), there are a lot of times we have been wrong about something. When we’ve acknowledged that, we’ve been able to reconcile…to work on bringing wholeness and healing.

However, when we have stubbornly stood our ground, refusing to admit that something we might have done, said, or believed was wrong, we remain stuck in the past. There’s no opportunity for change.

So here’s a challenge for 2019…let’s put our egos to one side and view our relationships as more important than our egos. Let’s be willing to let go of those beliefs and actions from the past that we’ve hung onto, even though they continue to hurt others, and say “I’m sorry” so we can work on bringing wholeness and healing to a broken world.

I am Sorry Messages

If I were one of “the tired, the poor…”

I hear a lot of statements to the effect that people who want to emigrate to the US should do it legally…that there is no excuse for illegal entry. In a perfect world, I agree. But unfortunately, our world is not perfect.

Compared to many in the world, I live a life of privilege. I have had the privilege of a good education and been able to work at jobs that pay decently. I have a home, clothing, enough for my family to eat (and to spare), access to medical care…and I do not spend my days worrying about my children or grandchildren being targeted by gangs as drug runners or sex slaves—or dying from malnutrition. I do not worry about my home being shot up or about bombs going off in my street. I can drive around my town safely without worrying about IEDs or car bombs or random shootings (mostly, anyway).

I cannot imagine living in a place where that is not true.

I honestly do not know what I would do if I lived in a place with the opposite of those conditions. If it were just me, that would be one thing. But if there were any other option that I could see for my children and grandchildren, I think I would take it—legal or otherwise.

And for many of the world’s people, there is not a legal option. Either because of lack of education, lack of money, lack of access to government offices—or the corruption of those offices… If all I had was my feet—and the hope that there must be a better world somewhere—I think I would gather up what I could and start walking.

Yes, I think our immigration system needs to be overhauled. Yes, I think we need to do what we can to help stabilize governments where many of these folks are coming from.

But at the same time, I would hope that we would have some empathy for those who are trying to find safety and a better future for their children and grandchildren—and I would hope that we would read again…and be willing to live out…the poem by Emma Lazarus that is inscribed on the Statue of Liberty:Statue of Liberty seen from the Circle Line ferry, Manhattan, New York

Not like the brazen giant of Greek fame,
With conquering limbs astride from land to land;
Here at our sea-washed, sunset gates shall stand
A mighty woman with a torch, whose flame
Is the imprisoned lightning, and her name
MOTHER OF EXILES. From her beacon-hand
Glows world-wide welcome; her mild eyes command
The air-bridged harbor that twin cities frame.

“Keep, ancient lands, your storied pomp!” cries she
With silent lips. “Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore.
Send these, the homeless, tempest-tost to me,
I lift my lamp beside the golden door!”

Merry Christmas

joseph-mary-and-jesus

And so the day is here…the day that we’ve been looking forward to.

But it’s not the end; it’s the beginning. It’s a reminder that the journey is not finished…that we still have a long way to go before we are living in the peace that the angels came to proclaim.

On this day we celebrate one child born so long ago–a child who had no bed to lay in, born to parents who would find themselves fleeing to another land to escape violence.

As he grew, he challenged the status quo. He loved the unlovable…taught that all were of worth…brought healing and wholeness.

We might not be able to do all the things he did–but we can do a lot. We can look back in celebration to the birth…and forward to a time when we can celebrate a world living as he wanted us to:

“Then the King will say to those on his right, ‘Enter, you who are blessed by my Father! Take what’s coming to you in this kingdom. It’s been ready for you since the world’s foundation. And here’s why:

I was hungry and you fed me,
I was thirsty and you gave me a drink,
I was homeless and you gave me a room,
I was shivering and you gave me clothes,I was sick and you stopped to visit,
I was in prison and you came to me.’

“Then those ‘sheep’ are going to say, ‘Master, what are you talking about? When did we ever see you hungry and feed you, thirsty and give you a drink? And when did we ever see you sick or in prison and come to you?’ Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’

And so…as we celebrate the birth of this Jesus, let us live Christmas all year.

Joy

Advent 4

On this last Sunday of Advent, we light the candle of joy.

What is joy?

Perhaps we should start out by saying what it is not. Joy is not necessarily happiness. Happiness can be fleeting, dependent on events happening in our lives–or the lives of our loved ones. If circumstances change, happiness may disappear.

But joy…joy is an emotion that comes from deep in our heart. We can find joy even in the most difficult of life circumstances…even when common sense says we should be completely down in the dumps.

So what makes the difference?

Joy may include happiness, but it goes deeper. We have joy when we know we have a firm foundation we can build our lives on–someone we can trust to always be with us through both good and bad times…someone who loves us, no matter what.

Joy acknowledges that life is not always easy, but it also knows that we are never alone, even when it may feel like we’ve been abandoned. Our human family, our friends may turn away from us–but the One whose birth we are preparing to celebrate never does.

I’m reminded of one of my favorite stories (and movies) this time of year–Charles Dickens’ A Christmas Carol. The Cratchit family lacks much of the “things” that we tend to think are necessary to find happiness, and also are dealing with the illness of the youngest child–and yet when they are preparing for their Christmas dinner, Bob Cratchit (the patriarch of the family) is still able to offer a toast of thanks and gratefulness for what they have…the love of family. They have joy.

And so…as we light this candle of joy, my wish, my blessing for each of you is this quote from Tiny Tim: “God bless us, every one!” And may you be blessed with true joy, not just this day but throughout the year.

 

Love

Adventskranz 3. Advent

Today we lit the third candle of Advent–the candle of love.

What is love?

There are many ways to define it. I remember as a child enjoying the Peanuts definition – “Love is a warm puppy.” But is that all there is to it?

English can be a challenging language because many times, we only have one word to identify multiple emotions. That’s true of “love.”

When Prince Charles and Princess Diana held their first news conference so many years ago, when someone asked Charles if he was in love with her, he replied “Whatever in love means.” That did not bode well for their marriage–but there is a lot of truth in his statement.

We love ice cream…if you’re a woman, you may love a particular dress…we love the weather…or a sports team…or our spouse…our children…

Do we really know what love is?

The One whose birth we are preparing for came to show us true love…a love so strong that he was willing to give his life for others. Occasionally we see that in other human beings around us. Unfortunately, far too often we settle for an “easy” definition.

But perhaps the best definition–and the challenge–of living in love can be found in a verse often used during weddings. But it’s a good challenge for each of us as we continue our preparation for celebrating the baby who came 2000 years ago–and whose coming we look forward to now:

What if I could speak all languages of humans and of angels? If I did not love others, I would be nothing more than a noisy gong or a clanging cymbal.

What if I gave away all that I owned and let myself be burned alive? I would gain nothing, unless I loved others.

Love is kind and patient, never jealous, boastful, proud, or rude.

Love isn’t selfish or quick tempered.

It doesn’t keep a record of wrongs that others do.

Love rejoices in the truth, but not in evil.

Love is always supportive, loyal, hopeful, and trusting.

Love never fails!