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.

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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.

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!”

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!

 

Hope

 

Yesterday there were two candles to light…the first candle of Hanukkah and the first Advent candle, the candle of hope.

In some ways these two might not seem to have anything in common. And we might wonder what they have to do with hope.

The typical definition of hope is kind of shallow. We might say “I hope it doesn’t rain” or “I hope I can see that movie”…or “I hope…[something else].” That’s short-term or wishful thinking and doesn’t require much of anything from us.

But there are some other ways of defining hope that are more meaningful in this season of advent.

Hope can be seen as an optimistic state of mind based on expecting positive outcomes regardless of what is going on in the world around. It can mean to expect with confidence or to cherish an idea with anticipation.

In the Christian tradition, it can be seen as faith directed toward the future. It is “the conviction of things not seen (Hebrews 11:1).

Hanukkah reminds us of hope in a God who knows our needs and provides what is needed–in this case, eight days of oil which allowed the Jews to rededicate the Temple that had been desecrated under the rule of Antiochus Epiphanes. There was only one day’s worth of oil available to light the candelabra and begin the process of rededication–but it burned for eight days.

Advent points Christians toward the celebration of the presence of God in the world through Jesus…a celebration of the time he came 2000 years ago but also a looking forward to his coming again.

Both of these things seem impossible–and yet they happened.

And because they happened, we can acknowledge hope as more than just wishing that something will turn out well. We celebrate hope as a faith that looks toward the future with confidence…that God is, and that God continues to care for all of God’s creation.

 

Advent musings

As we are preparing to go into the season of Advent…and beginning our preparations for Christmas…I got to thinking about what we know about Jesus.

He was born into an occupied country—a country wracked by violence where one never knew from one day to the next whether they would be alive or dead…and where safety for the occupied community was really a mirage.

Besides the occupiers, his country was also torn by violence between competing groups who had very different opinions on how to deal with the governing authorities. Some wanted to just get along. Others wanted the invaders out—and were willing to use every method they knew to get them gone…along with those who had collaborated with them.

There was a large gap between the “haves” and the “have nots.” Some were secure in knowing they had a place to live, clothes to wear, and enough food to eat. Many, many more weren’t sure where their next meal would be coming from.

At various times, people fled their country. Some were running from the violence that surrounded them. Others were hoping somehow to find a better life. Jesus’ own family fled the violence and became refugees in another country.

As an adult, back in his own country, Jesus continued to face challenges. Violence, corruption in government and religion, fear, hatred of the other…

And yet…he did otherwise. He ate with corrupt religious leaders. He healed family members of the oppressors. He visited with those who were “other.” He talked about love…and challenged his followers to truly follow his example of all-embracing love, hope, and healing.

So this year…while I love my traditional and beautiful nativity scenes, I also want to look at ones that make me uncomfortable…that remind me that the One I will be celebrating did not live an easy life–and calls me to make sometimes difficult choices. I want to be reminded that when I look into the faces of “the other,” I am called to see the face of Jesus.

Advent is a time of preparation for the celebration of when Jesus came 2000 years ago…and a time of preparation for when Jesus will come again…and I want to be reminded again and again of what he said–that when I bring ministry (food, water, shelter, affirmation) to any of God’s children, I am doing it to and for him.

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How long?

Another mass shooting….

Another round of thoughts and prayers….

Another series of “conversations” about whether or not changes in gun laws would have saved lives….

Another insistence that a “good guy” with a gun could have stopped the shooting…

Another time of red flags missed…

But people are still dead.

What should have been a time of peaceful worship…of celebration of the naming of a child…is destroyed in a rain of bullets and hate.

There will be more vigils….

And we will say “never again”….

But deep in our hearts we know it will happen again…because we are too in love with our guns to make any changes. Too in love with our ideas of “freedom” to work together to make our schools and places of worship safe for everyone. Too enamored with our freedom of speech to acknowledge that words of hatred and division have an impact.

How long?

And how many more will have to die?

How long…?