Friday, October 31, 2014

A Scary Scooter Story


This is a scary story about fear and dread.  No, it's not another Halloween story.  It's an adventure story.  A silly story, really.

Last weekend, The Husband treated me to a weekend at Rehoboth Beach for the Sea Witch festival.
Sea Witch Balloon
"Oh dear, is the witch that scary?" Nah, the Sea Witch is actually the name of a really fast clipper ship that navigated Delaware waters, and a clever woman developed a way to bring people to the shore after Labor Day by blending this nautical theme and Halloween into a huge festival.   But there is a really scary Sea Witch balloon in the costume parade.

What was scary about this story is that I chose to take my scooter.  You see, we used to walk a lot.  For years, we did weekly Volksmarches, organized fun walks of 5-10k.  We went all over the US for conventions, we walked state capitals, saw amazing out-of-the way places, met interesting people.  We racked up miles and events, and even popped up to Toronto for a weekend to do two walks.  As I got weaker, however, we switched from 10k to 5k walks.  Then I developed foot drop/foot flop, increasing fatigue, and loss of coordination.  We went on our last Volksmarch two years before I went on disability.

The loss of my ability to Volksmarch was hardest on The Husband.  It was so fun and meaningful to him. So, knowing that some Volksmarches are wheelchair friendly, I suggested that we do the Sea Witch Volksmarch, but I would use my scooter.

Here's where the scary part comes in.  I've never used my scooter on a Volksmarch before.  I know
from friends that "accessible" can be a misleading term, so I was concerned about the route.  What if it took us on the beach, what if winds had created little dunes in the parking lot?
All that chatter that the brain generates to derail me was in high gear.

The last time I used my scooter for a fundraiser on a flat track, it was horrible.  The cement path had deep ruts between the slabs that led to bone crushing bumps.  I was so sore afterwards, and yet it was "accessible."

Also, I used my scooter once, and fell over.  But I ignored the manufacturers guidelines (no passengers) and had a step-grandchild with me (who just couldn't walk any more).  He decided to pull on the steering bar sending us into a sharp acceleration and a tight turn on a slight hill and we flipped over.  So the specter of falling over remained with me.  Plus I had never stress-tested its battery.  What will happen if it runs out of juice earlier than anticipated?  Will the battery hold its charge even if it's cold?

All sorts of other doomsday scenarios kept running through my mind, just because this was something new.  "Just something new" is the same as "The Unknown."  What's more scary than the unknown?

Of course, the outcome of this story is predictable to you, I'm sure.  Everything worked well.  There were a few problems - no ramp from the starting area to the boardwalk meant we had to figure out an alternative route, which was not marked.  People with strollers insist they have the right of way and are free to come to a dead stop with no warning.  Large puddles blocked some curb cuts; I had to ride out on the street when sidewalks were not too friendly. Crossing streets was frightening, but once I got The Husband to understand that I was scared, he was helpful in getting me across.  I successfully completed a 5k Volksmarch!

I'm pleased that assistive technology enabled me to participate in an activity that I had to give up long ago.  Now, it's not so scary.  And I have a much greater appreciation and respect for people who use wheelchairs and scooters in the real world.  This experience will help me be a better disability advocate, I think.

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Thursday, October 16, 2014

Beyond Bone Tired

After my last post, The Biscuit Week, about getting hit with bad fatigue, I discovered an article posted to the On Being website that I want to discuss.

Because I've been dealing with bone-crushing fatigue for years, I have studied how to get help when needed.  I've even lectured on the subject.  Step one: determine what you need. Step Two:  ASK.  This is drastically oversimplified, but you get the idea. Asking for help is hard, often because I don't know what I need. If I do, I usually can't explain.
When I'm that tired, I forget everything I've learned.

So I was very interested in this article by Courtney E. Martin called "Bone Tired and Ready to Be Bossed Around."  

Courtney notes that when people experience bone-crushing fatigue (like any new parent, perhaps), it's hard to ask for help:
Because there is a place beyond tired — bone tired — where you don’t even have the wherewithal to ask for what you need. When you’re in this state of mind, kind humans offer up their time and talent to you, but somehow you can’t receive it. You’re in a fog of exhaustion where you can only see an arms length ahead: reply to this email, return this call, drink this coffee, do this dish, survive, barely. 
Courtney goes on to say that asking for help "... requires energy that the truly down-and-out — whether grieving or overwhelmed or depressed — just don’t have." 

The author suggests that sometimes she just needs someone to step in and do something for her rather than ask her what she needs.  She's ready to be bossed around. 

Yeah, I do get that way.  Sometimes I just need someone else to make a decision about what time to leave, where to sit, what to eat for dinner.  BUT, I really, really don't like to give up control.  Like when I decided to start eating healthier meals, but was tired so asked the roommate to plan dinner for us one night. We had Burger King Whoppers with fries. At least Burger King has the best fries.  But that's not the point...  

I have to ask myself,
"Would I really be open to receive that help unconditionally?"  

Even if that help involves night after night of fried meat on a white bun? 

At the end of her article (which I recommend you read for yourself), the author wants to work toward being more pro-active in helping where she sees a need. She wants to step it up and be the person who makes the decisions for someone in this confused state.  I'm not sure how I would react to be "bossed around" even if it is in my best interest.  

What do you think? Are you willing to receive help unconditionally?  

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#multiplesclerosis

Tuesday, October 14, 2014

The Biscuit Week

Wow, the MS fatigue is really bad right now, and I’m blaming last week.

What would seem like a busy week for anybody was a significantly challenging week for me. On Monday, I had a medical appointment. On Tuesday, I spent a few hours with an architect reviewing plans for a sunroom. On Wednesday, another medical appointment. On Thursday, a discussion group in the evening. On Friday morning, a two-hour home repair for women class. On Saturday, a two-hour study hall.

For most people, this may seem like just a full week. But for me, this was a week from hell. 

Each of these events individually should not require a lot of time or energy. But for me, each of these events required a significant amount of energy, and my schedule did not allow for recharging time in between the events.  Yes, I need at least a full day to recharge from most events.

I broke my own rules for energy management. And now I'm paying.  So, what about the biscuits?

On Saturday, I discovered that there was no food in the refrigerator. No edible food that is. I had absolutely no energy to go out; I had no energy to figure out whom to call for help. The Husband was visiting family and would not be home that day.

As I sat in a chair feeling sorry for myself, I was reminded of a time when I had just moved into an apartment in Germany, had no money because my per diem had not yet arrived, and was without food. The previous tenants left behind a box of Bisquick. I discovered that I could make biscuits with Bisquick and water. I lived off of biscuits for two weeks. 


So I summoned up a little energy to make a batch of drop biscuits for lunch and dinner.  Although not a healthy diet, those biscuits got me through the day. With all the discussion about a healthy diet for people with multiple sclerosis, there are times when I’m just trying to get food in my stomach.

Now I have groceries to get me through the week; but, this "biscuit week" made me realize that menu planning needs to be a higher priority. And I have to do a better job of selecting activities to honor my energy limitations.  

In the meantime, thank you, Bisquick.


#multiple sclerosis fatigue

Sunday, September 28, 2014

MS is a Global Disease

After a sojourn to other topics on my social media outlets (complaining about the NFL's wimpy response to domestic violence, getting inspiration from Scotland's vote on independence, and being disappointed that the Asian Games in South Korea would not allow Muslim women to play basketball wearing their headscarves), I feel that I will go back to writing about Multiple Sclerosis for a little while.

It's not that those other topics are not important; to the contrary, they are very important.
Too important.  Globally important.  I like being an informed citizen of the globe, I feel that's important.  It makes me feel less lonely, but at the same time, it makes me feel even more helpless.  I can't fix things in my own backyard, so how can I fix things in South Korea?  

Well, maybe I don't have to.  Maybe I can just listen, and I can bear witness to inequalities. I can share the stories.  

MS is a global disease, and the 2.3 million people in the world (2013) with MS probably have similar stories to mine, similar problems, similar accomplishments, similar fears. But we don't share the same access to resources, doctors, medications.  

The MS International Foundation's 2013 Atlas of MS found that there are inequalities of access to disease modifying therapies between high-income and low-income countries.  One in five countries has no MS support organization.  There are more interesting facts in the Atlas of MS Database, and I suggest you check it out at http://www.atlasofms.org/.    

Globally, people with MS share the same disease, but we experience it differently. We don't all share the same resources or support, but probably share the same fears.  Regardless, we all share one global story.  

Let's not be afraid to be a global citizen. Just start by listening.

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Saturday, September 20, 2014

I'd Rather Be a Bimbo

Before the recent NFL domestic abuse problems were uncovered, I had already decided to limit watching NFL games.  I still enjoy the game, but I just got sick of all the commercials.  The play stops for booth reviews and measurements and lots more commercials.  Then there's the bone-crunching sounds from players smashing into each other.  And then more commercials.  Then pans of mostly naked women shaking pom-poms on the sidelines.  Crunch, commercials, repeat.  Superbowl? Who cares about the game, we want to watch the commercials!

Now with the NFL's lame plan to develop decent behavior rules by the END of this season, I'm certain that it's time to switch loyalties to soccer.  It should not take months to implement rules to stop beating women.  I can write up a process in a minute.  "Don't beat up anyone (including women) or you're fired." 

The NFL need look no further than Major League Soccer, which has instituted an outreach program called MLS WORKS, and a public service message called "Don't Cross the Line."  They challenge everyone to take this pledge:

"I pledge to treat others with dignity and respect and will not tolerate discrimination, bias, prejudice or harassment of any kind."

Even more appealing to me is that in soccer there are 45+ minutes of uninterrupted constant action, then halftime commercials, then 45+ minutes of action in the second half. 

Oh yes, here's an explanation of this post's title:  
The Philadelphia Union Major League Soccer Team has a corporate sponsor, "Bimbo," an international Mexican-owned baking company. You might be more familiar with some of their brands:  Sara Lee, POM, Entenmann's, or Arnold. It makes an awkward t-shirt in this country, unfortunately, and I'm sure they are not a perfect company. But I'd rather be a Bimbo and support Major League Soccer, than sit through another season of NFL commercial fests and listen to another NFL player beating up someone and getting slapped on the wrist.

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Friday, September 19, 2014

Let Us Dwell on the Distance We Have Traveled

Scotland has voted to stay in the United Kingdom.  As I was reading the reports from BBC, I found some meaningful quotes that I want to share.  I think the world can learn from this event.  I know I can.

From Alistair Darling, who led the winning Better Together (against independence) movement, "As we celebrate, let us also listen."

From First Minister Alex Salmond, who led the movement to declare independence from UK, "Today of all days as we bring Scotland together, let us not dwell on the distance we have fallen short, let us dwell on the distance we have traveled..."

That last quote applies to my personal life.  As I tried to scrub the kitchen floor yesterday, I simply became so exhausted that I sat in the corner and began to cry.  I was only 1/4 of the way done.  I could only dwell on the distance I have fallen short in so many areas of my life, all the things I am no longer able to do.  Well today, I am going to dwell on the distance I have traveled instead.

Thank you, Scotland, for showing the world a better way to live together, and thank you Mr. Alex Salmond for inspiring me to shift my focus.

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Sunday, September 14, 2014

Time to "Weigh In" on the MS Diet Discussion

The MS Connection Blog recently posted from 2014 Joint ACTRIMS-ECTRIMS conference about a lecture that certain diets have shown to make no difference when it comes to developing MS.  Go to their post at "Is diet a risk factor for MS

Now that an MS diet has risen to the attention of such a large collection of Multiple Sclerosis experts from all over the world, I decided to share my thoughts.

Over the years, I've listened to people insisting that there must be a diet (way of eating) for MS.  I have heard people claim that they've cured their MS or significantly reduced their symptoms (no longer need a wheelchair, can see again, tingling gone, e.g.) by adopting certain eating habits.  I find it interesting, but ignore most of it.  Here's why:

In 1986, before I was diagnosed with MS, I had an attack of severe vertigo and dizziness.  After about two months without changing my eating habits, I recovered.  An unfortunate side effect, though, was constant fatigue and a
tremor.  Someone that I trusted with a medical background told me that I must have chronic low-blood sugar (LBS), which is often triggered from trauma such as an extended illness.  Having no access to broader research sources (the internet was still developing and not yet in homes), I believed this person.

The LBS treatment was a high-protein, low-carbohydrate diet. Although low blood sugar was never diagnosed in me, I found a book by a man who explained how he cured his fatigue with this diet. He explained that doctors don't understand LBS and there's no good test for it. Being so tired and trying to work full-time, I grasped at anything.


So for years, I ate a snack every two hours composed of foods low in sugar, no added sugar, minimal bread products (low gluten), high protein, low carbs. Things seem to be okay, but I would get episodes of severe fatigue and insist that my blood sugar had dropped and I needed to get food.  The right food.  I'd feel fatigue wash over me at times, and criticize myself for not eating correctly. 

So I added high-doses of vitamin B-12 (under a physician's guidance).  Other people swore that it helped their fatigue, but it didn't help mine.  

I added exercise, long walks, ballroom dancing.  Other people swore that it helped their fatigue, but it didn't help mine.

In the following years, I experienced episodes of blindness, pins-and-needles from the waist down, severe muscle spasms.  All cleared up within two months.

Then I was diagnosed with MS.  

In hindsight, I now know that my fatigue episodes were not caused by eating the wrong foods. With improved testing, I now know that I do not have low blood sugar. Now I try to eat a healthy diet using the Mayo Clinic's guidelines, and manage fatigue with energy conservation techniques, mindfulness meditation, and naps. I exercise in small, energy-conserving chunks. I avoid energy vampires (people who suck the energy out of me) and noisy crowds.    
"Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS."
We each experience MS differently. Each person has different symptoms, reacts differently to the disease modifying drugs.  Relapses come and go in different ways.  Healthy diets come in all shapes and sizes (plate or pyramid). Just as there is no 'one-perfect drug' for MS, I believe there is no 'one-perfect diet' for MS.  But I am one person, and I react one way.  If a certain diet or pill works for you, stick with it.  But don't be surprised if it doesn't work the same for me.

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Read about my long road to diagnosis here

Friday, July 4, 2014

Happy Independence Day!


On this fourth of July, 2014, I'm sending up a flare of hope that we will soon declare independence from Multiple Sclerosis.  Be safe and well this holiday!

Sunday, June 15, 2014

And They're Off!

Fledgling Eastern Bluebird
The Eastern Bluebirds began leaving the nest box one-by-one this morning.  

It takes a lot of courage to leave the warmth and protection of the home where you were born, then to squeeze out of a tiny hole and leap into the brightness and hope instinct kicks in and you fly into the big world.  

We are still talking about the Bluebirds, right?  

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Saturday, June 14, 2014

Fledge Watch

Although I don't blog much (I'll probably post the reason why in the future), I still remember that some of you love the bird posts.  Status update:
Mama and Papa watching over the nest



We have five baby Eastern Bluebirds in our backyard nestbox about to fledge.  Just like any grandparent (or so I've been told), I love to show off baby pictures.  These photos were obtained carefully, using the protocols outlined in Cornell's Nestwatch Citizen Science Project, which is why they are a little fuzzy.  I didn't stay long enough to ensure focus or composition, just wanted to check the status of the birds as quickly as I could with little disturbance.

Beautiful eggs, May 23
New hatchlings June 1

Fuzzy, napping things on June 9




They should be ready to leave the nest in the next few days.

Of course once they leave, they never write, never call, never come back to visit, they just go out into the world without looking back.

Good for them!




Friday, May 30, 2014

Thank You, Healthline, For Selecting Mine as One of the Best MS Blogs for 2014

The Best MS Blogs of 2014
Healthline

Thank you, Healthline.com, for selecting A Short in the Cord as one of the Best MS Blogs of 2014.  

I'm flattered by the description:
"Joan Wheeler is the woman behind A Short in the Cord. She was diagnosed with MS 27 years ago, and her blog chronicles her experiences with relapsing-remitting MS. Wheeler recognizes the challenges that come with living with MS, but also maintains that staying active and aware is key to health.
Wheeler is a disability awareness advocate, and she’s captain of the MS Walk Team Wheeler’s Wobblers. Their tagline is “Wheelers wobble but don’t fall down, thanks to your support.” Wheeler has contributed to the MS community for a long time, and her posts are worth a read."
 There are a lot of good options, and I'm honored that my blog was one of the chosen. This year, they have selected more blogs, many from new bloggers, and they are all worth a look. Be sure to check out these other great blogs at http://www.healthline.com/health-slideshow/best-multiple-sclerosis-blogs

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Wednesday, May 21, 2014

Final Results from Wheeler's Wobblers MS Walks

Anne raised over $500!

The results are in:  Between two walks, one in Wilmington and one in Newark, the 2014 Wheeler's Wobblers MS Walk Team raised $12, 247.63! Way to wobble!

For our sixth year, we had 40 walkers, 3 babies, 3 children, and 1 dog.  We had teammates from Delaware, Pennsylvania, and Maryland, including Pittsburgh and Baltimore.

The Pittsburgh Connection - Sonia's family
The Baltimore Connection - Tedd's family (my step-daughters)



Some walked...
...some rolled
...some were pushed


... and some slept.

Rev. Andrew with 3-week old Micah
Susan and Ginger

We had three teammates with MS, one with ataxia, one minister still on paternity leave, and

politicians who are working in government to make our lives better.
Teammate Congressman Earl Jacques, Joan, and US Senator Chris Coons.  I'm glad I voted for these guys!
With Congressman Paul Baumbach



In Newark, we had our own neighborhood cheering section...
Newark neighborhood

Sophie cheering us on.












...and one fighting Blue Hen mascot.  
Newark Team with YoUDee 

Thank you to everyone who came out, who donated, and who cheered.  We don't fall down thanks to your support!  And now for our official team photos:

Wilmington Team

Newark Team


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Wednesday, April 30, 2014

A Wobblers' Encore This Saturday, May 3, in Newark, Delaware

The MS Walk in Wilmington (Delaware) a few weeks ago was so much fun, some of us decided to do it again in Newark this Saturday, 3 May.  You are invited to join us for a leisurely stroll through some of Newark's neighborhoods and parks for a good cause during the Newark MS Walk.

Start: Buffalo Wild Wings
100 South College Avenue (previously known as Elkton Road)
Registration begins inside Buffalo Wild Wings at 9:00
Walk starts at 10:00 am 

Because we are a smaller group (last year's team photo is shown on the right), the Wobblers won't have a big sign, tent, or registration table like we did in Wilmington.  Go to the normal registration area to check in, and be sure your registration form says you are with the Wheeler's Wobblers.  And don't forget your team t-shirt.

To register or donate, go to our team's Newark walk page:
http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?team_id=392648&pg=team&fr_id=23384

Wobble on!

Saturday, April 19, 2014

We Don't Fall Down Because of Your Support

Wheeler's Wobblers MS Walk Team report from the MS Walk Wilmington, 12 April 2014:

The weather was beautiful for a stroll along the Wilmington Riverfront, and there were lots of smiling people.  The Wheeler's Wobblers team had about 30 walkers, and raised a new team high of $10,437!



Our team motto is "Wheeler's Wobble but we don't fall down, thanks to your support," and this year we had a lot of support from people like you.  THANK YOU!

This money goes toward important research for finding a reason for the disease (and then a cure), improved disease modifying therapies, and programs to help people with the disease.  I look forward to the day when these fundraising walks will no longer be necessary.  But in the meantime, we will continue to wobble on.

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Monday, March 24, 2014

Want to Wish Me a Very Happy Birthday?

In honor of my upcoming 55th birthday
(Thursday), please consider making a donation to my Multiple Sclerosis fundraising efforts.  For the fifth year in a row, the Wheeler's Wobblers MS Walk Team will participate in the Wilmington, DE, MS Walk (April 12th) to raise money for research and programs.  Our team's fundraising goal is $5,000.  Ah, the power of five.  I wonder if we can get 5 people to donate $55?

To make a tax-deductible contribution via credit card, go to MY WALK PAGE and select "Donate to Joan."  Let me know if you prefer to donate by check, and I'll send you a self-addressed stamped envelope.

Any donation of any amount will be greatly appreciated. Even small donations make a difference.

Thank you and Wobble on!


Wheeler's Wobble but we don't fall down thanks to YOUR support!
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Thursday, March 6, 2014

Why I Walk

Recently, the MS Society asked me about my motivation for participation in the yearly MS Walk fundraisers.  They asked for a quote about “Why I Walk.”

At first, I struggled to answer because it was a high-fatigue day and I was barely able to get around the house and I wanted to be left alone.  I didn't have the energy to think about forming a team, doing fundraising, or recruiting walkers.  So really, why DO I organize a team and participate in the MS Walk, especially when every year in post-walk exhaustion I mutter "I'm not doing this again"?

Then I looked at the Wheeler’s Wobblers T-shirt, and the long list of sponsors
on the back.  I remembered how much fun it was when businesses asked me how they can help.  I looked at the pictures of our past teams, and remembered how people still speak about the fun they had at the last walk.  I remembered that these walks gave me the opportunity to meet my local Congressman (Earl Jaques (D-Glasgow) who is now on my team) and people from all over northern Delaware, people I would not have met otherwise.

So I wrote this:
"As a person with MS, it is easy to feel isolated.  Participating in the MS Walks gives me an opportunity to connect with others while doing something fun, and create lasting relationships in the process."  
I thought it sounded good at the time and would satisfy the request for a quote, then I’d go back to hibernating.

But this week, I realized how very, very, very true that statement is.  For a recent MS Awareness Week fundraiser for my walk team, I reserved a table at Ruby Tuesday, then put out the word that I would be there so come join me.  I was thrilled that eight people took me up on that offer.  As people from various parts of my life (church, book group, MS society, physical therapy) were talking to each other, I looked around and noticed that everyone was getting along and engaging in interesting conversations.  We might not have raised a huge bucket of money that night, but we had fun while creating lasting relationships. 

And that is why I walk.

If you want to join Wheeler’s Wobblers MS Walk team in Wilmington, Delaware, on April 12th, OR if you would like to support us with a tax-deductible donation, just click here:


 Our team motto is 
“Wheelers wobble but we don’t fall down thanks to YOUR support!”

Tuesday, March 4, 2014

Happy MS Awareness Week




Just in case you didn't know, this is MS Awareness Week.  There, now you are aware!

The Delaware Chapter has a week of fundraisers at local restaurants, and today is Ruby Tuesday's day.  If you go anytime today, to any of the Delaware Ruby Tuesday restaurants, and give your server this coupon, RT will donate 20% of your check to the MS cause.  And the Wheeler's Wobblers MS Walk Team gets the credit.

I reserved a table at the Bear, Delaware, Ruby Tuesday for 6:00 pm, and you are welcome to join me.  Hope to see you soon. Wobble On!

http://www.nationalmssociety.org/NationalMSSociety/media/Delaware/ruby-tues-flyer.pdf


Thursday, January 16, 2014

Martin Luther King Jr. Day of Service: MSAA Shares Ways to Show Support This Monday




Martin Luther King, Jr. Day of Service - January 20th, 2014
Ways to Give Visit mymsaa.org Tweet This Donate
What are your plans for this Monday?Join us for MLK Day of Service this 1/20/14
In 1994, Congress declared the Martin Luther King Jr. holiday as a day of service.  Twenty years later, Americans all across the country still honor King's memory by engaging in acts of service that benefit their fellow community members. 
Rather than taking the day off this Monday, January 20th, we're encouraging others to use this day to help improve lives for the multiple sclerosis community in the spirit of service.
Learn more about how you can help improve lives
Short on time or money?Join us
You'll find many different ways to help, and not all of them require a big budget or even a flexible schedule. In fact, even with minimal time or money, you can truly make a difference and help improve someone's life.
Ways to volunteer or serve:
5. Consciously send positive, healing thoughts to someone
6. Perform random acts of kindness - this can be as simple as brightening the day for an elderly person you know

Join us for Martin Luther King Jr. Day of Service

In what ways, big or small, do you plan to serve or volunteer this Monday?
Tell us on Facebook or learn more about ways you can help. 


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