Identity, Humor, Intelligence, & Chronic Illness

By Stacie Prada

Living with a chronic illness that progresses and has no cure has made me hyper aware of how I view myself and others. Faced with potential physical disability and cognitive decline, I realized how much of my identity was based on what I can do, say and accomplish.

I remember my early years navigating acknowledging I had multiple sclerosis. The long list of symptoms and conditions that can result from MS lesions is frightening. Cognitive changes scared me. They can affect a person professionally, compromise analytical and problem-solving skills, and end a career. They often change personal relationships, and I wondered if they would change how I interact with people. 

These scared me, and in that swirling jumble of symptoms, possibilities and impacts, I worried what it might mean for my personality.  I worried it would change how people see me and how I see myself. 

Would I lose my sense of humor and intelligence? Would my personality become something different? Would I like who I become?

Identity

It turns out I am becoming more serious and intentional, and I’m also keeping my quick-thoughts and silliness. MS integrated into my identity.  It didn’t displace it. MS is a big part of my life, but so are all of the other aspects of my being. 

I haven’t lost my sense of humor, but I have become clearer about why things make me laugh. Something I experience or observe may make me chuckle to myself, and whether I share it with the people around me depends on the situation and relationship. Anecdotes and observations on living with a chronic illness can ring true and boost connection with some, and they can make others uncomfortable. Sometimes a modification to how it’s told can make it relatable, and other times it’s worth waiting to share with a person who already understands.

Being silly can sometimes be seen as immature or flippant. Growing older, gaining confidence and learning every day helps me share my thoughts more and worry less about what people will think. If someone interprets me differently than I’d like, I’ve gotten better about not owning their opinion.

I’ve watched friends experience physical and cognitive impacts due to illness and aging. Searching for the right word to express their thoughts can take longer, but it’s also because the right word matters to them.

Intelligence is not the ability to retrieve a word or speak quickly. It’s understandable yet misguided to presume communication equals comprehension and intelligence. I’ve learned through the years and many friends that the ability to communicate or retrieve words have no relationship to a person’s intelligence or understanding of things.

When a person takes their time to find the word that accurately captures what they want to convey, I’m often rewarded with a perspective and insight I hadn’t anticipated. It encourages me to honor the person and the conversation by staying quiet, interested and unhurried.

Curiosity and not rushing a conversation are crucial. Not finishing a sentence when they’re searching for the word reaps rewards. I may think I know what they’re going to say, but often they surprise me with more depth, cleverness and humor than I’d anticipated.

If I could talk to the newly diagnosed me from 13 years ago, I would tell her this:
Living with chronic illness affects everything, but MS will integrate into your identity in a way that matches your personality. Your intelligence, humor and identity will evolve, but they will be what you make them. You’ll gain insight into a world that teaches you about others and yourself. The experience will make clear who you are and who you want to be in this life. Through all of it, you’ll still be you.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Funny, Not Funny

By Lauren Kovacs

OK so there is nothing funny about a chronic illness. Injecting a little bit of humor can go along the way. Don’t force it.

Yeah, the fire breathing dragon on my path to a decent night’s sleep is not funny. His blow torch breath on my arm for hours kinda sucks. But, maybe he can get a part on Game of Thrones instead of being part of my nightly nerve pain.

So my right leg identifies as a tree log. A very heavy log. It is my Barbie Leg. The Floppy Fish Foot is a special added MS gift. 

If I can’t manually bend Barbie Leg, Floppy Fish Foot steps up and makes movement extra hard. It gives 110%. It really knows how to increase the difficulty.

I left many things behind when my boys became teens. Not so much in reality. I load my van for a trip with as much stuff as when my boys were little. Only now my bed rail has replaced the pack and play. My wheelchair replaced the stroller and protein powder pushed out the baby food.

Ah, to be young again. Wait… my special fork replaced baby spoons and my water bottle with a straw replaced sippy cups. At least I am accustomed to needing lots of stuff.

Try and find a wee bit of humor in things. Not everything is funny though. I spend many moments in frustration tears. Take something you deal with and turn it around. The back of my thighs are starting to burn a bit.  Nothing big or painful yet. Getting ready to turn that around with humor.

Yes, my right leg is spastic, but I turned it into something silly. I can laugh most of the time. Plus I am finding people understand a Barbie leg better then spasticity. Make your descriptions as simple as possible for everyone. Your silly analogies can clarify things for people.

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Add A Little Humor

Throughout life there are moments that call for certain emotions and behaviors as a way to react and cope with things. There are times that call for seriousness and focus, sadness, or frustration. But there are also times that call for humor and lightheartedness. These elements can help keep you going sometimes, especially through challenging periods. Seeking out humor is a task everyone should try daily.

Some of us are fortunate to have naturally funny and humorous characters as part of our day to day lives. My husband is one of these people and can make me laugh-especially in times where I don’t want to be amused, haha. He has a knack for it, a talent that comes so easy to find humor in almost any situation. I’m grateful for the humor he adds to my life each day, even when it’s not wanted. He knows in those moments where I become too serious or overly stressed, I can probably use a good laugh to break through nerves and tensions. And he’s usually right.

I know we can’t have humor and laughter 24/7, but I think it’s important to make room for it whenever possible. There are too many obstacles, traumas and tragedies that plague the world. Be it illness, loss, or some other type of devastation—we don’t know what the next moment will bring. But amidst this we can find light, hope, and humor to manage our feelings about what we can’t control. If humor can be a way to help cope with the unimaginable, then bring on the laughs. Because at the end of the day if we can control our reactions and emotions, why not add humor into the mix.

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5 Years of Camaraderie and Community

Living with a chronic condition — such as multiple sclerosis — can feel isolating at times, particularly during a pandemic. Especially in this last year and half, we have all learned the value of connection with other people. One way that people affected by MS have managed to connect and create a sense of community for the last five years is through MSAA’s online peer forum, My MSAA Community.

My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows users to post a question and get answers from members of the forum, share their MS journey, connect with others, and contribute to ongoing conversations.

For the past five years, members of the MS community have come to this online forum looking for advice and connection from someone living a similar experience. With more than 6,500 members and more than 16,000 posts, you can find:

  • Coping strategies for difficult MS symptoms
  • Tips on how to talk to your healthcare team
  • Discussion about different therapy options
  • Support for some of the more challenging aspects of living with MS
  • Fun stories, and more

Join My MSAA Community and help us celebrate five years of camaraderie and connection for people affected by multiple sclerosis.

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Finding Joy in Life

Do you ever find it difficult to find happiness in the midst of hard times? Even in the face of adversity, having a mental list of simple behaviors to try out every day may help you feel happier. You might find that doing something as easy as listening to music improves your mood and helps you on your journey to finding joy in life.

Whatever joy means to you, you may tap into it in surprisingly easy ways, even when it’s tough to remember what it’s like to be joyful.

So, here are 3 easy-to-implement suggestions for finding joy in life during challenging circumstances.

1. Find the things in life that make you happy, and then do them.

2. Always take a moment to express gratitude.

3. Stay connected to the good relationships you’ve established in life.

Remember friends, do what brings you joy. Demonstrate thankfulness. And stay connected to your relationships. You are amazing, and you can do this!

Finding Joy in Life
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Luis Aparicio – August 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Luis Aparicio of Dallas, TX:

Luis Aparicio artwork entitled Play Harder

About the Artist – Luis Aparicio

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Backyard Clutter

By Gina Ross Murdoch

As a result of the pandemic and of being more aware of my surroundings, I have found a new love for gardening. This is what happens when you are spending more time at home and taking stock of your environment. I see my growing love of gardening as a metaphor for what has been going on over the last year and a half and how so many of us are looking in our own backyards (actual or virtual) for joy, comfort, and beauty.

I started tackling a very large project in the backyard feeling underprepared and overwhelmed. Landscaping has not been a love of mine in the past, so I was approaching this large project as a novice. Questions filled my mind including: How long would this project   take? Do I have the time to accomplish the task? What expertise do I need to select plantings properly? And will the project be a success? However, I was determined to dive in and create a beautiful rose garden that would provide endless beauty and delight to my family.

Rose garden before

I decided to take the project one small step at a time giving myself adequate time in between to rest, reflect, and approach the project each time with a renewed sense of excitement. There were days when the task was daunting and times that I truly believed that my vision would never be realized.  But bit by bit, square foot by square foot, I removed all the brush and got down to beautiful brown dirt. At this point, I had removed all the distractions and was down to a blank slate. I now had the opportunity to decide what I wanted to plant. I had eliminated all the backyard clutter and arrived at a space where there were endless possibilities.

I chose all roses including yellow, white, pink, red, and multicolor for my planter. I then built a rock wall around this beautiful new area to preserve the work that I had done and highlight the beauty of the arrangement. When I stepped back and looked around, I was proud of taking on such a large project, getting way out of my comfort zone and trying something new.

Rose garden after

During these challenging times, I have spoken to so many who have found ways to look into their own metaphorical backyards, clean out clutter, and plant new ideas. That introspection and re-evaluation is never easy. It often pushes you out of your comfort zone, but that is where new growth is planted and thrives. We have all needed to adapt, re-evaluate, reflect, and change. Approaching a project that will both challenge and delight you can be a transformative experience. Mine centered on gardening. Your project could be much different but still lead you to a new sense of accomplishment. I only offer the suggestion that you give yourself time to advance and rest. Both are critical when traveling your journey of discovery.

I hope you will all find delight in tending to your own gardens whether that may be physically, virtually, mentally, or spiritually, and I hope you enjoy the fruits of your labor and learn as much as I have.

Rose garden - yellow rose closeup

*Gina Ross Murdoch is a seasoned executive in non-profit management and has served as MSAA’s President and CEO since 2016. Her career includes leadership positions with chapters of the Leukemia and Lymphoma Society as well as the American Diabetes Association. Earlier, she spent 14 years overseeing development activities at a large chapter of the National Multiple Sclerosis Society, leading explosive growth initiatives and ground-breaking strategic projects. You can contact her at president@mymsaa.org to share your thoughts on how MSAA is improving lives today, or to learn how to get involved in our mission.

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How Painsomnia Affects Sleep and Where in the Body It Shows Up

MS painsomnia

After a long and possibly pain-filled day, what anyone with MS wants is to fall asleep. But sleep is often difficult to achieve. For many people, the pain of MS either gets worse at night or fails to quiet down, keeping them awake.

This is called painsomnia. To find out more about how it shows up for folks in the community, we reached out on the MultipleSclerosis.net Facebook page and asked: “Have you ever experienced painsomnia (the inability to sleep or rest because your body is in pain)?”

More than 400 community members shared. Here is what they said about how and where painsomnia affects them.

Every night

The most common response to our question was that people deal with painsomnia every night. It is an ongoing problem that makes bedtime a dreaded event – and the stress of that can make falling asleep even more difficult.

“Every night I feel pain in my feet. I do not know if it is neuropathy. But it feels like if I move my foot, it would break off. Why does it happen when I lie down to rest? All my joint pain intensifies. I feel numbness, too. Most nights it is 2:00 or 3:00 AM before I can go to sleep.”

“Yes. Every day for the last 2 years. It is oppressive and miserable!”

“Every. Damn. Night. My legs and feet hurt the most. This last year or so, I have started waking up with 1 or both of my legs numb from my hips to my toes. My hands go numb every night too. Bedtime sucks.”

Only some nights

For others, painsomnia only happens on some nights. Some people explained that it can actually be more of a challenge to tackle this problem if you do not already have a routine or treatment in place.

“Some nights more than others!”

“Yes! Just last night. It does not happen often.”

Cannot stay asleep

Many people in the MS community shared that while they can fall asleep, this pain wakes them up in the middle of the night. After they are awake, the pain makes it so they cannot get back to sleep.

“I sleep for very little time, and I am awake by 5 am every day.”

“Yes, all the time. I have been up since 2:30 AM from pain, along with the MS hug this morning.”

“Yes, I cannot stay asleep, which just adds on to the MS fatigue.”

Mostly in the limbs

The overwhelming majority of people who responded said that they feel the pain in their limbs – the arms, legs, hands, wrists, and feet. The pain can show up as a burning feeling, numbness, or even spasms.

“Arms, hands, and spasms in my legs. Usually 2 to 3 hours after lying down.”

“Burning pain in my right hand/wrist/arm/shoulder.”

“Yes, mostly from leg cramps and bad back pains, but also it just hurts all over.”

“Mine is numbness and tingling in my arm.”

“Usually in my one heel, but recently it has started in my hands.”

“My legs and feet hurt the most. My hands go numb every night, too.”

Shows up as pain where lesions are

The second most common response was that the pain appears where lesions are. MS lesions often show up as scarring around the central nervous system, including the spinal cord. It makes sense that people with MS can feel that burning and tingling pain in the neck or back.

“I feel it in the top of my neck, where I have a large lesion.”

“Yes. Back pain where my lesion is. I cannot stand it.”

Did not know it had a name

We cannot heal what we do not recognize. Many respondents did not know that there was a name for sleep issues due to the pain of MS. Sharing our experiences helps others know they are not alone. Realizing painsomnia exists is often the first step toward reclaiming a good night’s sleep.

“Just about every night, but I did not have a clue it had an official name.”

“Yep, and now I have a name for it.”

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Baked Parmesan Zucchini Rounds

Baked Parmesan Zucchini Rounds are a great way to use delicious summer zucchini! I have a gardening plot in my hometown community garden and my zucchini are thriving. 

This simple side dish is quick and easy and requires only 2 ingredients!

Ingredients

  • 2 medium-sized zucchinis.
  • 1/2 cup freshly grated Parmesan cheese
  • Garlic salt and freshly ground black pepper, optional.

Instructions

  1. Place oven rack in center position of oven. Preheat to 425°F. Line a baking sheet with foil and lightly spray with cooking spray like PAM.
  2. Wash and dry zucchini and cut into 1/4-inch-thick slices. Arrange zucchini rounds on prepared pan, with little to no space between them. If desired, lightly sprinkle zucchini with garlic salt and freshly ground black pepper. Use a small spoon to spread a thin layer of Parmesan cheese on each slice of zucchini.
  3. Bake for 15 to 20 minutes, or until Parmesan turns a light golden brown.   Serve immediately.
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Day Trip Outings

By Stacie Prada

Living with MS can lead a person to avoid doing things outside of the routine. Dealing with unpredictability can make a person avoid additional inconveniences and uncertainty.

When my gut reaction is to think something is too much effort, it’s good for me to think about why I’m resisting. There might be a good reason for resistance, but knowing the cause is helpful. If it’s rooted in avoidance or fear, I want to challenge myself to identify what I can do that would offset the what ifs. 

What if it’s not worth the effort? What if I go somewhere and my MS symptoms rear up? What if I need something and I don’t have it or I can’t get it?

Living well with MS requires knowing yourself well, respecting and adapting to health needs, and planning ahead. All of these life skills are well-suited to successful and enjoyable outings, and doing new things can add excitement and fulfillment to any life. Day trip outings are perfect for experiencing the joy of travel while keeping the comfort of sleeping at home. 

You do you. If you don’t want to go somewhere or do something, don’t!  But if you want to do some day trips and are feeling resistant, consider this:

  1. Perpetual planning allows spontaneity to thrive. Many barriers can be accommodated with creativity, preparation and a willingness to explore alternatives. Over prepare and expect things won’t go perfectly as planned. 
  2. Pack a day bag with personalized essentials to ease stress. The day bag should include anything that will provide comfort and options. I like to include water, snacks, medication, bath tissue, sunscreen, jacket, hat, extra shoes and socks. Think about everything that could be in the car to make it feel like any circumstance or change of plans could be accommodated.
  3. Set reasonable expectations. Overestimate travel time, and grant yourself permission to change plans.
  4. Focus the trip around one anchor focus or goal for the day. Create a mental or written list of other things that can be done, if plans change and energy and time allow. Back up plans help diffuse disappointment when things don’t go as intended. Schedule plenty of extra time to do more or less in order to take good care for yourself. Delays and unexpected changes of plans can sometimes lead to wonderful opportunities.
  5. Allow for lots of bathroom breaks, and never pass a restroom assuming another one will be available later. It’s better to go too often than to not have access to one when it’s needed.
  6. Make the travel experience as fulfilling as the destination. Go with someone you want to spend time with. Have a good playlist, podcasts or book on tape ready to play. Consider why you’re going. If it’s a trip to a view point, there might be clouds obscuring the view when you get there. Enjoy the journey, the people and doing something out of the routine. 
  7. Look for surprises, and be open to exploring them. Allow for impromptu diversions. Rainbows, herds of elk and skydivers landing have all been rewarding unplanned sights I’ve enjoyed because I looked beyond the road and was willing to turn off the planned drive.
  8. Use technology, but don’t get overwhelmed. Look online or use apps for recommendations in the area, and consider them. I love using navigation apps for simplifying the directions and letting me know the time and distance to my destination. 
  9. Talk to people. Locals always know the best places, and they love sharing special tips that you might otherwise miss. Just connecting with people can be fulfilling too!
  10. Interrupting someone is required when pointing out something nearby or of interest that won’t be visible a few moments later. 
  11. There’s always time for ice cream. Literally or figuratively, indulge and enjoy the trip!
Elk on a day trip

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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