Community Views: What Society Believes About MS and Relationships

When MultipleSclerosis.net contributor Anita Williams wrote “Beggars Can Be Choosy” about what society believes about people living with the diagnosis, she hit a nerve. She brought to light many of the negative stereotypes that are often not openly discussed. 

After Williams’ article was shared to the MultipleSclerosis.net Facebook page, it sparked a response from nearly 150 community members. Here is what was shared. 

Having MS does not make someone broken 

Too often, people with MS can believe the lie that having an illness makes them hard to love or accept. There is a societal belief that having a disease makes someone “broken” or somehow “less than.” This is a horrible lie. 

When it comes to relationships, true love is unconditional, not transactional. Loving someone means loving who they are as a person, not loving how many chores they can do, meals they can make, or how much they can do for someone else. That kind of transactional love is not healthy. 

“This is exactly how I was made to feel. It is now 4 years after my divorce, and I now realize that I am a good person and not broken. I will be fine and, God willing, I will find the person who can love me as I am. My ex is the one with the problem, not me. He will not ever find the perfection he is looking for because nobody is perfect. He only thinks he is.” 

“Two days before I married, I was diagnosed with multiple sclerosis. The marriage ended, but not due to my illness. During our marriage, I often heard, ‘Wow, and he still married you?’ Yes, he did.”

A black woman looks lovingly down at her own heart in her hand.

Others believe someone with MS is “lucky” to be married 

So many community members shared that they, like the author, had been told that they are lucky to have a partner. This is never a kind thing for someone to say, nor is it true. Having an illness does not make someone less loveable. Some community members shared that they do feel lucky to have a partner. But truly, everyone who has a partner is blessed to have found love. 

“Ugh, it is true. I do not know how many times I have been called ‘lucky’ to have my partner. I wonder if anyone has ever told him he was lucky to have me. It is doubtful.” 

Both partners are lucky to have one another 

In a true partnership, both people will feel lucky to have one another. Each person brings their own unique gifts. Both people will give to one another, and both will receive – that is what partnership means.

Many in the community shared that they have no doubts about the value that they bring to a relationship. They know that having MS does not limit their self-worth. They also see that their partner is lucky to be with them.

“My husband is wonderfully supportive, as I am to him. A couple of years ago, he nearly died from sepsis and had to have his leg amputated. It was a dreadful time, and he needed a lot of nursing, which, at first, was hard with the MS. But we muddled through together, and I think we are even closer now.” 

“I am lucky to have my partner, and we are lucky to have each other. We take care of each other.” 

“In reality, I know I am lucky to have my husband with me, and he knows he is lucky to have me in his life. It does not really matter what anyone else thinks or says.” 

“Personally, I think he is bloody lucky to have me!” 

“Oh, way to go! I was married over 20 years before I was diagnosed, but I married a man with character, and he knows he is lucky to have me. I am not a victim. MS, nor any other disease, will never cheapen my value.” 

Thank you to everyone who shared. We are grateful to hear from so many community members about your personal experiences.

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Our Relationship? It’s Complicated

By Doug Ankerman

Relationships come in all forms. Personal. Family. Professional. Casual. The list runs as long as your arm.

Each relationship, different in its own way. And each, as unique as the next.

We try our darndest to be careful with words and actions not to lead, disrupt or inflame. Care must be exercised to keep a relationship in its particular form — as crossovers can mean trouble.

Add multiple sclerosis into the fray and judgements can be blurred. Thoughts jumbled. Feelings fuzzed.

That is why I am thankful for two very special relationships in my life. 

One, with a local auto parts store. And the other, the neighborhood plumber’s supply.

There, we experience connections on a higher plain. A shared silence of understanding.

Not being handy, nor mechanical, I am mummified to explain what I need or am attempting to do.

Relationships - Doug looking confused

Mostly, I shuffle into their establishment with a pathetic look on my face.

A blank stare of incompetence.

From my pocket, I produce a worn-out part, some gadget-gizmo. I don’t know its name or purpose. I simply put it on their dirty counter and let them go to work.

Not a word is exchanged as they see the desperation in my eyes. They will gather up everything I need. Then carefully explain how to complete my back-handed attempt at the project.

Of course, having MS, their words fly over my head like Blue Angels at an air show.

(They are seeing my dumb face pictured above, remember?)

So, they simplify their explanation. Even drawing me a crude diagram on the back of the receipt.

Satisfied, I shuffle back to my car and home again with new-found confidence.

Balsa-wood bravado. Paper-thin capability. But it’s all good. 

What we have is special indeed. A relationship that’s…yeah, it’s complicated.

*Doug writes about multiple sclerosis and other stuff on his humor blog at myoddsock.com

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Meet the Board – Meryl Ravitz

MSAA strives to be a leading resource for the MS community by Improving Lives Today through vital services and support – and we could not accomplish this without the help of our volunteer board members. MSAA’s Board of Directors is comprised of accomplished professionals from across the country who volunteer their time to further MSAA’s mission. With our ongoing series, Meet the Board, we look to introduce you to our wonderful volunteer board members!

This month, MSAA is proud to highlight our newest board member Meryl Ravitz and share her inspiration for joining the Board of Directors and future goals for the organization.

Professional Background: Meryl Ravitz is an entrepreneurial financial executive with more than 25 years of senior-level experience in small/mid-capitalization companies in the telecommunications and consumer products industries. She has been instrumental in Equity & Debt placements, IPO’s and the related SEC work, Sarbanes-Oxley, budgeting, reporting, audits, treasury, and human resource functions at her various companies.

Ms. Ravitz has been the CFO & Treasurer of XcomIP, a wholesale telecommunications company, since 2011. Prior to that, she held multiple finance positions at Vivaro Corporation, leaving as the CFO & Treasurer. She also held finance management positions at Wired Business as well as Destia Communications. She started her career at Deloitte & Touche.


What inspired you to join MSAA’s Board of Directors?

I am thrilled to join MSAA’s Board of Directors! I have been volunteering for MS organizations since 1992 when I joined the National Multiple Sclerosis Society – NJ chapter, as the youngest board member. My father had MS my entire life, and he passed away in 1988, prior to the availability of any MS medications. I vowed to do something to help other families not go through what he and our family went through. I was the Board Co-Chair and Treasurer through my 25 years at the MS Society, leaving in 2017. I then joined MS Hope for a Cure as Treasurer for three years.

MSAA’s focus on helping people living with MS is really exciting to me. During my time at the National MS Society, I instituted a scholarship program for teens with MS or a parent with MS to help with college-related expenses. I loved getting to know the teens and their families, who benefited from the scholarships, which for many was life changing. I also helped at various events (both programs and fundraising) over the years where I could meet the people we were serving. Helping others is something I’m very passionate about. My daughter and I have also been volunteering at a homeless shelter for the past four years, since she was three years old. MSAA’s mission of helping those living with MS inspired me to join.

Lastly, I joined because MSAA has the best CEO around. I have known Gina Murdoch since our days at the MS Society, and look forward to working again with someone so dedicated, trustworthy, and caring.

What are your goals as an MSAA Board Member?

I would hope to make a difference as a Board Member. Whether that’s starting new programs, helping at existing ones, raising money, or getting to know the people we are serving, it’s all interesting to me. I will be on the Finance Committee and am happy to help MSAA where needed. In addition to the needs of the organization, my personal need is to be an advocate and supporter in the lives of our friends with MS. I hope that my knowledge of MS and passion for supporting others enables me to be a great Board Member and I look forward to the days when we can meet in person!


Editor’s Note: MSAA is extremely proud and honored to enlist the support of Meryl Ravitz and all dedicated Board Members who volunteer their time, expertise, compassion, and leadership to help us achieve our mission of improving lives today for the entire MS community. We are very grateful for their service and look forward to their continued support as we strive to serve more people in more places than ever before. Thank you once again Ms. Ravitz!

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Good Confidants Can Handle the Tough Stuff

By Stacie Prada

Our relationships affect our health, and our health affects our relationships. Our health and our relationships evolve over time as each person ages and life chapters change. These are simple and obvious facts, but I find them to be something I need to remind myself periodically.

Living with a chronic and progressive illness like Multiple Sclerosis complicates the issues to tackle and the dynamics to navigate relationships.  As my body changes, my focus always shifts inward.  Is this symptom new and temporary, or is it a small indication of worse things to come? What do I need to do differently now, and what might it signal for my future?

These are important questions to consider.  Identifying symptoms, possible treatments and available resources are crucial for navigating the physical aspects of chronic and progressive diseases like MS.

In these times, I try to stay logical and pragmatic.  I try not to overreact. I try to work through my fears and frustrations in a healthy way that doesn’t impact anyone else.  They don’t ask me to keep it to myself, but it’s my natural preference.  Unfortunately, the agitation and worry usually seep out, and those close to me sense it.

Stacie Prada relationships on her blog post Sharing the Tough Stuff

It takes a lot of self-awareness and acceptance to disclose when my body isn’t working well. Usually, I’m still trying to get a handle on what it is and whether it’s significant or not. I’m still trying to analyze and monitor the changes.  I often am not yet ready to share, because I’m hoping things might improve and there might not be anything to share.  This means those close to me experience the consequences of my changing health before I even realize I’m stressed and irritable.

My confidants have excellent skills for showing curiosity and support while not pressuring me.  Sometimes unknowingly, they help me manage my feelings, my fears and my frustrations.  They hear me, believe me, don’t compete with me, and share themselves with me. I see their grace when I deflect or shut down an inquiry.  These are the people to keep close, because they’re willing and able to help me.  When I see them hesitate or gently back off, it’s my signal that I should share what’s bothering me.

Yet, I still hold back.  While it’s silly to think saying things out loud will make them worse, it’s exactly how I feel.  If I share that my legs hurt more and my coordination is worse, it means my fears of becoming disabled are warranted.  It means I’m becoming disabled.

I’m seeing disability with MS can be a slow, gradual and very invisible transition.  It appears to me that I will be greatly affected by my disease before anyone sees me with a mobility aid.

I’m going through this life with MS, and the people close to me are going through this life with MS with me. Some made my life harder, and I’m fortunate to no longer rely on them.  Others have proven to be healthy and respectful, and they are my cherished relationships.  They check in, they ask how I’m doing, and they back off when they see I’m not up for saying more.  It’s not until I open up and share the invisible changes I’m experiencing that they can really go through this with me in a way that helps me cope.

Having a body slowly and progressively deteriorate is an isolating feeling.  It takes effort to explain and not complain.  I get sick of living with MS, and I get sick of being tired of it. I want to be low maintenance and easygoing, but this disease is one that requires constant coddling and accommodations for my body’s needs. It takes a lot of time and effort to do the physical tasks that are needed to manage my MS symptoms, and it takes tremendous effort to challenge the negative thoughts that come from having a chronic illness.

I haven’t found the secret to skipping the irritable phase.  I’ll notice I’m grouchy, and I try to override the temptation to lash out. Sometimes I do well. I keep my mouth shut and go for a walk or do yoga.  Sometimes I reveal my bad mood in my tone or curt responses. It’s moments like these when I don’t feel like I’m being as nice as I’d like that I hope to avoid or get through quickly.  Often the best I can do is give myself a timeout and tell those around me that it’s not them.  My goal is to be able to feel pain without lashing out and seek connection to help get me through the feelings of uncertainty and frustration.

Once when I was going through an especially difficult time, a friend wrote in the sympathy card, “We’re hurting with you.”  It hit the right nerve, and tears along with a sob came quickly.  I was feeling very alone, and having someone succinctly address it allowed for a cathartic feeling of connection.  I know the antidote to feeling powerless and alone is sharing with those close to me. It doesn’t fix my problems, but it lightens the emotional load I’m carrying.

If I can be truthful and forthcoming with the people who have my back, and if I can be a source of support for their challenges, I think we’ll all fare well.  The best relationships can handle the tough stuff.

*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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Is it worth it?

By Lauren Kovacs

I am a big introvert. I think I am allergic to people. It is more drama and there is always drama. I hate drama. MS gives us enough drama, so I don’t need more. “Full up dude. Move on. Nothing to see here.”

With that being said, we still need human interaction. Build relationships with substance. Learn to hone in on that vibe. Tune into the valued relationship channel. If this is not natural for you, it can be learned.

I once did not listen to that station concerning someone. I gave them the benefit of the doubt. I was chastising myself for being too hard on people. I opened my gate and didn’t pay attention. Bad idea. Let’s just say that not everyone out-grows being mean.

MSers cannot afford to just ignore signs or vibes you would normally see before you jump into the shark tank. There are sharp teeth in the tank of life. Some people know no other way then to eat you alive. 

When you come across a treasured relationship, keep it. It is a rare gem. Family doesn’t automatically mean you are in possession of a rare gem. You have to test it and put feelers out. Go slow.

Sad to say, but a lot of folks will never understand. MS is tough to contemplate even for those of us living with it. MS is full of surprises.  Study your relationships. What is their value?

Our efforts are worth a lot. Are the receivers worth your efforts? In a valued or important relationship choose  wisely. Observation and your gut feeling often play a role in valued relationships. Choose wisely.

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Garlic Butter Mushrooms

I was never a fan of mushrooms until I started making this recipe.  I can tell you honestly, I pop them in my mouth like candy. 

These sauteed mushrooms only need a handful of ingredients and are easy to make.  If you are looking for a flavorful side dish to impress your taste buds, this recipe is for you.

Ingredients

  • 1 pound button mushrooms
  • 3 tbsp salted butter
  • 1 tbsp olive oil
  • 2 tbsp finely chopped fresh parsley
  • 4 garlic cloves crushed/minced
  • Dash of salt and pepper

Instructions

  1. In a large frying pan, heat butter and olive oil over medium high heat.
  2. Add mushrooms to pan and mix to coat them in the butter/oil mixture.
  3. Cook mushrooms for about to 8 minutes without moving.
  4. Flip the mushrooms over one by one and then let them cook for another 8 minutes.
  5. Add crushed garlic and parsley to pan, mix to coat and cook for 2 minutes.
  6. Add salt and pepper to taste and serve immediately.
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The Importance of Valuable Relationships

Valuable Relationships

Relationships. Just how important are valuable relationships? Do they really matter? In the current state of the world, in the midst of a global pandemic, are relationships still relevant? Short Answer? Absolutely!

Relationships are important because they bridge the connection between people. They are the essence of humanity and are vital to the mental and emotional health behind the human experience. It is the connection between two individuals that can lead to happiness and success in a person’s life. This very reason is why it is so important to have valuable relationships.

Whether it be a relationship with a parent, family member, or friend, relationships are important because they satisfy the human need to connect. Important relationships also provide an additional perspective to your own thoughts and can help get you out of emotional slumps. I’m thankful that throughout everything I’ve encountered in my life, I’ve had valuable relationships to help keep me encouraged and moving forward.

Valuable relationships can also give you that much needed “second wind.”

 Friends, there might be times when you want to give up. There might be times when you can’t see a solution to your current situation. In those discouraging moments, reach out to a friend or a loved one for an additional perspective. It is in those additional perspectives that you can find great hope, strength, and encouragement to keep pushing forward. It is in those additional perspectives that you will find your “second wind.”

Valuable relationships are super important in more ways than we realize, and holding on to them is a must. Friends, I want to encourage you to stay connected with those valuable relationships in your life. Reach out and stay connected with your loved ones. You will find yourself much happier, and your mind and body will thank you.

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Sisterly Love

With Valentine’s Day around the corner, this time of year usually makes us think of candy hearts and bouquets of flowers and mushy love songs. But aside from the romantic relationships that usually dominate this holiday, it’s also a good time to think of the other bonds that we value and find important in life. Our connections with others are something to treasure now more than ever, so it’s nice to think of the other relationships that mean so much too. For me, I value the relationship that I am fortunate to have with my sister.

Growing up we bickered and fought just like typical siblings do. We had times where we didn’t like each other but we still loved each other cause ‘we had to’ kind of thing. But as we grew older, we started to appreciate who the other was and learned more about them. Now we look back and realize how lucky we were to have one another. Our other siblings were close in age but older, and while we were all close and grateful for that, my sister and I formed a bond that has strengthened to this day.

My sister is a wonderful mother and talks about having more children because she wants her son to have a sibling with whom he can have the same type of bond that her and I share. As our family has sadly lessened over the years, we’ve grown increasingly grateful for those we are still blessed to have, and I am thankful for her every day. She listens without judgement, loves unconditionally, and knows my quirks, fears and hopes.  My sister is always there, and I would feel lost without her. She’s a fun reminder of our childhood and is someone that I can reminisce with to share memories of family and good times.

If you have a relationship in your life that you value and cherish, be sure to let that person know it. You don’t have to say it every day, but once in a while let them know that they are important to you and what your connection means. It’s nice to share this sentiment with the people in your life who matter the most.

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Shana Stern – February 2021 Artist of the Month

Each year, MSAA features the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We also highlight one artist each month as our Artist of the Month. This month, we are proud to feature artist Shana Stern of Pacific Palisades, CA:

Painting by Shana Stern titled "Sound of Silence"
“Sound of Silence”

About the Artist:

“Unable to hold a paintbrush because of my MS, I began painting using my fingers and knuckles, rather than brushes. I paint each piece to a song — trying to interpret the feeling and movements of the dance I see in my brain. Crouched over canvas, covered in paint, lost in the music — everything else disappears. All my pain, cognitive and physical issues dissolve away into beauty and the freedom that painting affords me.

I’ve lost much to MS, but my art has given me a second chance in life. I still get to tell stories — but instead of using a pen, I now use paint.”

Read more and see additional works from this artist and others at mymsaa.org/artshowcase.

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30 Things that Give Me Hope

By Doug Ankerman

Fitting with this month’s theme, here are 30 things that give ME hope…

Falling asleep before the legs begin to dance
Elastic waistbands
Good hair day
Stoplights turning green
Summer shade
Kohl’s Cash
Puppy licks
Slippers on a cold morning

Zippers with large pulls
Curbside pickup
Low threshold doorways
Laxatives
Red sky at night
Slow news day
Finding money in a pocket
Automatic toilet that doesn’t flush five times
Staying awake past 9:00
Open drive-thru lane at the bank

Getting one final squeeze from the tube
Opening chip bag without ripping
Springtime
Coming Attractions
Food I can cut with a fork
“You May Already Be A Winner”
Air conditioning
Inaugurations
Zip closure bags that stay zip closed
A vaccine
Working shake machine at McDonalds

And finally…

Bathroom scale that is “light” (but you don’t know it)

Did I leave something out? Leave a comment by sharing what gives YOU hope.

*Doug is a member of the MS class of 1996.  He writes silly stuff about multiple sclerosis and other junk on his humor blog at myoddsock.com.

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