The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.
For this year’s MS Awareness Month campaign, MSAA provided a number of digital resources focusing on Improving Mental Health and Wellness. This campaign featured webinars, a podcast episode, and insights from MS experts covering topics, such as:
Purpose in Life (PIL) – This research area focuses on the interactions between mind and body in powerful ways. PIL has been shown to significantly support the central nervous system, cardiovascular health, and even the immune system. Explore the concept and learn how to develop and foster your own Purpose in Life in the archived webinar, “Finding Purpose in Life.”
Depression and Anxiety in MS – Depression is a common and often overlooked symptom of MS, while anxiety is perhaps the most taxing and under-treated psychological effect of living with multiple sclerosis. Discover helpful strategies to manage these significant mental health issues in the archived webinar, “Managing Depression and Anxiety in MS.”
Care Partnering – Learn about the often overlooked physical and emotional needs of care partners and how to avoid care partner burnout in the podcast episode, “Caring for the Care Partner.”
Wellness Strategies – Find helpful strategies to better manage four key areas that impact mental and emotional health – sleep, staying connected, diet and exercise, and self-care – on My MSAA Community.
No one hates multiple sclerosis more than those of us living with it. When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body. MS gave me a wake up call on that kind of thinking.
My mental health was in danger of collapsing. Does that sound like I’m over-exaggerating things? Well, I’m not. Life was changing too fast and I was caught in a mental fog of weariness and disbelief.
The morning after my diagnosis I awakened and for a moment not just forgot what I had planned for the day, but who I was, what day it was, where I was and basically everything and anything about life. That was my morning wake up experience.
For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.
I found it hard to explain to people what I needed and why that need existed when the person I was talking to couldn’t physically see the struggle I was facing. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.
Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when or if they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.
Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from MS physical challenges, unbearable pain, financial difficulties, and emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything will to be okay and remind myself that my life is full of meaning and purpose.
When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.
Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some awful moments. Things that even the bravest and strongest of people would collapse under, but you made it.
You are not alone with your MS struggles. No one living with MS has an instruction booklet on how MS is going to affect people or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come nicely packaged in pretty wrapping paper and tied together with ribbons and bows. If it did I would give it back…with a wedgie.
When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this. I know you are going to make it.
Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.
You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it!
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
Life is not a straight line. Grief, coping, adjusting and recovery don’t follow straight lines from feeling bad to better. They’re more of a spaghetti diagram of past merged with present, conflicting emotions colliding without logic, and highs and lows mixed together as conditions change, time progresses and we adjust.
I can feel sadness, loss, fear, anxiety, love, connection, hope, strength and contentment in a single day. Usually I do. Often, I feel a combination of them all at once, and I think it’s normal for me.
I’ve learned flash mobs make me cry. Every time. They can be upbeat, fun and joyful, and still tears stream. I love the combination of surprise, music, choreography, people coming together and people dispersing as quickly as they started. They make me happy. They also trigger overwhelm for the connection, surprise and happiness they elicit.
I can analyze flash mobs for why I can’t keep my emotions level while watching them, and I can accept I don’t need to fix it. For me it’s a great example of how combinations of feelings can simultaneously occur when they aren’t usually related.
Remembering that feelings can be randomly triggered and illogical helps ease the desire to find the cause, the solution and validation. If I assume every feeling is valid yet temporary, I’m less likely to obsess over them. They can surprise me, consume me and evaporate as powerfully and fleetingly as a flash mob.
Certainly, if I’m suffering, I want to shorten the timeframe of feeling bad. If suffering persists, I want to have help. I know I’m susceptible to depression given my multiple sclerosis, and I watch for it. If I know not every feeling has a logical reason or need for fixing, fleeting emotions are less worrisome.
When feelings persist, having a well-rounded support team is crucial for my mental health and living well with MS. This team includes:
Primary care provider who tends to my overall health
Neurologist who monitors my MS progression, symptoms and mental health
Counselor to call if things seem too much for me to conquer solo
Friends and family who will listen and help me assess my condition
MS Self-Help Group where I can share and learn from people who have MS
Not everyone has access to health care, and I encourage anyone who needs help to contact MSAA to see if there are services and support that might help. If you have a different condition and don’t have a care provider, search “mental health services near me.” Local health departments often have a web page with a list of resources.
To contact MSAA, call their helpline at (800) 532-7667 to speak with one of their trained staff members, or email them at msquestions@mymsaa.org.
*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/
I’ll be real with you, for this month’s topic I struggled to come up with something that felt at least a little optimistic, but then I realized my best response is just to be honest.
Mental health is a tricky thing to discuss. For one, everyone’s story with both mental health and multiple sclerosis is different. There are some of us that are lucky enough not to struggle much with either, but the older I get, the more I realize those sorts of people are rarer than I realized. All my life, I’ve heard how “everybody’s going through something,” and my response was almost always “but they aren’t going through what I’m going through!” as if that somehow validated how I felt despite never actually feeling any better.
Here’s the thing with mental health: just like multiple sclerosis, it’s an invisible ailment in many people and that, to me, is the most unfair part of struggling with either because I’ve noticed the empathy factor from others in the world drastically lowers when you’re able to smile and–to them anyway–you “look okay.” Side note: I’m definitely including myself in that critique, especially pre-MS.
Three weeks ago, Texas did everything it could to put my mental health to the test. Yes, the entire state of Texas decided to perform some sort of survival exercise to see if we’re all prepared for the apocalypse, apparently. In southeast Texas where I live, the temperature rarely drops beneath 30 during our coldest days in winter. We’ll get some snow flurries here and there, but otherwise “moderate” would be a generous descriptor for the 3 months of winter we get each year. However, February decided to deliver a one-two (three, four, five…) punch and not only give us single digit days, but also complete it with snow and ice. I like to think of Dante’s icy layer of hell when I describe what happened that week to people because I had no idea cold could be so awful.
I’ll set the scene: I’m caring for my ailing mother, the temperature is steadily dropping outside, and all at once, the power goes out. It’s around 11AM on Monday at this point and we’re hearing reports from family members that their electricity is out, too, and they’re at least an hour away in Houston. It wasn’t a local thing, it was everywhere. Immediately, panic sets in. The snow has started to fall outside, and the temperature has as well, though we were thankfully still in the double digits. I call a close friend for help because already I’m beginning to see cars collide outside from the icy layers forming on the street. We’re Texan, y’all. We barely know how to drive in the rain.
My mom and I decide that calling an ambulance for her would be the best plan. She’s medically fragile and we knew the hospital would at least have power and nurses who could care for her. The medics arrive and I had to beg them to ignore COVID procedures and allow me to ride with her to the hospital. They agree and let me sit up front. While they’re loading her into the back, I overhear on their radio that all ambulances would be grounded at 5PM. At least in the town where I reside, we were going to be on our own through the night… I think it hit me right then that this wasn’t just a sit around and have hot cocoa situation.
The hospital wasn’t as nice as the paramedics and I couldn’t stay despite the winter storm. Luckily, I have a group of nice friends with big trucks who took a break from delivering firewood to come and pick me up. By then, the snow had started to fall harder than I’ve ever seen before, and we were ice skating through the city trying to figure out a game plan. We drove through town and saw dozens of people dressed up in snow gear roaming the streets in search of warmth just like we were. The power was out permanently it seemed and none of us had planned for that. I think back on it now and forgive myself because there wasn’t a right answer to the situation despite knowing, logically, that a little snowstorm shouldn’t have felt like the apocalypse.
The next few days are a blur for me. We huddled around a friend’s fireplace and ate what we could find while the power and water were down, charging our phones either in the car or in the brief moments when the lights would come back on. It was chaos for everyone, but I think the lesson I got from it was how our mental health can either suffer or improve dependent on how we choose to look at things, not the other way around. That week from hell, its new moniker if I do say so myself, was awful and I won’t try to sugarcoat it. I was lucky to be safe and warm, but I was also fortunate to be surrounded by people with positive attitudes and optimistic outlooks despite how bleak things got.
It was during that week that I experienced the importance of being present again. With the world quite literally frozen over, there wasn’t anything else to do but sit and just be. I got a chance to not think of anything and just sit and cuddle my cat (who had taken up residence in my friend’s bathroom) and wait for life to return to some semblance of how it was, if not changed because of the people who helped me during one of the hardest times of my life.
*Born in the heat of Texas, Chernise Joseph is an avid writer with perpetual writer’s block. She was diagnosed with MS in 2016 and has been on the ride of a lifetime ever since. Read more from Chernise on her blog millennialwithms.com.
If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on. You saw a person park in the handicap space and walk inside unassisted, so you want to call them out. You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them. Well, the truth is: LEAVE THEM ALONE!
But unfortunately, sometimes, they are attacked by a self-entitled morality vigilante that assaults them verbally or worse. I have heard of these onslaughts to be demeaning notes left on a windshield or a vicious verbal violation that left my friend in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally walking.
Just because you see a person using a wheelchair one day and a cane, the next only shows that disabilities change. The pain level or physical abilities could be high one day and drop like a rock the next day. When you see that person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition. These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!
The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true. I heard one person say they let these fakers know they are seen so the real disabled can park there. I then asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him. I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day. A person with a disability cannot be spotted in a crowd like a guy wearing a fluorescent ball cap. Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask. However, many have unseeable disabilities that need your support not your condemnation and criticism.
The ignorance of society and the way entitled people can treat others simply makes me sad. To all those who do not have enough in their lives, making them want to criticize others, I say STOP! Live your life to the fullest and let others do the same because what you think you see is not what you actually see. If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby. Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well. Everyone should make this a topic of conversation with friends and family as the truth needs to be shared.
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.
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
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!
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.
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/
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.
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:
“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.
