How to Start Healing Emotional Wounds Despite the Unpredictability of MS
Ah, MS, you picked the wrong girl to mess with. I'm tired of dancing with you. I'll never allow you to take the lead.
(You can borrow my mantra if you'd like!)
The other day, I was thinking about healing emotional wounds from living with MS. The ups and downs of anxiety and stress can, at times, be overwhelming. Was it a coincidence that I stumbled on a quote by Lancali that perfectly describes healing emotional wounds while living with MS? Hmm.
"A chronic illness is not difficult to live with because it is endless. It is difficult to live with because it is unpredictable. But like grief, every flare ends, and though the looming threat is constant, you learn to live beside it. A shadow of mixed blessings. It does not heal as wounds do, but it teaches you of your own strength till you can wear it like a battle scar."
Life is inherently unpredictable, and we can never be sure about the future. Coping with an unpredictable illness like Multiple Sclerosis (MS) requires us to be emotionally prepared to face the challenges that come our way. It teaches us to be resilient and to develop coping mechanisms that help us navigate through the difficulties of life.
It's easier said than done, but I believe it's worth it if we can do this.
I shared a post on social media to create awareness about how it feels to live with MS (or any chronic illness) and the emotional toll of fighting everyday struggles. It caused quite a stir:
My smile hides the invisibility of my illness.
It hides the 13,629 days I've lived with this damn disease.
And all of the symptoms and comorbidities that followed.
It hides every piece of crap advice I've been told to "overcome" MS.
And (the sometimes) lack of support and research for patients over 60.
Despite all of this,
I smile because I choose to be intentional about how to live my life.
By spinning gold out of straw.
Joy after tears.
Sunshine after grief.
And gratitude after waking up each day.
I'm not a Pollyanna or a character out of "Tom Sawyer" who's trying to whitewash the truth of living with MS.
This way of living works for me; it has so far.
I'm 65, and I've lived with MS since I was 28.
So, I know a thing or two.
I want to tell you this:
For all of you having a hard time with whatever adversity you're facing,
Take it one day at a time. One baby step at a time. There's no right or wrong way to BE. And no time clock.
Step through whatever you're facing; there's no going around it. That doesn't work.
And when you're ready, I mean really, really ready,
I'll be here waiting to listen to whatever you have to say.
And I'll send you a smile no matter where you are on your journey.
I hope you'll send me a smile back.,
Remember: Be grounded in today, let go of yesterday, and be patient for tomorrow. All we have is here right now.
Here are some recommendations for learning more about mindfulness, emotional wellness, complementary medicine, or two books I can't do without. As always, please leave any thoughts or questions in the comment section:
Jon Kabat-Zinn- Founder and Developer of mindfulness-based stress reduction
Health Central- How to Deal with Your Feelings and Emotions of MS
Don Miguel Ruiz, The Four Agreements (A Practical Guide to Personal Freedom)
Allen Bowling, MD, PhD, MS Specialist—I interviewed Dr. Bowling about his book Optimal Health with Multiple Sclerosis: A Guide toIntegrating Lifestyle, Alternative, and Conventional Medicine (click here to read the interview). I highly recommend reading this informative guide. It's one you'll go back to again and again.
Can You Live with MS and Still Find Reasons to Be Thankful?
I'm thankful that I started my blog over ten years ago, but at first, I hesitated to be open and vulnerable. I worried about readers' reactions and whether they'd like my content. The anxiety was intense whenever I published a post.
Blogging was in its infancy, and I was trying to understand my audience.
Since then, I have gained a lot of knowledge about the MS and chronic illness community, and fortunately, I have found out that my stories bring hope and strengthto many people. I say this with great humility. When my posts touch someone's heart and resonate with them, I feel my mission is accomplished!
March is MS Awareness Month, and a few years ago, I wrote about why I'm thankful for my diagnosis. Please don't turn away!
Some readers criticized me for not giving enough attention to MS's struggles. I want to clarify that it was never my intention to downplay the challenges that come with the disease. Instead, I was trying to convey that my diagnosis gave me a purpose and allowed me to meet incredibly strong and compassionate people. In a strange way, I felt like I was meant to be a health advocate, which gave me a sense of belonging.
I'm not promoting toxic positivity but striving to find the bright side of life's difficulties. MS can hit us hard and leave us feeling defeated. It can be more than a challenging taskmaster.
For those reasons and for our mental well-being, don't you think we should search for any silver linings we can?
Can you think of any reasons that help you feel thankful despite inevitable challenges?
If I were never diagnosed, I never would have:'
Become mindful, at such a young age, of the fragility of life and the importance of telling those you love how you feel about them. Know the value of a single day.
I had the opportunity to meet countless people from the medical community who work tirelessly for better patient care and research for MS.
I'm honored to work for many MS and health-related companies and websites, including MultipleSclerosis.net, where I've worked for ten years. They put patients first and see contributors and moderators as valued partners with essential opinions.
I learned more about human nature and how accepting people for who they are is healthier than how you wish them to be.
I felt (and feel) the blessings, light, and love of dear friends who have my back even on my darkest days. They are my heroes and sisters. I hope they know how much they mean to me and that I have their backs, too.
I'm blessed to hear stories from readers about their unique journeys. I'm honored to know their courage, and I hope my heartfelt words gave them comfort and peace.
I always feel the unconditional love and support of my husband and son. If I were never diagnosed, their unwavering love would still exist because that's who they are. Their inner strength has been tested with each MS exacerbation because my struggles are also theirs. They rise to the challenge without question every single day. I'm endlessly grateful to have them in my corner.
Lastly, THANK YOUfor reading my blog and being with me in this space. It's a privilege to hear your stories and a pleasure to know you. I'm grateful to be a small part of your life.
Here's a sweet and informational video created by the Multiple Sclerosis Association of America, which is committed to making a difference in the lives of people with MS.
About Multiple Sclerosis
"Multiple sclerosis (MS) is a disease of the central nervous system (CNS), which consists of the brain, optic nerves, and spinal cord. MS damages or destroys the protective covering (known as myelin) surrounding the nerves of the CNS and can potentially injure the nerves as well. This damage causes reduced communication between the brain and nerve pathways. Common MS symptoms include visual problems, overwhelming fatigue, difficulty with balance and coordination, and various levels of impaired mobility. Many experts estimate that 2.5 million people worldwide have been diagnosed with this disease, and most people with MS are diagnosed between the ages of 15 and 50. MS is not contagious, and researchers continue looking for a cause and a cure."~ Multiple Sclerosis Association of America
March is Autoimmune and MS Awareness Month: 12 Strategies to Help YOU Get a Better Night's Sleep
Every month of the year seems designated as the month to create awareness about a particular disease. Although I don't personally agree with this concept since raising awareness should be an ongoing effort throughout the year, I support the idea of awareness months. After all, why not bring attention to them?
One of the common symptoms is fatigue, which is defined as extreme tiredness, but, in reality, we all know fatigue is so much more.
I reflect on my younger self, working long days in New York City and traveling to beautiful places like Provence and the Canadian Rockies without needing rest or a nap. Sigh. I miss those bygone days because as I age, my fatigue worsens, and the progression of all my symptoms makes traveling more difficult.
My body shuts down mid-afternoon, forcing me to lie down and nap. At night, I can't fall asleep until 1 am, even after taking my prescribed sleep medication. Every day, it's a vicious cycle.
Help!
I sleep with an eye mask and earplugs. Sexy, right? 🙂
I recently became acquainted with Noelle Creamer, who was diagnosed with Wegener’s Granulomatosis. This rare and life-threatening autoimmune disease unfortunately left Noelle with some permanent damage, including septum perforation and hearing loss. Noelle created a sleep routinethat helps her sleep well and shares them with others to help them do the same. They are as follows:
Sleep Strategies for Autoimmune Wellness: 12 Steps to Thrive by Noelle Creamer
Morning Sunlight Exposure: Regulate my body's internal clock, signaling it's time to wake up and get moving.
Stay Physically Active: Lift weights, walk 10,000 steps, do yoga, and keep active throughout the day.
Keep My Brain Engaged: Challenging my brain daily with tasks that keep it active and engaged. This doesn't mean overworking but rather stimulating my mind in healthy ways.
Eat Nutrient-Dense Foods: I focus on nutrient-dense foods that provide the vitamins, minerals, and antioxidants my body needs to support healthy sleep patterns.
Dim the Lights at Sunset: I protect my natural melatonin production by dimming the lights as the sun sets.
Bedroom Sanctuary: I keep my bedroom temperature cool (around 66-68 degrees Fahrenheit), free from visible light and electronics. There is no TV in the bedroom. (An eye mask can be a great addition if complete darkness is hard to achieve.)
No Screens Before Bed: I avoid the stimulating effects of blue light by staying off screens 2 hours before bed.
Consistent Sleep Schedule: I go to bed and wake up at the same time every day, even on weekends and vacations. Consistency strengthens the body's sleep-wake cycle.
Magnesium Before Bed: Magnesium supports relaxation and sleep quality.
Evening Journaling: If my mind is racing at night, I do a "brain dump" by journaling before bed or a meditation.
I Use Sleep Tracking Devices: I use tools like the Oura Ring and 8Sleep device, which are incredibly helpful for tracking sleep metrics. I use the data to understand my sleep patterns better and make adjustments if needed.
Cut Out Caffeine: I eliminated caffeine to tap into my body's natural energy reserves. Going cold turkey is challenging, so I recommend a gradual reduction. If eliminating caffeine isn't feasible, consume it only before noon to minimize its impact on sleep.
You can read more about Noelle on her app, BrightlyThrive, The Autoimmunity Community.
I hope the tips provided by Noelle will assist you in your endeavor to improve your sleep. Please feel free to leave any questions or comments for me regarding what has worked (or has not worked) for you to achieve better sleep or any other topic that may be on your mind. As always, I am here for you!
NOTE: This post is for informational purposes only; I have no affiliations or partnerships with BrightlyThrive or Noelle Creamer. Please consult your doctor before taking any medications or alternatives for any reason.
MS, Aging, and Why This Milestone Birthday Matters
As I approach my sixty-fifth birthday, I'm taking time to reflect on the significance of this milestone. I consider it a personal victory, having survived multiple sclerosis and other complex challenges over the decades. The song "I'm Still Here" by Stephen Sondheim has been playing in my head, reminding me that I've been through a lot, and I'm still standing where I've always been. HERE.
"Good times and bum times, I've seen them all, and, my dear, I'm still here."
When my first neurologist explained I had something called multiple sclerosis, he ended the consult by adding that, on average, people with the disease live seven years less than the general population. Gulp. Ordinarily, that last piece of information should have horrified me, but this totally naive twenty-eight-year-old pushed it aside, like Scarlett O'Hara, to think about tomorrow. I was having too much fun with no time to stop for any illness.
Fast forward to the present, and I thought about that neurologist's words about life expectancy, and you know what? F*** him. I have science and thirty-seven years of solid MS research and clean living on my side. So, I'm celebrating this birthday and every birthday to follow!
It's amazing how much progress has been made in the field of Multiple Sclerosis (MS) research since my diagnosis in 1986. With the availability of dozens of MS medications and improved diagnostic methods, the statistics regarding life expectancy are constantly evolving. Today, I feel more optimistic than ever before. I'm older and wiser now, and I know that dwelling on what I was told about MS and life expectancy all those years ago is not helpful. Instead, I focus on the positive changes that have been made and the possibilities for the future.
Each day is a gift; we should never take that for granted. I'm determined to focus on what's important and keep moving forward by working on my bucket list items enthusiastically and joyfully. YEAH!
That's reason enough to rejoice as I live a life of purpose, passion, and fun!
Ten years ago, when I was getting ready to celebrate my fifty-fifth birthday, I came across a story about a younger woman who refused to disclose her age to anyone. She even made family members promise to keep her age a secret. I wondered why she wouldn't want to live authentically. I felt so strongly about it that I wrote an article for The Huffington Post.
Women face enormous societal pressures to maintain a youthful appearance. That pressure is reinforced by various mediums such as magazines, television, and advertisements, often promoted by cosmetic and apparel companies. These industries capitalize on the ridiculous narratives about aging.
As women, we should embrace our unique selves and realize that our age and experiences make us beautiful, attractive, wise, and worthy. Every fine line and age spot is a testament to our life journey and the wisdom we've gained. Would I want to be twenty, thirty, or even forty again? Not a chance. So, instead of "aging," we should say "pro-aging" to celebrate the beauty and grace of getting older.
Living with a chronic illness can be challenging, especially as you get older. Every morning may bring new symptoms, and it's difficult to know whether the disease, aging, or both cause them. Determining which search terms to find reliable answers, deciding which doctor to consult, and determining whether a symptom requires medical attention can be overwhelming. Sometimes, you may even wonder if a symptom is all in your head.
I've learned the key is to keep asking questions until you feel comfortable with the answers. I rely on credible websites and keep an open mind about complementary medicine. Never stop reading, learning, being curious, and evolving. That's the best advice I can offer.
I want to finish this post by sharing something I wrote that caused quite a stir on social media. It's from my heart to yours. Always.
My smile hides the invisibility of my illness.
It hides the 13,914 days I've lived with this damn disease.
And all of the symptoms and comorbidities that followed.
It hides every piece of crap advice I've been told to "overcome" MS.
And (the sometimes) lack of support and research for patients over 60.
Despite all of this,
I smile because I choose to be intentional about how to live my life.
By spinning gold out of straw.
Joy after tears.
Sunshine after grief.
And gratitude after waking up each day.
No, I am not a Pollyanna or a character out of "Tom Sawyer" who's trying to whitewash the truth of living with MS.
This works for me; at least, it has so far.
I'll be 65 this week, and I've lived with MS since I was 28.
So, I know a thing or two.
I want to tell you this:
For all of you having a hard time with whatever adversity you're facing,
Take it one day at a time. One baby step at a time. There's no right or wrong. And no time clock.
Step through whatever you're facing; there's no going around it. That doesn't work.
And when you're ready, I mean really, really ready,
I'll be right here waiting.
And I hope you'll send me a smile back.
.
Peace to you all, with loving hugs and a healing prayer for good health. xoxo
How One Act of Kindness Changed My World and Can Change Yours Too
Welcome back to An Empowered Spirit! Before I explain my absence over the past few months, I'd like to say...
I hope you had a wonderful holiday season. The holidays can be a mix of joy and stress, so I hope you find many moments of hope and happiness throughout 2024.
Now, to explain my absence...
In 2023, I faced several technical issues with my blog, which made it impossible to use. Recent updates to An Empowered Spirit were the cause, and I was clueless about how to fix it. I contacted several webmasters for help, but their fees exceeded my budget.
With each passing month, I felt lost and unsure about what to do. This blog means a lot to me; it's become part of my identity. I've put a lot of time and effort into it to establish myself as a trustworthy source of information for both MS patients as well as those who don't have MS. Comments from familiar and unfamiliar readers and kind words from those who've since passed away hold a special place in my heart. The thought of losing it all weighed heavily on me.
Out of the blue, a woman I met once at a conference in Dallas noticed a comment I had made on social media. She saw how upset I was about my blog's failure and immediately contacted me to offer assistance. Given her outstanding reputation, I felt confident I could rely on her and gratefully accepted her kind offer.
I must have had an angel on my shoulder that day because her kindness was unexpected and filled my heart.
Due to her full-time job, she couldn't continue working in the advocacy field. However, she decided to help a few select advocates, such as myself, who were experiencing issues she could fix. That's her way of paying it forward! This was an exceptional act of kindness from an extraordinary lady.
I'd like to publicly express my gratitude and thankfulness to the fantastic Megan Starshak for her generosity and hard work in getting my blog back up and running. You did an incredible job. Your good heart and dedication are truly appreciated. Crossing paths with you was a blessing.
We live in a chaotic world where acts of kindness seem to be getting fewer and fewer. Turning on the news, reading headlines, and scanning social media can make us anxious, scared, and vulnerable. According to the article "Media Overload is Hurting Our Health" by the American Psychological Association, an oversaturation of news either from media outlets or social media can cause, according to various studies, stress, anxiety, depression, or even PTSD symptoms. It can even, according to one doctor, decrease your resilience.
If you've experienced any of this, you're not alone.
What works to lessen my anxiety is setting specific limits. I usually watch the news in the morning while having breakfast, just enough to know the day's top headlines. In addition, I subscribe to a daily newspaper and read some featured sections, such as editorial/opinions, book reviews, arts, and other features, to balance out my news consumption.
But now I'd like to talk about the importance of kindness in the world. While I understand that acts of kindness can't solve all the world's problems, small or big acts can undoubtedly make a difference in people's lives. For instance, Megan's kindness towards me and my blog has significantly impacted me. It boosted my confidence and happiness, making me feel cared for and valued. That is no small achievement.
Think how one gesture can ignite a chain reaction of positivity that changes countless lives. The ripple effect is that an entire chain of positivity can eventually be felt worldwide. Can you imagine that?
Here's an example:
Megan updated my blog out of the goodness of her heart.
I spoke to an MS advocate who asked for advice and inspiration about growing her business within the MS community.
That person, let's say, offers free classes within her specialized business to a few lucky people.
These random people help one or more people in their areas of focus.
And so on and so on.
Do you see how that ripple effect can help countless lives? I know you do!
In 2024, we need more acts of kindness to bring about positive change in our world. Extending a helping hand to those in need in any way possible can make another person feel less discouraged and more hopeful. Let's spread positivity and make the world a brighter place for everyone. We need that desperately.
I wish you all the best in 2024—a virtual toast for more peace, love, and laughter.
NOTE: Health Central published an inspiring article about Megan Starshak's journey with ulcerative colitis at age 18 and how she found strength and courage along the way.
Oh, by the way, I wrote a very well-received post in 2023 about five words to help you feel healthy and balanced. I hope you'll take a look!
The Insider's Guide to Four People to Follow While Living With MS
It's been a few months since I've written a blog post, and I've missed being here with you. There are endless reasons why I had to step away. For now, I'll tuck those away for the sake of this blog post.
EXCEPT to say I've had headache-worthy problems with my blog.
You probably noticed slow-loading issues with An Empowered Spirit; for that, I apologize. I needed help (and still do) to fix AES and couldn't find anyone qualified who wouldn't charge buckets of money. Yikes. So I'm working my way through eleven years of posts for possible broken links, photograph sizing corrections, and changing content style that no longer feels right.
I'm cleaning up eleven years' worth of blog posts so it won't move at a snail's pace.
In the meantime, I thought I'd share some information (which I love doing!) about four people I've come to rely on in my journey with MS. I think you'll quickly see their value as you manage your journey:
** Acquaint yourself with the brilliant Gavin Giovanonni, a/k/a Prof G. I highly recommend following him on Substack. Here's one example:
MS (Research) Selfie, NHS strikes: Implications for the future management of MS: Are consultant neurologists dispensable when it comes to the management of MS?
Check out Professor G. and subscribe to stay on top of his cutting-edge work!
A beautiful, wise owl
Mindfulness while walking is restorative
** Cory Muscara is a former monk. Today, he's a mindfulness teacher and international speaker on presence and well-being. I found him through Mindfulness.com during a particularly emotional time and signed up for his free daily texts. They cover mindfulness, self-sabotage, happiness, behavior change, and mental health. Cory's wisdom has been reliably helpful, and if you follow him, I hope you find the same. Let me know what you think!
** Dr. Aaron Boster is a highly regarded neurologist who is well-loved within the MS community. Dr. Boster wants to "make MS boring by providing you with the knowledge you need between visits." He breaks MS down into easily understood terms and does it entertainingly. Check out his YouTube channel! We are fortunate to have him in our corner.
The fabulous Brittany Quiroz a/k/a A Hot MS
** The upside of being part of the MS community is meeting fellow disability advocates. Living with MS can leave you feeling vulnerable, sad, lonely, and frightened. That's what an unpredictable disease can do to you. Thank goodness others are walking in similar shoes who "get you" without the need to explain what it's like living with the disease.
One such advocate I have the privilege of getting to know is Brittany Quiroz, or as she is better known, A Hot MS. Brittany is a remarkable woman of great character who lives with comorbidities, including MS and breast cancer. That doesn't stop her from using her talents for the greater good. Aside from her advocacy work, she's a gifted artist and singer and uses both to benefit patients through her charitable work. She's a force of nature with a heart of gold, breaking the glass ceiling by using her authentic voice about her journey. Please do yourself a favor and check out her blog to learn more about Brittany. I guarantee you won't be disappointed!
That's it for now, ladies and gentlemen. Thanks for the pleasure of your company and your compassion and understanding that a bit of rain must fall into each life, and sometimes it falls in buckets. It's just part of being human.
MS Awareness Month: Creating an Inclusive and Compassionate Society
As an advocate, I speak to people in the MS community every day. We chat about our disease and what it's like living with it. One wish I often hear is for the able-bodied community to better understand what it's like to live with MS.
I don’t know about you, but I think of my life in terms of chapters, except my chapters aren't arranged in numerical order. Instead, they're divided into two categories, before and after diagnosis.
Before my MS diagnosis, I could ride a bicycle for miles and miles. In the summer I'd play softball, basketball, or kick-the-can from morning until sundown. When my husband, a devoted tennis player, and I were dating he'd give me tennis lessons. Of course, he beat the pants off me, but we always had fun.
Looking back I didn't realize what magical days those were.
It’s been a long time since I could run, ride a bike, or walk endlessly. I miss those bygone days.
2014. I always felt so free on my bike.
No matter what "type" of MS you live with life is constantly a challenge. After losing any ability, such as walking, your days can be frustrating, maddening, and completely heartbreaking.
In time, some people can learn to live with their new normal while others can't. It's a tricky road we travel.
Over the years I've made a conscious effort to hold Jon Kabat-Zinn's quote close to my heart:
"There's always more right with you than wrong."
It sounds trite but it works for me to keep that beautiful sentiment in mind.
Zinn's wisdom gives me hope for better days ahead.
The way I figure it, no one escapes this life without facing some sort of adversity. MS was simply the hand I was dealt.
There are better days than others but when they're tough I've learned to meditate and focus on what I still can do.
I can work. I can speak. I can walk. I can swim. I can drive. I can stand. I can talk. I can laugh. I can dress. I can write. I can think.
And I can feel grateful for all of these blessings.
I want you to know that whenever you see me you're seeing the best possible version of me. I rest when my body tells me to, which is quite often, and I can safely say that most people in the MS community do the same.
Some of us choose to take medications specifically designed for our MS (called disease-modifying therapies) to hopefully put the kibosh on disease progression. Some work for us, and some don't.
We're called the "snowflake disease" because no two people have MS alike, and none of us react to medications in the same way.
We can feel okay one day (or days) and lousy the next day (or days). It's a very fickle disease!
Symptoms of MS can include pain, bladder, bowel and cognitive dysfunction, vertigo, weakness, numbness, optic neuritis, insomnia, dizziness, spasticity, fatigue, depression, and anxiety.
And the comorbidities that often accompany our MS diagnosis, such as various autoimmune diseases, gastrointestinal diseases, vascular and cerebrovascular diseases, chronic lung disease, and vision problems.
Instead of seeing us as an extension of our disease, I hope you'll look at us for who we are. We are made of beautiful hearts, souls, and minds.
We're so much more than what meets the eye.
A bunch of MS advocates hanging out and having fun together! I love our community.
Thanks for listening and for taking positive steps toward creating a kinder, more inclusive, and compassionate world for everyone.
NOTE: Click MS RESOURCES at the top of this page to learn more about MS. Thank YOU
Why I'm Thankful For My Multiple Sclerosis Diagnosis
The following originally appeared in The Huffington Post in 2015 for MS Awareness Month. A few minor changes were made to reflect how I continue to feel in 2023 about living with MS.
The philosopher John Lennon famously wrote, "Life is what happens when you're busy making other plans." The life we imagine for ourselves isn't always the one we get. Our paths can take sudden turns down unexpected byways, leaving us to battle unchartered territory.
March is MS Awareness Month, a time to remembertheover 2.5 million people worldwide living with an unpredictable and incurable disease called multiple sclerosis.
Strength, resilience, hope, and courage are important words to remember while thinking about the MS community.
And of course a cure.
As February drew to a close I didn't know what to write about to honor this important month. How could I put a positive spin on a disease that's often an unrelenting taskmaster?
At the same time, I've always tried to look for a silver lining in any situation, despite any challenges.
That's part of a sound mental wellness plan.
Then it hit me! As an obsessed fan of classic films such as "It's a Wonderful Life," I thought about Clarence...you know, Clarence the Angel.
Like Clarence granting George Bailey the ability to see what life would have been like if he'd never been born, I wanted to write how different my life would have been without my diagnosis.
I would never have known the joy and unconditional love of dating someone who proposed marriage to me despite my recent diagnosis. (This year is our 35th wedding anniversary!)
I would never have felt the unconditional compassion and understanding of family and friends who love me at my best and worst.
I would have missed out on knowing extraordinary nurses who went above and beyond anything they learned in nursing school.
I wouldn't know MANY extraordinary people in the MS community, and other health-related communities, who continue to inspire and educate me through their examples.
I would not have had a reason to use my love of writing to inspire, educate, and empower others to live, as best as possible, a positive life after a difficult diagnosis.
I would not have had an opportunity to write for health-related websites and online publications that allow me to write about something I feel passionate about.
I would not have had a chance to be a speaker and a consultant for many organizations where I'm free to speak about MS from a patient's perspective.
I wouldn't have had an opportunity to speak about ability and disability to people who've made a tremendous impact on the world. Alan and Arlene Alda, Ken Burns, Goldie Hawn, Mrs. Gene Kelly, David McCullough, Diana Nyad, Cokie Roberts, and Steve Wozniak, to name a few. I "name drop" only because I respect and admire each of them for stepping beyond their creative work to make a difference in the lives of others.
I wouldn't have been able to teach my son, by example, that disability doesn't mean inability, and that tolerance, compassion, and understanding always matter most.
I look forward to the day when I can finally say, "I used to have MS." That will be the greatest day of all.
MS is something I'd never wish for, but as a friend once said to me, " You're part of a club you never wanted to be in, but since you are, you may as well be one of the cool kids." INDEED.
So I'll be mindful that despite my diagnosis I'm surrounded by many blessings.
And, like George Bailey, I cannot be a failure because I have many wonderful, caring friends - both near and far.
I'm thankful for my diagnosis because it taught me self-compassion, survival, the importance of careful research, and always keeping hope in my heart.
My best friends, my husband, and my son.
ABOUT MS AWARENESS MONTH:
National MS Education and Awareness Month is an effort by the Multiple Sclerosis Foundation (MSF) and affiliated groups to raise the public's awareness of multiple sclerosis. The vital goals of this campaign are to promote an understanding of the scope of this disease and to assist those with MS in making educated decisions about their healthcare.
To learn more about MS from various MS organizations please check the list of MS RESOURCES located on the tab at the top of this page
Elizabeth Gilbert and How Five Words Can Help You Feel Healthier and Balanced in 2023
As the year draws to a close I'm remembering the buzz a few years ago about Elizabeth Gilbert‘s Happiness Jars, an idea she made for herself and others to be healthier and create self-awareness about even the tiniest of blessings in our lives.
For 2023 I'd like to get in the habit of writing what I'm grateful for, from the slightest good on a bad day to the best on a good one.
I set aside a pretty glass jar.
Gratitude is a way of fostering positive emotions that could help us achieve greater health, build our inner strength to face adversity, and nurture stronger relationships. Sounds worth it, doesn't it?
"I don't have to chase extraordinary moments to find happiness -- it's right in front of me if I'm paying attention and practicing gratitude." -- Brene Brown
I used to make New Year's resolutions but by the time the second or third week of January rolled around they'd be forgotten.
As I round the corner to my 64th birthday and my disability becomes more aggressive I want to start carving out more ME time. Focusing on gratitude sounds like the perfect way to get that started in the new year.
At the close of each year, there always seems to be chatter about choosing a single word to focus on the following year. The word you choose will allegedly be your guide to focus on to reach whatever goals you set for yourself.
Happy. Achieve. Listen. Balance. Commitment. Strong. These were all popular choices in the past. I tried to think what my word would be.
One word. One word. One word.
As I thought about it I finally got frustrated and tired of the whole thing. So I tucked it away for the time being.
But soon after it dawned on me that the one-word idea was total rubbish, creating more anxiety than it was worth.
Maybe using several words is a better idea. Let me explain below:
One day I ran a few boring errands, like going to the DMV, the pharmacy, and the usual roundup of Target, Whole Foods, and Trader Joe's.
Despite feeling tired, I'm always mindful that I'm blessed with a husband who accompanies me. He drives us, carries the packages, walks the outer aisles when my legs are weak, asks if I'm okay, makes sure of my safety, and never complains about the extra work he's had to assume in recent years.
I tore off a large piece of paper to write my first jar entry:
Errands with my husband and feeling very loved.
For 2023 I want to fill the Happiness Jar with phrases and ideas instead of one word. And if I miss a day, that's okay. When you live with chronic illness or any adversity you don't always have the energy or desire to think about the jar.
Elizabeth Gilbert's jar is a way to be thankful for our lives, despite any rough patches. It should never cause negativity. Go easy on yourself if it's been a rough day. You have enough going on. Tomorrow is another day.
Here are some of my FAILED WORDS from the past and how I've turned them on their ear.
Feel free to tweak your own (or use mine) to suit your own needs:
Diet: It’s time to slim down by removing any toxicity and choosing healthy social and professional relationships.
Exercise: I vow to exercise my mind by reading the pile of books on my night table. I'll stretch my brain by learning new skills and will incorporate holistic therapies to achieve inner and outer balance.
Faith: I'll trust that things happen for a reason and that I'm in the exact place I'm supposed to be. I'll trust that I'm doing the best I can within my abilities and will have faith that my best will always be good enough.
Courage: I'll look at myself in the mirror without focusing on any wrinkles, extra pounds, and alopecia but instead see a mature woman using her adversities to thrive and do my best to help others do the same.
Relax: I'll unclench my jaw, learn to breathe (4-4-4), and live more fully in the moment. I'll spend time listening and learning from others, relaxed in the knowledge that doing so is where the magic begins. I won't take anything for granted. The past is the past, the future is an unknown, so let's focus on today.
When we open our eyes each day that, in itself, is a wonderful gift.
I hope in 2023 YOU'LL be blessed with inner peace, light and love, and better health.
Thank you for being here in this space with me. I deeply appreciate having you by my side on this journey. Be safe and stay well. Namaste.
Four Ways To Find The Inner Peace You Need When MS (And Life) Are Wearing You Down
Welcome back! It's been a while since I published a blog post so I'm thrilled to have you here! Thanks for stopping by.
I took the summer off from writing when it became apparent that I needed a break. It was time to focus on my inner peace.
I tell others with MS to listen to their nudges, those internal grumblings trying to push you in the right direction. Nudges are (very) smart guides vying to grab our attention away from the noise and nonsense going on in our heads.
(We all have racing thoughts that play over and over again ad nauseam. They aren't real! Here's a meditation from the wonderful Tara Brach to help us quiet the mind.)
This summer I took my own advice and listened to my nudges.
The course of my MS and comorbidities were knocking the wind out of my sails.
The revolving door of doctor appointments and tests, not to mention (but I will) calling and calling and calling medical offices for a response, was driving me crazy.
It became a full-time job.
"When you're caught in a familiar reaction, stop, take a deep breath, feel what you're feeling and ask, "How would a wiser version of me respond at this moment?" ~Cory Muscara
There were a few personal hurdles that were also troubling me. They weighed heavily on my heart. It was time to find emotional balance and mental wellness.
I returned to therapy.
I love my therapist. She's an excellent listener and an expert psychologist who is worth her weight in gold.
Another unsurprising component of my need for time off is the state of our chaotic world. It becomes more unnerving every day and sets me on edge. I know I'm not alone in this!
Now I watch the news in the morning, read The New York Times, and that's it for the day. Otherwise, I have nightmares about the violence and hatred penetrating our society. I stay informed, but self-care is the priority. Stress is an enemy of MS and is unhealthy for everyone.
So summer was a good time for introspection and wellness.
"These mountains that you are carrying, you were only supposed to climb." ~Najwa Zebian
Ignoring our nudges leads to deeper wounds that become more difficult to repair later on.
So I took my own cues seriously. I carved out time to be still, to recognize my wounds, be patient with them, and be willing to process difficult feelings from the past. (Here's a good article on 8 tips to heal emotional wounds from PsychCentral.)
It's not easy as you slowly go through the process of trying to heal your wounds. Many unresolved emotions can be tough to deal with. But it's necessary if you want to move forward.
When the mind and body are in disharmony nothing in life makes sense.
I decided to journal about my healing plan. This held me accountable to my goals and writing felt cathartic. Here's what I did this summer:
Meditation.
Nature walks.
Advocacy work that included many initiatives for the MS community.Meaningful conversations with loved ones.
Doctor visits and having my list of questions answered.
Physical therapy.
Chair yoga.
Educational webinars.
Reading for pleasure.
Nurturing close relationships.
Hugs and more hugs.
Do you take time to tend to your emotional needs or do you let things slide, thinking they'll magically disappear?
Do yourself a favor. Commit to a plan to slow down, do breathing exercises, and de-stress whenever you need to!
I can remember stressful events from every decade of my life, and I bet you can too. So, remember these four ways to find the inner peace you deserve:
Give yourself permission to slow down.
When you feel out of balance schedule some "me" time to recharge and reset.
Make yourself a priority. No one and nothing is as important as you.
Your physical and emotional needs are equally important. Tend to both of them as much as you'd tend to the people you love.
"A house divided against itself cannot stand." - Abraham Lincoln
(I know I'm stretching the point from this quote but I don't think Honest Abe wouldn't mind.)
I hope you found this blog post helpful. I'd love to hear your thoughts so please leave a comment.
Until next time I wish you peace and good health
Aging with MS and How YOU Can Manage Your Journey
When my neurologist diagnosed my MS over three decades ago my parents urged me to get a second opinion. I agreed wholeheartedly.
The second neurologist, who came highly recommended, quickly confirmed the diagnosis, then casually added:
"On average people with MS live seven years less than the general population."
I thought my head would explode...from the diagnosis, the doctor's (ahem) bedside manner, and the mic drop about MS and mortality. Jeez.
With limited information at my disposal in those pre-internet days, I was desperate to research credible information to validate (or invalidate) the doctor's opinions as well as the many other "truths" people felt compelled to tell me.
Knowledge and self-advocacy are power.
I made a pact in those early days to educate myself and those in the MS community with absolute truths about the disease.
We deserve nothing less.
So here's part two of my series on AGING AND MS. (In case you missed part one please click here.)
I'm sharing another leading resource I rely on for outstanding support and services.
Since 1970 this nonprofit organization has lived up to its tagline "improving lives today."
I highly recommend perusing their website to learn more about what MSAA can do for YOU.
Over the years I've gotten to know the President and CEO of MSAA, Gina Murdoch. Leading with compassion and commitment to the MS community, Gina graciously agreed to answer a few questions about aging and MS.
WAIT! STOP!
Don't turn away because you think, "I'm not 50 yet so this doesn't apply to me."
It certainly does. If not today then someday. Do yourself a favor and keep reading. Some of the links below might even help you RIGHT NOW.
I promise it's worth your time to keep reading.
Let's begin with a quote from Gina Murdoch about aging and MS:
"The MS journey has many challenges and aging with MS is certainly one of them."
Cathy: How has MSAA included the over 50 demographic?
Gina: All of MSAA's programs, core services, and initiatives are available to help those living with MS wherever they are on their MS journey. MSAA's programs and services are inclusive of those living with MS over the age of 50, and specifically include:
MSAA's Helpline:
MSAA provides a toll-free Helpline and Chat that enables individuals with MS, family members, care partners, and friends to speak directly with one of MSAA's experienced specialists. MSAA's Helpline routinely assists those seeking help on topics related to aging and MS.
MSAA's Equipment & Cooling Distribution Programs:
MSAA's Equipment & Cooling Distribution Programs offer products for individuals who need cooling equipment or devices designed to improve safety, mobility, exercise, and daily living capacity.
MSAA MRI Access Program:
The MRI Access Program assists with the payment of cranial (brain) and c-spine MRI scans for qualified individuals who have no medical insurance or cannot afford their insurance costs and require an MRI to evaluate current MS disease progression.
MSAA's Educational Resources:
MSAA's educational programs cover an array of topics featuring leading MS healthcare professionals and include issues that impact individuals living with MS over the age of 50.
Some recent highlights that specifically address aging with MS include:
* * Community Views: Aging Fears with MS (a blog post by MultipleSclerosis.net posted on MSAA's MS Conversations blog - 3/30/2022)
MSAA is currently partnering on research and educational initiatives relating to menopause and MS and is looking to address the issue of aging with MS in a future issue of The Motivator magazine.
My thanks to Gina Murdoch and MSAA for the very fine work they do for our community.
NOTE: Since I mentioned MS and longevity at the start of this post here's some information I gathered for you on the subject. I know this isn't the happiest of topics but please keep in mind that statistics can't possibly measure our unique MS situations. Be sure to check out the links below to Gavin Giovanonni's and Dr. Hendin's articles:
Here's a post Gavin Giovanonni (Prof G) shared with me that puts this subject into a better perspective. Written by Stephen Jay Gould, Ph.D. it's titled "The Median Isn't the Message" and I HIGHLY recommend reading it.
According to this WebMD article, Dr. Barry Hendin finds great cause for optimism about longevity and MS.
My two cents: No two people with MS have it alike. Genetics, stress, environment, what we eat, physical activity, comorbidities, mindset, medications, etc. all play an essential role in our lives. One size of statistics does not fit all. Read, research, talk to your doctor and your community, ask questions, and make your own informed judgment. For me, no set of stats will restrict me from living the best life I possibly can within my abilities
I hope you enjoyed this post. Please feel free to leave any comments or questions below. I truly enjoy hearing from you!
When Beauty and the Beast Collide
The BEAST that's lived in my body for more than half of my life started to erupt over the last few years in unsettling and disruptive ways. The odd thing is that, for the first time in my MS life, I'm experiencing the denial phase that typically begins after a diagnosis.
It's been a wake-up call to come face-to-face with the harsh reality of MS, possible progression, and aging.
Life never follows a straight line.
When I first learned I had MS I hadn't a clue what was in store for me, the unexpected detours and undeniable disappointments that could lie ahead.
When you're young, and there's no internet to provide millions of reasons to worry about your future, you think you're invincible despite a medical condition.
What probably saved me from any mental hiccups was my fertile imagination, and the ability to jump into a daydream whenever I needed an escape.
Real-life problems were something that happened to others. I felt safe and healthy inside my self-created cocoon.
Ah, youth.
I was fortunate to have two loves I could lean on for support.
One was an obsession with black and white films. Their Hollywood happy endings and bigger-than-life actors provided me with a haven. They'd transport me to places I never wanted to leave.
James Stewart, Cary Grant, and Katharine Hepburn in "The Philadelphia Story"
The second love was immersing myself in nature, spending hours and hours in the natural world of animals and plants.
Growing up in a home surrounded by woods I fell in love with the nighttime sound of crickets, watching the change of seasons, and the perfection of wildlife outside my door.
Nature taught me crucial lessons that still serve me well:
Classic films and the natural world are like old reliable friends who always have your back.
I wish I could bottle them as a panacea for the world's problems.
"If there's a single lesson that life teaches us, it's that wishing doesn't make it so." ~Lev Grossman, The Magician
As I look back at my younger self, a wide-eyed twenty-something living with a disease, I realize how much I've changed.
Time has taught me the value of setting boundaries, ending toxic relationships, accepting truths, traveling through grief and pain, and struggling with the loneliness that comes with chronic illness.
It's a gut punch being unable to keep up with the rest of the world.
As a teenager, I felt a kinship with Henry David Thoreau after reading "Walden" about simple living in natural surroundings. He wrote his "life in the woods" while living in a cabin he built near Walden Pond in Massachusetts.
I'd kiss Thoreau on the cheek if I could thank him for all he's meant to me.
"Although truth can be found in literature, it can also be found in nature." ~ Henry David Thoreau
Living with MS has never been easy but as I passed my sixtieth birthday, and felt overwhelming personal and physical changes, I saw life through a clearer lens.
Like a butterfly emerging from a cocoon, my metamorphosis was eye-opening and deeply challenging.
"Life is a succession of lessons which must be lived to be understood." ~Helen Keller
The BEAST of MS can be painful, unpredictable, and disturbing.
As hard as it is I still believe there's a silver lining to any situation if you look for it. What was mine?
The silver lining was realizing it was about time to start preparing for the inevitability of life's ups and downs. I decided to begin by:
Diving into the inner work of self-understanding and self-exploration to create a healthier life.
Committing to holistic practices to become more grounded while reducing worry and anxiety.
Finding hobbies or interests to keep the mind engaged and relaxed.
Devoting myself to the list below is something that's within my control.
Now that's a silver lining!
(NOTE: I have no affiliation of any kind with the links below. I provide them for your enjoyment and hope you'll take the time to explore them for yourself) :
With so much going on in our lives my wonderful husband instinctively knew how to lift my spirits. After 34 years of marriage, we can read each other's hearts.
He took me on a trip to the New York Botanical Gardens and their gorgeous (a/k/a BEAUTY) orchid show!
It was absolutely ah-may-zing. A completely magical day.
The BEAUTY was in the flowers, and the love, that I felt that day. I will never forget how special it made me feel.
Find something big, small, or anything in between that puts a smile on your face. Whatever it is it's what's right for YOU.