Stories of Inspiration
Sent in by readers of The Motivator
Edited by Susan Wells Courtney
The inspiring stories to follow have all been written by individuals whose lives are affected by MS. Each person talks about his or her unique situation and offers a special perspective on life with this challenging disorder. Many are devoted to their family, friends, and faith. Many have found a positive side to being diagnosed with MS, having discovered that wonderful silver lining hidden within their new situations.
Please note that due to space limitations, only a portion of the stories received could be used, and these have been edited for publication. Those stories not appearing may be saved for future articles. Many letters made religious references, and in most cases, these have been edited to read as one’s “faith,” to respect all readers of different faiths and beliefs.
Some stories talk about diet, exercise, and medications. As always, readers are cautioned not to make any changes to their routine or lifestyle (including diet, exercise, and medications) without consulting their physician. Even though we have everyone’s permission to print his or her story, please note that with the exception of the opening story (written by a volunteer writer for MSAA), only first names have been used to protect each person’s privacy. Stock photos have been used throughout and are not intended to resemble any specific person, place, or thing.
Please enjoy these stories of inspiration sent in by readers of The Motivator!
- Not Letting MS Get The Best Of Me
- I may walk slowly with a cane, but spiritually, I can run!
- Family, friends, and faith
- Diagnosed at 70; that’s good news!
- All of their prayers supported me
- I used to say, “I can’t do that” …and now I say, “Yes, I can!”
- Everyone needs someone who understands
- My two blessed creatures, ‘Chin-Chin’ and ‘BJ’
- My Valentine
Not Letting MS Get the Best of Me
By Sheri Horn Hasan
Volunteer writer for MSAA
An illness such as MS can often impose limitations beyond our control, restricting our options in terms of treatments, activities, and lifestyle. To dwell on what we no longer have, versus looking forward to the things we may still enjoy, can have a devastating effect on our outlook on life. The determination not to let our MS get the best of us is a matter of choice within our control, and such a determination can help us to feel better mentally, emotionally, and perhaps even physically.
As we make our choices throughout life, we may find that this concept is often overlooked. Commonly referred to as the “power of positive thinking,” keeping a positive outlook cannot cure a disease like MS, but it can go a long way toward making each and every day not only bearable, but pleasurable as well.
“Not letting MS get the best of me” became my mantra in the early days of my diagnosis, and continues to be paramount in my mind even now. Sitting in my neurologist’s office nearly six years ago, numb from the waist down and having difficulty walking, was where I first heard the words, “multiple sclerosis.”
Like many others, I was told that I either had a back tumor, some form of general encephalitis, or multiple sclerosis. After my back MRI’s showed no tumor… a weekend in the hospital and one spinal tap later… and it was conclusive. I had MS.
Now what? Go home, learn all I can, and pray I can do my best. There’s no denying that fear was the predominant emotion running through me at that point. Although it was tough to digest, and tougher to believe that I might eventually recover the feeling in my lower body, be able to walk normally, and take care of my young son without succumbing to total exhaustion – it wasn’t long before I made several resolutions.
After five steroid infusions, a short stint in the hospital, and a month’s worth of oral prednisone that left me several pounds heavier, my first resolution was to eliminate the up-and-down weight problem I’d battled since childhood. After all, I reasoned, why make my condition more difficult by having to carry extra weight?
Secondly, I determined that I would strive to do my very best. For instance, as long as I had feeling in my lower extremities – which did return as I began to recover – I would work to use them to the best of my ability.
Finally, I told myself that I would not worry about what tomorrow would bring. I would live for today.
Now, I know full well that I cannot predict the future and say what tomorrow will bring. But rather than be frightened of the future, I determined then and there to take things one day at a time. I decided to deal with adversity if and when I experience it, and not before.
Having been diagnosed in 2000 was fortunate, as MS medications were available to me – unlike just seven years prior, when the first approved drug, Betaseron, was only available through a lottery system. And over the years four more drug treatments eventually were approved (Avonex, Copaxone, Rebif, and Novantrone).
Because of the timing of my diagnosis, I am thankful to be a part of a new generation of MS patients who are able to reap the benefits of available disease-modifying drug therapies. This, along with the rise in doctors treating MS and those researching its cause and possible cures, lead me to believe that the future looks bright.
I see myself happy in the years ahead; aware that I am doing all that I can to make my life even better than it was before my diagnosis. Perhaps by coincidence, perhaps by fate, I have learned to be a proactive person, learned what is important to me to be happy, and have followed my instincts along the way.
For example, since my diagnosis, I decided it would be healthier for me to leave an unhappy marriage, I decided it would be more fulfilling to go back to full-time employment, and I decided to keep myself as healthy as possible through diet and exercise. I realize that not everyone has these same opportunities available to them, but whatever circumstances we each face, the ability to make the best choices from among our options is a precious freedom within our control.
I have been extremely fortunate in that I have remained relapse-free since my initial diagnosis. While I would like to attribute my good fortune to being proactive and trying to maintain a positive attitude, I cannot say this with any real degree of certainty. But I do know that by listening to my body and my mind, I can better recognize the kinds of activities that might have a negative effect and possibly push me toward worsening symptoms or an exacerbation. Being aware of my limitations has helped me to avoid becoming more fatigued, depressed, or otherwise debilitated by this disease.
I count my blessings every day. I look back at what I have gained, partially as a result of my diagnosis. These things include my choice to live in a stress-free environment (and to witness my now 10-year-old son blossom and grow in such an environment); to participate every day in a fulfilling job; to maintain an active social life; and to pass along my positive experience with multiple sclerosis to others.
I continue to take things day-by-day. For me, there is no other way. I will work, exercise, and maintain a healthy diet for as long as I am able. In the meantime, like many others, I pray for a cure. I’m sure it will be forthcoming one day. Until then, I plan on being in the best place possible both mentally and physically, so that I can take full advantage of what the future holds. Most importantly, I remain determined in not letting MS get the best of me!
I may walk slowly with a cane, but spiritually, I can run!
By Dona from Oklahoma
My story is only one of many that need to be shared. When we share the great adventures of our everyday lives, we can encourage and inspire others.
I was “officially” diagnosed with MS almost 20 years ago. This was particularly hard news to hear, since my husband was disabled through his work as a firefighter, and I was the main breadwinner in the family. We had two young teenage sons to care for as well. Working both full and part-time positions in medical settings had apparently taken its toll on me.
Within a year of my diagnosis, my husband died, and then my mother passed away two years later. During these same years, my two boys both graduated from high school and joined the Navy – serving together on an aircraft carrier. The news on the TV was my first line of communication, as the two were now participating in the Bosnian war.
In 2001 I was called to a special adventure. I was part of an evangelistic mission trip to Portugal. One of the other participants also had MS, as did the pastor’s wife. This gave me an opportunity to provide information and encouragement. My MS had become a tool to help others.
The next three years brought three more mission trips: Russia in 2003, Canada in 2004, and Slovakia in 2005. I continue with helping others who are faced with health issues.
Traveling out of the country can be difficult, and some destinations – including Europe – are not always “handicap-friendly.” I am often given challenges; for example, without an elevator, I must pull myself up the stairs, and this requires steadfast determination. Life is full of hardships and challenges for us all, and my strength comes from my personal relationship with my faith, enabling me to carry on my mission. I may walk slowly with a cane, but spiritually, I can run.
MS has opened many doors for me to have a richer life than before. When we are faced with life’s hardships, those are the times when we grow. Let your life shine for others so they will see what strength really is. The joy for me is in my faith.
Family, friends, and faith
By Patti from Washington
I am a 50-year-old, divorced mother of two grown children. I was diagnosed with MS in my mid-40s. In addition to taking care of my health, the help I receive from family, friends, and my faith, enables me to stay active despite my MS.
I exercise, including low-impact water aerobics three times per week, walking one mile each day, and daily 15-minute sessions on my stationary bike and rowing machine. This keeps me mentally alert and physically fit. I also take one of the approved medications for MS. I give myself injections using the auto-injector and I don’t experience any side effects.
My family gives me support every day, and also assists me with chores such as shopping and laundry. I am involved in church activities – from teaching Sunday school to helping out with cleaning or decorating on Saturdays.
I am fortunate in that I am able to be involved in so many daily activities and continue to enjoy living in my own apartment. I strongly believe that I am able to do all of these things because of the help and support I receive from family, friends, and my faith.
Diagnosed at 70; that’s good news!
By Connie from Arkansas
I always knew that if I lived long enough, I would become famous for something! I am the oldest living newly diagnosed person at two different MS clinics. I was diagnosed three years ago at age 70 in Denver, Colorado.
When my first symptoms appeared – slurring words, stumbling gait, and moving in slow motion – a mild stroke was the first suspicion. With this in mind, my family practitioner sent me to the hospital.
After two days of tests, the neurology team came into my room to bring me the grim news. I did not have a stroke. It was multiple sclerosis. I startled them by breathing a sigh of relief and then starting to laugh. I tried to explain that they had just told me that I did not have a stroke, Alzheimer’s disease, Parkinson’s, cancer, or congestive heart failure. I could handle multiple sclerosis!
Suddenly, a lot of physical occurrences over the last thirty to forty years started to make sense. I had experienced the blurred vision, stumbling, periods of extreme fatigue, and one bad episode in 1985 when my right side became numb.
I was fortunate in that I chose dietetics for my major in college, teaching me how to eat healthy foods and to exercise. After a skiing accident, which led to six surgeries and a lot of nuts and bolts in both legs, I started swimming laps and attending water aerobics classes. I truly believe that water aerobics is one of the reasons I am still in relatively good shape at the age of 73. It is a wonderful program for keeping your muscles flexible and keeping you moving without additional stress.
Interestingly, my arms became numb about two months after I stopped taking estrogen tablets. I had read that a woman with MS feels very good when she is pregnant, at which time her estrogen levels are raised. I consulted a doctor friend, and despite information about potential heart problems, I went back on a low dose of estrogen. Within two months, my arms were no longer numb.
As for the memory loss, at my age it is difficult to determine if the memory loss is due to the MS or just old age. Most of my friends have similar problems. I simply buy more yellow stickies! (Also known as “Post-it®,” notes, used to leave little reminders around the house.)
Of course, I do need to prepare for whatever is ahead of me. I purchased a one-level house with no steps anywhere. I have taken doors off, put in sliding doors, hanging pot racks, slide-out shelves, and have generally made the home wheelchair accessible. My theory is, “If I am ready, it won’t happen; if I’m not, it will.”
I relate to Teri Garr, her symptoms, and her outlook; her story has convinced me that I am on the right track. I keep my eye out for new adventures, I keep laughing, I cheer up my friends when they get a sympathetic look, and above all, I surround myself with upbeat people.
I truly feel that in spite of the MS, I am a survivor, and one of the lucky ones! My husband says, “You are easy to live with 98 percent of the time!” I have a doctor who tells me, “You are in really good shape for the shape you are in!” And I have three sons who simply call me, “One tough old broad.” It doesn’t get much better than that.
Editor’s note: Connie’s decision to stay on estrogen is based on her own, personal experience; MSAA does not promote any specific drug or treatment; readers are cautioned not to make any changes to their treatment regimens without consulting their physician.
All of their prayers supported me
By Kimmel from Mighigan
I found out that I had MS about two years ago. I was in my late 20s, working full time, and going to school with the hopes of becoming a nurse. I did not have any time in my life for such a bombshell!
I came home from the doctor’s office and let the initial shock sink in… then I called my boss at the Diocese where I work. She was encouraging and understanding right from the start. She held an emergency staff meeting that day to tell the others in my department about my illness.
When I returned to work the next day, I went into my boss’s office. She gave me a hug and then we talked. Everyone in my department let me come to them when I was ready, which is good, because I am not the type of person who likes to talk about things that are bothering me.
All of their prayers supported me and gave me the encouragement that I needed to push through. Most of all, if it wasn’t for my boss staying by my side, I wouldn’t be the person I have become. To this day, everyone understands about doctor appointments, medications, and problems that do arise. I am truly blessed to work at the Diocese and to be surrounded by such supportive people.
I used to say, “I can’t do that” …and now I say, “Yes, I can!”
By Johnice from California
I am in my mid-50s, married, with one adult son and two granddaughters. My story has appeared in numerous magazines and on a daytime TV program, “Life Moments,” in 2002. I was diagnosed with MS 14 years ago, after having a fall.
Years before, I had experienced an inability to run in a straight line, and ultimately ran into a wall. I later had visual problems but eventually went a long time without symptoms. Then I began to notice that my mind would plan to go in one direction, but my body would go the opposite direction. I tried to keep this a secret, until I had a bad fall.
My leg was so severely broken that I was unable to walk or straighten my leg. A nearby store owner called my husband, who arrived with my son to take me to the hospital. Following some tests, the doctor informed us that I had MS.
This was the worst news I thought I could receive, because my father had MS, diagnosed in his 30s. He had a tough time, eventually passing away from a far worse diagnosis of leukemia. Thinking back, I can see that I too had symptoms of MS in my mid-30s.
Editor’s note: While MS is not hereditary, one’s risk is slightly increased if his or her parent has MS.
I am so grateful to my family and special friends who have stayed by my side throughout my ordeal. Following my leg injury, my health deteriorated rapidly. I could not walk or move, and at times, could not see, hear, or speak. At my worst, I looked to my faith to help me through some devastating times. I was in a hospital for a year, but eventually was well enough to come home and be cared for by my family.
A dear friend then told me of an MS center at UCLA. The staff thought I was a good prospect for their wellness program, and I became the center’s first member on the day their doors opened in 2001. Once each week I would spend five hours with a dedicated staff and supportive volunteers, pursuing a three-pronged strategy for wellness: physical, emotional, and recreational.
After five long years in a wheelchair, the physical therapists helped me to stand up and walk again. The doctors were amazed at my progress. Focusing on empowerment, the staff would often repeat mantras such as, “Focus on what you can do and not on what you can’t do.” Consistent, continual exercise is extremely important for individuals with MS.
In addition to going to the center, I attend intensive physical therapy three days per week. My goal is to walk on my own without a walker. I give a lot of credit to my doctors and also to the approved MS medication which I inject each day. I used to say, “I can’t do that” …and now I say, “Yes, I can!”
Editor’s note: While going to an MS center or rehabilitation facility can often improve overall health and wellness, one’s success is dependent upon several factors and results may vary.
Everyone needs someone who understands
By Linda from Virginia
I don’t have a cure for MS, but long after my symptoms began, I discovered a way of coping – by bringing a smile to someone’s face and heart. As I will explain later, everyone needs someone who understands.
My symptoms began in 1980, when I suddenly found myself unable to walk from the yard to the house. I didn’t know what was going on, but after it was over, I soon forgot about it. In 1992 I had neck pain and was off-balance. The neurologist told me I had a stroke or MS, but again, I ignored the symptoms. In 1997 my world was coming apart – this time, there was no denying the MS.
I felt as though I was being punished, but now I know that wasn’t true. I believe that there is a reason for everything, and it wasn’t until 2003 that I discovered something special: I had received a list of people with MS who wanted someone to write letters or send email. I was so excited to connect with people who had MS too. I didn’t realize it at the time, but a whole new world was about to open up for me.
I started by writing to 40 people in more than 20 states. I was so happy when I got my first letter! They didn’t all write to me at the same time, which makes it easier for all of us. I use a computer to help with the writing.
Then something hit me. Had I not gotten MS, I would have never met all of these wonderful friends, who are all special to me. One of my new-found friends draws cute little pictures for me, another says that my letters are like big hugs, and a third refers to me as her sister. I feel as though I have known them all my life.
Several people ask me how I select their names from the list – after all, there are many names to pick from. Well, I have a system. I look at their names, addresses, where they are from and what interests they have. Then something will jump out at me, saying, “pick me.” For instance, my son’s friend who passed away was named Anthony, and that’s why I picked a person who lives on Anthony Street. When I see a certain name, I just get this feeling that it is right.
I try to remember their birthdays, anniversaries, and holidays. Sometimes a special card will remind someone of something, bringing back happy memories. Sending cards brings a smile to the people on my list.
I started a scrap book with the first letter I received. I keep all of the stamps, cards, and special things on the envelopes. This scrap book shows the love they have for me and the love I have for them. When I am feeling down, all I have to do is look at my book, and this makes me so very happy.
My eight-year-old granddaughter would like to write to children and grandchildren of people with MS. She believes that she can make a difference. I am happy that she wants to do what I am doing to help others.
Now I have a new list of names. I am going to write 95 letters and 230 emails, going to people in 16 more states. It is so exciting for me.
Everyone needs someone who understands what he or she is going through. Everyone needs a friend. I hope that I can be that friend and help them in some small way to cope with their MS. I know that doing so certainly helps me.
Editor’s note: MSAA offers a Networking Program for individuals with MS and their care partners to promote new friendships and support. Please call MSAA at (800) 532-7667, or visit MSAA’s website at mymsaa.org for more information.
My two blessed creatures, ‘Chin-Chin’ and ‘BJ’
By Karen from Wisconsin
Ten years ago I experienced what people who are blind go through on a daily basis, and that is what optic neuritis felt like to me. Diagnosed with MS, I have been able to maintain my emotional and physical wellbeing by taking care of my two Shih Tzu dogs, ‘Chin-Chin’ and ‘BJ.’ They make sure I give them the love and attention that they so equally give back to me, and they have seen my good times and bad with this MS.
These two blessed creatures have given me the will and physical strength to keep fighting this battle. I will always be grateful to a higher power to have shared my life with them.
I would also like to express my gratitude to MSAA’s Networking Program. This program has introduced me to many new people, who serve not only as friends, but as philosophers as well. What a wonderful program you have given to house-bound clients with MS.
By Laura from Texas
As a young girl, late nights with friends were often spent dreaming of the man I would give my heart to. I had a vision of my husband. Like my father, he would be strong, handsome, and healthy; he would be my prince, and I, his princess. It all seemed too perfect to those around me.
Then one day, I met a young man with everything going for him, who happened to have multiple sclerosis. He was attractive and suave, all except his imperfect gait that only my mother, a registered nurse, would notice.
Pass him up? God had sent him especially for me. Eager to learn more, MS literature and support groups enabled me to explore how I could best help and encourage him. Amazed and gracious, he responded, “That is the nicest thing anyone’s ever done for me.”
Even though I enjoyed the support groups, I discovered that some could not understand my early devotion. One woman commented, “You aren’t married, you know he has MS, and you’re staying with him?” Her husband, having MS for many years, was controlling before his diagnosis; his unkind behavior worsened as his health declined.
I was confident our lives would be different. Modern medicine and advances in MS research were sure to help. Many years later and now married, I understand the soapbox from which she spoke. Dealing with this disease is tough. At times, he is physically weak and off balance, no longer healthy; yet our devotion is unchanged.
Whenever his symptoms worsen, I wonder where this road will lead. In times like these, I remember the words we committed to God: for better or for worse. I have never given up. Difficult situations are layered with soul-satisfying joy. Laughing, crying, praying, and hoping – all help to lessen the burden. Thinking good thoughts allows me to live comfortably just to the left of sanity’s fine line. Most of all, watching the courage, humility, and tenacity glowing from my husband’s soul keeps me welcoming tomorrow’s sunsets.
Day-by-day, we look forward to the future with hope, not worry. Riding this roller coaster, holding his hands in mine, I feel blessed despite my butterflies. My husband embodies what love is all about: patience, kindness, hope, and strength. In our book of life, MS will be a footnote, not the plot. I have found my perfect man.