Readers sound off on humor and cognition articles.
More stable, more beautiful
After reading “Self-portrait with cane” (Winter 2013–14) by Liz Ripley, I knew I had to write right away! I was diagnosed with MS in 2003, and a friend, now deceased, taught me to walk with her cane. I was grateful not to be falling down and “walking walls.”
But I, too, am a fashionista, and I require that my cane be fabulous, and so I own about 12 of them to go with a variety of outfits. My trainer at the gym looks forward to seeing which one I am going to bring. My friends and, yes, my dates, know that my cane is part of my ensemble. My cane is like my shoes: I wouldn’t wear the same shoes with every outfit, and the blingier the cane, the cuter I feel!
So check the Internet, check the drugstore. Buy yourself a new pretty cane the way you would buy a new lipstick or a new pair of shoes. You’ll walk and stand better, and that makes a huge difference in how you really look: more energetic, more stable, more beautiful.
Maxene Kupperman-Guiñals, New York
Mind over moods
I was pleased to read “Emotional Currents: The shifting tides of moods in MS” (Winter 2013–14). The University of Washington’s project, Take Charge of My MS, headed by Dawn Ehde, PhD, in which I participated in 2011, gave me valuable tools for coping with the many moods of MS. Two tools stand out for me:
- Rather than examining thoughts as positive or negative, reflect as to whether they are helpful or unhelpful. This way, they lose their judgmental perspective and we can learn to avoid recurring thoughts that interfere with our coping skills.
- It is unhelpful to believe that because I have MS, I must suffer. Yes, MS causes every uncomfortable feeling in the dictionary, but I was adding to my misery by believing I had to remain that way. Once I freed myself from suffering it gave me more energy to do those things I wanted to do.
Rejecting unhelpful thoughts and ideas has enhanced my skills for living well with MS, and freed my mind to grow in spite of MS—and given me some “aha!” moments that I am grateful for.
Maria Micelle-Simone, Missouri
An even greater education
Thank you for mentioning my brochure, “Your Education Rights as a Student with MS” in “A great education—with MS” (Fall 2013). The article states that extracurricular activities “for the most part” fall outside of the requirements of Section 504. This is not true: Section 504 covers any school program or activity, even if all or some extracurricular activities take place away from the school.
In addition, schools and colleges have the legal responsibility to stop Claire’s “mean” or prejudiced fellow students; Claire should file a complaint with the Office for Civil Rights, U.S. Department of Education. In fact, the majority of education discrimination complaints filed with OCR are disability complaints and are not based on race or sex.
Also, requirements of what a student must do varies greatly by grade level: A college student must be more proactive than when she or he was in elementary and secondary school. Know your rights and your school or university’s responsibilities as they differ by grade. I am pleased to see an article that assists parents, and students with MS, to understand education rights. We must realize that these students have well-defined civil rights and should not feel that they and their parents must take on extra burdens rather than exert their federal rights under law.
Jan Pottker, PhD, Maryland
The Society responds: Dr. Pottker is correct that any extracurricular activities provided by the school need to be compliant with Section 504. Read Title 34 for a full understanding of what this law covers. Also correct is that rights and responsibilities vary depending on grade level, and whether the school is public or private. We would like to clarify that the Americans with Disabilities Act, Section 504 and IDEA (Individuals with Disabilities Education Act) are separate laws. For a fuller explanation of what each law provides, visit dredf.org/advocacy/comparison.html.
Regarding the “mean” behavior Claire has experienced, the Department of Education (DOE) has outlined several strategies that schools can take to address such behavior, which should not be tolerated. Call the DOE’s Office for Civil Rights hotline at 1-800-421-3481 to connect with the regional office serving your state.
A new outlook
“The Courage To Create” (Winter 2013-14) lifted my spirits. My multiple sclerosis has made me philosophical about life. My main focus can be on what I have lost or what I have.
After my diagnosis in 1995 with secondary-progressive MS, I gradually lost one ability after another. I eventually enrolled in an art workshop and took up oil painting. I’ve gotten good at it and had my first show this year. I’ve sold several paintings. I’ve also become a good cook, as well as a better husband and father.
My message to other people living with MS, especially the newly diagnosed: What you once did is in the past; you can’t go there again. This isn’t the end but a new door that’s opened to you.
Joe Cardillo, Wall Township, New Jersey, via email
A shared sentiment
When I read my first issue of Momentum (Winter 2013-14), I felt compelled to respond to the story, “Emotional currents: The shifting tides of moods in MS.”
I was diagnosed with MS in November 2012 and, like William (Pulliam) in the story, my family has been my greatest support system. Since my diagnosis I have been on every turn, through every tunnel and felt every loop of the emotional roller coaster related to MS. Some days I feel perfectly content with my illness and the changes I have had to make in my life. Then other days, like today, I feel like my life has been changed forever; no one understands me, I can’t believe I am sick, and I will grow to be a sick lonely old lady with 100 cats—with the highlight of my life being my monthly infusion—YUCK! I know that this feeling will pass, but when it comes, it is here.
I just wanted to share how William’s inspirational story has blessed me, and how his warm smile brightened my day.