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Monday, January 23, 2017

Disability Activist Ed Roberts on "60 Minutes" with Harry Reasoner



This is a video that was shown on the CBS show "Sixty Minutes" about Ed Roberts. He was stricken with polio in 1953, right before the vaccine was discovered.  He got a degree, fell in love, got married and fathered a son -- all while being paralyzed from the neck down, and dependent upon a ventilator to breathe and to stay alive!!  Furthermore, he started a movement for PWDs to live in their communities and stay out of institutions.  And -- most amazingly -- he tried for years to end his life!! After the last of his failed suicide attempts, he decided to live and to live a purposeful life.  I for one, am most grateful he decided to stop trying to kill himself and make a difference; my life would be so totally different if Ed Roberts had been allowed to die.  I am determined to live a life of purpose and this story humbles me because I am so much more able-bodied than Ed Roberts and I have not done a fraction of what this man has done.  He has been disabled almost his whole life and I was able-bodied for a good part of my adult life.  It is worth 16 minutes of your 1440-minute day -- 1/90th of your day to watch this. This is truly a hero and an inspiration!!  Give me your comments and let me know if this video changes your thinking.  Thanks to NYC disability activist Lawrence Carter-Long for sharing this video.

Thursday, January 19, 2017

How You Can Join the Women's Inaugural Day March on Washington If You Can't Go to DC -- and EVEN IF You Can't Leave the House

Thousands of women [and men] will descend on Washington DC tomorrow to protest the disgusting treatment of women by President-elect Donald J Trump.  Furthermore, PWDs will also be assembling to protest the repeal of Obamacare -- aka Affordable Care Act -- which now affords millions of previously-uninsured Americans.  Repeal will jeopardize the health -- and lives -- of millions.  People with Disabiities and chronic diseases are especially vulnerable.

But not everyone can get to Washington DC on Inauguration Day [Friday, January 20, 2017]. There are an estimated 600+ local marches, especially in major cities.  Consider joining a local march near home...click on this link to find a local sister march near youBut what if you don't live close enough to a local event?  Many PWDs can't travel, are indeed even home-bound.  Many seniors and PWDs are confined to nursing homes or other institutions.  There are a number of reasons a person can't get outside to join in a march.  If you are in such a situation, there are many ways to show support.  For some excellent ideas, look at this great article on the Upworthy blog.

The article includes a picture that you can purchase a download of, which [the artist uses the proceeds as donation to Planned Parenthood or Running Start]  and make into a poster which you can put on stakes and display on your lawn, or paste on your door. By the way, the artist -- Narya Marcille -- gives permission to use the illustration as a Facebook profile pic.  Consider inviting friends over to watch coverage of the DC March on TV and doing any of the activities listed.  If you are living in a nursing home or other medical facility, try to organize a group effort.  Donate to a woman's charity, like Planned Parenthood or the League of Woman Voters. The article even gives offbeat suggestions like ordering a pizza from a DC pizzeria and having it sent to some marchers.  I especially like the recommendation to order a tee shirt with an inspirational quote like "Love Trumps Hate" or "Nasty Woman" and instagramming a pic of you wearing it.

Most of all, don't let anyone intimidate you, making you feel guilty for not going to DC and/or not marching.  Tell your able-bodied friends and relatives you can make an impact just as powerful, from your living room, in your wheelchair and even from your bed.  Nobody knows your challenges.  As for me, I still don't know if I will be able to assemble in Manhattan, but if not, I intend to do whatever I can to express my support.

Wednesday, January 18, 2017

"Sneaky Blends" by Missy Chase Lapine: Rethinking Nutrition, Smoothies and Juicing

This book is for everyone, but it's especially worthwhile for those battling with difficulty swallowing [dysphagia] due to a neuromuscular disease, cancer treatments or any other illness or disorder -- chronic or temporary -- that compromises swallowing.  But with the modern interest in smoothies and juicing for nutrition or just convenience, Lapine, who is also known as "The Sneaky Chef" builds on an already-popular history of books, numerous television appearances and blogging to transform the way America eats. Dedicated to children's health, Missy Lapine has already developed her company, Sneaky Chef Foods LLC, producing products that "sneak" nutrition into kid's meals.  Her 2007 book "The Sneaky Chef: Simple Strategies for Hiding Healthy Foods in Kids' Favorite Meals" appeared on the New York Times Best-Seller List.

Now, with her newest book, "Sneaky Blends" Ms Lapine expands into over 100 recipes that incorporate purees into familiar and favorite dishes.  In the book are ways to sneak blends into any meal -- omelets, soups, casseroles are just a few.  And the Sneaky Chef also demonstrates ways to include purees into favorite recipes to make them more healthy; using them to replace the fat and sugar in baked goods or to cut the mayo in tuna salad are only two examples. There are recipes for 15 base blends in the book, such as butternut squash-apple and black bean-blueberry-baby kale.  The reader can transform a recipe into a healthy dish by mixing in a puree as Missy shows in her book. There are 75 dishes in the book, each using a base blend.  In addition, Missy reveals her custom "Blends Cleanse®" -- a three-day body reboot.  She also offers priceless tips and tricks for blending and the book is filled with beautiful color photographs.

You can check out this book (and purchase it) by clicking on the link on the right sidebar.  I was personally impressed when I learned that Missy Lapine is a regular contributor to the Huffington Post and is a member of Children's Advisory Council for New York Presbyterian Morgan Stanley Children's Hospital, which uses some of her Sneaky Chef meals are served to patients.  You can also visit Missy's website.  Missy's strategies are perfect for anyone, but especially for people with illness that necessitate a nutrient-dense diet.  I am extremely impressed by this book and by Missy's website. 

Friday, January 13, 2017

NYPD Det. Steven McDonald: In Memorium





Photo of the front of St. Patrick's Cathedral, NYC courtesy of Wikimedia/Rotatebot

St Patrick's Cathedral in New York City will be the site of the funeral of a truly remarkable paralyzed man -- NYPD Detective Steven McDonald.  If ever a man was entitled to be angry and bitter, it was McDonald, his wife Patti and their son Conor.  If ever there was a PWD [person with a disability] worthy of being called an inspiration, it was Steven McDonald. Thirty years after being shot down and paralyzed in the line of duty. McDonald died of a heart attack earlier this week.

Steven McDonald left his home in Malverne, Long Island on July 12, 1986 and said goodbye to his wife Patti.  They were married less than a year, and Patti was pregnant with their first [and only] child.  Although every cop's spouse knows there is a possibility the officer might return home injured or not at all, I'm sure Steven and Patti expected to settle in their home in Malverne with the stereotypical large Irish-Catholic family.

That morning, Steven McDonald questioned a 15-year-old in Central Park about a string of bicycle thefts and noticed something in the teenager's hand, wrapped in a sock.  In an instant, a gun emerged from the sock and the teenager put three bullets in the cop's body -- one in his head, one in his throat, and one in his spine.  Those three bullets rendered Steven McDonald a quadriplegic that day and ventilalator-dependent. 

Steven McDonald, Patti McDonald, and their soon-to-be-born Conor McDonald had every reason to live a life filled with anger and hate.  Three bullets from a 15-year-old made Patti into a full-time caregiver, Conor into a child whose bond with his father would be different from almost every other kid his age.  And three bullets made Steven a quadriplegic [paralyzed from the neck down] who would never be able to play ball with his son, teach him how to drive, or anything else that dads typically do with their sons.

But, rather than live a life of anger, revenge or bitterness, Steven McDonald forgave the kid who changed his life.  He turned tragedy into triumph, by traveling the city, country and even the world to teach everyone how to live with forgiveness and peace.  He would dream of one day traveling with the teenager who shot him, to spread the message McDonald had already conveyed at the Vatican, and in Israel, South Africa and Northern Ireland.  Sadly, this would never happen; shortly after being released from his ten-year prison sentence [for attempted murder of McDonald], the teenager -- then a 25-year-old-man after release] died in a motorcycle accident.

Just as Steven McDonald followed tradition and joined the NYPD after his father and grandfather,  Conor has also become an officer with the NYPD, making four generations of McDonalds in blue.  In his speech at his father's funeral at St. Patrick's Cathedral today, Conor didn't dwell on what he missed by having a wheelchair-bound and paralyzed dad ho depended on a ventilator to breathe for him.  Conor reflected on the good times with a remarkable dad who shared their appreciation courtside at hockey games rooting for the New York Rangers.  When people call me "brave" for dealing with my disease, I tell them that bravery is going into a dangerous situation and not knowing whether you're coming out alive. Steven McDonald was brave.  And he probably flinched at being called an inspiration, but he inspired so many, including me.





Tuesday, January 10, 2017

Is Calling a Person With a Disability "Inspirational", "Brave" or even "Strong" a Compliment?

Erin Tatum said it better than I ever could, in her essay for the Everyday Feminism site.    Please don't let the title of the site sway you.  No matter your gender or sexual orientation, this is an excellent article written by someone who has been disabled longer than I have -- since childhood or maybe even since birth.  So Ms. Tatum has a different perspective than I have but that doesn't make her adult experience any different from mine. In fact, the article was forwarded to me by my friend Anthony, who is male.

How do I feel?  Well, I have only been hearing these things for 13 years and not a lifetime.  It really depends on who says it, and the circumstances.  It means more to me when it is uttered by someone who knows me well -- sometimes.  There is a woman in my building who is very religious.  Every time she passes me outside, she calls me her "little angel", places her hand on my head and asks Jesus to heal me.  Believe me, there are other neighbors who need that just as much or more than I do; several years ago, we had a heroin addict who was found dead on his toilet five days after he died.  There is another neighbor who succumbs to schizophrenia about once a year and has to be hospitalized.  I don't see my pious neighbor placing her hands on my mentally-ill neighbor's head.

I have been told more than once after expressing my sympathy for a friend's misfortune, "oh never mind me; your problems are much bigger".  What an insult!  What that does is to disallow me from the privilege of being a sympathetic ear and a true friend -- i.e. an equal partner in a relationship.  An even bigger insult is the admission of a friend that she didn't want to tell me about her vacation because she didn't want me to "feel bad".  And more than once, I have heard that other people didn't want to "hurt" me by telling me about anything good happening in their lives.  To assume that I can't be happy for someone because I am disabled, is the ultimate insult.  And, to treat my recent re-connection with an old flame as the elephant-in-the-room, or to tell me that "nobody wants to see you hurt"?  What makes them think I am emotionally fragile because of my disability?  Actually, it's quite the contrary -- I've had to put up with more rejection and abandonment in the last 13 years than all the 47 previous years as an able-bodied person.  I am stronger than I've ever been.

Lastly, my posting of an article on Facebook recently, about a woman in California who was diagnosed with my disease and chose doctor-assisted suicide -- really opened my eyes.  My "friends" called her "brave".  All of a sudden, my choice to live wasn't the brave choice at all.  A real-life friend even told me that my choice wouldn't be her "cup of tea" and that she would have chosen death, like the woman in the article.  The fact that so many people would rather be dead than be me, really blew me away and made clearer their interpretations of "inspirational"

I'm sure some people will see this blog post as ungrateful.  They are paying me what they consider to be compliments.  Please follow the link above and read what Erin Tatum says.  Compliment my hair, my new sweater, or my writing or artwork. You can tell me I'm an inspiration because I managed to lose 22 pounds despite being a wheelchair user and have limited exercise options and hypothyroidism [slow thyroid] -- I'm proud of that.  But don't tell me I'm an inspiration because I choose to get out of bed every morning and do what I have always loved -- help people through my writing, and try to be a true friend and giving person.  Don't assume I am so wrapped up in my own misfortune that I can't listen to that of anybody else.  Most of all, don't presume that I begrudge the fortunes of other people, or -- worse yet -- that I can't hope for love, desire closeness from the opposite sex, or that my heart is any more breakable than it was when I was walking, and that somehow the wheelchair means my ego has become an easily-shattered piece of glass.

Wednesday, January 4, 2017

After the Deaths of Debbie Reynolds and Carrie Fisher : Women and Heart Disease

The shocking death of Carrie Fisher before the New Year, and the death of her mom, Debbie Reynolds, the day after, brings to the forefront the issue of women and heart disease.  Did you know that heart disease kills more American women annually than breast cancer and lung cancer combined?  And did you also know that heart disease kills six times as many women as breast cancer?  And yet, why doesn't heart disease get as much coverage in the media as female cancers?

In her new book Women and Heart Disease: The Real Story, accomplished cardiologist Dr Jacqueline Eubany explores the reasons for the disparity of awareness between heart disease in men and heart disease in women.  Heart disease has always been regarded as a male affliction. So often,  women die from heart disease because they are misdiagnosed or diagnosed so late that the heart is damaged beyond successful repair.

I myself was diagnosed with hypertension [high blood pressure] several years ago.  I must say that the diagnosis blindsided me; having lost my mother to breast cancer in 1995, my focus was always on annual mammography.  You see, it was my dad with the heart disease in my family; I figured that was a "man's disease".  But, thinking back to 1970, I remembered that my paternal grandmother died suddenly of a heart attack, despite the fact that it was always my paternal grandfather who had heart problems.  It seems that my grandfather was constantly monitored throughout his adult life, but when my grandmother had complained to her doctor of heart-related symptoms, she was ignored until it was too late.  My grandfather with decades of heart problems, survived grandma by a year, almost to the day.  Broken heart syndrome? Perhaps.  25 years later, a year after my mom died, my dad had his first heart attack at age 68.  Two-and-a-half decades after my grandfather's era, my dad had a stent put in; a few years later, they installed an internal pacemaker-defibrillator combo.

Why are women misdiagnosed, or diagnosed too late.  Sometimes, we women ourselves are to blame; ever the caregivers, we ourselves ignore minor symptoms of heart disease.  We are too busy taking care of others and can't take the time to check out what often seems to be digestive problems.  Symptoms of heart disease differ between men and women.  Dr. Eubany talks about the difference in symptoms, and the difference in how the medical profession has treated the sexes.  It's shocking how little the average American woman knows about heart disease and its symptoms. But ask about breast cancer, and most women can speak about  mammograms, breast self-exams, chemo and mastectomies.

Dr. Eubany provides specific advice  on the "silent" symptoms of heart disease; she offers expert tips on what women can do to keep their hearts healthy and reduce their risk of  becoming a statistic of the number one killer of women  in the U.S. This book is as enjoyable to read as it is informative and enlightening.  Dr. Eubany uses anecdotal evidence from real patients and jargon-free language.  Dr. Jacqueline Eubany is a board-certified cardiologist and electrophysiologist practicing in Orange County, California.  She attended the Boston University School of Medicine.  Additionally, she is a fellow in the prestigious American College of Cardiology and a member of the Heart Rhythm Society.

To purchase a copy of Women and Heart Disease: The Real Story from Amazon, just click
 the book's link toward the top of this page.