#7D4H - Guest Blogger Margaret Ferrarone #Disability

7 DRESSES 4 HEALTH: Day 196 - Day 202 ~ July 15th - 21st ~ 

Guest Blogger Bio: Margaret Ferrarone has been an advocate for over 20 years for her two daughters, Sara"  and Laura. Both were diagnosed at an early age with a neuromuscular disease, Friedreich's ataxia. Margaret and her husband, Bob have raised hundreds of thousands of dollars for research and continue to spread awareness and support for those who suffer with this debilitating, degenerative disease. 

Title: You Can't Judge a Book 

As self-appointed judges of the human condition, and I include myself in this lot, we tend to see those with physically “different” abilities (diffabilities, which is a new word I would like to coin) and acknowledge that these are the true heroes of suffering. Their ailments are worn on their sleeves and obvious to all. That is all true, however there are so many of our friends, neighbors and family who cope daily with the unseen.

More than 20 years ago, a close family member, a young, healthy mom of two began showing signs of severe fatigue. Eventually she was diagnosed with Chronic Fatigue Syndrome, an autoimmune disorder which was really new to most people in that day. Years of her young married life were greatly impacted by the debilitating nature of this disease. But, to look at her, she was beautiful and “normal”. No one understood how her day was lived and the despair of not understanding how long this would last or if it would ever end.

For many years I was blessed by a treasured friendship. This dear friend suffered with a very rare condition which caused her nerves to burn day and night. She had swollen clots of blood on her legs and ankles. Her skin peeled away to expose raw flesh on her hands, fingers and feet. She slept in a bathtub each night to keep her torso warm while her extremities were exposed to fans to abate the burning fire raging in her legs, arms and head. She could tolerate little to no food. She endured daily and nightly for ten years as the condition worsened beyond any thinkable reason. With her deep faith and trust, she carried her friendships from the “comfort” of her sofa with little complaint, but evident suffering. In February 2015, the raging war ended. She is now with the Jesus she loved.

I have been similarly blessed by a daughter-in-law who has been learning to cope with debilitating autoimmune conditions from a very young age. She is a beautiful, sincere, keenly smart and very committed woman. She loves simply because it is in her fiber. Her insight into the needs and suffering of others and her compassion for two and four-legged creatures knows no bounds. Outwardly she looks stunning, long dark hair and engaging smile. Inwardly her pain thwarts her every move. She has a Masters in Social Work from Columbia University, yet she hasn’t the stamina to put that passion to work. Does she feel lonely at age 29 while all around her friends are working toward that next promotion, physically achieving new heights and goals, starting families? How would you answer?

Last week I had coffee with a dear friend. In the 25 years that I have known her, she has been a force of nature. She worked hard and she played hard. She has always been athletic, playing tennis, skiing, biking, horseback riding and anything that took her out into nature. Now, she is struggling. In recent years a rare autoimmune condition has taken her by storm. It isn’t visible, but it is raging itself inside her body; taking command; taking away what she loves. I asked her if she was lonely and her tearful reply was a nod of her head, eyes drawn down.

I am a mom of two beautiful girls (and a really handsome son!). When my girls were very young we noticed gait issues; stumbling, falling, grasping for anything to hold onto. After lengthy testing for my older daughter we were given the diagnosis of Friedreich’s ataxia. All the information that followed was devastating. What was obvious to anyone was that they had a physical problem; they used orthotics on their legs, walkers in school, and eventually wheelchairs. No one had to guess whether they were dealing with a disease of some sort. Were we lonely with this diagnosis? Of course we were. My older daughter lost her battle three years ago. She was ready; she was tired.

Sadly, this is just a sampling of the people I have known and loved who suffered in relative isolation with mostly unseen conditions. Since I stopped working in 2009, I have become more keenly aware of those who struggle with chronic pain. The pain comes in many forms, from chronic migraine headaches to severe joint, stomach, or nerve pain. Some have all of these together. The labels given to these conditions range from Rheumatoid Arthritis, Fibromyalgia, Spondylitis, Myotonia, Erythromelalgia, and Ulcerative Colitis to a wide range of educated guesses. These people still rise each day to try to make the best of a bad situation. What they don’t need is our collective “wisdom” about how they can improve their condition. Be a friend. You don’t need to ask them how they’re feeling every day but, just be aware of their limits. Show compassion and don’t over share your minor complaints. If you only need Advil to chase away that ache or “hitch in your giddy up” because you just ran 10 miles, well probably it doesn’t need to be said.

To drive it home, I can’t end without my favorite verse from the Bible. 1 Corinthians 13:13 “And now these three remain; faith, hope, and love. But the greatest of these is love.” If today you are healthy and pain free, count your blessings. Show love to those who aren’t as lucky as you, turn down the volume on your criticisms, maybe make a meal or send a thoughtful note of encouragement. I just happen to know a few folks who would be forever grateful!

Call to action: Do you have important information around one of our seven causes: HIV/AIDS, Mental Health, Nutrition, Heart Disease, Maternal Child Health, Cancer, Disability, that you want to share with a wider audience? Do you or a loved one currently live and/or struggle with one of these causes? Do you work in research, advocacy, prevention, treatment or care? We want to hear from YOU! Write to us today: 7dresses@artsconnectinternational.org to become a featured blog writer. Another way to get involved is to wear the color of the day in solidarity. Take a picture of yourself in the color of the day and Tweet it @ArtsConnectInt, tag us on Instagram @ArtsConnectInt, or send it to us on Facebook.   

About 7 Dresses 4 Health (7D4H): 7D4H is a year-long arts and health education campaign lead by visual artist, Marian Brown, in conjunction with Arts Connect International. The objective of the campaign is to promote inclusive community practices through adDRESSing health artistically and collaboratively. To learn more about the genesis of the project, read Marian’s New Year Blog

About this week's look & location: All of the dresses for 7 Dresses 4 Health were designed and sewn by Kim's Fashion Design. Love the look? Visit Kim at 100 Huntington Ave, Boston MA 02116, call her at (617) 267-9299 or email her: info@kimsfashion.com. Mention 7 Dresses 4 Health for a special discount! 

Campaign Update (2017): All 7 Dresses 4 Health blogs were migrated from a former site, so the sharing analytics are inconsistent from when they were first published. We apologize to our guest bloggers, and readers, for this inconvenience. That said, the campaign garnered an average of 5K hits per blog, over 500,000 readers throughout 2015! Additionally, the average number of shares per guest blog was over 150x on social media (through Facebook and Twitter). Thank you for making this incredible campaign possible - and for all that it was for so many. With gratitude, Marian & the ACI Team