Becoming Visible — Invisible Disabilities Association

A Tick Bite Changed My Life Forever

April 4, 2013 by SherriConnell Leave a Comment

HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.

The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.

Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.

The Huffington Post wrote:

Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.

“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”

“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.

The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!

Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!

RESOURCES

Invisible Disabilities Association

HuffPost LIVE

The Huffington Post

Not Handicapped Enough

About Sherri Connell

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, disability, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, lyme disease, multiple sclerosis, news, non-profit, outreach, pain, personal story, spreading the word, support, television, traumatic brain injury, video

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7 Realities of the Invisible Becoming Visible with Wayne Connell: IDA Video Seminar

January 7, 2013 by Wayne Connell Leave a Comment

Invisible Disabilities Association Founder and President, Wayne Connell shares 7 points about invisible disabilities and how to be a source of support to those who live with them.

This video is an excerpt from his seminar of the same name that he has given to various groups and organizations.

Wayne’s wife, Sherri lives with debilitating Progressive Multiple Sclerosis, Chronic Late Lyme Disease and Chemical Injury.

7 Realities of the Invisible Becoming V-I-S-I-B-L-E

V = Vast
I = Invisible
S = Society
I = Individual
B = Believe
L = Love
E = Everyone

Wayne Connell, Founder and President
Invisible Disabilities Association
http://www.InvisibleDisabilities.org

ADDITIONAL RESOURCES

http://www.InvisibleDisabilitiesCommunity.org
http://www.Facebook.com/InvisibleDisabilities
http://www.InvisibleNoMore.TV
http://www.Facebook.com/InvisibleNoMoreTV
http://www.YouTube.com/InvisibleDisability
http://www.Twitter.com/INVDisabilities
http://www.InvisibleHero.org
http://www.CleanerIndoorAir.org

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Filed Under: Becoming Visible, Invisible No More Tagged With: advocate, author, awareness, caregiver, disability, doctors and nurses, helpful tips, illness, injury, invisible disabilities, Invisible No More!, loved ones, outreach, pain, personal story, seminar, speaker, spreading the word, support, video

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Looks Can Be Deceiving

January 6, 2013 by KatheSkinner 2 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and IDA Executive Board Member, Kathe Skinner, LMFT

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me. When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS, so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

This article was first published on Disability.Blog by Disability.gov. July 25, 2012.

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

What’s So Funny About …

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, awareness, caregiver, disability, doctors and nurses, helpful tips, illness, injury, invisible disabilities, Invisible No More!, loved ones, multiple sclerosis, pain, personal story, spreading the word, support

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Join the Expedition

November 26, 2012 by Wayne Connell 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world!

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14^th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5^th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.

2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.

2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.

2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.

2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.

2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.

2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.

2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.

2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.

2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.

2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.

2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

In addition, check out our great expert chats on the first ever Online True Help® Disability Web Expo sponsored by Allsup, which will be held on September 27^th. Register today for this free event. Topics include:

“Be Expedition Ready – Learn about preparing for the journey of care giving” by Antarctic Mike
“Ready, Set, Thrive – Nine new rules for engaging change and managing stress” by Jeff Vankooten
“7 Realities of the Invisible Becoming Visible” by Wayne Connell, IDA Founder and President
“Communication Do’s and Don’ts for People with Disabilities” by Kathe Skinner, MA, LMFT
“Humor for Health & Well-Being” by Karyn Buxman, RN, MSN, CSP, CPAE
“Your Changing Brain – The owner’s manual to your mind” by Rick Watson

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Wayne

Filed Under: Becoming Visible, Celebrities, Invisible No More, Personal Stories Tagged With: advocate, awards, awareness, banquet, caregiver, celebrity, disability, doctors and nurses, event, fundraiser, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, news, non-profit, outreach, pain, personal story, speaker, spreading the word, support

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Learning the Language of Invisible Disabilities

September 18, 2012 by AntarcticMike 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and Antarctic Mike Pierce, IDA Ambassador.

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story.

“Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks healthy, you’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

This article was first published on Disability.Blog by Disability.gov. March 14, 2012.

MEET ANTARCTIC MIKE AND ANGELA! Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

MORE INFORMATION:

2012 IDA Honor Awards Banquet with Keynote Speakers, Antarctic Mike and Angela Pierce

Antarctic Mike’s Website

Antarctic Mike, IDA Ambassador

Angela Pierce’s Blogs on IDA

Angela Pierce’s Website – Falling Off the Mountain

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

But You LOOK Good! on Disability.gov

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Mike Pierce

Antarctic Mike (Mike Pierce) is a professional speaker, managing partner in a recruiting company, an avid adventure athlete, and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, but you look good, caregiver, disability, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, kidney disease, language of inviisble disabilities, loved ones, marriage, pain, personal story, ptsd, speaker, spreading the word, support, traumatic brain injury

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Invisible No More

July 6, 2012 by Wayne Connell 6 Comments

Invisible No More!

Shining a Light on the Incredible Perseverance and Courage of Those
Living with Illness and Pain.

It all came crashing down in 1991. First, her legs became paralyzed and then, she received a diagnosis of primary progressive multiple sclerosis (MS), followed by a 10 day hospital stay. She slowly regained the use of her legs, yet the bone-crushing pain, fatigue and cognitive impairments did not dissipate.

We met in 1992. Sherri was a customer of mine at an electronics store I was managing. Wow, was I smitten. We met again at a singles group at her church; all of the guys were surrounding her. Did I even have a chance? Afterwards, everyone went out together to a local restaurant. I, of course, sat across from her. All of the other guys who had been interested in her disappeared when they heard the words, “MS” and “Disabled.” Sherri figured she would tell me the truth right away, and maybe save her the pain of another relationship lost.

I was not deterred. I was falling head over heels in love. She had been a model, a beauty queen, an actress, a singer with the voice of an angel, a cheerleader and someone everyone liked and looked up to. To me, she was still all of these and more. She was funny and intelligent, earning three college degrees, drop dead gorgeous and caring and loving of others.

Shortly after we started dating in 1992, Sherri was also diagnosed with Late Stage Chronic Lyme Disease, which was traced back to when she was bitten by a tick while visiting Arkansas at the age of 14. She had been sick on and off since then, but no one knew why. She was still active, passionate and hard working until her body finally gave out when she was 27 years old in 1991.

We were married on September 4, 1994. We were in love. She started writing about her journey in pamphlets. She wrote about MS to help explain to family and friends about her illness. She wrote about how people didn’t understand why someone who appeared normal was allowed to park in disabled parking. She wrote about how appearances do not always tell the story on the inside. In 1996, she finally thought of a label that described her condition – she had an, “Invisible Disability.” I thought, “Wow! Your description really makes since!” Soon thereafter, I took some of her writings and posted them on a website, called The Invisible Disabilities Advocate.

Therefore, in 1997, the Invisible Disabilities Association (which was originally called The Invisible Disabilities Advocate) was launched. I had no idea that hundreds of thousands of people from around the world were dealing with their illnesses and pain, and how people did not understand and in many circumstances, believe that they had a disability because of the invisible nature of their symptoms.

Along with my wife, I wrote the booklet, “But You LOOK Good – How to Encourage and Understand People Living with Illness and Pain.” IDA has sent more than 21,000 copies worldwide. Our organization continues to grow and support people from around the world with a message of understanding and encouragement; and IDA comforts those living with illness and pain by letting them know that they are not alone. IDA is also educating families, friends, co-workers and caregivers that even though a person’s symptoms may not be visible, they are very real.

IDA reaches around the globe with stories of suffering and triumph. We created www.InvisibleDisabilitiesCommunity.org as a supportive place to share the difficulties and to encourage people touched by illness, pain and disability. Our organization recently launched our second YouTube channel, www.InvisibleNoMore.TV, which brings to life the journeys of many living with invisible disabilities.

We also recently held IDA’s fourth annual Honor Awards Banquet in Denver, and you can see the stories of the very special guest speakers on our IDA YouTube Channel.

Learn about Matt Barrett’s amazing story of lifelong battles with 11 types of cancer with more than 1,700 surgeries, as well as his struggles with homelessness throughout much of his adult life.
Listen to Lori Frisher, a cancer survivor who was once hearing impaired and through cutting-edge technology, is becoming INVISIBLE NO MORE(SM) as she hears the sounds we take for granted.
Be moved by the story of former Captain Luis Carlos Montalván and his service dog, Tuesday and their journey together with Post-Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI).
Be inspired by former World Series Champion Ed Hearn as he shares about his life after three kidney transplants and skin cancer.
Read about Angela Pierce who survived a 130 foot free fall in a climbing accident, as she shares about living with a Mountain of pain.

These stories and many more are chronicled, as well, on www.InvisibleDisabilities.org

“Believing a loved one when they say they are sick or in pain is the most important thing we can do. Just because we can’t see from the outside, what they are battling on the inside doesn’t mean it doesn’t exist. Belief, validation and support can give a friend or family member the strength they need to continue the fight!”

Take the time in this New Year to encourage and believe a loved one living with illness and pain. Do not allow them to live in isolation anymore. As a society, we need to love first. Join IDA in envisioning a world where people living with illness, pain and disability will be INVISIBLE NO MORE(SM).

This article was first published on Disability.Blog by Disability.gov. January 4, 2012.

JOIN US IN DENVER ON OCTOBER 14, 2012. IDA wants you to “Join the Expedition.” Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

ABOUT THE INVISIBLE DISABILITIES ASSOCIATION

The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more. Visit us at: www.InvisibleDisabilities.org

RELATED ARTICLES:

About IDA

Woman’s Disability Inspires Husband to Reach Out to Others

2011 IDA Brings Awareness and Support Around the World

2010 About the Invisible Disabilities Association – IDA Founder and President, Wayne Connell

IDA’s Invisible No More on Disability.gov

IDA’s It’s All in Your Head on Disability.gov

IDA’s But You LOOK Good on Disability.gov

About Wayne

Filed Under: Becoming Visible, Invisible No More Tagged With: advocate, awareness, disability, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, non-profit, outreach, pain, personal story, spreading the word, support

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Celebrity Apprentice: Clay Aiken is Runner Up

March 30, 2012 by admin 7 Comments

Clay Aiken Screenshot from NBC Celebrity Apprentice Video

Clay Aiken was not chosen by Donald Trump to be this season’s Celebrity Apprentice.

May 20, 2012. Clay Aiken and Arsenio Hall, along with their teams, were asked to create a celebrity variety show and a 30-second public service announcement (PSA). Clay and his team took on a carnival theme for their room and their show consisted of singing from Clay, Aubrey O’Day, Debbie Gibson and Dee Snider. Penn Jillette also did a magic act, alongside of his guest, Teller. The PSA was a very impacting spot about his charity, the National Inclusion Project (NIP). Clay and his team raised and impressive $301,000 for the NIP.

Although Arsenio and his team raised less than Clay’s ($167,000), Donald Trump chose Arsenio to be the Celebrity Apprentice. Earlier in the season, Arsenio raised $105,000 versus $60,000 for Clay.

Arsenio’s charity, the Magic Johnson F oundation not only received what he raised during his task, but also the $250,000 prize for winning. Congratulations Arsenio and MJF!

Clay’s PSA for the National Inclusion Project.

UPDATE 5/13/12 – Clay Aiken makes it into the Finals of Celebrity Apprentice. Aubrey O’Day is fired, leaving Clay Aiken and Arsenio Hall to battle it out in the finals. Clay and Arsenio are giving their tasks to raise money for their charities by planning, producing and starring in a fundraising event. They were given the opportunity to choose from a group of former Celebrity Apprentice contestants.

Clay’s Team: Aubrey O’Day, Debbie Gibson, Dee Snider and Penn Jillette.

Arsenio’s Team: Adam Carolla, Lisa Lampanelli, Paul Teutul, Sr. and Teresa Giudice.

UPDATE 5/6/12 – Clay Aiken makes it into the Final Three of Celebrity Apprentice. Clay and project manager, Lisa Lampanelli won the last task. On the other team, with Arsenio Hall and Aubrey O’Day, Teresa Giudice was their project manager and was sent home. The four remaining contestants were immediately sent into one on one interviews with former Celebrity Apprentice contestants Country Singer John Rich (Season 4 Winner) and Actress Marlee Matlin (Season 4 Runner Up). When the final four returned to the boardroom, Lisa Lampanelli was fired.

Clay Aiken Screenshot Celebrity Apprentice Video

Clay Aiken on the Celebrity Apprentice for Kids with Disabilities

March 30, 2012. Clay Aiken, first runner up on ‘American Idol’ Season 2 in 2003 is now a contestant on ‘Celebrity Apprentice,’ Season 5. He is there to raise money for his charity, the National Inclusion Project.

Clay shared:

The National Inclusion Project is an organization that I helped start about eight years ago. I used to see kids with disabilities get kicked out of programs or not be allowed to go to a summer camp that I was working at because they had Autism or a little boy or girl had Cerebral Palsy and they didn’t have the ability to work with them at the summer camp. In our social settings. We do segregate. We don’t include individuals with disabilities in workplaces oftentimes and almost always, unfortunately, in extra-curricular programs. So we work with university to help create a curriculum that teaches people how to include kids with disabilities and without disabilities in service learning projects. So, inclusive groups of kids, teenagers, will work together to do stuff in their community. We are sort of a service organization that serves other non-profits in a way (Video: Clay Aiken’s Charity).

For his first task as Project Manager ,the show that aired on March 25th, the teams were asked to throw a party for Crystal Light’s new “mocktail” beverages. For the men’s team, Unanimous, Clay volunteered to be Project Manager. For the women’s team, Forte, Aubrey O’Day was the Project Manager.

Clay and his team chose to highlight the Peach Bellini flavor and use the tagline, “Life’s a Peach.” Their party had a beach-theme, complete with sand, island music and tikki-bars. Special guests, Kathie Lee Gifford and Hoda Kotb showed up to the party and when the Crystal Light Executives arrived, Clay sang, “Under the Boardwalk.”

Although the contest seemed to be close, Team Unanimous was chosen as the winners. As their reward, Clay’s charity was to be given $20,000 from the show. As an added bonus, Crystal Light also contributed $30,000, making Clay’s contribution to his charity, $50,000.

Other celebrities who have participated in Season 5: Adam Carolla, Arsenio Hall, Aubrey O’Day, Cheryl Tiegs, Clay Aiken, Dayana Mendoza, Debbie Gibson, Dee Snider, George Takei, Lisa Lampanelli, Lou Ferrigno, Michael Andretti, Patricia Velasquez, Paul Teutul, Sr., Penn Jillette, Teresa Giudice, Tia Carrere, Victoria Gotti.

Clay Aiken’s Charity

Life’s a Peach

ARTICLE RESOURCES

National Inclusion Project

Video: Life’s a Peach. Celebrity Apprentice. Season 5. 2012.

Video: Clay Aiken’s Charity. Celebrity Apprentice. Season 5. 2012.

RELATED STORIES ON IDA

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

Actress Candice Accola Gives Voice to Lyme Disease

Country Music Star, Clay Walker Diagnosed with MS

Former Professional Baseball Player, Ed Hearn, Battles Kidney Disease

George Clooney Battles Pain, Insomnia and Bouts of Loneliness

Hit Country Singer, Trace Adkins, Brings Awareness to Food Allergies

IDA Keynote Speaker, Luis Carlos Montalván on David Letterman

Kathy Buckley, Comedian, Actress, Motivational Speaker

Rocker Bret Michaels Lives with Type 1 Diabetes

Teresa Giudice Wins 60K in Honor of Child with Kidney Disease

Tim Tebow Makes a Difference for Youth Living with Illness and Injury

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Filed Under: Becoming Visible, Celebrities, Invisible No More Tagged With: advocate, autism, awareness, celebrity, celebrity apprentice, cerebral palsy, Clay Aiken, disability, Invisible No More!, National Inclusion Project, news, non-profit, outreach, personal story, singer, spreading the word, video

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Why Is the King of Romance Boycotting Valentine’s Day 2012?

January 14, 2012 by admin Leave a Comment

Why is Greg Godek, Author of the Bestselling book, 1001 Ways to Be Romantic Boycotting Valentine’s Day 2012? And what could this possibly have to do with the Invisible Disabilities Association?

You may remember Greg when he was on Oprah, Phil Donahue and talked about on Jay Leno! He has been busy with many new books and projects, including speaking for groups and businesses!

This year, he is Boycotting Valentines Day! Why you ask? Well, check out some of his Tweets! Keep reading and you will see what this has to do with IDA!

Greg with Wife, Karyn

The author of “1001 Ways to be Romantic” supports “Boycott Valentine’s Day 2012” to help put the focus on spreading your love wider!
Love & romance shouldn’t be focused on Valentine’s Day. They’re about EVERY day of the year. Don’t limit your love to ONE day!
A great way to celebrate “Boycott Valentine’s Day 2012”: Spend half of your budget on your lover, and donate half to a charity.
“Boycott V-Day 2012” gives you a way to spread your love by donating to a deserving charity: Invisible Disabilities Association!
Invisible Disabilities helps people with non-visible conditions: Chemical sensitivities, chronic pain, cancer, etc.
Instead of 12 roses for V-Day, give just ONE (with a great note attached) & donate the rest of your budget to the Invisible Disabilities Association!
I’ll bet you know someone who lives with an invisible disability. Help them by donating half your V-Day budget.
Okay, okay. You want ROMANCE? Hop on over to 1001WaysToBeRomantic.com; there’s more tips than you could accomplish in 3 years
Let’s get back to saving the world. Do something special for your lover, then see Invisible Disabilities & donate!

Read all of Greg’s Tweets on his Twitter account! Follow IDA on Twitter! Donate to the Invisible Disabilities Association! Just $5 or more can make a big difference!

Thank you, Greg, for your compassion and support to people living with illness, pain and disability!

Greg on Oprah, Donahue and talked about on Jay Leno

ARTICLE RESOURCES

1001 Ways to Be Romantic with Bestselling Author, Greg Godek

Greg Godek on Twitter

IDA on Twitter

Donate to the Invisible Disabilities Association

About

Filed Under: Becoming Visible, Celebrities, Invisible No More Tagged With: 1001 Ways to Be Romantic, author, awareness, event, fundraiser, Greg Godek, humor, invisible disabilities, news, speaker, spreading the word, support, video

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Invisible No More: 2011 IDA Awards Night

January 11, 2012 by admin 1 Comment

Learn more about the Invisible Disabilities Association and our new campaign, Invisible No More!

Hear from the Invisible Disabilities Association’s Founder and President, Wayne Connell and his passion to bring to light the challenges of living with debilitating conditions as well as the incredible courage and perseverance these people have.

Listen to Karyn Buxman, RN, MSN tell her whimsical, invisible story that paints a picture of how things are not always what they may seem. Karyn Buxman is a Nurse, Hall of Fame Speaker, Author and Humorist

Meet Special Guests Lori Frisher and Matt Barrett!

Lori is an Honor Student, two time cancer survivor and Emmy Nominee. She was also the first candidate in the world to receive the Esteem Implant, along with the Cochlear Implant she already had. Lori shares her journey of life with moderate to severe hearing impairment with her message, “Imagine.”

Matt has lived a life of amazing perseverance and courage. Since the age of 2, Matt has battled 11 types of cancer and has had over 1,700 surgeries. He has also been homeless on and off for much of his adult life. In addition to horrendous pain and fatigue, Matt has endured incredible discrimination. Because of the extensive surgeries and scaring on his face, Matt often gets stares, dirty looks and even called horrible names. Despite all of this, Matt’s friends will tell you he is one of the kindest people you will ever know.

Also in this video: Master of Ceremonies, DJ Rick Crandall of KEZW Radio

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe.

Invisible Disabilities Association: http://www.InvisibleDisabilities.org

RELATED ARTICLES:

2011 IDA Award Recipients

A Lifelong Journey with Special Guest, Matt Barrett

Finding Humor in Difficult Times with Karyn Buxman, RN, MSN

IDA Honor Award Banquets

Imagine with IDA Special Guest, Lori Frisher

About

Filed Under: Becoming Visible, Invisible No More Tagged With: advocate, awards, awareness, banquet, caregiver, disability, doctors and nurses, event, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, outreach, pain, speaker, spreading the word, support, video

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Invisible No More: Andrea Fabry

December 5, 2011 by admin 5 Comments

Through the project, Invisible No More! the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Andrea Fabry and her family who experienced severe mold toxicity from their home. Andrea now strives to help others facing the same issues as well as those who are healthy, by sharing their journey and what they have learned. She is the author of two websites: Our Health Journey and momsAWARE.

ADDITIONAL ARTICLES

Toxic Mold Uproots Family’s Health and Home

Cleaner Indoor Air Campaign

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, disability, environmental illness, helpful tips, illness, injury, invisible disabilities, Invisible No More!, mold injury, multiple chemical sensitivities, personal story, video

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Invisible No More: Jodie Akers

November 21, 2011 by admin 1 Comment

This video features the story of Jodie Akers, a young lady in the United Kingdom who lives with POTS (Postural Orthostatic Tachycardia Syndrome). In the midst of her challenges, Jodie loves to encourage and educate others through her YouTube Channel and her website, POTS Awareness.

UPDATE: Jodie’s story was published in the Derby Telegraph on November 28, 2011. Jodie wants to make people aware of her life-altering and rare illness.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, illness, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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Invisible No More: Milly

November 10, 2011 by admin Leave a Comment

This video features the story of Milly, a young lady who lives with Dysautonomia/POTS, HMS and Dysmotility. She is the author of the unpublished book, Trading Sorrows and is working on one called, New Mercies. Despite the daily challenges Milly faces, she strives to encourage and educate others through her YouTube Channel, Flyinhyy.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, doctors and nurses, Dysautonomia, illness, inspiration, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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Invisible No More: Teri Sluder

November 1, 2011 by admin 1 Comment

This video features the story of Teri Sluder, who lives with Myalgic Encephalomyelitis, hemialegic migraine, severe cognitive dysfunction and severe tachycardia. Teri is known as Justter on her YouTube Channel where she provides awareness and support to others.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, illness, inspiration, invisible disabilities, Invisible No More!, loved ones, myalgic encephalomyelitis, pain, personal story, spreading the word, support, tachycardia

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Invisible No More: Tell Your Story

October 15, 2011 by admin 3 Comments

This campaign was launched by the Invisible Disabilities Association to bring awareness to the challenges of living with invisible disabilities, education to friends and family and support to those living with debilitating conditions.

Go on a journey with these incredible warriors and let their invisible challenges and battles, as well as determination, strength and true grit become Invisible No More!

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, campaign, disability, event, illness, injury, inspiration, invisible disabilities, Invisible No More!, non-profit, outreach, pain, personal story, project, support, video

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Invisible No More: Margaret Ferrante, MD

October 15, 2011 by admin Leave a Comment

Through the Invisible No More! Campaign, the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Margaret Ferrante, MD, a woman who lives with injuries from a car accident and Dysautonomia. Dr. Margaret is the author of the book, No More Tears: A Physician Turned Patient Inspires Recovery. You can find Dr. Margaret on her YouTube Channel, DysautonomiaMD and on her website, DysautonomiaMD.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, awareness, campaign, disability, doctors and nurses, Dysautonomia, illness, injury, inspiration, invisible disabilities, Invisible No More!, personal story, project, support, video

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Invisible No More: Pete Monfre

October 15, 2011 by admin 3 Comments

This video features the story of Pete Monfre, a man who lives with Crohn’s Disease. Pete is the Interim Executive Director/President of ENZoology. Enzoology Education’s mission is to inspire elementary and middle school students to seek careers in science, technology, engineering and mathematics (STEM) fields.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, campaign, crohn's disease, disability, illness, injury, inspiration, invisible disabilities, Invisible No More!, pain, personal story, project, support, video

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DJ with Invisible Disability Educates Community About IDA

September 1, 2011 by admin 7 Comments

Several weeks ago, the Invisible Disabilities Association (IDA) was contacted by a young lady, Laurie Cohen, who is a DJ for a college radio station. She wanted to do a PSA (Public Service Announcement) to spread more awareness about debilitating illness and pain and the outreach of IDA.

After connecting with Laurie, we knew we wanted to tell her story. Laurie, 31, has neuropathy in her pelvis. She has been suffering from this permanent condition for 3 years, after she was rear ended in a car accident. She has severe neuropathic pain as well as loss of sensation in her pelvis. The severe pelvic pain prevents her from being able to sit.

Laurie said, “I have a ‘sitting disability;’ I can only lay down or stand up. This disability effects every aspect of my life.”

Here are just a few examples: Laurie has to stand up to get her hair cut, she lays down or stands up to eat meals, she stands up at the movie theater (she recently stood for two hours to see the new Harry Potter film).

Laurie shared. “It is a very tiresome disability and the worst part is that I ‘look’ completely normal so people either don’t understand or think I’m lying when I explain my disability.”

Last spring (2011), Laurie became a community volunteer for her local college radio station, KSCU Santa Clara 103.3 FM – The Underground Sound. According to Laurie, this is one of the only college radio stations that accepts DJ’s who are not students. She does a 1 hour radio show Friday evenings, which she considers a very enjoyable hobby.

Laurie commented, “My other chronic condition is major depression, so as you can imagine being a DJ is quite helpful!”

Laurie’s show is called, Fairyland and she goes by the name, “DJ Fairy.” It is a specialty radio show where she plays 1960′s “flower power” music, which she describes as “Mostly lesser known / obscure artists.” It seems that the college students and her community are thoroughly enjoying her program, because Laurie noted, “I have been getting great feedback about my radio show!”

It sounds like Laurie has really found a wonderful outlet to express her talents and music, as well as finding joy in the journey! Thank you, Laurie for spreading awareness about others living with invisible disabilities!

ARTICLE RESOURCES:

KSCU Santa Clara 103.3 FM – The Underground Sound

PSA for IDA by DJ Fairy on KSCU Santa Clara 103.3 FM

DJ Fairy on Facebook

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, audio, awareness, disability, injury, invisible disabilities, neuropathy, pain, personal story, radio, spreading the word

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IDA 2011 Keynote Speaker, Luis Carlos Montalván on David Letterman

July 19, 2011 by admin 20 Comments

Keynote Speaker for IDA’s 2011 Banquet, Luis Carlos Montalván and his Service Dog Tuesday were on the Late Show with David Letterman in July.

Fmr Capt. Luis Carlos Montalván is the author (with Bret Witter) of Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him. The book debuted on the the New York Times Best Sellers List!

This book is a story about one soldier’s battle after the war, with several debilitating wounds including Post Traumatic Stress Disorder and Traumatic Brain Injury. Until Tuesday came into Luis’ life, he could barely leave the house due to Agoraphobia. Read this incredible, real-life “tail” of how Tuesday rescued Luis and how they are bringing awareness and hope to others living with invisible disabilities!

Don’t miss Luis as Keynote Speaker at the 2011 IDA Honor Awards Banquet 10/2/2011 in Denver!

ARTICLE RESOURCES:

Luis and Tuesday on the Late Show with David Letterman in July (watch clip on YouTube).

Meet Luis and Tuesday at the IDA Awards Banquet 10/2/2011

ADDITIONAL RESOURCES:

Check Luis and Tuesday’s Event Schedule for an Appearance Near You

CNN: F mr. Army Captain: Dog saved my life

CNN: Service dogs essential to military

East Coast Assistance Dogs (where Luis found Tuesday).

IDA’s Service Animal Page

Luis Carlos Montalvan Received 2011 VOICE Award

New ADA Revisions Limit “Service Animals” to Dogs

Project HEAL – Service Dogs for Wounded Warriors

Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him – Book

Until Tuesday: A Wounded Warrior and the Golden Retriever Who Saved Him – Video

Woman with Cryoglobulinemia and Her Service Dog Bring Hope to Others

What Makes An Animal More Than Just a Pet? Pamphlet from IDA

RELATED STORIES ON IDA

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

Actress Candice Accola Gives Voice to Lyme Disease

Country Music Star, Clay Walker Diagnosed with MS

Former Professional Baseball Player, Ed Hearn, Battles Kidney Disease

George Clooney Battles Pain, Insomnia and Bouts of Loneliness

Hit Country Singer, Trace Adkins, Brings Awareness to Food Allergies

IDA Keynote Speaker, Luis Carlos Montalván on David Letterman

Kathy Buckley, Comedian, Actress, Motivational Speaker

Rocker Bret Michaels Lives with Type 1 Diabetes

Tim Tebow Makes a Difference for Youth Living with Illness and Injury

About

Filed Under: Becoming Visible, Celebrities, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, book, brain, celebrity, david letterman, disability, illness, injury, inspiration, invisible disabilities, late show, luis carlos montalvan, pain, personal story, post traumatic stress disorder, service dog, television, traumatic brain injury, until tuesday, veteran

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Secret Millionaire, Marc Paskin, Gives to Woman with Invisible Disability

June 9, 2011 by admin 6 Comments

This is Not a Story About Money, but of a Man Who Learned That Giving Time and Love is Priceless.

ABC TV’s hit show, the Secret Millionaire sends millionaires out to experience a life on

a very small budget and with the goal of finding amazing organizations doing incredible work in their community.

On the show that aired March 13, 2011, San Diego millionaire Marc Paskin embarked on an adventure that taught him some valuable lessons he will never forget.

“Marc Paskin came from a poor family and worked his way through college. He used his life savings of a thousand bucks for a down payment on a duplex. That was the start of a career in buying and selling real estate that turned him into a multi-millionaire” (ABC Secret Millionaire). Paskin is now a Real Estate Investor at The Paskin Group. He and his wife, Marsha were married for 28 years until she tragically passed away due to diabetes.

Paskin was sent to Detroit, Michigan for 6 days, with no credit cards and only $40 cash for groceries. Set out to meet people making a difference in the lives of others, Paskin met and volunteered with three different organizations.

First, he met Beverly at Young Detroit Builders, who focus on youth who have lived a challenging life and train them to manage their finances and how to do various construction jobs. YDB rehabilitates or builds new homes for low income families and people with disabilities. In the past 17 years, they have rebuilt 800 homes. At the end of the show, Paskin presented YDB with a check for $40,000.

Another group Paskin discovered was The Man Network, which uses volunteers from the neighborhood to patrol by car and foot. Their presence helps keep the neighborhood safer. At the end of the show, Paskin presented them with a check for $10,000.

Seemingly Paskin’s most touching experience was through meeting John from Really Living. This organization gives uninsured patients free transportation to medical appointments and some household help. So, Paskin signed up and picked up Matt for his dialysis.

During this appointment, Paskin met Courtney, a 24 year old mom on dialysis. Courtney had a kidney transplant four years prior, which went into failure three years before the show. Marc asked how he could help Courtney who shared she needed help with moving some things in her house to the storage. She said, ”Anything you do would be wonderful for me.”

Many living with debilitating conditions value a bit of time someone can spend with them to give a little help around the house or just be there as a friend. Loved ones often think it takes a ton of time or effort, but it is the little things that can bring joy to those whose battle illness and pain. Paskin commented, “I was not only helping her with chores around the house, but spending some time letting her know people care about her … care about her daughter.”

While spending time with Courtney, she shared about her 4 year old daughter, London, who was born at 27 weeks weighing only 1 lb 10 oz and had an emergency colostomy. London was in the hospital 2 months then Courtney’s transplant failed. Paskin commented, “I just feel bad about what she has to go through in life.”

At the end of the show, Paskin gave John at Really Living $40,000. In addition, he surprised everyone when he gave the last check to Courtney and her daughter in the amount of $20,000. Paskin said, “I see what she’s going through and she breaks my heart and i wanted to do something nice for her.”

To wrap up the show, Paskin shared a few things he discovered while on this mission. He said:

“I’ve always thought it’s good to do good things for people, but maybe I didn’t quite realize how much they appreciate it and how important it is. So I’ve learned a lot.” Paskin added, “Not everybody has money they can give away, but everybody can give some of their time and some of their love to people and it would be a better world if everybody would do that.”

These are words that we can take to heart, as we think about our friend or family member or neighbor living with a debilitating condition. We can all make a difference!

ARTICLE RESOURCES:

ABC Secret Millionaire

The Man Network

The Paskin Group

Really Living

Young Detroit Builders

ADDITIONAL STORIES:

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

About

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: charitable donations, disability, illness, injury, inspiration, invisible disabilities, news, personal story, television, video

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May is Big Awareness Month for Many Health Conditions

May 1, 2011 by admin 5 Comments

Every month of the year, there is a list of nationally recognized causes, illnesses and even fun and silly topics. The awareness spans from Teacher Appreciation and Cancer to Oatmeal and Spunky Old Broads Month.

Although every month brings awareness to very important diseases, illnesses and disorders, May seems to be loaded with them.

We found several lists, but none seemed complete. So, we did our best to add as many as we could find. If you know of any other National or State Awareness Months to be added to this list, please leave a comment on this page, along with a link to a diagnosis specific health organization or foundation’s press release or notice that we can confirm with. Also, please feel free to leave a post about any Awareness Days or Weeks! We would love to hear about them all!

May Awareness Months for Health Conditions:

Allergy/Asthma Awareness Month
ALS Awareness Month
Arthritis Month
Asthma and Allergy
Awareness of Medical Orphans Month
Better Hearing and Speech Month
Borderline Personality Disorder Month
Celiac Disease Awareness Month
Cystic Fibrosis Awareness Month
Ehlers-Danlos Awareness Month
Environmental Illness Awareness Month
Fibromyalgia Education and Awareness Month
Healthy Vision Month
Hepatitis Awareness Month
High Blood Pressure Education Month
Huntington’s Disease Awareness Month
Lupus Awareness Month
Lyme Disease Awareness Month
Melanoma/Skin Cancer Detection and Prevention Month
Mental Health Month
Multiple Chemical Sensitivities Awareness Month
Neurofibromatosis Month
Older Americans Month
Osteoporosis Awareness and Prevention Month
Stroke Awareness Month
Toxic Encephalopathy and Chemical Injury Awareness Month
Vasculitis Awareness Month

This is not a list of all illnesses, diseases and disorders that may cause debilitating symptoms. This is a list of conditions that have Federal or State status for Awareness Months or Weeks. As you may know, the Invisible Disabilities Association reaches around the world to all living with illness, pain, injury and disabilities … there are thousands! If you would like to bring more awareness to a health condition you or your loved one lives with, find out what month it falls under and contact an organization that focuses on that specific condition (ie: Arthritis Foundation) to obtain press releases, posters, flyers and more. Together, we can get the word out and educate the world!

ARTICLE RESOURCES:

But You Don’t Look Sick.com

National Health Information Center

McGraw Hill Professional

National Health Information Center

Pam Pohly’s Net Guide

PCI Health

Wikipedia