Categories
Accessibility

ADA Compliance Challenge Continues

Cleveland Clinic Counter

January 26, 1992 is an often overlooked date in the 30-year life of the Americans with Disabilities Act (ADA). Although July 26, 1990 deservedly receives most of the fanfare for this disability civil rights law, January 26th is the date when the ADA went into effect. In other words, no-one was held accountable for ADA violations for 18 months after the law was passed. This delay was designed to allow for public education on ADA’s nondiscrimination mandate in private employment practices, state and local governments, public accommodations, and telecommunications. So how successful was that initial public education period? Let’s take a look at public accommodations for this assessment.

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For the most part, ADA compliance in public accommodations has been a contentious process of people with disabilities giving notice of a public access violation and the owner or lessee complaining that they didn’t know there was a problem. Believe it or not, this is still happening 28.5 years after the ADA went into effect! Ignorance of the law is never a good excuse and, in these cases, deserves no extension of time to put things right. If this sounds harsh, remember disability access is only required in new construction, if alterations are made, and when readily achievable in existing facilities.    

People with dwarfism and disabilities have a long way to go before achieving equal access in public buildings and facilities. There are so many reminders of how much work remains to be done:

  • A medical facility, opened in 2020, installed a patient reception service desk that impedes communication between the patient and customer service representative. My attempt to walk behind the desk for eye-to-eye contact was blocked as a security violation
  • A restaurant service counter installed at an accessible height is loaded up with equipment and service is delivered at a counter so high the server and a customer of short stature or wheelchair user can’t see one another. When confronted, management denied any ADA violation 
  • A once accessible entrance door into an office building was made inaccessible when the glass door was replaced with hurricane glass making it too heavy to open
  • Bathrooms in a newly renovated building have inaccessible faucets and a door knob instead of a handle
  • Staircases have useless or missing handrails
  • Trains, taxis and ride share services often cannot be boarded
  • Poor elevator maintenance or no elevator at all
  • Inability to move around in a store due to blocked aisles or inaccessible paths of travel
  • Car rental establishments refusing to allow use of pedal extensions
  • Service animals are refused admission  
  • And so much more

As discouraging as this list appears, it’s important to remember how far we have come in the last 30 years. Equal access in public places is more prevalent and, where absent, is enforceable. The challenge is for people with dwarfism and other disabilities to claim our rightful place in society and be ready to monitor and demand enforcement of the ADA when it is denied.

Are you ready to challenge ADA public access violations?

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog, find several retail links to my book—“Pass Me Your Shoes”—and anticipate the summer 2021 publication of book III—Always An Advocate—in my dwarfism trilogy.

Categories
Dignity Disability Rights

“Death with Dignity” Laws Deadly to Disabled

National Sanctity of Human Life Day—on January 22—celebrates the value of every human life from the pre-born to the grave. We are familiar with threats to the unborn, but what about the seniors and people with disabilities at risk of dying from physician assisted suicide?

“Death with dignity,” as physician assisted suicide is euphemistically called, is legal in Washington, D.C. and eight states—California, Colorado, Hawai’i, Maine, New Jersey, Oregon, Vermont and Washington—by statute and in Montana by a court ruling. And the momentum is building. Indiana, New Mexico, New York, and Virginia all have bills pending in 2021.

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The coalition of groups opposing physician assisted suicide span the political spectrum from right to left: pro-life groups, faith-based organizations, national disability groups, and medical organizations. I’m represented in multiple places on this spectrum, and support the reasons disability groups and leaders give for opposing laws designed to cut our lives short.

1. It’s a financial not a medical decision
“The legalization of assisted suicide is a deadly mix with our broken, profit-driven health care system, where financial pressures already play far too great a role. Direct coercion is not even necessary. If insurers deny, or even merely delay, approval of expensive, life-giving treatments, patients will, in effect, be steered toward assisted suicide, if it is legal.”
Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund

2. Abuse of elders and people with disabilities is a growing, but often undetected problem, making coercion virtually impossible to identify or prevent.

3. Doctors are fallible and wrongly predict how long a terminal patient might live. This causes people to give up on treatment and accept a premature death.

4. People who ask to die could be treated for depression or given better palliative care instead of lethal drugs.

5. Some see physician assisted suicide as a duty and the only way to stop being a burden to loved ones.

6. Intractable pain is often used as the main reason for physician assisted suicide laws. Yet, Oregon death doctors haven’t reported pain as being in their patient’s top five list.

7. For anyone dying in discomfort, palliative sedation is legal in all 50 states.

8. The requirement that physician assisted suicide be limited to people who are terminal and give voluntary consent is not enforced or investigated.

9. Disability advocates have long known that ‘quality of life’ is code for ‘Better Dead Than Disabled.’ Thankfully, on March 28, 2020, the federal Health and Human Services, Office of Civil Rights, warned that policies that deny treatment based on quality of life judgments are discriminatory and unlawful.

10. Seniors and people with disabilities don’t need to die to have dignity. We reject society’s view that people who deal with incontinence and other losses in bodily function lack dignity.

I can attest that disability is not a fate worse than death. What do you think?

In preparing this post, I acknowledge the resources provided by the Disability Rights Education and Defense Fund at https://dredf.org/public-policy/assisted%20suicide/ and Not Dead Yet at https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide.

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

Categories
Transportation

Which Animals Fly for Free?

Service Dog
Image by Paul Brennan from Pixabay

Ever traveled on a plane seated next to a passenger with a yappy dog? Maybe even a miniature horse. Chances are you’ve been on board with one of the 319,000 service animals that airlines transport annually given the Air Carrier Access Act mandate that foreign and domestic air carriers not discriminate on the basis of disability.

Well, as of today (January 11, 2021), you can expect to see a change in which animals fly for free and which ones pay their way as pets. Under a revised U.S. Department of Transportation (DOT) rule, dogs of all breeds and types are exclusively recognized as service animals—and fly for free—

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if they are individually trained to do work or perform tasks for the benefit of a qualified individual with a disability. Miniature horses and emotional support animals no longer qualify as service animals, in the context of air travel, and will be treated as pets subject to more restrictions and fees.

The DOT made the rule change fully aware that removing emotional support animals from the service animal class was a contentious issue with no perfect solution likely to satisfy all stakeholders. Here’s why they made the rule change anyway:

(1) the increase in service animal complaints from passengers with disabilities;

(2) the inconsistent definitions among Federal agencies of what constitutes a “service animal;”

(3) the erosion of public trust in legitimate service animals due to requests to transport unusual species of animals onboard aircraft;

(4) the increasing frequency of travelers fraudulently representing their pets as service animals; and

(5) the increase in misbehavior by emotional support animals—including urinating, defecating, growling, and in some instances, harming people and other animals at the airport or on the aircraft.

Of the approximately 15,000 comments in response to the Notice of Proposed Rulemaking, more than 10,000 concerned the transport of emotional support animals. About one-third of the comments favored excluding emotional support animals from the service animal definition and treating them as pets. The two-thirds who opposed emotional support animals being treated as pets instead of service animals highlighted the needs of those with a wide range of serious mental and emotional disabilities for whom medication is ineffective in relieving stress, anxiety, and depression. The low income of many in this class of disability would also make flying unaffordable given what airlines charge for pets.

Among other things, the new rule allows airlines to require—

—passengers to submit forms related to the service dogs Health, Behavior and Training and, for flight segments of eight hours or more, to attest that the dog has the ability either not to relieve itself on a long flight or to relieve itself in a sanitary manner.

—a service animal to fit on their handler’s lap or in their foot space on the aircraft.

—a service animal to be harnessed, leashed, or otherwise tethered in areas of the airport that they own, lease, or control, and on the aircraft.

There is so much more in this final rule published on December 10, 2020. You can find it in the Federal Register at 85 FR 79742, https://www.federalregister.gov/documents/2020/12/10/2020-26679/traveling-by-air-with-service-animals.

Your comments on this controversial rulemaking are welcome.

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

Categories
Disability pride Medical

Viewing History Through Prism of Current Events

March of Dimes Poster Boy

When checking out of the grocery store recently, I was asked if I’d like to add another $5 to my bill for the March of Dimes. I politely declined. I could afford it, but the organization offends my pro-life views.  Even my recollection of an archival picture of a very cute March of Dimes poster boy—my husband Robert at age 11—did not change my mind.

Indeed I almost skipped reading the “This Day In History” entry for January 3, 1938 when Franklin Delano Roosevelt (FDR) founded the March of Dimes. I’m so glad I went beyond the headline.

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I learned that FDR’s charitable concern came from his contracting poliomyelitis that paralyzed his legs 11 years before he became President. The March of Dimes began as an association of health scientists and volunteers funding physical rehabilitation and research for a polio vaccine. Paralysis disabled one out of 200 people infected and death was the end result for two to 10 of those who were paralyzed. Given the rapid pace of polio’s spread among children, the foundation could not raise money fast enough to keep pace with the contagion tagged as “the most feared disease of the 20th century.”

When the donations from wealthy benefactors did not meet the need, FDR appealed to the general public for funds. Despite a celebrity’s suggestion to send dimes to the President being said in jest, the public flooded the White House with 2,680,000 dimes and thousands of dollars in donations.

FDR died before Dr. Jonas Salk produced the first successful polio vaccine in 1955, but this March of Dimes funded research is an amazing accomplishment for FDR, Salk, and the organization. If I had only viewed the March of Dimes through the prism of their current pro-choice practices, I would have missed this historical nugget when the world is focused on COVID-19 vaccines. I would also have missed the changed perspective on how to publicly portray disability.

The presidential memorial commission won the debate on how to recognize FDR’s dependence on leg braces and a wheelchair for mobility. The 1997 Memorial opened with three FDR statues none of which revealed his disability. It deferred to FDR’s directive, and media acquiescence, to never photograph him in a wheelchair, walking, or being transferred from his car. As the President who led America out of the Depression and through World War II, he believed it was important to show strength.

This hiding of FDR’s disability was corrected on January 11, 2001 when a fourth statue was added. A life-sized statue shows FDR in his wheelchair at the Memorial entrance. It’s an accurate view of the man whose strength was in his leadership not his legs. One visitor teared when he saw a busload of children in wheelchairs entering the exhibit. They would see that disability doesn’t limit what people can accomplish and should not be hidden.  

What would you miss if you viewed history through the prism of current events?

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

TRIVIA
Polio plagued America for 39 years from 1916 to 1955.
At age 39. FDR contracted the virus.
Salk tested the first successful polio vaccine at age 39.

Categories
Medical

Replace Resolutions with Decisions

Choice: one way or another
Image by Pete Linforth from Pixabay

Most New Year resolutions fall by the wayside by mid-January. So next year, why not break the cycle of failure and replace resolutions with decisions? Let’s think about December 31st in a new light and celebrate it as #MakeUpYourMindDay.

To narrow the scope, this post focuses on decisions that demand due diligence before signing a contract or making a medical decision. Remember, failure to be systematic can be hazardous to both health and safety!

People of faith will always preface every decision with prayer.

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“Don’t worry about anything; instead, pray about everything.
Tell God what you need, and thank him for all he has done.”

Philippians 4:6, New Living Testament

Homework is not just for kids; it’s a fundamental step in any big decision. For example, those looking to buy an accessible vehicle in which to load a wheelchair or scooter need to gather facts on the many options—a van or a car, a lift or a ramp, hand controls or pedal extensions, new or pre-owned? Homework involves an evaluation of physical abilities, financial resources, and businesses specializing in vehicle modifications.

It’s good to talk to people who have walked the same road you’re on. Disability support groups and social media are great resources for finding people ready to share their experience. Three private and moderated Facebook groups come to mind—Dwarfism, Dwarfism Surgeries & Pain Management, and Meg’s Support Group for People with Disabilities. In the case of a doctor recommending a specific medication or surgery, ask group members for their opinion on the doctor, hospital, and medical plan of action. Find out if they were helped or harmed.

“A wise man will hear and increase in learning,
And a man of understanding will acquire wise counsel,”

Proverbs 1:5, New King James Version

For complex and difficult decisions, consultation with experts is critical. For example, when dealing with a physical and/or mental health condition that precludes working, the expertise of doctors, representatives, and/or lawyers is needed to navigate Social Security benefit applications and, if necessary, appeals.

A risk/benefit analysis is imperative when making decisions about surgery and medication. Make a list of the pros and cons based on your own assessment of side effects, pain, and mobility; medical advice; manufacturer warnings in patient literature; testimonials from past patients; and the likely outcome if the recommended treatment is declined. Fear is a factor, but should not push us away from beneficial treatment.

Once you’re hovering over a particular decision, sleep on it until you have peace of mind. Finally, after you’ve made a decision, don’t question whether it was the right one. Trust the process of allowing God to lead you to the right decision.

“A man’s mind plans his way,
But the Lord directs his steps.”

Proverbs 16:9, Revised Standard Version.

Let’s make 2021 a time to make wise medical decisions for ourselves and be available to help those doing due diligence on their decisions.

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

Categories
Celebrations

Finding Joy at Christmas

Christmas joy

Many people look forward to Christmas all year long.  Every December 26th my father began the countdown saying, “There are only 364 days until Christmas.” But is there joy in Christmas 2020?

Although Christmas cards, the annual family photo, and newsletters can still be mailed, hundreds of thousands are too sad to write or take photos given the death of loved ones who succumbed to COVID-19 during the year. And for those who did not lose loved ones, the loss of jobs and income makes the cost of buying and mailing a card unaffordable.

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Santa sends letters to children from Santa Claus House in the North Pole, Alaska. But pandemic safety restrictions cancel sitting on Santa’s lap and limit greetings to Zoom, or seeing Santa wearing a mask through plexiglass. Where’s a child’s joy in that? 

Does the daily pick of Christmas stories on TV bring joy? Or are they just a predictable 90 minutes watching families come home for the holidays, buy gifts, donate to charity, bake cookies, drink hot chocolate, climaxed by an unexpected romance ending with a kiss?

Neighborhoods sparkle with Christmas lights, Santas, sleighs, reindeer, and snowmen. But is there joy in the morning? The lights are off and the blow-up figures lay collapsed on the ground. Nativity scenes are hard to find. Not even the traditional Christmas stamp from the United States Postal Service bore any resemblance to the Virgin Mary and baby Jesus revealed in Scripture.

Live Christmas trees are in plentiful supply for the 30 million plus people expected to buy one this year. Perhaps the trend away from “fake” trees is a sign that people are looking for something real this year—something filled with fragrance, life, and joy.

So where do people go to find the true joy of Christmas? The answer is church— the most likely place to hear the Christmas story in Luke 2:9-12:

“Suddenly, an angel of the Lord appeared in radiant splendor before them, lighting up the field with the blazing glory of God, and the shepherds were terrified!  But the angel reassured them, saying, “Don’t be afraid. For I have come to bring you good news, the most joyous news the world has ever heard! And it is for everyone everywhere!  For today in Bethlehem a rescuer was born for you. He is the Lord Yahweh, the Messiah. You will recognize him by this miracle sign: You will find a baby wrapped in strips of cloth and lying in a feeding trough!” 

The Passion Translation

This good news is heard by regular church attendees and 124.4 million CEOs (Christmas and Easter Only). They come to hear Jesus message of full inclusion—for everyone everywhere—seniors and youth, poor and rich, weak and strong, disabled and able,  people of all colors and languages. The joy is in believing that Jesus came to rescue us all. 

So where will you go this Christmas to hear the most joyous news the world has ever heard?

For more of my writings go to https://angelamuirvanetten.com to subscribe to my blog for automatic delivery of weekly posts to your email inbox and for retail links to my book, Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.

Categories
Motivation

Underdog Motivation

can vs can't
Image by Gerd Altmann from Pixabay

People with disabilities have a lot in common with underdog athletes. When someone says “you can’t,” we counter with “I can.” We know we have the ability to compete.

As the all-time favorite underdog, Buster Douglas fought the 1990 heavyweight boxing championship match believing he could beat the undefeated Mike Tyson, the 42-1 favorite. When Douglas knocked Tyson out for the win his underdog hand was raised high declaring him the champion.

Baker Mayfield, a National Football League Quarterback, said it well: “I was the undersized underdog who people never gave a chance. From that the motivation to prove people wrong just grew and grew.”

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Likewise these seven people with disabilities believed they could win and were motivated to prove people wrong.

  1. DJ Gardner, an amputee without arms, manages a carpet cleaning business and uses his feet for daily living activities. Gardner ignored the doubts people had about him. His advice? “Don’t let obstacles stop you, there’s always a way around it, through it, under it . . . it can be done.”
  2. Josh Sams, an amputee without lower legs, was not expected to walk again. But after dozens of surgeries and months of rehabilitation he defied medical expectations and can walk with prosthetics.
  3. Dan Mancina lost 90 percent of his vision while working as a professional skateboarder. Even though most people assumed blindness would end his career, he continues to skate.
  4. When her daughter with dwarfism started school, Erin Pritchard’s mother was told that Erin wouldn’t achieve anything. She was assumed to have low intelligence. Erin showed otherwise by earning a PhD, teaching at a university, and writing a book— Dwarfism, Spatiality and Disabling Experiences—now available on Amazon.com.
  5. For two years Todd Scanlon, a man with Down Syndrome, begged a contractor for work as a scaffolder. Finally, the contractor gave Todd a chance and discovered that his disability didn’t hold him back. Todd did all the tasks required of him, got on with the guys, and began an apprenticeship to earn his qualifications.
  6. Katherine Wolf had a small chance of surviving a brain stem stroke that affected her vision, hearing, and mobility. She chose to go with what she had and found joy in her new life, rather than wish for her old life.
  7. The parents of 15-year old Melanie Jacobs were told to prepare for her funeral when she developed a rare debilitating condition. Fifteen years later she is alive and well. Melanie became a top model who used a wheelchair. She refused to accept the prognosis that she’d never walk again and underwent surgery that made walking possible.

The lyrics of Alicia Keys “Underdog” 2020 release capture the underdog’s spirit:

“They say I would never make it
but I was built to break the mold.’
. . .This goes out to the underdog
Keep on keeping at what you love
You’ll find that someday soon enough
You will rise up, rise up, yeah.”

“For I can do everything through Christ, who gives me strength.”
Philippians 4:13, New Living Translation

This post was inspired by #NationalUnderdogDay. To read more of my writings, go to my website at https://angelamuirvanetten.com, subscribe to my weekly blog, and find retail links to my book, Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.

Categories
Disability Rights Inclusion

From Minus one Million to Plus Seven Million

Education
Image by Ernesto Eslava from Pixabay

The last 55 years has drastically changed the educational landscape for American children with disabilities. In 1975, one million were excluded from the public school system and, by 2018, almost seven million received special education services.

For centuries, children with disabilities were considered unteachable and not worth educating. For example, children with dwarfism were often hidden at home or destined for display as freaks or entertainment in the circus. Schools were not required to make accommodations and many children were sent to special schools that offered a separate and unequal education.

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So what accounts for the drastic change? The answer points squarely to the passage of the Education for All Handicapped Children Act on December 2, 1975 (later renamed the Individuals with Disabilities Education Act, IDEA). The law passed because the federal government decided it was in the national interest to help States and localities provide programs to meet the educational needs of children with disabilities. IDEA mandated that children with disabilities receive a free and appropriate public education in the least restrictive environment.

So with December 2nd now designated as #SpecialEducationDay, the focus is on IDEA’s implementation. It’s one thing to get a law passed, it’s quite another for it to be followed. As a former special education advocate, I attended hundreds of Individual Education Plan (IEP) meetings to resolve IDEA’s hot button issues on student eligibility, placement, accommodations, services, and fidelity.  

In determining whether a student is eligible for special education services, parents and school personnel often disagree. Psychological and/or neurological evaluations are needed to resolve the dispute. Once eligibility is settled, an annual IEP is written to document the student’s free and appropriate public education. Measurable goals and objectives are included to ensure the student makes meaningful progress. The IEP also contains needed services, placement, and accommodations.

Placement is an individualized assessment based on the needs of each student. It is by far the most contentious IEP issue as it wrestles with the mandate that students be educated in the least restrictive environment. IEP teams decide what percentage of the day a student will be educated in a regular classroom, a separate special education classroom, a combination of the two, a separate school for children with disabilities, virtual school, or hospital homebound.

Inclusion in regular classes is IDEA’s default position and a student will only be segregated from their peers when the special education services are more appropriate in another setting. School district budgets and resource allocations are not supposed to be part of the equation. But sadly, students are often relegated to separate classes or schools because funds are not available to support the student’s needs in the regular classroom or neighborhood school.

Although a lot of progress has been made since 1975, there is a long way to go before students with disabilities are assured equal protection under the law. Advocacy is needed to secure adequate funding for special education. Vigilance is vital to ensure children with disabilities are identified early and receive equal education opportunities. For more of my writings go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to Pass Me Your Shoes: A Couple with Dwarfism Navigate Life’s Detours with Love and Faith.

Categories
Celebrations

Wedding Anniversary Cards

Anniversary cards

My 39-year marriage to Robert has defied the odds in two respects. According to United States Census Bureau data, the marriage rate for people with disabilities is much lower than for the general population and the divorce rate is much higher.

After a whirlwind romance, God closed the 8,500 mile distance that separated us in two different countries. And when our marriage hit the wall after 12-years, God intervened to help us work through our problems in marriage counseling.

We share our story to encourage others and to remember what God has done for us.

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“Remember His wonders which He has done,
His marvels and the judgments spoken by His mouth,”
Psalms 105:5. New American Standard Bible

Over the years we’ve celebrated our anniversaries in various ways—dinner out, flowers, jewelry—but the one constant has been exchanging anniversary cards. And despite my desire to declutter, I can’t toss the 80 anniversary cards I’ve saved since our first anniversary in 1982!

“Love is a touch, tender with care,
a meaningful look, secrets to share . . .
Love is excitement, a joy ever new,
love is a faith that dreams can come true.”
Hallmark (1982)

On several anniversaries, I placed cards from prior years in unlikely places around the house for Robert to find. I thought it was fun to surprise him with a card in the refrigerator, a dresser drawer, or wherever he didn’t expect it. But Robert was unimpressed with what he viewed as recycled cards. The addition of a new card each year didn’t erase the memory of the one and only year I forgot and gave him a card from the year before. 

On our tenth anniversary in 1991, since we didn’t have an engagement ring, we added a ruby eternity ring to my wedding ring finger. As Robert wrote in his card to me:

“It’s been ten marvelous years having you at my side in the good ones and the difficult ones. . . through our marriage we have grown stronger and closer to Christ . . . you have made a positive change in my life.”

As we faced down uncertainty in both our careers on our 15th anniversary, we shared an American Greetings card:

“Time may change a lot of things in our lives, but one thing it can never change is the way I feel about you. . . with every passing year you become more beautiful and precious to me. Today and always my heart belongs to you.”

And here’s to closing with some beautiful one liners:

“If I could go back in time to before we met I’d look for you and find you sooner so I could love you longer.” Sunrise Greetings (2012)

“I always thank God for your love.” American Greetings (2013)

“I found the one my heart loves.” Song of Solomon 3:4 (2014)

“I know we’re right where we’ve always belonged—together.” Hallmark (2017)

“You’re the man I’d marry all over again.” (2018)

“Two hearts together, forever, whatever life brings. Hallmark (2020)

For more writings on our marriage, go to https://angelamuirvanetten.com for retail links to my book, Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith and subscribe to my blog for automatic delivery of weekly posts to your email inbox.

Categories
Medical

Thankful for Aortic Valve Replacement (AVR)

Walking with wires

Give thanks to the Lord, for He is good! ∞ 1 Chronicles 16:34a New Living Testament.

Who would have thought changing doctors would save me from congestive heart failure and death within a year? But I’m thankful that my new doctor noticed that my heart murmur was kind of loud and referred me to a cardiologist. Imagine my surprise, at age 59, when the cardiologist recommended aortic valve replacement (AVR) surgery. As a little person with many joint anomalies, I always anticipated the possibility of orthopedic surgery, but heart surgery never crossed my mind.

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After finding a medical team at Johns Hopkins hospital, I added a prayer team. I prayed as I did before Robert’s hip replacement surgeries. Some trust in chariots and some in horses, but we trust in the name of the LORD our God. ∞ Psalm 20:7 New International Version. I especially prayed for wisdom on whether to implant a mechanical or biologic aortic valve. I picked the mechanical valve which requires blood thinning medication, but lasts the rest of my life; the biologic valve requires no medication, but wears out and could require a reoperation for replacement in about ten years.

On February 19, 2013, I underwent AVR surgery to split open my breastbone, stop my heart, hook it up to a heart-lung machine, replace the damaged aortic valve, and restart my heart. Major surgery! While waiting in the OR queue, I read various Psalms instead of thinking about the surgical risks of bleeding, blood clots, irregular heart rhythm, infection, kidney problems, stroke, or death.

My anesthesiologist talked to me about the limited range of motion in my neck that would make intubation difficult. To avoid cutting off my airway with fatal consequences, she chose to intubate me while I was awake; this gave her accurate feedback on how I was tolerating the intubation tube. My surgeon, also challenged by my airway restriction, was unable to insert a camera to check for life-threatening air bubbles. Instead, he squeezed my heart with his hands to expel any hazardous bubbles.

Thank God I survived the surgery without complications. And the surgeon’s post-surgery concern—that I would forget instructions not to lift more than five pounds for six weeks and would be back in the OR to realign my rib cage—was resolved by Robert, my in-house rehabilitation engineer. Robert accommodated my daily living activities of accessing a chair, toilet, bed, or car without lifting my entire body-weight of 72 pounds.

Fast forward seven years—my electrocardiograms are boring and my echocardiograms are good.  This is not to say there are no challenges.  Achieving a therapeutic International Normalized Ratio (INR) is an ongoing struggle. Frequent nontherapeutic INR readings show my blood as too thin and susceptible to internal bleeding or too thick and prone to blood clots clogging the aortic valve. As a result, my medication dosage often needs adjusting and careful monitoring of my vitamin K intake is critical. But I thankfully accept lifestyle changes that come with life-saving surgery.

This blog post was first published in LPA Today (Fall 2020). It is a condensed version of a chapter in my book—Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith. Go to https://angelamuirvanetten.com for book retail links and subscribe to my weekly blog for automatic delivery of posts to your email inbox.