Air on a Magnetic String: Final visit to a clinical trial

A Brief Explainer: December 12^th, 2024 marked my third study visit for a clinical trial. In essence, this means that two full years passed since I started. My previous visits are described in past posts linked below:

Visit 1: https://nighttrail.blogspot.com/2023/12/out-of-body-into-mind-updates-on-being.html
Visit 2: https://nighttrail.blogspot.com/2022/12/lying-in-space-my-time-in-clinical-trial.html

 

The purpose of this is to use MRI (which magnetically scans tissue) to assess muscle health in people with muscular dystrophy. Scientists look at muscle integrity in areas like the chest and legs. With that info, they can provide better medical care for people with muscular dystrophy.
--------------------------------------------------------------------------------------------

“Why didn’t we do the biceps last time?” one of the technicians asked me.
“Study design, maybe?” I answered.
(Keep reading for more info.)

At this very moment, around 10 AM, my garb was a little different. The date was December 12^th, 2024. My maroon Canada shirt posed with periwinkle hospital pants and gray patient slippers. Apologies to all the metal fans reading this, but the metal had to sit aside. Including my phone. Astute observers will already realize this is about an MRI.

After all, this has happened each year since 2022. This third clinical trial visit for the same trial proved to be my last one. Much mental preparation went in. So let’s jump back earlier in the morning.

6:50 AM rolled around on my alarm, prompting a chance for me to confront the day. With a simple smoked salmon sandwich (bread and salmon and butter). My simple task: get to the hospital by 9 AM for my final visit.

Spent time getting ready, picking a shirt without metal but sticking to pants with metal still. (What pants can you wear outside that lack metal?) Around 8:20 AM, I summoned the Uber – opting for the cheaper Green option, despite the possibility of a little more wait. Ten min zoomed by as I collected my coat and bag, including a library book to continue reading. Now in the car, I fastened my seatbelt and read a chapter or two of my book.

Arrived at basically the meeting time. Sitting on a couch, I realized that the meeting spot was the third floor (like the last two times). Correcting this mistake led me to meet with the study coordinator. We reviewed the Consent form required for any trial. What wasn’t usual: the mildly awkward urine collection cup was handed at the start. We went to the MRI Subject Room and I changed my clothing appropriately. Even pulled out my book …Except the only thing I conveyed is that I had a book ready. As you might guess, it was time.

The enter to enter the space cave (MRI) had arrived. A chat with a friend, of all things, helped me pin down the time it started: 9:49 AM or so. Between then and 12:34 PM, the MRI and I had an intimate discussion about the nature of existence. There was a third party: earplugs coupled with headphones. The mechanical being (MRI) probed with alterations of hard-hitting industrial beats and surreal quiet.

Like last time, classical music helped me through this lengthy lie-down. Floating by, tunes like Bach’s “Air on a G String”, Pachelbel’s “Canon in D”, Ravel’s “Pavane Pour Une Infante Defunte” and OF COURSE Debusssy’s “Clair de Lune”. This little game of “guess the tune” kept my attention for a while.

“How in the universe did you remember these?” you may ask me.
To which I reply, “by mentally conjuring the names to write down later!”

The MRI, of course, was split into four basic components: 1) the right calf 2) the right biceps (I told you it would be important!) 3) the whole body and 4) the respiratory system.

The right calf was placed in the holder and wrapped with the magnetic coil, which was a little familiar. This step was not much of a challenge and gave me a slight arrogance. During the process, one MRI technician, a jovial guy filled with laughs and smiles from the previous two trial visits, talked to me fairly often during this. Checking in and making sure I knew what was going on ahead of the PULSATING SOUNDS.  At the end of this segment, the other tech, also friendly, asked if I wanted a break.

Next, to my surprise, we skipped right upper leg straight for right biceps. Body had to be rotated strangely to capture the biceps with my body slightly pinned against the left wall of the MRI, with a wedge separating my arm; what made this even stranger was not moving my right fingers, which could throw off the results.

A break again with the MRI table being rearranged anyways. Went to the bathroom, to collect that one item of study, and came back, having completed at least one part.

Subsequent scan was the whole body with the coil first across my chest, forcing my arms by my side. This made me a little self conscious about my breathing, trying to limit my chest’s elevation.  The tray moved inward and outward, with me as a passenger. Warm coil faced off against the cool exhaust streaming from the MRI end. My head poked out for a few minutes. Coil moved down to my stomach and to my legs, capturing the full breadth. The machine made frequent, sustained sounds as I was given some breathing instructions.

Ensuing and final scan was respiratory, largely targeting my chest again. I was told to be especially careful with breathing so respiratory motion “was not visible.” Once again, the MRI was fully engaged in conversation with me, including with breathing tasks. During this second half – whole body and respiratory – I was asked to INHALE as slowly as possible for some scans and another was EXHALE as slowly as possible for the scan. This was challenging, making my chest sore.

 “Maybe this will be over by 12:30 or so,” me wondering out loud. Surprisingly close of a guess! On my way out, I asked the main-stay tech about, well, all this. He commented that my muscles and the scan quality looked good – in spite of my squirming.

After I changed, I removed my sweater again. The reason? There was a blood draw (another conserved part of the trial). Checking a couple spots on my arm, the tech drew blood from my “classic” vein on my left arm. A seemingly thicker needle was a little more uncomfortable, but it was over quickly.

With a moment to breathe, I jotted down some notes about the trail in the “0T” room. Why was the room 0 Tesla (as in the magnetic unit)? Well, the tech explained that the name is probably facetious. Most rooms are 0 Tesla (not magnetic) but this one had a mock MRI machine to help young children get used to the setup.

The study coordinator stopped by and asked about the physical therapist but I hadn’t met her yet. A while later, I was brought a turkey sandwich and a Coke (one of my rare requests for soda). Trying to eat and take notes was tough. Maybe another ten minutes later, the PT came in and realized that a different form was needed. I finished up the last bite of my turkey sandwich as she returned.  Of course, the PT was here to perform functional tests with me.

The ”cherry can stacking”, “coin sorting”, and “6 minute walk test” all returned from before. For those unfamiliar, the 6 minute walk test forces you to pace back and forth – without running – until the timer runs out. Though it’s certainly not fun, the test is widely used to look at walking. Many tasks were in fact not challenging for me, yet were a struggle for people with more severe forms of muscular dystrophy. That is not to claim perfection. After all, the balancing on one leg exercises were a bit tricky for me. Our final test involved, again, breathing. However, this time, I had to forcefully inhale and exhale, which taxed my chest. With that aspect completed, I finally sipped the rest of my Coke before it just became diluted.

After collecting my sweater, coat, and all that, the finality set in. I went to the study coordinator’s area and completed a few remaining questions. (A new medicine had to be added to the list – the joys of gaining age.) Lastly, I shook hands with the professor in charge and spoke with him for a few minutes.

Our chat elucidated something simple about the study design. I asked, “why study the biceps this time” in deference to the question from earlier in the day. The answer was simple: there was a physical therapist this time, unlike the last visit. Simple variation reared its head. Last year, I had two days for the trial, and yet only one day this time.  In a trial like this, many aspects must be flexibly handled. This trial was impressive and exciting to participate even more so with those changes!

Walked back with the study coordinator, and thanked her one more time. I got into the Uber (Green again) bound for home. Getting home put me in the awkward spot between “real tired” and “feeling hungry”. Holding out awarded me a great home-cooked meal, sealing all this off well.

Now you may wonder, why enroll in a clinical trial? There is a modest money they give. Hardly a major reason for me. Mom’s cooking is great. Still not the biggest motivation!  Muscular dystrophy research is important to me, especially as someone living with it. Surely you must realize my motives are loftier, more passionate.

Above all, I felt excited. To shatter my typical routine. To help the pursuit of knowledge. To give a high-minded contribution. As I exclaimed to various people, “this is for science!”

Disability is not a tragedy: A Review of the Being Heumann Memoir

 Content warnings: discussions of ableism, violence, the Holocaust, and the Israel-Palestine conflict follow below.

A Disability Advocate
Disability is seen as a cause of despair, as a life merely of limits. The great advocate Judy Heumann, in the 2020 memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, powerfully dispels this perception. Her activist trajectory ranges from unwitting beginnings as a child stricken with polio to international stature as a senior official in the U.S. government. At first, I lacked familiarity with the trail she blazed. Now I know. From Judy Heumann’s influence, we have the power to build a more inclusive, loving world. 

 Many lines stand out in Judy’s incisive descriptions of disability. Three examples of disability as a “bad thing” in popular art are laid out in the book, highlighting the ubiquity of this experience. Being a sci-fi fan, I am drawn to a particular character.

“A man acquires a disability and turns villainous in the face of the agony.
Star Wars’ Darth Vader.

Disability is seen as a burden, a tragedy.

But what if it wasn’t?
What if someone’s story began with the words: ‘I never wished I didn’t have a   disability’” (Heumann 201).

Herein there are two fundamental poles of disability – tragedy and joy. Darth Vader – a paraplegic man sustained by a high-tech suit – is described as the death of his previous identity, emphasizing the tragedy pole. However, what if the story prioritized disability joy? Briefly, in Return of the Jedi, he acts of his own will to end suffering for his son, showcasing a sliver of joy. What if Darth Vader had gotten to simply live after ‘waking’?

Judy wielded her perspective as a chisel upon the statue of the world, a world of barriers. A seasoned bureaucrat working in the Clinton administration (during the 1990s). The first World Bank Adviser on Disability and Development. Most famously, the newly created Special Adviser on International Disability in the U.S. Department of State. There, she guided U.S. efforts to ratify the instrumental United Nations Convention on the Rights for People With Disabilities, joining many countries. In the course of duties, for example, she raised accessibility concerns about the Amman, Jordan city hall. Judy exclaims, “Two weeks later the city hall in Amman had a wheelchair ramp, designed in the architectural style of the building” (194). As part of her legacy, the American-led disability rights movement expanded worldwide.

Such an instrumental person deserves our attention and admiration for surpassing infinite obstacles. Below, I share her accomplishments.

As a childhood survivor of polio, Judy began using a wheelchair in the 1950s, long before disability was recognized as a matter of civil rights. The seed of activism was planted in Judy by her parents. Ilse and Warner Heumann were both orphaned by the Holocaust and sent to live in the U.S. as teenagers, incubating a strong sense of justice in them. Just down the page, Judy explains that the Holocaust sought to kill people with disabilities for being a threat to genetic purity. The stage is set for her fight with resistant institutions.

She was blocked in ways that are hard to imagine for those of us born in the U.S. after 1990. “Judy is a fire hazard” (8), said the principal of a public school about her wheelchair. Even after studying Hebrew, she was denied a spot at the local yeshiva or Jewish day school. Home instruction was (seemingly begrudgingly) permitted until one day she was accepted into a special school for students with disabilities in a basement. An inch closer to education integration.

Enduring this gauntlet set the stage for Judy to enter ‘real’ high school, move onto university, and focus on her mission of teaching others. At the time, teaching was not considered a profession for anyone with a disability. Though the barriers did not desist, she did resist.

For the heinous crime of….wanting to teach from a wheelchair…she was declared insubordinate by the New York City Board of Education. This denial of teaching license catalyzed her explosive growth as an advocate. The American Civil Liberties Union – a group that very well should have offered full-throated support – refused to take the case so she “called [a disabled guy she knew at the New York Times] and told him about the Board of Education’s decision” (55), kicking up a storm of public scrutiny. In a public court case, she proved the board decisively wrong and started teaching students with and without disabilities, demonstrating her determination.

The book’s closing chapter asserts the 504 sit-in as her activism’s cornerstone. Note that “504” is a special number that describes educational plans for students with disabilities. I was on one. Section 504 is a small portion of the Rehabilitation Act, but it prompted the longest takeover of a government building in U.S. history. Why? Put simply, 504 establishes the legal possibility of discrimination against disability – massive and unprecedented.

A hard struggle passed before the law took effect, followed by greater bitter pushback. Judy played an instrumental role in the building takeover, drafting the 504 legislation, and fighting for its implementation. In short, without her, this progress may have perished in the brainstorming phase. To learn more about this event, read the memoir. From the 504 rises the all-important “ADA”. It’s so critical that I consider myself a “Post-ADA” person.

If the acronym means nothing to you, you can hardly be blamed. Despite its importance, the ADA is treated as a mere fact of life now. The Americans with Disabilities Act was signed in 1990 by George H.W. Bush who proclaimed “’Let the shameful wall of exclusion finally come tumbling down’” (171), reflecting a new mentality. Judy describes the ADA as “the strongest, most comprehensive civil rights legislation for disability in the world” (171). This act finally brought the promise of being an equal citizen in the U.S. and maybe elsewhere.

How did such a law come to be? Motivated by 504, people with disabilities agitated for their due justice and civil rights, leading to the ADA. Activists decisively crawled the eighty-three marble steps to the U.S. Capitol, which elevated the struggle’s stature. Judy presents, “Pushing themselves out of their wheelchairs, dropping their crutches to the side, leaving any other mobility assistance behind, they began to climb the steps” (170). Truly, the ADA is where disability rights became a full movement with Judy as more of a careful caretaker. A critic could argue that the ADA only has merit within the U.S. and for a limited group. However, as one example of its worldwide reach, Judy promoted the U.N. convention, itself largely based on the ADA[1], and encouraged accessible renovations to U.S. embassies and foreign government buildings like the Amman city hall.  


The Work Done and To Be Done
Being Heumann, which came out in 2020, pushes us to look forward. For instance, Judy writes, “Because we already have the vehicle to make our society fair, to give everyone a voice, to protect and advance the rights of those who are marginalized, and create the shared institutions that support us all. It’s our democracy” (208). These words demonstrate how advocacy can bring out a better world – through directed action.

For example, under the shadows of a brutal pandemic, activists have pushed for and received some tremendous changes over the last four years. Telehealth became much more widely accessible than before, alleviating risk of infection and physical access concerns. The reauthorization of the Federal Aviation Agency in 2024 carves out improved guardrails for air travelers with disabilities, which has taken a full fifty years. Promising experimental medicines, including novel gene therapies, are receiving record approvals by regulatory bodies across the world for those who wish to take them. Finally, people with disabilities have made themselves better known since the book came out.

Unsurprisingly, despite a plethora of great news, access and accommodations remain deeply challenging globally.  The ADA, Section 504, and the U.N. Convention moved the needle on disability rights but did not resolve all deep-seated tensions. Much work remains for integrating people with disabilities with employment and broader life opportunities. My experiences assure infinite examples. Perhaps you even see this in your own lives.

Instead of wallowing in despair, I want to offer ideas for how you can get involved. These are suggestions about how to relate to barriers many people with disabilities face.

1. Keep an eye out for what may not be accessible. What physical impediments stop people with mobility limitations? When do public resources exclude deaf people by not providing a visual supplementation to verbal information?  How about when instructions are difficult to understand for neurodivergent people? In general, when are people excluded for not matching societal norms of ability? Just a few questions to consider barriers in society.

2. Fight for healthcare that expansively covers the needs of people with disabilities many of whom need access to specialist doctors (cardiologists, neurologists, physical therapists, and endocrinologists to name a few). In the U.S., universal healthcare is desperately needed; however, other countries, like Canada, have universal coverage that may still not cover the needs of people with disabilities. Though universal healthcare provides greater access to necessary medical care, this is not itself sufficient. No matter the country, there is need for healthcare systems to support these populations, instead of rationing their care.

3. Imagine disability justice as a full solidarity movement. Ability coincides with race, gender, sexuality, class, religion, and even geopolitical identity. Often, disability is cordoned off in a special category away from other identities and treated as “solved” by the ADA, requiring no more action. In fact, Judy’s memoir highlights how numerous groups – like the Black Panthers, LGBT+ organizations, and more – collaborate with disability rights activists. These groups may not even be entirely separate to begin with.

Just three instances of this overlap are presented below: 1) My lifestory; 2) disability and reproductive freedom; and 3) the War on Gaza.

I live in the interfaces of identities myself. As a Pakistani-American with muscular dystrophy, I stare down my own journey across disability. Some aspects are implicit, some are not. My class-privileged background also eases my ability to receive necessary care. My cultural associations of community support drive my different approach to disability rights. My view of a person with disability varies based on my snapshot of lived experiences.

Conceptually, disability is often separated from reproductive freedom. Despite how people with disabilities (of all genders) give birth, receive abortions, and seek other forms of reproductive medicine. At an ACLU of Oregon lobby day, I forged this connection and championed reproductive freedoms with state legislators as a disability rights advocate. There’s a few reasons why they are related. Much of reproductive healthcare – involving birth, abortion, egg freezing, and more – relies on medicine that is multi-purpose and used to treat a host of conditions. Furthermore, this process underpins healthcare at large – with attacks on abortion and other care hurting the process of receiving health in general.  Lastly, perhaps most crucially, if facilities cannot be accessed by people with disabilities, they are blocked from their rightful resources.

Ability intersects with geopolitical concerns – even though disability rarely receives explicit notice. No place more dramatically reflects this reality than the recent War on Gaza. Rashid Khalidi’s insightful, incisive 2020 book – The Hundred Years’ War on Palestine – implies pervasive ableism through decades of attempted annihilation. Intense bombardment destroys buildings, sidewalks, roads, medical facilities, universities, and lives. Travel by rubble blocks many Palestinians with mobility limitations, many of whom were rendered this way by violence. Crutches, wheelchairs, oxygen tanks, anesthesia, various other medical supplies, and even food are generally banned from entering Gaza[2] – compounding these brutal obstacles.[3] An example of targeted ableism appeared earlier this year when a man with Down Syndrome named Muhammed Bhar, posing no threat to soldiers, was mercilessly killed.[4] In his final moments, he apparently spoke his first words to gently ask his attacker to stop, showing full humanity.

Looking Ahead
Being Heumann, the memoir Judy Heumann was hesitant to write, reflects her great legacy in shepherding progress towards a brighter future. Despite being known as an instrumental player in essential disability legislation, she devotes few pages to it, instead focusing on her many collaborators. Judy Heumann’s great legacy as an activist comes from her ability to surgically target issues facing people with disabilities and to rally others around solving these problems. This expose further reveals the grand solidarity of the disability justice movement, encompassing all forms of life. 

A plethora of experiences requires a plethora of discussions. We all learn and grow from others. As an activist myself, I found myself humbled by reading this book. In fact, at a town hall a few months ago, my state senator brought up this book in response to my question about how the state legislature is removing barriers for people with disabilities. Learning about this memoir was collaborative for me. Disability activism – and advocacy at large – require us to be fully open to the many contributors around us. My own tributes to disability advocacy pale in comparison to Judy’s; through this revelation, I seek to redouble my own efforts.

As a community, we can look for ways to create a more inclusive world for people in general in line with disability justice’s broad coalition. To achieve this, the world must reduce barriers that limit many people with disabilities. We must start small with what is around us and build up to changing society itself.

Books Consulted:

Heumann, Judith with Kristen Joiner. Being Heumann: An Unrepentant Memoir of a                     Disability Rights Activist. Beacon Press, 2020.

Khalidi, Rashid I. The Hundred Years’ War on Palestine: A History of Settler Colonial                 Conquest and Resistance, 1917-2017. Metropolitan Books, 2020.

---

[1] The Convention was completed in 2006 under President George W. Bush. However, the president decided to pass on signing the U.N. convention because of the ADA. Instead, President Barack Obama, under whom Judy worked, signed the convention in 2009.

[2] https://apnews.com/article/israel-gaza-rafah-aid-us-senators-2bc2a3c5e5f8af8e2d3f0b7242c1a885. Accessed September 17^th, 2024.

[3] https://www.merkley.senate.gov/merkley-gaza-needs-a-massive-increase-in-humanitarian-aid-immediately-opinion/. Accessed September 17^th, 2024.

[4] https://www.bbc.com/news/articles/cz9drj14e0lo. Accessed September 17^th, 2024.