Lyria's brother, Barton, gave the following address on the occassion of Lyria's memorial celebration, 6/16/2012, in Swampscott, Mass.

Fighter. Lyria was often praised for being a “fighter” by those around her. She mostly accepted and liked this label and she also called herself a fighter. She liked clichés. But sometimes she would ask me if it was really true.

Lyria faced a lot of hard challenges in her life, and had to contend with many hospitalizations, surgeries and long periods of rehabilitation, especially in the past seven years. This was such an intense period that it tends to eclipse the four decades that came before. She wondered aloud sometimes if she had been as brave and motivated as she was expected to be. She wanted a lot of approval from me, her big brother, 4 years younger than her. I was often stingy in giving approval. I had a tough-love relationship with Lyria. There had been times in rehab when it took a lot hard words to get her out of bed or out of her wheel chair to do any walking at all.

Lyria had many hard times and she had the opportunity to die many times. There were many times when she could have quit. But she was never persuaded that dying was better than living. The day before she died she told several of us that she wasn't ready to give up yet. Why would that be?

During her last hospitalization and about two weeks before Lyria died, several family members had a consultation with a hospice service and I’m glad we did. We were advised that 1) anybody who is dying knows it, they just know it; 2) that Lyria would almost certainly choose to stop her dialysis treatments if her family would support such a decision and 3) someone from the family - probably me - should have a conversation with Lyria about this as soon as possible and about starting hospice care. That evening Tarso and I went to see her together to tell her that we knew she was dying and that it was okay to stop struggling, to stop being a fighter.

In her hospital room at MGH: Lyria’s blood pressure was very low and it would soon become clear she wasn’t able to engage in a conversation like this. She also did not respond as we expected: Tarso and I confused her. She thought we were telling her she was dying that very moment and she started asking her nurse if she were dying right then and there. She was alarmed and started to imagine she was getting very dizzy. So, it appeared, everyone except my sister knows when they are dying.

Still on task, Tarso and I both told her that it was okay to stop fighting and struggling. She was not in a suitable condition for this important talk. She was actually hearing the opposite of what we were saying. I could tell that she thought we were telling her to be a fighter and triumph once again. She was hearing what she expected from us  - fight! struggle! try harder! That’s what we told her all the time for years and years. I myself found it very difficult to now be telling her the opposite. And it was very discouraging not to be getting through to her.

We backed off that night and tried again over the next two days. This very important conversation wasn’t working. Her doctor, David Steel, tried to discuss the same topic with her but the message seemed to be washing over her. She was too tired to hear. So in consultation with Dr. Steel and Tarso we started making decisions on her behalf. Lyria was going to be sent home for palliative care, ready to transition to hospice as soon as she was ready. We would not remove dialysis as long as Lyria was not in pain. But there could be tough decisions ahead.

It was late in the morning and after several hours I was now alone with Lyria. She was tired. Transportation would arrive soon to take her in a stretcher back to her home in Danvers, to take her to her certain end. It was very hard. We hadn’t had the talk with Lyria that we needed to have. Discouraging. I wanted to engage her.

She loved classic rock and in the past would often watch youtube videos of great bands when she really needed the distraction, when she was in the hospital or in rehab. So as we waited, I tried to interest her in several music videos of Heart and Led Zeppelin but she was fairly unresponsive. The last one I tried was “Stairway to Heaven.” The ambulance guys arrived in the middle of that song and she was tapping her foot while they moved her from her bed to the stretcher so I knew she was listening to it. These transport guys could see she was into the music - so were they - and they started doing everything slower so they wouldn’t need to get going until the song was done. I knew this was going to be her soundtrack.

Several years ago, I recorded her singing along with that song. It was her tribute to her mom’s mom, when she had passed away. She wanted it played at her grandmother’s memorial service. I lost my copy of that recording some time ago and only found it again among Lyria’s belongings a few hours after she died.

So as I waited for her to be taken away at MGH, listening with her to the song, I felt like that was going to be the final goodbye in a way, the most I’d be able to share again with Lyria. She seemed to be declining so fast. It is corny, but at that moment, it became my soundtrack for saying goodbye to Lyria. They took Lyria and I left. I did a lot of my crying that day.

But just as a beautiful song can have an ending you don’t see coming, I didn’t expect the final beautiful coda of Lyria’s life. Although still tired, once she was back home, she regained her faculties enough have that conversation we had been attempting, and to come to terms with the fact that she was dying. For the next week and a half she was uncharacteristically calm. She was able to say goodbye to many people. The staff at her house deserve so much credit for this - we are all so grateful - it is not what we expected. Lyria thanked many and said goodbye because she believed us when we told her she would die soon. But she didn’t choose to do anything to make it happen faster. She didn’t ask to stop dialysis. She wasn’t ready yet. Why?

Under different circumstances it might have been different. First, the palliative care Lyria was receiving at home was doing a good job keeping her comfortable. In the past and in periods of intense pain or fear she had required a lot of persuasion and support to be a fighter and needed a lot of distraction to persevere. Also, Lyria still had a powerful fantasy life, particularly strong when she was younger, full of rock music and movie stars and soap stars and imaginary boyfriends, money won on game shows or the lottery, stardom at karaoke night. This was still worth living for. Was she thinking about next song she would sing next time at karaoke? Getting some stage time was, for Lyria, worth risking her health, really. What else? Why not quite ready yet? Because in reality she was very loved, actively loved, fiercely loved, tough loved and she was enjoying that love and wanted more of it. 

Lyria's younger brother, Tarso Luís, gave the following address on the occassion of Lyria's memorial celebration, 6/16/2012, in Swampscott, Mass.

It seems to me that Lyria’s is the sort of life too seldom celebrated and I feel a certain responsibility to see to it that she gets her due. I’m learning one doesn’t stop being a brother when your sibling dies. I want to offer a few reflections about Lyria and share stories from parts of her life that may not be well known beyond her immediate family. I make no effort to be comprehensive; summarizing her life is not my aim and anyway is beyond my powers.

If we are all of us bundles of contradictions, Lyria was perhaps especially so. I want to explore a few of these for the lessons they may contain about Lyria, about us, about the world.

Lyria would have turned fifty in July, so hers was a short life. Or was it? She lived much longer than most of us could have hoped for given the kidney failure that manifested in her teens and her multiple subsequent brushes with death. Even as the end seemed near for her, no one in the family ruled out the possibility that Lyria would carry on as long as she wanted to, for she had always seemed to will herself through completely impossible situations. Lyria’s health struggles began at a tender age. Few know the full litany of disabilities she surmounted or endured. She was born with a leg twisted outward that had to be corrected with a metal brace. Her palette was malformed and had to be stretched a great width with a special device so that her top teeth would meet her bottom ones properly. Our parents learned that Lyria – who was as verbal a kid as she was an adult and spoke lovely Portuguese – couldn’t manage two languages. So when we came to the U.S., she abandoned Portuguese in order to learn English. As a child Lyria had tantrums and was prone to crippling bouts of anxiety. Bitten by a dog immediately after having been assured that most dogs don’t bite, Lyria couldn’t go outside without having a panic attack. In 1970s New York, dogs were somehow everywhere and seeing one – even across four lanes of traffic – would set Lyria climbing her parent like a tree. At a neurological workup at a New York hospital doctors got a strange kidney function reading, leading to an x-ray and a diagnosis at seven or so years old that she had olegomegalonephronia and that her kidneys would fail when she reached puberty, which they did. Around 9 years old, hearing loss was detected. Her inner ear bones were fusing. She ended up with stainless steel plates in both ears. And that’s not nearly the complete litany. Lyria’s short life was in fact long – a marathon of hurdles. Upon completing thirty years of hemodialysis treatment for kidney failure, Lyria told a local newspaper, “My main motto is that life is worth fighting for, not taking for granted. Don't give up.”

Another seeming contradiction: She was the first-born of us siblings – our elder – yet even more of an eternal kid than the rest of us. (And may I say there’s been some real competition.) Her learning disabilities contributed to the persistence of seemingly youthful – even frivolous – obsessions. One early memory is of a trip West to see the California redwoods. We’d never been to California before and Lyria was vigilant the whole time, certain a David Cassidy sighting was in the offing. She never grew out that star-struck crush-on-pop-hero phase. Mere months before her death she was plotting ways to arrange a meeting with Brett Michaels (front man for the metal band Poison) via his Facebook fan page. It was a shame he’d have to leave his wife after falling for her. If truth be told, she was a dedicated stalker of her star crushes – just not a very effective or threatening one. She managed to defeat the timer on a computer we gave her that was meant to keep her from staying up all night. But she couldn’t penetrate the multiple layers of security protecting Oprah. Sometime in her thirties I took Lyria to a movie of her choosing – a summer teen romance with heartthrob du jour. As he leaned in to plant the first close-up kiss on the lips of some lucky young lady, Lyria shouted into the silent theater, “I want that to be me someday!” 

But if Lyria was kidlike in some ways, her impaired judgment and rudimentary understanding of many things the rest of us take for granted were no shield from the realities of her misfortune. She was not blissfully ignorant. She had mature longings. Unrequited love was a theme throughout her life – a blow in its own way perhaps as severe as her kidney failure. She knew she had been dealt a bad hand, often compared her life opportunities to those of her siblings, and carried – even nurtured – an anger that often erupted into rage at the unfairness of it all. The unjust limitations on her life seemed to her to be imposed by outside hands. In Lyria’s cosmology, someone was always responsible for her problems. Even accidents were never blameless. This led to countless situations both comic and painful but it was hard to fault her for an anger that could be simultaneously immature and knowing.

Another contradiction: In a family with its share of both charmers and curmudgeons Lyria was a champion in both events – her ability to make fast friends of absolute strangers is as legendary as her verbal tirades at loved ones – or anyone – she chose to assign blame for any of her many difficulties. Through much of her life Lyria kept her finger on the button and wasn’t shy about using the nuclear option. If in a foul mood, no kindness would go unpunished. I couldn’t count the number of times she hung the phone up on me, but our mother was the object of Lyria’s deepest love and unrestrained fury. She was a perennial, wrathful, teenage daughter. For decades. Oh, and nurses. Through Lyria, I’ve met many. A profession loaded with some of the most competent and compassionate people you can imagine, to whom Lyria could sometimes behave in unspeakable ways. Yet, somehow, she endeared herself to a large community of friends and caregivers who became devoted to her and part of her extended family. Nurses would recognize Lyria from previous hospitalizations. Even those assigned to other patients would stop in to say, “Hello” and encourage her to stay strong in the face of her latest health crisis. She was both formidable and vulnerable – an irresistible combination. She had an impressive vocabulary, charming smile, and a quick retort. Our stepfather, Ben, once told her, “Lyria, you have beautiful eyes.” She shot back, “What about the rest of me?!” She was like jawbreaker candy – sweetly addictive but rock hard and could crack your tooth. 

Another contradiction: Lyria’s anger, which like a tornado could do severe and indiscriminate damage to the community around her was also a survival mechanism. Her anger seemed to be the source of so much of the fighting spirit that kept Lyria alive through a transplant gone wrong, life-threatening infections, a hip replacement, cardiac arrest, and other moments of pain and near-despair. She was damned if someone or something else was going to tell her when she was done.

Another contradiction: She was a city girl who grew up on TV and was addicted to soap operas but in some ways was at heart a nature girl. She would have loved this view. When she was younger Lyria would emulate the dramatic language – and even the accents – of soap stars as she wrangled with family members or house staff, lending already challenging situations several additional layers of unnecessary intrigue. She kept her housemates awake listening to late night TV and we had countless discussions about how the purpose of advertising is to sell you things you don’t need. To little effect. Raise your hand if she ever asked you to help her get a sleep number bed. But she had a special place in her heart for the countryside. Lyria loved – and often recounted her trips with our mother to Killington VT, Lummi Island and Stehekin WA – where she proved herself an expert bear spotter and didn't even get anxious about seeing that bear. Her favorite trip of all time was to Hawaii, where she got to view the aquatic world from the window of a submarine. When I asked her recently about her love of rural places she explained, “Ever since I watched The Waltons I've always loved the countryside.” Her life was often full of crazy drama and whether the simplicity of rural places was real or only imagined, they had a calming affect on Lyria. We’ll be scattering her ashes oceanside on Lummi Island, with the seals and the eagles. We think she’d like that.

Another contradiction: Lyria could be pretty self-obsessed and was better than most of us at bringing any conversation back around to herself. But she was curious about the world. She and I had many extensive talks about politics and society.  She had a visceral reaction to evidence of discrimination and was outraged about the sometimes-explicit racism that accompanied critiques of President Obama. We talked about how the destruction of New Orleans was a man-made disaster.  She wrestled with the question of same-sex unions and evolved much faster than the President to a position of embracing absolute equality. Although a little nervous about the idea, she wanted me to take her to gay pride march. She was a woman with definite political views who made a point of voting even when it was extremely inconvenient to do so.

Another contradiction: In a culture that celebrates the individual, we naturally recognize Lyria’s will to live and fighting spirit as essential qualities of her exceptional life and explanation for her endurance. Yet none of us is solely responsible for our accomplishments and Lyria’s story includes important lessons about community – family, friends, but also our larger society. As she got older, Lyria’s needs exceeded the family’s ability to meet them. Her rebelliousness against her renal diet was life threatening. Our mother – at this point single and raising three kids – set about compelling the state to meet its promise of providing for those unable to provide for themselves. We’ve all of us learned a lot about ourselves, and also about how the world works through trying to do right by Lyria. Myra compelled the Brookline School District to send Lyria to a special needs program at Riverview School on Cape Cod, got services from what was then the Massachusetts Department of Mental Retardation, and on and on. Along the way our mother received critical help from dedicated service providers. For the most part, Lyria received extraordinary care from an incredibly competent and dedicated team of therapists, doctors, and nurses. She was the beneficiary of a host of cutting-edge medical technologies and interventions. She lived her last years in exceptional housing facilities funded by the state and run by a private non-profit called Bridegwell. Over the decades there were glitches, and errors, and drama, but mostly Lyria was the fortunate beneficiary of the badly frayed social safety net that dates back to Franklin Roosevelt’s New Deal.  Her story illustrates how that safety net has worked – at least for some. Our family didn’t go bankrupt trying to pay for Lyria’s medical care. No one had to quit her job to stay home. For this, we are grateful and indebted to the society of which we are a part. That’s not to say it was easy. Our mother, and Lyria’s principal champion, brought uncommon dedication and tenacity to her cause and in so doing set a very high bar for the rest of the family. But we’re acutely aware that those with less privilege – because of their educational or class background, because of racial discrimination, or for lack of relevant social and professional networks have it much harder and are far more likely to be excluded from the benefits Lyria enjoyed. Lyria was herself a critic of social inequality and participated in a demonstration on the state house lawn to prevent cuts to social services. May we follow Lyria’s example by committing ourselves to fighting for equal access to the societal benefits she received.

I want to end by returning to my contradictory sibling relationship with Lyria. One of my earliest memories involving Lyria is of being entrusted with the secret of her learning disability. I was maybe nine years old when my older brother and I were charged by our parents with using that secret knowledge to develop greater compassion for our older sister. We were warned not to share that information casually because others might use it against her; we were responsible to protect her. It was the beginning of a new kind of relationship with our sister that defied the hierarchy of birth order. Although she was five years my senior, in some respects my relationship with Lyria developed into something more like that of an older brother, uncle, and at times even a parent.

But in her final days, that relationship changed again. My sister passed following an extraordinary couple of weeks during which she seemed to make peace with her situation. "My body's not letting me fight any more," she said. The anger was gone. She focused on reaching out to loved ones to offer her thanks for the joy they had brought her. She had a wonderful time visiting – in person and on the phone – with long-lost childhood friends, family members, and caregivers alike. When her time came, on the morning of a beautiful May day, she went without any evident pain or fear. It was as if her heart finally stopped because she had dispensed so much love in such concentrated doses. In the end, she was my teacher, my big sister, demonstrating exemplary maturity and generosity. When my own time comes, I know I could do no better than to follow her example.

I thank you all for listening and for being a loving part of her life.