What do you want to create? Where do you share this with others, and how do you want them to feel? As a brand designer, I ask a lot of questions and practice empathy to understand from people their personalities and motivations behind the why of what they do to help them express themselves, sometimes transforming ugly moments into unique ones, or turning something ordinary into something memorable. To help the face behind a brand express themselves through beautiful experiences. But what happens when the experience you've been asked to design is death and the face behind that brand is your very own mother?
Apa yang mau Anda ciptakan? Di mana Anda akan membagikannya, dan apa yang Anda mau mereka rasakan? Sebagai seorang desainer merk, Saya banyak bertanya dan mempraktikkan empati untuk mengerti dari orang lain kepribadian mereka dan motivasi di balik apa yang mereka lakukan untuk membantu mereka mengekspresikan diri mereka terkadang mengubah momen-momen buruk menjadi unik atau mengubah sesuatu yang biasa saja menjadi mengesankan Untuk membantu wajah di balik sebuah merk mengekspresikan diri mereka melalui pengalaman yang indah Tetapi apa yang terjadi saat hal yang harus Anda desain adalah kematian? dan wajah di balik merk itu adalah ibu Anda sendiri?
This was the design challenge I was faced with last year when my mom was diagnosed with stage four cancer, and she asked us to support her end of life. For 12 years, she was in remission from a previous cancer. She had a tumor behind her ear, and this time it came back as bone cancer in one of her vertebrae. What we all thought was back pain from arthritis revealed itself to be the worst. It was the beginning of the end of her life.
Inilah tantangan yang saya dapat tahun lalu Saat ibu saya didiagnosis mengidap kanker stadium empat, dan dia meminta kami membantu kematiannya. Dia mendapat remisi 12 tahun dari kanker sebelumnya. Dia punya tumor di belakang telinganya, dan kali ini, tumornya kembali menjadi kanker di tulang belakangnya. Yang kami kira hanyalah sakit karena radang sendi ternyata adalah hal yang paling buruk. Itulah awal dari akhir kehidupannya.
But first, let me tell you about my mom. She was born in China in 1948. She and her twin brother grew up in a large family. Her mother was the second wife to her father and second wives and their children weren't viewed in the most positive light because it was just the cultural norm of the time. And growing up in communist China in the 1950s as a daughter and not a son meant that my mom was not the pride of the family. And she knew she wanted better and needed to get out. So she got tough, developed thick skin and decided to fight for her life. She fled China to Hong Kong, and when she was 22 she married my dad and they made their life in the United States. And she continued to fight. She was persistent, fearless. She never took no for an answer. We always said that she could charm the skin off of a snake or just whip it into a straight line.
Tetapi pertama, saya akan bercerita tentang ibu saya. Dia dilahirkan di Tiongkok pada tahun 1948. Dia dan saudara lelaki kembarnya tumbuh di keluarga besar. Ibunya adalah istri kedua dari ayahnya dan anak mereka tidak dipandang baik oleh orang karena begitulah normanya pada saat itu. Dan tumbuh di Tiongkok pada tahun 1950 sebagai anak perempuan berarti ibu saya bukanlah kebanggaan keluarganya. Dan dia tahu dia mau yang lebih baik dan harus keluar. Jadi dia menjadi kuat, Dia bertebal muka dan berjuang untuk hidupnya. Dia kabur dari Tiongkok ke Hong Kong, dan di umur 22 dia menikah dengan ayah saya dan membangun hidup mereka di Amerika Serikat. Dan dia terus berjuang. Dia teguh, tanpa rasa takut. Dia tidak pernah menerima kata “tidak”. Kami selalu berkata bahwa dia bisa membuat ular melepas kulitnya atau membuatnya berbaris lurus.
(Laughter)
(Tertawaan)
Growing up with our mom, she fought for my sisters and I to get into the best classes in school, even though they were full. She fought for a prime real estate location for my dad so he could start his own business. And as a teenager with me, we fought a lot over bad boyfriends, body piercings, punk music. It's always true when they say mom's always right.
Tumbuh besar dengan ibu kami, dia berjuang agar anak-anaknya bisa masuk ke kelas terbaik di sekolah, meskipun kelasnya sudah penuh. Dia berjuang mendapatkan lokasi rumah bagus untuk ayah saya agar dia bisa memulai bisnisnya. Dan saat saya remaja, kami bertengkar tentang pacar yang buruk, tindikan telinga, musik punk. Memang benar kalau orang bilang bahwa ibu selalu benar.
The cancer she had in 2004 gave her a preview into her death. At that time, she had endured a lot of radiation and treatments. A lot of radiation involved the side of her brain, and she never forgot how the mental and physical side effects made her feel. Overcoming that cancer was a source of pride for her, as well as traveling the world with my dad, watching all of her daughters get married and seeing her grandbabies grow up into teenagers. Her world was filled with beautiful experiences and a lot of color. But she never talked about the shades of gray. She never talked about how that preview into her death gave her 12 years to silently prepare and brace herself for the end. This time, when we gathered around her in the hospital, she had an announcement to make. She said that she did not want to do any treatments, no surgery. She was ready to go. She looked at us point blank and said that. She did not want to live life trapped to a bed, unable to feed herself, unable to use the bathroom for herself. She did not want to become a vegetable. And she wanted to exit this world knowing exactly who she was. She was adamant.
Kanker yang dia dapat di tahun 2004 memberikan bayangan tentang kematiannya. Pada waktu itu, dia sudah melewati banyak perawatan dan radiasi. Banyak radiasi yang mengenai sisi samping otaknya. dan dia tak pernah lupa bagaimana perasaan dia akibat efek samping mental dan fisiknya. Mengalahkan kanker itu menjadi kebanggaan baginya, dan juga keliling dunia dengan ayah saya, melihat semua anak perempuannya menikah dan melihat cucu-cucunya tumbuh menjadi remaja. Dunianya dipenuhi pengalaman indah yang sangat berwarna. Tetapi dia tidak pernah membahas sisi buruk lainnya. Dia tidak pernah bicara tentang bagaimana kanker itu memberinya 12 tahun untuk mempersiapkan kematiannya. Kali ini, saat kami berkumpul di rumah sakit Dia membuat sebuah pengumuman. Dia bilang dia tidak ingin menjalani perawatan atau operasi apa pun. Dia siap untuk pergi. Dia menatap mata kami dan mengatakannya. Dia tidak ingin hidup di atas kasur, tidak bisa menyuapi diri sendiri, tidak bisa pergi ke toilet sendiri. Dia tidak ingin menjadi tak berdaya. Dan dia mau pergi dari dunia ini dengan mengingat siapa dirinya. Dia bersikeras.
In the state of Washington where my mom lived, Death With Dignity has been in effect since 2009. And for those of you who aren't familiar, Death With Dignity is legislation that empowers individuals to decide for themselves to move on when science has confirmed the end is near. It gives individuals the legal right to decide and act for themselves to move on when faced with a terminal illness. Death With Dignity is legal in five out of 50 US states, and is one of many end-of-life care options available. It was this particular end-of-life care option that my mom wanted. And she asked us to support her through this. We were devastated and none of us knew what to say. So she spoke first. "I want a private ceremony at home, immediate family only. This is the outfit that I want to wear and don't spend any money on flowers, but if you do, I like yellow ones."
Di negara bagian Washington tempat ibu saya tinggal, Kematian Dengan Kehormatan sudah diterapkan sejak 2009. Dan bagi yang belum tahu sebelumnya, itu adalah undang-undang yang memberi hak bagi orang-orang untuk memilih kapan mereka akan pergi saat akhir hidup mereka sudah dipastikan secara medis. Peraturannya memberi semua orang hak legal untuk menentukan dan bertindak sendiri saat menghadapi penyakit mematikan. Undang-undang itu telah diterapkan di 5 dari 50 negara bagian AS dan merupakan salah satu perawatan akhir hidup yang tersedia Perawatan inilah yang dipilih ibu saya. Dan dia meminta kami untuk mendukungnya menjalani ini. Kami merasa sedih dan tidak tahu harus berkata apa. Jadi dia berbicara duluan. “Ibu mau upacara pribadi di rumah, hanya untuk keluarga dekat. Ini baju yang ibu mau pakai dan jangan membeli bunga, Tetapi kalau kamu mau, ibu suka yang berwarna kuning.”
(Laughter)
(Tertawaan)
"I want my ashes scattered on Mount Rainier, and afterwards for you all to have a dinner party, you know, nothing fancy, casual, maybe with some Southern-style food and some music." She knew exactly what she wanted. She wanted a celebration.
“Ibu mau abu ibu ditebarkan di Gunung Rainier, dan setelah itu kalian semua makan malam bersama, ya, yang sederhana saja, mungkin dengan makanan khas Selatan sambil mendengar musik.” Ibu saya tahu apa yang dia mau Dia mau sebuah perayaan.
After a lot of tears and listening, hospice came in to consult with us on next steps. And we learned that we needed signatures from two doctors in order to proceed with Death With Dignity. Her primary care physician said he would sign, but only if her oncologist signed off first. Her oncologist was shocked. He was so surprised that she was ready to make such a swift decision. He said, "You know, like, it's stage four cancer, but you could live for another six months, maybe even longer. Don't you want to have more time to live? Don't you want to enjoy life for as long as you can?" My mom said she wanted Death With Dignity. "This is my time. This is what I want." He told her no. We were really confused. Her cancer was confirmed, hospice just came in and walked us through the process. As a doctor and an educated man of science, he is trained to problem-solve diseases. His expertise is to find solutions for illnesses, not to relate to my mom's personal view on life. We needed to understand where he was coming from. He was honest and said, "Look, I'm new to Washington. I just transferred here from California where this law was recently made legal. I have never experienced this before. I need time to think about it. No, I won't sign." He looked at my sisters and I to back him up. And we looked at our mom and she was overcome with disappointment and burst into tears. This was a woman who never took no for an answer. And after 12 years of preparing for her end, she found herself fighting again. She was fighting for her life to end, for her right to die.
Setelah banyak air mata dan mendengar, Pihak rumah sakit menghubungi kami tentang langkah selanjutnya. Dan kami mendengar kalau kami butuh tanda tangan dari dua orang dokter untuk menjalani program Kematian Dengan Kehormatan. Dokter umum ibu saya setuju untuk menandatanganinya tetapi hanya jika onkolognya menandatanginya duluan. Onkolog ibu saya terkejut. Dia tidak menyangka ibu saya siap mengambil keputusan itu dengan cepat. Dia bilang, “Ini memang kanker stadium empat, tetapi Anda bisa hidup enam bulan lagi, atau mungkin lebih lama. Apa Anda tidak mau hidup lebih lama lagi? Apa Anda tidak mau menikmati hidup selama mungkin?” Ibu saya berkata tidak. “Ini sudah waktu saya. Inilah yang saya mau.” Onkolognya menolak. Kami sangat kebingungan. Kanker ibu saya sudah dikonfirmasi, Pihak rumah sakit telah datang dan menjelaskan prosesnya kepada kami. Sebagai seorang dokter dan orang terpelajar dia terlatih untuk menangani penyakit. Keahliannya adalah menemukan solusi untuk penyakit, bukan untuk mencampuri pandangan hidup ibu saya. Kami mau mencari tahu apa alasan dokternya. Dia jujur dan berkata, “Saya baru pindah ke Washington. Saya pindah dari California di mana hukum ini baru diterapkan. Saya belum pernah mengalami ini. Saya perlu waktu untuk berpikir. Tidak, saya menolak.” Dokternya menatap saya dan saudara saya untuk mendukung dia. Dan kami melihat ibu kami dan dia merasa sangat kecewa dan langsung menangis. Ibu saya adalah wanita yang tidak pernah menerima kata “tidak”. Dan setelah 12 tahun mempersiapkan kematiannya, dia harus berjuang lagi. Dia berjuang agar hidupnya berakhir, untuk hak dia untuk meninggal
In hospice and palliative care, there are three main focus areas for support. Comfort, spirituality and peace. It's a testament to our society that this level of care is available, ranging from pragmatic to natural and holistic, if you can afford it. As a family, we decided to care for our mom at home. And in order to create a comfortable space for her, we needed to get creative.
Di perawatan akhir dan perawatan paliatif, ada tiga hal utama yang menjadi fokus perawatan. Kenyamanan, spiritualitas dan ketenangan. Ini adalah bukti untuk masyarakat kita bahwa perawatan seperti ini tersedia, Mulai dari yang pragmatis, sampai natural dan holistik, kalau Anda bisa membelinya. Sebagai keluarga, kami memutuskan untuk merawat ibu kami di rumah. Dan untuk menciptakan lingkungan yang nyaman baginya kami harus kreatif.
In the initial stages of her diagnosis, she was mobile with the help of a walker, even though she was frail. In order to get blood circulation flowing through her legs, we needed to get creative with her exercises. We decided to have fun. So we would see how many Beatles songs it would take for her to walk around the kitchen island, X amount of times, all of us singing along to "Love Me Do" and "Let It Be." We watched YouTube videos to learn how to give her haircuts and the house didn't have a shower on the main floor, so on the weekends, we would sneak our mom into my sister's office and use the handicap accessible shower. This deluge of hot steaming water, my mom's body felt so amazing to her. It was one of the last little luxuries that she wished for compared to the sponge baths that we gave her. A lot of her time was spent resting in bed and we would watch documentaries together and classic Warren Beatty movies. Sometimes she'd ask me for a mood board of beautiful images of Mount Rainier, so she could look forward to where ashes would rest.
Di tahap-tahap awal diagnosisnya, ibu saya berjalan dengan alat bantu jalan, meskipun dia sudah lemah. Untuk meningkatkan sirkulasi darah di kakinya, kami harus kreatif dengan olahraganya. Kami memilih untuk bersenang-senang. Jadi kami melihat berapa banyak lagu Beatles yang dibutuhkan untuk dia berjalan memutari dapur sekian kali, sembari kami menyanyikan lagu “Love Me Do” dan “Let It Be.” Kami menonton video YouTube untuk belajar cara memotong rambutnya dan tidak ada kamar mandi di lantai dasar rumah kami, jadi di akhir pekan, kami diam-diam membawa ibu kami ke kantor saudara perempuan saya dan memakai kamar mandi untuk penyandang ketunaan. Kenikmatan air panasnya membuat ibu saya merasa sangat senang. Itu salah satu kemewahan kecil terakhir yang dia inginkan dibandingkan mandi dengan spons seperti biasanya. Dia menghabiskan banyak waktunya di kasur jadi kami menonton film dokumenter bersama-sama dan film-film klasik Waren Beatty. Terkadang dia meminta papan berisi gambar cantik Gunung Rainier supaya dia bisa melihat di mana abunya akan diletakkan.
Once a month she would see her oncologist for status updates, and it was very clear from test results that her cancer was growing. Every time she'd plead with him to have her Death With Dignity wish fulfilled, and he'd say no, and she'd go home disappointed. At this point, she was in a chest brace and a wheelchair because her bones could no longer support her.
Setiap bulan dia akan menghubungi onkolognya untuk berita terbaru, dan hasil tesnya jelas menunjukkan bahwa kankernya semakin parah. Setiap kali dia memohon untuk permintaan kematiannnya dikabulkan onkolognya akan menolak, dan dia akan pulang dengan rasa kecewa. Di titik ini, dia sudah memakai alat penyangga dada dan kursi roda karena tulangnya sudah tidak bisa menopang tubuhnya.
It’s easy for us to think of design as aesthetics or creating visuals. Design is also a tool for communication, a combination of creativity and empathy. Earlier, I referred to my mom's death as a design challenge, which I know sounds strange and off-putting. It's a challenge because for obvious reasons, but it involved design because it required us to talk about it, to talk about it with her doctors and hospice and with our families to make decisions. By having the conversation, it allowed us to come together to grasp what was happening, so we could have a shared language with a common goal for understanding.
Mudah bagi kita untuk menganggap desain sebagai keindahan atau menciptakan gambaran. Desain juga merupakan alat komunikasi. Kombinasi dari kreativitas dan empati. Di awal tadi, saya berkata bahwa kematian ibu saya adalah tantangan desain, dan saya tahu sekilas terdengar aneh. Itu adalah tantangan karena alasan yang jelas, Tetapi itu adalah desain karena kita harus membicarakannya, berdiskusi dengan para dokter dan pihak rumah sakit dan keluarga kami untuk mengambil keputusan. Dengan berbicara, kami dapat berkumpul dan memahami apa yang sedang terjadi, agar kami bisa saling memahami maksud satu sama lain.
One night, when I was sitting next to my mom, I was caressing her arm, and I noticed that the texture of her skin was unusually dry. And the color of her flesh was dull. I had been so focused on executing her end-of-life wishes that I realized, I didn't know what the end of her life felt like. I didn't know what she was going through because I just accepted it. So I asked her, "What does it feel like?" "What does what feel like?" "Cancer. What does your cancer feel like?" "Fire," she said. "My bones are on fire and everywhere under my skin is burning. And every time I move, it just makes it worse. My whole body is on fire." After a moment, she said, "Are you mad at me?" "No. Why would I be mad at you?" "For wanting to move on, for wanting to go to heaven, because it's my time?" I looked her in the eye and I said, "I'm really proud of you. I think you're brave. I think you're a designer like me." She perked up. She was like, "Oh, really? You think I'm a designer?" "Yes. You're creating the experience that you want to have. You're designing how you say goodbye." She took my hand and said, "You understand."
Pada satu malam, saat saya sedang duduk di sebelah ibu saya, saya mengelus tangannya, dan saya sadar tekstur kulitnya lebih kering dari biasanya. Dan warna dagingnya kusam. Saya sangat terfokus untuk mengabulkan permintaan terakhirnya sampai saya sadar, saya tak tahu bagaimana rasanya bagi dia. Saya tidak tahu apa yang dia rasakan karena saya hanya menerimanya. Jadi saya bertanya, “Bagaimana rasanya bu?” “Apanya yang bagaimana?” “Kanker. Bagaimana rasanya kanker ibu?” “Panas,” kata ibu saya “Tulang ibu terbakar dan semuanya di bawah kulit ibu terbakar. Dan setiap ibu bergerak, sakitnya semakin parah. Sekujur tubuh ibu seperti terbakar.” Setelah beberapa saat, ibu saya berkata, “Kamu marah ya sama ibu?” “Tidak. Untuk apa aku marah sama ibu?” “Karena ibu mau pergi, karena ibu mau ke surga, karena sudah waktu ibu?” Saya menatap matanya dan berkata, “Aku sangat bangga sama ibu. Menurutku ibu pemberani. Menurutku ibu juga desainer seperti aku.” Dia tersenyum. Ibu saya bilang, “Masa? Menurut kamu ibu juga desainer?” “Iya. Ibu menciptakan pengalaman yang ibu mau sendiri. Ibu mendesain cara ibu pergi sendiri.” Dia memegang tangan saya dan berkata, “Kamu mengerti.”
The next visit to her oncologist was her last one. What started as a small cluster in one vertebrae expanded throughout her spine and pushed its way forward into her sternum and her rib cage. All within four months. This time there was no begging. He said, "The cancer is growing really fast." She looked at him in the eye and said, "I know." Two days later, she got her two signatures and signed legal documents and prescription to proceed with Death With Dignity. The fight was over and she won. It was actually one of the happiest days of her life. I want to be clear and say that I don't think it was wrong of the oncologist to hesitate on Death With Dignity. It was his responsibility to have a conversation with us, to guide us in understanding and needing us to be curious about all medical treatments that were available until it was very clear her illness was terminal. And I completely respect him for that. It was also our responsibility to have a conversation with him, to guide him in understanding our mom's wishes for her end of life. He needed to be curious about that alternative as well.
Kali berikutnya dia pergi ke onkolognya adalah kali terakhir. Tumor yang awalnya hanya ada sedikit di salah satu tulang belakangnya menyebar ke seluruh tulang belakangnya dan menembus tulang dada dan rusuknya. Semuanya terjadi dalam empat bulan. Kali ini ia sudah tidak memohon. Dokternya berkata, “Kankernya tumbuh dengan cepat.” Ibu saya menatap matanya dan berkata, “Saya tahu.” Dua hari kemudian, kedua dokternya akhirnya menandatangani dokumennya dan resep obat untuk melanjutkan programnya. Perjuangannya telah selesai dan ibu saya menang. Sebenarnya itu salah satu hari terbaik dalam hidup dia. Saya mau menjelaskan dulu bahwa menurut saya onkolognya tidak salah karena ragu dengan program ini. Kewajiban dia memang untuk berdiskusi dengan kami, untuk membantu pemahaman kami dan agar kami tahu tentang semua jenis perawatan yang tersedia sampai kami tahu pasti bahwa ibu kami sudah tak tertolong. Dan saya menghormati keputusan dia. Kami juga memiliki kewajiban untuk berdiskusi dengannya, dan membantu dia memahami keinginan ibu kami untuk akhir hidupnya. Dia juga perlu memahami solusi alternatif itu.
When it came time to fill the prescription, we learned there were two options. The first was a liquid form. It's immediate effect varied upon body type and could take anywhere from two hours to two days to go into effect. We were also informed that it can burn the throat going down and patients have a hard time swallowing it because sometimes they have gag reflexes and it's hard for family members to watch. The cost of that medicine was 400 dollars. The second option was a pill. It's effect much faster, much easier for patients to swallow. The cost of this was 4,000 dollars. Neither were covered by insurance. Our health care system policies and regulations are intended to protect and support us. What patient scenarios and experiences are yet to be designed, what systems need to be revisited? Because at this moment, there was a lot here that could use a redesign. We were so close to bringing her peace. Her dying was complicated enough. How difficult does the system need to be in order to give a patient a peaceful death? The price-tag difference was eye-popping for sure, but it wasn't our decision to make, this was our mom's call. She said, "That's crazy. Are you kidding me? I'll take the 400-dollar one, I'm leaving anyway."
Saat kami sudah harus memilih obat yang akan dipakai, Kami mendapat dua pilihan. Yang pertama adalah obat cair. Efeknya berbeda-beda untuk setiap orang dan butuh waktu antara dua jam sampai dua hari untuk obatnya bekerja. Kami juga diberi tahu bahwa obatnya dapat membuat tenggorokan terasa terbakar dan pasien akan sulit menelannya karena akan terasa seperti mau muntah dan anggota keluarga akan sulit untuk melihatnya. Harga obatnya 400 dolar. Pilihan kedua adalah pil. Efeknya lebih cepat, dan lebih mudah ditelan oleh pasien. Harga pil ini 4,000 dolar. Keduanya tidak ditanggung asuransi. Peraturan dan ketentuan sistem kesehatan kita dibuat untuk melindungi kita. Skenario pasien seperti apa lagi yang belum didesain, sistem apa yang harus dikaji ulang? Karena di titik ini, ada banyak hal yang dapat diubah. Kami sudah hampir memberinya ketenangan. Kematiannya sudah cukup rumit. Harus seberapa sulitkah sistemnya agar pasien baru dapat meninggal dengan tenang? Perbedaan harganya memang mengejutkan, tetapi keputusannya ada di tangan ibu kami. Dia bilang, “Ini gila. Apa kalian bercanda? Saya akan ambil yang 400 dolar. Lagipula saya akan pergi juga.”
(Laughter)
(Tertawaan)
The night before her death, we had a dinner party at her house at her request. We made a beautiful feast of roast chicken, colorful salad, strawberry shortcake, sparkling wine. We made a playlist of her favorite tunes. It was a mix of the Bee Gees, Dusty Springfield and Elvis. We told stories, we laughed, she gave a toast. She was so happy, she was glowing the whole night. The morning of her last day, an end-of-life care assistant came to the house to help us through the process. As preparations were underway, I kept stealing glances at her to see how she was doing. Every time I saw her, her eyes were bright and her mouth was smiling and she just kept giving me a thumbs up because she wanted us to feel brave.
Di malam sebelum dia pergi, Kami mengadakan pesta makan malam di rumahnya sesuai permintaannya. Kami membuat pesta yang indah dengan ayam panggang, salad warna-warni, kue stroberi, anggur soda. Kami membuat daftar lagu-lagu favoritnya. Daftarnya berisi lagu Bee Gees, Dusty Springfield dan Elvis. Kami bercerita, tertawa, ibu kami bersulang. Dia sangat bahagia, wajahnya berseri-seri sepanjang malam. Di pagi hari terakhirnya, seorang asisten perawatan akhir datang ke rumah kami untuk membantu kami dengan prosesnya. Selagi prosedurnya disiapkan, Saya diam-diam melihat ibu saya untuk melihat kondisinya. Setiap saya melihatnya, matanya berseri-seri dan mulutnya tersenyum dan dia terus memberi jempolnya karena dia mau kami merasa berani.
We learned there were three medications in total. The first was to slow down her heart rate. The second was for anti-nausea and the third was her final medication. The assistant, before he handed her the medication, said that by law, she had to declare out loud that it was her intention to go to sleep and to not wake up. By law, none of us could help her hold the cup or help her drink it, she needed to do it for herself. And he warned her that it could burn and to take her time. My mom took the cup with two hands and pounded it back like a shot of whiskey.
Kami diberitahu bahwa ada tiga obat yang harus diminum. Obat pertama berfungsi untuk memperlambat detak jantungnya. Obat kedua adalah obat anti-mual dan obat ketiga adalah obat terakhir. Asistennya, sebelum menyerahkan obatnya, berkata kalau sesuai hukum, ibu saya harus menyatakan bahwa ini adalah keputusan dia untuk tidur selamanya. Sesuai hukum, kami tidak boleh membantu ibu kami meminum obatnya, dia harus melakukannya sendiri. Asistennya menyuruh ibu saya pelan-pelan karena tenggorokannya akan sakit. Ibu saya mengangkat cangkirnya dengan dua tangan dan meneguknya seperti secangkir wiski.
(Laughter)
(Tertawaan)
She looked at my dad and smiled, closed her eyes. And in 45 minutes she was gone.
Dia menatap ayah kami dan tersenyum, lalu menutup matanya. Dan 45 menit kemudian dia sudah pergi.
I know the experience that we had is not common. For many people, they don't get the chance to say goodbye the way that we did. For some, death is full of uncertainty and can often be a waiting game. Watching our mom deteriorate wasn't easy and neither was caring for her. There were many parts of the experience that were not beautiful. That involved the expected tubes, needles, bed pans and fluorescent lights. Caring for her was possible because my sister Nancy took on the difficulty of moving mom into her house, and my sister Jenny is a nurse and managed her pain until the very end. In an odd way, there was a lot of comfort because we were figuring out this whole mess together. I can't imagine what it would have been like if my mom lived in a state where this was not legal. How long and how painful would it have been? This year, 30 US states are considering Death With Dignity. And what that means for actual legislation is unknown, but what is clear is that there are a lot more people who want to have a say. All over the world, there are many cultures and families who practice their own rituals of death. These rituals are expressions based on their unique situations and environments.
Saya tahu pengalaman kita berbeda. Banyak orang yang tidak punya kesempatan untuk berpamitan seperti kami. Bagi beberapa orang, kematian itu tidak pasti dan bisa seperti penantian. Melihat kondisi ibu kami memburuk tidaklah mudah dan merawatnya juga tidak mudah. Banyak hal dari pengalaman ini yang tidak indah. Yang berkaitan dengan tabung, jarum, pispot dan lampu pendar. Kami berhasil merawatnya karena saudara saya Nancy mengambil tugas berat memindahkan ibu kami ke rumahnya, dan saudara saya Jenny adalah perawat yang membantu rasa sakitnya sampai akhir. Ada banyak kenyamanan yang aneh karena kami mencari solusi semua ini bersama-sama. Saya tidak bisa membayangkan bagaimana jika Ibu saya tinggal di tempat di mana hukum ini tidak ada. Akan seberapa lama dia menderita? Tahun ini, 30 negara bagian AS mempertimbangkan hukum ini. Dan artinya untuk hukum masih tidak jelas. Tetapi yang jelas adalah banyak orang yang tak akan punya suara. Di seluruh dunia, ada banyak budaya dan keluarga yang memiliki ritual kematian mereka sendiri. Ritual ini adalah ekspresi berdasarkan situasi dan lingkungan mereka.
If you could design your own death, what would the experience be like, and how would you want it to feel? I'm not a health care professional and I'm not an inventor of science. I'm a brand designer that creates experiences by connecting with human emotion. What I know from my mom's experience is that it gave us the tools to talk about death. By sharing her story with friends and strangers, I've learned there is a lot of curiosity behind this. By having the conversation, it helps us to perhaps reframe or even rebrand death from feeling scary or desolate or bleak to re-imagining it as honest, noble and brave.
Jika Anda bisa mendesain kematian Anda sendiri, akan seperti apa prosesnya, dan Anda mau merasa seperti apa? Saya bukan seorang ahli kesehatan ataupun penemu sains. Saya adalah seorang desainer merk yang menciptakan pengalaman dengan menghubungkan perasaan orang. Yang saya dapat dari pengalaman ibu saya adalah cara untuk bicara tentang kematian. Dengan membagikan ceritanya ke teman-teman dan orang asing, Saya belajar bahwa banyak yang penasaran tentang hal ini. Dengan berdiskusi, hal ini membantu kita melihat kematian dari sisi lain dari perasaan takut atau sedih atau suram menjadi jujur, mulia dan berani.
My mom was born a fighter and she became a designer at the end of her life. Today, she would have turned 69 years old and it's her birthday wish that I share her story with you. Death is a universal human experience. What I've shared with you is more than a conversation between myself and my family. It's a conversation that belongs to all of us. Patients, doctors, healthcare providers, policy makers, family members, together we all have a say in creating beautiful experiences from the very beginning, but more importantly, at the end.
Ibu saya dilahirkan sebagai pejuang dan dia menjadi desainer di akhir hidupnya. Hari ini, dia harusnya sudah berumur 69 tahun dan untuk ulang tahunnya dia meminta saya membagikan ceritanya. Kematian adalah proses hidup yang umum. Apa yang saya bagikan lebih dari sekedar percakapan antara saya dan keluarga saya. Ini adalah percakapan antara kita semua. Pasien, dokter, ahli kesehatan, pembuat kebijakan, anggota keluarga, kita sama-sama memiliki suara untuk menciptakan pengalaman yang indah sejak awal, tetapi yang lebih penting, pada akhirnya.
Thank you. (Applause)
Terima kasih. (Tepuk tangan)