whitefeather
Thank the gods for Death
- Apr 23, 2020
- 518
4/19/23
Dear friends, both IRL and internet,
You may not have heard from me for some time because of the worsening of my illness in the last year. From my internet presence, you know me as an artist, prolific meme curator, etc. etc., and it was a joy to share that part of me with you online. At some point over the last year, my illness took over every aspect of my being: it is difficult to convey the complexity of my situation compared to those with illnesses such as cancer or a well understood terminal illness. I am hoping to illuminate some understanding of my illness over the last 11 years, and let you know I had a Voluntary Assisted Death (VAD) at the Pegasos Association in Switzerland April 25, 2023.
In 2012 I started experiencing severe migraines as well as a host of other symptoms, episodes that turned into a daily experience of mysterious chronic illness. Over the past 11 years, I worked with countless doctors, naturopaths, acupuncturists, chiropractors, etc – ad infinitum. It took years to find some labels for my disabling constellation of symptoms. To the best of my understanding, I had an undetected Lyme infection (diagnosed 5 years after my symptoms began) which snowballed into a complex chronic illness. This was exacerbated by the mold in the house I lived in, where I was trying to recover. I would end up in the ER for severe migraines, sometimes several times per month in the worst stretches. I was also managing chronic fatigue and multiple debilitating GI problems with their corresponding pain. Managing this required endless medication trials and supplement regimens. I had to leave behind what I had just begun to build, of a career in fashion and as an artist, in the way I had envisioned being in the world. In the end, I lost the capacity to dance, cycle, practice yoga, enjoy the beach and engage with the creative community; these had been the pillars of my morale and what little vitality I still had.
Throughout my illness, I shared a lot of my experience online. From that, I gained the friendship and support of the chronically ill and disabled community on Instagram. Around 2019, I began drawing portraits after my dad gifted me an ipad and apple pencil. Because I had found this online community, I began drawing portraits of those also suffering and battling chronic illness, a rare joy to be able to brighten someone's day with a portrait. At one point I had the idea that I might make a book of these portraits, which I imagined would include quotes from those portrayed about their experience of chronic illness, particularly invisible chronic illness. Unfortunately, I did not have the ability to bring this to fruition, but I am glad to have my IG account as a record of many of these portraits I did, of both personal friends and chronically ill internet connections.
One of the most difficult aspects of my illness is that it has been "invisible".You may know I've been sick, but there were no exterior markers of my illness, or of any of the horrors I'd lived through. I saw this reflected in you, the chronically ill online community. Many of you are brilliant at doing your own makeup, for example, and have that as a creative outlet. We uplift ourselves by taking care of our appearance, but that can put us in a frustrating situation where we are perceived as looking healthy and normal. As my condition declined in the last year, I no longer had the energy or inspiration to share anything online. Having an online presence/persona had allowed me both a platform to share my chronically ill life, while also having a place to still exist in the world with how I wanted to present, serving y'all LEWKS. But once I lost the ability to have that level of self-care, I no longer wanted to be seen in any capacity. I tried to keep people updated somewhat through the hell of the last year in my Stories, but as I didn't have it in me to balance the serious with a lighter side of memes, I eventually stopped. It just felt too painful to be in the mirror of social media.
Over the course of my illness I lived with my mom, and we developed a very loving and close relationship with her as my caregiver and thought partner; we were a uniquely precious team. Many others in complex chronic conditions with mysterious diseases are disbelieved both by friends and family, which I've witnessed online and in individual friendships. So I have been very fortunate in that for the most part – especially with my mom – I have been believed and my condition has been taken very seriously. For that, I am eternally grateful. I had my mom solidly by my side navigating the medical system and the alternative medicine world, where I so desperately sought both treatment of my underlying conditions as well as symptom management. I cannot imagine having done that without her support, and I feel deeply for all of my friends who lack this type of relationship with a caregiver, or don't have a caregiver at all despite being very ill.
In explaining what's happened to me, its important to understand that I had a uniquely, highly sensitive body that often responded to treatments in unexpected and challenging ways, which has meant a heightened sensitivity to medications and all chemicals, a known symptom of mold toxicity as well as Lyme. This meant that I was very prone to developing side effects with medication, and in the last years became intolerant of the few medications I could take to manage my condition. The treatment for Lyme and mold is quite arduous, and I could not find symptom management enough to tolerate these difficult treatments. I completely exhausted myself trying the myriad recommended regimens under the care of specialists.
In the spring of 2021 I went to California to get away from the mold and landed in a very difficult and tumultuous living situation with friends in San Diego. I ended up needing to live on my own, which was not possible as my condition was worsening. The medications that had managed my symptoms for so long were no longer effective and caused new pain syndromes and intolerable side effects. This included ketamine, which had been such an integral part of being able to exercise and live with a tolerable level of depression and pain. I was working with a new doctor, and his treatment plan was not only unsuccessful but detrimental. Without tolerated rescue medications, either at home or in the ER, I became so much more debilitated. I had to try to adjust to an unbearable amount of pain, with the intense fear of suddenly not being able to relieve it. I also became increasingly sensitive to chemical smell, light, and sound— essentially, an inability to tolerate the world. This is when my life became an unimaginable hell and I entered a period of steep decline. In the last year, nearly every system and organ in my body has been compromised and I lost the capacity for the very basics of living, including eating, sleeping, moving, and being outdoors. The loss of these things, particularly the ability to dance, cycle, do yoga, or any exercise, was devastating for me, as this had been so key to battling the major depressive disorder I developed as part of my illness.
It may be hard to understand from the outside that someone has unbearably painful and debilitating chronic symptoms that cannot be alleviated by any tradition of medicine; for some of you reading this from the chronic illness community, unfortunately, that may be all too real. This is a horror that no one wants to imagine, and so it is often something that it makes people uncomfortable to hear about.
In addition to the trauma of my illness itself, I have also been traumatized by my experience of being a patient in our medical system. When doctors are unable to help, I now expect to be blamed, sometimes at volume. I have been criticized, shouted at, threatened, and dropped as a patient because of being too sick or unwilling to take medications with unbearable side effects. Doctors frequently express more concern for their medical license than they do for me, an unconventional patient. Among the traumatizing experiences I have had within the medical system are the times I was discharged from the emergency room without any relief from level 10 pain. Because of the opioid crisis, I was treated with suspicion for being an addict and refused treatment, or denied treatment in the name of preventing addiction. I count myself lucky that in my years of opioid use for pain, I never developed an addiction or dependence on opioid substances. I stopped using them because I eventually became intolerant of them and they no longer alleviated my pain, as I couldn't tolerate a single anti-nausea medication with which to take them. Without a reliable safety net for pain, I lived in terror of my next severe migraine. The PTSD from the medical trauma is as significant a factor as the pain and suffering from my illness in making my decision to die with dignity. Towards the end, seeking out treatment only caused more pain and suffering. It has been over a decade of battling a medical system and alternative health system that wasn't helping me and often treated me and my mother with hostility.
In addition to the medical trauma I've dealt with, it's also been extremely difficult as a person with chronic illness to deal with the reactions and unsolicited advice of other people, no matter how well intentioned it was. I wanted people to know what was happening to me and to receive expressions of care and concern, without having to justify or explain how I was handling my situation. Even though I was always researching and pursuing ways of getting better, this often went unrecognized and instead I received a never-ending influx of unsolicited advice, in the form of proselytizing about ways I should pursue healing. In addition to spirituality or religion, people proselytized about neuroplasticity recovery programs, psychedelics, shamanistic and psychological work, and myriad forms of alternative or traditional medicine. None of this acknowledged the extent of my efforts to find healing on emotional, spiritual, mental and physical levels. I was constantly fielding people's input and blame that was rife with assumptions. I struggled to maintain my self esteem in light of being patronized and criticized for not doing enough on my own behalf. This wore me down on a deep level, and contributed to my sense that I could no longer go on. In the Death with Dignity community, I found respect, compassion, and acknowledgement for my self-responsibility.
I could no longer tolerate both my illness and the trauma caused by the medical system, for which there was no end. Technically, I did not have a "terminal" illness. However, I view my illness as terminal because I was no longer willing or able to continue suffering with no end in sight. My illness had already taken away my life. I could not do or enjoy the things that fulfilled me, or even execute basic self care. I say all this in hopes that you can conceptualize my illness as terminal beyond the conventional definition.
Dying is a deeply frightening concept to most and is stigmatized for everyone but a select few. I have needed the same gentle compassion that one would offer a beloved pet that needs to be put down, but unfortunately that understanding and gentle compassion is often not offered to suffering humans because of the way our society views death in general and suicide in particular. Despite some progress in a human relationship to death, the legislative process moves very slowly. It is only just now that Canada offers medical assistance in dying (MAID) for people like me, but one needs to be a citizen to access this option. Therefore, my only choice was to go to Switzerland to an organization called the Pegasos Association. They offer to citizens and non- citizens alike the compassion and care that elsewhere is offered only to those with a conventionally defined terminal illness. I was able to access this option because of immense privilege, as it is not an accessible cost for the majority of people, nor are many in a similar situation as mine in a condition that they can air travel.
You may have varying beliefs that impact how this lands with you; it may not fit your world view or spiritual or religious convictions. For this reason I have felt too vulnerable to relay or explain my choice to most people in advance. I have been extremely fortunate to have had an inner circle that has been able to see me, understand and support my right to self-deliverance. I hope you are able to understand that I did everything I could and took great deliberation to come to this decision.
As I am writing this now, I have a date for what they call a VAD at the Pegasos Association on April 25th, 2023. They offer the opportunity to end my life in a medically safe and legal way, with family and friends present. It took all of my savings and energy. It was a difficult process to apply; I had to reply to many questions about my illness and decision, submit extensive medical records, and have a psychiatric examination to be deemed sound of mind. I was so grateful they accepted me. I met many people online in similarly dire circumstances who did not have this option and I feel deeply for them, as they may not be able to have a safe and peaceful passing. Once I had decided I was not going to continue living, it was a hard and lonely search for information and support online, and it took me a long time to find out about Exit International, the most prominent Right to Die organization, the Final Exit Handbook, The Peaceful Pill Handbook, and the forum Sanctioned Suicide (SS), all which offer support for people in my position. These resources face extreme controversy, particularly the SS forum, which is unfairly negatively depicted in the media. I was fortunate to meet a new online community of people who were also at my stage of illness and life decision making through SS and a facebook group called Death with Dignity. It is a place for both discussion of laws and the political landscape around MAID, but also a place for suffering people to share their thoughts and connect on the personal experience leading up to and applying for a chosen exit. I find it extremely hypocritical that there is so much toxic, horrendous, easily-available content online, but access to this kind of information and support is censored and difficult to find. Fortunately, I did stumble across these resources with enough digging, and many of the friends I made there were suffering and bedbound from severe ME/CFS (Chronic Fatigue Syndrome) and other conditions similar to Lyme's complexity, which was equal parts validating and heartbreaking.
I hope in the future that we continue to progress as Canada has, to offer safe and legal self-determination for people with refractory chronic illness. The change in Candian law was the result of the advocacy of a grieving mother whose chronically ill son adult son died by suicide alone in a hotel, rather than endanger his parents by having them with him at the end. People in my condition should not be forced to endure unending unbearable suffering, nor should they only have the option of ending their life alone under risky and potentially painful circumstances of attempted suicide. I hope by voicing how and why the way I left this physical world begins a shift in thinking and awareness about people with these nebulous complex chronic illnesses, how deserving they are of the same rights as people with terminal illness, and therefore the rights that families should have to accompany their loved ones should they choose to end their suffering.
This is not the eloquent letter I want to write, but I have done my best with my remaining energy to leave you with some understanding and closure. I did not want my death to be a mystery or secret. I want it to be meaningful insofar as you are perhaps more aware of the seriousness of complex non-terminal chronic illnesses such as Lyme, the difficulty and stigma around a chosen exit, and hopefully, a way to appreciate the importance of this kind of choice being made available in the US. If you are someone who also has such an illness, I hope my story validates your suffering and perhaps makes you feel less alone, and gives you more information if you are already leaning into this decision. Of course, I do not intend to encourage people to choose a VAD or MAID, but hope to de-stigmatize the choice in the context of this type of illness. Through excruciating experience I was made to ask myself the questions most people hope to never encounter. I have so much respect for the community in which I found, and hope others can see the importance of trusting people who know they are fully done enduring their illness, just as much as we respect people continuing to battle their illness. We are saturated with images, conversations, and sexy movies about accidental or violent deaths at the hands of others. But what about a good, peaceful death at one's own choice of time, surrounded by loved ones? It is my deepest wish for this to be honored and respected, given a seat at the table of how we live and die. It saddens me so much that the medical system and our culture values whether one is alive over their quality of life, and therefore many are led to this difficult place of unbearable suffering without support in society.
My story is one of the failures of the medical system as much as it is a uniquely sensitive body that was difficult to treat. I do not place blame on any single reason for how I ended up here; a congregation of circumstances and realities lead me to a very trapped place, full of too many double binds to endure. I am eternally grateful for the choice the Pegasos Association offered me, and to the loving circle of friends and family that saw and accepted my reality as it is without judgment, and were able to let me go. My situation may have been rare in a tragic way, but equally rare in a precious way, full of love.
Thank you for reading and love to all of you,
A.
Dear friends, both IRL and internet,
You may not have heard from me for some time because of the worsening of my illness in the last year. From my internet presence, you know me as an artist, prolific meme curator, etc. etc., and it was a joy to share that part of me with you online. At some point over the last year, my illness took over every aspect of my being: it is difficult to convey the complexity of my situation compared to those with illnesses such as cancer or a well understood terminal illness. I am hoping to illuminate some understanding of my illness over the last 11 years, and let you know I had a Voluntary Assisted Death (VAD) at the Pegasos Association in Switzerland April 25, 2023.
In 2012 I started experiencing severe migraines as well as a host of other symptoms, episodes that turned into a daily experience of mysterious chronic illness. Over the past 11 years, I worked with countless doctors, naturopaths, acupuncturists, chiropractors, etc – ad infinitum. It took years to find some labels for my disabling constellation of symptoms. To the best of my understanding, I had an undetected Lyme infection (diagnosed 5 years after my symptoms began) which snowballed into a complex chronic illness. This was exacerbated by the mold in the house I lived in, where I was trying to recover. I would end up in the ER for severe migraines, sometimes several times per month in the worst stretches. I was also managing chronic fatigue and multiple debilitating GI problems with their corresponding pain. Managing this required endless medication trials and supplement regimens. I had to leave behind what I had just begun to build, of a career in fashion and as an artist, in the way I had envisioned being in the world. In the end, I lost the capacity to dance, cycle, practice yoga, enjoy the beach and engage with the creative community; these had been the pillars of my morale and what little vitality I still had.
Throughout my illness, I shared a lot of my experience online. From that, I gained the friendship and support of the chronically ill and disabled community on Instagram. Around 2019, I began drawing portraits after my dad gifted me an ipad and apple pencil. Because I had found this online community, I began drawing portraits of those also suffering and battling chronic illness, a rare joy to be able to brighten someone's day with a portrait. At one point I had the idea that I might make a book of these portraits, which I imagined would include quotes from those portrayed about their experience of chronic illness, particularly invisible chronic illness. Unfortunately, I did not have the ability to bring this to fruition, but I am glad to have my IG account as a record of many of these portraits I did, of both personal friends and chronically ill internet connections.
One of the most difficult aspects of my illness is that it has been "invisible".You may know I've been sick, but there were no exterior markers of my illness, or of any of the horrors I'd lived through. I saw this reflected in you, the chronically ill online community. Many of you are brilliant at doing your own makeup, for example, and have that as a creative outlet. We uplift ourselves by taking care of our appearance, but that can put us in a frustrating situation where we are perceived as looking healthy and normal. As my condition declined in the last year, I no longer had the energy or inspiration to share anything online. Having an online presence/persona had allowed me both a platform to share my chronically ill life, while also having a place to still exist in the world with how I wanted to present, serving y'all LEWKS. But once I lost the ability to have that level of self-care, I no longer wanted to be seen in any capacity. I tried to keep people updated somewhat through the hell of the last year in my Stories, but as I didn't have it in me to balance the serious with a lighter side of memes, I eventually stopped. It just felt too painful to be in the mirror of social media.
Over the course of my illness I lived with my mom, and we developed a very loving and close relationship with her as my caregiver and thought partner; we were a uniquely precious team. Many others in complex chronic conditions with mysterious diseases are disbelieved both by friends and family, which I've witnessed online and in individual friendships. So I have been very fortunate in that for the most part – especially with my mom – I have been believed and my condition has been taken very seriously. For that, I am eternally grateful. I had my mom solidly by my side navigating the medical system and the alternative medicine world, where I so desperately sought both treatment of my underlying conditions as well as symptom management. I cannot imagine having done that without her support, and I feel deeply for all of my friends who lack this type of relationship with a caregiver, or don't have a caregiver at all despite being very ill.
In explaining what's happened to me, its important to understand that I had a uniquely, highly sensitive body that often responded to treatments in unexpected and challenging ways, which has meant a heightened sensitivity to medications and all chemicals, a known symptom of mold toxicity as well as Lyme. This meant that I was very prone to developing side effects with medication, and in the last years became intolerant of the few medications I could take to manage my condition. The treatment for Lyme and mold is quite arduous, and I could not find symptom management enough to tolerate these difficult treatments. I completely exhausted myself trying the myriad recommended regimens under the care of specialists.
In the spring of 2021 I went to California to get away from the mold and landed in a very difficult and tumultuous living situation with friends in San Diego. I ended up needing to live on my own, which was not possible as my condition was worsening. The medications that had managed my symptoms for so long were no longer effective and caused new pain syndromes and intolerable side effects. This included ketamine, which had been such an integral part of being able to exercise and live with a tolerable level of depression and pain. I was working with a new doctor, and his treatment plan was not only unsuccessful but detrimental. Without tolerated rescue medications, either at home or in the ER, I became so much more debilitated. I had to try to adjust to an unbearable amount of pain, with the intense fear of suddenly not being able to relieve it. I also became increasingly sensitive to chemical smell, light, and sound— essentially, an inability to tolerate the world. This is when my life became an unimaginable hell and I entered a period of steep decline. In the last year, nearly every system and organ in my body has been compromised and I lost the capacity for the very basics of living, including eating, sleeping, moving, and being outdoors. The loss of these things, particularly the ability to dance, cycle, do yoga, or any exercise, was devastating for me, as this had been so key to battling the major depressive disorder I developed as part of my illness.
It may be hard to understand from the outside that someone has unbearably painful and debilitating chronic symptoms that cannot be alleviated by any tradition of medicine; for some of you reading this from the chronic illness community, unfortunately, that may be all too real. This is a horror that no one wants to imagine, and so it is often something that it makes people uncomfortable to hear about.
In addition to the trauma of my illness itself, I have also been traumatized by my experience of being a patient in our medical system. When doctors are unable to help, I now expect to be blamed, sometimes at volume. I have been criticized, shouted at, threatened, and dropped as a patient because of being too sick or unwilling to take medications with unbearable side effects. Doctors frequently express more concern for their medical license than they do for me, an unconventional patient. Among the traumatizing experiences I have had within the medical system are the times I was discharged from the emergency room without any relief from level 10 pain. Because of the opioid crisis, I was treated with suspicion for being an addict and refused treatment, or denied treatment in the name of preventing addiction. I count myself lucky that in my years of opioid use for pain, I never developed an addiction or dependence on opioid substances. I stopped using them because I eventually became intolerant of them and they no longer alleviated my pain, as I couldn't tolerate a single anti-nausea medication with which to take them. Without a reliable safety net for pain, I lived in terror of my next severe migraine. The PTSD from the medical trauma is as significant a factor as the pain and suffering from my illness in making my decision to die with dignity. Towards the end, seeking out treatment only caused more pain and suffering. It has been over a decade of battling a medical system and alternative health system that wasn't helping me and often treated me and my mother with hostility.
In addition to the medical trauma I've dealt with, it's also been extremely difficult as a person with chronic illness to deal with the reactions and unsolicited advice of other people, no matter how well intentioned it was. I wanted people to know what was happening to me and to receive expressions of care and concern, without having to justify or explain how I was handling my situation. Even though I was always researching and pursuing ways of getting better, this often went unrecognized and instead I received a never-ending influx of unsolicited advice, in the form of proselytizing about ways I should pursue healing. In addition to spirituality or religion, people proselytized about neuroplasticity recovery programs, psychedelics, shamanistic and psychological work, and myriad forms of alternative or traditional medicine. None of this acknowledged the extent of my efforts to find healing on emotional, spiritual, mental and physical levels. I was constantly fielding people's input and blame that was rife with assumptions. I struggled to maintain my self esteem in light of being patronized and criticized for not doing enough on my own behalf. This wore me down on a deep level, and contributed to my sense that I could no longer go on. In the Death with Dignity community, I found respect, compassion, and acknowledgement for my self-responsibility.
I could no longer tolerate both my illness and the trauma caused by the medical system, for which there was no end. Technically, I did not have a "terminal" illness. However, I view my illness as terminal because I was no longer willing or able to continue suffering with no end in sight. My illness had already taken away my life. I could not do or enjoy the things that fulfilled me, or even execute basic self care. I say all this in hopes that you can conceptualize my illness as terminal beyond the conventional definition.
Dying is a deeply frightening concept to most and is stigmatized for everyone but a select few. I have needed the same gentle compassion that one would offer a beloved pet that needs to be put down, but unfortunately that understanding and gentle compassion is often not offered to suffering humans because of the way our society views death in general and suicide in particular. Despite some progress in a human relationship to death, the legislative process moves very slowly. It is only just now that Canada offers medical assistance in dying (MAID) for people like me, but one needs to be a citizen to access this option. Therefore, my only choice was to go to Switzerland to an organization called the Pegasos Association. They offer to citizens and non- citizens alike the compassion and care that elsewhere is offered only to those with a conventionally defined terminal illness. I was able to access this option because of immense privilege, as it is not an accessible cost for the majority of people, nor are many in a similar situation as mine in a condition that they can air travel.
You may have varying beliefs that impact how this lands with you; it may not fit your world view or spiritual or religious convictions. For this reason I have felt too vulnerable to relay or explain my choice to most people in advance. I have been extremely fortunate to have had an inner circle that has been able to see me, understand and support my right to self-deliverance. I hope you are able to understand that I did everything I could and took great deliberation to come to this decision.
As I am writing this now, I have a date for what they call a VAD at the Pegasos Association on April 25th, 2023. They offer the opportunity to end my life in a medically safe and legal way, with family and friends present. It took all of my savings and energy. It was a difficult process to apply; I had to reply to many questions about my illness and decision, submit extensive medical records, and have a psychiatric examination to be deemed sound of mind. I was so grateful they accepted me. I met many people online in similarly dire circumstances who did not have this option and I feel deeply for them, as they may not be able to have a safe and peaceful passing. Once I had decided I was not going to continue living, it was a hard and lonely search for information and support online, and it took me a long time to find out about Exit International, the most prominent Right to Die organization, the Final Exit Handbook, The Peaceful Pill Handbook, and the forum Sanctioned Suicide (SS), all which offer support for people in my position. These resources face extreme controversy, particularly the SS forum, which is unfairly negatively depicted in the media. I was fortunate to meet a new online community of people who were also at my stage of illness and life decision making through SS and a facebook group called Death with Dignity. It is a place for both discussion of laws and the political landscape around MAID, but also a place for suffering people to share their thoughts and connect on the personal experience leading up to and applying for a chosen exit. I find it extremely hypocritical that there is so much toxic, horrendous, easily-available content online, but access to this kind of information and support is censored and difficult to find. Fortunately, I did stumble across these resources with enough digging, and many of the friends I made there were suffering and bedbound from severe ME/CFS (Chronic Fatigue Syndrome) and other conditions similar to Lyme's complexity, which was equal parts validating and heartbreaking.
I hope in the future that we continue to progress as Canada has, to offer safe and legal self-determination for people with refractory chronic illness. The change in Candian law was the result of the advocacy of a grieving mother whose chronically ill son adult son died by suicide alone in a hotel, rather than endanger his parents by having them with him at the end. People in my condition should not be forced to endure unending unbearable suffering, nor should they only have the option of ending their life alone under risky and potentially painful circumstances of attempted suicide. I hope by voicing how and why the way I left this physical world begins a shift in thinking and awareness about people with these nebulous complex chronic illnesses, how deserving they are of the same rights as people with terminal illness, and therefore the rights that families should have to accompany their loved ones should they choose to end their suffering.
This is not the eloquent letter I want to write, but I have done my best with my remaining energy to leave you with some understanding and closure. I did not want my death to be a mystery or secret. I want it to be meaningful insofar as you are perhaps more aware of the seriousness of complex non-terminal chronic illnesses such as Lyme, the difficulty and stigma around a chosen exit, and hopefully, a way to appreciate the importance of this kind of choice being made available in the US. If you are someone who also has such an illness, I hope my story validates your suffering and perhaps makes you feel less alone, and gives you more information if you are already leaning into this decision. Of course, I do not intend to encourage people to choose a VAD or MAID, but hope to de-stigmatize the choice in the context of this type of illness. Through excruciating experience I was made to ask myself the questions most people hope to never encounter. I have so much respect for the community in which I found, and hope others can see the importance of trusting people who know they are fully done enduring their illness, just as much as we respect people continuing to battle their illness. We are saturated with images, conversations, and sexy movies about accidental or violent deaths at the hands of others. But what about a good, peaceful death at one's own choice of time, surrounded by loved ones? It is my deepest wish for this to be honored and respected, given a seat at the table of how we live and die. It saddens me so much that the medical system and our culture values whether one is alive over their quality of life, and therefore many are led to this difficult place of unbearable suffering without support in society.
My story is one of the failures of the medical system as much as it is a uniquely sensitive body that was difficult to treat. I do not place blame on any single reason for how I ended up here; a congregation of circumstances and realities lead me to a very trapped place, full of too many double binds to endure. I am eternally grateful for the choice the Pegasos Association offered me, and to the loving circle of friends and family that saw and accepted my reality as it is without judgment, and were able to let me go. My situation may have been rare in a tragic way, but equally rare in a precious way, full of love.
Thank you for reading and love to all of you,
A.
