Socha: Share. Support. Survive.
Donation protected
E.L.O has a song that says “Wondrous is our great blue ship that sails around the mighty sun and joy to everyone that rides along!”
Help us spread love, support and bring joy to those who really need it.
I am 31 years old and I have recently been diagnosed with blood cancer.
This is not a campaign to save my life, but rather, to HELP US BUILD AN APP that will SAVE MILLIONS OF LIVES.
We live in a world that acts like able-bodied existence is the norm. Yet we all have or will have an ailment or disability at some point in our lives. For many, this disability is temporary: babies grow out of it, some recover from sickness, are rehabilitated,and so forth. For others, it's permanent- the condition lasts their entire lives. But the fact remains, we still all go through a period of disability. Every. Single. One of us.
What if there was an app that serves as a support hub for people who are suffering from an illness and/or disability, that would provide improvement to their daily lives through connecting with others who truly understood what they are doing through?
My Story:
On June 11th this past summer, just as I was about to fall asleep, I rubbed the side of my neck and felt something weird. It was a large, painless lump above my right collarbone. I googled to see what could be causing it and found out immediately that it was a swollen lymph node. And not just any lymph node. This particular lymph node, when enlarged and painless 99% of the time signifies malignancy. After 2 months filled with doctor visits, surgeries (including a lymph node biopsy and mediport implant) and worrying every minute, I was diagnosed with stage II unfavorable Hodgkin’s Lymphoma.
Everyone tells me to stay positive and I admit at times it is very hard: When my work found out, I was told to go on unpaid medical leave, so I did. I have started chemotherapy, and will continue for the next five months. I’m slowly losing my hair, but not my hope. With cancer and other physical ailments, the side effects aren’t just physical, they’re emotional. I know first hand that physical and emotional pain are interrelated. After my first chemo treatment I began to suffer from “burning mouth syndrome” (BSM), which is caused by a type of nerve damage caused by one of the medications in my regimen. It is, hands down, the worst pain I have ever experienced. Interestingly, one of the known causes of BSM is sadness/anxiety, particularly anxiety related to cancer. ( About Hodgkin's / About BSM )
I need take taxis to and from chemo and avoid the subways as much as possible because chemo makes my body very susceptible to bacterial and viral infections. I have to eat organically and naturally, and stay warm during the crude NYC winter.
Living in an imperfect body in an ableist world can be incredibly isolating. But a good support network can be a powerful resource that's literally the difference between life and death. My friends and family have provided emotional support. However, none of them had actually ever gone through what I am currently going through. I reached out to a non-profit and after a few days of emailing back and forth, I was extremely lucky to be matched with a buddy who had just finished the same chemo regimen as myself about a year ago. I also reached out to a few friends who are struggling with cancer via social media for support and tips. These people have been my source of inspiration and without the support of people who have been there I don’t know what sort of state I would be in to date. My support network and their guidance, daily tips and survival stories are bringing me hope. It makes my heart cry tears of joy to be able to connect to people who have “won the battle.” Oftentimes, this support is the only thing that alleviates the pain. Sometimes I will be awake late at night, and since I use email or social media networks to contact my supporters, I don’t always get immediate responses. It has also been very difficult for my husband, who is my caregiver, to find support and guidance from other caregivers who have gone through what he is going through.
The Idea:
I began to wonder about those people who are sick and aren’t in touch with a support network at all or don’t have one that is easy to access and available 24/7/365. People who are also struggling with diseases/disabilities- how do they reach out and receive support? How do their caregivers find information or connect with other caregivers?
So I did some research. I found that these people are resorting to forums to get their information, to connect to people regarding physical to emotional side effects. These online forums and discussion groups are basically graveyards (no pun intended) where questions languished, or answers were outdated. Even buddy programs through third party foundations have a lengthy matching period and certain conditions simply don't allow you much time or energy to waste. So I asked myself: Are the people without support networks left to hope they find people in a waiting room or hospital bed next to them? Is it even acceptable to ask others about their conditions in such places?
Pondering these questions led to my Eureka moment. What if there was an app that allowed easy access to a support hub of people with health issues and their caregivers to quickly/easily connect and share helpful/vital information? I found one app that purported to do this, but they doesn’t really have what I was looking for, in fact, it was so full of bugs it barely works. Being a software developer, I figured, why not create my own? Why not provide a support hub for people just like myself to provide improvement to their daily lives by being able to connect with others who truly understood what they are doing through?
This is where you come in. You will be bringing hope and support to the fingertips of those many, many people who are suffering physical pain and are simultaneously dealing with loneliness and isolation. You’re bringing positivity where it is otherwise unavailable. Funding this campaign allows you to not only make my dream a reality, but improve lives.
With the close assistance of my dear friend, we've decided to call the app Socha. It’s based on an invented term coined by The Dictionary of Obscure Sorrows. You can find out more about the term in this video.
The idea is: we all have our hidden vulnerabilities. We suffer alone, afraid that talking about our problems to people who have not experienced them will only drive them away Being ill helped me realize it's these problems, these shared vulnerabilities that bring us together. If we all showed the side of us we don't want others to see, we would not only feel less alone, we would also be able to build on each other's knowledge. The kind of knowledge survivors share can make or break one’s ability to carry on.
Some of the people who might benefit from this are those with deal with:
- chronic illness
- cancer
- mental illness
- alcoholism or drug addiction
- pregnancy and postpartum issues
As well as:
- trans folx
- people with dietary restrictions
(I am fully aware that some of the above are not ailments or disabilities, but they are conditions of existence that affect your health and may require medical attention, so I think these communities could also benefit from the app.)
It took a lot for me to write this. I didn't want people to feel bad for me, or to think I'm trying to capitalize on my illness. But I mean this is just too important. If I am not part of fixing the problem, I am only part of the problem. I will not let cancer stop me from helping people, I am going to do whatever it takes to make sure I bring support to those who really need it, when they need it and how they need it- which is easily and immediately. No one should have to hang in a supportless, lonely limbo, especially while they are sick.
If this resonated with you at all and you have any money to spare, please donate to this campaign. It costs upwards of $50,000 for design & development for native mobile app creation (not to mention the cost of licensing a new startup business/ lawyer fees, etc) but this would be a nice start. We've even offered some cool perks to sweeten the deal.
I Thank you for your time.
If you have stories of struggle, survival, questions, comments, or any sort of feedback, feel free to reach out to me. It would make me really happy to connect with you.
Help us spread love, support and bring joy to those who really need it.
I am 31 years old and I have recently been diagnosed with blood cancer.
This is not a campaign to save my life, but rather, to HELP US BUILD AN APP that will SAVE MILLIONS OF LIVES.
We live in a world that acts like able-bodied existence is the norm. Yet we all have or will have an ailment or disability at some point in our lives. For many, this disability is temporary: babies grow out of it, some recover from sickness, are rehabilitated,and so forth. For others, it's permanent- the condition lasts their entire lives. But the fact remains, we still all go through a period of disability. Every. Single. One of us.
What if there was an app that serves as a support hub for people who are suffering from an illness and/or disability, that would provide improvement to their daily lives through connecting with others who truly understood what they are doing through?
My Story:
On June 11th this past summer, just as I was about to fall asleep, I rubbed the side of my neck and felt something weird. It was a large, painless lump above my right collarbone. I googled to see what could be causing it and found out immediately that it was a swollen lymph node. And not just any lymph node. This particular lymph node, when enlarged and painless 99% of the time signifies malignancy. After 2 months filled with doctor visits, surgeries (including a lymph node biopsy and mediport implant) and worrying every minute, I was diagnosed with stage II unfavorable Hodgkin’s Lymphoma.
Everyone tells me to stay positive and I admit at times it is very hard: When my work found out, I was told to go on unpaid medical leave, so I did. I have started chemotherapy, and will continue for the next five months. I’m slowly losing my hair, but not my hope. With cancer and other physical ailments, the side effects aren’t just physical, they’re emotional. I know first hand that physical and emotional pain are interrelated. After my first chemo treatment I began to suffer from “burning mouth syndrome” (BSM), which is caused by a type of nerve damage caused by one of the medications in my regimen. It is, hands down, the worst pain I have ever experienced. Interestingly, one of the known causes of BSM is sadness/anxiety, particularly anxiety related to cancer. ( About Hodgkin's / About BSM )
I need take taxis to and from chemo and avoid the subways as much as possible because chemo makes my body very susceptible to bacterial and viral infections. I have to eat organically and naturally, and stay warm during the crude NYC winter.
Living in an imperfect body in an ableist world can be incredibly isolating. But a good support network can be a powerful resource that's literally the difference between life and death. My friends and family have provided emotional support. However, none of them had actually ever gone through what I am currently going through. I reached out to a non-profit and after a few days of emailing back and forth, I was extremely lucky to be matched with a buddy who had just finished the same chemo regimen as myself about a year ago. I also reached out to a few friends who are struggling with cancer via social media for support and tips. These people have been my source of inspiration and without the support of people who have been there I don’t know what sort of state I would be in to date. My support network and their guidance, daily tips and survival stories are bringing me hope. It makes my heart cry tears of joy to be able to connect to people who have “won the battle.” Oftentimes, this support is the only thing that alleviates the pain. Sometimes I will be awake late at night, and since I use email or social media networks to contact my supporters, I don’t always get immediate responses. It has also been very difficult for my husband, who is my caregiver, to find support and guidance from other caregivers who have gone through what he is going through.
The Idea:
I began to wonder about those people who are sick and aren’t in touch with a support network at all or don’t have one that is easy to access and available 24/7/365. People who are also struggling with diseases/disabilities- how do they reach out and receive support? How do their caregivers find information or connect with other caregivers?
So I did some research. I found that these people are resorting to forums to get their information, to connect to people regarding physical to emotional side effects. These online forums and discussion groups are basically graveyards (no pun intended) where questions languished, or answers were outdated. Even buddy programs through third party foundations have a lengthy matching period and certain conditions simply don't allow you much time or energy to waste. So I asked myself: Are the people without support networks left to hope they find people in a waiting room or hospital bed next to them? Is it even acceptable to ask others about their conditions in such places?
Pondering these questions led to my Eureka moment. What if there was an app that allowed easy access to a support hub of people with health issues and their caregivers to quickly/easily connect and share helpful/vital information? I found one app that purported to do this, but they doesn’t really have what I was looking for, in fact, it was so full of bugs it barely works. Being a software developer, I figured, why not create my own? Why not provide a support hub for people just like myself to provide improvement to their daily lives by being able to connect with others who truly understood what they are doing through?
This is where you come in. You will be bringing hope and support to the fingertips of those many, many people who are suffering physical pain and are simultaneously dealing with loneliness and isolation. You’re bringing positivity where it is otherwise unavailable. Funding this campaign allows you to not only make my dream a reality, but improve lives.
With the close assistance of my dear friend, we've decided to call the app Socha. It’s based on an invented term coined by The Dictionary of Obscure Sorrows. You can find out more about the term in this video.
The idea is: we all have our hidden vulnerabilities. We suffer alone, afraid that talking about our problems to people who have not experienced them will only drive them away Being ill helped me realize it's these problems, these shared vulnerabilities that bring us together. If we all showed the side of us we don't want others to see, we would not only feel less alone, we would also be able to build on each other's knowledge. The kind of knowledge survivors share can make or break one’s ability to carry on.
Some of the people who might benefit from this are those with deal with:
- chronic illness
- cancer
- mental illness
- alcoholism or drug addiction
- pregnancy and postpartum issues
As well as:
- trans folx
- people with dietary restrictions
(I am fully aware that some of the above are not ailments or disabilities, but they are conditions of existence that affect your health and may require medical attention, so I think these communities could also benefit from the app.)
It took a lot for me to write this. I didn't want people to feel bad for me, or to think I'm trying to capitalize on my illness. But I mean this is just too important. If I am not part of fixing the problem, I am only part of the problem. I will not let cancer stop me from helping people, I am going to do whatever it takes to make sure I bring support to those who really need it, when they need it and how they need it- which is easily and immediately. No one should have to hang in a supportless, lonely limbo, especially while they are sick.
If this resonated with you at all and you have any money to spare, please donate to this campaign. It costs upwards of $50,000 for design & development for native mobile app creation (not to mention the cost of licensing a new startup business/ lawyer fees, etc) but this would be a nice start. We've even offered some cool perks to sweeten the deal.
I Thank you for your time.
If you have stories of struggle, survival, questions, comments, or any sort of feedback, feel free to reach out to me. It would make me really happy to connect with you.
Organizer
Seema Hoover
Organizer
Brooklyn, NY