Helping Sally
Donation protected
My name is Mani Bruce Mitchell, I have known Sally for over 15 years and consider h/er a friend, mentor, inspirational human of the highest order - fellow intersex activist. Sally needs our help she writes to us below in her own words:
Dear fellow-activists and friends
Explaining my situation: My body has been failing for some time. At the end of July 2011, it took a sudden turn for the worse, making it increasingly difficult for me to function. Mobility was already a problem -- I should have been in a wheelchair and in receipt of assistance with some everyday tasks a long time ago, but it has not been feasible. A blood test showed that I was very severely anaemic, and I was admitted to hospital for a substantial blood-transfusion and an iron infusion. Luckily, I was on medical aid here in South Africa, which made this possible. A bone-marrow biopsy at the end of 2011 showed that my iron stores were completely depleted, as were my Vitamin B12 stores, a life-threatening situation. The anaemia involves both iron absorption anaemia and pernicious anaemia. Since then, I have been admitted to hospital several times each year thanks to medical aid, generally for massive iron infusions and sometimes for blood transfusions as well. My body exhausts a lifetime's worth of iron stores every two or three months, though quite how so much bound iron is lost remains unexplained. The transfusions and infusions are simply an attempt at ad hoc management, something like the treatment of a fracture with band-aids. I also started to experience frequent bouts of angina, diagnosed as unstable angina, technically a medical emergency which could kill me at any time, and I was advised to avoid any kind of physical exertion as far as is possible. A capsule endoscopy in around last August or September explained the iron absorption problem to some degree. It showed that an auto-immune condition called auto-immune villous atrophy, in a form not connected with coeliac disease, has destroyed practically all the villii, tiny finger-like protuberances which line the small intestine and which are crucial to the absorption of major nutrients. It is extremely rare in adults -- a paper from around 2007 or 2008 stated that there were just eleven known cases of the condition in adults at that time -- and there is no proven method of treatment. The gastro-enterologist wanted to put me on an experimental course of topical tablets -- presumably some form of cortisone -- for a week, but the capsules were simply unaffordable on any scenario. It has been clear for some time that my body is failing and I am not likely to have long to live even on the best scenarios. It has also become impossible for me to work.
Since July 2012 in particular, I have subsidised Intersex South Africa (ISSA) heavily -- by not taking any salary for three months back then so that other employees could be paid, and by taking a half-salary -- significantly less than my monthly expenses -- between October 2012 and last October. ISSA was hit very hard indeed by the funding crisis which was a consequence of global economic meltdown, and over the last few months this has been exacerbated greatly by the collapse of my health. As of October 2013, I have been without any salary at all, and such financial reserves as I had are exhausted. Somehow, I have managed to ensure that my rent (currently around $540 monthly) is paid until 15 February and my medical aid (around $340 monthly, plus $150 co-payments for medications monthly) is paid up until the end of January. Electricity (around $50 per month) will not last that long, I can no longer afford the medications on which my immediate survival depends, and I am currently unable to replenish my stock of medication which is crucial to my survival. Thus far, I've been able to afford food, but that will also be beyond my means soon enough. My ability to keep in touch with anyone -- partly through telephony and largely through the internet (around $90 per month) -- will also come to an end, as matters stand, at around the end of the month. There are other routine expenses due at month end, not counting food: in order to get through the month turn and to buy more time to try to find a place within the state old age care system requires something of the order of $1500, which appals me. What looms is loss of all the requisites for survival and street-homelessness without safety-nets which my body cannot possibly weather. I have been trying to secure admission to a state old-age facility, but processes are often time-consuming and complex, and not being mobile or indeed having means to get transport or the sheer energy to run around to obtain affidavits, statements and other required documentation -- very modest efforts trigger angina attacks, for which I take tablets which often provide symptomatic relief (which I will not be able to afford when my current supply runs out) -- makes it impossible for me to get things together before time runs out as matters now stand. Even were I to be admitted to a home, access to medications and most medical treatment would probably be at an end; but what I seek is to be able to die in a bed (ideally my own) with the possibility of some palliative care and with such dignity and comfort as is possible.
My priority is to be in a position to buy more time to try to find a solution involving a state institution or some other solution. This is the most pressing need in the short-term. Sustainability is quite another issue: as far as I know, there are no housing associations here for which I would be eligible, and I need to be admitted to a state institution. This will not address the medical issues on the whole, but might at least afford me a dignified end. A larger issue which I believe that the activist community needs to tackle in the longer term "“ probably well beyond my life-time "“ is to look at ways, as a matter of urgency, in which activists in circumstances like mine, where commitment to activism and unanticipated illness take toll can be afforded help and support. I am neither the first nor the last activist to be in these straits and believe that this needs to involve approaches to international institutions, states and international donors and will require the setting up of a support-system. Our issue "“ intersex "“ is being taken up both at the level of states and at the international level, and I believe that safety-nets can be put in place for activists though it will require much lobbying, time and patience.
As far as the mechanics for receipt of funds is concerned, I have an account the details of which are known to Mani. Currency regulations on South Africa prohibit receipt of funds from a PayPal account based outside South Africa, and efforts on my part to set up a South African PayPal account failed for reasons even PayPal could not explain. I assume that there is no impediment to the establishment of a website and transferring funds from there to my account; but PayPal as a mechanism is to be avoided.
A possibility: for a long time, I have wanted to write memoirs. Sitting at the computer and bashing more than a couple of pages out is not something I can do anymore, but were I able to record and to have someone transcribe, it would be do-able. On this scenario, I would hope to produce an outline and sample chapter material, in order to try to secure a contract to write the memoirs. It is not simple: publishers in the USA tend not to be willing to look at manuscripts submitted directly: one needs to have a literary agent who serves as an intermediary. In the event that I can survive for long enough, this could perhaps yield sustainability.
In summary: my immediate need is to get through the coming month-turn and as much longer as is feasible. Questions about sustainability are relevant only if this can be achieved. For the longer term, we need to think about seeking to get a support-system in place for intersex activists who find themselves in similar circumstances, and this will require more than the private resources of members of our intersex activist community and investment of energy, time and patience. This longer-term project would be unlikely to benefit me personally: it would be a matter of legacy and a project and resource for all of us.
All of this is complicated, and it embarrasses me to make these requests.
With all my love
Sally
Dear fellow-activists and friends
Explaining my situation: My body has been failing for some time. At the end of July 2011, it took a sudden turn for the worse, making it increasingly difficult for me to function. Mobility was already a problem -- I should have been in a wheelchair and in receipt of assistance with some everyday tasks a long time ago, but it has not been feasible. A blood test showed that I was very severely anaemic, and I was admitted to hospital for a substantial blood-transfusion and an iron infusion. Luckily, I was on medical aid here in South Africa, which made this possible. A bone-marrow biopsy at the end of 2011 showed that my iron stores were completely depleted, as were my Vitamin B12 stores, a life-threatening situation. The anaemia involves both iron absorption anaemia and pernicious anaemia. Since then, I have been admitted to hospital several times each year thanks to medical aid, generally for massive iron infusions and sometimes for blood transfusions as well. My body exhausts a lifetime's worth of iron stores every two or three months, though quite how so much bound iron is lost remains unexplained. The transfusions and infusions are simply an attempt at ad hoc management, something like the treatment of a fracture with band-aids. I also started to experience frequent bouts of angina, diagnosed as unstable angina, technically a medical emergency which could kill me at any time, and I was advised to avoid any kind of physical exertion as far as is possible. A capsule endoscopy in around last August or September explained the iron absorption problem to some degree. It showed that an auto-immune condition called auto-immune villous atrophy, in a form not connected with coeliac disease, has destroyed practically all the villii, tiny finger-like protuberances which line the small intestine and which are crucial to the absorption of major nutrients. It is extremely rare in adults -- a paper from around 2007 or 2008 stated that there were just eleven known cases of the condition in adults at that time -- and there is no proven method of treatment. The gastro-enterologist wanted to put me on an experimental course of topical tablets -- presumably some form of cortisone -- for a week, but the capsules were simply unaffordable on any scenario. It has been clear for some time that my body is failing and I am not likely to have long to live even on the best scenarios. It has also become impossible for me to work.
Since July 2012 in particular, I have subsidised Intersex South Africa (ISSA) heavily -- by not taking any salary for three months back then so that other employees could be paid, and by taking a half-salary -- significantly less than my monthly expenses -- between October 2012 and last October. ISSA was hit very hard indeed by the funding crisis which was a consequence of global economic meltdown, and over the last few months this has been exacerbated greatly by the collapse of my health. As of October 2013, I have been without any salary at all, and such financial reserves as I had are exhausted. Somehow, I have managed to ensure that my rent (currently around $540 monthly) is paid until 15 February and my medical aid (around $340 monthly, plus $150 co-payments for medications monthly) is paid up until the end of January. Electricity (around $50 per month) will not last that long, I can no longer afford the medications on which my immediate survival depends, and I am currently unable to replenish my stock of medication which is crucial to my survival. Thus far, I've been able to afford food, but that will also be beyond my means soon enough. My ability to keep in touch with anyone -- partly through telephony and largely through the internet (around $90 per month) -- will also come to an end, as matters stand, at around the end of the month. There are other routine expenses due at month end, not counting food: in order to get through the month turn and to buy more time to try to find a place within the state old age care system requires something of the order of $1500, which appals me. What looms is loss of all the requisites for survival and street-homelessness without safety-nets which my body cannot possibly weather. I have been trying to secure admission to a state old-age facility, but processes are often time-consuming and complex, and not being mobile or indeed having means to get transport or the sheer energy to run around to obtain affidavits, statements and other required documentation -- very modest efforts trigger angina attacks, for which I take tablets which often provide symptomatic relief (which I will not be able to afford when my current supply runs out) -- makes it impossible for me to get things together before time runs out as matters now stand. Even were I to be admitted to a home, access to medications and most medical treatment would probably be at an end; but what I seek is to be able to die in a bed (ideally my own) with the possibility of some palliative care and with such dignity and comfort as is possible.
My priority is to be in a position to buy more time to try to find a solution involving a state institution or some other solution. This is the most pressing need in the short-term. Sustainability is quite another issue: as far as I know, there are no housing associations here for which I would be eligible, and I need to be admitted to a state institution. This will not address the medical issues on the whole, but might at least afford me a dignified end. A larger issue which I believe that the activist community needs to tackle in the longer term "“ probably well beyond my life-time "“ is to look at ways, as a matter of urgency, in which activists in circumstances like mine, where commitment to activism and unanticipated illness take toll can be afforded help and support. I am neither the first nor the last activist to be in these straits and believe that this needs to involve approaches to international institutions, states and international donors and will require the setting up of a support-system. Our issue "“ intersex "“ is being taken up both at the level of states and at the international level, and I believe that safety-nets can be put in place for activists though it will require much lobbying, time and patience.
As far as the mechanics for receipt of funds is concerned, I have an account the details of which are known to Mani. Currency regulations on South Africa prohibit receipt of funds from a PayPal account based outside South Africa, and efforts on my part to set up a South African PayPal account failed for reasons even PayPal could not explain. I assume that there is no impediment to the establishment of a website and transferring funds from there to my account; but PayPal as a mechanism is to be avoided.
A possibility: for a long time, I have wanted to write memoirs. Sitting at the computer and bashing more than a couple of pages out is not something I can do anymore, but were I able to record and to have someone transcribe, it would be do-able. On this scenario, I would hope to produce an outline and sample chapter material, in order to try to secure a contract to write the memoirs. It is not simple: publishers in the USA tend not to be willing to look at manuscripts submitted directly: one needs to have a literary agent who serves as an intermediary. In the event that I can survive for long enough, this could perhaps yield sustainability.
In summary: my immediate need is to get through the coming month-turn and as much longer as is feasible. Questions about sustainability are relevant only if this can be achieved. For the longer term, we need to think about seeking to get a support-system in place for intersex activists who find themselves in similar circumstances, and this will require more than the private resources of members of our intersex activist community and investment of energy, time and patience. This longer-term project would be unlikely to benefit me personally: it would be a matter of legacy and a project and resource for all of us.
All of this is complicated, and it embarrasses me to make these requests.
With all my love
Sally
Organizer
Mani Mitchell
Organizer
