Becoming a Caregiver at 40 instead of at 30 years of Age

July 17, 2014 by survivor

Young-male-spouse-caregiverBeing a young, male, spouse caregiver of an intersex patient is rare. There is also a lot of secrecy and stigma associated with it. While any one of the individual categories of being a young caregiver or a male caregiver or a spouse caregiver is celebrated, it seems because of the medical condition of intersex, being a young, male, spouse caregiver of intersex has “stigma” or “intimidation” or “hate” associated with it. So what is the message? One should NOT be in a relationship with an intersex spouse? The intent here is to educate and spread awareness and help other young caregivers or male caregivers or spouse caregivers or intersex caregivers and have a community to share with. Being older has benefits. More exposure in life and how the world works for good or bad. How would one approach caregiving differently at 40 years of age Vs. 30 years of age?

1) Medical Science – Do not believe everything they say. While the doctors are very intelligent and smart people, they are also humans just like their patients and caregivers and may have biases. Rather than treating them as an authority figure, seek their knowledge. Understand that some, not all, doctors may have vested interests in a medical condition which are contradictory to you as a caregiver. Caregivers of Alzheimer’s from 1970s and 1980s can attest to this.

2) Bioethics – If the medical community sites “privacy” to hide the truth about the medical treatment of your spouse, report it to the hospital administrator. Seek to speak to a medical counselor who is advocating for caregiver rights.  As a spouse, you have the right to know the truth just as much as the patient, your spouse.

3) Medical Records – If the medical community chooses to deliberately falsify a medical record, report it to the hospital administrator. If the medical procedure is valid then why hide/falsify it?

4) Insurance fraud – If your insurance is paying for your spouse’s medical treatment, get proper medical records. You could be held liable for insurance fraud along with the hospital and doctors for them falsifying medical records.

5) Sharing – Despite the level of trauma and secrecy, it is OK to share the facts of the medical condition and its effects on you with a confidant. It is not being dishonest or disrespectful to your patient spouse. You as a caregiver also have needs which can only be dealt with if the truth is known. Having a healthy support group and caregiver respite are important especially when dealing with a traumatic medical condition.

6) Young caregiver or Male caregiver or Spouse caregiver – If you fit into either one of these categories, you are a minority. Like other minorities, you will have to fight and demand for your rights. You have a choice to either care for your loved one AND fight for your rights as a caregiver or leave your loved one.

7) Children – Wait till the trauma of the medical condition and treatment has subsided before having children. At 30, you are hopeful and immature and in a hurry to have children without realizing the severity and trauma of the medical treatment.

8) Infertility – If after you have dealt with the medical treatment and then have to deal with infertility, understand the laws about infertility first. If you are an international infertile couple, understand the applicable laws first.

9) Trailblazing – In 2014, infertility laws especially when it comes to treatments like in vitro fertilization (IVF) are LACKING and there is not enough precedence. Especially, if you are dealing with IVF/surrogacy across international boundaries and then immigration laws come into play. Most countries require a “biological link” with the child to be allowed into the country if the child is born outside the country. In medical treatments like in vitro fertilization (IVF) with availability of anonymous sperm donor, egg donor, and surrogate womb, establishing biological link with the child is VERY CRITICAL. Do NOT falsify records, you are hurting the innocent child’s future.

10) Compassion – Understand that while a caregiver or a fertile spouse in an infertile relationship shows a lot of compassion by NOT leaving the relationship in sickness and in health, NO ONE CARES. You have to look out for yourself regardless of all the “sensitivity noise” in the community. As a young caregiver, you have the rest of your life to live. Do not fall victim to the system’s inefficiencies and make it a traumatic life for you. You have a great future ahead!!!!

Intersex Awareness Day for Families

October 27, 2013 by survivor

October 26 is intersex awareness day. What is intersex? Here is the medical definition of being intersex. What is the legal definition of intersex awareness dayintersex? Regardless of our race, color, birth, gender, caste, religion, sexual orientation, we all have to deal with the laws. Depending on each person’s circumstances, to provide a “complete life”, one needs to understand all definitions pertaining to them. Sometimes lack of laws destroys lives like no other crimes can. As a society, we have a history with social justice issues like gay rights, interracial marriage rights, civil rights, women rights, and so on. Do intersex families have rights? If intersex causes infertility and an intersex family opts for IVF to have children, do IVF families have rights? Do IVF children have rights and deserve compassion also? While October 26 is about intersex awareness day, let us make it complete and also include the issues facing an intersex family which is reproductive rights and IVF children rights and immigration rights. Unless, we as a society think that intersex people do not deserve an equal opportunity to have a family with a spouse and children? Or we as a society think that a person who dares to have a family with an intersex person has committed such a grievous crime that not only he but also his innocent IVF children should be punished by splitting them? With gay rights movement on the upswing, will there be basic human rights if not equal rights for intersex families with IVF children? With the turn of the 20th century, there is lot of continued animosity against an immigrant, IVF father and a spouse of intersex resulting in a thousand lies, defamation and stereotyping. Our motivation is to save IVF children and get basic rights if not equal for IVF children and families of today who may also become IVF parents of tomorrow, whats your motivation for the continued animosity, secrecy and abuse? Like water, truth always finds a way – education and awareness is the right path while secrecy and lies creates only more victims including innocent children – IVF or intersex.

LGBT refers to more of a sexual orientation of a person and should be respected. As per IGLHRC, they added the “I” for intersex in LGBTI to include their human rights also although intersex is not a direct reference to sexual orientation. For most people, due to lack of awareness, they may not discern the difference between “sex” and “gender” at first shot. I was like that. It takes a few discussions and some interest in understanding the difference between “sex” and “gender”. It is ironic that laws do not make the same distinction and as a result there are more inadvertent victims. Asian countries like India, Nepal, Pakistan have long recognized the “third gender” legally and moved away from the colonial British definition of “binary gender”. While human rights may not be great in these countries overall, the fact that they give an opportunity to the “third gender” to be honest and live truthfully is liberating. Maybe in this one area, the west can learn something from the east. Australia started offering the “third gender” as a legal option in 2011 followed by New Zealand. In 2013, Germany will become the first country in Europe to offer the “third gender” as a legal option. Progressive countries like US, UK, Canada and so on are waiting but it is inevitable just like “same-sex” marriage rights eventually have to be granted.

Two things –

1) if intersex people are either men or women, then why a legal “third gender”? Are governments like India, Nepal, Australia, New Zealand, Germany, and so on who make laws wrong or are they doing the right thing?

2) By recognizing the “third gender” legally, is the next logical step to address other issues that specifically impacts intersex families who have lived in secrecy and in lies for years and the issues have never been addressed?

A spouse of a gay person is also gay, a spouse of a lesbian person is also lesbian meaning the laws or “lack of laws” impact both individuals the same way. Do the lack of laws for intersex marriages also affect both individuals in an intersex marriage the same way? If an intersex person wants to recognize themselves as a “male”, or a “female” or a “third gender”, it is their choice. However, having no laws for addressing the specific issues of “third gender” is victimizing people. If there are laws for “male”, “female”, then why not equal laws for “third gender”? Do a spouse of intersex and children of an intersex marriage deserve equal rights? Or are their crimes so heinous in supporting an intersex person that they should be ostracized and silenced? Ironically, thats been the traditional way to deal with intersex for centuries and only now in the 21st century, we have truth and transparency. Do the spouse of intersex and children of an intersex marriage have to wait a few more centuries and be victimized before getting basic human rights, if not equal?

A spouse of intersex is not gay but from a legal perspective is treated as “gay” and the anti-gay laws are applicable to a spouse of intersex and his children. We look forward to a time when we will have equal rights for IVF children and families, equal intersex rights, and equal caregiver rights. More importantly, every human will be allowed to live with the truth and freely instead of in secrecy and lies – it is every individual’s basic human right (if not equal) regardless of their religion, race, color, caste, sexual orientation, gender, birth type (natural or IVF) – or is it?

Becoming a Cancer Caregiver

July 31, 2013 by survivor

A guest post by a fellow spouse caregiver. Educating and spreading awareness.make a difference

There is one day in my life that I will never forget: the day that my wife received a Mesothelioma diagnosis from her doctor. The date was November 21st in 2005, and on that particular day, I became the caregiver for someone who has cancer. Was I prepared for the job? Not the least bit. Just three months before her diagnosis, we had been excited over the birth of our daughter, Lily. We thought the month of November would be a celebratory time because the holidays were approaching, but we thought very wrong.

Becoming a caregiver was unexpected but it was necessary from the moment my wife received her mesothelioma diagnosis. The doctor provided us with more information on the cancer. He also let both of us know about the types of treatment Heather could receive. At the time, Heather was not up for making decision. I ultimately decided that we would travel to Boston to see Dr. David Sugarbaker, a doctor who specializes in helping patients with this specific form of cancer. This was the first decision I would have to help make as Heather’s caregiver but it surely was not the last.

The months after Heather’s diagnosis were probably the most challenging months of my life. Before Heather had been diagnosed, she and I both worked full-time positions. This simply was not manageable after the diagnosis, and Heather had to quit her job. I, on the other hand, began working part-time so that I could help care for Heather and Lily. I wanted to be there for all of Heather’s appointments. The whole ordeal was tiring and challenging, but I managed. There were times when I worried my wife would pass away and that I would be left without her to try and raise Lily all alone. There were times when I would break down and cry my eyes out and wish it would all go away. Of course, I never did this in front of Heather. I always put on a strong front on for her so that she could stay strong too.
One good thing about this terrifying journey was the support we received from so many kindhearted people. Heather and I received support from our family and friends, along with people we did not even know well. People were helping us in many different ways. It was during this time that I learned the importance of accepting help that is being offered. I tend to be a stubborn, independent person, and at first I was reluctant to accept these generous offers.  However, I quickly learned that there is no room for pride when a loved one’s life is on the line.  So many people were offering a helping hand and it really made a difference when I started to accept their offers.

I can honestly say that becoming a caregiver for a person with cancer is not the easiest or simplest task. In fact, it is quite a challenge. It is, however, something that makes you stronger. It was through my care giving experience that I learned how important it is to take advantage of the time that you have. My life was not back to normal in a few days or months. In fact, it took years before things went back to being remotely close to how they were. During that period of time, Heather went through with the mesothelioma surgery in Boston and she also had chemotherapy and radiation. The odds may have been stacked against her but she did survive and is now completely free of cancer to this day, over seven years later.

Through these challenging events, I decided to pursue an opportunity to further my education and go back to school. I got my degree in Information Technology. I was attending school, caring for Heather and Lily, and also working. I managed to get it all done, graduating from school with honors and speaking at my graduation.  I spoke about my family’s struggles and the lessons that got us through. Throughout this journey, I have learned the importance of staying hopeful and always believing in yourself.  Heather and Lily cheered me on from the audience, and that was the greatest reward of all.

Author Bio: Cameron Von St. James is the husband of mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36.  A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease.  They hope that by sharing their story, they can bring hope and inspiration to people facing any sort of illness or disability, and the caregivers who support them. Heather and Cameron live in Roseville, MN with their daughter Lily, who is now 7.

Loneliness and Secrecy for a Caregiver

June 26, 2013 by survivor

Loneliness is the worst disease, secrecy is worse than that.

Imagine there has been a nuclear holocaust and you are the last survivor for as far as your eyes can see. Are you happy to be alive and that you Caregiver-One-Daysurvived? There is every possibility that you are not ALONE and there are other survivors too, maybe in the neighbor city, or state, or country, or continent. You DON’T KNOW. Roads are gone, infrastructure is gone, no food, no water, your natural survival instincts kick in, and as a social animal, a human being, you start looking for other survivors like you. You start walking but cautiously as there is contaminated food and water around but are afraid of exhaustion and so take every step measuredly. Maybe you shout for help hoping someone listens, maybe you cry. Are you happy you survived? Is loneliness settling in? And the worst part is you have no one to share with…to keep you chugging. What is worse – the loneliness or the fact no one around to share with or the fact that you survived? Every human life is dear and worth celebrating, so what makes it worse?

The Deafening Silence

For a family caregiver, it is not exactly a nuclear holocaust but the secrecy and lying creates situations where its a vicious circle of no hope. Every family caregiver needs help and support, we are NOT superheroes. One can only get help and support if they are allowed to share with someone. If they are allowed to reach out to someone. No one needs to walk around with help written on their forehead but should have access to an environment where they can share with a family member or close friend or a professional or someone. When the patient DEMANDS secrecy and lies, how is that helping anyone? If the medical community continues to perform unnecessary surgeries and then lie about it, how is that helping? If these intersex surgeries are considered as torture for patients, is it torture for a family caregiver living in forced silence and secrecy? Is the loneliness and secrecy a double whammy of torture?

If paid caregivers have protection under law, why is there no EQUAL protection under law as a family caregiver? Somehow, there is a disincentive to show love and compassion. Is that the message we want to teach our children? Is there anything wrong with this picture? While morals and ethics CANNOT be regulated, can prevailing laws be enforced? Or is that too much to ask?

Caregiver Guilt

As a human being, we all have the RIGHT to feel the way we want. Or is that also regulated? As a family caregiver of intersex, it is very lonely. The secrecy creates a whole another set of issues as one cannot get the help and support they need as a caregiver. And its a vicious circle. Because of the secrecy and loneliness, it is very hard to find others like you. As a result, there is very little hope of gathering a “critical mass” big enough to have the concerns addressed. Imagine a group of caregivers for breast cancer or leukemia or Alzheimer or one of several other traumatic conditions and think about all the support groups, resources, help and support they get. And think about similar groups maybe 10 or 20 or 30 years ago? They were practically non-existent but through advocacy and truth, they have made long strides today. The term, “caregiver” itself is a relatively new term although mothers have been caregivers since humanity existed. The point is without having the freedom to express and share the truth with others, one cannot organize a group big enough to be heard. And by DROWNING the voice of a caregiver, one does NOT WIN but instead perpetuates the abuse of silence and secrecy. 

Break the shackles to secrecy and loneliness. Be honest, be truthful and find the help and support you deserve and need. Its a birthright of every caregiver.

Vindication As A Caregiver

March 6, 2013 by survivor

Dual MinoritiesRecently, the UN released a statement by the UN Special Rappoteur on Torture (SRT) for Human Rights calling for a STOP to “normalizing surgeries” in intersex people as a gross violation of their human rights. As a spouse caregiver of intersex , this is a demand we have made on deaf ears for several years including the UN, WHO, American Medical Association (AMA), Texas Medical Board (TMB) among others including Heads of Gender Medicine Teams at various reputed hospitals and bioethics teams at various reputed hospitals. While they may NOT listen to us maybe because as a spouse caregiver we have NO medical basis to challenge a decades old concealment based treatment approach. As spouse caregivers of intersex, we are simply working on first-hand experience and instinct as a human rights crusader that what is happening is WRONG. The decisions of the medical community is having a perilious effect on intersex families. Have they considered ALL involved and deliberated on ALL the implications of the surgery and the hormonal treatment and its effects? Or are they playing russian roulette harming patient and caregiver safety including innocent children? In a first-of-its-kind case, a law suit was filed recently where a sex assignment surgery was performed on an intersex infant child without their consent. The hearts and minds of these very reputable medical professionals and institutions is in the RIGHT place but the surgery is NOT. It is interesting that a group on TORTURE released this statement for intersex people, what about TORTURE against the unsuspecting, innocent victims of spouse caregivers of intersex? If a conversion therapy from gay-to-straight is wrong and is being called for a ban, what about forced normalization surgery in intersex?

As a spouse caregiver of intersex, we feel vindicated by the statement made by the UN Human Rights Organization.

Caregiver Rights

Intersex Gay Lesbian Rights

By denying “normalization surgery”, the medical community claimed it NEVER happened. Thus as a caregiver we are shunned and forced into silence much like the caregivers of Alzheimers in the 1970s and early 1980s until education and spreading awareness began. Because of our forced silence, the issues that affect caregivers of intersex are not even surfaced let alone provide treatment or alternates because you see, the “normalization surgery” NEVER happened.  So how can there be an existence of a caregiver for a surgery that NEVER occurred? How can there be effects of the hormonal treatment since the surgery NEVER occurred? We hope this is a new DAWN of TRUTH and moving forward. Secrecy and lies are a FAILED approach and let us hope the worthy and intelligent medical professionals see it that way too. Just because we have been doing something WRONG for decades does not justify our behavior to continue to do so. TRUTH, education and spreading awareness is the right answer. Secrecy and stigma are worse than the medical condition itself. Just like water, TRUTH always finds a way to get out.

TRUTH – The Right Way Forward

Intersex diagnosis truthWe can understand the dilemma that medical professionals can be placed in when diagnosing someone with intersex. It further can complicate matters if the person is married. What are the privacy rights of the intersex person Vs the rights of a spouse caregiver? Should the TRUTH be shared with the spouse who is also a caregiver? What if the TRUTH is not shared and the health deteriorates? Has REAL, ethical medical treatment been provided by suppressing critical medical information? Is the secrecy and lies forcing the caregiver to turn into a patient themselves? The intersex person is also grappling with all the information as it is presented as a “medical emergency” and “risk of cancer”. For someone in their 20s to find out being at risk of cancer is very traumatic. Should the spouse caregiver stay in the marriage or leave like 83% of male spouses (as per report) who leave a marriage when the spouse is diagnosed with a major illness? If the spouse caregiver stays, should he be rewarded with TRUTH or with secrecy, lies and denial of the surgery and its effects?

Evidence-Based Medicine

Where is the scientific basis for having a “normalization surgery” in an adult during a marriage? I know of intersex people in their 60s and 70s who NEVER had the surgery but are living a healthy life with no major medical issues or cancer. Is the “medical emergency” created to justify the false behavior of decades or should scientific data and evidence-based medicine be the standard? It is better to have an inclusive approach with the spouse caregiver and use a more palliative based treatment like other traumatic conditions.

It IS a long road ahead. And when it comes to human rights, intersex rights, caregiver rights, they all have one thing in COMMON – TRUTH. Let us start with the TRUTH aided with honest education and see where it leads…it cannot be a distance FAR AWAY from the “right answer” as we all struggle to find the “right approach”.

Lessons of Being a Spouse Caregiver of Intersex

December 31, 2012 by survivor

There are several positives to be learnt in being a spouse caregiver of intersex.Equal Human Rights

1) Your innocent children suffer because you did not report the crimes and speak the truth out of threats and compassion. That does not mean the crimes did not occur. The perpetrators are free while the innocent children are getting the punishment. All the “do good one liners” come to a standstill because no one cares about the TRUTH or the gruesome plight of the innocent children. Instead of dying from this trauma, one lives to fight for justice and EQUAL RIGHTS.

2) As a spouse caregiver of intersex, one learns that intersex have  unequal rights starting with marriage rights and are infertile but yet do not have rights to have children. Until then, the life of a intersex was a “black box” to you.

3) As a spouse caregiver of intersex, one “inherits” the “unequal rights” by staying in a fraud marriage but the inequality is understood gradually as life progresses. One experiences FIRST HAND the life of secrecy, lies and fraud a intersex family has to live with just to get “equal”. Living a life of lies does no good and it is better to live with the truth and live freely.

4) As a spouse caregiver of intersex, one understands that it is very lonely. One cannot talk about the issues openly and freely and is forced to live in secrecy and with lies. This can CONSUME you and restrict one’s overall growth and well-being.

5) As a spouse caregiver of intersex, one experiences FIRST HAND the level of fraud, lies, and secrecy people in authority are willing to go through “out of compassion” for a intersex family but NOT for innocent IVF children. It is better to CHANGE the laws than to BREAK the laws. It is slower but does the society as a whole more good. And it is a better message for the children.

6) As a spouse caregiver of intersex, one realizes that the loneliness is for lifetime simply because there are not too many spouses of intersex (because marriage is illegal?) or they are living in secrecy like I was. Unlike a spouse caregiver of breast cancer patient or Alzheimer patient where there are people to share with in common, no such outlet exists for spouse caregivers of intersex. There are physical wounds including a numb hand to carry for a lifetime which constantly remind you of the pain and suffering.

7) As a spouse caregiver of intersex, one experiences FIRST HAND that scientific facts and TRUTH have NO BASIS in MEDICAL SCIENCE. Instead, the humans who practice MEDICAL SCIENCE work on emotions and any CHALLENGE to their decisions is like Galileo challenging the earth as the center of the universe concept. Little do they realize that TRUTH always prevails if not in our lifetime then later, it may take time but it will prevail.

8) As a spouse caregiver of intersex, one becomes a “FIRST-TIMER” for everything. First to have Sex Reassignment Surgery (SRS) during marriage. First to have an IVF child in India with “no legal mother” while living in the US with no proper laws for IVF/surrogacy and having to deal with different laws of two countries. First to be a PRIMARY CARE PROVIDER for both the intersex spouse and the IVF child but in SECRECY. First to have SPLIT innocent IVF siblings across two continents. First to have an abandoned IVF girl child in India who cannot go to the US to be united with her IVF brother because “no legal mother” available. First to…it gets overwhelming to be pioneering new ground everyday. One realizes that be THANKFUL you are not dead from all the trauma and your parents raised you right.

9) As a spouse caregiver of intersex, one experiences being intersex like no one else. Even parents of an intersex do not have to deal with infertility, a spouse does. UNEQUAL RIGHTS and UNEQUAL LAWS. I suppose I could have left the FRAUD marriage and the laws would have supported me. I suppose I could have reported the crimes and abuse. I suppose I could have left and not shared my child with an intersex person who is infertile and given the current laws, there is no other way a intersex person could have a child. It is BETTER to speak the TRUTH and get the LAWS changed rather than BREAK the laws. It is BETTER to speak the TRUTH and unite the innocent IVF siblings who have done no wrong yet are being given the punishment. As an IVF father, I deeply care about IVF children and IVF families concerns and issues and it is BETTER to advocate, educate and spread awareness.

10) Being an intersex is not the issue, it is a naturally occurring condition. But choosing to lie about it and committing crimes and forcing others to lie about it  is a HUMAN RIGHTS VIOLATION. I take great inspiration from other intersex people who are honest and living their life with great joy and passion. Truth and Honesty – what a LIBERATING feeling. I join other honest intersex people advocating and fighting to get equal intersex rights.

11) I could have been dead not once but several times because of the severe trauma, betrayal and suffering. Thanks to a great woman, my mother and my sister and my family who have saved me. But above all, my lovely daughter, who was just a few days old who saved me because if I died then who would raise her? All these women in my life have showed me the love, compassion and strength that only a woman knows how. Teaching me that the only way out is to speak the truth and silence only begets abuse, I suppose they would know a little about that being a woman.

I fight for the TRUTH and FACTS. If justice is based on TRUTH then the innocent children deserve justice. I fight to unite my IVF children but also raise the awareness in the process and get equal rights for IVF children and families. There are donors and surrogates in an IVF industry who need protection too. The IVF industry needs to delicately balance the equal rights of all – the infertile person, the biological parent, the donors, the surrogates and ABOVE ALL, the IVF CHILD.

I have learnt a lot more about life than I ever imagined. I have learnt that justice is NOT based on TRUTH and prevailing laws. That is NOT a message I want to teach my children because if that remains true when they are adults, they may opt NOT to have children through IVF – a technology that gave me TWO WONDERFUL AND BEAUTIFUL children.

Caregiver Coming Out Day

November 6, 2012 by survivor

caregiver survivorThere are so many “coming out days” nowadays that it is easy to lose track of them but each one is special and important in its own way. November is caregiver month and suppose a “Caregiver Coming Out Day” is in order.

Anyone who has been a caregiver can attest that the reason for becoming a family caregiver was purely coincidental and out of love. It is not for attention grabbing. So a “Coming Out Day” is not the same as trying to make a statement of who you are. If family caregivers started demanding pay for their services, it might just jump-start the economy with all the associated tax revenues or people may stop receiving care. No one knows because no one has a complete picture of what each family caregiver does. Most family caregivers do not publicize their personal issues, rather they voice concerns over “best place to get cheaper prescriptions” or “what does this symptom mean?” or some great doctors in the neighborhood and after forming a community, they may even trade food recipes or fantasy football games if they have the time. So why is a “coming out day needed?” Here are some reasons why coming out day for caregivers should be celebrated:

1) Sharing : Most family caregivers will agree that by sharing their caregiving role with someone, it makes their life much simpler. Having physical help and caregiver respite are good but lot of times just being able to share is a huge release. And it betters their overall health. Stress can cause health issues for caregivers.

2) Closet caregivers : By being a closet caregiver, no one is getting helped. The caregiver is shunning their own personal issues and health. And whatever knowledge they have gained about caregiving and the specific ailment of the patient is lost by NOT sharing with anyone. It does not help future patients of the same ailment nor the caregivers.

3) Fun : Most family caregivers are in the role because they love their family member, be it a parent or spouse or child or relative or sibling. It is important to remind both the patient and the caregiver the “fun” times they used to have together which made the love possible so that they can continue to enjoy a healthy patient-caregiver relationship.

4) Recognize : That caregiver also may have health issues. Instead of having a caregiver for a caregiver, it is better to recognize the caregiver as a patient too as appropriate. By allowing a platform/medium to share, hopefully the caregivers feel comfortable discussing the issue.

5) The Power of Many : By having a sharing and caring platform, more caregivers will benefit from the collective wisdom of each other. Which in turn also helps the patients about administering medications, effects of medications, doctor questions to organizing outings/events for them.

6) Encouragement and Inspiration : By family caregivers coming out, it will encourage others to do so as well and be an inspiration for all. It feels good to celebrate the love that human beings share be it as a patient-caregiver relationship. It makes life worth living.

As a fellow family caregiver, this is an open invitation to every other family caregiver to come out and join the conversation with us. This is an open forum. You will have lots of positive experiences. Whether you choose to go to local support groups, or online support groups, or social media, or so many other avenues, the important message is to interact with fellow family caregivers. We love our family caregivers and welcome you. You can view our mission statement and feel free to sign the petition supporting caregiver rights.


Infertility And AIS During A Marriage

October 5, 2012 by survivor

Gay (LGBT) Rights and Spouse of Intersex Rights

September 24, 2012 by survivor

Intersex Gay Lesbian RightsIs there a difference between gay rights or LGBT rights and spouse of intersex rights? One has to discuss the ground realities first. If you are not aware of intersex or what it is, intersex is a group of genetic conditions. One such intersex condition is Androgen Insensitivity Syndrome (AIS) that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. The intent here is to get equal LGBT rights and equal intersex rights. The “equal rights” is inevitable but just like interracial marriage or civil rights or apartheid, one has to fight for their rights. Any similarities or dissimilarities are highlighted from an analysis perspective to bring change in the social fabric and community. The words intersex and AIS are used interchangeably.

Anti-homosexuality laws ‘will in the future be seen as wrong as apartheid laws are now’ – Bishop Desmond Tutu

We may add [anti-intersex couple] laws as well

1) In a gay relationship, both members are genetically male. In an AIS relationship, both members are genetically male. This creates some specific situations in getting equal rights for all. As a spouse of intersex, one should have a right to know the facts of the medical condition rather than being lied to under the pretense of “privacy”. Are the human rights of the non-intersex spouse being violated? There is no “I” in infertility when one is married like in an intersex marriage, then why is there an “I” in treatment of intersex during marriage?

2) In a gay relationship, if a partner is fertile, only one male can opt for having a biological child. In an AIS relationship, the AIS person is infertile. So if the other partner is fertile, only that male can opt for having a biological child. This creates some specific situations about marital rights and child rights. If the child is born outside the US and if immigration laws are involved, the prevailing US immigration laws require a biological link to the child of the parent. Then what are the rights of the intersex parent, a non-biological parent? Can they legally bring a child born outside the US? Or is the message that intersex people should not have children despite options like adoption and fertility treatments?

3) In most countries in 2012, the prevailing laws associate a child’s primary care provider as a “mother”. In a relationship between two males, who is the “mother”? This is different in a lesbian relationship, a child would have a biological “mother” which can be used to their advantage using prevailing laws. We need laws specifically for child born to male without a legal “mother”. A case in point is where a gay couple had a child born through in vitro fertilization (IVF) and are no locked in a custody battle of the IVF children. If gay marriage were legal and therefore the resulting surrogacy to have a child by gay parents, would there be a legal case now? This case highlights the traumatic and difficult situations created because of LACK OF LAWS.

4) When a child is born in a gay or intersex relationship between two genetic males, which parent’s rights does the child inherit? Are both considered “father” or one is assigned as the “mother” based on biological relationship to the child? While laws on adoption have been in existence longer and are more mature, laws on fertility treatments like in vitro fertilization (IVF) and/or surrogacy are still evolving without a standardized international equivalence. With the cost of IVF/surrogacy high in western countries, lot of people opt for fertility treatments in Asian countries like Israel or India where costs are more affordable. Can IVF children be legally brought back to the western countries specifically if the children are of a relationship between two genetic males?

5) People can love each other without being married. Marriage is an important social and legal institution because it confers a lot of rights to the spouses.   With changes in the air across the world with more equal rights for LGBT, there is a lack of awareness about intersex and their rights. Should there be laws to make intersex marriages legal?

6) In a gay or lesbian relationship, both adults are aware of each other’s relationship preferences and the inherent lack of rights in 2012 for gays and lesbians. In an intersex relationship, the non-intersex spouse may not be aware of the condition until after the marriage and the inherent lack of rights for both intersex spouse and the non-intersex spouse.

7) Being gay or lesbian has probably been around for ages as a natural human emotion, however, secrecy and stigma have been associated and unfortunately still are although its changing. Being intersex is a genetic condition and is natural, however secrecy and stigma are associated with it. Unfortunately, there is lesser awareness and knowledge about intersex than gays or lesbians and therefore there is a heightened secrecy and lying including at institutional levels. Unknowing non-intersex spouses are forced to lie in the interest of helping someone compassionately to deal with being intersex. Instead it is better to have equal rights for intersex couples so they can be honest.

8) There is a “critical mass” of LGBT rights movement. There has been lot of success and laws are changing. As per NIH, 1 in 20000 births are AIS which would make the total population of AIS in the world at 350,000. While 1 in 2000 births are intersex which would make the total population of intersex at 3.5 million. Considerably, intersex as a group is a much smaller minority than LGBT. The non-intersex spouses of AIS or intersex are probably a far smaller minority as most intersex people report difficulty in long-term relationships and intimacy.

Is it right to give the rights of a minority while ignoring a smaller minority? We all know the right answer in our hearts which is to have equal rights for all. But we take a pragmatic approach and after working in the inefficiencies of “law-making”, we take what we can get which is NOT the same as EQUAL RIGHTS FOR ALL. Unfortunately, it is akin to solving world hunger. Everyone wants to help but no one knows how to solve it even though millions of tons of food from restaurants, homes, etc. goes to waste everyday meaning as a human race we have resources to feed every human on this earth but we still cannot.

The intent here is to highlight the ground realities facing intersex couples and their children. After the secrecy and stigma of being in an intersex relationship, trauma of dealing with infertility and lack of laws for intersex couples to have children legally, there is no need to continue the trauma. It is better to educate, spread awareness and ask for equal rights.

August Beginning As A Caregiver

August 1, 2012 by survivor

Caregiver BeginningIt’s a new month and it’s August. The sunshine feels just right. The wind feels just right. Why not have a august beginning as a caregiver? Regardless of where you are in your caregiver journey, whether you are currently caregiving, or cared for someone in the past, or you do not know it yet but you may become a caregiver soon. It is time to rejoice, let yourself go and feel good about yourself. Here are some great things I rediscovered recently with the help of my loved one.

1) Sunrise or Sunset – Whatever your calling, whatever you feel closer to, take your favorite person in the world along or go by yourself and enjoy a sunrise or your sunset depending on what your schedule permits.

2) Repeat – If you enjoyed your 2 minutes or 10 minutes or whatever time you could afford watching the sunrise or sunset, make it a habit to repeat.

3) Cold shower – Have a cold shower either before going for the sunrise or sunset or after. Apart from being very therapeutic, you will enjoy the rejuvenation. Depending on your schedule, take 2 minutes or 10 minutes of your time.

4) Breathe – Do a deep breathing exercise after the shower. Take your time and be patient. An average person cannot hold their breath more than 20-30 seconds. So if you take a few deep breaths, we are talking about 2-3 minutes at tops.

5) Walk – Take a walk inside the house or in the yard with bare feet while touching the ground. It is a very soothing feeling. If you are in Alaska or Antarctica or feel like you are, then walk indoors just for a bit.

6) Water – Have a BIG glass of water while feeling it go down your neck and till your stomach. Capture that moment as you feel all your senses at work.

Now you can get back to what you were doing. This is very doable. All these activities can take anywhere from 15 minutes to 30 minutes at most. That is time you deserve for yourself as a caregiver. Think about the patient. The better rejuvenated you are, the better care you can provide. Try to fit this into your schedule somehow. Maybe you have a friend who can watch the patient for 30 minutes or maybe if you have someone who comes over and gives the patient a bath or food. Try the routine and it will do wonders for you and the patient.

All the BEST and thanks for all you do as a caregiver.