Doctors, haters or churches: Who chooses for you?

I have always been “pro-choice” if I had to check a box. Not because I like abortion. I hate abortion. I had a “spontaneous abortion,” otherwise known as a miscarriage, that ended my hopes of having biological children and it is still painful fifteen years later. Desperate to have a family, I adopted two children, unwanted infants who might have been aborted but weren’t.

So, when asked, I’ve always said “I’m anti-back-alley-abortion.” I am for women having the choice, not because I think it is always justified and “for the best,” but because the alternative isn’t life. It’s more death. I always figured that's just the realistic, non-ideological way to go at the issue.

Photo of a bicycle at a high desert V fork in a dirt road - Creative Commons image by Gutifoll via Flickr.com

But a recent experience has given me a little different perspective.

It started six months ago, when I received a surprise diagnosis of diabetes, despite being considered a “health nut” by most of my friends. I ate meat about once a week, carefully rationed sweets, halved the sugar in recipes, never drank alcohol, exercised as a matter of course, spurned packaged foods and fast food, and ate lots of veggies and beans.

Because I am already visually impaired and diabetes threatens eyesight in the best of them, I was immediately terrified. I spent about four days wallowing in depression. Then I took the bull by the horns. It’s just how I do things.

First, I cut out all sweets and white flour. The diagnosis did explain a few things. I had been chronically tired for a couple of years and my immune system was tanking. My previous doctor had ignored the problems and treated only immediate illness. I got a blood sugar monitor and swore to “be good.”

But when I ate a bowl of beans or drank a swallow of carrot juice I was overwhelmed with dizziness and ended up needing a nap. Even complex carbohydrates were causing havoc and high blood sugars. I hadn’t been put on heavy medications yet, but the writing was on the wall. So, I dove into a couple of weeks of intensive research.

And as it turns out, I’m not the only one. Yes, there are a lot of people who become diabetic because of poor diet and little exercise. But there are also plenty of physically active vegetarians and vegans who become diabetic. And yet, “low fat, plant based diet” is still the unwavering advice given to all of them.

Studies comparing plant-based, low-fat diets versus low-carbohydrate, moderate-fat diets show that the latter is demonstratively better at lowering blood sugar and averting the problems of diabetes. Some doctors, especially in larger cities and those connected with research institutions, are catching on, and in many places recommendations for diabetics have changed dramatically.

I joined a tough-love online support group that schooled me on a low-carb, whole foods diet for reversing diabetes. Yes, it is technically ketogenic but modified in several respects to better suit diabetics.

And then the magic happened. After a week of rough transitional symptoms, I suddenly felt better than I had in fifteen years. I had energy! I could hike and exercise with ease. Various inflammatory conditions that I had though were just part of me—my severe menstrual cramps, the weird bumps on my arms, etc.—went away for the first time ever. And I lost the unhealthy weight I’d been carrying around.

It seemed like a miracle. Sure, the diet is a bit of a pain in our society, which isn’t set up for it. I have to carry my own food around and pretty much can’t eat out or use most packaged foods. But it isn’t miserable, by any means.

“Focus on flavor!” my support group advised. And I did. I found flavorful, pleasant things to eat that fit the diet. I no longer eat bland, unpleasant things or finish my kids’ leftovers just because I don’t believe in wasting. I eat only what I need and want.

I get a bit hungry before meals and never feel totally stuffed, when staying within the limits of this modified diabetic diet. But I also never have to eat a bowl of beans that doesn’t taste good to me just because I think it’s “healthy.”

I eat no sugar and only moderate amounts of sugar-free sweeteners. As a result, things like raw unsweetened peanut butter taste like a sweet treat to my adapted tastebuds.

But given that diabetes is a serious illness and the diet can cause electrolyte imbalance and even rapid weight loss for some, it is recommended that one proceed under a doctor’s supervision. So, I tried talking to my doctor about it. And hit a brick wall.

She insisted that I was “doing diabetes wrong” and that the proper course for me was to accept somewhat high blood-sugar levels and the slow health decline of “controlled diabetes.” I would never get better or feel good again, but medication would help to prolong my sight and my life somewhat. She prescribed medications with horrible side effects even though my health was dramatically improving. I refused to take them. She became hostile and refused to order the necessary lab tests to keep my protocol safe.

So, I switched to a different doctor, a process that took months. In the meantime, I saw a dietician who told me she couldn't “officially condone” my diet, given the regulations she worked under, “but it’s hard to argue with results.” Now, my long-term blood glucose tests claim I am no longer diabetic. But if I deviate from my diabetic-adapted diet my blood sugar skyrockets again, showing that the testresults only measured my good self-discipline, rather than the actual underlying condition.

The new doctor, however, had clearly talked to the old doctor and came on hostile and rude. The nurse was polite initially and then after going out of the room with the doctor, she was also hostile and thorny when she returned. This doctor also refused to do the needed monitoring tests and declared that I would come to regret not following their advice to return to my mostly vegetarian, low-fat diet, which had led me to diabetes in the first place.

Pizza-baked zucchini that turns out to be a very healthy choice - Creative Commons image by LuckyNessa via Flickr.com

Many rural or general practice doctors are still using the same diabetes treatments advised fifty years ago, and I couldn’t find a doctor in my local area who would even consider the efficacy of the low-carb diet that had given me my health back. Finally, I found a doctor who is open to the more recent research and who will take my insurance… in another state, over some high mountain passes, more than 120 miles away.

That was about when the Supreme Court leak happened, and a light-bulb went on in my brain. So, this is what “making decisions about your own body” means. This must be a bit what it feels like to be told that, “No, even though you might die, you can’t have this particular medical care because we don’t think it’s right.” Maybe it’s also how trans folks feel when trying to get transition care.

I’m this person facing a life-threatening health problem. I find a solution that works. I feel better. With the proper health care, I can conquer this condition. I can live again and there is no particular, studied, documented reason why my choice is bad. And yet, I’m told “no,” again and again, treated with hostility and discourtesy. I am forced to travel across state lines to get health care.

So, I’ve got to give some respect to those who have campaigned on reproductive rights and even on trans rights. Because there’s a part of it I get now that I didn’t get before this moment when something like that came and bit me too.

I have more reason to check that “pro-choice” box now. And I see that it is actually aptly named. It isn’t just about being against back alley abortion. It’s about the whole concept of people having the final say over their bodies and their health. Doctors should advise, yes. But they should also stay up-to-date as their field changes. When an individual is different from others, they must treat the individual, not the statistics.

And in the end, when a person makes a choice for their health and body, after listening to all the advice and considering all the factors, they must be treated with respect and given the care appropriate to that choice, even if the doctor doesn’t entirely understand. We can’t choose for someone else and there is much more under the sun than any of us can know with certainty.

From the other side of a health choice that went against the grain, I’m here to tell you to listen to your body. Follow what works for your body—not what is fashionable or intriguing or trendy or “natural” or feels good in the moment—but what gives your body sustained strength and health. Pay attention to that and find health care providers who do as well.

I just hiked up a mountain and back and felt great while doing it, after years of foot and leg problems, unexplained weight gain, difficulty exercising, chronic fatigue and other symptoms made me think I would never be able to hike again. Anything that makes a body get that much better is a wise choice.

I'll stand with you: Equal access to health care for LGBTQ parents

Last month, the Spanish government announced that restrictions barring lesbians, singles and couples in which one member is transgender from fertility treatments under public health insurance programs have been rescinded. Although for most people even in Spain that news may herald only a minor change, I know from experience that for those it does affect personally, it is life changing and fraught with powerful emotions. 

A Spanish gentleman posted an article about the announcement to an American progressive group I frequent. Instead of the passing support I would expect from progressives, the post was attacked by some members of the progressive group, ostensibly because some people objected to fertility treatments in general. They made no overt mention of the LGBTQ rights aspect of the new law, but simply opposed it because it constituted an expansion of medical fertility treatments, which they see as unethical.

I was confused at first. I can understand that some extreme religious types might object to treatments like IVF as "playing god" or something of the like. But I couldn't fathom what progressives would find wrong with it. 

Creative Commons image by Niklas Montelius

Adoption, apparently.

The naysayers were convinced that those who can't otherwise have children are selfish to pursue IVF. They should adopt "the numerous children waiting in orphanages."

The terms of shame employed against transgender people and lesbians who pursue fertility treatments were "selfish," "unethical" and even "stupid." These "progressives" hadn't voiced a problem with fertility treatments for straight people, married couples or for the wealthy who can afford them without insurance. But they felt some people should "just adopt."

The tirade of shame for people struggling with infertility brought it all back.

I woke up disoriented and pinned on my back in a dark room. Tubes and wires were attached to me from either side. I couldn't sit up or even roll over, so I couldn't see anything except distant lights and the lumps of people lying on beds on either side of me. The sound of a steady electronic beeping was interspersed with shrieking laughter.

Vomit rose in my throat and I fought it back. It would be terrible to throw up while immobilized on my back. Slowly I pieced together what had happened. After my first harrowing IVF treatment was successful, I was pregnant for nine weeks. Then a routine check-up resulted in a frantic dash for the hospital. Something was wrong and I was told that I would have a miscarriage, one that would be dangerous and bloody if I didn't go in for surgery. I had gone, filled with grief and despair. 

And I woke up here in the dark and with no way to escape either the physical pain or the gaping loss.

I had been promised that it would be quick and I could go home with my husband afterward. But instead I was in pinned down, it appeared to be night and my husband was gone.

The pain came to me slowly. Dull pain in my womb and sharp pain in my throat. Finally, the shrieking laughter materialized into a gaggle of night nurses, barely old enough to be out of high school, from what I could tell, let alone nursing school. They told me I was in the ICU. Something had gone wrong.

Well, more wrong than it already had been. So I was stuck there, and no, they wouldn't give me anything for the pain.

I survived that night, the longest and worst hours of my life so far (let it stay that way, please). And it was only the beginning of the years of misery and despair in which I fought the monster of infertility because my body and soul needed a child, needed more than just me and my husband and my distant childhood family as "family." 

All in all, I spent six years in infertility, three of them in various stages of IVF. They were some of the loneliest and most painful years of my life. I was geographically cut off from my family and most of my close friends. When I did visit family and friends and made any mention of the all-consuming medical struggle my husband and I were undergoing, I was often met with silence and quick changes of topic. While I could think of nothing else, most people, unsurprisingly, had a lot of other things on their minds.

Never having thought much about it before it happened to me, I was surprised to learn that the topic of infertility makes most people very uncomfortable. It is a medical issue and the subject of genitalia seems too close for easy conversation. Infertility is a misfortune and it may make those who didn't struggle with it feel inexplicably guilty.

But more than any of that, I discovered, many people who have never been faced with the problem themselves feel that those who can't easily have children should do their part to mitigate the human population surplus by gracefully accepting their fate. Someone has to make the sacrifice after all and it's easier to contemplate if that someone is someone else.

To make it even lonelier, IVF is not as simple and painless as it is often described in the media. It is a long and arduous process involving hormone therapies that cause exhaustion and often debilitating mood swings, self-inflicted injections, followed by surgery, extremely precise schedules and many trips to distant medical clinics.

Even when it is "covered" by insurance in countries with universal health care the co-pays are steep and where it isn't covered by insurance tales of mortgages and eventually lost homes are frighteningly normal. Finally, IVF and other fertility treatments often entail enduring exaggerated symptoms of early pregnancy and then miscarriage... repeatedly. 

And that says nothing about the wrenching emotional and psychological process of desperate hope, almost always followed by at least a few devastating losses. 

In some places there are support groups for those undergoing these difficult experiences, but in our area there wasn't anything like that. That made the discomfort of my friends and family around the topic hard to bear, even though I knew that my focus on IVF verged on obsession. I tried not to go on about it, but I couldn't help thinking about it every waking moment.

Even among those who were also struggling with infertility I found a lot of silence and reticence to share. I knew three other couples dealing with infertility at the same time. But two of them found the topic too painful and private and wouldn't either talk about it themselves or listen to my struggles. The one couple I could talk to lived several hours away and we saw them rarely but gladly. 

Their conversation and mutually supportive hugs were a light in a long and painful darkness. The one topic that these friends wouldn't discuss was the diagnosis of their infertility. It's a sensitive subject for many, so my husband and I didn't press them. But one day over lunch at our house, my friend--who had been my colleague as well for five years--turned to me and revealed the truth. One half of the couple was transgender, making normal procreation impossible. 

My friends struggled under the same conditions of IVF that my husband and I did, the same forced silence, the same pain and fear and loss. And to add to that they faced the warranted anxiety that this hidden fact might bring down harsh judgment on them, even from those people who shared their struggle.

I will admit that I was astounded by the revelation. Transgender identity was another thing I had never spent much time thinking about or had any close experience with. My friends were so utterly normal that they broke all the stereotypes I had acquired from the media with that simple declaration. And once all secrets were on the table, our friendship was closer than ever.

My husband and I eventually lost that struggle to have a biological child, though our friends succeeded. We went on to adopt children from a local orphanage. The people engaged in shaming others for struggling against infertility might well have been gratified by us.

But they clearly don't know the reality of adoption in today's world. "The numerous children" waiting to be adopted in the United States where those voices hailed from are either not legally cleared for adoption or they are overwhelmingly older or carry with them costly medical issues. 

I would love for all children without families to be adopted but only into families prepared for them. Older children in the adoption system invariably have complex psychological and emotional needs. People battling their own medical problems and deep losses of dead babies are not the ideal candidates to provide the unconditional nurturing and rock-solid safe homes that those children need and deserve. Such families are also often not equipped to deal with children with extensive medical needs.

Pursuing fertility treatments instead of adoption is neither selfish nor unethical in any other way. In fact, if you do adopt, as my husband and I did, there will be those who will point accusing fingers at you and scream those same words of shame because you adopted.

Just as my husband and I tried to do the right thing in seeking medical help for our difficulties, we made every effort to navigate the adoption system ethically. We went through official channels and waited patiently to be assigned a child in need. We did not pay massive amounts of money to be able to make the choices ourselves. This is no doubt what the shamers and blamers think they would support. 

In the end, we adopted two children--one with complex disabilities and one who came to us after being drugged and neglected in a poorly run orphanage for ten months, who screamed in terror almost without ceasing for the first year. It has been and continues to be a rugged road to family. And yet, there are those who would shame us still. 

Our children needed homes and families primarily because of structural racism and discrimination in the country where we live. Neither of them were true orphans with dead parents. Almost none in the adoption system are.

They came from families facing a vicious system of employment, educational and housing discrimination, who then could not care for their child because of desperate circumstances. Those families sent their children into the adoption system in the hope that their loss and agony might result in their children having a better future. And so, finally we built our family on the ashes left by structural racism and egregious social injustice. Such is our supposedly morally superior path. 

But the fact was that these children were alone and abused in a terrible situation. Not taking them would not have resulted in the salvation of their birth families or communities. And after picking up the shards of our lives shattered by infertility, we felt we had the strength to do this. 

Those who never faced such choices, such pain or deep despair, will judge. But our friends who went through IVF with us, just invite us to stay and our kids build forts together in the construction materials for their new house.

Oddly enough, another friend, this time a single lesbian woman also went through IVF though not at the same time as us. And of the many friends who have appeared and drifted away, these two families are two that stayed in our circle without judgment and linked to us by bonds of solidarity and hope.

That is why I didn't let the issue lie when the tirade broke out shaming transgender people and lesbians in distant Spain. Some people did ask me why I went to the mat over that obscure issue so fiercely. I am not transgender or lesbian and I adopted children. The comments were theoretically praising me. 

But there is one point of honor and ethics that I hold higher than any other. I will always stand up for those who stood by me in hard times. If there is ever need, LGBTQ people will not stand alone, not in this or in any other defense of equal rights.