Immune & Autoimmune Diseases

My Body Is Not A Battlefield

Our culture's way of speaking about chronic illness as a 'war' are reductive and self-destructive.

When I was first diagnosed with an autoimmune disease, I’d jokingly tell people that my body was attacking itself. I’d describe it was a ‘war’ my body was waging on itself, and on days where I woke up in a lot of pain, I’d text my best friend: “My body hates me today.”

The more I talked about my body that way, though, the more distant I felt from it. It was as if I was separating myself into two different beings—my body, and my self—and in my mind they were pitted against each other. I had made an enemy out of my own body.

How was that helping? As a poet and writer, I understand the power of words. But even so, I had fallen into a dangerous trap.

The Metaphors Of Illness

It is easy to get pulled into the metaphors used to describe illness in our society. Those living with a chronic conditions are described as ‘warriors.’ The medicines we use are said to ‘attack’ the disease, and we don’t live with a condition, we ‘fight it’. While these words are meant to evoke feelings of strength and fortitude, they also bring forward images of war and battle. They separate the person from the body, two warring entities.

But no one can separate themselves from their body, which means that no one can separate themselves from their illness. My illness lives in me; it’s as much part of my body as I am. So when we say we are ‘fighting’ illness, what we are really saying is that our bodies are enemies which must be defeated.

When we say we are ‘fighting’ illness, what we are really saying is that our bodies are enemies which must be defeated.

These distinctions aren’t just semantic. For those of us living with life-long chronic illness, they matter, because they pit us in a life-long battle against ourselves.

Take my autoimmune disease. In all likelihood, I will never be ‘cured’ of it. My treatments aren’t about ‘fighting’ my illness, but managing it: finding medications and strategies that can reduce the most unpleasant symptoms so I can live the best life possible.

Before I changed how I was thinking about my condition, I was constantly exhausted by the ‘war’ with my body. Every time I woke up in more pain than I’d gone to bed with, I’d feel like I’d lost a battle, or otherwise failed. That if I’d just ‘fought’ harder, I would be better.

I felt like I needed to always be on the offense… like giving myself a break was somehow an admission of defeat. It was exhausting.

Illness Is A Language, Not A War

Eventually, I realized that what was happening in my body wasn’t a war. It was a language, one that I needed to try to learn to understand. The spasms and pains I felt weren’t battles; they were like the tantrums of a toddler, trying to make itself understood.

I needed to stop fighting my body, and listen to what it needed.

When I thought of it this way, instead of feeling angry all the time, it became easier for me to practice self-compassion. Shifting my thoughts and language from those of fighting against my body to ones of working with my body allowed me to be more gentle with myself.

These days, instead of being in a constant battle with my body, I’m constantly learning from it.

These days, instead of being in a constant battle with my body, I’m constantly learning from it. When I feel spasms, I now know my body is trying to tell me I need to center myself; when I feel pain or fatigue, I know my body is trying to tell me it’s time to rest.

Now if I wake up hurting, instead of thinking that my body hates me, I can approach it from a place of curiosity. I say: “My body is in a lot of pain today. What do I need?” If I need rest, or medication, or a hot bath, I give myself those things. Gradually, these are starting to no longer feel like signs of defeat, but rather, like self-care.

This body I live in is not a battlefield, and I am not a warrior who needs to constantly be fighting. My body is the vessel I am blessed to go through this life in, desperately trying to communicate with me, and I’m going to start listening to what it is telling me I need.

Immune & Autoimmune Diseases

Learning To Let Go When Your Teen Has A Chronic Disease

His doctors told us our son needed to learn to manage his autoimmune condition on his own. But what should parents do when he stops taking his meds?

My husband trudged upstairs, his face pinched and ashen.

“What’s wrong?”

My stomach turned to lead as he reached the top of the stairs and opened his clenched fist, revealing a half-dozen pills in his palm.

“These were in his garbage can.”

Our eyes met: Oh my god.

It turned out my stepson’s “medication vacation” had lasted about a month, starting when he visited his mom for Christmas. Frantic calls to his team at Children’s Hospital generated concern, but not surprise.

“Yeah, this is pretty common with teens,” said the nurse.

Wait… what?

On doctor’s advice, we had ceded control to my stepson over his meds. He needed to have the responsibility, they said. We needed to trust him. We thought he was on track, and the shock of this revelation was almost as big of a gut punch as when he first got sick. Guilt, confusion, and anger—how could he play what amounted to Russian roulette with his health, after everything he’d been through?  

Well, he’s a teenager.

When Falling Can Be Fatal

Being a teen is all about pushing boundaries, taking risks, and pursuing independence. You’re learning to be your own person and take charge of your life. You are excited by the prospect of new experiences, relationships, and possibilities; long-term consequences are not something you give a lot of thought to. Parents of teens know that, hard as it might be, we need to let go of control bit by bit until they are ready to strike out into the world on their own. We need to let them try, and help them back up when they fail.

Parents of teens know that, hard as it might be, we need to let go of control bit by bit until they are ready to strike out into the world on their own.

But what if “failing” could be fatal?

In the spring of 2017, after battling a long series of ear and chest infections, my stepson’s joints suddenly became painfully swollen and he started coughing up blood. He was diagnosed with a rare autoimmune disease: vasculitis GPA (granulomatosis with polyangiitis). They caught the disease just in time to save his life, but not his kidneys.

He is now almost 18, and the past two years have been filled with hospital stays, invasive and painful procedures, endless medications, both types of dialysis, and a kidney transplant. He will be on medication for life and needs to be far more mindful of healthy living habits than typical teenagers tend to be.

This makes the whole process of letting go a lot more complicated.

The Dark Fear Of ‘What If?’

My stepson’s father and I have needed to be much more involved in the minutia of his daily life than parents usually are. Daily questions about things like blood pressure and bowel movements would make most teens stick their earbuds in and run for cover. His age-appropriate instinct to rebel (which extends to rebelling against his disease) leads to plenty of conflict.

We’ve had other scares since the missed meds. After a confused call from the hospital, we discovered he’d been “making up” his daily blood pressure readings, leading to a dizzyingly incorrect dosage of his blood pressure medication. Most recently he had to undergo a second kidney biopsy because he said he was drinking enough water (he wasn’t) and there were irregularities in the first test. That incident scared him, too.

When these things happen, the dark fear of “what if?” intensifies and the urge to micromanage becomes overwhelming. Yet, the hospital team and our counsellor tell us that having responsibility  helps him feel more empowered over his condition, and feeds his natural teenage need for independence. There are so many times when my husband and I look at each other helplessly, exhausted from the delicate balancing act: checking in without nagging, overseeing without hovering, trusting without assuming.

There are so many times when my husband and I look at each other helplessly, exhausted from the delicate balancing act: checking in without nagging, overseeing without hovering, trusting without assuming.

We’re often torn between wanting to wrap him in bearhugs and wanting to shake him, particularly when he doesn’t follow through on things he wants control over. Resentment and worry can explode into emotional fireworks. Just last night at dinner, my husband exclaimed in frustrated anger: “It’s like you don’t even care! It’s your LIFE!”

Within a year my stepson will “age out” of children’s care and have to navigate an often confusing adult medical system. It’s daunting for him, and terrifying for us. How do we overcome our fear of letting go, of letting him try (and possibly fail), when failure could mean his life? Simply put — we have to.

Choosing To Get Through It

There are glimmers of hope, to which we cling like lifelines in the mist. He set an alarm on his phone so he remembers his meds. He speaks up more during doctor visits. He has a part time job and plays on the school basketball team when he feels up to it. These are all positive things.

We try to preserve a healthy relationship by connecting in ways totally unrelated to his disease. For example, he and my husband both love watching Marvel movies and eagerly anticipate each new release. Being a “step”mom, I’ve had my own connection challenges with him over the years, but humor always brings us together, especially anything that involves accents. Like stents in an artery, these connections help keep the lines of communication open.

Through counseling, we have learned to be more vulnerable and honest with my stepson. He knows we’re not being hard-asses because we like to—it’s because we love him and want him to have a healthy, fulfilling life.

Just as sickness and health are often out of our control, so too is the emotional messiness that accompanies chronic illness. There’s really no way around it.

But we can choose how we get through it.

We can focus on fear, failures, and uncertainty, or we can acknowledge and build upon connection, communication, and small victories. Doing this helps us learn to trust, to loosen our fearful grip, finger by finger, as my stepson stands on the threshold of adulthood. He has already walked through more fire in the past two years than many people face in a lifetime, and, when the time is right, I believe he will confidently take the reins to his future.

Chronic Illness Immune & Autoimmune Diseases

How Diagnosis Can Lead To A Better, Happier Life

Diagnosis doesn't have to be a death sentence. Sometimes it can lead to a better life.

In the two years since my diagnosis with Hashimoto’s,  I’ve have had to reorganize my life to make room for the unique challenges of chronic illness. These alterations to my daily life have been hard and even debilitating at times, but ultimately, they have opened the best possible doors for me.

No one wants to be diagnosed with an illness, but sometimes, it can make you reappraise your decisions, and push yourself to a healthier and happier life than the one you had before.

Sometimes You Don’t Love Your Job As Much As You’ve Convinced Yourself

Two years ago, when I was 30, I was still working in television. Although I initially worked only on projects I loved, it was extremely exhausting and uncertain work. Eventually, I forced myself to take steadier but just as grueling jobs on shows I didn’t like, telling myself I still loved what I did, that it would get better, and that I would stop being so tired all the time.

30 was also the year an onslaught of Hashimoto’s symptoms appeared. For the first 8 months out of that year, I continued to work 12+ hour days. But as the year wore on I started to wear out.  

Hashimoto’s can be insidious. Just when you think you’ve got it under control it bites you – harder.

Hashimoto’s can be insidious. Just when you think you’ve got it under control it bites you – harder. By the time my projects finished at the end of the summer, I was exhausted. I just didn’t have any fuel left to even hustle after another gig, let alone carve out the career I actually wanted. That’s when I decided to use my Hashimoto’s as a catalyst to take on work that would not only fill my need for more rest but also satiate my emotional hunger.

The result of this decision has been a huge blessing. I stopped working in television partly because of Hashimoto’s but it wasn’t the only reason. The other reason was that my interests had simply changed and as a result, I had grown out of the hunger I once had for that business. I had found a deeper sense of meaning in the literary community.

Hashimoto’s was ultimately what pushed me over the edge to switch careers. I worked in publishing last year and later took on freelance writing jobs thereby enabling me to work at my own pace, from whatever location I desired.

Separating The Wheat From The Friendship Chaff

Outside of fatigue, another symptom of Hashimoto’s is depression, and I fell into it hard. I didn’t want to go out with anyone, go out on dates, or even see friends. I felt so drained that all I wanted was to be at home alone. Sometimes friends called, but I mostly ignored them and eventually, those friendships fell away. When I finally came out of my cave with a desirous want of humanity, I found a lot of my lesser friends had moved on

When you’re depressed, the feeling of friends abandoning you can seem like the end of the world, even when you don’t have the energy to see them. Yet, afterward, I realized my depression had done me a favor, separating the wheat from the chaff.

“Who’s showing up for you?” is a question I have found myself asking often, post-diagnosis.

“Who’s showing up for you?” is a question I have found myself asking often, post-diagnosis. Who’s still here? And who’s even cared enough to ask where I’ve been for the past year and a half? It’s an obvious question, yes, but it’s a test that many of our so-called friendships tend to fail. I may not have as many friends post-diagnosis, but the select few I have are the kind who will be concerned enough to call repeatedly if I’m not answering my phone to check in.

When the fragility of life is opened to you through chronic illness, having true friends becomes central in healing and maintain balance.

Living Healthy Doesn’t Mean Pushing Yourself As Hard As Possible

Before Hashimoto’s drained me of strength I worked out religiously four to five days a week. I practiced yoga as well, yet yoga never felt like it could be the workout. It was always a supplement. With this disease in my hand, I had to come to grips with the reality that I don’t always have the energy to push as hard as I could before, which means that I if I’m too tired to work out one day I either let it go or do something gentler. Having to make an adjustment like this might seem like a defeat but it has actually forced me into a more balanced lifestyle. In the past, I was obsessed with exercise and sculpting my body to look a certain way. Now, my gentler workout generally involves some form of yoga and the result of it has greatly aided me in combating the over-exercising mentality I previously had. It has forced me into prioritizing self-care instead, which in the long run has made me feel much better.

[Hashimoto’s] has forced me into prioritizing self-care instead, which in the long run has made me feel much better.

My diet has also changed. Prior to Hashimoto’s I was a vegetarian (partially vegan) for four years. Over time, my diet became stricter and stricter and I became more and more concerned that if I started eating animal products again, I’d blow up like a fish. When I felt strong cravings for chicken or fish or eggs, I’d hold them back. After diagnosis, though, I realized that my urges to eat these sorts of proteins was my body screaming for nutrients I wasn’t getting. I eventually gave in.

Changing my diet has not only given me greater peace of mind, but it’s also given me more energy physically. Since constantly feeling tired is a large symptom of Hashimoto’s, this natural energy boost was very much needed.

Having an autoimmune disorder has given me the fortitude to start an entirely new career in which I am (for the most part) able to work from home and be my own boss. Without it I would probably still be hustling a normal 9-to-5 in TV wondering if I could maybe leave to pursue another passion.

All together, having Hashimoto’s has been a lesson that being diagnosed with a medical condition isn’t always a death sentence. Sometimes, it forces you to make changes that would otherwise lie dormant and unfulfilled.

Immune & Autoimmune Diseases

Confessions Of A Recovering Superwoman

It can be hard to accept, but learning to live with chronic illness means learning to let go.

In the beginning of 2003, I felt like my life was perfectly manageable. I was serving as Poet Laureate of my city and had many projects underway including founding a poetry festival and creating a camp for at-risk teenage girls. I was doing all of these things while holding down a job and raising two young children. I felt like a superwoman.

Then one day my daughter came down with the flu. No problem, I thought. I will just keep her home and take care of her. Then my son came down with the flu followed by my husband. I was taking care of a house full of sick people. Then the inevitable happened: I got sick. I did not as feel as bad as the rest my family. I had a mild fever, and I felt achy and run down. Still, I was still able to take care of everyone.

When my family recovered, I did not. My symptoms lasted for months. My hair started to fall out, and people commented on how sick I looked. My face broke out into a rash, and it was a struggle to get out of bed every morning. After several visits to my primary doctor, she finally decided to send me to a rheumatologist where I was diagnosed with lupus.

After a year of misery, I felt relief. I finally knew what was going on, and I could put together a plan of action. Even better, I had an explanation for other symptoms that had been bothering me for years.

After a year of misery, I felt relief. I finally knew what was going on.

Prior to my diagnosis, I would go out for a day at the beach with the kids and feel sick the next day. The sun felt like someone was sticking burnt matches on my skin. It turned out that lupus causes sun sensitivity. I was relieved to know that the symptoms I had been ignoring were not all in my head.

When I was diagnosed with lupus, my doctor told me that medication would help a lot, but I would have to make some serious life changes. The first thing I looked at was our big house. Before lupus, I used to clean our house top to bottom on my own. Once I was diagnosed, I asked my family to pitch in. I think it took my husband about a month before he gave in to getting a housekeeper.

Author Katerina Canyon.

Once the children were old enough, I sold my house and moved into an apartment near the beach. The house was just too much for me to handle. When I had a lupus flare, I often could not climb the stairs, and I felt trapped on whatever floor the flare started on.

Another thing that changed was that I had to go from caregiver to care receiver. This was a challenge for all of us. It took my family a while to understand that I was not the same person. They did not understand the pain I was in. I had to learn to explain it to them. It took years of communication and years of mistakes, but we learned to understand one another.

My friends and co-workers had to understand that I was not always going to feel well enough to do the things they wanted me to do. I ended up missing a lot of events. There were a few people who did not understand that. That was okay, because I had a lot of good people in my life who supported me.

Despite the sacrifices, I am happy with the way lupus has changed my life.

Of course, the person who had the most to learn was me. I had to learn to only take on things that were most important to me. Most anything I do, I will likely have to do in pain or through illness, so that thing has to be worth it. I decided that writing was worth it.

Early on, I started writing a blog about my life with lupus. Now, I have moved on to writing about other things that matter to me. I write inspirational articles, poetry, biographic and political pieces. I used to work with non-profits but after losing my third job due to my disability, I decided that I would rather write than struggle to hold jobs that were emotionally draining. Learning to live with lupus means learning to let go.

Despite the sacrifices, I am happy with the way lupus has changed my life. Before lupus, I ran around doing all sorts of things without considering how much joy any of the things gave me. Now I am more selective. Writing is something I have always loved to do. Lupus took things away from me, but I get to choose what to give up, and when I gave up less important things, I got more of what I really wanted and needed.

Immune & Autoimmune Diseases

HIV or Not, He’s Still Josh

Josh Robbins' own diagnosis launched him on a path of activism that has made him a vital voice in the HIV+ community.

Josh Robbins’ first step towards becoming an HIV activist came just weeks after his own diagnosis, when he shared the news that he was HIV+ in a February 2012 Facebook post. “I wanted people to hear it from me,” he says. “I wanted to tell my own story, but I also wanted to be a resource to people in my community, really anybody, related to HIV.”

Since that brave admission seven years ago, Robbins has expanded his social media education and advocacy.. From his home base at ImStillJosh.com, Robbins maintains an active social media presence on Facebook, Instagram, Twitter, and YouTube. Healthline.com selected I’m Still Josh as one of 2018’s best HIV blogs, and the National Gay and Lesbian Journalists Association has recognized it for excellence.

Besides his blog and social media, Nashville-based TED-X talker Robbins regularly speaks to university and other audiences, offering inspiring and practical information for those living with HIV and those who care about them. We spoke to Josh to learn more.

John-Manuel Andriote: What interested you in being an HIV advocate?

Josh Robbins: I didn’t know I was signing up to be an HIV or peer advocate for activists when I started my blog. I just wanted to be able to tell my story in a way that was honest and authentic and real. In doing that it became relatable. I also did it because when I was diagnosed I couldn’t find anything online for someone who looks like me. The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson. I was 29 years old at the time and no one had told me in my life that they were HIV-positive, so I was literally the only person I knew that was positive. I was kind of lonely, and I didn’t want other people to feel lonely. That’s why I started the blog and social media accounts.

The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson.

What sorts of issues and concerns do you see in people living with HIV that are similar to, or different from, those of people living with other chronic conditions?

I say in my talks that we’re all dealing with something. My mom has MS. She and I have a lot of similarities just in terms of autoimmune disorders and how things affect us in our bodies and that sort of thing. I think the stigma for some people living with diabetes is very similar to that of someone living with HIV from a perception standpoint. I think people that live with psoriasis a lot of times get judged, obviously for their physical appearance.

I think people who are living with chronic health conditions understand that stuff happens, and that we’re all dealing with something. So I think there are similarities in exploring a condition, learning about it, researching it, finding peer support, making sure your adherent to your treatment and medical plan. And then there is all the stuff you have to deal with in dealing with doctors, getting to appointments, and the financial stress of dealing with a chronic condition. I think those are some of the concerns that are pretty similar.

Have you experienced stigma related to HIV?

Yes I think I have, specifically in relation to potential dating partners or sexual partners. There’s always a lack of education and information. I understand because before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV, because I was scared anI didn’t want HIV and so I didn’t even think about it. I just didn’t want to have to deal with it and I thought that would work.

As far as other stigmatizing stuff, I don’t experience a ton of stigma because I also speak out against it. I think people, particularly people I know, are either gaining education and learning as well or they are certainly not just going to say some crazy things to my face because they know that I’m going to reply.

I did lose my best friend through this. I think it’s a situation where she couldn’t deal with the possibility that people would be really mean to me. She dealt with it with the way she knew how, which was to run away from me. That was really tough and hard.

Before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV…

People living in Nashville are very aware of my activism. If they are in the country music field or space, and they have to think about the group of people they’re around I am a liability to their reputation. I don’t think it’s fair but I think that happens. I have had more than one friend who was an artist who walked away from a friendship with me. That kind of sucked, but that’s how it goes. It is important for me to say that even with that, I still will not shut up about HIV and trying to help people who are living with the virus to live better lives or help people who are negative to stay negative with prevention.

It was a decision I had to make, and I did make before I started my advocacy, which was: I could never be in love again, I could never get married, that’s a possibility. I could lose my friends, I could lose my family, though I didn’t think that was a possibility. I could literally be standing by myself alone and I would still take the decision that I was going to speak up. My safety wasn’t a concern, and it was right for me. So that is how it went down.

When did you learn you had HIV and what were the circumstances?

I was part of an HIV vaccine study with Vanderbilt University. I got regularly HIV tested. I was actually diagnosed very fast. On, November 30, 2011, I was HIV negative. On December 18, 2011, I was exposed to HIV and I got sick on January 2, 2012. I got my final diagnosis on January 24, 2012.

All of that happened because I was a volunteer in an HIV vaccine study, a clinical trial. One of the huge benefits for me of being in that trial was that I was able to get a diagnosis so quickly. I was immediately linked to the care I needed. People I trusted, because I had been part of that vaccine study for over a year, those were the people who delivered the news to me. So I wasn’t in a foreign, stunted setting. I was in the clinic where I was used to being, and had a good rapport with the staff and director. So even though I didn’t want that diagnosis, I got that diagnosis from people who were so caring and so authentic and meaningful. For that I am eternally grateful to them.

How many hours a day, on average, do you spend on social media?

It’s my job, so I’m on social media in some form maybe 15 hours a day. It sounds insane, but it’s true. I do try to step away from it sometimes and you will see that if I’m taking a break. But at the end of the day I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible. It’s not always possible, but I do try to respond quickly to those messages. They come through every relevant social media platform that I’m on. Luckily, I’m in a position of influence, and I have a responsibility that is sometimes overwhelming to respond to these people and try to help, or at least listen, and that is what I try to do.

I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible.

Do you have any advice for others to help build up their social media following?

It’s important for people to be organic and authentic, and not to share information with the hope of increasing their followers. If they share information with their followers, their followers will then organically share the information with their own followers. There is no fast track to building audience on social media with respect to chronic health conditions, but there are tactics you can use, such as when to share information on social media. You want to make sure the content you share is interesting to your followers so they engage and share it.

Sometimes it’s funny to see some of the content that has gone viral. One time, I had a video that literally took five minutes to make and that video has been seen on Facebook by like 50,000 people. Oh my god! It was just something I threw together about using makeup if you were living with HIV, and how that is something that can make you feel better. My messaging was pretty simple: If you feel something like that that makes you feel better, just do it. It’s not that you are not trying to be who you are, or trying to mask your identity. It’s like someone with cancer, if they wear a wig after losing their hair, it’s not that they’re trying to hide their head, but that the wig makes them feel better. I did a video on my phone and posted it, and that is one of my most watched videos on that platform.

If you feel something like that that makes you feel better, just do it.

I think you have to listen to yourself as an advocate for those kinds of moments that pop in. That one was a real-life moment, not something that was scripted or that I could preplan. I just thought while I was doing concealer that morning in the bathroom, “My goodness how many other people either want to do this or have thought about it but are scared other people will make fun of them like I was?” So I just tried to do a video that spoke to that on the personal topic, and I’m glad I did. There are other videos I have planned for weeks and weeks and nobody watched!

 

Chronic Illness Immune & Autoimmune Diseases

Healing Her Gut Through Bread Baking

After a stomach disorder (possibly ulcerative colitis or Crohn's disease), Sarah Owens turned to baking and fermenting foods to help heal her gut.

A blight had crept into the rose garden at the Brooklyn Botanic Garden, and Sarah Owens was beside herself. As a rosarian, or rose cultivator, Owens was in charge of the well-being of more than 5,000 roses at one of New York City’s largest public gardens.

The rose bush leaves were turning red, crinkly and brittle. Owens spent hours kneeling in the soil examining the plants and scouring research to formulate a recovery plan. At the time, Owens – now a baker, cookbook author and sought-after expert on fermented grains – was fresh out of horticulture school and working multiple jobs. The Botanic Garden had hired her to solve the rose problem, and she taught horticulture classes on the side. She was running herself ragged.

Soon, Owens too fell sick.

Severe bouts of diarrhea and vomiting frequently left her curled up on her apartment’s bathroom floor. Many days, she couldn’t go to work. She’d always had a sensitive stomach, but these symptoms were debilitating. “They cut into my work life and personal life, and forget about having any kind of intimacy,” she said.

Owens struggled with flare-ups for months. She’d be doubled over in digestive pain for days, then the pain would subside, only to start up again a few months later, and worse than before. It was a vicious cycle. One Friday after work, Owens planned to join co-workers at a Brooklyn bar to celebrate the birth of a colleague’s baby, but then her stomach started to convulse. She rushed home instead and spent the weekend in bed.

“I felt like I was missing out on life,” she said. “I couldn’t celebrate this really important life moment with the people who mean a lot to me.” That night was a turning point.

Owens was scared to get a bleak diagnosis, but soon after marched herself into her primary care doctor’s office. She tested negative for celiac disease and food allergies. Her doctor referred her to a gastroenterologist who ordered a colonoscopy – it was normal – and put her on antibiotics for bacterial overgrowth, which made the pain worse. Maybe it’s Crohn’s or Ulcerative Colitis, her told her. He suggested steroids.

Around the same time, one of Owens’ close friends had been diagnosed with Crohn’s Disease and was taking steroids. Owens watched her deteriorate. “That’s when I decided I wanted to try to take my health into my own hands,” Owens said. “I started to take a more natural approach, and to tinker around with my diet.”

Owens cut out processed foods and started eating more fruit, vegetables and meats. She started noticing grains like quinoa were irritating her stomach. She stocked her fridge with fermented foods like sauerkraut and kimchi to boost the number of good bacteria in her belly. She made herself sleep more; she took on less side work. It was a holistic approach.

“I realized a leaky gut was leading to all these symptoms,” she said, referring to a condition that occurs when certain foods, stress or antibiotics damage the intestinal lining, allowing food particles and bacteria to leak into the bloodstream. “I was doing too much,” she said, “and stress was exacerbating everything. I needed to heal my gut.”

“I was doing too much and stress was exacerbating everything. I needed to heal my gut.”

Shortly after, it occurred to Owens that the same method might also work in the rose garden. So she got to work replacing its soil with an organic, pesticide-free variety, and brought in perennial plants to diversify the garden and attract helpful insects.

“Plants are like the human body,” Owens said. “If you don’t feed them with a long-term view in mind, you can end up with some very serious issues. For plants it’s soil, for the human body it’s our immune system.” Around 70% of our immune system is in our gut.

Owens has made a name for herself as a baker of artisanal breads.

Owens flew home to Tennessee for Thanksgiving that year feeling a bit better. One day she slipped away from family to browse in a local bookstore, and came across a worn paperback from the 1970s that caught her eye, “Adventures in Sourdough.”

Owens had always loved baking. As she dug deeper into the book, her background in horticulture helped her understand why fermented grains are easier to digest than others. Then a lightbulb went off. Maybe she could support her healing by combining her fondness for baking with her newfound appreciation of fermented foods.

She did just that. Owens started out baking with sourdough in her home kitchen. She found the fermentation process made it possible for her to digest the bread. “The alchemy is so magical,” she said. “I love creating in the kitchen. I love bread. I love a good crusty sourdough loaf made with heirloom or ancient grains.”

Soon, friends were asking for loaves. Eventually, she contacted the owner of a local CSA who agreed to include her bread among its offerings. Then, she took the plunge. She rented a wholesale baking space in Queens and started a subscription-based bakery – BK17 Bakery – after leaving her job at the rose garden. She uses only heirloom, stone-ground flours from small mills across the country and supports sustainable agriculture.

Now, she sells her handmade artisanal bread and cookies to customers around the U.S., including to those with chronic diseases. Sourdough has a lower glycemic index than other breads, and Owens counts people with diseases like diabetes as regular clients. She’s written two cookbooks, one a James Beard award winner, on sourdough and rustic baked goods and spread. A third book is forthcoming.

“Plants are like the human body. If you don’t feed them with a long-term view in mind, you can end up with some very serious issues.”

On a given day in her kitchen, Owens might whip up a batch of chocolate buckwheat cookies with sourdough and walnuts, or a grain-free and refined sugar-free tahini cookie with molasses, cocoa, almond flour and orange zest. Another favorite: a honey lace cookie with dark chocolate and bee pollen on top. Her cookies were recently photographed by a national magazine. She also experiments with homemade vinegars and brews kava, a fermented drink made from stale bread.

Sarah Owens hard at work in her kitchen.

Owens travels the globe to encourage an interest in fermentation. In Syria, she taught refugees to bake with sourdough. A bakery in Russia invited her to teach this year. She’ll also give workshops in Mexico and Australia.

She misses the Botanic Garden, but nurtures her passion for roses by caring for private gardens in New Jersey, Long Island and Connecticut.

“I loved my job at the garden,” she said. “Sometimes letting go is one of the hardest things you can do, but one of the best things you can do for yourself.”

Ultimately, the rose garden recovered, and so has Owens. Since her foray into the world of sourdough, her extreme diarrhea and vomiting have disappeared. “My immune system is a lot stronger,” she said. But she’s still susceptible to stomach trouble if she doesn’t take care of herself, and it’s the same for the roses.

“Once the roses are infected, disease never really goes away,” Owens said. “But if you take care of them, there aren’t as many detrimental effects. Their lifespan is longer.”

Immune & Autoimmune Diseases

How Frida Kahlo Helped This Burlesque Dancer Recover From Paralysis

When Irene Delgado was diagnosed Guillain Barré, channeling the Mexican feminist icon helped her recover, and get back on stage.

The day after she left the hospital, Irene Delgado was on stage, in a floral crown, peasant blouse, turquoise skirt and black Mary Jane flats. She stripped her costume to reveal a medical corset, just like the ones Frida Kahlo wore. At the end of the act, Irene broke herself out of the corset, put her arms in the air, and cried, “I’m free!”

It was a fitting gesture. Like Frida, Irene had suffered debilitating pain, undergone intensive tests and diagnosis: X-rays and spinal taps, blood transfusions and physical therapy, after six weeks in the hospital.

Irene has soulful eyes, a shaved head, tan skin and a free, infectious laugh. She’s 48, but it’d be hard to guess her age, and harder to tell that beneath her small frame is a whole lot of fortitude. Irene was born and mostly raised in the Bronx to Puerto Rican parents. For the past 20 years, New York City had been her home, while she worked as a burlesque performer and costume designer and stylist and other odd and end jobs.

48-year-old NYC burlesque performer Irene Delgado.

One early morning in November 2016, she woke up with a strange, pulsating sensation going down her legs. The painful sensation continued through the day. As she sat, cutting fabric, she felt her muscles spasming. When she attempted to relax, later, the sensation returned: a shock of numbness and electricity, pins and needles. Not only was it going down her legs and feet, but it had started moving into her arms. “I freaked out,” Irene said.

On her first visit to the emergency room at her local hospital, she waited for five hours, in so much pain that she couldn’t think. When she stayed in any position for too long, she started to cry. Her legs were jerking, out of her control. “I didn’t know what was going on. If I had experienced something like this before, then I could pinpoint it.” But the pain was completely foreign, and the doctors gave her few answers. They sent her home with an anti-inflammatory shot, and blamed the pain on anxiety.

She returned to the hospital three more times over the next two weeks. Each time, she left without a diagnosis. In the meantime, the pain escalated. She was so weak that she could hardly eat. She started losing the ability to use her hands. When Irene had to finish a costume for a client, she asked a friend for help, and directed on exactly what to do. For a short while, she grew hopeful that the pain had plateaued. But when it returned, it started to fire up her lower back. She couldn’t sit down and limped when she walked.

Finally, a friend who worked as a ER doctor drove her to NYU Langone to find answers. When she went into the ER that day, her heart rate was 138 rpm, beating so rapidly that she was gasping to breathe. It wasn’t her anxiety that was causing her suffering: something was going on inside her body.

She stayed at the hospital for the next six weeks. Every day, there were a series of tests and attempts at diagnosis. Three vials of blood drawn every day, MRIs and CT scans, X-Rays, procedures that Irene had rarely experienced before. “There was a piece of me going everywhere, all over the United States,” Irene says, laughing.

Doctors speculated that she might have had Multiple Sclerosis, and she tested positively for Lyme disease. Then they noticed the excessive proteins she had in her spinal fluid. After a spinal tap, they told her that she likely had a version of Guillain Barré Syndrome, a rare autoimmune condition in which her body viewed the proteins in her spinal fluid as foreign invaders and started to attack itself, damaging her peripheral nervous system.

For treatment, she underwent five days of plasmapheresis. The doctors hooked up a PICC line from her neck to her heart. The line filtered out her blood and replaced it with fresh plasma. Irene didn’t know what the illness meant for her future, but she and her partner, photographer Adrian Buckmaster, tried to make the best of the stay. Buckmeister recreated the iconic photo of Frida Kahlo in her hospital bed with Irene’s costume. They befriended the nurses and attendants, and spent a happy Christmas in the hospital, when a steady stream of visitors brought food and coquito liquor from “ten in the morning until ten in the evening.” Irene’s friends created a GoFundMe, and in three days, it raised enough money for Irene to pay her rent until June.

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.”

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.” Not only had the illness disrupted her nerves, but the extended bed-rest shortened her muscles. “When I left, I couldn’t walk properly, couldn’t think, I was taking nine different medicines, I was very emotional.” It was hard to explain what she’d gone through, hard to explain the intensity of her experience.

After getting sick, Delgado turned to Frida Kahlo for inspiration.

The night of her Frida Kahlo performance, Irene took two Oxycodins and channeled the artist on stage. Frida had always been Irene’s favorite painter, but now, she had a different understanding of the artist’s work. In her paintings, Irene says, “you can see her loneliness, her fragility… and you can see her strength.”

It was a physically and emotionally grueling experience. The actual stage time lasted only five minutes, but there were hours of waiting and prepping and primping. For Irene, simply sitting down was torture. But she wanted to keep her performance slot: “I didn’t want to be forgotten about.”

Over a year since the illness hit, Irene is still numb from her knees down to her feet — “if I were to scratch my leg, I can’t feel it.” The worst of illness has passed, but Irene thinks she’ll live with the residual numbness for the rest of her life. Irene is still sewing gowns and coats, and performing on stage. The illness has changed her life in one major way: it helped her start a new business, a line of scented creams and lotions and body oils and bath salts, scented and lovely and infused with transdermal magnesium, which she discovered while fanatically looking for ways to reduce pain.

The afternoon we spoke, Irene’s partner was Photoshopping each product in the line, adjusting the curves to reflect the warm or cool shadow of a face cream. She sold the line for the first time this February at a market at a kinky art salon and mixer, and plans to open an Etsy shop. Adrian and Irene have been together for twelve years, but in the skincare line, Adrian saw something different. “This is very special, “Adrian said. In creating the line, he saw something in Irene manifest, something he thought she could do all along. “I guess it took going through the pain,” he said. “You changed your view of the world in many ways.”

Irene made creating the skincare line look easy, because she loved it. And perhaps she’d been gearing up for it all along: Irene had worked for Sephora when it first opened as a boutique in NYC, and had spent years traveling the country doing Dr. Brandt’s microdermabrasions on clients. “I sold the hell out of other people’s products,” she says, “now it’s my turn to build my own.”

Immune & Autoimmune Diseases

Visualizing The Data Behind A Child’s Bruises

When guitar god Kaki King's young daughter Cooper was diagnosed with a rare blood disorder, she turned to award-winning data visualizer Giorgia Lupi to make sense of the hurt.

Giorgia Lupi is a renowned designer and artist who aims to better understand human nature by visualizing data in expressive ways. Through work with clients such as Google, Microsoft, the United Nations, and the World Health Organization with her team at Accurat, much of the philosophy behind Giorgia’s work asks us to rethink what “data” is and challenging us to incorporate empathy into our definition. She calls it “data humanism,” and her latest project is as human as it gets: a look at the fragility of the human body and the emotional rollercoaster that comes with the uncertainty that can cause.

Data visualizer Giorgia Lupi.

Lupi met Kaki King about a year ago during a brand identity collaboration for Hennessy’s 200th year anniversary. A musician and composer, King has seven studio albums to her credit, and was the only woman on a 2006 Rolling Stone list naming the “new Guitar Gods.” Lupi and King found out they were neighbors, and continued to forge a friendship while looking for new ways to continue to collaborate. Then, in August last year, Kaki woke up one morning to find her three-year-old daughter, Cooper, bleeding from the mouth with a dime-size lesion on her tongue. Their pediatrician sent them to the ER.

After a blood test, she was diagnosed with a condition called Idiopathic Thrombocytopenic Purpura, or ITP, an autoimmune disease wherein the body attacks platelets which are a crucial part of blood clotting. It meant Cooper would get spontaneous bruises and burst blood vessels called petechiae all over her body. Kaki described the following weeks as “a terrifying spree of platelet transfusions, courses of steroids, blood tests, and abject terror as we watched her platelet levels rise and fall.”

When Kaki told Giorgia what was happening, she wanted to help. So she turned to what she does best: visualizing data. Cooper’s doctors had instructed Kaki to watch her skin, so they collected notes on the number and intensity of the markings. Kaki also wrote down what activities the two did that day, what treatments Cooper had recently undergone, and her blood test numbers. Finally, Kaki recorded how she was feeling: her stress, her hopes, and her fears.

The final product is called Bruises: The Data We Don’t See. Complete with an accompanying score by Kaki that chronicles the first four months after Cooper’s diagnosis, Bruises is both an emotional record of a family’s journey with illness, and an experiment in empathetic data visualization. Folks caught up with Lupi to talk to her about her own emotional journey through creating it and how it embodies her data philosophies.

How did you and Kaki decide to do this collaboration together?

This summer when she told me something was wrong with Cooper, she sent some medical records and lab results and I was trying to visualize them to see if there were patterns that I could identify about Cooper’s health. But the more we talked, the more we realized that since the condition wasn’t going away anytime soon, maybe it was smarter to do something to help Kaki understand what was going on with her too. After a few months of collection, we decided to try to get a broader message out about her personal journey. Kaki thought “we need to make something beautiful out of this shitty period.”

Were you nervous at any point while working with this sensitive story in such an intimate way?

“We need to make something beautiful out of this period.”

I was nervous when we decided to make the project public because for Kaki, it was very personal and the idea of sharing her story made her nervous. It was a lot of responsibility to share her story. But we’ve already received hundreds of messages from parents and caregivers and just human beings that were really moved. So the doubts and nervousness dissipated. We realized we’re on to something. It’s no scientific breakthrough but it can help us define what data is in the first place.

Musician Kaki King. Her son Cooper’s diagnosis of ITP was what directly inspired Bruises.

How should we be thinking about what data is in the first place?

I’m an evangelist for softer, humanist data. What I always say is that for data to be reflective and representative of our human nature and our stories,  we need to instill empathy and imperfection into how we interpret, collect, and visualize the data.  If I’d represented this in the digital standard, it would not have evoked the same kind of empathy. Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level. The idea of this piece was to make it as an art piece to help people relate to the idea of the disease as something less clinical, more real, and less scary.

Beyond expanding the definition of data, what were the goals of this project for you and Kaki in relation to Cooper’s illness?

Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level.

We did this to try to find ways to use artistic experimentation to help the healing journey and to frame the way we see illnesses. There are many ways to look at a pathology. Charts are important. Medical histories are important. But the information about the personal journey can be valuable to a doctor as well, to be able to suggest a therapy that’s not just based on hard numbers but also what is going on in the life of the family.

Not everyone with illness should collect data, but it can be a process of gaining control over what’s happening. It can be hard to tell the story of the previous months with accuracy. That can be easier if you regularly stop to acknowledge what is happening and observe the details. Kaki says the data collection made her feel more in control to see trends in terms of her mood. She was also able to appreciate the happy moments in these four months because of how much she was keeping track of the difficult times but also because she can remember the joyful moments more also. In the end, Kaki said the experience was healing.

A photo of Cooper with her baby brother.

What was your emotional journey like through making this? Did you find that you understood the experience more empathetically after working with the data?

I had a shared spreadsheet with Kaki, and would read as she filled it in with her data, writing about how she felt. It was very heavy. At times, I really felt overwhelmed to the point that I sometimes thought, “I can’t handle this.” I also worried about Kaki. I didn’t know at the time for sure if the data collection process for her would be healing or torture.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece. You can see the bruises and the pink dots as they are on her body. It’s already a visual disease. But abstracting Cooper’s health into the data made things easier for me. There’s a bit of emotional abstraction that working with data can help you achieve. It’s useful to help people relate because it’s a period of time, of anxiety and ups and downs, and not just this one specific story.

The most stressful times for Kaki were the times before Cooper’s blood tests. They were looking for her numbers of platelets. And those numbers contained the hard truth about Cooper’s health. Sometimes she was looking good, with less bruises, but the numbers didn’t necessarily correspond. The result numbers really determined her emotions and anxiety. That’s why the timeline is not linear but grouped by the days between the tests.

What did you learn from observing the family’s experience with illness?

It was a particularly hard year for me because my dad passed away suddenly in January. I’m an only child, and my mom is alone now. So it’s been a rough stretch and I felt an empathic connection with Kaki. That said, I also don’t have kids. What I learned about was what it really means to be a caregiver. Kaki often needed to maintain a happy face and be a sane parent even when her fear level was really high.  They also just had another newborn in August, weeks before the diagnosis. She needed to be a functional parent and partner. I learned from her as a person, seeing her be able to re-establish normality within uncertainty and get her stress levels under control in just four months. She was able to say, ok, this isn’t normal, but it’s going to be our normal for a while.

 

Immune & Autoimmune Diseases

Game Changer

After surviving 10 heart attacks, lupus, and a leg amputation, kayaker Brandon Holiday aims to inspire a whole new generation of disabled athletes.

It’s a cool crisp day at Cooper River Park in Pennsauken, New Jersey, and Brandon Holiday is teaching a group of disabled adults the basics of kayaking. With his service dog, a yellow Lab named Dyson, sitting near him on the dock, Holiday shows the group how to steady the kayak while getting in and out, and then demonstrates basic paddle strokes.

A lifelong athlete, Holiday grew up in Maplewood, New Jersey and spent his childhood and teen years playing various sports including tennis, baseball and participating in martial arts. Yet he also remembers how he spent much of his childhood fighting high fevers and experiencing unrelenting joint pain.

“My doctor wasn’t sure what was causing my symptoms, but suspected it was a form of juvenile arthritis,” says Holiday, 45. “It wasn’t until I was 21, and in college, that I was finally diagnosed with Systemic Lupus, Primary Addison’s and a rare blood-clotting condition called Antiphosolipid Syndrome.”

Brandon Holiday mentors children and adults with cognitive and disabling chronic conditions.

An autoimmune disease, lupus affect the joints, skin, kidneys, blood cells, brain, heart and lungs. While there’s no cure for the condition, there are treatments available to help control symptoms and minimize flare-ups.

Determined not to let his condition define him, or deter him from pursing his dream of becoming a police officer, Holiday finished college and joined the Salisbury, Maryland police department in 1996. He served on the police force for four years until he sustained an injury in the line of duty that exacerbated his lupus symptoms and caused severe blood clots.

“I loved police work but dealing with complications from lupus made it impossible for me to continue serving on the force,” Holiday says. “A scratch on my leg would turn into an open wound and I had to be constantly on the lookout for infections.”

According to the Lupus Foundation of America, infections pose a big risk for people with lupus and aren’t to be taken lightly, since they pose the second most common cause of illness and death for those with the disease.

With a heavy heart, Holiday left the police force and went on to work different jobs, but continued to have more medical issues due to the lupus.

“I worked as an underwriter and then as a private investigator for ten years,” Holiday says. “I decided to go back to school to become a Physician’s Assistant and was accepted into a program, but while finishing my last pre-requisite class I got a blood clot in my leg which put me in the hospital.”

Suddenly Holiday found himself facing one of the greatest challenges of his life. After four months in the hospital battling blood clots, and undergoing wound care and hyperbaric chamber treatments, doctors told Holiday they needed to amputate his left leg below the knee.

“I had always been so active that the thought of losing a leg, as well as my mobility, sent me into a downward spiral of depression,” Holidays says. “At the time, I wished I could have talked with another athlete who had gone through amputation, or had known of a program that could have helped me learn how to readjust.”

“I don’t know anyone who wouldn’t become depressed after spending months in the hospital and having a limb amputated…”

Rather than offering suggestions on coping with his new reality of being wheelchair-bound, Holiday was frustrated that his doctors believed he was manic depressive.

“I don’t know anyone who wouldn’t become depressed after spending months in the hospital and having a limb amputated,” Holiday says. “I wasn’t sure if I would ever walk again, much less compete in sports.”

After being released from the hospital, Holiday began doing online research to determine if there was a way he someday might be able to participate in athletics again. He knew keeping active was not only key to easing his depression, but that low-impact exercise also offered long-lasting benefits to people with lupus.

Holiday learned about the Challenged Athletes Foundation (CAF), a San Diego, Calif., non-profit that supports and provides opportunities to people with physical challenges, in order for them to lead active lifestyles and compete in athletic events. A year after his surgery, he was awarded a grant by CAF to travel and attend their annual Extremity Games, an extreme sports event for people with disabilities.

“It was an empowering experience to see other athletes with amputations, spinal cord injuries and other disabilities excelling in sports such as surfing, rock climbing and riding motocross,” Holidays says. “It made me realize that if they could still compete in athletics, I could also regain my competitive nature.”

“It was an empowering experience to see other athletes with amputations, spinal cord injuries and other disabilities excelling in sports…”

Holiday took up the sport of kayaking and found he enjoyed the peacefulness of being out on the open water, and that training to compete in national championships gave him a purpose he desperately needed.

As Holiday regained his strength and was fitted with a prosthesis, he began to cross-train in other sports, and became involved with mentoring other adults with disabilities through the national group, Athletes with Disabilities Network.

“There’s nothing like seeing the smile of a disabled athlete who has mastered a sport they didn’t think was possible,” Holiday says. “Coaching and mentoring other athletes keeps me healthy and happy.”

Holiday so enjoyed his work with other disabled athletes that in 2016 he launched a Northeast chapter of Athletes with Disabilities in Cherry Hill, New Jersey where he serves as Executive Director.

Just because you’ve got a condition doesn’t mean you can’t find humor in it.

“Our chapter is comprised of many military veterans from Vietnam and Desert Storm including double amputees and those with impaired vision,” Holiday says. “We also have a great youth program with area Children’s hospitals and local Veterans Hospitals spanning from Philadelphia to the Bronx, to provide Paralympic sports programs.”

Today, Holiday is a member of the National Paracanoe Team and hopes to secure a spot on team USA for the 2020 Paralympics being held in Tokyo. Over the past 10 years he has won a bronze medal in martial arts, a silver medal in recreational kayaking, and seven gold medals in kayaking at the U.S. Sprint Nationals Championships in 2014, 2015 and this past summer.

“There’s nothing like seeing the smile of a disabled athlete who has mastered a sport they didn’t think was possible…”

Despite having suffered 10 heart attacks as the result of pulmonary embolisms, caused by blood clots, stasis wounds to his legs, and skin grafts, Holiday pushes himself to train 20 to 30 hours each week with a regimen that includes both weights and cardio. He says that being inactive actually makes his symptoms worse.

“I’ve learned to manage my condition through a combination of medication Benlysta (the first FDA-approved treatment for lupus in over 50 years) which has made a huge difference and supplements,” says Holiday who also receives assistance from his service dog and constant companion, Dyson.

“I got Dyson after my last heart attack five years ago,” Holidays says. “I was afraid of being somewhere and passing out. Dyson is trained to get help in the event I’m incapacitated and I have a special K-9 phone that he can press with his paw to call 911.”

In addition to preventing his owner from sleepwalking and helping Holiday if he falls, Dyson has also proven to be a popular fixture at sporting events.

“Dyson isn’t just my sidekick, he’s a real celebrity,” Holidays says with a laugh. “He’s always there and willing to take pictures at the podium with race winners.”

Immune & Autoimmune Diseases

What Hashimoto’s Taught Me About Prejudice and True Beauty

My mother's Hashimoto's diagnosis made me realize how much I took her for granted, and how much I dismissed her for being overweight.

When I think of my mother, I think of uncooked chicken on a cutting board. I think of her on her hands and knees on the floor cleaning our kitchen tiles. I think of her plump, pale white skin, and the heavy sound of her breathing as she trundles up the stairs. And most shamefully, I think of the single word I used for most of my life to describe her, and hate myself for it: fat.

My family, we’re Albanian Muslims, which means that not only do we like to eat, it’s our main past time. When we have parties or family gatherings, we can’t start doling out the booze, so we just start serving more food. Consequently, we were a tribe of eaters, ministered to by my Mother, who seemed to always be hunched over the stove growing up, cooking our favorite meals for us day or night: a lifetime spent frying or baking or sautéing or reheating food for the seven people she loved.

But never for herself. As long as I can remember, I’ve seen her counting calories, sometimes for months at a time. It didn’t matter; she was always shopping for looser pants or looser shirts. Her daily regimen of chores would have reduced other guys’ moms to skeletons: she was always lifting, always cleaning, always killing herself for a house we couldn’t afford, smack dab in the middle of New City, a small but wealthy suburb in New York, with its three floors and disastrous mortgage.

Her daily regimen of chores would have reduced other guys’ moms to skeletons: she was always lifting, always cleaning…

Eventually, my father lost his business, and so my mother lost her home. We moved out, into two cramped, Lodi, New Jersey apartments that were hastily renovated, but still far smaller than where we’d previously lived. And without a chandelier to Windex, or floors to constantly keep scrubbed, my mother just gained more weight.

Still self-conscious of her weight gain, my mother asked us to blur photos of her for inclusion in this piece.

She slowed down. She’d always hated going to the mall, which she associated with our toy aisle temper tantrums, and the humiliating experience of having to buy new clothes.  Now, though, just walking to and from the car was a chore. Around the house, she’d get dizzy spells when she stood up too quickly. She’d even start to breathe heavily when doing simple things, like pounding chicken to grill for my brother, who insisted the protein was vital to his weightlifting “gains” process.

She was selfless. No matter how much her weight made it harder for her, she was selfless. She drove us to and from school, cooked for us, washed all our clothes, dealt with all our shit. She cleaned toilets, and bid on construction jobs for my father, who–after failing another business venture and plunging our family into debt again–seemed to do nothing but nap all day. But it was she who was tired. Yet she did it all, quietly, never appreciated.

The excessive fatigue and weight gain finally forced her to see a specialist. But it tooks years to get a diagnosis. She’d see a doctor. They’d put her on medicine. It wouldn’t work. They’d try another a month later. That wouldn’t work. They’d try another medicine. Finally, some results. But then the insurance would run out. She’d have to see another doctor. Rinse repeat.

It took about 11 years, give or take, before they finally diagnosed my mother with Hashimoto’s disease

It took about 11 years, give or take, before they finally diagnosed my mother with Hashimoto’s disease, an autoimmune disorder that gradually destroys the thyroid, eventually leading to weight gain and fatigue. It turned out that, with the right meds, her younger, better years could have been saved, but better late than never, right?

My mother on her wedding day.

Sometimes, I look at these pictures of my mother when she was still young and I cry. She looked like she’d been carved from marble: beautiful, tall. She somehow managed to make the outdated hairstyles of the early 80s look good. Her skin was clear, her smile was warm and vulnerable hovering above a straight posture that ran a line down to her feet.

Then I think of her at the height of her obesity. Her face, full and tired. Visibly shorter, as if she’d collapsed in on herself. And when I compare her to her past self this way, I ask myself: was it really the Hashimoto’s that made her sick? Or was it my family, which ran her ragged, and sapped the energy out of her, and never appreciated her?

It’s at these moments that she seems, to me, to be most tragic and mysterious. Do I really know this woman, who gave up a computer science scholarship to Princeton to marry my father at 17? What lies in the soul of this woman who would thrill me as a child when I heard her tip-toe through the house at night, softly singing lyrics from the Quran?

How could I have taken her for granted for so many years? How could I have dismissed her as fat?

She was, and is, so much more.