Down the Rabbit Hole

Devona Jefferson, frustrated with the toxic work environment that was wreaking havoc on her lupus, reached her wit’s end and jumped down the rabbit hole. But such jumps are never simple. Devona was already doing fine art photography when she left her job, and knew she wanted to expand that into a business. The problem was she had no business plan beyond a vague idea that she should approach galleries to display and sell her art.

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Wit's End

This is Devona Jefferson. I met her through a mutual friend and found out that she has recently achieved something many of us have dreamed of, but are too afraid to try. Devona has always been creative. She picked up a camera for the first time when she was just 11. It was a Kodak 110, one of those flat black rectangles with a flash bulb that looked like a giant Lego piece. She was immediately taken with the artistic medium, and her father got her a 35mm camera for her college graduation so she could run with it.

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It's A Start

Over the last couple of years, I have been fighting the weight gain that accompanies out of control Type 1 diabetes when you get it back under control. In the past two years, I have gained nearly 50 pounds due to some pretty big circumstantial and psychological stressors. I have often felt desperate and helpless against the onslaught of this kind of weight gain, and there have been times where I have had to make a conscious choice not to do things that would be overtly harmful to my body, like allowing my blood sugars to stay high so I don’t gain weight. (The weight gain happens when your body goes from high blood sugars that don’t allow you to absorb all the food you are eating to good blood sugars, where your body absorbs every calorie. Ten pounds every time.)

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Personae

If you’ve ever seen that word before it was probably at the beginning of a cast listing for a play, which only makes sense since it’s the plural of persona, “a role or character adopted by an author or actor.” But it has also come to mean the face we show the world. Without a public persona, there would be no privacy. Everyone we know would know everything about us. My colleagues see a version of me that is completely different from the one the friends I grew up with see. And, of course there is little or no persona with family. Hard to hide anything from the people who were there to witness you develop all your flaws.

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Everyday Drama

I was all set to write my article this week when something threw me for such a loop that it needed to be aired. I am used to my fair share of difficulty within my healthcare universe – insurance reimbursements gone missing, fellows that argue over test results, etc. – but I am not used to my medical life bleeding into areas completely unrelated. Let me explain.

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....Or Not

Last week, I encouraged you not to sacrifice the things you love to accommodate your condition. Now I am going to play my own Devil’s Advocate. I have cataracts. Large central cataracts, a gift left over from my treatment for meningitis. (It happens sometimes when you take high doses of steroids.) Back then, it was just something in my medical file. My doctor once told me that they develop about as slowly as sand moves. Slow as that is, eventually the sand does move.

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Oh, The Concessions You’ll Make

If you have a chronic condition, you are immunocompromised. If your immune system worked properly, it never would have attacked whatever system it did until said system didn’t work anymore. That poses a problem for us during cold and flu season, or any season, really, whenever someone you spend time with – friends, family, colleagues – is sick. Even a little sick. If something is going around the office, it takes me three times longer to shake it than it does for everyone else.

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In The Eye of the Chronic Beholder

I hate my body. Well, that’s not fair. It’s more of a love-hate thing. I love that it’s resilient enough that I am still alive – truly amazing! – but I hate everything else. There is the exhaustion that drags at me any time my blood sugar that isn’t within a fairly narrow range. There is the nausea from damaged nerves in my stomach. There is the occasional, but crippling pain that shoots into the base of my skull from my shoulder, a leftover from my paralysis. I could go on, but this is not the time for what my family calls the “organ recital.”

Last week, I started seeing some articles about “Snapchat dysmorphia”, a condition where people are starting to get plastic surgery so they can look like what their Snapchat filters make them. This shouldn’t be a shock in our social media society, but it is one of the saddest things I have ever heard. It’s just a leap (bigger than a step) too far.

Most everybody has something about their bodies they want to fix, but chronic conditions make it worse. When you are seriously ill and not treating your condition helps you suddenly fit society’s physical ideal, or at least your perception of it, it is harder to take action to bring your condition under control. (How many of us are not so upset to lose a couple of pounds if we have to suffer through the flu?) When you take medication that makes you put on weight or causes hair loss or affects your skin, it is tempting to skip it, even at the risk of your condition’s stability.

I’m no different.

When I lose control of my diabetes, getting back in control means automatic weight gain. Going from not absorbing everything you’re eating to absorbing every crumb will do that. If you want a healthy and stable diabetes monster, you have to just accept it. Exercise can help mitigate the weight gain, but not all the time. In the simplest terms, if I am unhealthy and I want to be healthy, it means I am going to get a little bit fatter. And if it’s an improvement I can’t maintain, I will get a little bit fatter every time I get my diabetes under control.

The most dramatic example of this was my initial diagnosis, when I gained 60 pounds in six months because I had basically been in a state of starvation, and the less than stellar medical providers available to me wouldn’t work with me to appropriately adjust my diet plan. (I hadn’t developed yet into the advocate that would have ignored them and done what felt right to me.) This is how I developed a diabetes-specific eating disorder.

At least I was lucky on the social side. I never lived in a house where there was an emphasis on fashion or beauty. My mom was beautiful, but she was the kind of woman who, on the rare days she used makeup, would use her lipstick as blush. She had Crohn’s disease and could never quite get off the Cortisone that made her gain weight. I suspect it bothered her, but I can’t remember hearing much about it. I also can’t remember ever seeing a Cosmo or Vogue in our house, ever. There was zero pressure from my family to conform to society’s dictates. Even so, I thought I was fat even when my BMI said I was not even in the overweight category.

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Luckily, my body image ideal has evolved since I was a teenager. I don’t want to be thin like I was then. I want to be strong, like I was before my unfortunate work situation a couple of years ago knocked me off my regimen. When I was exercising regularly and my progress was tangible. When I could run intervals for the length of an entire TV show, it gave me confidence and a sense of purpose that leaked into other facets of my life.

I know it’s not easy to change your perception when we are surrounded by the shallowness that social media society causes. It’s so tempting to compare ourselves to the people we see in magazines or on Facebook, but those are only snippets of their ideal, not their whole lives.

So try not to do that. We’re outside the norm already. Just going to work every day – or every other day – makes us stronger than the average bear. And we understand our bodies in ways healthy people never will. If we try, we can recreate our physical ideals based on where we want our conditions to be (the parts we can control). Forget social media. Why not let that be our new standard of good and beautiful?

Silent and Unsung

Let’s talk about the caregivers. Not all chronic and autoimmune conditions require a caregiver, but a lot do, especially at the beginning. No matter what the diagnosis, it is a big, traumatic adjustment, and it’s always better with someone to lean on during the days when you just don’t want to deal.

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My entire family served as caregivers when I was little. I couldn’t walk because of the effects of b strep meningitis. They had to get me stuff, feed me because one of my arms didn’t work, and take me where all six-year-olds need to go – to school, outside, to the doctor. Even my 2-year-old-brother gave to the effort in that he was (unintentionally) marginalized when he should have been the center of attention.

When I was a teenager, I didn’t want help. I pushed everyone away until I couldn’t anymore. That didn’t mean my family wasn’t caregiving.

Sadly, I had the chance to give back a decade later when my mom was diagnosed with pancreatic cancer, which, thus far, is always a death sentence. I was lucky – I was between college and beginning a career, so I was able to focus on her completely. Both she and my dad told me to get a job, but if they’d really meant it, they would have pushed harder. For 11 months, I didn’t do much but spend time with her, take her to doctors’ appointments, and care for her as she deteriorated. It never occurred to me to bring in outside help, even as she got to the point where she struggled to bathe herself and use the restroom on her own.

I couldn’t let anyone else see her like that. I think we both felt that she had done for me, so it was ok, but anyone else would have dented her dignity too much. If she hadn’t been caretaker for my diseases, I’m not sure she would have let me. I think a lot of caretakers think they owe it to their loved ones to take care of them, and expense notwithstanding, would feel guilty if they didn’t do it themselves. I felt guilty for leaving the hospice for a couple of hours on my birthday.

Eleven months is not a long tenure for a caretaker. It didn’t tax my time since I didn’t have a job. But watching someone I loved so much dying was unbearably stressful and emotionally taxing. Don’t get me wrong. I don’t regret a minute of it, even the two weeks I spent on a cot in hospice with her (over my 24th birthday) and telling the truth when she asked if she was dying. (That is probably the hardest thing I have ever done, and I got yelled at for it, but how could I have done anything else?)

By the time we buried her, I could barely move. I called one of my closest friends and ran away to Texas. I didn’t need much attention from her. I just needed to be away. Two weeks passed quickly, and I wasn’t ready to go back, so I doubled my stay. Even after that, I was still tired enough to fall asleep at a Smashing Pumpkins concert.

When you care for a loved one, you don’t just go through the motions. You put everything you are into it, sometimes more than you can afford to. If I felt completely worn out after less than a year, I can’t imagine what happens to those who are long-term caregivers. Depression, anger, and guilt are all common. But there is support now. Caregivers shouldn’t feel bad about taking time for themselves, to regroup and recharge. If you do, keep in mind that everyone, including your loved one, will benefit when you feel better. You won’t be able to take care of anyone if you don’t take care of yourself.