I’m Lala Jackson, and I’m a chronic health author, speaker, and advocate. I’m a staunch and vocal advocate for health justice and intelligent approaches to health care policy and delivery, particularly as it concerns people living with chronic illness, and I love writing and speaking about all of the amazing things that bond the chronic illness community
I don’t do new year’s resolutions because they hold no real importance to or impact for me. I already put so much pressure on myself to succeed that they feel like yet another source of pressure and – let’s be real – ones that are rarely stuck to.
So after college, I shifted. Instead of resolutions, I started choosing words – one word per year – to guide my intention. They become my theme, my gut-check:
“Does XYZ serve this intention I’ve set? Yes or no?”
And if it’s no, it’s out. For me, it’s both easier and bigger. Setting a one-word intention is far more about who I want to be, rather than what I want to do.
It shifts my value from what I can produce to what kind of human I aim to be.
Since I’ve started, my words have been:
2018: I VERY intentionally did not set a word this year.
I explained why I didn’t choose a 2018 word in last year’s post but in summary – I needed a break. Setting a word means telling the universe you’re open to all the challenges and lessons you need to really learn the true value of that intention.
In each year, I have most certainly gained or grown further into my intention, but they were not without the kinds of lessons that knock you to the ground and test how much you want this thing you’ve asked for. I explain in more detail about this in my post about my 2017 word.
If you’re looking to choose your 2019 word, here’s how I suggest going about it:
Get REALLY comfortable with opening yourself up to the lessons – the amazing and the tough – that will come by setting your word. There is no way to be prepared, but without being open and surrendering to the lessons, this is just a surface activity.
Don’t force your word choice – Take walks. Work out. Meditate. Spend time outside observing. Spend concerted time unplugged and away from others’ thoughts and influence.
Write about what themes have been popping up in your life lately – is there anything in particular you’ve been avoiding, not giving enough attention to? Is there a common thread among your personal relationships or professional work that may be worth working on? How do you want to show up in the world? What do you want to improve about your relationship with yourself?
Jot down whatever words come to you, but don’t attach to the first few. My word normally comes to me after a few weeks of mulling over it. My pattern is to have about 10 words I’m tossing around that seem close but not right when one will pop into my head, seemingly out of nowhere in the middle of grocery shopping or some other every-day task. It’s an instant “ooooooooooooh, that’s it!” feeling. When you know, you know.
More precise words work better, I think. When less fits under the umbrella, you can put more energy toward it. When you do those gut checks of, “does XYZ serve my intention” damn near everything serves the intention of ‘happy’. Less serves the intention of ‘serenity‘.
If you’ve truly done the work and the word just hasn’t come, don’t force it. Your gut doesn’t have to move by the calendar year – maybe your gut likes going by your birth years, or by the solstices. Maybe you have a really hippy-child gut, ya know? Just don’t NOT do the work and use that as an excuse for why the word didn’t come.
Once you’ve landed on your word, don’t just sit back and not think about it for the year.
Make your word front and center. Keep writing about it. Make a visual representation of what that word feels and looks like to you. Keep meditating on it.
The details are not your responsibility; they’ll show up as they need to. But the intention lies wholly on your shoulders.
Overall, it takes bravery going into the year knowing that you’re going to be knocked on your ass to learn the lessons you’ve just asked for.
When you choose a word, you have to choose it knowing that the universe is going to do anything it can to deliver, even if it means shoving you into uncomfortable places. It’s the only way to do it. Discomfort is the only real way to grow.
My first total existential crisis – the “why am I here? what’s the point?” variety of meltdown – kicked in when I was about fifteen.
College was the first time I found mirrors of my experience, which I believe help immensely, being able to know what you’re going through is real.
A poet I knew said that reaching out for help when you’re not doing okay mentally was the bravest thing you could do. Up until that point, all I had heard was “suicide is selfish.”
I implore everyone to never say that phrase again. It undermines what people are going through, and isn’t at all helpful. It just induces more shame, not having a single thing to do with thoughts of suicide.
Understanding that my thoughts weren’t selfish, but WERE a thing worth asking for help with is what led me to counseling in my early 20s, which helped identify my dysthyma. Up until last year, I was managing well with diet and exercise – some days harder than others, but rarely with unmanageable dips.
Then last year around this time, I was severely suicidal, worried I wasn’t going to be able to survive on my own. Yaz birth control had tipped the scales too far on my brain chemistry and I was in a scary place, so I ran away to my mom’s house in South Carolina for a few weeks.
That was a sprint to stay alive.
This past year has been the marathon.
I have been suicidal (although not as intensely) over the past year more times than I can count. It’s the weight I acknowledge and carry around, expending a lot of energy on babying it.
A lot of “I see you, but we’re not doing this today.”
A lot of “fine, I get that you’re not leaving, but can you take two steps to the side?”
A lot of hunkering down through the storm.
A lot of removing anything that feels like it’s going to expend too much emotional energy so I can survive this.
It doesn’t help to reach out. I wish it were that simple. It’s something I’ve had to figure out how to frame, how to shift the weight so a new part of me can carry it when one part gets tired.
That quote above didn’t make me feel like something life-changing was around the corner, like this was going to magically melt away.
Expecting that then not getting it would make me lose too much hope. Getting happy then ending up right back where you were is how we lose people that we thought “were finally doing well.”
But it did make me realize this thing I’ve been carrying is my workout; the payoff is in the training. It helped re-frame my weariness.
The self-awareness I have gained around knowing and understanding my struggle with suicide is a gift in itself, and it’s one I hope to impart to you by sharing it.
Now that I recognize my thoughts, they’re not quite so overwhelming or scary. They still suck – don’t get me wrong – but they are a bit easier to shift to one side.
Same way type 1 diabetes has made me more courageous and resilient, suicide constantly whispering in my ear has made me really fucking strong. Power lifter status. Now I can throw cars out of my way, proverbially.
And if not even we can stop ourselves, sure as hell no one else can.
No matter what is leading you to these thoughts – loneliness, feeling burdensome or inadequate, being weary from a health issue you’re carrying, I want you to recognize the inherent strength you have in carrying this thing.
I know you wish you didn’t have to be strong just to get through life, but isn’t it cool being a superhero?
I know that knowing you’re loved doesn’t mean a whole lot, in the end. It just makes you feel more guilty for being so exhausted, but isn’t love in itself kinda magical?
I know that knowing people need you feels like more of a weight than a gift. But it is a reminder that this weird little universe we live in seems to have something planned out, the people it puts in one another’s lives.
I think it takes some of the weight off, knowing that this is something you can get through, even in the times you feel like you can’t or don’t want to. The pain of feeling like you want to end things is intense, but what a fucking warrior you are for it.
I hope you find the breath to talk about it – just a little bit to whomever you’re most comfortable with. Even if it’s your dog. Just get the words out.
A feeling acknowledged isn’t as heavy.
Find any tiny little thing that brings you joy. A flower. A dog outside. A ridiculously hard workout that makes you sweat through your clothes. The sound of a kid playing. Love, Simon on HBO.
Let it help you move through this thought until it’s not as intense, a little lighter to carry again.
It is one of my favorite Carrie Fisher quotes, stated in her frustration around the public debate on whether or not she had aged well.
“Youth and beauty are not accomplishments,” she said. “They’re the temporary happy byproducts of time and/or DNA. Don’t hold your breath for either.”
We do others a disservice when we only celebrate the things they have no control over.
For kids, for friends, for strangers, we often point out the things that will inevitably fade or pass, and things that – because they were applauded for so long – these people will fiercely hold on to, then be terrified of losing.
When youth or beauty were the things that were elevated as the person’s value, what happens when they are gone?
I have a slightly manic obsession with being the first/youngest person to do something. When I go into classes/conferences I automatically look around the room and try to figure out if I’m the youngest and, if not, how many other people are “beating me.”
I’m 31, so the situations in which I am the youngest are becoming less common. It’s been getting to me. It was important to me to have my book published before I was 30. It’s felt deeply important to make sure I’m racking up accolades as quickly as possible before they’re “not as impressive,” which of course puts a massive amount of stress to beat the clock.
Because I was an intelligent and tall little kid, I never went to kindergarten, started first grade at 5, got accepted to college when I was 16, and started at 17. I didn’t turn 18 until weeks before my freshman year was complete. I was intensely proud of it, and immensely disappointed in myself when it took five years for me to finish college, throwing off my intended life timeline.
I hiked the Grand Canyon when I was six years old – one day down, camped at the bottom, one day out, no donkey rides involved. On the chilly March day we hiked, a group was taking a poll of the ages of all those who hiked. They were able to snap a picture with me – age 6 – and a gentleman – age 70 – who seemed to be the youngest and oldest on the trail that day.
After becoming obsessed with rowing during the 1996 Olympic games in Atlanta (which I watched, glued to the TV, from our Seattle studio), I refused to wait until I was 13, the required age to join the local rowing club. They let me begin at 12. Everyone else in high school, I was the sole middle schooler on the team (but just as strong as the rest).
It was cool to not go to kindergarten where I probably would have been bored, it was great to have the opportunity to hike one of the world’s most amazing sites at six, I was certainly itching to get on a rowing team, but through all of it, I managed to then develop a super unhealthy attachment to being the youngest of any achievement group, and time dictates that that’s just not something we can hold on to.
A large part of my sense of self worth got tied up in how quickly I could make something happen; how young I could be while still doing something impressive.
It means that now, even if and when I do something impressive, it means nothing to me. I didn’t do it quickly enough. I didn’t achieve it on an impressive timeline. I am no longer going to receive the same pats on the back for being so young to do something, and my self-worth was based on that acknowledgement.
I do not want to be the person who is attached to the things I did in my youth. I do not want to be the person who feels as though the best of what I’ve done has passed, since in my mind, the best of what I’ve done could only have been achieved while exceedingly young.
So here’s a challenge. Instead of pointing out the things in other people they have no control over – their youth, their beauty – let’s instead lift up others’:
tenacity and resilience
kindness and compassion
pursuit of knowledge
integrity and grace
wisdom and consideration
discipline and perseverance
and any other multitude of things that are 1000x more important, more worthy of celebration, and far harder to achieve.
Disclaimer that I have to put, even though – duh: all thoughts and opinions are my own and not that of my employer’s.
There is no space for competition or animosity among diabetes organizations if any of us are actually truly aligned to our purpose – wiping diabetes off the map.
I have been involved with both JDRF and ADA since my type 1 diabetes diagnosis in 1997. I have done advocacy, hill visits, fundraising events and volunteered with both. When Beyond Type 1 was founded more recently, I hopped on their amazing community app, have shared their resources, and attend their events too.
I have worked for JDRF for a little over 2 years and have as much respect for this organization, ADA, and Beyond Type 1 as I always have. I STILL use each organization’s resources and go to each organization’s events. I donate to and fundraise for each.
I’ve found that almost anyone I talk to who actually has T1D knows that not only CAN these organizations coexist, but they should.
There SHOULD be overlap, there SHOULD be things delivered by each in different ways. There is plenty of space for this. There is no competition; we can and should all do well.
How can we possibly expect every single member of the T1D community’s needs be met by one? How do we expect to find a cure with just one?
Anyone who feels otherwise cares about their own ego, their own experience, or getting credit more than they care about the actual T1D community.
You can absolutely believe that one organization does something better than another – that personal preference is fine.
But it is ego talking if you believe that your experience of T1D is the same as everyone else’s, and that therefore everyone needs resources in the same way and delivery.
I know that each and every organization has been guilty of this ego – under various leadership, with various people at the helm.
But each organization is made up of people, with different ideas, different experiences of and relationships to diabetes, and it is up to us to start moving in a more collaborative direction.
We all must cut the bullshit out.
We must move away from the ego shit and move toward knowing that we each need to and must be in this space.
Anything else is serving ego, not moving us toward better outcomes and a cure for T1D.
In the early 2000s on the Hawaiian island of Oahu, a healthcare group was having trouble improving health outcomes for certain populations of native peoples.
The problem they were trying to solve was not unique – this population of native peoples tended to be obese, have high blood pressure, high cholesterol, and died young – 30s to 40s – from complications of all. The healthcare group wanted to help these native peoples fix the problem.
To paint the picture, you may know the remake/mash-up of “Over the Rainbow/What a Wonderful World,” sung in a soothing manner by a man with a high voice playing a ukelele.
The song is by Bruddah Iz – Israel Kamakawiwo’ole. He died at 38 from complications of obesity – he was 6’2″ and at one point, 757 pounds. He is of the group of native peoples the healthcare group was aiming to help.
The group set up local clinics – they knew one barrier to health was traveling for appointments.
The group set up a nutrition and exercise program – they knew that this population had a high calorie diet and minimal exercise.
They had positive interactions with the patients, who seemed perfectly fine with the new programs. Doctors reported that people would show up to their initial appointments, seem really pleased by the plans they were presented, were very polite, but then would never show up again and didn’t seem to adopt any of the recommendations.
“Why don’t they care as much about their health as we do?” the doctors and healthcare administrators would lament.
“We’re providing all these resources and they’re not even showing up. Don’t they care?”
A year later, the group had seen no progress. Zero change in health outcomes.
Frustrated, they hired consultants to go in and talk to this group of native peoples. They wanted to know why the program wasn’t working.
Why, after positive initial appointments and resources poured into the program, the native peoples just weren’t taking advantage of what was being provided.
It turns out the healthcare group’s problem was two-fold:
They had not payed attention to the cultural factors at play.
They had never asked what this group’s health goals actually were.
The healthcare group saw a population with certain health metrics and went in with the textbook plan of what works for all people to lower weight and get healthier – better nutrition, more activity, routine health checkups.
What they had failed to ask first is if the people in this population actually had a desire to change.
This population liked and enjoyed their current lives. They lived in a beautiful location on Oahu. They enjoyed quality time with their family. They didn’t feel as though they experienced much stress. They ate what they wanted and enjoyed. They didn’t have a negative body image around fat. They didn’t think too much about doing anything they didn’t want to do – be that exercise or whatever else.
They were culturally non-confrontational and didn’t want to push back on doctors when the doctors said they should do this or that. They were good ideas, yes. Just not ideas the people of this population wanted to adapt.
They liked their lives and, when they passed away in their late 30s and early 40s, felt as though they had lived a good and full life with the time they had. Those who DID want a different life or different health did so.
By failing to ask the people of this population what they actually wanted, the healthcare group was measuring health problems and outcomes in a very colonial way – entering a population of people, assuming that the group’s goals and intended outcomes were the only possible path.
They failed to consider that their program’s intended outcomes were not the only possible goals. And in doing so, they disrupted a community and poured resources into a program that was never structured in a way it could succeed.
I share this story because of a panel discussion I attended recently entitled “Diabetics on the Margin,” intended to discuss the experience of living with type 1 diabetes (T1D) for people of color.
Unfortunately, a non-T1D endocrinologist on the panel ended up dominating the conversation in a way that showed she clearly hadn’t been listening to her patients or considering their various experiences.
As anyone who lives with T1D knows, every experience of T1D is different, we each respond to medicines and dosages differently, and there is no blanket way to take care of T1D, even without considering cultural differences and issues of access, which are ever present.
Her heart and intention were in the right place, but her ego, her need to be right, and her lack of listening had taken over.
I implore doctors and health system administrators in all fields to ASK more than you ASSUME. Never forget that you are in a field of people, and as much as people do tend to fall into categories, no two people will have the same exact experience of health. It is your job to listen and design programs around those varied experiences, not around monoliths.
I’ve seen a lot of posts on IG from women along the lines of “other girls are just mad they don’t look like me” or whatever else. There’s a ton to unpack there, but I’ll say this:
If you feel as though your best accomplishment is your looks, you’re missing the bigger picture of who you are. I promise there are more interesting things about you. Your value is not based on your ability – perceived or actual – to make others jealous of your looks.
I think you’ll find that when you’re busy growing and developing your mind, your abilities, your character, your spirit, you start to realize there is no competition physically. It’s just not where the real work exists. That contest stops mattering.
I am with you that I love being called beautiful by a partner or a close friend – but it’s because when they say that, I know they’re saying it based on knowing the whole me. When they comment on my beauty, I know it’s for the whole package.
I want my partner to be attracted to every part of me, not just what’s shown in a photo. I want to know they really SEE me. That whether I’m rocking a full on freakum dress or lounging in sweats, I’m still always the beautiful me.
It’s also why comments from strangers about my looks mean nothing. They don’t know me. They could be giving the same comment to an outwardly beautiful person with the ugliest heart and it would still be the same compliment, so I don’t want it.
Taking care of the only body you get to live in is important. Taking pride in your appearance is great. But if your self worth comes down to comparing your outward appearance to others or thinking THAT’S the marker of whether or not you’re “better” than someone… What are you going to be left with when that shell of yours isn’t part of the hand you’re playing anymore?
Let’s focus on, celebrate, and lift up our and other’s best qualities – our hearts, our minds, our courage, our resilience, our compassion, our kindness, our persistence – the shit that actually matters.
Please help me use my voice to influence healthcare! I’ve been nominated for a WEGO Health Patient Leader Hero award, but I need endorsements from YOU. It’ll take 2 seconds, and mean an incredible amount to me. Click here, then click the “Endorse Lala Jackson” button.
WEGO Health Awards connect the healthcare industry with top patient influencers. By endorsing me, you let healthcare companies – insurance, medical, advocacy, wellness brands, etc. – know that I’m a person whose voice is worth listening to in the health space. You know this is my jam, and I’d really appreciate your help to make these relationships happen for me.
I was diagnosed with type 1 diabetes when I was 10, in 1997. I started meeting with local congress people through JDRF’s Promise to Remember me campaign, and traveled to DC with ADA when I was 17 to speak to lawmakers on the hill. My being a “bulldog” (ADA’s head of government relations at the time’s word, not mine lol) made it so an important bill got signed to allow kids with chronic illness to better and more safely take care of themselves in public school.
I’ve always used my experiences and voice to speak up for others with chronic illness because I know just how much my privilege has afforded me. Even when I was not able to get access to health insurance for 13 months after I graduated college – pre ACA – I was still able to survive because of the generosity of my friends and family.
I know multiple people who have died in the same situation because they weren’t able to afford their medication.
I can’t look at people who are carrying similar things as I do and not fight for us. This award will help me continue to elevate my voice in spaces where I have the opportunity to affect change. Thank you for helping me do that.
Imagine what you’re doing to your brain if, for days, weeks, months, years, you are repeating the story – I am sick. This is hard. I’m tired. Everything hurts.
Imagine how much it fucks with your brain to HAVE to repeat that story to doctors in order to get them to believe your symptoms. To explain to your friends and family, over and over again, why you’re not up for doing XYZ thing.
Imagine how much, in the struggle to know your experience is valid, that this isn’t just in your head, that what you’re going through is real, you have to ground yourself in that reality.
In having to tell your sickness story over and over again just to be seen, heard, or understood, how many times have you emphasized to yourself just how sick you are?
When we ALWAYS talk about our health and its lack – whether from necessity, habit, or both, we are barraging our brain with sickness. Our health experiences are valid, but what is the cost of proving that? And why are you working so hard to prove it when you know it’s real.
Getting doctors to listen to you is vitally important – fire the doctors who don’t and keep it moving.
Receiving validation from our friends and family – knowing that they truly hear and see the weight of what we’re going through is important as well, but the people who get it, get it. The people who don’t, won’t.
Where’s your mental camera pointing? To the darkest parts of you, only showing them to yourself? Or to the brightest parts, bringing those parts of you to the forefront of your mind?
Choosing to focus on the brightest parts is a process. If you force the thought, it won’t feel real. But slowly shifting creates impactful change in your brain over time.
Choose a middle thought. Instead of “I am in pain all the time; it’s never going away.” maybe “I feel best in the middle of the day. In those moments, I can focus on my creativity, and that makes me happy.”
Video from my keynote below! This past weekend, I had the really wonderful opportunity to give a closing keynote at the Students with Diabetes national conference. I spoke about the superpowers we gain from the challenges we go through. I shared some stories from others and a few of my own –
– At the start, I taught hula, because that’s how I wake people up at 8:30am on a Sunday.
– At 12:34 I tell a story about how my mom taught me to use my superpower of voice.
– At 20:30, while talking about the superpower of vision, you’ll see why I think some of my superpowers are transparency and vulnerability, because I share an incredibly tough and personal story from last year.
– And at 42:02, some true superheroes took the challenge to identify their own supowerpowers they’ve gained from the challenges they’ve been through, then share on stage.
It takes a lot to not only publicly share our challenges, but also to publicly declare our strengths. Props to those who got on stage and to all of the attendees who did the work. There is POWER in being vulnerable and I’m proud of this crew for choosing to be that brave.
While I do not plan on giving this exact speech again, it can be tailored for a more general audience and I’d like to give less time to me speaking and more time to workshopping and honing in in superpowers; it’s best suited for audiences from 15-30 years old. If you find value in it and want me to come to your campus, organization, or workplace, let me know!
Check out the full speech below:
Harnessing Your Superpowers Keynote | Lala Jackson - YouTube