My name is Bobby Earle and I was a full-time international photographer until 2011, when I was diagnosed with Crohn’s disease (nine months after my son, Clive, was born). After achieving remission in 2013, I went back to work until my wife, Lindsay, was struck with a terrifying brain disease that mostly keeps her from being able to interact with our little family. I’ve been raising Clive since he was two and a half—he’s now five—and in an attempt to use art to help him cope with Lindsay’s ailments (status migrainosis, refractory chronic migraine, and allodynia), I’ve taught him how to shoot film. He’s been shooting and loading his own film (both instant and 35mm) since he was four. He has his own Instagram account (@makingofabraveman), which he uses to share glimpses of his day with his mom. But below are some photos from my own Instagram (@bobbyearle). If you enjoy this little Instaglimpse into our lives, please come say hi and get to know a small part of this unknown minority— chronic pain sufferers. Thanks so much.
The Making of
a Brave Man
A rough day for @lindsayearle, but well spent ;)
“...It’s much easier to work out of the world outlook in which enduring suffering is meaningful than to say ‘to endure suffering is nothing if I do not love.’ And loving is infinitely more difficult than enduring.”
— Metropolitan Anthony Bloom
When Clive gets to spend a full day with Lindsay he tends to get really inventive and silly with his request combos. It’s amazing. A couple days ago, with a 103.7 fever, he grabbed a black dress out of the closet and argued with her to wear it... and then go ride scooters at the local school. And by argue, I mean insisted for 20 solid minutes (she said yes right away but he was so excited as if he wouldn’t believe it was going to happen until the dress was on and we were walking out the door haha). He held the dress and followed her everywhere, stood outside the shower with it while she washed her hair, repeated “wear a dress like Elsa???” She’d suggest a less formal dress and he’d insist, “No, this one!” Lindsay scooted around a crowded school in a little black dress and Clive soaked up every second of it. Scooting with a fever isn’t a good idea but there was no stopping him. I love this kid.
We’ve gotten a lot of questions about Lindsay’s health situation over the last year. There were many reasons for not fully explaining—but the primary one was that Lindsay simply didn’t accept her diagnosis until very recently. In an attempt for Lindsay not to feel so alone in all of this, she’s asked me to share about her situation. Sometimes just getting it out there can help.
When Lindsay was down to 100 lbs
I just wanted to share @lindsayearle's situation on my Facebook to let friends know how they could be involved. What's come from that has blown my mind. So much love. Thousands of shares... So many people I want to respond to... Our hearts are so full. We might not have many good days but we squeeze good out of every day. Thanks to you all.
Lindsay goes in for 30+ injections of Botox into her skull again at 11am. This will be the third and final attempt (three treatments over nine months). She had a decent, two week positive reaction after the first three month injections. No (noticeable) reaction after the second round. The third round is the round that shows all potential. If it doesn't work for her this treatment, unfortunately she will have one less option (that started off promising). This picture is from a few minutes ago. #clivekruger was playing while Lindsay tried to rest/prepare for the painful trip to the doctor today; and the more difficult recovery days to come. It's always worse for a week or so after those shots. Hoping she catches a break this time :)
When Lindsay can’t get up, Clive will often lay on her like this. There are times where it breaks my heart that this is such a normal part of his day, but I know it’s making him into a really incredible human. He’s amazing with her :) Tomorrow is Lindsay’s birthday and so far nothing has been working for her condition. At 2:45pm today, we’re going in to try a nerve block. Hoping a) that it doesn’t make it worse as it can in some and b) that it gives her a break for her birthday tomorrow. And maybe it’ll last a few weeks like it can for some!
Lindsay after a week of not being able to brush her hair. I really love this picture :) #ae1 #ultramax400
We've thought about shaving her head because having a ton of rad wig options (without the added pain from constant hair weight) could be pretty ripping :)
He was my biggest help in my two year fight with #crohns (and still with my smaller "battles") and his support only grew when @lindsayearle was hit tragically with all of this in 2013. What would this world be without friends? Thanks @joshnewton for seeing us through a rough (but normal) three days this weekend.
It's been a rough day/night. Clive grows more nervous with each day since the trial implant was removed. Today he's been panicky, insisting Lindsay do things she can't. It's the same song and dance he's been doing since he was two. When this all started. He gets a small window of time where he spends most of a day with her and his world lights up. And then the disease keeps her away for weeks/mxonths before she can spend a good day with him. And even that time is so guarded; with most of their time lying down. In practice, this has resulted in him dealing with the loss of his mom multiple times a year/month; each time experiencing real mourning/loss/trauma. When I read about the things children go through when a parent passes, it sounds like the majority of his last two years. He's been put through so much... As he walked past Lindsay this afternoon, who's been stuck to the floor for too long now, on his way to the dollar tree with two dollars in his hand, he knelt down, hugged/kissed her, whispered "(gasp!) mom! You look so pretty!" and then left her his two dollar tree dollars. But not before sneaking in one more kiss before he left. We fly out tomorrow. I hope this is the last time for a long while where Clive has to deal with such painful things :)
Lindsay on the floor. Instax from the ladder. This is both the bad part and the most common part of our day. Life sort of revolves around these moments. She wasn't able to make it from the bathroom back to the couch, she collapsed, and just waited till I got home to move her. It's a heart sinking feeling every time I walk in and see her face down. She has risks of heart attack/seizure/stroke that I'm always looking out for. Not to mention how unfair it is for a little boy to see. If we're lucky and Lindsay's body accepts her medication, which it doesn't at least once a week, 21 of 24 hours in the day are bad instead of all 24 being bad. We're grateful for it, and we squeeze all the joy out of those moments we can, but it is certainly bittersweet.
for checking out my Insta-selects and thank you to ENDPAIN for helping to share our story. If you’d like to find out more about our little lives, you know where to find us (@bobbyearle, @lindsayearle, @makingofabraveman), and if you’d like to help us fund Lindsay’s insanely high medical bills, please visit this link: gofundme.com/bobbyearle. Finally, I’d like to say: In taking care of my wife I’ve found that one of the kindest things one can do for those who suffer from chronic pain is to better understand what they are going through. The emotional exhale of feeling like other people care and are willing to listen is the next best thing to a cure or treatment, and it’s something everyone with a loved one who suffers from chronic pain can do—just listen, ask questions, all it takes is time.