The Earle Family
Lindsay and Bobby guide their son, Clive, in the making of a brave man.
Bobby and Lindsay Earle met right after high school. Bobby became a successful international photographer, allowing them to travel the world together, visiting close to 40 countries. At four months pregnant, Lindsay even climbed the Great Wall of China—for the fifth time.
Clive entered the world in September 2010, completing the Earle Family.
In the years to come, chronic illness hit both of Clive’s parents. Bobby was diagnosed with Crohn’s disease when Clive was only 10 months old, which made it difficult to be actively involved in the early stages of his son’s life. In 2013, Bobby found a treatment plan (albeit a costly one) that helped him manage his illness, allowing him to be more present for his family.
Just a few months later, Lindsay, who had episodic migraine that started in her 20s, had a migraine attack that has never stopped. The neurological disease has left her extremely debilitated to this day.
Using Art to Cope with Life
To deal with the heavy burden that Clive felt when Lindsay became sick, he followed in his dad’s footsteps by picking up a camera. Clive decided to show his mom what his world looked like through a camera lens. This project has led father and son to places they never could have imagined.
Clive has met his skateboarding idol Shane O’Neill, had a photo shoot with Melissa Etheridge, and witnessed major political events. But for Clive, it’s all about showing Lindsay what lies outside, a place she rarely has the ability to go.
Lindsay is “extra grateful to have a voice in this project,” but her story will be told mostly through her husband’s words and her son’s pictures. Below are photos of their family journey taken by both Clive and his dad. Bobby’s explanation of each shot will open your eyes to the sorrow, heartbreak, and even closeness that having chronic migraine can bring upon a family.
Bobby: “One of many reasons for starting Clive on this photography journey was for him to have a go-between for the difficult situations he finds himself in each day. Initially, it was a real challenge seeing his mother in these states of emergency. It was very traumatic for him when these states became the norm. He struggled developing. He reverted to being a baby at three years old, refusing to talk much. The first time I put a camera in the middle, he could be in the situation without it forcing him to worry.
“Nowadays, I might ask him, ‘Clive, can you get a picture of me helping Mama?’ and he’ll do so, without worry/anxiety, and finishes with giving her a kiss or grabbing something she needs. This picture, of me helping Lindsay take her medication, is one of only two he’s chosen to hang up next to his door. The other one is just like it.”
Bobby: “This is one of the few times I can’t remember if I took the picture or if Clive did … I mostly remember how dreadful that day was. The chronic waves of nausea increase the pain, or vice versa. Vomiting causes pretty scary increases in stabbing, electrocuting pain, and overall pressure throughout her head. She tries to avoid it at all costs but hardly ever wins the battle.”
Bobby: “I carry Lindsay like this as there are times where cradling her like an infant—how I normally carry her—increases the pressure and pain in her head.”
“This picture highlights one of our family’s biggest challenges: people judging Lindsay’s life/ability/disease by these incredibly intimate (but misrepresentative) moments. Years after Lindsay’s diagnosis, we still have immediate loved ones who try to hold their poker face over our situation, balancing what we say (how severe it is) with what they see (these rare moments that clearly show a ‘normal-looking’ Lindsay) during the hour that her pain is dulled enough to where she can function briefly.
“Most people don’t accurately judge how severe and disabling this disease is for people with chronic/status/refractory migraine. Right when her medication takes, the countdown begins. Every second counts. Every wasted second counts even more. Most of the time, we can only pick one of the few places near our house—and that’s basically two grocery markets and Little Caesars on our
block—and Walmart, some fast food, and the 99 Cent Store around the corner.”
Bobby: “In May of 2015, we flew out to the Reed Migraine Center in Dallas for a trial peripheral and occipital neurostimulator implant. This is the first moment I was alone with Lindsay after her trial neurostimulator implant. She was groggy and out of it, but I could already tell it was working like we had hoped it would. No amount of pain management ever brought her to this level of relief.
“We knew anything working today had a real chance of not working very soon, so once it worked, we treated the trial like it might be our only time together as a family. The doctors understood our concern and allowed us to keep it in far past the five-day norm. That allowed us to fly home and experience more life in three weeks than we had over the three years prior, combined.
“The permanent implant never worked like the trial did but we would gladly fly out to Dallas every month to implant a three-week trial if that were an option. She’s said time and time again how happily she’d live with wires coming out of her body if she could go back to living again. Clive had Lindsay back for nearly three straight weeks that year.”
Bobby: “One of the sad realities we’ve begun to accept with becoming a status or refractory migraine patient is that each day is the worst, most painful day Lindsay has ever experienced—while realizing, at the same time, that each morning is likely the easiest morning she’ll encounter from here on out.
“We have to move forward with the assumption that 2017 will be much harder than 2016 was, so the time to make any dream happen—no matter how foolish, irresponsible, or impulsive—is NOW. We did just that in September 2016, with a last-minute trip to Iceland. We definitely didn’t have the money for it. There’s no way it would work out to be an overall ‘enjoyable’ trip for Lindsay. We knew she’d get, at most, a few moments at maybe three or four different sites near our cabin in exchange for a lot of unmedicated international travel. But it was definitely the right decision. Both of our mothers, seen behind Lindsay and Clive here, came along to help.
“Traveling as a family was something we always assumed would happen. Dipping our toes in that dream was a risky choice, and we paid the price, but it was the right choice.”
Bobby: “Clive and I managed to attend and photograph quite a few political events last year, consciously not choosing sides. He photographed Trump supporters protesting Ted Cruz; Bernie Sanders gave him a full-access press pass for one rally and Secret Service clearance for another; he photographed President Trump giving a speech from inside a rally as well as the protesters out front… He’s witnessed a lot of life, culture, and history with our cameras, that’s for sure.”
Bobby: “The most important experience Clive might ever have in all of this was when he photographed an incredible woman who survived Auschwitz. The above photograph is of Marte Cohn. She is a French Jew who spied for the Allied forces, using her flawless German to fake being a nurse who lost her fiancé in war.
“In reality, the Nazis captured and killed her fiancé and they killed her sister at Auschwitz. She snuck back to the Allied forces with information over a dozen times. Each time, it was very likely she’d be captured and killed. What a privilege it was to have my son photograph such a beacon of heroism.
Bobby: “People often ask about Clive being a photographer when he grows up, what his favorite picture is, who he’s most excited about photographing one day, why he likes taking pictures… all very understandable questions. The thing is that Clive doesn’t identify with any of those things. Getting him away from here, the door to the room where his mama spends much of her attack time, without hating me and life and everything else is the biggest daily challenge I have.
“He knows as well as I do that she’s not OK when we leave. Other friends and family may carry on with very little issue; but not Clive. Almost no amount of distraction can compete with how badly he wants to be with her like before.”
Lindsay: “My religious beliefs greatly impacted how I view my disorder and the effects it has had on my life. I try my hardest every day to see living in constant pain as a chance to grow my spiritual trust and dependency. Some days are easier to have this perspective and my faith is tested the most when it comes to my son. But having a ‘big picture’ perspective helps mitigate the overwhelming nature of how hard just one day can be.”
Bobby: “I’ve got a gigantic list of experiences I’d love to come Clive’s way based on his interests. It’s been one of the more purposeful parts of this whole artistic experience; mixing in unique opportunities to help guide him through life as he grows up. Special memories to compete with the constant heaviness he stores up.”
Bobby’s short list includes the cast of The Secret Life of Walter Mitty, President and Mrs. Obama, Jennifer Aniston for her role in the movie Cake, and Cindy McCain (and any other high profile migraine/Crohn’s/chronic disease patient). Clive dreams big, but his focus always comes back to being with his mama.