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THE FULL STORY: Bobby and Lindsay Earle are two of the most beautiful people I’ve ever met. The words I have to share are only going to barely scratch the surface on how much they mean to me and all they’ve been through. I realize this is going to be a long post, but their story is one that needs to be told and shared, and I’m honored to get to take part in doing so here.
In 2012, Bobby was diagnosed with a severe case of Crohn’s Disease. Over the course of a year, he spent over $100,000 trying to treat his disease. He had insurance at the time, but because insurance companies know how expensive Crohn’s can be, they found a loophole in their agreement and dropped him completely (and illegally). This may sound like some kind of conspiracy, but I was with him during this whole process and it was heartbreaking (to say the least) to see his insurance do that to him. He had gone most of the year expecting all of his expenses to be reimbursed by insurance, but when they weren’t, he had blown almost their entire savings on medical bills. He lost over 40 pounds, was having a lot of adverse reactions to the medicine he was taking, and it was an awful situation.
In 2013 he found a treatment that ended up giving him a break from it all - he actually went into remission for a while, which was a miracle. However, all of the stress, frustration, and loss that year was really difficult on their family. Clive had just been born and it was incredibly hard for Bobby to work. Unexplainably and suddenly, Lindsay came down with what is now known as status migrainosus. This has left her completely disabled and in excruciating pain for 5 years now.
“When I say Lindsay's disabled, I mean that she is both practically and clinically disabled; unable to cook, clean, work, play with Clive, run the dogs, walk, sit up on her own, or do anything without my physical assistance. Often times, I am carrying her to and setting her on the shower floor, opening her mouth and manually brushing her teeth for her, setting her on the toilet, carrying her back to the couch, and so on. During these attacks, which became the norm around March, much of her right side will go numb, her right eye swells/droops, her right ear droops, and she leaks fluid only out of her right nostril and eye. She's often unable to communicate normally with me. She's unable to eat (her last doctor visit saw her weigh in at 103lbs). She can't interact with Clive in any real way… It's an incredibly traumatic experience. It is truly the deepest pain I've experienced in my life (which has seen its fair share of pains). She's gone from running the dogs 6 miles a day (with Clive), doing half marathons with ease, climbing the great wall with a 4 month baby bump, and so forth to being quite literally imprisoned in our house.”
I have stayed at their house for multiple days at a time and to see her in this much pain is unbearable. Every part of my heart breaks for her, Bobby, and Clive. That is their reality, however, and the most difficult part for most people to understand is that it’s most likely not going to get better. They have tried almost everything possible to help her - including an experimental procedure that helped for a few weeks but then stopped working. During these 5 years of her being disabled, they have lost almost all of their friends. I think it’s really hard for people to know what to do or say when there isn’t anything to be done or said that can make it better. When you call up a friend after they went through something really hard, you always expect to hear something like “well that was a really trying time, but now things are better and I learned so much from it.” When the answer is continually that things are just getting increasingly worse and worse, most people just honestly bail and choose to avoid. This has left them feeling utterly alone and despondent. To be in the amount of pain they are in (physically, spiritually, mentally) and not feel like people love them or care is honestly unbearable. Their physical pain has made it so that they can’t really do anything normal - seeing (or having) friends, enjoying a good conversation, celebrating holidays or birthdays, and having relationships even with each other is basically impossible. Bobby has been and is both Lindsay’s and Clive’s full time caregiver.
“Lindsay has been robbed of life in nearly every sense of the word -- as has Clive -- and both need my complete and total best. I have no margin for error with them; and this often means I almost ignore people at times. It is not intentional. I'll often find myself cleaning the house at 2am and realize I haven't showered in two days or eaten even a snack that day.
When the person you live for is in a state like Lindsay is, I just can't set my focus anywhere else.”
I have witnessed this first hand EVERY time I have visited Bobby and Lindsay. Bobby is honestly the strongest and most loving men I have ever met. He is the husband and father that I only hope I can be some day (he and my father are huge role models to me). He is battling a severe case of Crohn’s himself… yet he literally gives his entire heart, body, and spirit to Lindsay and Clive. Every time Clive starts to get depressed or acts out because of the effects of being a full time caregiver for both of his parents, or just normal kid stuff… Bobby is at his side instantly. He is there to comfort him and help him think logically through what is happening and why. To see him love his son continually the way he does … it brings me to tears now even thinking about it. If you watched the above video, you’ll see that Clive has picked up photography and is an incredible photographer himself. Its been not only an outlet for him but a way for him to share his life with his mom. He is also an incredible skateboarder - all of because of his dads love and care.
And Bobby’s love for Lindsay? Unending and completely devoted. Before they were both diagnosed, I cherished them and their relationship. They have a way of loving each other that makes you want to be a better person just by being around them. And now that they are both dealing with physical pain, I cherish them all the more. To see them love each other through tragedy, loss, sorrow, heartbreak, grief, depression, anxiety, pain, worry is one of the most powerful things I have witnessed in my life. Whenever I get the chance to talk to them one on one, they both express their concerns for the other person to me - they continually put one another before themselves.
Both of their priority is Clive, however. As much as they love each other, Clive is on the forefront of every decision and thought. To say that this process has been hard on Clive would be a giant understatement. He found solace in Lindsay when Bobby was going through his awful Crohn diagnosis… and they have a really special bond. When she got sick, Clive honestly got his mother taken from him. How do you explain to a three year old that their mom can’t be seen or talked to right now?
“Clive knows when she's in an attack (which is all day/consistent now) and most nights (like last night) I'm trying to calm Clive back to sleep while he begs for his mom at, let's say, 3am -- then rubbing Lindsay's hands or feet (if she can handle the physical touch) while she moans/cries/screams until she falls asleep at, let's say, 6am (usually when Clive wakes up). He'll scream that "momma" has been gone too long and throw his toys everywhere. I can't even type out the more severe experiences I have with Clive through this as they are simply too painful for me to share.”
At 8 years old, he is now a full time caretaker for Lindsay and also for Bobby - all he can think about most of the day is them and how they’re doing. Even while he’s at school he’s always wanting to check in and he is an incredible boy. CNN did an amazing article and story on children that have to take care of their parents here:
Help for a 'hidden population' of caregiving kids
Ever since I met them in 2008, they have been one of the most influential couples I’ve had the honor of knowing. How they live their life is inspiring - even now in so much pain and loneliness they continue to inspire and encourage me. To be with them is honestly a divine and almost holy experience. I realize that may sound strange, but the rawness of humanity that exists in their space is hard to explain. To be able to grieve with them and just sit with them in their pain and sorrow… is truly a gift for me. The fact that they continually let me in to an unbearably vulnerable space is just amazing to me. They face the hardest questions together and have allowed me to face those same questions with them. Identity, God, friendship, loneliness, deep pain… I really do love every minute I get to spend with that family.
This request is hard for me to ask. It’s hard because I’ve accepted that their situation won’t get better - so while 50,000 would help them get through 2018, they’re going to need so much support in the future. As their friend and brother, I am in for the long haul. I’m devoted to make sure that they 1) know that they are not alone 2) remind them that so many people still love them and care for them 3) share my heart and finances with them. They need your help desperately and while money helps some of their immediate needs - they need lawyers, care advocates, government programs, and assistance in every area that they can get. Long term solutions is what I want to help find for them - and I have a some ideas for the future but I am inviting any and all of you onto this journey with me. Its been heartbreaking for me to see people I love with all of my heart in so much pain… but I know I have to do something and I’m only starting here.
- Kenny Robinson
- Natalie Daukas
- Veronica Herrell
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