The Earles
From Bobby:
I wrote the below on my facebook page as a way to better inform Lindsay's family/friends about her situation and how they could help her through it. I never knew Courtney Dellafiora or anyone would set something like this up -- nor did I imagine it would go as far as it's been going. We have no words to describe how loved we feel after trekking through so much solitude for so long.
The loved ones, the acquaintences, the strangers... My God, we're grateful to you all.
Bobby Earle
----------
Please help Bobby and Lindsay Earle's medical bills by donating. Thank you!! Read their story below:
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 -- so here it goes :)
After 6 months of severe pain in her head and abdomen, a leading neurologist immediately diagnosed Lindsay with a rare, incurable neurological disease at the start of the year that has forced her to have a constant, never ceasing migraine which ends up leading to stroke like attacks where she is completely disabled. The disease primarily has a genetic component that, in her case, is likely made worse by fairly large tumors above her eye brow to her temple that were removed several times many years ago -- leaving severe scar tissue and a sort of indentation on her skull (potentially resulting in unnaturally added pressure on the nerves in her head). As serious as my Crohn's disease was in 2012 and 2013 (I was prescribed leukemia chemo three times in that period), she's taking on something far worse than what I have dealt with.
When I say Lindsay's disabled, I mean that she is both practically and clinically disabled; unable to cook, clean, work, play with Clive, change diapers, run the dogs, walk, sit up on her own, or do anything without my physical assistance about 4-6 days of the week. 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. Truly the deepest pain I've experienced in my life (which has seen its fair share of pains). This has resulted in many awful things like severe insomnia; to the point that we have gone about 7 months without sleeping in the same room together (heartbreaking for two people who've happily spooned every night for 12 years). She had to switch off birth control for stroke reasons -- which brought about ovarian cysts rupturing and leaking into her abdomen (all while having a constant migraine and usually in a stroke-like attack). We have regular (painful) conversations about potentially shaving her head and moving to wigs -- as the weight of hair causes intense pain during her attacks (even tho she'd look great in wigs ;). Having more children is a distant, sort of impossible dream. In 2013, she struggled with severe abdominal issues without any GI being able to find why -- and we now know that people like Lindsay can get what's called an abdominal migraine; which is what we believe those were/are. Clive knows when she's in an attack 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. 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.
The attacks, which have become the standard state of life for 2014, are dangerous as they constantly increase her risk of stroke. She'll go 24 hours without being able to feel her face while her limbs, legs, and digits are almost always numb. She's often at the point of passing out and is constantly lightheaded/dizzy. Her brain simply won't shut off and relax -- and this results in stroke risks that cause me to worry constantly.
By March, the attacks had increased to about 25 days of the month -- rarely leaving more than 4-6 "good" days a month where she simply has awful migraines that don't allow her to do much more than sit on the couch. A good day has been when Lindsay can simply make it to the car -- and stay seated the whole time -- while I go pick Clive up from preschool. That or, if she can't do that, sit in the shower while Clive joins her. Sadly, these have been rare events. Often times, that small amount of movement is enough to trigger her stroke like attacks. She fought this for a few months; much like a horse being broken for the first time. This meant more attacks. Eventually, she learned that she must follow the lead of her attacks -- stay in her cell or be whipped, so to speak. Pushing through the pain simply isn't an option most of the time as this moves her to a stroke-like state that puts her at risk. Strokes are not to be taken lightly in our situation.
This depressing prognosis is very hard to accept for friends and family. We tend to see a pattern where people initially show severe compassion which slowly evolves into frustration/inability to accept the situation and then, ultimately, to (understandable) avoidance. The compassion comes from seeing a friend (Lindsay) in heartbreaking pain or, for the very few people who've seen Lindsay during an attack, from seeing her rendered completely disabled where I'm running wild trying to help her where I can and also help our poor son who's been traumatized by what's happened to his mom. The frustration then comes from the inability to accept that the severity of our situation is to be expected for the disease and that the disease, medically speaking, isn't going anywhere. If you have hand tremors from Parkinson's, for example, people accept that this is a direct cause of the disease. Since so many people have regular migraines, it seems much harder for people to accept that Lindsay's disease is completely different; so they think of a friend who gets migraines often (which is awful in its own right) and add "my aunt removed Gluten and she's way better now." This tends to be when we are told lots of things like "we've got to find out what's causing this!" or "have you gotten your house scanned for environmental issues?" or "maybe you could try and push through the pain?" or "you should try yoga/accupuncture/X diet/etc." After finding out we have tried all of those things -- and then hearing the explanation that everything that is happening is normal (much like a person with parkinson's expects to have tremors since they understand the nature of the disease), the inability to accept that this is the case leads to a sort of loving frustration that results in avoidance. It's understandable as this is hard for people to accept about a loved one; that there's little to nothing they can do other than offer support THROUGH the situation. But that support, while desperately important and necessary, will not result in lowering the attacks. Most people (understandably) want to see their help change the situation for the better; and when that isn't happening, it's perhaps too painful for the person to be involved. Subconsciously, many people feel as though their better off not bothering Lindsay since they can't actively change her medical situation.
So, yes, the prognosis is grim. Much, much worse than what I faced when I was diagnosed with Crohn's disease 3 years ago. There's no cure. Treatment is often very ineffective. Many spiral into suicidal depression (something we deal with). And when you're lucky enough to find medication that helps lower the severity and frequency of the attacks -- which often takes many months or years to locate -- there's the constant fear that your body will become immune at any moment. It's seems to be unheard of for someone to find a treatment that works for more than a few years; leaving you back where you started. And that is a scary, lonely place.
The other challenge is the name of the disease. Many people who suffer from common migraines, let's say 2 or 3 a week, typically tell people that they have chronic migraines. Pragmatically speaking, this totally makes sense. If you get migraines a few days a week, it make sense to say that you have chronic migraines. Unfortunately, Lindsay's disease is very different from that -- but the name (Chronic Migraine Syndrome or Chronic Migraine Disease) causes people to misunderstand her disease and conflate it with friends who experience migraines fairly often. While people with regular migraines can have a real life struggle due to their migraine disorder, Chronic Migraine Disease has made us skip Clive's 3rd birthday party (likely his 4th next month), postpone opening Christmas presents until February, miss nearly every family and friend event we've been invited to… hell, we can't even commit to traveling to her brother's wedding day with any confidence -- and we both love him to no end. It's forced me out of working regularly (after an already long, two year break from my Crohn's struggles). And, most certainly, common migraines (again, as awful as those can be -- I am not intending to belittle those who have migraines) would not leave me in the incredibly heartbreaking situation of constantly having to separate a little boy from the mom that he's been obsessed with every day of his life. The bond he has to Lindsay -- in part due to her being the primary parent for his 2nd and 3rd year of life while I was teetering back and forth with Crohn's -- is painfully strong. He just wants her every second. And she wants nothing more than to be with him. My average day is spent in that delicate balance of trying to preoccupy him away from both mom and home. Yesterday was a rough day as it was my birthday and instead of her doing fun things to celebrate like she'd like, she spent the day home alone while I actively kept Clive away from her. I obviously don't care about my birthday but those things hit her hard...
For me, I would like to let lots of friends and family know -- mostly for the first time -- that my life is completely occupied in every way. My focus, time, energy… If I don't give every waking second to my family, we will crumble. It's a daily struggle and serious work to keep my Crohn's under control while caring for Lindsay, Clive, the dogs, cooking, cleaning, doing laundry, fighting insurance, sleeping off and on typically between the hours of 1am and 5am; but I'm grateful beyond measure for the abilities I've been given back this year so long as I do the hard work necessary to retain my relative remission each day. Lindsay's 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 know that has cost me with other relationships and I hope that this will bring some context to that situation.
If you are a personal friend to Lindsay, please know that she hasn't kept the severity of the situation from you for much reason other than she simply kept holding out hope that it would be something else -- something more manageable -- something that a future test would show us. With that, if you're able, please be as involved in her daily life as possible. Text her, send her a note or knick knack, stop by to give a hug if she's able to have visitors, accept her situation -- and the life-long and depressing nature that goes along with it, understand that she can't schedule anything out (even just the next day). A major thing to keep in mind is that good days do come. And when they do, we do everything we can to live it up. When this happens, friends and family can almost instantly assume things are back to normal. It's an understandable assumption (mostly brought on by a strong, loving desire to believe her situation is better) but try your best to remember that while we appreciate good days, we have to be prepared for them to end at a moment's notice. Last month, she felt good enough to go and drive alone to see a friend for the first time in half a year. In horrible tears, she let me know that she had to turn around before she got to the freeway -- and she was terrified her friend would be upset for her canceling (which she wasn't, of course). We just rung up another five figure bill at the ER two weeks ago, Lindsay's insurance won't cover her neurologist or any medications he prescribes, and our medications/premium are ridiculously $$$ every month (I spent five figures on my medications alone in 2013) so do not feel snubbed if she's having a decent day but can't make it to anything that requires money haha. All of our money gets pick pocketed by our vile insurance company ;) Also, I personally found this -> http://alturl.com/9abfh very helpful for me when I started gaining understanding of her diagnosis. It'd be great if you could read it :)
If you are a Facebook/insta friend, sweet messages from random strangers to social media friends have been so valuable this last year. Please send those as often as you like :)
