Seven years ago this week, I woke up sick with acute dysautonomia symptoms. I had no idea what was going on with my body and it was rather terrifying. Life’s challenges teach us the greatest lessons, so I decided to write my 2010 self a letter sharing some of what I have learned so far. -Lauren Stiles
Dear January 2, 2010 Me,
You went to sleep last night after a thrilling day of skiing and dancing until the wee hours of the morning, laughing to the point of exhaustion with good friends and loved ones. You had a nearly perfect day. But something terrible is about to happen. It won’t make sense to you at first, but the snowboarding concussion you sustained two days ago is about to wreak havoc on your whole body for years to come.
By the end of this week, you won’t be able to stand up without fainting. You will have trouble breathing, stabbing chest pains, and your GI tract will essentially stop working. Don’t be afraid. You will be OK, eventually, but you are about to begin a difficult journey. Dig deep into your soul to find your strength and resilience, because you’re going to need it.
Over the next two years, you will get to know the ceiling tiles in the local Emergency Room quite well. You will go to many doctors asking for help, but most of them will not help. Some won’t know how to help you, despite their best efforts. Others will cast doubt on you, suggesting that your symptoms are “all in your head.” Do not waste your limited energy being angry with them or trying to change their minds. This is a reflection of their ignorance. You deserve better. Keep searching until you find doctors who believe you, who want to help you, and who have the expertise needed to help you. You will find them, eventually. Do not give up searching for answers, even when you are told to do so.
Trust your gut instincts. After being told over and over again that you are wrong, you will have feelings of self-doubt, but do not let anyone take away your self-confidence. Everything that you feel in your gut turns out to be correct. Remember than no one knows your body better than you do. You’ve lived in it for 31 years.
As weeks turn into months, you will go from a curvy size 12 to a barely size 2. At first, you won’t mind having to borrow trendy clothes from your younger, skinnier sister. But soon you will realize this is not a healthy weight loss. Your GI tract will not properly absorb nutrients or fats. Always a hearty eater, you will enjoy increasing your caloric intake to 4,000 nutrient dense calories per day – loading up on beans, peanut butter, almonds, meat, protein shakes – it doesn’t matter, you will keep losing weight. Your doctor will assume you have an eating disorder, even though you are doing everything humanly possible to gain weight. Your hair will start falling out, but you will get it back, eventually.
As the months wear on, you will find out who is a true friend and who is merely window dressing. While it is certainly unpleasant to learn that you do not really matter in the lives of some people you thought you mattered to, consider this a blessing. In your life, version 2.0, you will be able to focus on relationships that bring you as much joy as you put into them.
Your love of science will play an important role on this journey. Ignore those who tell you to stop reading medical journals, and those who insinuate that you are not intelligent enough to understand what you are reading. Not only will your insatiable curiosity lead to you figuring out your own diagnosis, it will lead to you conducting medical research and publishing journal articles. You won’t believe this right now, but you’re going to lecture at Harvard Medical School someday. Keep reading. Keep asking questions. Do not be afraid to venture into the intellectual unknown.
Since it will be hard for you to sit upright or walk, your body will become very deconditioned, and this will make you feel much worse. Reversing this will be one of the hardest things you’ve ever had to do, and it will be a constant battle to prevent it from returning. The sooner you get started, the better. People will tell you to push yourself, and you will get very annoyed at them, because you think they don’t understand. They may not understand, but I do, and I’m telling you they are correct. You will never get where you want to be if you don’t push yourself with every ounce of your being. After you get your strength back, you will have to learn when to push and when to rest. It is not something that can be taught, at least not to you, because you are stubborn like your grandmother.
You will feel as though your world is falling apart, and it will. This illness will place tremendous burdens on your health, your marriage, your family, your career, your finances, and your social life. Life as you know it will be shattered, and you will have to work very hard to put the pieces back together again. Every piece of your life you reclaim will feel like a little victory. This will teach you to appreciate every blessing in your life; every moment will feel like a gift. You will rejoice at simple things that once seemed like a chore. The first time you are able to go food shopping by yourself again, you will find yourself crying tears of joy in the produce aisle. You will learn to appreciate the ants crawling in the grass on a sunny day. Sitting in your garden will preserve your sanity when you can do little else.
Your dog will be your most loyal friend during this whole ordeal. She will lay by your side day and night, giving extra kisses and snuggles when you are blue. She will keep you company when you need it. You will feel very alone at times, but you will eventually meet many new people along your journey. You will find a second family of people just like you.
When you can no longer practice law as you once did, you will feel as though you have lost your identify. You will always be a lawyer, but this identify crisis will help you figure out who you really are. At first, without the hustle and bustle of your former life, you will feel like nothing. But everyone is something, and that something is entirely up to you.
You will learn another hard lesson – that improving your health is largely in your own hands, even when you have the best doctors and best medicine available. This is an intimidating and at times frightening responsibility to accept, but the sooner you embrace it, the sooner you will realize how empowering it is.
You may not believe me for some time, but I promise this gets easier. Let go of the past, because you can’t get it back. Look towards the future and create new goals for yourself. Be thankful for the good things in your life, and no matter what happens, just keep swimming.
January 2, 2017 Me
PS – Don’t eat your mother’s meatloaf on August 14, 2012. Trust me.
PPS – At the risk of creating a galaxy destroying paradox in the space-time continuum (which we learned about in Back to the Future), I’m going to save you from two years of misdiagnosis hell and let you know that your concussion caused POTS and Sjogren’s. Find an autonomic neurologist named Kamal to get a proper diagnosis, and learn to love salt.by