Every year about this time, I write a post similar to this one. Then I don’t publish it, out of concern that my words would be misread or misunderstood. This year I decided to go ahead and hit that publish button.
For the past ten years, the constants of my life have been that I am a writer, a mom, a wife, an accountant, a homeschooler. But four years ago, that shifted dramatically. Very suddenly I found myself sure I was going to die, dealing with daily chest pains and blacking out and heart racing. Four months of every medical test imaginable and I was diagnosed with Dysautonomia. Since that point my life has consisted of working every day at being able to minimize my symptoms. Drinking obscene amounts of water, running nearly every day, abstaining partially or wholly from the delicious parts of life like caffeine and chocolate and sugar, IV treatments, and tracking everything imaginable to see what helps or hurts my situation.
For clarification, I actually do live a fairly normal life, but I work seriously hard at being able to do so.
There are some things I can’t fix, however. I have tried countless things to make my brain work as quickly and as wittily as it used to, and nothing seems to help. Writing takes infinitely longer, and I have shrunk my writing schedule down from 7, 6, 5, 4, 3, times a week to the current 2 and sometimes only 1 time a week. If I happen to go back and read something that I wrote more than four years ago, I end up in a funk for a couple of days because it makes me so mad at how well my mind formerly functioned. And then it frightens me that my brain is in a continuing state of decline, and it’s going to get even worse.
Every year about this time, when my Dysautonomia gets especially rough (thanks, summer) and my brain gets unendingly fuzzy, I struggle with whether I should continue writing, or if I should take that pressure off of myself and quit while I’m ahead. Other times I glance at my blog’s dwindling visitor numbers and ponder whether I’m like a sitcom that’s gone three seasons too long.
But then I remember that the real reason I’m writing is for my children to read. They have 2,100+ posts over nearly ten years, many documenting their lives, and they already enjoy reading and hearing the stories I’ve captured here. Although Ali has reached the age where I don’t write about her as much because she deserves her privacy, Noah still has a lot of childhood left to document. And so I convince myself to keep writing – to not care if I’m boring people or losing readers with my diminished ability to craft words in a captivating manner. I write for the reason I started writing – to record our own personal history book.
(It really is hard to remember that because I love you all so much, and the hundreds of relationships I’ve birthed out of writing are precious to me. But at the end of the day, I try (but often fail) not to stress about my writing.)
So if I don’t write as often as I used to, or if you also notice that my writing style has drastically shifted, or if I take a long quiet break, please know that I’m probably somewhere, racking my brain for words and original thought, frustrated that I can’t remember how to think creatively.
But as hard as the writing loss has been, from the journey of dysautonomia came my love for photography. Because when my brain was too foggy to form words, I could still tell stories in picture. And since I was now forced to exercise to stay lucid, I was seeing (and appreciating) more of my surrounding world on the daily.
From that birthed Picture Birmingham, my photography business where I sell my prints, note cards, and other photo art products so that I can donate all the profits to The WellHouse, a ministry that helps rescue and care for victims of human trafficking. In the three years of Picture Birmingham’s existence, it has raised over $15,000 for The WellHouse – and zero dollars of that would have existed if I hadn’t gotten dysautonomia.
So although my daily life is affected in annoying and constant ways, and although my ability to craft words and love for writing has been decimated, and although I have to work every day to live normally, dysautonomia has forced me to LIVE to be able to live – and therefore, to help my children also live a life full of seeing our beautiful world. It has forced me to appreciate my state, to explore, to engage in nature, and to do crazy things like go in a wet cave and climb on a slippery pedestal above a 50 foot drop.
It has changed who I am and what I value. It has given me an appreciation for this spectacular world and an ability to go explore it. It has given me the opportunity to use those explorations to help women that are suffering in ways that I cannot imagine.
So yes, I have an incurable illness. And yes, that’s really stupid and annoying. But as illnesses go, this one does have its blessings. And I am, (at least some of the time,) okay with that.
Loved it! Praying for you my friend!! and yes, I said friend….i know we have chatted occasionally, but reading your posts, seeing your pix….i feel as if you are a friend…..
Thank you so much! I consider all of you friends as well!
I love you and still enjoy reading what you have to say. Even though you may feel your writing is not at its best, it is still infinitely better that anything I could come up with. So happy that you have been able to find other outlets that bring you normalcy and most importantly joy!
Thank you! I think you could write some fantastic stories – you sure do tell great stories!
Your photography is beautiful. So are your words. Remember that everything you write and photograph will be memories for yourself, Chris, and the kids.
Thank you so much! That is my hope!
Love your writing. Love your photos. Love your adventures. You are incredibly brave! I’m so sorry you have to deal with this. Thank you for documenting and sharing. Your blog is in my top three, probably #1. You are unique and down to earth. I wish you well on this journey of life. I’ll keep reading no matter how often you write and no matter how your style changes. Thank you, Rachel!
Aww thanks!! I don’t know that I deserve a top 3 spot, but I’ll take it!!
I love reading your posts. Know that even if you take a break, we will be here waiting for you when you return.
Thank you so much!
You brought me to tears with this post. I’m so glad that you are able to turn your trial into blessing for others and to see the good in the bad.
Thank you! It was hard to write, but I think necessary.
I love all your posts and all of your pictures and you have made me want to get out and explore my own state as well as yours! If you take a break I understand and will be right here waiting for you if/when you come back.
Thank you!! I appreciate it, and I’m glad y’all have gotten out and explored!!
Thank you for publishing this time. I’m sorry for what you’re going through but reading about how it’s changed you (and raised all that money!) gave me goosebumps. My husband has a degenerative disease so I understand the way that can change one’s perspective. Kudos to you for putting in the effort to maintain your health. Also it’s good to hear about people’s real life struggles. Social media has a way of misrepresenting reality. Friends of mine are always commenting about how many fun things we do and places we visit. We are the biggest couch potatoes! But I don’t post those pics. Wishing you well and please keep writing, even if it’s only occasionally.
Thank you! Diseases are the worst. I’m so sorry you’re dealing with that through your husband as well.
I still read along, and enjoy your blog! I’m so sorry you have to struggle with Dysautonomia, but I will continue to read and keep you in my thoughts! :)
Thank you so much!
I love you whether you write daily or less than=) I’m sorry things have gotten worse but I admire your attitude about it. And don’t worry. Football season is coming with cooler weather and all sorts of fun! And hey, come west if you need a break to cool down! =)
Thank you! I would LOVE to be able to travel far enough to cool down. I really should check on plane ticket prices more often. :-)
Sending so much love, Rachel!! Your writing still brings me SO much laughter and joy, and I for one hadn’t noticed a change in style or a die crease in frequency. I just appreciate (with a big grin and laughter) what I do read of yours! You are contributing so much value to the world, even though it iita snit how you are used to (and that must be immeasurable hard, I get that).
Thank you so much for writing this post. It’s good to hear how you are really doing with dysautonomia. I had been wondering. I so admire what this post shows of your ability to (or attempt to) see the positive in something really hard. Well done!!
<3 <3
P.S. Crunchy is still here with me in Cape Town. But he's no longer on my fridge. My sisters told me I had to take him down before I rented out my apartment on AiBnB. Apparently no one else appreciates his awesomeness ….
Thank you!! I’m so glad Crunchy is still around, and I guess I understand why he can’t be on the fridge. But really – do you want people staying in your house that can’t appreciate quality roadkill photography? Then again, maybe you’d ONLY want those kinds of people… ;-)
I am still so sorry that you have to deal with this on a daily basis, but I so admire your outlook and the way you have used it to bring about good things. 15,000?!? That’s amazing!!! And so are you!
Thank you! I’m thankful for your friendship over the years. And we would’ve never met had it not been for writing!
I thoroughly enjoy reading your words, and although I don’t comment that often, your blog is one I look forward to reading. I’m so sorry that you are struggling, but your honesty and candor inspire others. You are amazing. Thank you for sharing yourself and your family with us.
Thank you so much!
I’m glad you published this. You are a strong woman and you still have much to give. You may find that your writing is not as ‘inspired’ as it maybe once was, but for me, at least, you are still funny and insightful and I still enjoy your posts.
Don’t give up on yourself. Just keep at it as long as you enjoy it.
Thank you!! I appreciate it!
So, so beautiful!
Thank you!
I am from Italy. We are far, you do not know me, but your blog has been among my favourites on my browser for years, because you bring me a lot of joy, even you write less than before. Thanks for the fun, thanks for showing the hilarious side of dead animals, thanks for the opportunity to see Alabama through your photos,. You are amazing and even if you decide that you don’t feel like writing anymore, I”ll be grateful for the laughs you gave me,
Thank you, Paola! And thanks for taking the time to write and encourage. Your words are very sweet!!
Thank you, Rachel, for your honest and beautiful post. I follow your blog regularly and am amused, educated, and uplifted by your words and pictures. It is amazing that you have raised that much for TheWellHouse. What a gift that is to them and to the cause that they support! Of course I love seeing pictures of my family on your blog (that’s what got me started), but your wit, humor and creativity are what keep me going. You continue to amaze me through the way you cope with your illness, and you inspire those of us who know you. Thank you for keeping on when the way is tough. It is a gift to all your readers, and to your family and friends.
Thank you so much!! You are always a joy and encouragement. :-)
I think that’s a wonderful reason to write — for loved ones. In that one regard, we should all be so lucky.
I wish you only the best.
Thank you so much!
Thank you for sharing! I truly love reading your blog, and I am always excited and eager to read a new post. it’s ALWAYS a bright spot in my day.I read it through RSS feed in my email account and I don’t know if that shows up as having ‘visited your blog.’
Thank you! Yes, I forget about RSS feeds. I never count them in my stats. But you all are totally countable! :-)
Thank you for trusting your readers/friends with your story! Whether you write once a month, once a week or once a year, I always enjoy your stories and observations! Your photographic tales are amazing as well! You are inspiring – I don’t think anyone would ever guess you’ve been beleaguered by a serious illness! Looking forward to more of your stories – whenever they come!
Thank you so much!
I love your posts and this one explained things I hadn’t realized about your medical condition. I admire your pushing yourself and the blessings of discovering photography. Your pics brighten the day for so many people. Writing your kids’ daily lives is priceless. Thanks for allowing us to come along for the run.
I have dysautonomia but I’m so happy it kind of birthed Picture Birmingham! Love you, friend.
Hi Rachel I am new to your blog, what you wrote was beautiful, sad & at the same time gives hope & positivity, sad to read that your going through this, to you & your family
Daisy
Thank you! And nice to meet you!
My niece put me onto your blog, and I read about the illness you have. Course I didn’t read you three years ago, but I enjoy reading your thoughts now, and it flowed so easily. I am old, and have been sorrowful?, feeling intrepid?, for years about the words that have dropped out of my brain, as alzheimers? approaches. I used to write well, with intricate meanings, but now I seem to only be able to remember the generic words, like “good” or “beautiful”, not the more expansive meanings I want to convey. It was my “plan” to write once I retired, but along with retirement, comes some aging of the brain cells …. so we’ll see if I can bang out an interesting book before …….
Thanks for your words.
Thanks for commenting! I understand how you feel and am sorry you’ve had trouble writing. It’s such a frustrating feeling!!