For whatever reason, I have always been hesitant to talk about pain. I live in pain, but I’m not bothered by that and I never felt the need to bother anyone else with it, either. I’ve always been of the mindset that if I take care of myself, and I see the best parts of life, then I can manage day to day. This method is working splendidly for me.
I have Fibromyalgia, which is categorized as wide spread pain. Not very specific. For me, it manifests in joint pain akin to arthritis, chronic fatigue, and extreme body sensitivity. This means hugs hurt me (sadly). It means that I feel a lot more pain when I am touched than the average person would.
That’s just an overview, not a pity party. I don’t mind having Fibromyalgia too much. Some days it’s tougher than others, but I have a really annoyingly positive attitude about it and I don’t dwell on it. I have it easier than a lot of people.
My friends are often annoyed with me because I won’t talk about it or say when I’m not feeling well. How I’ve personally lived my life is to keep my pains to myself and deal with it by myself. I’m not saying this method is healthy; it is just what I’ve done.
So, talking about it openly doesn’t feel great. But, I had a few emails from people recently asking if I would talk about it, so I have. And, I created two images that represent how pain feels to me.
1. I always get 7-9 hours of sleep per night. I don’t have kids so that’s point one. But nonetheless, I prioritize sleep like no one’s business. I usually go to sleep between 9-10pm, and wake up between 5-6am.
2. I eat a whole foods, plant based diet largely without sugar. That works well for me personally: I am not attempting to give nutrition advise.
(Speaking of…I’m about to go slice a fresh loaf of this bread that I’ll smear with avocado. My favorite breakfast!)
3. I see beauty in pain. I really do. It inspires me and I create from it often. I let my poses, my emotions be dictated by what pain feels like to me.
4. I carry light-weight equipment. This has made a HUGE impact in my life. My gear that helps me travel light is: Sony a7rii (mirrorless, full frame camera), 3 Legged Thing tripod (carbon fiber, folds really small), and a Microsoft Surface Pro (laptop under 3lbs!). I use roller bags where possible because I also have nerve damage in my back.
5. I have a gratitude practice.
6. I build downtime into my day. I know that I have energy and feel best in the mornings. I do not, unless it is absolutely necessary, work past 7pm. I let myself relax from that time until I go to sleep.
7. I exercise, lightly. I do yoga everyday and hike 2-3 times a week.
8. A common effect of Fibromyalgia is bad memory. I have it in abundance. I keep to do lists and charts to keep myself organized. This helps to get me excited about finishing a goal as well as keeps my brain straight!
I know that there are people living in pain far, far worse than mine. And there are people who have never lived in pain. No matter your experience, I hope this sheds some insight into working through adversity.
At the end of the day, I have a passion that cannot be silenced. I try not to let time get in the way of pursuing that dream. What I mean by that is this: It might take me longer than I think it should to get some tasks finished. I might need to rest and take care of my body before I can move on and conquer. I’m learning to be okay with that. Passion and dreams do not have an expiration date. Take your abilities one step at a time.
I created these two images based on how I feel in pain.
One, a ripping apart of the body, an explosion within.
The other, a sinking, suffocating feeling as time passes you by.
Maybe one of these images resonate with you. Maybe you know the feeling.
Els Aartse - Dear Brooke, We posted our image at the same time so I noticed just a moment ago. That’s why I have read about you story of having to deal with your pain and to see your two beautiful images about how you experience that. I made my second image today of a knew series about the pain that comes from being in a narcissistic relationship. The pain for me is now gone but the wounds are still there. And therefor I make art and tell my story so I hopefully can make others see that because of your own pain you can learn from it and help and inspire others. Like you have so much inspired me dear brooke. Because you have helped me to make honest and vulnerable art. And I want to say thank you. Big hugs. I think one day we meet. 🙂
Jon Miller - Hi Brooke, I can relate regarding pain, 18 months ago I had an injury where I smashed both my feet and as a result I’ve had surgery 11 months later and live in constant pain from the nerve damage and a damaged vein vale (vein re-flux) which for some reason the surgeon wont fix as of today. I have since developed CRSP (Complex Regional Pain Syndrome) my right foot which was damaged more is in a constant state of pain due to the swelling from the vein re-flux, nerves are constantly shooting in the foot, the toes and heel have no feeling. They have me on heavy drugs but they are doing nothing I get about 2-4 hours sleep if I’m lucky some nights I do not sleep at all. So to take my mind off of this I create images and send them to art shows and I struggle through shoots by sitting during the entire shoot, yes I’ve had to move my studio in my home. So instead of concentrating on the constant pain I try to block it from taking up a lot of my time by creating art.
the images are on my website in the fine art area.
Gallagher Green - Do you have a link to your website? I would love to see your work.
I love the way you are dealing with your pain by doing what you love, wonderful! <3
Jon Miller - Gallagher Green – Some of the images are NSFW so please be aware if viewing from work.
Go to Galleries click on either Fine art or Fine Art Nudes.
Gallagher Green - Wonderful work Jon, I really love it! <3
paulla kosta - Hi Brooke,
Living with bipolar disorder from the age of 25 and hip dysplasia since I was born, I can totally resonate with you, your work. I go through pain a lot of times. I see beauty in pain too, can’t always explain why but I do. And try to express it in my work which is in a facebook blog: Autolove_Project. I received a very warming comment from you which I’ll never forget. Keep creating and inspiring.
Looking forward to hearing from you.
Hug (very gentle one)
PS: don’t know how to post a photo here so here’s the link
Cindy V - I have a dear friend who has fibromyalgia, so I know what she deals with. I will try to be a little more gentle with my hugs but I know how much you love them so I will keep giving them. I hope they find a cure soon for this disease.
Regarding Utah, OMG it is one of my all time favorite places. I have been to all those places. I tell people to just skip the Grand Canyon and go to Bryce. I love it and Zion, but the first time I visited Arches NP it actually brought tears to my eyes. I can think of no other landscape that is more magical that those found in Southern Utah. Perhaps a future location for PPC?
Kristy Slicker - I can relate. I have suffered from fibro, scoliosis, and anxiety/panic for years. There are those who call me a “shut in” and give me a hard time because I do not venture out and associate like everyone else and there are those who understand. I love that you kind of accept and work with your condition, I guess maybe instead of fighting things like I always do, I should maybe relax and try to work with it as well – see what comes out of it.
Lisa Blevins - I have been bed ridden nearly two yrs with pain .
I have Lupus, Fibromyalgia , CRPS, and nerve damage
in my hip and back . I just currently had a face biopsy because lupus is
Currently attacking my salvia glands .
My pain is so much there’s hardly a day that goes by
I don’t cry due to the amount of pain I’m in .
I want to say thank you so so much for sharing your story about your pain .
You have inspired me and truly made me think about
pushing through the pain and creating my own feelings through my art .
The image of you covered by the clock is so true to how I feel and I’m sure many others who struggle daily .
I’ve often shared my pain as if I were in a pool, my face just barely above water , while violently moving my arms to stay a float .
I never dreamed pain would be such a huge part of my life .
Bless You Brooke for touching my heart this morning and
Giving me a wake up call . A call in which to use my pain and express it
In my work . And never give up doing something I love so much .
I have no doubt it was a God thing for me to come across your email
this morning when I needed it most .
Wow , you truly do have a beautiful
Testimony that will be touching peoples lives . I hope you continue
To talk about pain and create more images that show the anguish we suffer daily .
Gallagher Green - (Hug) <3
Jon Miller - Lisa, I can relate with the daily intense pain that makes you cry, at 63 I thought it was impossible to make me cry, unfortunately I was fooled. With this nerve damaged foot flares up its like the foot is being shot at multiple times in a 30-45 second period, the pain is so intense it brings me to my knees in tears. The drugs I’m on does nothing for it so I know each night I have to go through this. I don’t sleep because of it and that starts taking affect on the mental state. I’m lucky in that all of this is covered by insurance 100% including psych counseling, but it means nothing when the pain starts up.
All I can say is hang in there. They tell me I have 2-4 years to deal with this for complete recovery, at this time that seems like an eternity.
MUKESH SINGH CHARAN - Your page so beautiful and my page is Awesome follow is my page @kr._mukesh_singh_charan
Gallagher Green - I knew you suffered from fibromyalgia, but I didn’t know you had it at such a young age. I can’t imagine how hard that must have been.
I don’t suffer from any ailments, but the second photo “a sinking, suffocating feeling as time passes you by.” this I really related to. There isn’t a day that goes by, where I don’t think that I’m not where I want to be, that I am stuck. But I have started I group on FB for posting what you are grateful for, and that has really helped.
But just a few days ago I created a photo that fits this exactly, it is the idea that the demons inside us are our worst enemies. https://www.facebook.com/GsCreativeArts/photos/a.1439796569468241.1073741828.1439394839508414/1655559897891906/?type=3&theater
Thia was a wonderful and personal post that I am sure was hard for you, thank you so much for sharing though. (Soft Hug)
Maybe you already do, but you should eat lots of Turmeric. It helps muscle pain, joint pain, and memory. Plus a ton of other things! I think it could reincarnate the dead! LOL
Jill Terry - I would love to join your FB group for posting what you are grateful for. I so need positivity in my life!
Gallagher Green - It is a wonderful very friendly safe place to share! Here is the link. 🙂
Jill Terry - I am another who has been diagnosed with fibromyalgia, ME and CFS. I count myself lucky though as I didn’t start getting pain until I was 46 (62 now). While living in the UK I was just about housebound. Last year hubby and I moved to Fuerteventura and it has helped a bit in that I can now get out and about, albeit I still can’t walk very far. I definitely know what you mean about hugs! And have you noticed that men ALWAYS pat you on your shoulders, which sends a burning arrow of pain through you!!
My creativity seems to come and go in bouts. I’m currently in a bout where I am not creating at all. My brain just can’t seem to get going and lack of confidence doesn’t help LOL! I am new to art and do struggle. Keep telling myself to do a bit each day!!!
I have thought about using my pain in creating, but not yet tried it.
You are an inspiration to us all Brooke. Thank you!!
Marianne Goodell - Hi. First off, a compliment on how you share so much of yourself, your craft, your skills, and your heart; I love that. Thank you. I’m learning so much from you.
Secondly, I live in Utah and want to say your itinerary is great. If you end up near Salt Lake, hit any of the trails going up the canyons towards our ski resorts or head on up to the Uintah Mountains. It will be a completely different experience than what you’ll be seeing at all of the parks you’re visiting.
I hope you have a fabulous trip and if you want company on a shoot or a hike if you’re near SLC, let me know. I’d love to play.
Claudia - Dear Brooke,
Your story is really inspiring , as are your classes and photographs .. I think we all go through some kind of pain , be it physical or emotional.. . I am learning through my art to connect with it rather than avoid it, thus I used to do that. I am full of self doubt sometimes and feel as I could never be able to photograph as artistically as I wish..
Therefore I lack the discipline to go out everyday and make some images.
I m almost 60 and my energy is not up to the task sometimes. Some days, I just want to give up.. learning this about you is giving me strength to keep going and follow my passion and dream. I send you a painless virtual hug and thank you for your wonderful help , honesty and advice.
Jane Tikkkuri - Dear Brooke,
Thank you for telling your story about Fibromyalgia.
I also have it along with Rheumatoid Arthritis, Crohn’s Disease, and Osteoarthritis in my back and left knee. I also suffer with Anxiety from dealing with having multiple pain diseases. I really needed to hear your story after vending at a art show yesterday and the rain poured for three hours, it was windy and cold also. I sat there with my whole body aching wondering how I was going to get thru the next four hours. My hands were in pain from carrying and setting up my booth. My knee and back were throbbing in pain and my stomach in knots. Feeling scared and lost thinking is this it for me? Im I done pursuing my dream?
These are all the things I feel whenever I purse my passion. The frustration from dealing with all the pain that goes along with having chronic pain diseases. The road blocks that are put in front of me because of what I deal with on a daily bases. I will go out for a shoot and I feel my passion burning inside of me and when it is done the awful pain comes on full force. Sometimes the passion can not over rule the pain and I feel it while I’m shooting.
I know that there is a fire inside of me a little ember that sometimes wants to burn out and not come back. We all have that fire inside of us, its our choice to ignite it or let it burn out. I am to scared to let it burn out all the way because I fear it will be out for good. I can’t take that chance so when it turns into a ember (like at the art show) I look for inspiration from my peers and friends and I get that ember burning again!
Thank You Brooke, for sharing a part of you that is very hard to share!
Anna - Hi Brooke, thank you for sharing your story. I resonate with the first image because it also feel like a creative burst and ties in really well with your statement, “I see beauty in pain. I really do. It inspires me and I create from it often.” Keep being you. We all need a place to create from and most of us create from some sort of pain (mine is from a place of fear and personal feelings about myself). Thank you for being an inspiration <3
Sara Helwe - Hey Brooke, I remember very well, a few years ago, when I was worried about you and asked about your health condition.So sorry to know you have to go through all that.
I was diagnosed with Lupus two years ago after losing my baby when I was six months pregnant. We both have pretty much the same symptoms.
I urge you to see a good doctor because there’s constant research about chronic diseases and I’m sure there’s medication to ease your pain. I’m feeling so much better in medication, but I prefer working from home because I’m an introvert too. Being an artist is a blessing to people like us!
I love every signle piece that you do. You’re my artist idol. May God bless and protect you <3
Erika - Thank you Brooke. Not so much time ago i has been diagnosed with Tinnitus (constant ringing in the ears), before that i was so passionate about photography, and now i just sit and cry. But your message gave me hope, maybe i will be able to create again through that psychological pain. Thank you.
Vernon - Brooke, thank you for sharing this blog post. I never knew that you suffered so. It makes me think back to you workshop you gave in a college in London a few years back where you hugged everyone attending. Each hug gave you pain but you did it anyway with a smile and some kind words for us all. Thank you
Elijah Goodwin - Thanks Brooke! I’ve admired your imagery, your enthusiasm, your ability to teach, and your sci-fi/creative nerdiness (that’s a good thing) since I first saw you present on CreativeLIVE. I really appreciate you sharing this post and video. As a sufferer of chronic Lyme or post-Lyme syndrome (whatever you want to call it), I can identify with both your symptoms and the skepticism that can come from others and even unfortunately some members of the medical community. I was in the best shape of my life (and training for a 10K) when I came down with Lyme disease. The symptoms were sudden, dramatic, and scary. It started with double vision and tinnitus in the middle of teaching. By the next day I had numbness and tingling in all my limbs. I ended up in the ER several times because I kept passing out. It took seven weeks and seven doctors to get a definitive diagnosis and a doctor that was willing to treat aggressively. I’m grateful for the improvements that I’ve made since then, but I still have extreme fatigue, sleep disturbance, muscle fatigue, cognitive issues, periodic joint issues, trouble swallowing, sensitivity to vibration, cluster headaches, and periods of intense, deep, nonspecific pain (particularly when I overdo). I will talk to people about it when asked, but generally avoid talking about it or gloss over how I’m feeling. There are many days when I’m so fatigued it takes a conscious force of will to do every single little action I do throughout my day. My condition makes it nearly impossible to do any regular activity that can’t involve a flexible schedule at both micro and macro scales. I say all this, because I thank you for opening up about your pain, how it interacts with your art, and using your public persona to help others express their pain. And I hope others may identify with my story and feel inspired to share their pain, which too often goes unvoiced. I find that may pain inspires some of my more personal work. But more importantly my creative work is a salve for my pain and gives me the inspiration to keep pushing forward. Anyway, thanks for your continual inspiration and sharing.
Jak - Hi Brooke
I’ve been following your superb YouTube channel for a while now. Thank you so much for sharing your knowledge and insights – you are such an inspiration to me.
I have Ehlers-Danlos Syndrome, Mast Cell Disease and M.E./CFS. I took up photography 5 years ago and like you do lots of selfies in my spare bedroom as and when my health allows and composite them into backgrounds https://bamimages.wordpress.com/2017/11/26/selfies/#jp-carousel-353
I watched your Impostor syndrome video today which rang so many bells! My Dad constantly criticized me and even though I’m now 50 this has left me with feelings of never being good enough which I still fight. I do what I love and if others love it to that’s a bonus, and if not *I* still love it and that’s all that matters 🙂
Your videos have helped me to become a better photographer – thank you for being you and daring to be different!
Donna Hoffman - I’m waaaaay older than you and I can tell you that as you get older (past 60) and your metabolism slows along with your strength that fibromyalgia becomes more difficult to keep in check. I also have severe arthritis in my spine and every joint in my body. The arthritis exacerbates the fibro. The more pain I feel in my joints, the more pain I feel in my muscles. When I was younger, I could swim and walk and keep my muscles toned. Once I started having joints replaced and getting steroid shots in my back, my muscles were less in shape because of less movement and I started going downhill. I’m 74 now and I can’t walk for exercise. I still get in the water and walk for 30 minutes every other day, but that isn’t enough. I love all your photos especially the ones the contain water.