I’ve had many nights over the past seven years where all I could do was lie on the couch begging for mercy, hoping relief would come soon. In the patient community we call that Painsomnia.
For the 1st time since I was diagnosed with rheumatoid arthritis then fibromyalgia my pain is the best it’s ever been. I have bad episodes, especially in the cold. But they are less intense and further apart. I’m constantly in pain but now I’m a 3 or 4 between pain spikes instead of a 6 or 7 on the pain scale. That is huge for me. I never thought it could get here. Since my diagnosis I just keep adding issues, syndromes, disorders and diseases. I’m like a terrified snowball that’s rolling downhill but can’t stop.
That terror is why I can’t sleep at night, even when the pain isn’t so bad. My brain spins and my heart fears the next big episode.
I know what it’s like to be so out of breath from inflammation that I can barely walk across a room. I know what it’s like to need help from others to get dressed or undressed when I was in my early 30’s. I know what it’s like to have kids who aren’t even 10 years old doing things for me because the pain is so bad my hips have locked up and I can’t get off the couch.
The pain episodes have been so bad that I’m terrified to wake up in a flare. I’m terrified to go back to sausage fingers and squishy fluid in my feet in the morning. Im terrified that I won’t be able to hold my arms above my shoulders again to blow-dry my hair. I’m terrified that my pain will be so bad it’ll trigger an RA flare, then trigger a fibro flare and simultaneously trigger a sensory overload episode. I’m afraid my body will collapse into itself in an implosion worthy of Star Trek and Captain Picard himself.
My brain swirls with memories of loss and ache and dependence and horrifying pain that would curl your toes and cause abled folks to crumple.
I have always risen. I am resilient like a fresh rubber ball with valuable bumps that create an unplanned trajectory. I know I can handle whatever comes my way.
But this tornado of anxiety in my chest threatens to rip my ribcage open and spill my internals onto the floor in an unapologetic mess. It chases away peace of mind and tranquility. It banishes power and courage to the recesses of the room where light doesn’t dare to tread. Instead I am left with a trepidation and a fear and a head full of panic-inducing predictions of what is to come.
There is nothing rational about my mind or my thoughts.
There is only fear.
There is only the tornado bursting from my ribcage.
Below is my speech from the Stanford University Medicine X – ED conference in April 2017 where I was a featured ePatient speaker on the main stage. I have adapted a few things to update the time frames and a few events, but otherwise the speech is the same. I have also used some of the artwork I featured in my PowerPoint presentation that day. I hope this speaks to you because I poured my heart and passion into this idea that doctors need to treat us as more than just a list of symptoms and help us process the life-changing diseases we deal with on a regular basis.
Expressing my journey gives me power. It is my conduit for progress and processing the pain. It is how I get up each day, my body having betrayed me almost seven years ago first with rheumatoid arthritis, then fibromyalgia, then osteoarthritis from the RA, chronic anemia, hypothyroidism, sensory processing disorder and finally (because the list is actually longer) something as of yet undiagnosed.
It is how I muddle through hard decisions about exposing the rawness and vulnerability
of living with multiple chronic illnesses to strangers, friends, and coworkers.
Expressing myself is how I dealt with the additional pressure of having had a husband with RA, fibromyalgia, ankylosing spondylitis, and scoliosis. It is also how I got outside myself to be the best mom I could be to the two wonderful kids I had the privilege of raising for over seven years. It has helped me cope with the loss of all of them in separation and divorce this year.
My quest to process my experience and express myself began with blogging for Creaky Joints almost 3 years ago – which gave me a connection, an ability to reach into the darkness and touch another. Then as an artist, my art began morphing into the effort of expressing my pain and experience after a bad fall where I tore ligaments in my foot and ankle. It has helped me face my diseases in the ever-spinning grief cycle of anger, sadness, acceptance, and bartering that so often brings me back into my Self.
My art helps me to reach inward, grab what I find and fling it back into the world. Art is how I figure out the mess of who I am in spite of my disease and because of my disease and beyond my disease. It helps me grab the hand of another who is on the chronic journey, squeeze tightly and hold on as I face the future. It’s a way to reach outside myself when words are minute and fragile and limp in the face of so much fear, sorrow, sadness and pain.
I find power in artists such as Frida Kahlo. She was honest with her body and she was honest with her pain. When she lost a child, she painted it. When she was in so much pain it felt like nails were being driven into her skin…she painted it.
August Renoir developed rheumatoid arthritis when he was 55. His rheumatoid arthritis became severe about 10 years later and he ended up crippled in a wheelchair, with the usual deformity of fingers, hands, feet, legs. Renoir – whose paintings still move us today. Despite the pain and the agonizing life he lived without the treatment options we have today, he went back again and again to his canvas. He had a special canvas and chair made so he could keep on painting. His son would bring him to paint every day to continue working on his pieces. His most famous works of art were done after he developed the disease, including over 250 works of art found around the world in art museums.
In an article that gathered results from studies of art for people across the spectrum – including chronic illness patients, cancer survivors, abuse survivors, and children, the results were clear – there are tangible resultsin the lives of people who use art as therapy and as a creative expression.
It decreases pain levels, increases the ability to make decisions and helps people process what is happening in their lives. A woman named Grandma Layton, who lived 30 minutes away from where I grew up in Kansas, suffered from chronic depression all her life. She began drawing at age 68 using a method called contour drawing. Through this medium doing self-portraits she was able to work through her depression and become confident and happy for the first time in her life.
I don’t feel sorry for myself and would never ask another to feel sorry for me either. I don’t want my disease to define me. I don’t want YOU to define me by my disease. As patients, we are not just our symptoms and we are not just our pain and we are not just our diseases. As doctors, health care providers, and loved ones it is imperative that you see this. Push us to become creative. Push us into art and crafts and self-expression. Push us to share and feel and know ourselves better. We need it and so do you!
Additional links and information:
A video showing Renoir painting after much damage was done to his body: August Renoir
This piece discusses in detail how Renoir adapted to his life with RA, with no real treatment, but painted anyways: Coping strategies.
This Grandma Layton website shows her different pieces of artwork and talks about her lifelong journey and struggle with mental health. You can even purchase prints of her work if you are interested.
Frida Kahlo information is here. It discusses her work, what she was known for, her style, how she painted her pain, and it shows what her artwork looks like.
Additionally, here are some of the studies I reviewed when preparing for my speech that discuss the power of art as a healing force in the life of patients. But, not just patients – chronic life patients who deal with an ongoing battle for a better quality of life when it comes to their health:
Art is powerful and should move you. I hope this blog has moved you, even motivated you to be creative. Take what you know and what you like to do and just do it! Find inventive and unusual ways to be creative because it will change your life.
I realized while driving to a doctor’s appointment alone the other day that I don’t have the crushing loneliness that plagued me in my relationship with my ex. Loneliness had a black, shadowy form and fierce persistence that would squeeze me every time I felt happy or a little better physically.
I paused, looked around and breathed deeply as I felt the thrum of the car underneath me. I didn’t feel it sitting on my chest crushing me….
Loneliness has haunted me my whole life in both smaller and larger ways. As a child I grew up feeling alone and lonely in my family, with my friends, and in my church. I had rare moments where I forgot about it – where I lost myself and life was easy and free for just a second. But those moments were like a cool, humidity free day in southern Texas – almost unheard of.
Instead I would stand in a room full of people I knew and feel disconnected. Even when I had someone who reached out and touched me it felt weird and scary. It was always awkward and often felt forced. At times I felt like I floated somewhere outside my own flesh. And, there were times when my voice sounded tinny, resonating with an echo like I was yelling down a cave searching for someone.
How connected I felt to those around me changed how grounded and inside my skin I felt. When I felt loved and bound to those around me, which did not happen until I was 15 years old, I felt closer to others and less lonely. But it always waxed and waned. In fact, it was so common that I stopped trying to get rid of the disconnection and loneliness. I knew it would grow or shrink on its own based on my life.
The Shadowy Force
At first, it hid in the shadows with my ex. It was still present but flitted behind the couch or to the shadows in the other room. It watched and waited and wanted to be closer. Then, as things got more tough with my ex and he began to lie to me, loneliness got closer and closer until it walked in stride with me on a daily basis and ultimately began sitting on my chest.
Once loneliness sat on me my breathing got tighter and tighter. My world started to shrink and no matter what I did it was breathing in my face and chomping at the edges of my memories. In the most intimate emotional moments it was still there staring back at me taking up more space and getting bigger and bigger with its black nothingness.
This is why I was shocked that I could breathe freely. It’s why I was shocked that even though I am alone and making very hard choices, I don’t feel alone. Surprise lit up my consciousness when I looked at the depression and anxiety in my life and they were not drowned out by loneliness.
Being alone thrills me. Having friends delights me. Having a social life, such as it is with a chronic illness, has filled in the circle. I find myself happy and grateful and filled to the brim with liquid that heals and refreshes. I am no longer drowning in dark, black loneliness. Instead I am swimming in a natural spring that is giving me my life back.
Maybe I don’t feel lonely anymore because I had a dear friend say to me, “Sounds like your life is falling apart right now. Sometimes it has to do that so it can be built back up in a good way. You have a chance to start over.”
I was diagnosed with RA six years ago this week. A few months and a whole panic attack later, I was diagnosed with fibromyalgia. Then it was like my body was in a race to get just about every possible annoying and difficult autoimmune to complement the first and beastly RA. I am celiac, hypothyroid, have struggled with anemia, have some form of inflammatory arthritis in my spine, osteoarthritis in my hips and knees, herniated and bulging discs in both my neck and mid back, am close to fusing there also along with degenerative arthritis in my spine and some lovely neuropathy to boot.
Suffice it to say my body has been throwing awful fits for the last six years – like a child stuck in their terrible threes. Terrible two’s are a misnomer. Believe me folks, the terrible threes are worse. And so I feel like I have a toddler who likes to throw tantrums, scream, kick, and just fight me at every turn instead of a grown woman’s body. I live with pain 24/7. It is never a matter of “if” I am in pain, but how much and where it is focused.
And I know I am not the only one. So many of us have multiple autoimmune diseases, additional health complications, and we just suffer and struggle and fight our bodies on a daily basis trying to soothe and calm them the best way we know how.
Art is my Passion
This is where my hobbies come in. If you know me well, then you know several things about me – I am analytical and I am an artist. Art is my passion and my sanity. Art allows me to pull my attention away from my pain and focus on something relaxing and powerful. I get to get my hands dirty and in the process create something that I am proud of. Now, not everything is a masterpiece. But the attempts in between pieces helps to hone my skill set.
Many people nowadays do digital art. It is a huge field and it permeates everything that entertains us. But I stick to creating with my hands. I love how the paper feels sliding under my hand. I love how the shavings create a trail of my efforts that sit in a lovely pile beside me on the table. It makes me smile when I get my hands so dirty that I have to wash them after working on a piece of art. I can look up at it and know that I put a piece of myself on that paper. It is me looking out from that page. It reflects my mind and my heart that transcends words or discourse.
And, that is the amazing thing about creating art. I am definitely a talker, but there are times when words just are not enough. There is no full, good, or creative enough way to describe my moment with my disease. Many times I don’t have the energy to even try. When my life is really hard, when I get overwhelmed by what is happening I shut down. Creating art is my way of finding that expression in those lonely, empty moments.
Showing my Disease
More recently I have begun to focus on expressing moments of my disease. I fell down two steps over a year ago and it did unbelievable damage to my foot. At the time I was on a medication that did not control my disease well. So, I had pockets of fluid like marbles pop up. There were times when I had so much fluid in my feet it felt slippery and loose when I stepped down because my bones sloshed around in the fluid puffing them up like sausages. Right now it is so bad that I am putting up with the pain until I can’t anymore. Then, I have to have surgery where they shave, fuse, and pin things together to create stability. I created a piece at that time called electric foot about my fibromyalgia and the electric shooting pain that was tormenting me almost non-stop.
Another time, I was in such a bad RA flare that I couldn’t walk. I laid on the couch with tears streaming down my cheeks. I couldn’t speak, eat, take medication, or even focus on anything. My hips were catching – not allowing me to move more than a few inches in any direction. It has been bad before, but never so bad that I couldn’t speak or focus on watching TV to distract myself. I created a graphite piece at that time called “Pain runs down my face”. That piece did and still does speak volumes about me in that moment.
Most recently, I created a piece that just doesn’t have a title. But, it is about the degeneration of my spine and my inability to do anything about it. There is a reference to Salvador Dali in the piece and it is done in charcoal, chalk, and some colored pencil. I have major damage to my spine. Those with spinal pain or disease or degeneration know how little can be done to help. It is not like a knee or a hip joint that can be replaced multiple times if need be. It just has to happen.
I try to encourage as many folks as I can to be creative and find a hobby that speaks to you or even for you. I want others to know that being creative in any way is powerful and important. Knitting, stitching, crocheting, arts and crafts, photography, writing…whatever it is that helps you relax and calm down needs to be a regular part of your life when you have a chronic illness. RA makes life so hard. Having a hobby can give you pleasure and get you through the really rough times.
So, I am going to talk about partners in a very different way. I am going to let you into a conversation I have had many times with one of my best friends (who also has RA) about dating, relationships, and partners when you have a chronic illness.
We all know that having RA is a straight up bitch. There is no way getting around it. Nothing we do or say gets away from being affected by this disease. Depending on how severe it is it can affect stepping up on curbs, opening doors, sitting up in bed, getting up and down off the toilet, whether you can get through the day without a nap and more. If it goes systemic you are looking at increased risk of heart disease and attacks, there is increased likelihood of depression because of inflammation on the brain, weakened muscles because severe pain limits movement, surgeries, and….I really could just keep adding to this list. None of this even takes into consideration developing an additional autoimmune as a co-morbidity to RA.
I believe the biggest effect it has on intimate relationships is around vulnerability. We have moments where we cannot take care of ourselves. I have had my ex and my daughter help me get dressed and undressed. At one point, I was flaring so badly he helped change my clothes and had to lift me onto the bed because I was in so much pain and so swollen that I couldn’t do it. He had to see those times when I couldn’t blow dry my hair because I could not keep my arms raised above my head. He also saw me so exhausted from pain and inflammation that I slept all day and was still tired.
More recently, I have had some wild episodes because of my sensory overload issues. Migraines have caused a full-body flare so that I couldn’t tolerate light, sound, or to be touched. I probably would have hit him at some point when he brushed up against me, but it would hurt even more to make physical contact. One migraine was so bad I threw up for several days and could not take any of my medication for my RA or my fibro. It then took me four days to get over it because I was so stiff and sore.
So, not being able to hide pain episodes or losing the ability to function and take care of yourself makes you totally exposed to whomever you end up with. And, because you cannot control these episodes it means that your partner has to have earned a very high level of trust from you. This person has to be honest, raw, and so compassionate. There is a delicate balance required here to keep a person with RA from feeling like a burden. And, because your lack of ability makes you feel even more vulnerable when your body is acting up, then it can truly become a sticky situation.
Because of this nakedness that we all experience, those of us with RA tend to hide aspects of our disease from a possible partner – rolling out over time different issues as levels of trust are earned. Many of us cannot ever get to the point where we show or talk about everything we are experiencing. Our mental health would not allow us to constantly discuss or tell about everything happening in our bodies. It would drag us down and make it hard to bounce back up.
So that partner has to take on a big responsibility – us at our weakest. That partner has to be kind to us when we cannot be kind to ourselves. That partner has to be willing to make changes at the last minute, help figure out workarounds, and really just enjoy being around us.
Also, that partner cannot only be out for themselves in a relationship. Brain fog is no joke. Neither is body fog. The last thing we need is some selfish jerk who takes advantage of our inability to think straight. We could so easily become prey in those situations. And, none of this even takes into consideration the sexual aspect and how we often struggle with body image.
So, partners are powerful and valuable and important. In the life of a person with RA, it can make or break you because of the level of openness and exposure that occurs simply because of our health issues. When we have mental health struggles on top of it, we feel that much more squeezed.
Next time you see us hesitate or constantly fret over seemingly simple relationship struggles or fears, please don’t downplay them. You must understand that the layers for us are much thicker than others ever deal with in their lifetimes. It takes us longer to trust and longer to enjoy what we find. Please be patient with us, for we are all searching for a rare and special kind of person.
One of the most frustrating aspects of dealing with this disease is learning you have limitations, which can compound and change over time. You cannot just power through a particularly painful day to get it all done anymore. You have to figure out unique and creative ways to accomplish those life tasks, and most often it will only be done on rheum time – when your body allows it.
It starts with little things like the way you open a door that is suddenly too heavy to handle. It moves on to posture, how you sit, and whether or not you can hold cups or objects in your hands. It includes dressing or undressing yourself, and even how well you can walk.
I’m a pretty practical person – if I need it I try to do it. I didn’t listen to my doctor in the beginning after my diagnosis and I have paid with unnecessary damage to my body since then. So I try to quell my stubbornness and do what needs to be done. I research and ask questions and try to figure out what has helped others so I can keep going.
I love to cook. When I have a bad day I will try to cook even while in pain. I will push through just so I can be in the kitchen fussing over a dish to make it just right. I am creative in the kitchen – I have to be when I am celiac and cannot have dairy. Eating out often or regularly is a challenge due to options and the risk of cross-contamination.
On top of all this, I just refuse to believe that having dietary restrictions or modifications means that I have to eat terrible food. If I am going to eat it why can’t it be delicious?
I consider myself a foodie. I love food, trying new food and discovering what others love to eat. I even enjoy watching chefs on TV. I just adore seeing the end result of food competitions. Food is fun and beautiful and when done right, it makes an event.
Let’s be real – cooking is so hard with an autoimmune disease. Standing, chopping, holding and carrying pans, and being able to serve food at the end after all the effort can be a challenge. If I happen to have enough energy once it’s done I find I don’t care how it looks. I wonder if it tastes good but that’s all I can muster.
I hate that this is part of my limitations. Other issues are easier to accept than this. Food is community and pleasure and good family memories. Dishes are memorable for years to come and I have had requests for the food I make – which makes me so proud.
I couldn’t just let this slip away from me. I had to figure out a way to get around my struggles, fatigue, my inability to stand for long. I had to keep my pain levels down so I could think clearly, taste clearly, and smell clearly. How could I make a dish better if I couldn’t do all those things?
So, I go for simple prep, easy assistive options, and bold flavors.
The following energy saving steps help me make sure I can still cook.
I choose simple, quick meals to make. I don’t have it in me to do something complicated and time consuming. I’ll do more if I can but simpler is better – fewer ingredients and fewer steps to completion.
Buy precut veggies and meat. This costs a little extra and I can’t always do it. But it saves my hands to buy pork for carnitas instead of the whole steak that I have to section by hand. My process goes much faster if my veggies are at least partially chopped up so I don’t tire myself out.
Simple cooking methods are best – baking, sauteing small amounts of meat at a time, using a crock pot, or cooking things that are quick like eggs. Even boiling them is good because you can get it started and sit while it boils.
Marinating meat ahead of time allows me to sit and rest if need be so that lengthens how long I can spend cooking.
If I do have to chop veggies I wash them all at once, then sit down on the couch and chop. Washing all at once removes excess walking back and forth. I love doing this because I don’t have to be on my feet and I can take my time. And sitting – well you can see the obvious rewards of that!
Soup kits and meal kits are great jumping off points because you can just cook meat to add or modify the spices. These kits are meant to be easy and short and include everything you need.
Before you start cooking try to have everything within reach – pans, measuring cups or spoons, directions, strainers, etc. Trust me – this really saves a lot of energy and keeps you from bending or reaching if you are starting to get tired in the middle of cooking.
Invest in a good standing mat. My best friend has one that is so soft and comfie I keep threatening to steal it from her. It is great for doing dishes and cooking. She got it at Bed, Bath, & Beyond.
Use a service like we have here called curbside with the H-E-B grocery company. You sign up for the list of groceries online and just arrive to pick them up. They will help you load them as well. Other services like Instacart will shop for you for a small fee, then deliver them to you. Even Uber and Lyft are in on it these days.
I have gadgets for opening bottles, always have scissors on hand because bags are so hard to open, and those square textured jar openers are great. Don’t be afraid to invest in an automatic can opener either. That movement is very difficult for our hands so the extra help is most welcome.
Don’t be afraid to try…
I am sure you could probably add some great ideas and techniques to my list. I would love to hear them. The whole point is – don’t give up on something you love. There are lots of helpful gadgets out there to get you where you need to be. I have even had a person help me in the kitchen before with smaller tasks because the point is that I just want to be in there cooking.
Finally, ask other patients what they are doing. Our people are an amazing resource of creative ideas to get the job done no matter the task.
Mental health is such a tricky subject for me as of late. I have felt like a person swinging on the tip of a pendulum with greasy hands that is about to slip off. It is hard to keep my bearings and my mind in the right spot. I just split with my husband and I no longer have my kids with me. Everything around me is shifting like tectonic plates rattling my life apart.
My body reacts to stress, weather, and its own ridiculous machinations. I have less stress because my ex is gone, but I have more stress because my kids are gone, nothing is solid – including my job, and everything is in transition. I live delicately with my own extremes just hoping that I do not fall off the tightrope. Up and down and up and down my emotions go. I am being squeezed in life like a water balloon surrounded and sat upon. At some point it feels like I will burst from emotional stress and physical pain.
In addition to all this turmoil, lovely new partners in life have stepped out of the shadows – anxiety and depression. I never knew they were there. Now, they are ever present and guiding my choices. Heart palpitations, racing thoughts, anxiety that gets more and more wound up like a child racing around the room after sucking down every bit of sugar possible – this is my life.
I live with fear that overwhelms my thoughts and all I can do is hold on until the surge is over – because I have no other choice. My mind and emotions get whipped into a tornado-like state causing destruction to my logic and stability. I can only hold on until the house is dropped on the witch and the ruby slippers appear on my feet.
Statistics say that about 40% of folks with RA struggle with depression – but I think that number is much larger. We often don’t feel safe or comfortable talking about our emotional state. I have struggled with that myself and I am much more open than most people with where I am.
Oh hell no – you have come to the wrong place if you are looking for answers or a cure. I only have coping mechanisms and techniques to help me get through. I cannot tell you life will be easy with an autoimmune disease that constantly attacks your body. I cannot say your pain will ease or that your life will get easier. In fact, the choices and decisions just get harder and more challenging.
I cannot believe the difficult decisions I have had to make over the last six years – deciding if my kids will have enough food or I get the medication that allows me to work; pushing myself just a little more so I can meet my metrics or pay for it the next day by missing work; hiding my pain and sucking up the ache inside my mind so I can feign normalcy, or being honest about the pain that makes me unable to sit all day while inflammation licks the bones in my back with searing pain.
Do I reveal my grisly struggle sooner rather than later to those I meet, or do I wait until the last minute when I feel like they are more emotionally invested in me? How much do I really talk about the pain? Am I a burden? Will the loneliness ever become easier to handle? How much guilt can I wrangle with when I continuously have to cancel or say no to social events? Is it ever possible for someone without an autoimmune disease to truly understand the severity of my daily struggle? Can an outsider truly understand what it feels like to wake up inflamed and out of breath so that lifting the hair dryer after a shower makes my arms tired like I just lifted weights? Will the burning and swelling in my shoulder joints ever translate to another person’s reality?
I honestly don’t know.
Friends & Help
All I know is I have friends and family. Amazing people who love me and encourage me and hold my hand. I get through my days because I ask for help and humbly thank those who are willing to do so. I manage because I am learning to listen to my body – including my emotions – and do what is right for me. I have to take care of myself and I know I cannot do it alone. When pain fogs my brain my best friends are always there to lovingly support me. When ache distracts me from what is important, my friends wipe that mirror clean so I can see clearly.
With the help of a therapist I am learning that putting my health first is not selfish. It is okay to say no and to make choices that are best for me – even in the face of another person’s loss. I need that outside set of eyes and ears right now because my anxiety and depression are dragging me into the bushes. I need someone to help me discover the right path, and teach me how to treat myself better instead of letting guilt and shame and anger ruin me.
It is hard and scary to know this disease will never go away. It is ominous to realize that destruction of my joints and continuous pain are my existence. Taking naps are a priority when I am tired and my body aches. Pain pills are now and will always be a part of my future.
But I only have one life to live. I will not miss it because I am bitter or angry. I try to deal with what is happening and make good choices because this is all I have. I do not want to look back over my life and see ruin and destruction. I want good times, good memories, and good love. So, I push through. I push on. I learn and I lean on those I love. That is how I take care of my mental health and live with RA.
These images are part of the view from my early morning walk with my best friend & arthritis doggie Edgar. He was really excited to go for a walk again because we missed two days due to the behemoth storm that rolled through my city and flooded areas that never get flooded.
I felt that monster the day before and the day of – exhaustion, fatigue, shortness of breath and the inability to carry a whole lot or hold anything for too long. Even my bag and cup became too much. Inflammation was making its mark and screaming in my ear. It latched onto my bones like sandbags that were sucking me under the quicksand.
So Edgar sensed my waning strength and waited patiently to walk again.
It was magnificent. Despite the 95% humidity it was relaxing and refreshing to be outside. Every time I got caught up in the thunderclap of thoughts in my head, I’d look up to recenter myself. Immediately it’d involuntarily cause me to take a deep breath and smile.
The sky is the ultimate piece of art, don’t you think? I always wistfully wish I could capture the magnificent light, the power of the clouds, and the light that thrills me. Maybe someday I will. In the meantime, I understand Monet’s obsession with the lillies. His bent towards capturing their astounding beauty in 250 paintings licks my ears knowingly. Spending over 30 years in the quest to capture changing light and fleeting beauty makes sense to me. Who wouldn’t want to try to capture that breathtaking moment to share with another, despite the fact that it trickles away in the time spent doing so?
I would love to hear from you – what do you find breathtakingly beautiful? What do you want to capture and share with another despite your pain or circumstances?
“We all have limitations, we just need to stop defining those limitations based solely on the experience of able-bodied people.”
An absolutely brilliant piece of work that is thoughtful, insightful, and a needed challenge to society’s understanding of the value of a disabled person and what constitutes work. I really love Charis’ work. She is definitely worth a follow!
I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?
The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.
You usually have to be literally dying to be automatically granted disability in the USA.