The One With the Wave

Hey Friends,

Are we friends? I hope we are. 

I started this blog a while ago with the intention of creating a community. And in some ways, I have. I’ve created a place where I feel comfortable sharing my life when words bubble up inside of me that need to be said. I know that there’s a place now where I can share the hardships I’m facing in a way that maybe people can better understand. Okay–so maybe I have an audience…but not so much a community? 

Being chronically ill is isolating, y’all. Even before COVID forced me to further close my circle, it was hard for me to make friends. College kids want to go out and do things. They want to go to parties and get drunk. They want to stay up late. They want to walk places instead of spending what little money they have on Ubers. They want to eat pizza. 

And on another level completely, most people my age just haven’t lived as much life as I have. I know very few other 20 year olds who spent high school fighting for their life instead of making stupid teenage mistakes. I watch my brother go to school every day, and I think about how it may as well be a different building than the one I occasionally walked the halls of. He’s an athlete, and everyone knows his name. He goes to parties every weekend. His Instagram posts get over a thousand likes. And I wonder what it would be like to never have to feel alone. 

And now in virtual learning, I’m thriving on an academic level. I haven’t missed a single class, and we’re five weeks into the semester. That’s huge. That’s amazing. This is the first time I’ve done that since elementary school. 

Socially? There’s a girl in my Policy class who I would totally want to sit next to and talk to after class. How do we do that with Zoom? Should I send her an email and be like, “Hey! I know this is weird, but you’re the person I’d want to sit with in class, but clearly times are strange. Here’s my phone number instead”?? Is that what I’m supposed to do?

I need people. I need them. But I am painfully shy. I am so introverted. I am so afraid of judgement. Of being abandoned by yet another person who thinks they can handle my baggage and then gets scared off. Of someone thinking I’m cool and then realizing I’m flakey. Of one more human calling me “crazy” for the disabilities and mental illnesses that are outside of my control.

That’s why I started this blog, I think. Really. Ultimately. Yes, I love that I have been able to share my life with so many of you who needed or wanted to better understand. Yes, I love that so many old friends and family members who are a little too distant to talk regularly are now back in the loop. But I need some community, guys. So I’m hitting my little “wave” button. This is me waving. Share my blog with people you know who are in similar situations. With chronically ill friends. With student friends. With young adult friends. With dog mom friends. With lonely friends. I’m here for it. 

Love you, see you, bye,

Emma ❤

Why Do We Do It?

Sometimes in chronic illness we show up to class looking like a junky because we haven’t slept in too many days and we need something–anything–to reignite our will to live despite how hard our body is trying not to. We have to pull out the big gun busy toys to distract our Service Dog from his incessant alerting just so we can at least take notes on the lecture to go back and read later since nothing is being absorbed real time. But we do it. 

Why do we do it? Because I’ve been a Christian my whole life, and last night in a class focused around Biddhusm, I learned that there was an entire period in history that Christians were divided between positions–”that Christ consisted of two distinct persons, one human and one divine” and “the rival ‘monophysite’ position, that Christ was the eternal Divine Logos, incarnate as a human being.” Where was the Trinity? I dunno, but I’m gonna keep showing up to find out.

Why do we do it? Because last week I learned that at one point in the mid 1900s, General Motors had more officers in their private police force than all but the five largest city police departments in the country. Why? Like. Why? I need to know.

Why do we do it? Because three of my classes have asked me which of the three branches of the United States Government holds the most power. My answer changes with every textbook chapter we read. What does that say about the way were were set up? I think that was the intention?

Why do we do it? Because I am REALLY bad at Economics. Really bad. And I cannot afford to miss that lecture. 

We do it because fighting through the pain, the nausea, and the fatigue is worth it for the prospect of learning something mind blowing, world shifting, or thought provoking. I haven’t given up on the idea that I can still make an impact on this world despite my body being a less than stellar vehicle to get around in. So I’m gonna keep turning her engine over until she starts up each morning and gives it her best go. Charge her battery, give her some gas, and hope she keeps making it to the next stop along the way.

Mighty AU Eagle

“Hey, I’m Emma. I think I’m technically a Sophomore in CLEG. I’m studying from my house in Alabama this semester, and I am really excited for classes to be back.”

I got to say this in four different classes this week. I got to say this in four different classes this week because I am officially off of Medical Leave. Surprise!

Throughout the Coronavirus confusion with the universities, my university, American, was one of the last to decide what their plan for the fall semester would be. It was not until the first week of August that President Burwell made the final announcement that AU would be holding an entirely virtual semester with no one allowed on campus. Because the decision came so late, I had to do a lot of last minute scrambling to get myself ready to be a full time student again. Phone calls had to be made. Emails had to be sent. Doctors had to be convinced. Schedules had to be figured out. It was all a whirlwind. And even then, I wasn’t sure that it was actually a good idea. I’m still not.

As everyone else was posting their first day of class photos, I was still working with the Dean of Students Office to get the hold taken off of my student account and finalizing my schedule. I had to promise my team of physicians that I’d be taking classes from the safety of my home. I had to make sure that my previous accommodations still meet my needs. I had to go through the process of telling an entirely new set of strangers that I may or may not have a seizure on a screen in front of everyone–no worries.

My cortisol levels are off the charts low. My Crohn’s is in chaos. 

But I’m going to learn about how religions spread around the world from the lens of Buddhism. I’m going to be exposed to policy and the things that create it. I’m going to begin seeing the interworking of America’s legal system. I might even start to understand economics? 

“We are the mighty AU Eagles

If there’s a fight we’ll see it through”

AU isn’t really the type of university where you walk around campus and hear the fight song. And in the time of COVID, there’s even less school spirit. But these words have been standing out to me ever since I decided I would try to go back to school. I love being a student, and if to return to classes, I have to fight my body a little bit harder than I was last week, I’ll do it–diagnosis be damned.

Still Breathing

I’m writing this from the car on the way to my gastrointerologist’s office. I woke up this morning in a good mood. I laughed with my best friend about the way that she talked in her sleep last night. I told her about the latest show I’ve been binge watching through my insomnia.

I felt nauseated enough first thing to take Zofran with the rest of my morning meds. My abdominal pain has been at a higher level than usual the past few days. I haven’t had a real appetite in weeks. In the past 24 hours, I have had six bloody stools. It was while I was joking with my best friend that the nausea turned into a certainty that I was going to throw up, so I rushed to the bathroom. I got very sick. I came out of the bathroom disoriented, clammy, in excrutiating pain. For the first time since my Crohn’s diagnosis in 2014, I asked my mom to take me to the Emergency Room. Instead we’re going to see my doctor.


I’m writing this from the hospital. My doctor sent me to the Emergency Room after all. They are doing a CT with contrast and labs. The saline drip is cold. The contrast set me on fire. All I want is to sleep. I can’t talk through the nausea.


I’m writing this from my couch at home. Cabbage is curled up on top of me. I’ve had a long day. I’ve had a hard day. The doctor’s at Grandview ran their tests, determining that I have severe inflammation throughout my intestines with specific proctitis. This has caused my bloody stools, which has led to anemia. It’s one hell of a Crohn’s flare.

As I’m writing this, I’m thinking about all of the things the past year has thrown at me. I’m thinking about the adventures I had last August and September in D.C. with my friends. I’m thinking about how much I have grown with each new challenge. I’m thinking about the inner peace I have had to come to as my life plans just keep changing. I’m thinking about what I want to come next. I’m thinking about all the things that could possibly be next—whether I want them to be or not. I’m thinking about how I’m still breathing, so ANYTHING could be next.

💛dum spiro spero💛

While I breathe, I hope. And friends, I am still breathing.

I’m Sorry

A few days ago, the guy who I’ve been talking to shared with me that he would be playing at an open mic night in Auburn, a college town a couple hours away from where I live. My first reaction was joy. Of course I wanted to see him play. An outdoor show. I had nothing else going on Saturday to take up spoons. He could drive me there and back. I told him I would ask my parents. I was excited. 

And then the anxiety set in because ‘oh yeah, we’re living in a global pandemic, and I’m really quite sick’, so…I ghosted him. For two days. 

Then this morning–the morning of the show–I woke up feeling good. The kind of good that I hate to waste. So after five missed calls and seven unanswered texts, I decided to be super cute and text this guy like I hadn’t dropped off the face of the planet two days earlier in the middle of making plans. Like a good sport, he responded without being mad, and he answered all of the questions I threw at him about the gig. 

We were going to leave at 2:30, head to Auburn, the music would start at 6, the competition part would last until 7:30, and then the winner would play until 11. If he didn’t win, we could leave before then. The event would be outside at a cigar bar. He could get me in even though I’m not yet 21 because he knows the people in charge. We would tell people to keep their distance if they got too close. He kept telling me all the ways that it would be okay, but I kept holding off on giving him a firm decision. Everything was going to be totally fine. I kept telling myself that as I started to get ready–still not saying yes or no.

I finished getting cute. Like real cute. 

But my anxiety was getting steadily worse. 

“If I had to pee, I would have to go inside and use a bar bathroom. In the bar bathroom, I would get the Coronavirus. Once I got the Coronavirus, I would definitely die.”

“When the sun goes down, I’ll start to get chilly. Even if I bring a sweater it might not be enough to keep me from getting a real shiver like I sometimes do. If I get that shiver, I’ll probably have a convulsive seizure. He doesn’t know how to deal with that.” 

“What if Judas doesn’t wanna be out anymore and gets real angry? Again with the bar bathroom. I am not throwing up or having violent diarrhea in a bar bathroom. I am also not unbuttoning my jeans while I’m out in public with a boy I like. Oh God. What if it’s a doubled over at a 90 degree angle kind of pain night?”

“What if this is the night that I go into adrenal failure and need my emergency injection and I’m two hours away from my parents and my hospital and my medical team?”

And then my Blood Pressure dropped to 73/48.

Obviously, I can’t go with a boy to a bar two hours away. It was silly for me to think that I could. I sent him a text that said: “i can’t. it’s a bar bathroom if i have to pee. you’d have to leave if i needed to go to the hospital. i’m sorry. i’m really sorry. i’m too sick for this kind of fun adventure. i PROMISE that i will be at the next one you do in bham.”

His response? “Ok. I had no expectations.” 

Let me tell you. That stung. But the hurt came when a few minutes later he followed up with, “I just don’t get why you tried to come if you were going to just change your mind.”

Y’all, I am a twenty year old girl. I have been single for a little over a year. It is the beautiful summer time. It is so easy for my mind to get carried away with fantasies of getting dressed up and going out with the boy I like to hear him play at a bar’s open mic night. That is a normal thing for someone my age to enjoy doing without a second thought. ‘Oh that sounds like fun, let’s do it!’

That’s not my life, though. Even if I had decided to go tonight, it would have taken thought and planning. I would have had to decide if I wanted to take my wheelchair–on a first date. I would have had to pack a bag for my Service Dog and made sure he didn’t overheat, have an accident, or cause a scene because he’s never been to a live music show. I would have had to make sure I had all of my dinnertime meds and a snack to take them with, plus any extra meds I might need in an emergency. I would have needed to take my sweater even though it’s 94 degrees today because I can’t regulate my body tempurature. I would have had to call my friend in Auburn to make sure she would be okay being on standby to come get me if my body crapped out and couldn’t handle being at the event the whole time. I’m sure I’m forgetting things as I’m typing this and also that this list is getting boring, but you get the point.

I am so sorry that I let my friend down by not being able to go with him to his show. But I’m also a little sorry for me. And that’s okay. I’m not ashamed of being sorry for me. Because it’s sad. It’s hard. I’m sorry that I missed out on a fun night. I’m sorry that I didn’t make new friends with his friends. I’m sorry that I’m not in the crowd clapping for him. I’m sorry that I got cute for no reason. I’m sorry that I’m not gonna get kissed tonight. I’m sorry that I keep letting people down when they want to make plans with me, and I’m sorry that I carry so much guilt for that when really I have no control over it.

I’m sorry, Mark. 

But, Emma, darling, I am so fucking sorry.


My 90 year old great-grandfather joins our group of early morning coffee drinkers, making it a four generation circle. “Good morning, Grampa!” we all say, and someone asks, “Did you have a good sleep?”

“I must have,” he answers just as he does every morning. He’s smiling and cheerful and holding his cane but not using it.

My mom looks up at her grampa. “Can I get you a cup of coffee?”

“Oh, no,” he shakes his head, “I’ll get it myself.” He pauses a beat before adding, “I was thinking this morning that I’ve become more of a presence than a participant.”

None of us really know how to respond to this. We take it in, and I know that I am thinking he has taken care of all of us for 70 years–it seems only right that we carry his heavy bags, mow his lawn, and fetch his cups of coffee. My aunt says that he can do more. My mom laughs and tells him he can get his own damn coffee.

My sweet grampa smiles bigger and tells us, “It’s not a statement of unhappiness. It’s just a statement of isness.” 

Y’all, how good is that? How graceful? How wise?

My grampa’s 90 years have made him more of a presence than a participant and that just is. I can relate to that so much in my own way. Sure, I don’t yet have 90 years of life giving me a free pass to “sit this one out” or that have earned me the privilege of being waited on, but my illnesses weigh me down to the presence status. I used to resent that. I used to not be able to grin about it or accept the isness of it. I thought about my lack of participation with nothing but unhappiness. Not my great-grampa, though. It’s a state of isness. 

He does what he can, and when the battery on the weed eater gets low, he takes the time that it’s charging to charge his own batteries. He fills his role as storyteller, and he watches and listens to as we create our stories. He makes himself laugh. He teaches us to mix the perfect drinks. He passes on his knowledge. He loves.

I want to share the gracefulness of his isness, and I think spending time with him is helping me get there.

Like the Wind

There are these wind storms that sometimes come up when we’re on the island that are truly awesome. The trees lean as though bearing the burden the gusts put on them will bring them to the ground. Waves crash against our island and the ones scattered around us in the most painting worthy ways, warning us to not so much as attempt crossing the lake. Our belongings have to be brought inside, and all of the windows and doors must be shut up for the duration of the storm. If you have to walk across the island for any reason, you feel like your feet could be blown out from under you at any moment. Mother Nature is offering a beautifully sung reminder that she is stronger than years of root growth, any boat or captain’s skill, the screens protecting the cabins, and your footing.

a wave crashing against the shore in a wind storm

I’m laying here listening to one of these storms. The wind is making it too cold for me to do much other than burrow deeper into my blankets and get more lost in my thoughts. Watching the trees submit to the power of the gale and the way that the current in the lake  is moving in what seems to be three or four different directions has me contemplating the way that a flare stages its attack on my body. My brain has built up this idea that it is shockingly similar–this storm and the cycles of remission and flare. 

Yesterday there was a beautiful calm. The water was a perfect glass. Only the occasional breeze made itself known long enough to keep the heat from becoming overwhelming. My body sometimes settles into this same calm. These are the stretches when my pain stays at a steady six. There’s no blood in my stool. No intestinal blockages. I only double over if I eat something I shouldn’t, and really that’s on me. These are the times when my joints stay where they belong instead of popping out or grinding just along the edge of the socket. Swelling is minimal, and the knots in my muscles are comparable to what one would expect to find after working out or sitting in certain positions for too long. There are weeks between seizures. My migraine injection is doing its job. The calm is remissions from the various storms that threaten to bring me down. Remission is so so good.

When remission comes–from one thing or from all of them–I celebrate. On good days, I don’t use my wheelchair. On good days, I cook and bake. On good days, I lay out by the pool. On good days, I visit with my friends. On good days, I can be active with my family. On good days, I go to my brother’s lacrosse games. On good days, I work and play with my Service Dog. On good days, I dress cute and do my make up. When remission comes, I can remind myself that I am still a whole person with a full life.

Today the wind is howling and the water is white capping. It’s too cold for me to even sit outside, and my pain is at about an eight. There has been blood in my stool off and on for about three weeks now–most likely due to a lesion in my small intestine from a Crohn’s flare. I’m having trouble digesting solid food, which means bathroom trips within fifteen minutes of every meal I decide looks good enough to eat. There is pain everywhere, but like the trees that are leaning with the burden of the wind, I am bearing it instead of breaking. There have been many stretches in the last few days when my migraines have kept me hidden in bed, tucked away like the giant waves are keeping us from leaving this island. We get used to the constant gale, and then there will be a sudden gust of stronger wind that blows in like a seizure. My mind thinks this metaphor is clever. The wind storm is flaring, and so am I.

A few weeks ago, the wind came up with a strength that knocked over a pine tree that had been standing on this island for as long as anyone could remember. The speed of that strom’s gusts–it’s pure strength–was enough to create a mess of debris that we are still cleaning up weeks later. I am all too familiar with the flares that come on strong enough that I can’t fight them off. They land you in the hospital or make it so that you are truly bed ridden. The people around you have to help pick up the pieces of your life that have fallen apart around you. The flares that attack with this much strength are the storms that blow shingles from the roof and bring down hundred year old trees and rip boats from docks or even docks from shore. They disorient and mean recovery time that could last days or months before all evidence of the storm has been patched up.

Flares are hard. Flares hurt. I don’t want to move, and I don’t want to do anything, and I don’t want to talk about it. I keep moving, and I keep doing anything that I can power through enough to do, and this is me talking about it so maybe people can understand.

The wind outside is awesome, and honestly, so is my body.

My Island

I used to run around this island

and swim off the dock.

I used to rock climb

and pick blueberries.

I could paddle a canoe.

I was strong enough to ring the dinner bell

and wash the dishes when dinner was through.

I was awake longer than the sun.

a picture of the sun setting behind Norway Island

Now I am a poet,

a napper,

a baker,

a pill popper.

I am a dog mom,

a blogger,

a wave watcher,

and a blanket hogger.

a picture of me dressed like it’s winter…only it was taken in June

My island gives me views

no matter where I am.

I can step on a flat rock without leaving the porch,

and fresh blueberries are brought to me.

I drag my fingers while others paddle.

I hear the bell chime,

and I wait for the gathering of loved ones.

I see the sun setting as I drift in my own way. 

pater, Protector, Provider

In October, my best friend hit her breaking point. She had been watching me slowly decline physically and mentally for months. It came to a head when she saw me doubled over in pain, sobbing and unable to breathe in a Metro station under the streets of Washington D.C. as we waited for the train that would take us back towards our college campus. 

I had known for a while that it was time to tell someone with a little more life experience than my twenty year old friend how much trouble I was in. That night in the Metro was the first time I had left my dorm room for more than a run down to the convenience store on the first floor of my building in weeks. I was missing classes. Makayla was the extent of my social interaction. Shameless binges were my only source of entertainment, and even with Netflix on a steady stream, I was sleeping about eighteen hours a day. All of this was because the exhaustion was too much for me to move. Digesting any solid food was becoming impossible. I was having four to five debilitating migraine days a week–the kind where you pull the covers over your head and hope that no cars on the street get into a honking war. My skin was bruising and tearing for no good reason. My heart was racing even with my beta blocker on board, and my blood pressure would not get up to 90/60 no matter how much Midodrine I put in my body. Then there were the seizures that were coming frequently and fiercely enough that I was breaking ribs. It was bad, y’all. I was dying.

So that night in mid-October, Makayla got me back up into my dorm room, I threw up my dinner, and then I laid on my bathroom floor and called home. In tears, I confessed everything. I was terrified to tell my parents that I wasn’t going to the classes that we were paying so much for. I was scared to tell them how sick I had let myself get before finally asking for help. I was afraid that they would be angry–or worse, disappointed. 

I don’t remember now what I was expecting from my mom. I’d guess it was for her to be the voice of reason. She would tell me which doctors we needed to get in touch with, how I could better be taking care of myself, and how we would move forward with school–just like she had done dozens of times throughout high school when my health and my education just couldn’t match stride. 

For my whole life, my dad and I had had a plan that I would go to a top school and then on to do great things, so I remember vividly knowing that I was letting him down. I just knew that he was going to be upset with me for failing. He had always stood by my side and or behind me to push when I needed it. He encouraged me to make perfect grades and excel all the way through middle and high school. He put the best books by the greatest authors in my hands and started conversations on topics that would inspire me to think deeper on subjects most people my age would not give the time of day. There were times when this came across as tough, but my mom likes to remind me that my dad only ever holds me to the high expectations I set for myself. Which is true.  

a photo of me and my dad in the “V” of a tree when I was about seven

So when I got into American University in Washington, D.C., seven hundred miles from home and all of my medical team, he told me that if that is what I wanted I should go. He supported me every step of the way even though the school’s ideology does not match up with his. For the first year that I was there, he debated my professors through me, and for Christmas that year I gave him an entire semester’s worth of readings from one of my classes just because I thought he would find it fascinating. When my health got bad that first year, he talked me through it, and I managed to stay. I guess that’s why I assumed he would do that same thing when I reached out halfway through first semester my second year.

a photo of my dad and I in my Freshman dorm room

But my daddy. My daddy surprised both of us that night when I called. He told me to start packing my bags. He very calmly announced that if I was that sick, it was time to come home and regroup. In that moment, my daddy began protecting me from myself. He stopped the panicking voices in my head that were fighting over whether or not American University or my life were more important. He stopped the very persistent voice that was screaming about how I was letting him down. He stopped my tears. He provided a solution to the problem that I felt I had been facing alone. Suddenly–we were a team of three.

And we have stayed that team of three for the last eight months.

a picture of me, my mom, and my dad after my high school graduation

My father has watched over me, carefully taking in the subtle changes in the color of my face because he knows what flush and pallor indicate. He has picked me up off the floor every time that I have needed it even though it’s been too many. He has found ways to help my mom get me out of the shower while maintaining both of our modesty. He has talked me down from those moments of intense panic that my life is spiraling out of control or over completely. He has told me in the flashes of intense fear that I am not going to die because he won’t let me.   

We joke around. We talk about all of the issues of the world. We share our ideas on how to fix them. We amicably disagree in some areas because I have learned to form opinions that are not my fathers since becoming somewhat of an adult. We listen to music and watch movies. We spend time out at our pool. Sometimes he sits close by while I nap because that’s the only way that I can spend time with him that day. We are friends just as much as he is my parent and mentor. 

a photo of me and my dad at a table looking like we don’t want our picture taken

My dad protects me from myself because he knows that I am my greatest danger. My dad provides me with every single thing that I need to be successful in this life. And I am so grateful that life has shaped us into the people that we are for each other.

Double Take

I was a pre-pandemic mask wearer.

I am a Service Dog handler.

I am an ambulatory wheelchair user.

I am used to people doing a double take when they pass by me and see the abnormal way that I have to present myself to society. I am used to people staring when they see me wearing a mask as I shop at the mall. I am used to people staring because I have my Golden Retriever in Target. I am used to people staring because I use my wheelchair at my brother’s lacrosse game but park it outside the bathroom and walk in to use the toilet. 

It’s not news to me that my disabilities make me “different”. I understand that surgeons and construction workers wear masks on the job, dogs are pets that greet us when we get home from a long day at work, and wheelchairs are for people who can’t walk. Except that none of these groups are exclusive. 

Before the Coronavirus hit, I was instructed to wear a mask due to my severe Adrenal Insufficiency that makes my immune system incredibly fragile. When a healthy person’s system comes across a bacterial or viral invader, the Adrenal Glands produce an extra burst of Cortisol to compensate for the fight that’s taking place within the body to ward off the infection. Because my Adrenal Glands don’t make Cortisol, the invaders run rampant in my body, causing a more intense infection that puts my life at risk, meaning Strep or the Flu hospitalizes me. By being so high risk, it is critical that I wear a mask any time I am in a crowd–my doctor’s exact words way before COVID hit the United States. And there are lots of other people who have been told the same due to their chronic health issues such as being immuno-compromised due to illness or immuno-suppressed from certain medicines that treat things like cancer. That mask is saving our lives from your germs because our bodies can’t–please do not stare.

My dog is my hero. He saves my life on a regular basis. I could talk about him forever, telling stories about him alerting to a seizure while I was showering so that I didn’t drown or flipping my face out of a cushion so that I didn’t suffocate after I fainted. He picks me up off the floor with his bracing tasks, he knows how to make life easier on days that I am in my wheelchair, he calls my support system for help when something goes awry inside my body, and he applies pressure to the muscles that are spasming. When you see me walking or wheeling with him by my side in Target, it’s because he tells when my heart rate is so high I’m about to faint and I need to sit down so I don’t cause a scene, he picks up the boxes of pasta I drop on the floor with my Fibro hands or that are on the bottom shelf (because I WILL faint if I bend over to pick them up), and he provides a built in walker/balance support. Among many other things–all of which you can read about on his Instagram (@with.cabbage.i.can) or on his Facebook page (With Cabbage I Can). My Service Dog gives me a quality of life and an independence that I had lost–please do not stare.

I only recently began using a wheelchair part time. It changed my life. Before the chair rolled onto the scene, I had to ration my already limited number of spoons like crazy. Walking long distances is an absolute no go for me. Standing for a long period of time? Not a thing that’s going to happen. Muscle weakness is real. Fatigue is awful. Pain in my muscles and joints will often prevent me from moving my legs at all. With the wheelchair as part of my bad day–or even so-so day–supplies, I can do so much more. I can join my friends on outings to the mall. I can go to my brother’s sporting events. I can bake or cook. By having access to the wheelchair when I need it, I have the opportunity to leave my couch. When walking gets to be too much for me, it’s there. My wheelchair is there for me when my legs decide they don’t want to be anymore–please do not stare.

There are many parts of disability that can be awkward or embarrassing for us. We need assistance devices to keep us safe. For me, those things are my mask, my Service Dog, and my wheelchair. Sometimes my list includes more or less. For other people with disabilities, the list includes other things. For people in the able bodied community, all we ask is for respect, and that simply means not doing a double take or staring when you see something that you think is different or doesn’t fit what you think should be the norm.