Skip to content

Labels and Reunions

I’ve had this 18 years and I still have a hard time saying the words sometimes…
I have Rheumatoid Arthritis”. Sometimes I don’t want to just because I wish it wasn’t true! It’s the words that bother me. 
The labels:  “I am sick”  “I can’t keep up with you”  “I am disabled”  “I am not normal”  “I am not well enough to do the things you do

It feels like these words are being tattooed onto my forehead as soon as I reveal what’s “wrong” with me. I’ve come to terms with having this disease and I’ve even come to terms with my fate. I’m still stuck on the labels.

I think most people get nervous when they’re going to a reunion. You worry that you’ve gained weight or that people won’t recognize you. You think about whether your life will be considered “successful” in the eyes of your peers. 


I mean, most of these people you haven’t seen in probably 10+ years and you’re worried if you’re on the same level as them in life. (..As if there were really ‘levels’..) It’s normal to feel that way! 

It can be really difficult because my normal is so different than people my age. I’m looking for treatments while they’re looking at houses. They’re experiencing morning sickness from pregnancy and I’m throwing up from chemo. It’s definitely not easy.
I’m not beyond this kind of thinking and comparing, but I need to be
I need to realize that just because I am disabled, it doesn’t mean I’m any less than my highschool friends!

I have an amazing husband who supports me in everything I do, I have friends who are always slowing down for me, I have all these readers who are fighting alongside me! Who cares what people think?! That sounds like Success to me!

Pain-o Dreams

It was a beautiful day. Bright and sunny, with not a cloud in sight as only it could be in Florida, my home state. I sat on the green, diamond patterned metal bench admiring the beauty of all that was around me when I felt a slight squeeze in my left hand, bringing me back down to planet Earth.
“Wanna go on Space Mountain?” asked my husband, his face glistening with a slight sweat but thrilled nonetheless. 
“Sure! Let’s go.” I replied, as I flashed him a grin. 
We strolled to the entrance of a very familiar indoor roller coaster without a worry in the world. As we walked through rows of metal line-forming bars, the ground sloped and the lights dimmed. Andres and I giggled as we quickly passed moving images of suns and stars and planets. As the ground continued to incline, my pace slowed. Steeper and steeper the floor angled, we joked about how much further we would have to go. Steeper and steeper- OK now- too steep. The pain came and so did the sweat as I huffed with exertion. He soon disappeared behind a corner as he sifted through the line casually. I grabbed onto the metal bars just in time. My knees, they weren’t working and the pain was too much to handle. I tried so hard to keep going, to reach the summit. I felt as though the weight of the world were crushing my now-swollen joints.
Suddenly, I wasn’t in the darkened tunnel of the line, I was in my bedroom- awake now- but something was off. Why hadn’t the pain gone away? Why were my knees and ankles still hurting as though I had just climbed a steep hill? Oh yeah… I remember now. This is just another symptom of a very familiar condition. More familiar than the entrance to my husband’s favorite ride at a popular theme park. These thoughts and images of what really happened on our Disney World vacation flooded my mind. I never climbed that steep hill. The exertion wasn’t my own, it was my husband’s as he pushed me in my wheelchair through the rows of metal bars. The only two things in common of this dream and my reality is the pain that’s always there and the happiness we shared that week. 
I smiled as I closed my eyes, realizing that even though the pain will always be there, so will the joy and the laughter Andres and I share be. And that is worth everything in the world to me. 
Hubby and I at our hotel, Disney’s Port Orleans Resort French Quarter


—Based on true events—



5. Acceptance

If this isn’t crippled, then I don’t know what is…
The scariest part is realizing I’ve already accepted it. I’m not angry. I’m not sad. I’m not even embarrassed anymore.
           This is me. This is my ‘normal.’

My family and friends have accepted it as well. I don’t get the, “So today’s a bad day, huh?” comments anymore when they see me with my boat (aka: walker). They know. Everyday is a bad day. The pain is at a constant ‘9’ and the swelling means my favorite skinny jeans aren’t even an option anymore. People rarely make fun of me anymore. I guess this “invisible illness” is beginning to be visible. The only thing I had left was the ability to drive and now that’s basically gone too. 


I’m done trying to hide my boat or use it only when the pain gets unbearable. Why? Because its constantly unbearable and I’m exhausted
Exhausted of pushing myself beyond the point of no return just to keep this secret. This secret that I can do more than I really can. That I don’t need you to help me. I can’t carry my dirty clothes to the laundry room. I can’t change my own sheets or cut my own meat or style my own hair. I can barely stand up in the shower for more than 5 minutes! I can’t keep all this a secret any longer and I need be honest

So here I am, being honest:

There’s a lot of things I can’t do on my own. 
Your 65 year old grandmother can probably do more things than me, but that’s OK. 
I love being me and even though I am practically crippled, there is one thing I can still depend on being able to do…
I can still laugh and I can still have fun, no matter what happens to me. Even if I never find a treatment that works and I never gain my independence, I know I will always be able to smile and enjoy my life. 
%d bloggers like this: