Disability Pride Month

July is Disability Pride Month, and I admit that I did not know about it until a few weeks ago. It is meant to celebrate the passage of the Americans with Disabilities Act (ADA). Although I'm extremely grateful that this law was passed, I'm having a hard time celebrating what this means for me. Becoming disabled took so much away from me. Before I got sick, I felt like I was the strongest and healthiest I had ever been. In January 2017, my daughter and I spent 15 hours straight running around the Magic Kingdom at Walt Disney World - no naps, no breaks. In February 2017, just a few weeks after that, I couldn't even hold my head up when I sat on the couch. What gives?!?

I'm sure I'm supposed to write something inspiring about how I'm learning to overcome adversity and learn about what I'm really made of. (Actually, I know a whole lot now about what I'm really made of, thanks to all of my X-Rays, blood tests, MRI's and biopsies!) So here's where I am now: I'm mad. When I first got sick, I was working in my dream job with colleagues who were very dear to me. I loved going to work, and I felt mentally challenged in a way that only my job could fulfill. I had a social connection through my colleagues. I ate a lot of cake for office birthday parties. After I received my diagnosis, I went on medical leave and my work life was never the same again.

This is where my first encounter with the ADA takes place, and yes, I am extremely grateful for the protections it allowed me while I was working towards recovery. I was on leave for about three months and then returned to work part time. I remember sitting in my rheumatologist's office, trying to negotiate with him to allow me to write more hours on my doctor's note. I was trying so hard to get back to my former self. I monitored every change. I kept a spreadsheet of every symptom. Sometimes I would be allowed more hours, and sometimes my hours would need to be cut back. After a while, it became clear to me that I was never going to be the same girl I used to be. My organs are damaged; that's all there is to it. I remember asking my rheumatologist if I would ever be normal again. He replied, "Normal normal? No." It was heartbreaking and inspiring to hear that. I needed to hear that. I think he knew that. All the health magazines in the waiting room had amazing stories about people with chronic illness who were now running marathons or deep sea diving or something. It was great to read about, but it did sort of give me an unrealistic sense of hope. His words meant now I could re-focus my goals. I spent many hours in his office in tears because I didn't want to leave my job or give up the future I had envisioned for myself. I tried for a long time to find the right balance of work and rest. I continued to receive amazing support from my colleagues and eat office birthday cake. But I couldn't do it. Brain fog meant that at times I couldn't remember what month or year it was. Staring at a computer screen or document caused vision problems. Thinking too hard caused extreme fatigue. Eventually I had to resign, and my illness took away another integral part of me.

My rheumatologist also told me once, "I just don't want you to give up." I really, really needed to hear that. I was at the point of giving up on trying to get better when he said that. I felt like too much had been taken away. That was, indeed, a turning point for me when he said that. My friends and family offered encouragement, but they didn't truly understand how hard things were. My rheumatologist, however, did. When he said he didn't want me to give up, it's because he knew what it would take for me to keep going. It meant so much to me, and I thanked him at a later appointment. I can't work anymore, but I am able to spend more time with my beloved family. I can't do so many of the physical activities that I could before, but I am able to... actually, I'm still trying to figure out the positive side of that one.

No, I am not giving up. I still want to sometimes, but I'm not, and this blog is a testament to that. Someone out there reading this might be feeling the same way. If that's you, I just don't want you to give up. I, too, know what it would take for you to keep going. I don't know the specifics, but I know the amount of willpower, as well as the amount of discouragement and/or dread. You might have support from friends and family, or you might be facing it alone. Either way, I just don't want you to give up.

So here I am, trying to celebrate Disability Pride Month. If you have overcome some of the obstacles that disabled life threw at you, then congratulations - I truly am happy for you and proud of you! If you are still struggling to come to terms with it, hey there! I am, too. We'll keep on working at it until we figure it out.

July is also National Bison Month. That doesn't have anything to do with this. I could probably write several more pages about how much I love bison and how symbolic they are in terms of strength and endurance for a person who is constantly weak and tired, but I won't. Instead, I will just wish you a Happy National Bison Month because I really like them. Take from it what you will! And Happy Disability Pride Month! Let's continue to push for greater accessibilty and awareness.

I hope you find something worth celebrating this month! If you already know what you're celebrating, I hope you find a new appreciation for it! Maybe even eat some cake! We're all in this together!