Wake me up at 3am just to tell me that I’m not close enough. Wake me again at 7am because we need to get ready for the day. Once more at 7:15 because we both know I don’t do mornings. Tell me about the dream you had last night while we have toast and orange juice. I’m tired as hell but I hear and feel every single word that you say. Ask me how I slept because you feel like you’ve been talking for too long. My answer is always the same when you ask, sleeping next to you is heavenly. Apologize for waking me up at 3 while I assure you that it’s okay and that I’m so glad that you did, then rally in your stubborn persistence the notion that it was out of line. Start explaining how wrong it was. You won’t get very far into your rant because I need to kiss you. Not only to stop you from being ridiculous but because I love you so much more than I can express with words. So please, wake me up at 3am so I can pull you closer and kiss you softly. “I love you endlessly” will be my sleepy response each time; as those four words are the only ones that can even come close to explaining my feelings for you.
The main thing about EB that sucks is that everything takes forever to heal and everything turns into blisters. For instance, I had shingles this summer. That was super fun. Guess how my body responded to shingles? Blister. Impetigo? Blister. Runny nose? Blister. Splinter? Blister (although this could be seen as a perk, because it often causes the splinter to rise to the surface of the skin). Plastic bandaid on an original blister? New blister. Resting a freaking elbow on a desk or a couch or whatever? Blister.
When you’re walking with people and someone says, “My feet hurt,” what they’re usually saying is that the muscles in their feet have started to ache from exertion. Most of the time, I do not get to that point. When I say my feet hurt, I mean that the tiny little needles of potential blistering are starting to make a commitment to purchasing real estate on my feet. This happens long before cramping would occur in a normal person. If I feel cramping in my feet, I feel accomplished but also very aware that the needles will haunt me tomorrow.
Needless to say, this makes all physical activity difficult, not just walking. Any kind of intense contact with a surface or even just my clothes would irritate the heck out of my skin. Even my skin irritates my skin. I’ve gotten blisters on my fingers from rubbing my hands together after washing or sanitizing them too much. Also, chub rub with EB is the wooooorst.
Another weird thing: I don’t look handicapped. It allows me to pass as an able-bodied person 99% of the time, honestly. But it also means I do not get taken seriously when I am in pain. Once, while I was walking from my handicapped parking space to the entrance of a store with my sister, someone drove by and yelled “You’re not handicapped!” from their car. I daydream a lot about catching up with that person and letting them know that they’re awful and I hate them.
I have it pretty good. I don’t have the most severe form of EB. My life was not in danger as an infant. I’m more prone to infections, and I can’t walk very much. So what? People are dying. People are living with more pain than I could imagine. I can only hope that telling my story will also enable me to shed light on the stories of others who deserve to be heard.
baumanelise: Who’s getting excited for @clexacon in Las Vegas?! I’ll be there March 4th and 5th to meet some of you rad humans. Get your tickets now cause they’re selling like hot cakes….I don’t actually know what a hot cake is, but does anyone really? And in case you were wondering, yes, I did film this in my shower, cause I’m fancy like that. #clexacon
“Hey guys! I’m getting so excited to come to Las Vegas for Clexa Con. I’m going to be there Saturday March 4th and Sunday March 5th. It’s going to be a great time. I’m really excited to come. I hope to see you guys there!”