All my life, my parents have reminded me to get up and stand. At 24, I take it upon myself to take care of myself and get to standing every couple of hours. So, it's a Sunday afternoon and Theresa is coming in two hours. It's an ideal time to go to standing in my wheelchair. I decide to put on some music and standing. I can't think of anything more boring or how much I don't want to but I know I should. I start pushing the button to stand and it stops. The wheelchair is dead.
I didn't mention that Mom and Dad are in Bora Bora. They are 24 hours away! Dad just can't come and switch me to my backup wheelchair. Thankfully, Tiffany understands as my main caregiver, she becomes the point person. I'm in the squatting position and my joystick is dead. Getting to my phone is fairly difficult. When I call Tiffany, I'm cursing my music! I have to turn the DynaVox up so she can hear me. Tiffany finally understands the position I'm in and says that she will call the other girls. This is a relief! Tiffany can't come because she's an hour away, Caitlin, my new roommate is also an hour away, Tiffany called Theresa who was about to come in a few hours. Thankfully, Theresa is 20 minutes away. So, now that I have someone coming, I think about what the heck to do. I have the personal cell number of my main wheelchair guy, along with two other repair men. Also, Jessi, my lifelong friend who also has Cerebral Palsy has a phenomenal mother who could problem solve, and at the "front lines", David, my brother, and my uncle are ready to help. After I think about my support system, I feel better. Theresa comes and I said, we will call this wheelchair guy first and then if he doesn't answer, we go to friends and family. God bless that wheelchair guy because he picked up on a Sunday night and walked Theresa through figuring out what was wrong. I was mobile and happy!
As if that event wasn't enough, two days later, the fire alarm went off in my building in the afternoon. I was by myself but I was in my wheelchair. I literally went on auto pilot. I was working at my desk so I pressed my emergency button and got out! I felt the door (yes, I remembered my fire safety) and got out of my apartment. Once I got out, I realized I hadn't ever been told what to do once the emergency button was pressed. Naturally, I looked for neighbors. I met some in the hallway. They suggested the elevators and I hesitated because I was always told NOT to use the elevator during a fire. If you think about it, an elevator is a box in a building that is sealed shut. It is not safe in a fire. However, it had been five minutes and the elevators were still on so I figured it was not really a fire. I got down safely and got the firefighters attention and he explained the maintenance guys had triggered it. I was upset with how the firefighters handled it because you would think that they would make an effort with a younger woman in a wheelchair. One of them should have sought me out and explained what was going on.
My final story is a doozie! I was sitting on the couch with Tiffany a week later, and we were expecting a wheelchair part to be delivered that day. So, when Tiffany heard my phone ring and it was UPS. She runs down and when she gets back, she is locked out. I am on the couch with Tiffany’s phone unable to open the door. All I can do is laugh. This is the cherry on top! After two minutes, I finally realized how serious this situation was. So, Tiffany is screaming through the door for me to crawl to get to my wheelchair and push the button to open the door. I awkwardly get to the kneeling position and realize the ottoman moves. Oh, I’m in over my head! My movement disorders make my knees move on the carpet and I am hurt. I get myself lying down on the floor and see two open wounds on my knees. I’m down for the count and close to tears. My knees hurt like hell. Tiffany asks if I am OK. No. Did you hurt your head? No. I can hear Tiffany’s heart beat slow down when she knows my head is OK. Tiffany is knocking on people’s doors. Finally, a neighbor lets her use the phone and they get the landlord. The landlord is actually on his way. Thank God! Ten minutes later, Tiffany busts in and is at my side. “Ouch”, I said on the verge of tears. “I’m so sorry” Tiffany exclaimed! “I know sweetie, you didn’t mean to” I silently say to her. Now, the question is, can I still wear that dress Mom bought me to David’s graduation party?
Life is going to happen whether we want it to or not. My mishaps didn’t end when I went to London and Paris. It was a phenomenal trip but not all of it was smooth. Stay tuned! It’s good, I promise!
Till next month,
P.S. To all my friends in Minnesota, I am coming next week! If you want to get together, e-mail, message, or tweet to me, you know how to get a hold of me!