I hope that you guys aren’t bored of my endless ramblings about living life with Moebius Syndrome and all of the challenges that it brings with it. I really do not want to bore anyone, my intent is to inform and to rant a bit. This blog is my outlet and I must say that I am so glad that I started blogging. It’s a great way to raise awareness while also getting to write as much as I need to about what’s happening. Writing is such a great, calming outlet.
So, onto tonights blog.
My sister made a blood donation appointment for tonight for her, my dad and me. Well it ended up that she was sick today so she couldn’t donate. My dad and I went anyway, as I have always wanted to donate blood. I think it’s an amazing thing to do and everyone should definitely do it. The need for blood is so immense. Anyway, I went through the registration fine, got my donor card, they pricked my finger to check hemoglobin levels and everything was fine. A nurse then took me back to an office to do the screening process to find out if you’re eligible. She asks my name, date of birth and phone number. She then looks at me and goes “so, what do you have that is causing your speech to be different?” or something to that effect. I was a little taken aback, not going to lie. I’m not really used to being asked about it. I explained about the Moebius, and she immediately told me that she didn’t think I’d be giving blood today but she would go through the process just in case. She asked me all the questions, took my blood pressure, pulse, etc. At the end of all this she said I wouldn’t be able to give blood but she would fill out a form to send to my doctor to see if I was eligible. I know that they have very stringent guidelines and i totally understand. Your blood is going to go into another person, possibly someone who is very sick so the blood has to be pristine. But I did not think that a neurological condition had anything to do with blood. LIke, you can’t catch Moebius Syndrome. Anyway, she is writing on the form and writes “difficult to understand her. Speech is..” She asked me how to describe my speech because it is difficult to understand. She then went on to say “Although, it’s not too bad. We are communicating fine. You just have to focus and listen very carefully”. She then decided to go with muffled. Fine, I get it. She wasn’t saying anything that was untrue and certainly she didn’t have to tiptoe around the elephant in the room. But everytime anyone brings it up it is awkward for me and I feel like less of a person somewhat. No one could really know what it is like until you’ve experienced it. This nurse was pretty nice, and it’s not like she said anything that was untrue but I felt judged and looked down on. I don’t know why. I know it was not her intent to make me feel that way at all , nor should I have felt that way but I did. I hate this. Arg.
I went on with my night. I sat with my dad in the refreshment area and ate a cupcake. You have to sit there for at least 15 minutes after giving blood. We then went to Starbucks like everything was fine. I came home and immediately started to blog because I felt the need to.
Dealing with Moebius is hard, and every day is different. Some are really good and some aren’t so great. Tonight wasn’t so great but it’s something we have to deal with. I feel a little down tonight, but I think it’s just my pride that is hurt.
Hopefully there are better days to come, there always are.
Happy Thanksgiving weekend to my fellow Canadians! Please do take a moment to reflect on all that you are thankful for. There is so much!