Stuck in the Middle

I am so sick of being told I am too disabled to be normal and not disabled enough to be handicapped. When I say “being told”, nobody is directly telling me this but there are so many things I find myself getting frustrated about because I am somewhere in the middle.

So my boyfriend and I are moving to the city in September. We are trying to prepare as best we can for the parking situation. When we were on the apartment hunt, our realtor told us that there is a way to get a handicap spot placed near your house. I looked it up and found the application for getting a spot. I read through it and noticed it asked things like “can you walk more than 200 feet, do you have a mobility device, etc.” Things that don’t necessarily apply to me. I wondered if I could really get accepted for this or if it was a waste of my time.

There was a section that was to be filled out by my physician or a licensed specialist. I went to my physician’s office because she is close to my house, even though she has only known me a little while and basically has no idea how FSHD affects me. I wanted to go in so that I could fill it out with her. One of the first things she said to me was, “I’m honestly surprised you were able to get a handicap placard, I got a hip replacement and I have a lot of pain but I couldn’t get one.” I wish, like really wish, that the only thing in life I had to worry about was getting a hip replacement at the age of 50. She felt as though nothing was wrong with me and that my application probably wouldn’t get accepted.

Anyways, it just made me think about how I’m always stuck in the middle. So on one hand I’m not disabled enough to get this handicap parking spot on the road. I think about how hard it is going to be for me to park, even just a block away from the apartment everyday. I often have to carry many things with me, like a big bag for work, my computer, etc. About 5 seconds after I get out of my car with all of this stuff I am already in pain. So now I have to walk a far distance to get into my apartment and I’m tired, I’m in pain, I’m not having fun. By the time I’ll get to my apartment, I’ll just want to lie down and never get up. So I’m not disabled enough to get this handicap spot, yet I’m too disabled to have a normal walk up to my apartment. I just feel so stuck.

You might be thinking, “well why did you move to the city where things aren’t accessible? or why did you choose an apartment with no parking?” I have two answers, dreams and money. I have dreamt of living in an apartment in Boston for a while now. I firmly believe that you shouldn’t let your disability stop you from doing what you love. I’ll say it over and over, I am not going to let my disability stop me from accomplishing my dreams. The second answer is money. We looked at countless places. Half the places were pretty beat up, yet they had parking and half the places were nice but had no parking. I would rather live in a nice place that I feel safe in then live in a gross apartment in a bad area with a view of a gas station.

When people think of handicapped people, they often think of people in wheelchairs. That opinion is changing but it’s still the vast majority of people’s opinion. You look at me and right off the bat you think I’m fine. Yet, you don’t know what I go through everyday. I’m not one to complain to others about my life (except through this blog ;)) but it’s just that it’s really been getting to me lately. I just hate feeling stuck and I don’t know what to do about it; because in reality, there is nothing I can do about it. I just have to be thankful that I am still able to walk, and live in this beautiful apartment in my favorite city.

Growing Up With FSHD – a Short Documentary

Living with FSHD has good times and bad times. It can be difficult to express what it is like during those times, but over the past few years I have been working on a short documentary that finally tells my story. Not only does it just tell my story, it also tells my mom’s, uncle’s and grandfather’s (who passed away a year ago).

Facing this disability alone is next to impossible; but thankfully for me, I don’t have to do that. Even if you are “alone”, you really aren’t! There are so many groups online where people can communicate about their disabilities. Telling others about your disability can really change your life. Getting positive feedback and encouraging words is what keeps me going everyday. You are never alone, you just have to put yourself out there!

Here is the link to my documentary: https://www.youtube.com/watch?v=VSTgoxlMvUw

I hope you can appreciate our story and that it teaches you something new. All I want is to make a difference and inspire others to do the same. Don’t live life wondering what you could do; go out and do it!!

Random Thoughts…

“Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder in which the muscles of the face, shoulder blades and upper arms are among the most affected.” -MDA.org

When I was 13, I found out I had FSHD. To be honest, I don’t remember much about how I reacted when I found out. I had just found out that I didn’t make the field hockey team in 7th grade. I was upset, especially since I realized that I wasn’t running as fast as I used to. My mom told me, in some form or shape, that I had FSHD. She has it too, as well as her brother and father.

The main problem with FSHD is the deterioration of muscle. This causes many visible symptoms, like the inability to run, difficulty with walking up stairs or walking in general, pain in many joints and muscles, the inability to whistle, sip through a straw normally, bend over at the waist. I am unable to hop, skip, bike, lift my arms all the way, I mean the list just goes on.

It’s almost as if I knew it was coming and I just accepted it. I think I didn’t overreact because I could still do almost everything that I used to be able to do. As each year went on, my disability slowly got worse. My muscles were deteriorating and I was hiding it from all of my friends. I was trying not to let this disease affect my everyday life, and it didn’t really, until later in high school.

I’m glad I was able to hide it up until college, because high school and earlier are the prime times for bullying. I’m 23 and out of college and I’ve had people make fun of me very recently. I think if this happened in high school though, I wouldn’t be taking it so well. I find it crazy that people are making fun of me at my age. This has happened to me twice and I know that doesn’t seem like a lot, but I never thought it would happen at all; so it was all very surprising to me.

Before you go and make fun of someone for the way they walk or the shape of their body or the way they talk; think about the challenges they have faced because of it. After working hard to combat your disease, would you want people to make fun of you? It tears down your confidence and it is not ok. Think about that the next time you see a situation like this.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How does this affect me?

Just a few months ago, when everyone was posting on Facebook saying millennials, people of color, the LBGT community, etc. are all in danger if Trump gets elected…I didn’t really believe it. At the time I thought, well what is Trump really going to do? I mean the senate isn’t going to let him pass all of these laws that could endanger people. Today I was in shock when I already saw The House passing an anti-abortion bill. It’s only been a few days since Trump officially became the President of The United States and he is already letting millions of people down. I thought at first this law wouldn’t affect me….but then I thought about it.

By having FSHD there is a 50% chance that my child will also inherit the symptoms of FSHD. You can lessen the percentage though by doing gene therapy, where they take out the gene causing FSHD, DUX-4. But gene therapy is not 100% reliable. After they complete the gene therapy process, I would have to go back to the doctors to see if the process actually worked. If it didn’t work and my unborn child (really a fetus) has the FSHD gene, then I will have to choose whether or not I want to abort the pregnancy.

This is a huge decision for me. Not that I necessarily have to worry about it right now, but I do have to think about it. I know that I do not want my baby living with FSHD. This kind of gene therapy technology was not around when my mother had me, but now that it’s here, I am going to use it. I want to put an END to FSHD in my family. I do not want my child growing up worrying about how different they look, getting made fun of by other people, in pain 24/7, the list goes on. I want their life to be different and I am going to make sure that happens.

How did we let Trump become president? Are there really that many people out there that believed he would be a great fit for our country. Everyone wanted change and that’s exactly what you got. Not good change, but bad. I can’t begin to wonder how many other awful laws are going to be passed. Stay tuned.

SheLift

“I literally can’t even.” – something I’ve heard come out of the mouths of my friends, strangers and girls online. Some people have even used this sentence to stereotype sorority girls. I am one of those sorority girls, and although I have never used that specific sentence before, I have said something similar.

“I can’t” is something I say very often. When my friends are running across the street to avoid the rain and they say, let’s run….I say, “I can’t.” When someone asks me to go hiking on Mt. Washington I say, “I can’t.” Those two words are ones that 10 years ago, I would never use. I used to be able to do anything. I could run miles, hike up steep hills, rock climb, do backflips. I was strong and able to do pretty much anything I set my mind to. Now, I feel limited. Because of my FSH Muscular Dystrophy, I am unable to do most normal things, like run, jump, skip, hike, bend over, bend backwards…the list goes on.

When I first saw Sarah Herron wearing a shirt that said “Maybe you literally can even”, I honestly thought she was making fun of those sorority girls who say “I literally can’t.” I went on for months seeing these bachelor celebs wearing these shirts, but I never really looked into the meaning. Finally, about two weeks ago, I did some research. I was pleasantly surprised when I found out that their mission is to empower women of all ages with disabilities. This is an organization that I knew I couldn’t let pass by. I read all parts of their website and then I bought a shirt.

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It’s so exciting to see a nonprofit company supporting women with disabilities! Not just one disability, but all disabilities. I always think of all the things I wish I could do, like ski again, or hike through the Appalachians, or rock climb, and now an organization is helping young women like me, do these things. To me, having a disability does not mean that you are unable to do things, it just means that you have to work harder than your peers to do the things you want most in life. I used to let my disability define who I was, but now I use it to empower others. I want others to see that you can follow your dreams even though you may be limited physically. Raising awareness about FSHD and disabilities in general is my goal in life. Inspiring others is my passion.

Bravery.

You aren’t always born with a brave attitude, but it can be developed. My disability is complicated. I hate explaining it to people, because the things I say, make it sound like I’ll be useless soon; that my body is fading away. But I am certainly not useless. I’m not one to talk about religion or God, but I almost feel like I was given this disability as an opportunity to make change. This past year has been an amazing journey that really showed me how to change my attitude. This was the year that made me realize, I am meant to be here. I am meant to do something to inspire others. Every time I get an email or a comment from someone who read my blog, it gives me inspiration to write more and do more to spread awareness. People tell me that I’m inspirational and brave and I’ve never heard words like that being said towards me, until I started to talk about FSHD.

I never thought that I would be openly talking about FSHD to complete strangers but here I am, a year later, with so much accomplished in terms of “FSHD”. I was able to get the scapular fusion surgery and educate others on my recovery, the outcomes (positive and negative) and how it works. I posted about my disability on Facebook for 1000 of my “friends” to see (super scary). I’ve posted countless articles to educate those friends about what FSHD really is. I’ve been working on a documentary, for which I’ve released two trailers for all of those friends and strangers around the world to see. My mother, uncle and I went to a biotech company who’s goal is researching FSHD treatments. We told our stories in front of the entire company (THAT was awesome). I saved this next one for last because it was what gave me the courage do most of the other things. This past spring I participated in a public speaking competition. I have never done something like this, so it was already kind of scary. I decided to talk about FSHD and how I am not going to let it defeat me. You should have seen me up there. I could not stop shaking and I was afraid I was going to mess up the whole time. It was the first time I have ever talked about my disability in front of complete strangers. I was scared how people were going to view me. After it was over, quite a few people complimented me on my bravery and that really comforted me. I felt like I had really accomplished something. Ever since then, I haven’t stopped spreading awareness about FSHD.

If you are somebody who also has FSHD, I believe that it is your job to spread awareness. We need to educate people on this rare disease. So many people have never even heard of FSHD, so they don’t know how many people are affected by it. Just because it isn’t necessarily life-ending, doesn’t mean we shouldn’t find a cure. Everyone deserves to live a fulfilling life. Don’t be afraid to tell others about your disability. They won’t look down on you; if anything, they will look up to you.

Post Scapular Fusion Surgery

It’s been 6 months since I got my left scapula surgically tied to my rib cage. In May of 2015 I had my right shoulder surgery and now I am done with both. To be honest, the surgery results are not really what I thought. There are actually a lot more issues than I expected. Since attaching my scapula to my rib cage causes my shoulders to be pulled back, I now have very broad shoulders. The problem with this is that so many shirts do not fit me. If its a tight material that’s not stretchy, it is impossible to get on. This is also due to the fact that I cannot lift either arm above about 150 degrees above my head. This makes it hard to slide something over my head. Another issue I’ve noticed is that when I lean against a hard surface it is very painful. The wires seem to poke into my skin which causes the pain. I am hoping to fix this with a quick surgery though. What’s also weird is that my back has been extremely itchy since December, which is very odd.

Although there are so many downsides to this surgery, I still believe it was worth it. I can now wear shirts that show my back which I’ve never done before. My bra straps actually stay on my shoulders instead of falling down like they used to and it makes life a lot easier.  I also know that in the future, this will be worth it because I will be able to lift my hand to my face (like with drinking or eating) which is something that my grandpa could not do. I know that I did the right thing by getting this surgery done and overall, I am happy with the results.

If you are getting the surgery or want to know more about it, email me: alexipappas19@gmail.com