Invisible Disabilities

Invisible Disabilities

My Story
Fran
Fran
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Not All Disabilities are Visible.

I have contemplated and debating publishing my first article. Writing has always been something that has been therapeutic for me. I am a very confident, strong young woman with my whole life ahead of me. However, it is time for me to acknowledge something very personal to me that up until now besides my family and three of my good friends.

There is no manual on how to be a successful person with a disability. The piece about my disability I do typically disclose is that I was born with a condition called congenital hydrocephalus. The way it affects people varies. I am thankful that I am one of the people that can function on a relatively normal level—for that I am eternally grateful.

The biggest obstacle I have had to overcome/learn to adapt to involve spatial relations. What people do tend to notice are my hand tremors—which I also attribute to my mental health battle with anxiety. I also learned how to ride a bike a bit later than those the same age. To this day, I am unable to drive myself independently and at this point, I may or may not ever be able to drive a car independently. Up until now, I have been ashamed and embarrassed that I have been unable to drive independently. I have been ashamed and embarrassed by something I cannot change about myself.

I read an interesting article that I urge you to read—especially if you care about me in any capacity. I want people to understand more about hydrocephalus—there are less than 200,000 cases diagnosed in a year. I have a VP shunt which was first placed the day I was born—however; it wound up getting infected the second day and a new one had to be placed. To this day I have only had two shunt revisions. The second revision was back in 1997 or 1998 when I was two or three years old. The most recent revision was done back in December 2008. I have had this current shunt for less than ten years. Others diagnosed with hydrocephalus can go through many revisions.

I urge you to research about congenital hydrocephalus and hydrocephalus in general. I would also like to invite you to ask me questions about my condition. From this day forward, I am no longer allowing my condition to embarrass me. I am a strong, confident, beautiful twenty-two-year-old young woman who is so much more than a medical condition.

Cover Image Credit: https://www.pinterest.com/pin/428475352032338581/?lp=true

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Yes, I Had A Stroke And I'm Only 20

Sometimes bad things happen to good people.
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Recently, I read an article on Cosmo that was written by a woman that had a stroke at the ripe old age of 23. For those of you who don't know, that really doesn't happen. Young people don't have strokes. Some do, but it's so incredibly uncommon that it rarely crosses most people's minds. Her piece was really moving, and I related a lot -- because I had a stroke at 20.

It started as a simple headache. I didn't think much of it because I get headaches pretty often. At the time, I worked for my parents, and I texted my mom to tell her that I'd be late to work because of the pain. I had never experienced a headache like that, but I figured it still wasn't something to worry about. I went about my normal routine, and it steadily got worse. It got to the point that I literally threw up from the pain. My mom told me to take some Tylenol, but I couldn't get to our kitchen. I figured that since I was already in the bathroom, I would just take a shower and hope that the hot steam would relax my muscles, and get rid of my headache. So I turned the water on in the shower, and I waited for it to get hot.

At this point, I was sweating. I've never been that warm in my life. My head was still killing me. I was sitting on the floor of the bathroom, trying to at least cope with the pain. Finally, I decided that I needed to go to the hospital. I picked up my phone to call 911, but I couldn't see the screen. I couldn't read anything. I laid down on the floor and tried to swipe from the lock screen to the emergency call screen, but I couldn't even manage that. My fine motor skills were completely gone. My fingers wouldn't cooperate, even though I knew what buttons needed to be pressed. Instead of swiping to the emergency call screen, I threw my phone across the room. "Okay," I thought, "Large muscle groups are working. Small ones are not".

I tried getting up. That also wasn't happening. I was so unstable that I couldn't stay standing. I tried turning off the running water of the shower, but couldn't move the faucet. Eventually, I gave up on trying to move anywhere. "At what point do I just give up and lie on the floor until someone finds me?" That was the point. I ended up lying on the floor for two hours until my dad came home and found me.

During that two hours, I couldn't hear. My ears were roaring, not even ringing. I tried to yell, but I couldn't form a sentence. I was simply stuck, and couldn't do anything about it. I still had no idea what was going on.

When the ambulance finally got there, they put me on a stretcher and loaded me into the back. "Are you afraid of needles or anything?" asked one EMT. "Terrified," I responded, and she started an IV without hesitation. To this day, I don't know if that word actually came out of my mouth, but I'm so glad she started the IV. She started pumping pain medicine, but it didn't seem to be doing anything.

We got to the hospital, and the doctors there were going to treat me for a migraine and send me on my merry way. This was obviously not a migraine. When I could finally speak again, they kept asking if I was prone to migraines. "I've never had a migraine in my whole life," I would say. "Do you do any drugs?" they would ask. "No," I repeated over and over. At this point, I was fading in and out of consciousness, probably from the pain or the pain medicine.

At one point, I heard the doctors say that they couldn't handle whatever was wrong with me at our local hospital and that I would need to be flown somewhere. They decided on University of Maryland in Baltimore. My parents asked if I wanted them to wait with me or start driving, so I had them leave.

The helicopter arrived soon after, and I was loaded into it. 45 minutes later, I was in Baltimore. That was the last thing I remember. The next thing I remember was being in the hospital two weeks later. I had a drain in my head, a central port, and an IV. I honestly didn't know what had happened to me.

As it turns out, I was born with a blood vessel malformation called an AVM. Blood vessels and arteries are supposed to pass blood to one another smoothly, and mine simply weren't. I basically had a knot of blood vessels in my brain that had swelled and almost burst. There was fluid in my brain that wouldn't drain, which was why my head still hurt so bad. The doctors couldn't see through the blood and fluid to operate, so they were simply monitoring me at that point.

When they could finally see, they went in to embolize my aneurysm and try to kill the AVM. After a successful procedure, my headache was finally starting to subside. It had gone from a 10 on the pain scale (which I don't remember), to a 6 (which was when I had started to be conscious), and then down to a 2.

I went to rehab after I was discharged from the hospital, I went to rehab. There, I learned simple things like how to walk and balance, and we tested my fine motor skills to make sure that I could still play the flute. Rehab was both physically and emotionally difficult. I was constantly exhausted.

I still have a few lingering issues from the whole ordeal. I have a tremor in one hand, and I'm mostly deaf in one ear. I still get headaches sometimes, but that's just my brain getting used to regular blood flow. I sleep a lot and slur my words as I get tired. While I still have a few deficits, I'm lucky to even be alive.

Cover Image Credit: Neve McClymont

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I No Longer Let My Alopecia Areata Define Who I Am But Let It Add To My Beauty As An Individual

Beauty, growth, and Alopecia Areata

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My name is Brenna, and I have Alopecia Areata. If you aren't familiar with this "disease," the National Alopecia Areata Foundation defines this as "your body's own immune system attacks your healthy hair follicles, causing them to become much smaller and drastically slow down production to the point that hair growth may stop."

I remember combing through my hair one day when I noticed my part seemed larger than usual in one spot. I kept combing through my hair and discovered a bald patch on my head, the size of a quarter. Of course, I began to freak out. I mean, what teenage girl wouldn't? I was fifteen at the time and it could not come at a worse time in my life. I had just begun high school and was trying to fit in with everyone else around me. As if puberty was bad enough, let's just add balding to the mix!

I remember thinking how ugly and unlikable this made me. My own body was rejecting itself; nothing could be worse than that.

I went to the doctor and had various tests done to check my overall health. When everything came back negative, my dermatologist diagnosed me with Alopecia Areata. She reassured me that this would not grow out of control and that it was probably stress induced. I went through many treatments such as monthly corticosteroid shots in my scalp, weekly UV radiation treatment, and a topical steroid I would apply every night before I went to bed.

Although I felt like we were doing everything we possibly could for my hair loss, nothing helped. In fact, my bald spot began to grow larger and larger. I had to get creative with styling my hair in different ways to hide my bald patch. I felt so ugly and insecure.

Then, my hair began to grow back after 4 months of treatment! I was so happy. I felt that I was beautiful and feminine, again. However, two years later during my junior year of high school, I discovered another bald patch on my head. My heart sank as I called my dermatologist to set up an appointment for more treatment. I was frustrated with myself. What was I doing wrong? Why did my body keep attacking itself?

Soon enough, my hair began to grow back and, once again, I began to feel normal. However, I began to look at the cause of my hair growth: stress. Stress is a natural part of life, but I was letting it take over me so much to the point where my body could not physically take it. I realized that I needed to find ways to manage my stress better and live a healthier life.

Today, I still live with my Alopecia Areata. Just a few weeks ago, I developed yet another bald spot on my head. But now, I have a different outlook. I don't freak out anymore when I get a bald spot; instead, I take it as a warning and figure out what is triggering my stress and use my learned strategies to cope with it.

I have learned to live with my Alopecia Areata. I no longer do aggressive treatment, but let it solve itself naturally. I still feel feminine and I still feel beautiful. I no longer let my Alopecia Areata define who I am as a person, but to add to my beauty as an individual. I have learned that true beauty is not about physical aspects but truly from what is within us.

So to the girls who struggle with Alopecia Areata: You are not alone. You are beautiful. And most importantly, you are absolutely perfect in every single way.

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