Monday, September 7, 2015

Paralysis Q & A: Part Two


asked people for specific questions pertaining to my personal experience with a brain and spinal cord injury, and here are the questions I received. 

What is the most positive change in your life since your accident?

I see the world from a different perspective now. I was always so worried about things like money, clothes, gas for my car, how I looked, my body, etc. I'm not saying I never worry about those things anymore, but overall, I have learned that life is so, so precious & that each day is a gift. I realize it in new ways every single day

For example, I watched a documentary the other night called, When I Walk about a man who made documentaries for a living, and when he got diagnosed with multiple sclerosis, he decided to film his experience. The film not only shows how he gets progressively worse (which made me think, because with paralysis, you tend to improve, not get worse-and that must be an absolutely terrifying feeling: knowing you might eventually lose all your independence, yet having no option but to wait), it shook me up and gave me a reality check when his mother, who was an immigrant from India, consistently told him things like, 

"Stop feeling sorry for yourselfyou spoiled first-world childLook at all the people in the world sufferingyou only have one life and you never know when it will endso make the best of it you can and stop your whining."

And, while yes, it would have been easier to die and not deal with all the issues I struggle with-all the physical and mental pain, the daily frustration over the most basic tasks that were once so effortless, my dependence on others & the utter helplessness I feel, I know that there are so many people out there, desperately wishing for one last day. 

Another experience that taught me one of the best lessons I have learned and made me see a little more clearly was from an old psychiatrist of mine. I was whining about how much I missed having control over my life and he looked at me and said, "Who do you know that has control over their life?"

I brought up examples like my mom, sister and friends. I discussed how they are able to choose when they want to go to bed, how they can drive wherever and whenever they want to, how they can jump out of bed in the morning and get ready in just 20 minutes, when it takes me hours, etc 

His reply: "You are talking about independence. No one has control over their lives. No one. You wake up thinking your car will start. You wake up thinking you won't hit a train on the way to work, making you late. You wake up thinking you'll see your kids tomorrow, that your wife won't be diagnosed with Stage 3 Terminal Cancer, that your boyfriend won't hit a semi on some idle Tuesday morning, leaving you paralyzed."

And he was so spot-on. Of course I miss my independence, and it sucks not being able to make certain decisions I never gave a second thought to before, but hearing that allowed me to just.....let go, if that makes sense. 

What do you miss doing the most?

Oh, wow. There are so many things…… But I assume most people would think that I miss things like walking, running, or other activities that relate to the use of my legs. But no. The things I miss are very simple. I miss cleaning. It may sound silly, but it was one of my very favorite things to do before. It was a major stress reliever for me, and now that I can't get up close to a kitchen or bathroom sink, I actually watch my caregivers clean so I can live through them vicariously, as ridiculous as that sounds. I miss the way I used to be able to hop out of bed, take a quick shower, do my make-up in five minutes and be out the door. Because my level of injury affected the use of my hands, the things I miss the most are those that involve finger dexterity, like how quickly I used to be able to type on a computer or a text message, the way I used to be able to simply bend down and pick something up when I dropped it, the way I used to be able to turn over in bed when I was uncomfortable. I miss driving and listening to music in my car. It was one of my very favorite things to do, and I can't wait to learn to drive again. And honestly, it's hard for me to even remember what it feels like to walk. When I think about running, riding a bicycle or climbing upstairs, it's easy to remember that feeling. In fact, whenever I think about those activities, my muscles automatically tense up as if I am actually doing them. I asked my therapist why that is, and he said it's because when you are running, riding a bicycle or walking upstairs, you are actively thinking about it, whereas when you are simply walking, you're not because you have been doing it all your life-it's not something you learned. And I never thought I would say this, but I really miss being checked out by guys. It used to get on my nerves so much and I absolutely hated it. But now, I feel almost invisible, like I am sexless, like I am just a wheelchair. That has been one of the most difficult things to adjust to.

With paralysis how does it affect pregnancy and child birth? Do different levels of injury affect its side effects or possible complications?

There is usually no reason why a woman who is paralyzed and pregnant cannot have a vaginal delivery during childbirth. As I mentioned in my previous post, I know multiple women who have conceived naturally and delivered healthy babies vaginally and via C-section, just like able bodied women.
However, that is not to say there are absolutely no complications. Pregnant woman with a spinal cord injury at T6 or higher have an increased risk of developing autonomic dysreflexia, which I discussed in my Paralysis Q & A: Part One post, (If you missed it, you can check it out here: so it is important to be aware of the symptoms. Some women who do not have feeling below their level of injury may not be able to identify labor pains, so that is an issue they need to discuss with their doctor before hand. Other complications may include: high blood pressure, frequent urinary tract infections and blood clots. And if a woman has a high level of injury (C1-C7), she may be at a greater risk of pregnancy affecting her diaphragm and breathing. But otherwise, most women are fully capable of having a successful and healthy childbirth.

What do you wish people would -and wouldn't- say to you? What would you teach your son/daughter about paralysis?

I had to think about this one for a moment, because I can think of things that I wish people wouldn't say to me, but it's harder for me to think of things I wish people would say. The main thing people say to me that I absolutely  HATE, is when I am having a down day and they'll say things like, "I understand. You have a horrible life." Really?!?! How do you know?! My life could be a thousand times better than yours! I have friends, family, more money than I could ask for, tons of material things, intelligence, wit, literally thousands of people that support me and so many other things that millions of people in this world do not and will not ever have. When I am having a bad day, it's usually not because of my injury-it's typically caused by the same things that would have upset me before, anyway. I look at it like this:



And, for some reason, it really bothers me whenever people call me an "inspiration." I think it's because the word "inspire" implies an action-it is a verb that would mean that my accident has caused the person that told me I was an inspiration to make a change in their life somehow because of my accident. But when I hear it, all I can think they are truly saying is, "I'm so glad that isn't me. Just look at her truckin' along. Thank goodness it didn't happen to me or someone in my family. Bless her heart." And maybe I am totally wrong here. But I can only be honest. I also wish people wouldn't say things like, "you're too pretty to be in a wheelchair" because I think that is like saying I deserve a consolation prize or something for being paralyzed, yet maintaining my looks. Do I appreciate it when people tell me I'm pretty? Of course. But I am much more proud of the work that I do-my writing, my modeling, my determination, my strength, my drive, my intellect, my resilience, my sense of humor, etc. I guess I wish people would just rejoice in my triumphs and be there for me when I am feeling down. It's not so much about what people say to me, it's how they react to the way I deal with the situation. But one thing I definitely DO wish people would stop asking me is, "Can you still have sex?"

If I could tell you what to say to your son or daughter about paralysis, I would tell them that it can be caused by a multitude of factors and that we are people, just like everyone else. That we have the same desires, wishes and feelings as any able-bodied person does. I would also make sure to tell them that just because someone is in a wheelchair, doesn't mean that they are mentally handicapped, because I used to assume that sometimes. I would tell them not to be afraid of us, and that it's okay to be curious and ask questions. Most of us don't mind it. And if the person is rude when your child asks them a question, they were probably a jerk before. :)

Is it terrifying that your limbs don't respond the way they used to? Does it bother you when people stare?

No and yes. I didn't understand or comprehend exactly what had happened to me when I was initially injured because I had a severe brain injury, so it took me several months to realize the severity of my injury. I think I remember it being scary when I was first injured, but I also was able to wiggle my toes (which is usually one of the last movements to come back) within the first two weeks of my accident. I guess I would say it is frustrating more than anything.

The best way to explain how it feels when you can't move a certain muscle, is by the following picture. Try it. You won't succeed.


And as far as people staring at me: I used to be so uncomfortable going out in public. I was absolutely positive that everyone was staring at me and and would almost have a panic attack every time I left the house. Now, I couldn't care less. I have noticed that most people don't even pay attention to me, and if they do, it's just a quick glance and then they move on. The majority of people who stare at me typically tend to be high school girls for some reason. But more often than not, nobody pays any attention. I miiiiight actually be a little bit too comfortable in public now. The following picture is an example of how I embarrass those who choose to spend free time with me.

Nah. There's nothing weird about a girl in a wheelchair, driving around fully covered in a blanket from head to toe in the middle of a hot Arkansas summer, right……?

 I have actually become SO much more outgoing since my accident. Because I had to move to a more remote area and don't know people up here, it is very common for me to strike up a conversation with a stranger and make new friends with them. I am well-known among my friends for going up to random people, getting into an an in-depth conversation with them, and ending up with their phone number.

The following pictures are some examples of the random friends I have made.

On my 30th birthday, I struck up a conversation with this lady in the women's bathroom, and not only did she tell me she thought it was my 22nd birthday, she invited me to come to the restaurant she manages and told me that I can get free pizza there anytime I wanted!

I recently started reading my poetry out loud for the first time in Fayetteville. This is a friend I made there when she read for the very first time. She has recently moved it, but we met up a couple times to write and drink coffee together.

At another poetry reading, I met this man. I don't remember everything he said, but he was quite the character. He talked about sharing a giant pile of cocaine with Jerry Garcia and invited me, my sister and my old neighbor's mom to come over and smoke a joint with him after the reading. People are so kind to me. BUUUT, that's expected; I'm awesome. 

I went to an a capella choir competition in Fayetteville, expecting it to be just like the movie, Pitch Perfect, and look!! It was! I made friends with Anna Kendrick!

The night after the initial a cappella choir competition, they held a "red carpet" event, where all of the winners got to come out and perform again on stage. I was lucky enough to get free tickets to go and the best part? I met the director of the entire program. His name is Deke Sharon, and he did BOTH Pitch Perfect movies, the soundtrack to The Social Network & has won multiple awards.  NPR has credited him as making a cappella "cool again." And what's even cooler is that I found him on Facebook, messaged him, and he responded to me. Paralysis definitely has some perks.

Then, there's the people I meet in everyday life. I'll "walk" I do pretty much anyone in public and get their phone numbers. Here's a few. 

Friend I made at Kohl's. 

My style icon for when I'm older I met at Target. 

"I'm an old woman and I'll wear purple if I please!"

The masseuse I made friends with.

 I was in downtown Bentonville and stopped to ask this group of people here for directions. We ended up talking and I got their phone numbers. Little did I know they were all still in high school. They guessed I was still in college, so naturally, I'm going to marry all of them.


The workers at Sephora, who know me by name. She even gave me eyebrows!


They love me. I mean, duh. Who wouldn't?


I found out there is a club in my area called, The Northwest Arkansas Society of Bearded & Mustachioed Men" and they're, like literally, EVERYWHERE. This is just one. Here are just a few more. 


He was my favorite:)


So cool. 




Everybody gets a kiss!




How did this affect your view of God?

I was raised in a Christian household, with a minister as a Father and always believed, but I in no way tried to lead a Godly life or even really think about God. I had this idea of "Oh, I'm going to Heaven when I die, so it doesn't really matter what I do or how I live my life."  I'm also a thinker and had a big group of guy friends (no girls liked me) who were pretty much all atheists, and pretty much every guy I dated was, too. I questioned my faith, and when friends would challenge me with questions, I would just say that it wasn't something I could logically explain-that it was just faith. I didn't read the Bible, go to church or pray unless I wanted something. 

I could honestly turn this particular question into a whole separate blog post. But I will try to sum it up as succinctly as possible. I can truly say I don't think there's been too many times I've actually been angry at God. It's more like I was sad. Confused. Hurt. I have always heard that God loved me so much more than my earthly father, yet my earthly father would have stopped my accident in a heartbeat. So my main question to God was, why did He allow it to happen? My Aunt Mary told me that the only reason God allows bad things to happen in our lives is to draw us closer to Him. 

I have bargained with God. I have begged God. I have cried out to him over and over again, begging for complete healing.  And that healing has never come. I even got to the point where I no longer believed in God at all. It was the most miserable and darkest time of my life. I could not make sense out of anything and I felt so alone. But God came knocking at the door of my heart, like He always does, and I started to examine my faith. Mind you, I didn't start to believe again right away. It was a long process that is still continuing to this day. But what my accident did was make me look to see who Jesus Christ really is, to truly read the Bible, to know what it means to depend completely on God and not my own understanding. I just can't help but look at the world and know there is a God-intelligent design. I just feel it. This analogy is so cliché, but oh so true. You look at a watch and cannot deny there is intelligent design behind it-that somebody had to create it, right? Think about a computer. It's the same way. Now think about the complexity of the human brain, nature, our emotions, thoughts, etc. There's no way in my mind that any of that happened by chance. I'm still not sure what my purpose here on earth is and I don't know if I will ever find out, but I have to accept the fact that I AM still alive and do the best of my ability to hear God's voice in guiding me to do the good work He has planned for me.  I think the hardest question for me is, what about the people that die? I was so close to dying-they said I literally had two minutes left-so I wonder why me? It's confusing when people say things like, "God kept you here for a purpose" because what about all the people that died? Did God not have a purpose for them? Why did I live? Is there really a plan for everything? Or does God just let things happen as they happen naturally, and then let you choose how you deal with that? I still don't know the answer to that question, and I never will.

How did your family and friends react to the accident? How were they supportive in this case? How did your family and friends react to how you used to be and how you are now? How have you dealt with the situation yourself mentally?

My family and friends were in complete shock, as anyone would be if this happened to someone close to them. I remember my brother telling me that he received tons of phone calls from people I hadn't talked to in years asking him what happened. My mother told me that both of the places that I worked for at the time sent me flowers, put me on leave from work, and expected that I would return soon. Neither I nor anyone else, knew the severity of my injury, except my parents and doctors. I know my parents were in complete shock. I know that they felt like they were living in a dream world. One of my best friends said that my brother and she talked on the phone shortly after it happened and all he could say was, "She's not supposed to make it" over and over again. My sister, who is an attorney, postponed her wedding and took off work for months to take care of me. She was by my side every single day for months. It was very difficult for me to see the people I had known before the accident. I was embarrassed and ashamed. I barely weighed anything, I had no hair, I felt very unattractive and it basically hated myself. I refused visitors and didn't want to talk to anyone. It felt strange being around those who knew me before. There was one person who knew me before that truly helped me, though. I have written about her briefly before. We were looking for someone to take care of me when I first got out of the hospital, so my mom and dad to go back to work. My brother's baby mama was looking for a job and we offered to pay her to come over every day and take care of me. She made me laugh, took my attention off of what was actually happening, and treated me like I was the same person I was before. She would do my make-up and hair every day,  encourage me, and most importantly, made me laugh. If I hadn't had around, I honestly don't know what I would've done without her. The same with my sister. Naturally, my accident and dependence on the care of my family and friends has caused some strain, because it is incredibly difficult to take care of someone like me in and out.

I have gone through multiple stages in the way that I deal with my paralysis. At first, I had made up my mind to be miserable and angry about it. Then after that, my sole focus was on walking. I figured that if I could learn to walk again, I would be happy. Things would be the same again. It would fix everything. Once I learned that walking would not make me happy and that I could still have a fulfilling and meaningful life in a wheelchair, my attitude changed. That's not to say that I am not still trying my damnedest to walk and recover.

Did it affect your future goals? Have your future goals compared to past goals changed since the accident?  Do you look at things differently than you did before (people, surroundings, etc?)

Before my accident, all I really cared about was getting a good job, making enough money to buy a house and travel. I just wanted to marry my boyfriend and live a normal life. I didn't want any kids, either. Today, I definitely do and also, my goals are huge now. I think that I have the opportunity to touch so many lives and do so many more things then I ever would have had the chance to do beforehand. For example, I am now a published poet, I am a model, I am a writer, and I am planning on starting something like the ALS ice bucket challenge to help fund research for spinal cord injuries. I plan on going back to school as well, but I have so many interests that I don't know what I'm going to choose yet. The good thing is, I have much more time to do all of these things. And the most amazing thing is that it doors keep opening for me on their own that I never thought possible. I can't wait to see what the future unfolds. I think I am a much better person than I was before. I am much more kind, forgiving, loving and open.

Yes, I look at people differently. I make sure to tell people how important they are to me and how much I love them every single day, because I realize now how quickly you can lose someone.

 Do you ever have dreams that you are walking or running? Flying? Then wake up and realize the situation at hand...?

I have never, not once, had a dream where I wasn't walking. In fact, neither has any of my friends or family. I think that is because in all of our eyes, we can only remember me as the "old me." The weirdest thing that I constantly dream is that the accident happened, but I am walking and I didn't have to learn how to do it in physical therapy. I will always ask my mom, Isn't it weird that I'm walking and I didn't have to learn how in therapy?"  I never dream I am flying, but I never had that dream before my accident, either. I often have friends that have met me after my accident, who dream that I am walking now. But my most major, reoccurring dream is of waiting tables. I was a waitress for about seven years, and I constantly have a dream where I am at a restaurant and can't keep up. I constantly miss tables, screw up orders and drop things. My dad said he thinks this is because I can't do the things that I used to do, so this is my mind's way of interpreting it. But, I have talked to other people who used to be waiters and waitresses and they have the exact same dream. :)


How has your accident affected your relationships with your family and friends?

I have become so much closer to my siblings. They are my best friends in the entire world. And I am so grateful for that. I also have girl riends for the first time in my life. My sister told me that's probably because I'm not considered a threat anymore, which was a little bit offensive, but she's probably right. And the truth is, I don't really care because it's worth it. The relationship between my mother and I has become more difficult because she has to spend so much time taking care of me. But I try to be considerate of how difficult it is and it's a constant work in progress. 

Do you suffer from chronic pain?  If not, what are some side effects as a result of your accident that people may not realize?

The only chronic pain I have is in my neck and shoulders. But that's probably because I am constantly leaning over and typing on my phone. My phone is my soulmate. :) People may not realize that I have what is called nerve pain and hypersensitivity on the left side of my body. Because I had a right side brain injury, it affects your left side and so all of my sensations on the left side of my body are incredibly intense. In fact, they are so intense that at one time, it was painful to even put my socks on! It is as if there is a line directly drawn down my body cutting it in half from left to right, regarding that hyper-sensation. And nerve pain is like a constant, tingling, burning feeling all over my body. I have gotten used to it, but it was very alarming and unsettling for the first year or so. I don't notice it anymore, unless  I am consciously focusing on it.

How much feeling do you have in your limbs? If you bump a knee or elbow, do you feel it? And are you literally just re-training your body to obey your brain's commands in therapy? Or is it more that you're just strengthening muscles that are weak from not being used? Does your torso have feeling? Is it difficult for you to stay sitting up? Like, do you fall over without support? 

I am very fortunate because I retained complete sensation throughout my entire body. I feel everything. And as for my muscles, yes, I am re-training my body to obey my brain's  commands. The method that they use in therapy is one where they will actually move your muscles for you, where you try to move them at the same time, even if you can't by yourself actively. Then over time, your body learns to make those movements on its own. I was told that you get back 90% of every sensation and muscle movement you will ever get in the first year and 2% in the second year. That is completely false, because every single muscle in my body works now except my fingers. And they are slowly starting to recover themselves. The smaller muscles are the very last to return. Basically, what happens is, when you do the type of exercises that I do in therapy your brain finds alternate passways in new nerves that were damaged to create the ability to move certain muscles that you lost. I can sit up by myself if I am leaning on my arms at the moment. When I was in therapy two years ago, I could sit up by myself totally unsupported. I'm currently working on strengthening my torso to do that again. And yes, I have feeling in my torso, just like I have feeling everywhere else.

Different therapy centers may call it different things, but this is pretty much the agreed upon way to re-wire your spinal cord to regain movement.



Most of the adults I've spoken to in the Spina Bifida community greatly dislike the term "wheelchair bound" because for them a wheelchair gives them independence and is their "legs'- not something that holds them back. Do you feel that way or is it different for those who are paralyzed due to accidents, etc. because you once walked?

Hmmm... That is a really tough question to answer, because honestly, I've never really thought about it.  I guess I don't find it offensive, but I don't particularly like it. Because I am working on becoming NOT dependent on my wheelchair. But no, it's not offensive. 

What is the most important thing you wish you could tell you from before the accident? What do you wish you had known then?

Be thankful. Be thankful for EVERYTHING. Being able to stand up, to take a shower, to put on your make-up without thinking about it, to do all the things that I listed that I miss the most. Don't worry. Most of the things that you worry about never happen, and when something bad does happen, it's usually something that you never would have imagined in your wildest dreams. Tell everyone around you how important they are to you. Every. Single. Day. The last thing that I said to my dad before my accident was, "I love you," when he stopped by my house the Saturday before my wreck. I didn't even remember, but he did. I would tell myself to stop worrying about the way my body looked. I was always so critical of it and constantly compared myself to other girls. Looking back, I can see that I was beautiful. I just didn't know it. I would suggest that all girls think about what their body can do, rather than what it looks like. It's like I see my body as separate from my mind now. Of course I believe in the mind-body connection, but when I look at how hard my body fought to survive and continues to fight, I am so grateful for the work it does. 

How do you work out/stay in shape? Do you worry about body image? How do you deal with that? Or do you even worry about it? I know some people give up...

I obviously work out in therapy. My arms and legs are a lot thinner than they were before my accident, but they are also much more toned. I definitely work out much more now than I did before the accident. And yes, I worry about body image. Once you have suffered a spinal cord injury, your body changes. Your muscles atrophy, and you either lose a bunch of weight or gain a lot. I weigh a lot less and I'm constantly critiquing how thin my legs look and how bloated my stomach looks. But like I said before, I try to focus on what my body can do, not what it looks like.

Check out these guns!

If I saw you in a wheelchair reaching for something or with a wheel stuck on something. Do you appreciate help or do you want to handle your business yourself?

I have absolutely NO problem with someone offering to help me! In fact, I readily accept help! But every person is different. If that person looks approachable, I would suggest that you kindly go up to them and offer your help. I try to do things myself, but I actually think it's incredibly kind when strangers offer to help me. :)

I'm curious to know from your perspective ... What I tell my daughter when she asks why someone is using a wheelchair. 

Like I said earlier, just tell them that we are people, just like everybody else. Explain to them that it can be caused by a multitude of factors and not to be afraid of us. Tell them that it is perfectly all right if they want to ask us a question. I love when children ask me, because I feel like I am teaching them something!

But the best part of all this? I like me now. I'm proud of how hard I work-my goals. My strength. My spirit. And I will never, EVER give up. At anything. 



I had several questions about dating, and I plan on doing an entire post about that after this one. Because I have definitely dated. A LOT. 

My friends say I go through boys faster than Taylor Swift does. Here are a very, very few examples: 
😊
I was sure I was going to marry this guy. So glad I didn't now!

But hey, at least I got some super cute pics out of the deal!
But I absolutely love his daughter. That's what hurts the most-getting close to the children of a guy you date seriously.

And another one……

I'm actually shocked at the amount of guys that are interested in me!

The most recent guy. I absolutely adored his daughter, too. I miss her so much!

But none of these guys left me because of my paralysis.

Look how precious!

And I will probably post the following link in my dating post later, but here are some now:

This is an article I read on PUSHliving.com. I am published on this site and will continue to be published. 

Read this quote first and then read the article: 

"See, guys can be totally chicken when it comes to looking different from their friends. We give each other crap when we do something weird, and….I mean let’s be honest here…dating the chick in a wheelchair is weird.
The only difference for her is that she’s gonna have just as many people like her, but few will be brave enough to say so. Guys are pu**ies…and a**holes. They only like to go out with girls that other people will approve of. Meaning that in a few years, the guy she goes out with is going to already meet a higher standard because he didn’t care she was in a chair.
The chair will eliminate jacka**es, and will hopefully bring to light really solid guys.
But…I mean all couples bear each other’s stuff. Everyone has to deal with sh**. It’s just part of life."
But tell her that if boys don’t ask her out it’s because they’re pansies, and she’s too good to date a wuss."


I was sent a YouTube video called, Wheelchair Dating Questions You're Too Afraid To Ask, and luckily, this girl did such a good job, I don't have to answer myself.


Yours Truly,
MourningGlory xoxo

2 comments:

  1. I've been reading through your blog and I think you're amazing, incredibly brave, and beautiful both inside and out. You are part of what makes the world wonderful and life worth living. I wish only the best and most promising future for you.
    aka lofer1066 (Twitter)

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    Replies
    1. I just now saw this and it made my day because I've really been struggling with motivation lately. THANK YOU for commenting. :)

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