Touching Hearts

This past Friday I had the opportunity to touch hearts. Well, in all honesty, I want it to be my life's work. I had the privilege of speaking to first year medical students about patients with special needs at the Rehabilitation Institute of Chicago. This was part of my independent study which is all about building my portfolio as a public speaker. Deatra, the faculty advisor for my independent study was there along with my parents. I have such great respect for Deatra, otherwise known as Dr. Sullivan-Morgan. She has a physical disability and I've never had a professor or any authority figure with a disability so the experience has been amazing. Anyway, here is my speech to the first year medical students.

First, I want to thank RIC for making this possible. I think you are such an important group to understand what people with disabilities face. If you are not educated, then who is expected to be? You have a responsibility, in my eyes, because you work with people who expect you to understand. Before I dive in, I’ll tell you about myself. I am a junior at Elmhurst College and I am majoring in communication. My visit here is part of my independent study. As for my disability, I have athetoid cerebral palsy, and three different movement disorders, including dystonia. I’m going to talk about patients with special needs.

Special needs patients go to you, like average patients, essentially, when we’re having a crisis which is when we are pretty vulnerable. I am going to share my most recent trip to the doctor. I had a kidney stone in January and I was in a great deal of pain and I just wanted to feel relief. I was vulnerable because of several reasons. I was in a hospital bed, meaning that I could not use my DynaVox, which is my voice. Due to that fact, my parents were my voice which certainly is not the same as having my augmentative communication device. The second reason I was vulnerable was my family and I didn’t know what to expect. We did not know what worked and what did not. That was really hard for my family and me. The doctors did do their best to tell us what to expect however, looking back they could have had empathy. They could have asked specific questions about my condition even that would have made me feel better. That is why I started with this story; you’re going to be in many situations, not identical, but similar situations. I decided to focus on how you treat a caregiver, our everyday lives, and, the issue of privacy.

Most of the time, caregivers or parents will come to the doctor appointment. If it is a parent there, and the patient is a child or cognitively impaired adult, let them in because they need to know obviously. My parents still come and I don’t mind at all. However, in about five or six years, I may feel comfortable going to a doctor appointment with just a caregiver. Now, that is when you may have to ask the patient, if it’s OK for the caregiver to come in, or not. If not, that should absolutely be respected. What a doctor and a patient talk about is incredibly private. That shouldn’t be different whether the patient is able bodied or not. If the patient wants the caregiver to be in there, I have come up with general guidelines to follow. First, greet the patient before the caregiver. The patient is the one who requires your attention; the caregiver really should come second. I know from experience it is very annoying when doctors only would talk to my mom and dad. Even when it’s a young child, acknowledge them. But, do greet the caregiver after the patient. After you greet them and the appointment is moving along, you may want to ask if the patient had questions before they came to the appointment. If the patient uses a DynaVox or any augment communication system, they will probably have pre programmed questions ready for you. However, you may bring something up that solicits an impromptu question. You’re going to have to wait for the patient to type. We take a long time but we deserve our questions to be answered. Now, in this room, you’re nodding your heads like, of course I’ll wait, but if it’s a busy day and March madness is waiting for you at home, it is going to be so tempting to look to the caregiver and ask, what is he or she typing? Please don’t do that. It’s disrespectful and not respecting the patients independence. They worked hard to know how to use their devices, you’re their doctor, encourage their independence! On the flip side, the caregiver may have questions and that is appropriate. When you answer these questions, make sure when you answer your also looking at the patient. Caregivers or personal attendants do more than just go to the doctor with us.

I am going to talk about the role caregivers play in everyday life. It’s a fact, if Kim, my personal attendant Monday through Friday mornings, doesn’t come; I’m not going to get up out of bed, period. My personal attendants come for bedtime and mealtime. For mealtime, my assistants feed me. I cannot feed myself or give myself a drink. So, I’m incredibly dependent on my assistants. For bedtime, they take me to the bathroom, brush my teeth, apply my face wash, and put on my pajamas. Yes, it’s true, I cannot dress myself. They have to undo my bra, change my underwear, everything that, so called normal people take completely for granted. That is my next point, modesty.

I do not have an inch of modesty in my life. I need help showering, dressing, and anything that is personal care. I remember buying a couple of pair of underwear online. And of course, my assistant and I went to the mail room which is in our student union. My assistant wanted to open it up, like, oh sweetheart what did you get in the mail? I would not let her open it. She obviously understood my absolute panic when she saw what it was back in my dorm room. That is kind of the funny part of my story. The serious part of my story is I had to ask her to help me try them on. And, she of course was very respectful. But I couldn’t help but think, this is not what she woke up wanting to do but in the same breath, I would love to try my own underwear on. Modesty has a lot to do with privacy. I almost have no privacy. Let’s say I get a letter in the mail from my nana, and I want to put it someplace special and private, I can put it someplace private but another person is going to know where it is. This is where I find I have to force perspective on myself. My assistant is not going to go home and tell her boyfriend; Hannah got a letter from her nana today and put it in her jewelry box. No. It is not that interesting. And for my assistants, it is having a real, true respect for me so that we can have that trusting relationship. Now, being doctors, or almost doctors, it’s important to have trusting relationship with your patient. Now, you have probably heard that millions of times. But I’m going to go a little deeper and tell you, how. How to get that trusting relationship with patients. Respect. Being respectful of personal space, for example, if you want to get something out of a woman’s purse, ask first. May I open your purse? I highly advise you start with, may, because she can’t stop you. Of course you can, but get her permission. Same thing goes for men and wallets. If you ask, may I take that out of your purse, it has a completely different feel to it. Respect is everything.

At this point in the presentation, you must be wondering if I think all of this is worth it. The answer day in and day out is, absolutely without a doubt. Yes, it gets tiresome and hard but life is never boring. There is always something going on to thoroughly keep me motivated and laughing. And that is the best part of this life I choose to live. I have an incredible amount of independence. I have learned how to really and truly advocate for myself. I have made mistakes and have quickly learned from them. I get an education. I get the privilege of getting a degree. I think so many of us take going to college for granted and in no way am I saying, I wake up in the morning and just cannot wait to get to class, my first thought usually is, I want to sleep more. However, I do realize that I am incredibly blessed to be physically and cognitively able to attend college classes. And also, I have the opportunity to make friends. I didn’t really have friends before college, and now I have so many thoughtful and incredible friends that I could not imagine my life without. My life, it pretty much fits the definition of impossible and I love it!

Patients with special needs won’t see you every day. You’re our doctor, we want to come to you in our most vulnerable moments and when we want to know how we are doing. In vulnerable moments, we want empathy and understanding, when we’re in your office, we want your patience, and we also want you to understand that we deserve privacy too. I would like to thank RIC again for your time and I would love some questions.

I hope you enjoyed reading that. It was a thrill to present!

Unfortunately, I must end on a negative note which I hate doing in a post. I have received notice that I am on the waiting list for my beloved Camp Courage. I am number 16. I literally feel sick to my stomach at the idea of not going. See, they usually offer three adult sessions and due to financial reasons they only have one adult session. My heart is breaking as I write this. I'm literally on the verge of tears. I need Camp Courage in so many ways. It gives me hope and energy to live in an able bodied world. Readers, I try not to ask for much from you but I would appreciate it if you could say a little prayer or simply keep me in your thoughts. Thank you.

The presentation and Camp have one thing in common and that is the opportunity to touch people. That is all I want to do in this life. Touch hearts...

XOXO,
Hannah!

Sisterhood Reflections

I feel like it was only yesterday that I had my pink argyle sweater on rolling to the Frick Center finding out I had received a bid from Phi Mu. It has made such an impact on me as a woman to be surrounded by women who have the same values and have surprisingly had bad life experiences but go through life with a smile on their faces. Oftentimes, I think Phi Mu gets overlooked throughout the blog because I take it for granted and the truth is I should not take anything for granted.

I remember our recruitment process. It was an interview and two parties. I became emotionally attached to the women as I participated in each event. I felt like this could be home. Well, they felt that way too! On February 13th, 2009, I was offered a bid and of course I accepted the bid. I remember feeling welcomed by my peers for the first time in my entire life.

As a member, I go to the sisterhood retreats, the spring formal, and now, I can honestly say I have girlfriends.

At the sisterhood retreat, you have to understand that the house we stay at is not wheelchair accessible. You would think I do not feel accepted, welcomed, or decide just not to go. No. That is not what happens at all. See, my sister’s help walk me in the house, sit me down on the couch, and help me throughout the night. I do take my assistant with me and I remember one assistant saying, my job sure is easy when your sisters are there. I thought to myself, boy, something is amazing about what she just said. Anyway, I am not in my wheelchair when I am at the retreat. You must be asking how does she participate in the activities. Well, first off everything they can bring to me, they do. I was able to see the little sisters open their gifts from their big sisters, be a part of the candle pass, and I am definitely included in everything. I remember Dana a close friend, made me squeal so loud at the most recent retreat that everybody stopped with what they were doing all thinking to themselves, what the heck is up with Hannah? Then everybody realized Dana had just made me excited and they understand that when I get excited that is how I react. They think it’s cute and the fact that they think part of my disability is cute is a validation that they truly love me for who I am which is the greatest feeling in the world. I feel incredibly accepted and welcomed by my sisters on those special nights. Also, as a proud and active member, I have the privilege of going to the annual spring formal.

I am such a girly girl if you haven’t noticed. Since am a girly girl, put me in an evening gown and I am happy. Put me in an evening gown and with women I love, its pure bliss. The girls wholeheartedly expect me to dance the whole night and I of course do! But I remember at my prom, nobody really wanted to dance with the kid in the wheelchair and it was heartbreaking. I would come home from dances and be satisfied with my experience but something was always missing. The thing that was missing was friends. I didn’t have anyone to enjoy the dances with. Now that I joined Phi Mu that has changed drastically. I have girls who want to take a picture with me and will proudly display it on their Facebook page the next day. These girls also genuinely want to dance with me. They do not dance with the girl in the wheelchair because it looks charitable. They dance with me because they love my spirit on the dance floor. I love these girls because they not only dance with me for the fun of it; they also value me as a girlfriend.

When we have sisterhood nights, I feel so normal which is not a familiar feeling to me. When we have nights of bonding, it usually involves going to the movies, going to dinner, or just renting a room in the Frick Center and making crafts. My sisters talk to me like everyone else; I don’t get talked down to based on my physical appearance. One sister in particular comes to mind when I say sisterhood. That sister is Samantha. She was there from the beginning. Samantha led our chapter for the first semester. Samantha took the time to get to know every girl in the chapter and she did not leave me out. She came to my dorm room frequently, had lunch with me frequently, she gave me someone who I wanted to be like. This was really the first woman in Phi Mu that I truly connected with. Although she moved back to Alabama we still are incredibly close. She actually visited me this summer.

Speaking of moments, I will never forget a moment that occurred at one of the many sisterhood retreats we had. I asked my assistant to stand me up and we happened to be by the banister in the house. Since I have done physical therapy since I was six months old and learned how to stand at a grab bar, my hands naturally grabbed the banister in the house and I was standing pretty much on my own. That was such a proud moment for me. I wanted to capture the moment by taking a photo. I communicated to my assistant to grab a few of my sisters and have them stand with me as I held on to the banister. They were behind me and I was standing with my sisters. One sister did put her hand on my back because I was moving a lot because of how excited I was. I thought to myself, I can celebrate my physical accomplishments with these girls which has not happened before. Usually, it’s my family I celebrate with but that night I celebrated with my sisters.

This past Sunday, we had our meeting like usual but it was pouring down rain and I thought to myself, I don't want to walk in the rain. I have a neighbor who is a Phi Mu and I asked her to walk with me so I could have an umbrella and we ended up having so much fun. The umbrella kept flying out of Jackie's hands and I was laughing so hard. On the way out, a sister caught up with us and I suddenly have two umbrellas over me and it was the greatest feeling in the world.

My Phi Mu sisters have been such a blessing. They don’t have to help me walk into the house where the sisterhood retreat is, they don’t have to bring everything possible to me at the retreats, they don’t have to dance with me at the formals, but they do. That is why I love them with all my heart. The one thing they fail to do is, see me as the girl in the wheelchair. I’m just Hannah to the amazing women of Phi Mu, and I can tell that it is always going to be that way, no matter what.

With this being said, I'm done talking and reflecting about how high school and how bad it was. A dear, dear friend who recently reentered my life made me realize this. This change is not going to happen overnight but this post is reflective of a changed mindset which is focused on sisterhood.

Before I move on, I want to thank each and every sister for being a cause for distraction from the difficult parts of life. Life has simply been better because I have you in it. I love how you are always watching out in some way for me on campus.

Before I end this post, I have two accomplishments I have to share. I did make the Dean's List and my parents were incredibly proud. When I make my parents proud, I know I have done something truly great. Also, I found out that Gamma Sigma Alpha, a national Greek academic society has accepted me. You had to have a 3.75 GPA or get a 4.0 GPA for one of your junior or senior semesters which happened last semester for me. I had both requirements! I don't usually like to put "tangible" accomplishments in my blog however, I want to inspire my readers to as cheesy as it sounds go for the gold and succeed in their own ways.

A True Phi Mu,

Hannah!

Taking Cerebral Palsy to the Hospital

Oh! Dear God! Dear God! It hurt. It hurt. My parents had just dropped me off because it was Sunday and class was Monday .With clammy hands I dialed Mom. It hadn't been two minutes before that we completed our nightly call. I had had a stomachache throughout the day but felt fine in the late afternoon. On the phone, I screamed in pain multiple times. This was pain I had never experienced before and knew something was wrong. My dad finally came and took me home. On the way home, I wanted to go to the hospital but Dad suggested I lie down first. Fine. I get home and my parents put me in the bedroom closest to them. I was vomiting all night. I also asked to go to the hospital but my parents did not take me. You have to understand that because I have Cerebral Palsy and involuntary movements; the ER can be incredibly difficult. My parents did have a point but I was the last person who wanted to validate it at 3 a.m. vomiting. Throughout the night, I would try to find positions to ease the staggering pain but nothing sufficed. It was constant pain and I could not do anything-that's how I knew it could not possibly be the flu. I felt like my right side was going to break because of the never-ending pain.

On Monday morning, my parents had called the doctor. The pain was better but still very much apparent. I went to the doctor and he felt my stomach. It hurt in all the right places for it to be a kidney stone, gallbladder, or appendicitis. I was sent straight to get a CT. Lying still proved to be difficult but manageable. From the CT, we found out I had a kidney stone!

After we found out about my 6 by 4 millimeter kidney stone, we had a decision to make. We could go home and schedule the surgery or be admitted that night, I was all for staying at that hospital. The night before could of been equated to the worst night of my life and I didn't want a repeat. One hour later, I was in a hospital room. My dad had been with me the entire day so Mom came and took over. I should mention that our doctor was brilliant enough to send me to the pediatric floor due to the staff being more open minded and they sure were. I met possibly the best nurse in the entire world. She was very understanding about certain issues that I had. For instance, I have a very difficult time going to the bathroom in the middle of the night so Mom asked that fluids be minimal until the morning. She understood the situation and made it possible. I was all settled by 6:30. I was in the bed, comfortable, and on morphine every hour and 45 minutes. 6:30 on a Monday? I quickly remembered The Bachelor was on. My dad wouldn't even watch it but a girl cannot miss her favorite show. Johanna, my nurse was no stranger to the Bachelor. As she was putting my IV in, she watched it with me. She was great at reading my nonverbal cues which was a blessing! All day I had had no appetite, however when the nurse gave me chocolate ice cream to help with the pill I needed to take, that chocolate ice cream was heaven especially knowing I couldn't have anything after midnight.

On Tuesday morning, I woke up to Johanna introducing me to my next nurse who paled in comparison. The doctor came in and told me what would happen during surgery. When the physician’s assistant came in and said, we're ready, etc. I got a little scared. This is when I thought, do they know about CP? Movement disorders? All those thoughts went into my head like a bed of nails. I did start to cry a little but at the same time, I wanted this thing out of me!

I could barely keep my eyes open after surgery. Between the drugs and lack of sleep, opening my eyes was a feat. They had put a stent in so everything would move correctly. When I went home, the stent was incredibly painful which they had neglected to tell us so I basically was bed ridden. I was on incredibly strong pain killers which made me exhausted. I didn't have my sense of humor; I would say Hannah disappeared for a week!

After a week had gone by, I had a mini surgery where they removed the stent. After 7 days, I finally felt normal. I cried with joy. Feeling normal had never felt so good. Reflecting back, I agree with my parents decision not to take me to the ER. It would have been more difficult than what we ultimately did. Bringing Cerebral Palsy to the hospital was hard enough, we didn’t have to make it more difficult!

It was the next Monday. My stent was out and I felt normal. I found myself in my dormitory lounge watching The Bachelor; my only concern was that it had a tremendous amount of homework. It was my normal routine and I had a new appreciation for it. I’m incredibly blessed to not have ongoing medical issues. I was in the right place this Monday!

Before I wrap up, I do have joyous news. Just today, my godson was born. His name is William James Endres. It is my cousin, Lauren and her husband Scott's son. I know everybody says they will make great parents but it is the epitome of truth for this couple. I couldn't be more thrilled and our family is simply ecstatic!

As for me, I start spring semester tomorrow. This semester will include my independent study and a lot of adventures, of course!

All My Love,

Hannah

The 12 Gifts of Christmas

I have already opened so many Christmas gifts. I have been so blessed this holiday season. I've decided to do my own version on the 12 Days of Christmas. This idea was inspired by a sermon I heard at the beginning of December.

The Twelve Gifts of Christmas

My first gift was the fact that Mom, Dad, and my former physical therapist, Jodi all came to Lessons and Carols which is a Christmas service I read at. Seeing Jodi brought me to tears. Whenever I see someone from my past at Elmhurst College that helped me get to where I am now, it is a surreal feeling because they helped me live my dream. I can't even think of words to describe that feeling.

My second gift was that the school choir did a Christmas concert. I absolutely love Christmas music and something as simple as hearing my favorite Christmas tunes lives is a gift.

My third gift was picking out gifts for my friends and assistants. Part of the joy of this marvelous season is the satisfaction that comes with finding that perfect gift for someone. I know Christmas is not about the gifts however, giving gifts elates me.

My fourth gift is that I have worked extremely hard this semester in my academics and I am finding it is truly paying off. Since a significant part of my identity is being a student, it is such a great feeling.

My fifth gift was that a certain professor and I really bonded over the semester and she actually was the one who approved the independent study for next semester. And it was really funny because after our last class together she rushed off and I was a little confused because she had left without saying good-bye. The next morning I received an e-mail from her explaining that she had been late to a meeting and was looking forward to working with me next semester.

My sixth gift is actually quite the story. I decided to go to a fraternity's Christmas function. I was all ready and dolled up and looking forward to a great night. My assistant Jessie and I head out to the buses and the fraternity had not ordered buses with lifts. I felt my heart sink to my feet; I knew it was not good. When the fraternity men saw me, it took about two seconds to realize that we had a huge problem. They immediately called the bus company. They couldn't help us. They tried getting the Elmhurst College shuttles. The accessible shuttle doesn't work on weekends. They tried local taxis. Nothing. I did not end up going. However, the humanity displayed that night was a true gift.

My seventh gift would be having the privilege of helping a friend. My friend Danielle from Camp Courage recently lost her boyfriend. My heart has been with her through the six weeks that he was in hospice. It was emotionally draining to see a dear friend in so much pain but she is being so strong. It's unbelievable. As for her boyfriend, Cullen, I can tell you with great confidence that the world has lost an angel. So many people help me, it was nice to be the one helping not receiving.

My eighth gift is the fact that I have been able to grow so much in my faith. It really helps on difficult days to have that strong faith. I will admit, it's the end of a difficult semester and I am exhausted and my faith is incredibly helpful.

My ninth gift is that my technology has been working. KNOCK ON WOOD. Yes, everything has been working except for a few small things.

My tenth gift is that my dear friends who visited me this summer, Nicole and Joe, from Camp Courage GOT ENGAGED! I am beyond thrilled for them. They will make such a wonderful married couple and eventually family.

My eleventh gift is receiving a new title. My cousin Lauren and her husband Scott have asked me to be the baby's godmother. This is not only an honor and a privilege but a gift! I take this role extremely seriously and I cannot wait to hold my Godson.

My twelfth gift would definitely be everyone who is reading this blog. I don't think you can understand how much you keep me going. I am constantly thinking about the best way to act, how to handle a crisis, how to be a good friend, and how to be the best person I can be because I know so many people consider me to be a roll model which is a incredible compliment. For that, dear readers, I am eternally grateful. I did not expect my blog to be what it is. I really didn't. I am so thankful that it turned out to be what it is. When something completely exceeds your highest expectations, it is a true gift that Webster's dictionary does not have words for. I hope I have inspired, moved, and somehow touched your lives. I do not write for myself, I write for others.

Have a Blessed Holiday Season!

Merry Christmas and I will write to you in 2011,
Hannah!

P.S. For all the Christmas party guests, I am so excited