Heels and Wheels

"Bathroom and snack first" I think to myself. After that, I'll lay on the bed and get dressed so I have time out of my chair. It's going to be a long night for sitting...need some make up to complete my look...take my medicine...can't wait to see my friend on stage...those were my thoughts as I got ready to see my friend play at a bar in downtown Chicago. Let me explain. 

I have to have a snack because I may gag if I get too hungry. Nobody wants to do that in public. I've found that the Special K meal replacement bars give me the most freedom and I can stop thinking about the terrifying possibility of gagging at a bar. If you think it's easy for me to go to the restroom in public, think again. It's incredibly difficult because I need and want things a certain way and public restrooms fail to be Hannah friendly. I use the bathroom right before we leave because of this issue. I realize using the bathroom and having a snack are also what kindergartners do so it isn't my favorite part of a night out.

Mom and Dad's voices echo in my ear; "don't sit for too long". I do understand how important it is however, finding the time to get up is one of the most difficult tasks I face during a day. This is because I can't function in the standing position. I can't type, I can't use my DynaVox, you can see how unappealing this task is. However, loopholes such as getting dressed in bed can be life savers and give my body a break. There is one thing I can never do while laying down which is put on my heels for the night. My assistant will throw my gym shoes on and help me to my wheelchair. Ahhh...the struggle of heels! My assistant has the challenge of zippering my black leather boots over a seemingly small bump in my orthotic. They can see how much I want it so they roll up their sleeves and get them done. I shot them a look of true gratitude. Now, it's on to makeup and hair. We must do makeup first because I need my headrest so we can successfully apply the makeup to my face. After makeup, we can take the headrest off and do my hair. Let me be perfectly clear. Unless I ask for their opinion, I make every decision about my wardrobe, makeup, and hair. My assistants have referred to me as their opinionated Barbie. This is very true. 

We have to go! I usually type the address into my DynaVox so we can simply type it in my navigation system and go. I usually time things just right so we get there on time. My friend was singing at 8:00 and I would be there to cheer her on. I consulted with my good friend, Google on how heavy traffic would be. I was safe leaving at 6:45 for an 8:00 show. There was one thing I didn't plan on which was parking in the city. I will make a very long story short. Tiffany, my assistant ended up driving for 90 minutes to find parking. I felt horrendous about the entire thing. Meanwhile, I had to educate the bar staff on women with disabilities. We both had difficult jobs. Even though I physically had my wallet, I didn't really have it. I was not going to trust the staff with my wallet. That was just stupid. My friend came over to me overflowing with excitement and was just a bundle of energy. We took a picture then she noticed I was not with anybody. I assured her I was fine which I was; I just needed to get in. What do I do? I had everything to get in just nobody to get it out of my purse for me. I don't know why but a waiter let me in to the stage area. It was much too loud so I silently promised the man to pay later. 

I did get to see the wonderfully talented Gina Venier light up the stage. Gina rocked out and I thought about my mom and dad at this age. They went to see my Uncle Tim play at bars like these all the time when they were my age. This man isn't actually related to us but he is family. I thought about how lucky I was to do the things that my parents did at my age despite having a disability. Poor Tiffany finally came after Gina's whole set was over. I just felt terrible. Like always, she was a good sport. We proceeded to pay and have our IDs checked. The staff gave me a grateful look as if to say thanks for not taking advantage of us or your situation. I would never. 

I bought Tiffany a Diet Coke and we went back in to hear more local singers. I held my shoulders high showcasing a sequin top, skinny black jeans, and black leather boots. I got a few hellos from cute guys. The night was a complete success and I could tell because my feet were killing me by the end of the night...always a tall tale sign of a fun night! 

It's a good effort on my part to go out but it's always worth it. If you ever think you shouldn't invite someone with a disability out because it's extra effort for them, don't forget that you always want to be invited. Nobody wants to feel unwanted. My girlfriends have stepped up. Now, it's time for a guy to step up and embrace a woman with heels and wheels! 

A Little Girl's Love of Christmas

There once was a little girl who loved Christmas and everything about it. She loved sitting on Santa's lap, she loved her Christmas dresses, she loved eating Christmas cookies her Nana would sneak her, but she especially loved her mother's Christmas party. It seemed like everyone she loved came on one night to be merry and celebrate. The little girl always felt a warm glow inside of her as she looked at her mother's decorations and everyone with smiles on their faces. At the first few parties, she would be on everybody's hip and then to bed. As the little girl grew up, she would show off her pink wheelchair to all the guests. Later, she would tell them about school and how much she loved it. A few years later, the girl went off to college and would come home just in time for the Christmas party. The spirit of the party never changed and the little girl loved that it never changed. One year, the little girl who was not so little anymore found herself in an apartment and of course thought to herself, "Why not have my own Christmas party"? It was a splendid idea indeed! She wrote to all her friends of this party. They loved this idea! She went out and bought party decorations in the theme of red and white snowmen. She got food and drink that she knew her guests would love because of all the years watching her mother. The day finally arrived and she was so excited! She had eleven guests at her party and they all were filled with Christmas cheer. The party had gone tremendously. The little girl realized that the greatest gift her mother gave her throughout her life was the party because it gave the girl her first Christmas tradition.

As you have probably guessed, the little girl is me. I love my mother's Christmas party and always knew that I would have one in my first apartment. It was really wonderful and definitely will happen every year.
In addition to the Christmas party, I did send out over 100 Christmas cards. I'm not joking. Between my friends from the summer retreat, my Camp Courage friends, family, people like family, and neighbors, it totaled roughly 120. It was a huge undertaking but I loved it! Of course, decorating my apartment was also fun.

Now that Christmas is over, I am bummed and a bit crabby (sorry, Mom and Dad). I just HATE when the merriment is over. I am going to Minnesota tomorrow so I can't be that bummed out. I get to see my godson, cousins, Nana, my aunt and uncle, and actually some friends from Camp so I feel incredibly blessed.

I hope you had a wonderful Chanukah, Christmas, or Kwanzaa. I have learned this Christmas that I may be a woman but I will always have a little girl's love of Christmas.  

I wish you nothing but joy in the New Year!

Love and Merriment,
Hannah! 

Crashing Through Doors

Remember when it was 95 degrees outside and you couldn't stop sweating? I sure do because I was at Catholics on Call. It was a retreat over the summer and it focused on discerning your vocation and how God calls us to participate in certain vocations. It was a very holy and significant experience for me. The organization has a monthly newsletter and I was asked to write a reflection of my time at the retreat. I was honored and happy to do it. Now, I realize my readers vary in their religious beliefs. As always, I respect your beliefs and want everyone to get what they can out of my writing. My blog is about others having the ability to walk in my shoes for a moment. 

My life changed nearly six months ago. It started when I was in a room with strangers on a Wednesday afternoon. The room was anything but cold though. The strangers were all incredibly friendly and welcoming.  Despite my outward appearance, they welcomed me with open arms. I was at Catholics on Call.

After we had slightly broken the ice, we prayed together. It was such a vibrant experience. This was not like Church back at home where everyone and everything was quiet. The songs were made to lift your heart and make your spirit joyful. Everyone sang and was enthused by our time to worship. It was so powerful that it brought me to tears at times. For the first time, I sang as best I could with my fellow believers.

When we would have meals together, everyone was welcome at any table. I was forming friendships with many people of all different backgrounds. Some had southern accents, some had different beliefs, and the list goes on and on. However, it was our Catholic faith that acted as an invisible thread and wove us together as a community.

When I enter communities, I enter with cautious optimism. See, I am not your typical woman. I have a severe form of Cerebral Palsy. I cannot walk or talk. I use a power wheelchair and a computer to talk. I had to bring an assistant to feed, dress, and help me with other personal care tasks. Everyone could see that it took a significant amount of effort just to come to the retreat. I expressed a desire to read the liturgy on the second day of the retreat. After that any hesitation about what I was about was answered. I am not angry at God for the fact that I have a disability. He and I work together to overcome my unique obstacles. He always cracks the door to an opportunity and my job is to not only open it but crash through the door. Whether it was graduating college or standing independently for five seconds in physical therapy, God was at my side giving me strength and courage to complete the task.

At Catholics on Call, everyone quickly got comfortable with being around me and even helping me. The most meaningful experience was when I decided to drink the blood of Christ for the first time. I had never felt comfortable asking because it always had seemed frivolous to ask. However, these strangers had now become good and understanding friends. They were patient enough to let me enjoy this sacrament. Sister Mary Catherine held my straw in place, a friend held the cup, and another friend was ready with a napkin. I did not need my assistant which was significant for me. Whenever I don’t need an assistant, it feels exhilarating! I know God has provided that moment to rejuvenate me.

Other than little moments of joy and independence, Catholics on Call provided me with incredible clarity. I know He wants ministry woven into my career path. Currently, I am working on getting insight into a campus chaplain’s life. I love critical discussions about the Bible and want to touch young people as they enter adulthood. Secondly, I am looking for Christian magazines to write for due to writing being my way to not only make the world around me think but writing is also a way of getting my message of hope and determination to people.

I am sure God will open many doors to my vocation(s). I will follow Him and trust His guidance. Trusting God can be difficult for a variety of reasons however, thinking back to Catholics on Call will remind me to trust God. Catholics on Call was a wonderful week of my life and I will never forget those five precious days of faith, prayer, and friendship. 

I hope you enjoyed my reflection. I am quite busy decorating my first apartment for Christmas! It has actually turned into an obsession. I have a small Christmas tree and decorations all over the place! Following in my mother's footsteps, I am having a Christmas party with all my friends! Of course, I am already looking forward to my Mom's Christmas party! I can't wait to see everyone. This year is a milestone because I will have an assistant take me to the party then bring me back. Usually, I have to interrupt them asking for help and they have to worry about putting me to bed. It will really make me feel independent! 

Be Merry,

Hannah! 

Pain

Pain is one of the hardest things in life. It is human nature to avoid pain at all costs. However, physical and emotional pain is inevitable. Most of you know I have been in pain for the entire month. I've been to the emergency room twice. That was fun. I've been using Facebook to keep people up to date. In the end, it was an ovarian cyst. I am happy to say that I am 100% myself again. It was rough to say the least but I am thankful to be able to say the month ended on a high note. 

Last year I wrote about Julie, one of my dear friends that survived a double lung transplant. On October 24th, we celebrated her one year anniversary of her life saving procedure by coming together and saying the rosary. I asked Julie if I could say a few words that night. I needed to speak to get closure. 

How did I get here? How did we all get here? Here we are saying the rosary on the anniversary of what really is a miracle? I will go back to when I first met Julie.

I first met Julie in my residence hall when I was a senior in college. I could see we both had medical issues. I simply said, “If you need help, just knock on my door”. Not twenty four hours later, she did need help. She was homesick, having trouble finding her niche, and having typical freshmen problems. I was more than happy to help this beautiful young lady. We were becoming closer and closer. She quickly became one of my best friends. We would talk a lot. One fateful day she said, “I cannot hang out with you because I am going to a wedding”. I never thought I would get chills all over talking about that ominous conversation. I get chills because that conversation was our last conversation in the dorm.

The next form of contact I had with Julie was through text message. She texted, “I’m in the hospital”. I thought to myself, “What do you mean you’re in the hospital”? This was crazy. She was fine three days ago. Remember, I met Julie when she was on oxygen. I thought that was normal. I was wrong; dead wrong. I was raised to follow the golden rule. So, I visited Julie at Lutheran General. When I think back, that was me saying, I am never leaving your side.

Now, the storm just got worse. Julie spiraled down and I was not allowed to see my best friend because she was in the intensive care unit. I do not get scared easily, but that shook me to my core. It is not easy to give someone your heart and have it teeter-totter between heaven and earth. I remember posting a comment on her brother’s Facebook wall, what is wrong with Julie? His reply: she needs new lungs. My body turned into an ice cube. I could not even think of the severity, my mind refused to go there. I prayed, we all prayed, I asked God to save my best friend. We prayed for our daughter, our sister, our niece, our neighbor, our sorority sister, we all asked God for Julie.

We got her back a year ago today. Julie’s family was kind enough to let me visit her when she moved out of intensive care. They understood that I was not taking “no” for an answer. When I was walking down the hall at Loyola, I didn’t know what to expect. Low and behold, I saw Julie in her bright pink robe. “Hey gorgeous” I said. I was comfortable around the hospital equipment; I have been around that type of environment all my life because of therapy. I couldn’t help but notice that Julie’s family did not mind my company. I think they sensed how much I adored their Julie. I began to get to know each of them on a personal level and they certainly did not mind my disability.

I was beginning to realize that although it was a terrible situation, God was there. God gave me the strength to reach out to her and say, I’m here if you need me. God gave me the strength to get through those weeks when I couldn’t see her. God gave me the strength to see her after the surgery. God gave us the strength to see Julie through this.

Before I end, I want to explain why I chose to speak tonight. The truth is each and every one of you has a story. We all remember the desperation we experienced, the fear we had, and the joy of Julie getting new lungs. Each of you has a Julie story. That is what we highlight tonight. This chapter of Julie’s life is over and hopefully never to be opened again. I always identified as the friend who came as things got really bad. For her sake, I need to just be Hannah, her friend. It took a few conversations for me to realize that I have to have a new identity with her. I am here to cheer my best friend on during her college years. That is all. So, after tonight I promise Julie, I will just be your friend. However, I will end this with a story.

Julie finally came to visit campus in May.  I had visited her many times at her house since she returned from the hospital. But, there was something holy about seeing her on campus. As we hugged, I looked up to heaven; I mouthed the word thank you. Now, I want to say it loud and proud. Thank you God, for my best friend.

Pain is inevitable. We can’t hide from it, can’t pretend it does not exist, nor ignore the potential of pain throughout life.  We may scream and cry because of it but the pain will go away or lessen with time.

I really needed support this month. I received an enormous amount of support from you all. I am guessing but I think it is safe to say 50 people or more commented on my Facebook statuses. An easy 150 people must have “Liked” my statuses. Your good thoughts and abundant prayers were so incredibly helpful. When I was in pain, I would read what YOU wrote and it would immediately lift my spirits. It was literally overwhelming at times. For example, friends sent cards, a Sunday school class at my church sent about a dozen cards to me, so many e-mails, and it was truly amazing. So, from the bottom of my heart…thank you.

Also, my parents were so loving. The hospital tests are brutal when you have involuntary movements and they helped the doctors understand what would make it easier. Mom stayed with me overnight in the hospital, that was a rough night and we made it bearable. Dad got me through some awful moments during tests when if it was during his shifts. My parents are smart enough to take 3-4 hour shifts with me if I am at the ER to avoid complete exhaustion.

Thank you for the abundant love this month.

Humbly Yours,

Hannah!

Help! I Need Somebody...Not Just Anybody...

My assistants are a crucial part of my life. I love them dearly but there comes a time to say good-bye. Good-byes can go one of two ways. They can involve a dinner and gifts or an awkward conversation with my mother. I had one of each this month. The woman who got the awkward phone conversation with my mother was controlling and manipulative. It was a very unhealthy relationship. Then, there are amazing women like Aislin who will literally sacrifice a week of their life so I don't have to be around assistants I don't like. I am eternally grateful for her sacrifice that week. Now, I think people who do not have disabilities think new assistants grow from trees. They don't.

I am going to explain the interview process. This is the way my parents and I choose to do it. Other members of the disabled community choose to do it differently. Everyone has their own way and I respect all ways. My family and I start by putting an ad on Craigslist, and then my mom e-mails the prospective candidates who seem serious about the job. After a few e-mails with each woman, my mom gives me their e-mail address. We decide where and when to meet. Since I don’t have the luxury of having access to a student union anymore for a public place to meet, I usually choose Starbucks.

Over the years, I've had some strange conversations in these interviews. I've had a pretty difficult month with assistants but I really don't feel like focusing on that. Instead, I will share some of the conversations that happened during these interviews.

Interview #1: Ms. Moocher. I once had a girl who thought "doing dinner" meant I would buy her dinner. No, it does not. It means feeding me dinner. The girl looked confused. After that, I quickly ended that interview.

Interview #2: Ms. Drama Mama. This girl is a single mom that tugs at my heart strings. She wants to get back and help the world. I am considering hiring her until she brings up how her baby daddy died, how her grandmother is sick, and how her son replaces a father’s love with TV. That is drama. I can't handle people with drama. I get emotionally attached to these girls and if they get upset, I can’t help but get upset. Hiring this girl would end in disaster.

Interview #3: Ms. Resume. Everything looks great on paper. She can have a great e-mail exchange with me, my mom, and we have all this hope. The thing is Ms. Resume and I have absolutely no chemistry. She just cannot have a decent conversation with me. Part of this relationship is compatibility; if I have to ask all the questions and she feeds me the perfect answers then it won't work...at all!

Interview #4: Ms. Shy. I can tell if I have a "Ms. Shy" within 30 seconds. She will introduce herself and then wait for me to completely carry the conversation. The hard fact is that my assistants need to advocate for me at times. For example, a lot of salespeople don't understand the DynaVox. I count on my assistant to explain to them how I communicate. If she can't hold a conversation with me, this is not going anywhere.

Interview #5: Ms. Volunteer: She has worked with people who have autism, Multiple Sclerosis, the elderly, and now, she wants Cerebral Palsy on her do gooder list. I'm not opposed to this girl, I understand it's all about the resume these days but if you see me as an act of charity...good-bye!

Interview #6: Hannah's New Assistant. She is funny, cute, empathetic, grasps the job’s tasks, and the time flies! Usually, I give each girl 30 minutes even if she is Ms. Shy. You have to understand that I go into every interview hoping to love her. I know this is the case if our interview turns into a conversation and I don't notice the time. I can't tell if she is my new assistant by first glance. Ask anyone! All my assistants look very different. At the end of this interview, I oftentimes give the job away. I'm happy, she's happy, it's all good! Success!

I have struggled with getting assistants and I will admit that interviews are exhausting with how much I have to talk and now that I have to be driven somewhere, it’s even harder  However, in the end I have a new person in my life...what a great gift!

Hiring a new assistant is difficult under any circumstance. However, when I do find a new person, it is exciting. There is a learning curve involved on both ends. I have to adjust to their personality and they have to learn my routine. It’s all worth it because I am living my dream of being an independent woman at the end of the day.

Huge shout out to my mother for sorting through the e-mails of women who reply to the Craigslist ad! Oh, and then she comes out and trains them. That is a mother’s love!

I want to thank Aislin for three years of helping me be independent! Good luck at your new job.

Let this post attest to The Beatles song “Help”. The lyrics have been the soundtrack to my month.

All my Love,

Hannah!