Monday, April 30, 2012


Listen to my podcast on the BeautyAbility blog! Tiffany interviews me about my life and how I'm dealing with my disability. Click on the link below and then click play…


Sunday, April 29, 2012

Phone Calls and Speaking

The other day I was making a doctor's appointment. This is how the conversation ended:

Receptionist: "Is everything okay?"
Me: "Yes, why?"
Receptionist: "Oh, because you sound a little out of breath!"
Me: "I'm on a vent…"
Receptionist: "That explains it then! Anything else I can do for you?"
Me: "No that will be all. Thanks."
I couldn't stop laughing when I hung up. It actually doesn't bother me too much. I've always thought about if other people can tell I'm on a vent when we're on the phone. I make all my own phone calls to doctors' offices, transportation services, supply companies, medical equipment suppliers etc. I guess unless they've met me or are provided detailed info on me, they probably don't know that I'm a quadriplegic paralyzed from the neck down and on a ventilator. One of the things with talking to people on the phone is that they can't judge based on appearance because it's just my voice.
Unlike some people in my situation, my voice is very clear and loud as opposed to soft spoken and broken up. Occasionally I may pause for a breath but most of the time I can hold enough air in to talk between them. The sound of my voice does get a little softer at that point and then louder when I receive a breath, but overall you can still hear me. I tend to say uh or um a lot when talking because if I'm waiting for breath I don't want the other person to think that I'm not on the phone anymore. It's also the same when I'm in conversation with someone or public speaking. The story must go on, so I guess that's my way of keeping it going with pauses. I was always told to avoid those two words when talking, especially giving speeches. I try not to say anything and just let the break in my sentence happen but it's hard when I've been doing it for so long. That's something I plan to work on.
In the meantime, I'm still going to continue to speak because that's my means of communication. Whether it's on the phone, to someone specific or a group of people, talking is what I love to do. My voice is especially important for giving directions. As many of you may know, I have 24/7 nursing in which they help me with my every need. I direct all my own cares and tell whoever is helping me my preferences on how I like things done.
So anyway, now that I've created this blog post by voice using speech recognition software I will say "that's all folks" into the microphone.


Wednesday, April 25, 2012

Speaking at Hopkins High School

Yesterday I spoke to a class called Peer Insights at Hopkins High School. I hadn't been there since my graduation in 2005. It was weird going back and seeing all the changes that had been made. Memories came flooding back to me as I rolled down the halls to the classroom. I took the same class when I was a junior there and it was by far my favorite. It is designed to integrate people with disabilities and their peers; it is a great concept that gives insight to all types of situations. When I took it, we went on field trips, had guest speakers and did a lot of fun activities.

Upon approaching the class, I was welcomed with open arms as everyone was eager to hear me speak. I shared my story and talked about the challenges I've been through and the obstacles I have overcome. I also spoke about how I continue to stay positive despite my situation and what I'm doing now. They had tons of questions and I showed them my vent and how I move my wheelchair. Then I asked them to share their stories of any challenges or things in their life that they have gone through. I was delighted when hands went up and it was interesting to hear their stories.

Being at the high school was also somewhat of an emotional experience for me. At the age of 16, I was two months into my sophomore year there when my accident happened. After spending six months in the hospital and adjusting to life in a wheelchair with a disability, I went back my junior year. The long days were tough and learning how to be independent while others were assisting me with my every need was weighing on me. My positivity and determination over shined the struggles and I was able to make it through. I graduated on time with my class on June 7, 2005. When I went on the stage to collect my diploma I received a standing ovation, causing emotions to pour out as I sat facing the crowd on their feet. I'm proud of everything I've accomplished so far in my life and look forward to the many things to come.

I encourage those of you reading this to take a step back and acknowledge the challenges, tough times, obstacles, or other things in your life that you have or are facing. Think about the ways you dealt or coped to get through. If you are experiencing situations now in which you are searching for ways to overcome think positive, knowing that there are others out there for support and help.


Thursday, April 19, 2012

A Creed to Live by

Don't undermine your worth by comparing
yourself with others.
It is because we are different that each of us is special.
Don't set your goals by what other people
deem important.

Only you know what is best for you.
Don't take for granted the things closest to your heart.
Cling to them as you would your life, for without them
life is meaningless.

Don't let your life slip through your fingers
by living in the past or for the future.
By living your life one day at a time,
you live all the days of your life.

Don't give up when you still have something to give.
Nothing is really over until the moment you stop trying.
Don't stew be afraid to admit that you are less than perfect.
It is this fragile thread that binds us to each other.
Don't be afraid to encounter risks.

It is by taking chances that we learn how to be brave.
Don't shut love out of your life by saying it's impossible to find.
The quickest way to receive love is to give love.
The fastest way to lose love is to hold it too tightly;
and the best way to keep love is to give it wings.
Don't dismiss your dreams.

To be without dreams is to be without hope;
to be without hope is to be without purpose.
Don't run through life so fast that you forget
not only where you've been, but also where you're going.
Life is not a race, but a journey to be savored
each step of the way.

Nancye Sims

Saturday, April 14, 2012

Ms. Wheelchair Minnesota 2012 Pageant

At the Ms. Wheelchair Minnesota 2012 pageant after a year of hard work and advocacy as Ms. Wheelchair Minnesota 2011!

Me giving my farewell speech at the Ms. Wheelchair Minnesota 2012 pageant

Monday, April 2 was the Ms. Wheelchair Minnesota 2012 pageant. There were five amazing contestants and each of them had a platform that they gave a speech on. The contestants came in early for hair and makeup, had their 15 min. interviews, and then after their platform speech they were asked one final question before the winner was announced. I gave a farewell speech and showed a slide show that comprised pictures of things I did throughout the past year.

The contestants
This year's pageant was a little different compared to last year and they incorporated a few new things. Since Ms. Wheelchair Minnesota is a nonprofit organization, they do fundraising to help get the title holder to nationals and events throughout her reign. At the 2012 pageant they had a dinner in which people could purchase tickets for, a silent auction, and a raffle; companies could also sponsor tables

My year as Ms. Wheelchair Minnesota 2011 was filled with events, speeches and some great opportunities that I wouldn't have done otherwise had I not won. I took my first plane ride since my accident to Grand Rapids, Michigan for the national competition where I received forth runner-up.

I got the chance to inspire and motivate others by speaking to all ages and attending events with my crown and sash. I've also changed a lot (in a good way) over the past 12 months. My wardrobe went from sweatshirts and sweatpants to jeans, sweaters, and business attire. Since nationals in August, I figured out that I could stay up in my wheelchair past 5 PM. Now I don't get back into bed until at least 7:30 PM if not later. This makes my life more enriched and flexible because I'm not bound to a certain routine anymore.
It was a little sad knowing that my year was up, but I was pleased to pass the title over and give someone else a chance to experience the once-in-a-lifetime opportunity I was able to. Like I said before, I enjoyed every minute and the end was bittersweet. I will never forget the things I did and the people I touched throughout my reign.

The first runner-up went to Paula Gleisberg. Her speech was great and I'm very proud of her! I've known Paula since high school and we've been friends ever since. Ms. Wheelchair Minnesota 2012 is Jen Onsum, who is an amazing young woman and I know will do our state proud! Her platform is "Activity is enriching."

Paula Gleisberg, first runner-up

Jen Onsum, Ms. Wheelchair Minnesota 2012
From her biography-"Jen Onsum is an active and determined 31-year-old from Brooklyn Park. Living with Spinal Muscular Atrophy, Jen hasn’t let her disability stop her from her achieving whatever her mind is set on achieving. She is a graduate of the University of St. Thomas, where she earned a Bachelor’s in Journalism / Public Relations. After working in PR for a few years, Jen decided to follow her true passion of healthcare and is completing a degree in Health Information through M State. Jen enjoys volunteering with the Muscular Dystrophy Association, traveling, dancing and playing PowerHockey."

I've posted some pictures of the event. Thank you to everyone who supported and helped me throughout this journey… I truly appreciate it!

Tuesday, April 10, 2012

Drill Away

Last Wednesday I had to have a root canal on one of my molars. I figured out that I needed to go to the dentist when I developed a bump in my gum right above that tooth and it hurt when I touched it. It took a while and a lot of searching to find an Endodontist's office that was accessible and that could do it with me in my wheelchair. When I got there they numbed me up really well and then started drilling away! I usually don't mind the dentist so as long as there's no pain I'm okay. It went well and then yesterday I went back to my regular dentist and he put a temporary crown over that tooth until the new one gets made.

This was my first root canal and crown that I've had. The dentist drilled about half my tooth away before making a mold to fit the crown. The temporary is really smooth and feels weird; I have to be careful with flossing and different foods so it doesn't fall out. After he was done, I went to a different room and the dental hygienist started cleaning my teeth. I must've felt really comfortable because I actually fell asleep while she was scraping my teeth and poking at my gums. When I woke up she was almost done and she said that I kept my mouth open the whole time.

I have to go back in a couple weeks to get the porcelain crown put on. I don't mind getting my teeth cleaned but hopefully I won't have to have any more crowns in the future.