In Kelly’s Words – “Ask Kelly” Q&A

Last week we held Inspire!Vermont and it was an amazing evening! It was a great group of people in the room, a lot of people we know and many new faces. For the presentation we did something a little bit different. Normally I prepare something to say, but this time we had people submit questions and I answered 5 of them, picked at random. It was really fun for me (and actually easier because I didn’t have to prepare a speech!) and I hope others found it interesting. Since we only did 5 at the event I thought I would answer the rest of them here. I’ve also added in a few that I answered at Inspire!Vermont for people who weren’t there.

While this was an event idea, I hope everyone feels comfortable asking me questions about my injury, my life today, or anything! I often say I love working with kids (as a pediatric practitioner) because they don’t have a filter. The questions are so honest and the responses genuine. I’m happy to do it.

 

What’s the strangest question you’ve been asked about being in a wheelchair?

Being a pediatric nurse practitioner I am around kids a lot and they often have funny questions or perceptions about my chair. After the initial “Why are you in a wheelchair” question that I get from them, the next most common is, “How do you sleep?”. At first I was confused by this question, but then I realized the kids thought that since I’m paralyzed that means I can’t move so I must stay in my chair all the time and how is it that I sleep in my chair. It was pretty funny to come to this realization the first time I got this question and then explain to them that I don’t have to stay in my chair all the time and I can get into a bed.

 

What do you do when you are invited somewhere by a friend that you know isn’t wheelchair friendly?

It depends on the situation. If I’m going with Zeke or one of my family members and it’s just a few steps, I just go and don’t worry about it. Getting up or down 3-4 steps is no big deal for me when I’m with one of them, they are able to easily help me up and down the steps. If I’m not going with one of them it depends on how comfortable I am with the friends I’m going with, I sometimes will ask two of them to help me, I can explain to them what to do and my friends have always been more than happy to help. If I’m going somewhere that is really not accessible (like a couple flights of stairs) I have to talk and think about it a little bit more. With Zeke or my family they can carry me up or down (my sister piggy backs me!) if it’s something I really want to do. I almost always try to find a way to make something work, and it almost always does!

 

Do you get mad when people use the handicap restroom/parking spaces?

I will answer this in two ways. Yes, I get mad when someone uses a handicap parking space and they are clearly not handicapped. That said, there are many disabilities that you can’t see outright (prosthetic leg under pants, etc.) and it’s always possible the person who is parking is picking someone up who really needs the spot. Because of this I very rarely say anything, but I do get frustrated with the broad use of the handicap spots.

 

One thing that people don’t always know is that I don’t care about the proximity of the parking spots to the building (though I know this is important for some people who need them), I care about the extra space on the sides of the parking spot so I can open my door all the way to get in and out of the car with my chair. I get REALLY frustrated when people park in that reserved space.

For the accessible restroom I care a bit less. I know that there are limited stalls and if that one is open it is fine for anyone to use if all the others are full. If there are other stalls available I would prefer that people use the others before they use the accessible stall. When there is a long line for the bathroom, I always appreciate it when people let me cut the line to use the accessible stall once it is available – this doesn’t always happen (and I usually just wait in line) but when it does I always really appreciate it.

 

Who was your biggest inspiration during rehab right after your injury?

There was a woman named Sarah Will who is a paraplegic who came to visit me a few times after my injury. She has won something like 12 paralympic gold medals in ski racing. But beyond that she was just a normal woman living in a wheelchair. One time when she came to visit she showed me how she drove and got in and out of her car. She is probably 5’2″ and 90 pounds and she drives a Ford F-150 truck. She showed me how she hoisted herself and then her chair into this huge truck,and I began to be able to envision what my life could look like. It was great to have a roll model like that.

 

Did childbirth hurt?  (We got 2 variations of this question)

No! When I say I have no feeling below my level of injury I mean it. I didn’t feel it at all! There are definitely some perks to this injury and that is one of them! Towards the end of my labor and delivery (the last hour or so) I would get a really bad headache with each contraction that would go away between contractions, but that was the only pain.

 

When you dream are in standing or in a wheelchair?

Both! (I answered this question at Inspire!Vermont and I love it!) It is completely random and varies whether I’m in a chair or standing in my dreams. Regardless of which one it is, it’s never a big deal or a part of my dream really, it just is what it is. A few times I’ve had a dream that if I try really hard I can walk. I always think, wow this is so cool, I just have to try really, really hard! It doesn’t work like that in real life!

 

What has been the biggest challenge of motherhood?

Stay tuned, I’ll answer this in one of my next few blogs!

 

Does Zeke micromanage at home as much as he does in the office?

(Do you actually want me to answer this??) Ha, I think he would say I micromanage him!

[EDITOR’S NOTE – I thought we made a pretty strict no staff questions rule…..]

 

Do you like older guys?  

(What….?!) Well Zeke is older than me so I guess I do.

 

What is your favorite part of the KBF?
Grant application review. It is always so fun to read about why people want to be active and what sports means to them. One applicant this spring said he wants to feel like he’s living and not just existing and sports does this for him. How can you say no to that?! I can relate so much to that feeling. I remember so clearly what it felt like to think I wasn’t going to be able to be active again and how happy I was when I learned about adaptive sports. Reading the applications always brings me back and motivates me to try to help even more people.

 

Dylan Update:
Dylan turned 1! About a week before her birthday she FINALLY started eating foods beyond just purees. I have realized that she will do everything but we can’t push her, she’s going to do it on her own timeline. So for her birthday I made her a little cake for her to eat and/or destroy. She did both! She started eating it and loved it, she was all about the frosting. After a while she realized she could hit it and she had a blast completely smooshing it, then wiping her dirty hand all over her face. It was great and so fun to watch!

In Kelly’s Words – Spring! The cure for cabin fever….

Exhausted on an April 1 powder day.

 

I’ve recently felt like I’ve had cabin fever. As the weather warms up, all I want to do is get outside! That’s not to say I haven’t been active this winter, I’ve done a bunch of skiing, including my first real powder day since my injury just a few weekends ago (which was extremely challenging but still a ton of fun).

 

But as my daughter Dylan gets older and more mobile I’m getting more excited about finding things outside to do with her. At Inspire!Boston on March 30 (full recap here), we showed this video about a grant recipient and mother named Amber, which got me even more excited about doing things with Dylan. Amber (who was actually my roommate while I was first in rehab after my accident) has such a great attitude and I’m so excited that we were able to help her get out with her kids – it’s inspiring to me!

 

Amber biking with her 2 sons.

As the thermometer hit 60 degrees today in Vermont it really started to feel like spring. I plugged my golf cart in for the first time this season, looking forward to both getting on the golf course but also using the golf cart (which is really more like a power wheelchair that stands me up so I can swing a golf club) to go on some terrain that I can’t easily go with my regular wheelchair. The roads were filled with bikers and I got anxious to dust off the cobwebs and get back out on my handcycle – less than 5 months until the Kelly Brush Ride!

 

A NEW activity I’m excited to try is off-road handcycling. This is a sport that has grown a ton over the last 5-7 years. It started with a few guys making these machines in their garage and has turned into an incredibly popular sport. Technology! It allows you to mountain bike or “hike” in places you couldn’t get with a regular wheelchair or a normal road handcycle. My hope is I could use this while Zeke walked with Dylan – I’m fully anticipating that going up I’ll probably be going walking pace!

 

My first off-road trial June 2016

I’m trying an off-road handcycle this week with Vermont Adaptive (along with our awesome intern, Keenan, a recent C7 injury) to see if it’s something I’d like to get more into. I tried it once, but it was a model that didn’t work well for me and it was in the first 2 months after I gave birth to Dylan, so I’m not counting that one….

 

I still have the last of the money raised by the Middlebury Ski Team at the first Kelly Brush Ride in 2006 for me to spend on adaptive sports, so I’m considering using it for the off-road. For anyone that doesn’t know the story, the very first Kelly Brush Ride was planned by the Middlebury Ski Team (my teammates at the time of my injury) to raise money for me to buy adaptive sports equipment. They set a goal of about $10,000 to buy me a monoski so I could get back on the mountain with them. They ended up raising $60,000, money I’m still using to purchase adaptive sports equipment today! I couldn’t be more grateful!

 

Being active is a huge part of my life and the change of a season always gets me excited about the activities I haven’t done in a long time. Now I can find ways to get Dylan involved which will make it even more fun!

 

Dylan update:

 

Dylan with 10 month-old cousin Sully Getz!

Dylan turns 1 year-old in just 2 weeks! Holy cow (or “jeesum crow” now that I’m back in VT)! I can’t believe she is already a year old. Thinking back on a time before we had her feels like forever ago, but time is starting to go fast. Our biggest struggle with her these days is eating. She will eat pureed foods but doesn’t want to eat food that has texture. The one thing we’ve gotten her to eat consistently is cheese, we’ve tried a ton of other foods but she’s just not into it. I’m sure like with many things, we just have to keep trying! I’m planning to make a cake for her birthday, I’m excited to see her level of interest when she tastes that! If she’s anything like her mom she’ll love the sweets!

In Kelly’s Words – Skiing with Naomi (and flashbacks!)

 

Learning how to monoski is really hard. It’s a completely different feeling than skiing standing up. All the little adjustments that you make from core, to hips, to thighs, to knees, to ankles, to the bottom of your foot—just inches off the snow—ends for me at my sternum.

 

A couple weeks ago we hosted a “Ski with Kelly” at Sugarbush with an idea as simple as: “let’s get a bunch of supporters and grant recipients together and go skiing”! The weather wasn’t ideal (though the snow conditions were great, kudos to Sugarbush!), but we had a great group turn out. In total we had 7 monoskier with a huge range of ability, from Chris Devlin-Young, one of the greatest living monoskiers, to relative beginners like Naomi, a 2016 KBF Grant Recipient who is skiing for only her second winter (and doing really well!).

 

Watching Naomi ski felt like stepping into a time machine. I could literally have been watching myself ski the first couple years. The instability, the anxiety when I felt like other monoskiers were watching me, the constant falls when I was on a steep section of a trail. The whole experience of watching her ski brought me back to when I was first learning. Even her skiing style, how her head would tip into the hill and she leaned forward as she was starting her turn, reminded me of myself when I was starting.

But let me be clear: Naomi was much braver and a quicker learner than I was! Being a 19-year-old college kid, I decided to just teach myself to monoski. That was a mistake and it took me a couple years before I really felt comfortable and independent. I’m sure I could have had a different experience if I went through an adaptive programs (like Vermont Adaptive or Spaulding Adaptive Sports, who both helped us out with the “Ski With Kelly”), but hindsight is always 20/20, right?! Naomi is on a much better track!

 

Naomi – if you’re reading this, you’re doing great! Can’t wait to ski with you next time and we’ll have you ready for that trip to Whistler in no time!

 

Dylan Update

We have a crawler! She was a little late to the game with crawling, but you won’t hear complaints from Zeke or me! Now that it’s game on, it has been really fun to watch her crawl around and explore her surroundings, but we’ve realized how much we need to baby proof! So many low shelves with books, papers, or knick-knacks (obviously things are on low shelves for me!). She also loves our dog’s water dish! Both Zeke and I have commented that seeing her crawling makes her seem so much more grown up. She is still very smiley and happy (most of the time!) and watching her explore and learn about her world is so much fun!

In Kelly’s Words – I teach now?

 

Last week I spoke to an undergraduate entrepreneurship class in Boston. Not because I have any educational or entrepreneurship skills (well, other than starting a foundation…), but because they’re looking into something that I live everyday.

 

The back-story: my mother-in-law, Mary, is a professor of entrepreneurship at Babson College. She is teaching a semester-long workshop that applies a design thinking approach to a single problem over the course of the semester. She enlisted Zeke and me to help her come up with and frame the “grand challenge”. Our challenge for the class: “How might we better improve outcomes in the first year following a traumatic injury causing permanent physical disability”.

 

After making a video to introduce it the first week of class, last week Zeke and I went down to talk with the students. They pitched us on their rough ideas, asked for our feedback, and we provided resources and topics for research that may be helpful.

 

It was really interesting. It allowed me to see what someone with zero experience with a physical disability (like me when I started college) perceived as the biggest obstacles following a traumatic injury. A few groups focused on accessibility of public transportation. Another group talked about accessibility of college campuses and ways to incentivize campuses to become more inclusive. Higher education is prohibitive for many because of cost, but it shouldn’t be because of accessibility!

 

One group focused on mentorship between previously injured and newly injured individuals. I think facilitating mentorship is ripe for progress. There are a lot of mentorship programs out there, but it is always hard to match people with similar interests and backgrounds. Often the only thing people have in common is the injury! Hearing from someone who is in a similar situation and how they managed everything that you are now facing is huge, but it has to be someone you connect with—and are willing to ask personal questions to.

 

When I first presented the Grand Challenge I assumed they would all focus on employment. We even quoted some pretty startling statistics about disability and employment (the numbers vary, but no study shows more than a 33% employment rate). Surprisingly to me none of the groups focused on or even talked about employment. It’s obviously a big obstacle but an incredibly important step. It’s too easy to get wrapped up in staying home and feeling as though you can’t contribute. Employment can not only provide financial benefits, but it can also show an individual that he/she can still be part of a community, engage in society, and be social.

 

From my perspective, sports and recreation are incredibly important to recovery. I believe that sports and being active allow someone to engage with society and learn they can do everything they did before, just maybe in a slightly different way. That was certainly my experience and what led me and my family to start the Kelly Brush Foundation.

 

The class at Babson has all semester to focus their idea and come up with a plan. I’m excited to follow their progress and see what ideas they come up with! Do you have any ideas? You can email me at [email protected]

 

Dylan Update

We had our first plane ride! We traveled to Colorado for Inspire!Denver (read the recap here) a couple weeks ago and brought Dylan with us. She doesn’t sleep in our arms well (she’s a great sleeper, but she only likes to sleep in her crib) so we were nervous about her naps during our travel days. She only napped for 15 minutes total on the way out, but slept for a couple hours on the way back. On the way home we had flights later in the day so she was tired and slept most of our last flight. Even though she didn’t sleep much on the way out she was generally really happy and didn’t cry much at all. The key to keep her happy was new and novel toys—the airplane cups and our snack wrappers worked great! Traveling for Zeke and I was much less restful and more stressful, but thankfully Dylan made it pretty easy!

In Kelly’s Words – A new sport (for me)!

 

fullsizerender-5I find that I appreciate sports a lot more than I did before my injury. Which is saying a lot because my life before my injury was all sports: an NCAA ski racer; graduate of a ski academy; my mother was an Olympian; my father a former college football player and skier and then coach. As I always tell people when they ask why we started the KBF, I thought after my accident that I would never be an “athlete” again. Then I learned about adaptive sports and what I could still do. Sports are inclusive; I don’t feel different or excluded. This is huge for everyone in the disabled community and one of the missions of the KBF.

 

Well almost 11 years after my injury, I experienced a new one over the holidays: hockey. And being included was incredible!

 

My parents have a pond in their back yard that we used to skate on in the winter as kids. Over the last several years since my sister moved back to Vermont and then we did this past summer, we have started maintaining the ice again. But in the years since my injury, I could never skate. I went on it with my wheelchair a couple times and a few times sat on a sled and my family pulled me around. But I wasn’t skating and often I stayed inside and watched because I was cold just sitting not doing anything active.

 

This winter, though, my parents gifted me a hockey sled for Christmas! I had never tried it and always thought it looked hard! When I got in it for the first time it was simple and amazing! I use two small hockey sticks that have picks on the end to push myself around on the ice. Now I’m out on the pond skating with my family, passing the puck around, and pulling Dylan or my nephews in a sled behind me. It has been a while since I have played a new sport but it felt great to just be out on the ice with everyone again.

 

To be clear, we’re skiers, not hockey players. It must be really funny for good skaters to watch us all out there fumbling around in ski helmets, but that’s what makes it so fun!

 

Now, what do I say to Patrick Standen of Northeast Disabled Athletic Association who’s been recruiting me to get on the ice for the Vermont Sled Cats for years?!?!

 

Dylan Update:

img_7115We have had our first real illness! She has had colds throughout the fall but she usually felt fine, they were just mild coughs and a runny nose. And we even had a little bit of a stomach bug with some vomiting and diarrhea a couple months ago. But last week she had her first high fever (up to 104) and was a really unhappy and miserable looking kid. Being a pediatric nurse practitioner I see sick kids every day and assess what is going on with them and what to worry about. This helped a lot…. Well, kind of…. It’s extremely hard to be objective with my own kid, but the knowledge helps. It has been a long road with fever, coughing, vomiting, an ear infection, and a kid who won’t sleep or eat well, but I think we are on the other side of it now. It’s sad to see Dylan so miserable but she was also very cute and cuddly so that made it just a little bit better. As all experiences with Dylan, I hope this will make me a better and more empathetic nurse practitioner!