WHO IS SUSIE WEBER?

It seems my life is always pointing me in some new direction. I tend to follow my heart and try to embrace and recognize new opportunities when they present themselves. Life has certainly provided me with obstacles along the way. My life changed forever when I was diagnosed with Multiple Sclerosis in 1987.

I used to say that I’ve worked very hard to never let my MS define me. How ironic is that? I realize now that that’s exactly what it’s done. It DOES define me – not by the negative aspects of the disease – but by the  positive way I tackle life. You don’t need to know that I have MS to recognize that I am very compassionate and have an extraordinary amount of personal drive. It would seem that MS has actually made me a better person.

My 12-year-old son is on the autism spectrum, my daughter has been struggling with ADHD since first grade and my oldest son became insulin dependent at age eight. Because of my experience with MS, I am better equipped than most to endure  these challenges and guide my children over their latest hurdles. In turn, they have become amazing people in and of themselves.

About 6 years ago, I decided to try exercising again. I wanted to see if my body would cooperate. I could barely walk a mile when I started, but have since run 7 half marathons. I am not a star, but find that I am a positive role model, especially when I influence others to be healthier in some small way.

Until now, only my closest friends and long-time associates are aware of my health challenges. I was afraid that learning about my disease might make my business associates and clients apprehensive. I am writing this blog to share with you what's  possible with MS, how I'm dealing with it on a daily basis and what I've learned from my MS peers 

I had the great opportunity to participate in the Leap of Fairth MS/PD expedition to Mt. Kilimanjaro in July 2011. I got me out there sharing the story of what's possible with MS. I am motivated to raise awareness for the disease and learn more from my MS peers everyday. MS has made me stronger in ways I cannot comprehend. 

 

CYBERCAST LINK FOR 
THE MS/PD KILIMANJARO
CLIMB (July 10 - 24, 2011)

I believe we are Team 2


PRINTS

Limited edition prints signed by Susie Weber are still available.

 

MUSIC check out the song

 

SUSIE'S EVER-CHANGING BUCKET LIST

Here it goes (in no particular order)

Climb Mt. Kilamanjaro

Half Marathon on the Great Wall of China

Complete a Triathalon

Draw every day in a sketchbook. Just for me, not for anyone else.

Spend more time with my kids 

Help my parents

Garden (not just in spring, but all summer long)

Submit a short story to a magazine

Take voice lessons (I am sure some of you are amused by this)

Practice Spanish with Josh

Run a full marathon

Travel more

Cook new recipes

Advocate, Advocate, Advocate (for those who cannot and for causes that I believe in)

World peace

Collaborate with Sher on the books we have been discussing

Match all the socks in the basket

See more of the USA

Shoot a pistol

Go fly fishing

Trail run in the Italian Alps

Do Service Work

 

 

Friday
Dec142012

It's coming!

Next week the book about our MS/PD Kilimanjaro adventure with be released on amazon.com. It's a collection of stories written by the climbers themselves. These accounts are inspiring as reveal personal insight into what it took to get to the mountain, how the experience changed lives, and much more. 

Friday
Aug192011

Happy Birthday, Dad!

It's been week since the climb and hope to start posting more my thoughts on trip. I am getting caught up on my day-to-life...or maybe I should say as caught up as I can be. : )

Today is my Dad's 78th birthday and I can't pass up the opportunity to say what an amazing father he has been to me. An innovator, entrepeneur, world-reknown engineer and still he's the best Dad ever. He has always encouraged me to do my best and reach my goals. Starting my own business over 20 years ago was definitely a result of the power of one of his many suggestions. We've always had a great relationship and as he struggles with interstial lung disease I am surprise how our roles shift sometimes.  

My Dad told me he wished he could have climbed Kili with me. Watching Lori Schnieder climb with her 79 year-old father touched my heart and made my thoughts shift to my Dad. As my breathing became more and more difficult I couldn't help but think about his daily need for oxygen. Most of us take for granted things like breathing. On the mountain I was forced to focus on almost every single breath from high camp to the top. It was a labor-intensive process and I was choosing to do this. 

So Dad, here's to you and how amazing you are. Happy Birthday.

 

 

Wednesday
Jul272011

Spreading the news.

I don't know how she keeps going, but she does. She Lori Schneider and her Dad's latest interview about the climb.

Tuesday
Jul262011

WE DID IT!

We did it! Our MS/PD group completed our mission of climbing Kilimanjaro as a way of raising awareness, sharing our stories and supporting each other. It was and amazing adventure and I am still trying to process the whole experience. 


Susie Weber (me) at Uhuru Peak, Mt. Kilimanjaro.

Monday
Jul252011

BACK HOME

Before I begin posting thoughts on the climb I just wanted to say: while it was a great adventure, it is good to be home. 

Sunday
Jul102011

TODAY'S THE DAY!

I am on my way in an hour!

 

Susie

 

Friday
Jul082011

TRAINING

Today I received this photo from one of the people at the gym that would chat with me while I practiced on the incline treadmill. It's one of the few training images I have so I thought I'd post it.

Wednesday
Jul062011

What's Next?

2 years ago at our annual birthday lunch 3 of my dearest friends were absolutely amused when I casually mentioned that I had hoped to climb Kilmanjaro. We were all talking about plans for the future and they were just getting used to my new passion for running. We laughed about everything from my fear of heights to my history of MS vision loss and less than athletic physique (I'm all arms and legs). It was all in fun and we laughed until tears rolled down our cheeks. Maybe it was the margaritas?

You have to understand that that their teasing was not malicious, but meant to spur me on. They know me better than most – quirks and all. Each one of them has since brought up the birthday lunch and said they never doubted that I was going to climb kili – they actually couldn't be more supportive. Seems they get that I never say anything unless I mean it or believe in it. 

I feel so lucky to have such good friends. We've weathered, countless issues including, cancer, death of a spouse, blindness, pregnancies, children, PMS and kicking the diet coke habit to name a few. They are each remarkable women. They are extremely talented, creative women with more strength and personal drive than you can imagine. But now they want to know what's next....hmmm....

Monday
Jul042011

How this whole thing got started for me

I was trying to recall exactly when this whole Kilimanjaro thing got started and combed through my oodles of sent emails and found the email I sent to Lori Schneider after reading the Journal/Sentinel article and MS Connection feature in 2009. 

I've never randomly emailed anyone after reading an article (no matter how inspired I was), but somehow Lori's story seems to hit me just right.

When I was diagnosed in 1987 my neurologists did NOT encourage any exercise that would raise body temperature and told me that walking was about extent of activity they would recommend. Eventually in 2006 I became fed up with me less than active lifestyle (I was so sick and tired of being sick and tired) I began walking with the intension of running someday. My doctor wasn't supportive even when I shared my excitement of completing my first half marathon in 2007...I was clearly healthier ....I knew there had to be other active MS people out there and I would google for success stories from time to time. I used to google for information about MSers who were also active but until Lori's story crossed my path I only found I one MS-running blogger and info on another marathoner who was also diabetic. 

But Lori's story was different and was inspiring and empowering in ways I can't explain. She graciously replied to my email and without another thought I told her to sign me up for the climb. 

 

So, there you have it.

Monday
Jul042011

A few more details about the MS/PD Climb

July 13: We jeep to the Machame trailhead, winding through coffee fields and small forests of ferns and flowers. After registering with the park service, we meet our porters from the Chagga Tribe, indigenous to the slopes of Kilimanjaro. They are an integral part of our African journey and become friends and provide insight into their culture and society. Our climb begins on the edge of a rain forest (elevation 5,800!). Below the watchful eyes of the monkeys, we trek seven hours to the Machame Camp (10,000!) and set camp for the night.

July 14: Leave the Machame Hut, cross a small valley and begin our ascent. The environment changes from heath forest to moor lands. These moor lands are littered with two species of giant groundsel, Senecios and Lobelia. Halfway up the trail we meet a river gorge and ascend across the Shira Plateau (12,300!). We sleep at Shira Camp.

July 15: Today we climb to 14,800! while crossing a ridge and view the plains far below. Here we eat lunch and admire the ancient glacier ice of the Breach Wall before dropping to our 12,800! campsite at Great Barranco.

July 16: We climb up and over the Great Barranco, topping out at about 14,500! before dropping to our camp at the Karanga River at about 13,000!. This completes another day of acclimatization as we pass below the famous Breach Wall, the largest ice and rock face in Africa. The Breach Wall climbing route, known as "The Icicle!, was first climbed in the early 1970!s by Reinhold Messner. Daytime temperatures can reach (80°F), while evening temperatures often drop below freezing.

July 17: From the Karanga River we climb about 5-6 hours to our high camp at Barafu (14,650!). As we wind through beautiful and rarely traveled regions, we enter a high desert plateau, littered with volcanic boulders. Looking south we view the desert plains as the pinnacles of Mowenzi Peak tower before us. At Barafu we prepare for the summit attempt. While our cook staff prepares the food, we spend our time packing and preparing for the early morning, 2:00am departure.

July 18: Summit day! Awake at midnight and prepare gear for the ascent. We climb wearing headlamps until the predawn light is reflected off the African plains. Following a distinct ridge we approach the crater!s rim, then traverse northwest along the rim to the main summit, Uhuru Peak (19,340!). From here we view the Bismarck Towers, rock pinnacles along the rim and the hanging Rebman Glaciers. As the sun rises over Africa, we are privy to a panorama of incredible views. To the north stands the second highest mountain on the continent, Mt. Kenya (17,056!/5199m), with its unique twin summits. The southern exposure reveals the sprawling plains of Tanzania and East Africa and Mowenzi Peak. After enjoying the view from the top, we descend to Barafu, pack camp, and begin our traverse down the Mweka route on the southern side of the mountain.

July 19: The sunrises are exquisite as we awaken below the towering mountain. We descend through the lush green landscape of the Mweka route into the thickest jungle we have yet encountered. The environment becomes primordial, with 20 foot-tall fern trees creating a prehistoric atmosphere. After reaching the Mweka Gate we drive to Arusha and enjoy a celebratory dinner.

Saturday
Jul022011

IN THE NEWS

Read about one of my MS/PD Kilimanjaro Teammates, Paula Sanchez. Paula, I can't wait to meet you!

Friday
Jul012011

More than My MS

So I was checking this site's analytics as I typically do and noticed there were queries for “more than my MS”. I think that's a fitting google search for me and thought I'd share it.

Friday
Jul012011

Counting down the days

9 days 

Wednesday
Jun292011

INSPIRATION

I was so inspired when I read about Kilian Jornet. Here's more.

 

Wednesday
Jun292011

DID YOU KNOW?

The first person to climb the mountain in a wheelchair is South African Bernard Goosen. He did it twice; first in 2003 and it took him nine days and the second time in 2007 when it took him only six days.

Author of the legendary Hitchhiker's Guide to the Galaxy series, famed humorist Douglas Adams, ran up to the mountain dressed in a rhinoceros suit.

The oldest person ever to summit Mt. Kilimanjaro was 87-year-old Frenchman Valtee Daniel.

The meaning and origin of the name Kilimanjaro is unknown. It is thought to be a combination of the Swahili word Kilima, meaning “mountain,” and the KiChagga word Njaro, loosely translated as “whiteness,” giving the name White Mountain.

Spanish trail runner Kilian Jornet has conquered Mount Kilimanjaro in a record breaking time, taking a scorching time of only 7 hours and 14 minutes to run the summit and back of Africa’s highest peak.

Wednesday
Jun292011

LAST MINUTE STUFF

Wrapping up those last-minute details. 

Spent lots of time yesterday getting meds specifically for the Kili trip. Meds for lovely things like traveler's diarrhea and to help your body handle the altitude better. 

The latest suggestion was to pack duct tape to tape your heals everyday to avoid rubbing and blistering issue. I will no doubt need to purchase some of the zebra duct tape! As some point I am just going to have to quite obsessing and be done with this packing stuff once and for all!

Tuesday
Jun282011

HIKING IN THE KETTLE MORAINE

Lately KB and I have been hiking various trails in Wisconsin's Kettle Moraine. Here's an iPhone pic.

KB and I (Susie Weber) ready to train!

Monday
Jun272011

LEARNING TO TELL MY STORY

These days I find myself talking to people about multiple sclerosis more than ever before. I am getting more confident discussing MS in casual business conversation as well. Since the day I sent in my deposit check I promised myself that I would embrace every chance to talk about the MS Kilimanjaro climb and be a more active advocate for MS. Before that time I rarely spoke of my disease for fear that I would be perceived as weak or possibly overlooked for projects. (Having my own business for twenty-plus years I was afraid to take the risk).

But that was almost a year ago and I find that the people I share my story with become more inspired than they expected, too. I can't tell you how many people thank me for getting them motivated to run, back to the gym or just out there walking a little everyday. And a few people even ponder putting Kilimanjaro on their bucket lists and some or just opting in on living a healthier.

I suppose people feel empowered because they know I have never possessed natural athletic ability and if I can do the things I have learned to do so can they. My clients seem to instantly make a connection between the passion I've always had for my work and the personal drive necessary to fight against MS. They tend to be surprised to find out that I have MS, but not surprised by the ways I choose to live with it.

I find most people know someone in their immediate circle that has been touched by MS and can't wait to share the news of our Kili climb with them. Again I find myself humbled by how amazing this journey has been so far and wonder what I will learn from my teammates and how that will further impact my life and others.

 

Saturday
Jun252011

Itinerary

July 10-11 Fly to Arusha, Kilimanjaro International Airport, Tanzania
July 12 Gear checks, briefing, meeting our team of 28 brave souls!
July 13 Climb Kili Gate-Machame Hut 6mi/10km 9,900ft/3000m
July 14 Climb Machame Hut-Shira Hut 5mi/8km 12,500ft/3800m
July 15 Climb Shira Hut-Barranco Hut 6mi/10km 12,900ft/3900m
July 16 Climb Barranco Hut-Karanga Valley 3mi/5km 13,300ft/4055m 
July 17 Climb Karanga Valley-Kosovo Camp 3mi/5km 15,600ft/4760 m
July 18 SUMMIT DAY Kosovo-Uhuru Peak 4mi/7km 19,344ft/5896m
July 19 Descend-Mweka 8mi/13km Shower time! Celebration dinner!
July 20 Safari-Tarangire National Park
July 21 Safari-Visit Masai village & Ngorongoro Crater
July 22 Safari-Ngorongoro Crater & Serengeti National Park
July 23 Sunrise Balloon rise over the Serengeti plains, Homeward bound!
July 24 Home-Sleep for a week, revel in the accomplishment, smile forever!

Friday
Jun242011

MORE than a mountain

I am constantly asked why I am doing this climb.The most direct answer is to teach the world about multiple sclerosis (awareness and advocacy) and inspire others (whether they have MS or not) overcome there daily obstacles and be the best they can be (mentally and physically).

So far this experience has made me stronger and it's a chance for me grow in ways I cannot comprehend. I continue to use the opportunity to try to be a good role model for my kids and anyone I meet. Every day I have the chance to advocate in some small way whether I am training somewhere or at the grocery store. I am getting better at telling my/our story in the business world I have discovered that it is not a defect to have MS, but a way to show depth of character and crush stereotypes. 

I embrace the concept of climbing for my fellow MSers who cannot and hope to dedicate this experience to them. I am also humbled by the generosity of our supporters. So this adventure is about MORE than conquering Mt. Kilimanjaro. It's about the journey that began so many years ago and I look forward to seeing what's next.