Tuesday, November 9, 2010

My Take on "6 Things You Need to Know About Diabetes"


Today is "D-Blog Day". Started in 2005 during Diabetes Awareness Month it was created to create more awareness for diabetes.

I've watched all my "blog-colleagues" (I wonder if that is in wikipedia yet?) post about the bad things....and the myths and the struggles.

So my take is going to be a little different. Bear with me.


1. Diabetes builds character.
The people I know with diabetes are some of the finest human beings on the planet. Whether they have diabetes, or have a child with diabetes they care deeply about one another. They live their lives to the fullest and teach us about compassion, strength and love.

2. Diabetes makes you do crazy things.

Yes, like creating a documentary when you have no experience in film. Or ride your bike 105 miles through a desert. Or do an Ironman.

3. Diabetes makes you forget about other health problems.
Yes, for instance when Jesse was six months old we discovered he had a congenital birth defect of his left eye (no nerves on the left side so he couldn't look left). Or perfect baby was no longer perfect. With the onset of diabetes and his adaptive nature to learning how to turn his head so no one noticed his eye, we almost completely forgot it existed! Yes, folks, diabetes put perspective on other pain.

4. Diabetes pisses me off so much that other things seem small in comparison.

What? I didn't get a raise? My daughter missed the school bus? Dinner won't be ready until 7 pm? Yes, thank you diabetes for helping me to not sweat the small stuff.

5. Diabetes got me active in politics.

Oh, diabetes, you launched my political career - I mean before you, did I care about embryonic stem cell research or know what the NIH was or meet with legislators?


So you might be sensing hostility at this point. Maybe. But #6 has meaning.

1. I wouldn't be who I am today if it wasn't for diabetes.
When Jesse was diagnosed with diabetes 10 years ago my life path - and career path - was much different. My passion to find a cure led me to working as an executive director for two diabetes organizations and then onto my current position at BRAVA Magazine (I had met the owner of the magazine when her son was diagnosed with diabetes). And I love my job. I love the people in my life. And I am blessed to know all of you.

Wednesday, October 27, 2010

A first time rider in Death Valley - Mollie Shambeau (with Sean Busby)


So I couldn't resist posting her blog about the Death Valley ride. She does such a good job explaining its the love of people that drives us forward. Enjoy. I'm very proud of them for riding with us...


http://themollieshambeaushow.com/2010/10/28/128-degrees-on-the-pavement-in-death-valley-calif-need-i-say-more/

Friday, October 22, 2010

Miles 23 -in memory of Jesse in Death Valley





On 2/2/2010 I sat at the dinner table with my family. I had recently been talked into doing the JDRF Ride to Cure Diabetes by my friend, Tim Kritter. He said it was time to return from my self-imposed exile. We decided on the Lake Tahoe ride because we hadn't been there - after all, I had already been to Death Valley 4 times. Charles was teasing me about going to Tahoe - he and Jesse relentlessly teased me about my love for the ride party. Of course I got totally upset and then Jesse said, "Mom. Seriously, you need to chill. We know what you do for me with diabetes." We hung out and had a great night watching Kindergarten Cop together. In the morning he told me he wasn't feeling great. No big deal - a bad 'd' day. While I got ready for work I created my fundraising page and emailed it to all of my friends and family for donations. I said to them that it was time for me to get back in the saddle because diabetes doesn't rest for Jesse, why should I?

He died that day.

I can't explain the strong pull I had to return to the Valley. I called my friends and said, "forget Tahoe, we need to go back." On the day of his funeral, we all made the switch to return. And a new journey began.

The 8 months it took to get from that moment to the hot sand and stark beauty of the desert were more brutal than you can ever imagine. Each day was a challenge - not training, no, just being alive and missing him. I was surrounded by friends and watched them one by one sign up to join me in Death Valley.

As we trained we ordered special jerseys - Godspeed Jesse jerseys. They arrived in time for us all to bring with us to Furnace Creek. Upon arriving at the ranch I see friends not just from my chapter but Anne Findlay from San Fran, Sue Morgan "Carmel Sue" of Utah, Mike Crowley of Milwaukee, Jerry Jorgensen of Little Rock, not to forget Triabetes athlete Jerry Nairn whom I never met yet was there to ride for my little man and the best faces in the world to finally see - Bob and Jen Nicholson. You see, I met Jen and Bob shortly after 3/25 - which sadly is the day their 14 year old son, Trent, died from diabetes. A bond was made during those horrible weeks and seeing them after months of phone calls and emails it was like we had known each other for years. And watching my friends embrace them as their own was overwhelming.

Tim St. Clair surprised me the Friday evening before the ride by dedicating a mile of silence in Jesse's honor and the announcement that the mile would continue for years to come to recognize all that are lost to this disease. It was also a strange honor to receive the top recruiter jersey and set a new record for most recruits. Joy mixed with a lot of pain.

Before the sun rose we made our way to breakfast me dragging Charles along for his first experience. I was worried how he would react - would he see the beauty of this experience? Would he feel the way I did in 2004, the almost spiritual journey out to Jubilee Pass? We donned our Jesse jerseys and made it to the starting line. Quickly it was decided by my team that we would stop at mile 23 as a team - no matter what - all together to honor Jesse.

As we sped down to Badwater we laughed and smiled and enjoyed the stark beauty and the love for one another. It was a literal Jesse train, his smiling face everywhere. It was beautiful. We all got off our bikes - someone made a cross with rocks - to this day I don't know who. We gathered for a photo as I watched Sandy Thompson cry and I said, "No. Not now. Not today. Today we push forward and we are strong." The heaviness was quickly broken by Jerry Jorgensen, a comical man with diabetes when he crouched down to test his blood sugar and screamed, "Oh my God! I'm bleeding! I'm bleeding!" (he was 68 by the way, way to check Jerry!).


As the photos are snapped we rode off together in a sea of Jesse's. I caught up to Bob Nicholson in our silence. A nod, a painful smile and a knuckle-bump for Trent and Jesse.

We break out to mile 24 with the sun breaking along the next alluvial fan and we change our gears to enjoy this brutally hot yet beautiful day that even forced the one lone coyote into the shade of one roadside sign.

For those of you who have been to Death Valley you know the ascent to Jubilee Pass is difficult, relentless, hot and well - UPHILL for six miles. 113 degrees on the bike computers this particular year, to be exact. You bring that gear down and you crank. I am no stranger to it as I had climbed 4 times prior. But this particular year my body said "no." Halfway up I find myself walking. And angry with myself. I'm hot. I'm pissed off. My two coaches Joe Brady and Dan Rotert are circling me like caring buzzards. My mind is racing as they point out cloud formations to distract my pain and overexertion. I laugh out loud and say to Joe, "Are you KIDDING me? You are pointing out clouds? Dude! I'm the one who is usually doing this to others on this climb, you can't fool me!" More pain and frustration. With one mile to go up I simply give up. I can't make it. I'm holding tightly a vial of two used test strips. I had brought them from home. I hand them to Joe and say, "take them. I can't do it. You know what you need to do." But something took over. I had a goal, I was going to get there.

This isn't a story of some courageous last climb. Nope. Instead its a story of finding a sag wagon to put my sorry ass in. But the beauty of that moment is I'm so relieved that I will make it to Jubilee that I start helping others who are sagging to the top, I ask them where they are from, I help load up their bikes, I get them water from the sag wagon to relieve us from drinking the hot water in our bottles. I'm back! The "me" is back!

At the top of Jubilee I see friends Mollie Shambeau and Sean Busby overheated and waiting. There's Amy Eager and Bob Gorsuch. And here comes Sandy Thompson and Craig Midtlein climbing. Jeremy Scherbert, Chris Rotert...the gang is here. We get up to the sign and with tears and hugs Sean and I nod and place a used test strip down the rusty metal poles of the Jubilee Pass sign knowing a true part of Jesse will remain there forever.

You might also think this story should end with me getting a second wind and getting my butt back to the ranch. Again, no. But it was just as glorious. As I coast back down to Ashford Mills I pick up Sandy Thompson and say "I'm done, sag please." I get in the car of Cheryl Sargeant, volunteer cheer. I look in the mirror and see what everyone was concerned about - white blisters have formed all over my face - I have sun poisoning. I made a good choice. We drive awhile and pick up a tired Sean Busby. I can tell you, however, that sagging in with Cheryl, Sandy and Sean was amazing and leaning out the car to cheer my amazing teammates through was worth every second. It was not failure.

The reat of the story is the same for everyone - beauty of crossing the finish, hugging those who are out there for the first time and knowing they will be back. I think most of Charles who came into this unsure of whether or not he enjoyed cycling who didn't really "get it" 100%...but after his journey and we were home he said, "I want to do this next year and be trained and hammer this thing and be in by 2 pm." Yeah baby....welcome to the itch.



I am a proud JDRF Ride to Cure Diabetes Rider and I look forward to my next journey with the new group of new friends and old friends. I think you should join me.

Godspeed Jesse, you were in our hearts the whole ride.

Friday, September 3, 2010

A Viewing of the Triabetes Documentary - October 12th

I know - finally! The Science of Inspiration has been shown in many cities - but not Madison! For obvious reason I have been a little awol from this project. Today marks the 7 month anniversary of the death of my son, Jesse. I say this not to scare you, or to instill fear, I say this as the means of "keep educating, keep learning, keep reaching" and find a cure for this wretched disease.

The specifics:
Tuesday, October 12th
Gray's Tied House - Verona
6 pm, cash bar
7:00 pm - viewing

The show itself is 50 minutes long - expect something you might see on Discover Channel. We have a large screen tv and private room for our group.

I hope you can make it!

Sunday, July 4, 2010

Month 5 - time to train - time to reflect

Hello Triabetes blog readers. I know, I've been MIA. It's been a tough 5 months since losing our Jesse. There are days it feels he is still going to come through the door but in some ways it feels he has been gone so very long.

I won't go into every aspect of my life about that, here. There is plenty written elsewhere and I've been documenting it all in my a book I hope to publish about grieving. Its been a bumpy road with immense sadness and other flickers of slight joy and smiles.

Today is a new day of sorts. While everyone pretty much knows I'm doing the JDRF ride in Death Valley this October in Jesse's honor, most also know I haven't done much as it relates to training for something - anything. I've watched some good friends as they continue their racing - such as the Wimmers who ran the Madison Marathon in Jesse's honor sporting a tshirt with his image and the words "Godspeed Jesse", or Darren Fortney, who wears a guitar pick of Jesse's around his neck and taken it through Marathons, Ultra-swims and cross-country ski racing. Darren feels Jesse guiding.

My friend Theresa Hineline emailed me about a 1/2 marathon she wants to do in about the most northern portion of Wisconsin - Ashland, Wisconsin, to be exact. The race is called the Whistlestop. Now, I've never done a 1/2 marathon (I don't count Ironman, that's just a whole other animal). So I said what the hell and signed up.

Where the hell am I going with the story? I'm sorry! It's been forever since I talked to you.

Anyway, today I laced up my shoes in my 20 lb heavier body and did my first day of training - an easy 2.5 miles. What makes my training meaningful to me?

I am wearing a bracelet that says "In Memory of Trent Nicholson", a young man who would have turned 15 on 6/22 but instead joined Jesse just weeks after him in what I now consider (and hope) to be the more meaningful part of our beings. I have become close with Trent's family and will be riding with his parents, Bob and Jen, in Death Valley. I wore my cure diabetes bracelet that I once created on an airplane coming back from my first century ride in Death Valley, that has always symbolized what I do for Jesse. I wore my 3/3 hat - the date of his diagnosis, 3/3/2000. And I wore of course my Triabetes t-shirt, a documentary that came to my brain for that same light - Jesse.

Now, a few weeks ago I flew to NYC to film a new segment on Dlife to talk about Jesse. On that trip I lost my ipod somewhere between the banter in the Chicago airport bar, and my nightstand. Today I picked up Jesse's ipod. I ran listening to HIS music and what inspired him. I plan to leave it "as is" for my training for this race.

The beauty of what I hear is not the lyrics. In fact years ago someone would tease me a lot about how I listened to the music and not lyrics. I changed that and begin to dig more and more into lyrics. But today when these lyrics came on, as tears started to run down my face at the lyrics, I switched back to the sound of the music, specifically the guitar and found myself laughing, smiling and knowing that Jesse dug this tune not for the lyrics, but for the guitar he played and learned. But if you are a lyric person, please listen close and read the last line of the song. It is the pair of shoes I stand in for this moment at least.

I share with you the beginning of my journey. Moving forward, one day at a time.

You inspire me every day, Jesse Thomas Alswager. Stay cool.
MOM

"Lonely Day"

Such a lonely day
And it's mine
The most loneliest day of my life

Such a lonely day
Should be banned
It's a day that I can't stand

The most loneliest day of my life
The most loneliest day of my life

Such a lonely day
Shouldn't exist
It's a day that I'll never miss
Such a lonely day
And it's mine
The most loneliest day of my life

And if you go, I wanna go with you
And if you die, I wanna die with you

Take your hand and walk away

The most loneliest day of my life
The most loneliest day of my life
The most loneliest day of my life
Life

Such a lonely day
And it's mine
It's a day that I'm glad I survived

Friday, March 26, 2010

Jesse - a slideshow by his sister, Sam


I wanted to share this video with you all. Sam put this together for the funeral. When we hear this music, we know he's with us.

http://www.youtube.com/watch?v=L8yNxqWoasg&feature=channel

Tuesday, March 2, 2010

10 years - almost... 3/3 has arrived

IN HONOR OF JESSE PLEASE WATCH THIS VIDEO AND SPREAD TO YOUR FRIENDS.

http://www.youtube.com/watch?v=QPDS2V1AF9w&feature=channel


Tonight as I write I am sad. A month ago tonight, might life was "right". Great job, great people, loving family. I had just had dinner with Jesse and had just snuggled in to watch Kindergarten Cop. We sent Joey off to bed and finished the movie. I shewed him off to bed because he had school in the morning.

The next day he was gone.

I'm not alone in missing him. Countless others. Nothing more heartbreaking than watching 13 years old miss their friend. Sisters and a brother...a dad...its horrible.

3/3 is tomorrow. Diagnosis dates are an anniversary we all remember. I will be wearing my 3/3 hat tomorrow in remembrance of Jesse's sad anniversary. I will be going out to eat with his close friends, his dad, my kids, and of course Charles and our friends. Together. Funny how something like this makes you forget all the other things.

Samantha, his sister, and her friend Karly filmed this video just weeks before he died for a school project. What you don't see off camera is how he fought with us and didn't want to film it - he was SO tired of talking about his diabetes.

This is how I will forever remember my Jesse. We love you little man. Your heart is big, your smile bigger. Love, Mom