Reassessing Your Charity

This is my most recent Dlife column about reassessing your charity. Give it a read, it is food for thought.

http://www.dlife.com/diabetes/information/daily_living/Viewpoints/Michelle_Alswager/charity.html

Godspeed Little Man

A tribute to Jesse Alswager and Trent Nicholson in Death Valley - we miss you.

What's Next for Triabetes You Ask?

I had the privilege recently to share the Triabetes documentary with our local JDRF Board of Directors. At the end of the film I was asked (as I am always asked), "What's next for Triabetes?"

I think this footage speaks volumes for a program that continues to inspire. Enjoy. I'm always proud to see smiling kids next to adults wearing Triabetes jerseys.

10 months and counting

Today marks the 10th month since we lost Jesse. It marks 9 years and 10 months that my friend Jill lost her niece, Elizabeth. It marks 289 days for my friend Bryan who lost his wife, Amy, exactly one week after my Jesse. I will never forget getting condolences from Bryan and Amy only to have her ripped away just one week later.

One year ago today Tracy and Deja were ripped away from this world by a heinous act of murder. I did not know them when they died, or in life. Months after their death I learned of a benefit for domestic abuse put on my Tracy's sister, Lisa. I knew both personally and professionally that I wanted to help this family. Their pain impressed upon me how fragile life is - it was the closest I had ever come to truly empathizing with pain. But at the end of the night, I still went home to my "whole" family and still had a normal day. They didn't.

Shortly after the event they held a check presentation and I felt compelled to bring my kids to meet this amazing family - to see that there are other worthy charities besides curing type 1 diabetes - out there. I introduced my kids to many. Weeks later Jesse was gone.

At Jesse's memorial I will never forget turning around and seeing Lisa's entire family there - to support me. Proof that what we give to this world, is given back. I stood with them without words and just literally "felt" the pain and anguish that coursed through them - which was now coursing through me. They knew.

Tonight I lit a candle for Tracy and Deja in my dining room. Some of you already know that Jesse has a way of kind of hanging out with us and he tends to have energy that is palatable in our dining room. Its happened to me on many occasions. I preface the rest with "NO I have not completely lost my mind, no I am certainly not a Jesus freak I just know now from my own experience that Jesse still exists and I can't ignore that and have just a little bit of peace knowing there's more to this crazy ride than some of the shit handed to us on earth." :) With that said I lit the candle quietly. As I stood the energy changed in the room - something I would have not noticed before Jesse died - and I watched the bright candle go down to the smallest flame. No draft, no wind just me and the room as I watched the candle once again flicker brightly and felt the energy move on.

It is times like these, I can trudge a little bit forward. It is bittersweet to hang the stockings (including Jesse's) and to find joy in the holidays (and not beat some cheery-butthole buying presents for their kids), but I am doing my best. (what?! I would have said something like cheery-butthole before this happened, I'm still ME for God's sake!)

Tonight I wish peace to the Judd family, to Bryan, to Jill, to Bob & Jen, to Charlie and Mel (and little Ella), to Jane, and Deb and to the rest of you who I hope more than you can ever know, never feel what we feel.

Love to all and if I don't get to another blog post, peace and love through the holidays.

xo
Michelle

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.

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/

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.

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!

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

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

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

A note from Jesse

So I haven't had the best day. I would call it a "beating myself up" day. I finally go to the mailbox to find a letter from his teacher. Her note says:

Hi, Michelle. Here's Jesse's writing assessment - so sweet!"

It goes on to tell me that his items await me at school that they cleaned out his locker and that they have created a display case set up as a memorial to Jesse and that kids stop by it every day to pay respects.

I open up his assessment and know full well that Jesse sent it to me in his own little handwriting. It goes like this:

My mom is a very courageous person. She does many things to show how courageous she is. She always does brave things to make my life easier, even if they are difficult.

My mom's name is Michelle Alswager. She always does things to help me. One of the biggest things is she applied for a job at JDRF, a place where they raise money for research about diabetes. She got the job and helped a lot in the community.

My mom is also courageous for her athleticism. In 2006, she began intense training to bike one-hundred and five miles in Death Valley, California. She would bike sixty-five miles every week about three times. She went to Death Valley and completed the one-hundred and five miles in the desert. She enjoyed it so much that she did it four more times!

Then she wanted a harder challenge. SHe decided to attempt Ironman, Madison, WI, a triathlon. Except she couldn't swim and she didn't run. But that did not stop her. She began swimming lessons and started running. She finished Ironman on time. I was so proud!

She is currently working on a making a documentary. It is about people with diabetes doing Ironman. She is working so hard on it. It is almost done. The documentary has taken about two years of filming and will play around the world in film festivals when it is done.

This year my mom got a new job at Brava Magazine. She wanted the job so much! Unfortunately, Brava closed down but my mom gathered her co-workers and planned a way to save the business. They found a new owner and saved Brava. Those are some reasons why my mom is a very courageous person!
____________

It was like getting the biggest hug on the planet....

For those of you who never met Jesse

Jesse did a lot of advocacy in his 13 years. Please enjoy these short commercials he filmed with his good friend, Aaron Liebe (also diagnosed at age 3) over the years to support a fundraiser called "thunder run". If you can get through the commercials, please enjoy the beginning of the outtakes. I smile EVERY time because listening to him talk about bugs, and his shirt that is too big, and Aaron screwing up his lines...THAT was Jesse.

Life Sentence - Jesse Alswager passes away at age 13

I don't have words. But I know I have to give you some. It has now been 10 days since Jesse died unexpectedly to complications of his type 1 diabetes. Tonight my family - now only 4 - went to dinner to try to feel some sense of normalcy...

Those first few days I kept saying to everyone in a fog, "How can I go on telling people its not a death sentence? I've lied to them..."

Joe Brady, a good friend and a Triabetes athlete showed up the next day with a poem he claims was written with divine intervention. Framed, it sits next to me, I write it below:

Life Sentence

Did I say these words to a hundred,
a thousand parents?

"My name is Michelle Alswager
and my son, like your child, has type 1 diabetes
but don't worry,
it's not a death sentence."

My son Jesse, so little, diagnosed at age three
and so early gone at thirteen
I ask myself, what will I tell the parents now?
With eyes closed, I see my son..and know the answer:

Refuse with me to feel sorry for him
For he lived his diagnosis as a life sentence
with no time limit guarantee.

A life sentence to celebrate his days
touching others with his smile and patient ways
chilling with his school friends and neighbors
advocating with Governor, Congress, and doctors to find the cure.

Hanging with Dad at neighborhood parties
loving music, playing his sweet-sounding life melody
carving sharp, crisp lines with Sean on snowy slopes
laughing with brother and sisters at mom's corny jokes.

For him, beating the disease was to never
compromise, yield, submit or succumb
to an affliction whose victories
are counted with each lost possibility and
"can't do 'cause I've got type 1."

Never did he say "pity me" or "it's not fair"
Instead we heard "what's next?" and "let's go" and "cool!"
as he lived his life sentence.

So Please hear me, dear parent with newly diagnosed type 1,
not once did my son yield, submit or succumb
his life was rich, vibrant, a celebration...
Jesse didn't lose - he won.

~Joe Brady

Godspeed Jesse. We keep fighting for you and mom misses you and wishes you were here.