Wednesday, October 14, 2009

Thoughts of Michelle

My niece, Michelle Duesterhaus Tang, died Saturday at her home in Virginia with her husband, Jason, and mother, Judy, by her side. Her full obituary can be found here.

You may have joined me in following her ongoing journey. Since shortly after Ken and I started blogging, we’ve had a link on our blog sidebar labeled, Michelle’s Journal. If you haven’t had the opportunity to read some of her entries, I hope you’ll take some time. Her last entry was posted 48 hours before her passing. As things started getting tougher for her, it was her journals that drew me all the closer to her. Of course, like anyone who has done writing online, I know she sometimes held back from posting on those dark days when she had nothing good to say. Those were probably the days that her Mom and her husband were there for her to vent. But overall, she offered up to the universe a wonderful gift of herself, allowing us to travel along with her on this difficult journey, with her honesty, transparency, imagination and unique humor. In this way, she made an immense contribution to enriching the life experience of her friends and family. In that sense, if our life journey is meant to be one of experiencing all facets of being human, then Michelle's journal brought us a much deeper sense of what it is to be fully human and is but one of the many unique ways in which Michelle’s life had special purpose and meaning.
Since a blog is by definition a personal online journal, and since Michelle did such an awesome job of that style of journaling, I’ve tried to approach this post in that fashion, focusing on Michelle’s impact on and moments with me personally. They say everyone deals with such loss in their own way. Putting my thoughts down here seems to be my way.

Michelle with her cat, Schucks, who appeared quite please when we brought her back home from the hospital - August, 2004

Michelle’s battle with Acute Lymphoblastic Leukemia (ALL) started way back in August 2004. I had the honor of spending a week with her in Albuquerque that month in support of her first brave steps into her 5+ year heroic battle. The decision to make this trip was not easy for me for a couple of reasons. First, because of some family circumstances, beyond Michelle or my control, we had not gotten to spend nearly as much time together as I would have liked when she was growing up. Second, I had been blessed, up until this point, that I’d made it in to my late 40’s, without the need to be there for a friend or family member dealing with cancer. That said, I’m so very, very glad I offered to make the trip since it opened the door to allow Michelle and I some much needed ‘catch up’ time, and even though it was not under the best of circumstances, in a way, that circumstance allowed us to not waste time--- we were just immediately linked.

Michelle and I at her wedding

Those who have lived around both Michelle and I would not be surprised that we seemed to fall naturally into a common wavelength. It always made me feel good when people said Michelle looked like me. In fact, I often imagined that had I had a daughter she might have been a lot like Michelle. Besides the physical similarities, there were many other notable similarities in our lives from the very beginning. We both were born in to Duesterhaus families to parents who thought they were long past bringing any more children home. That meant our early years were spent living with and learning from a family of mostly adults. We were each brought home to the same white frame house on Point Pleasant road, just one slough and a long cornfield away from the Mississippi River—a home that was, unfortunately sometimes in the Mississippi River. In fact, in our youth, both of us ended up moving with our families out of the ‘bottoms’ permanently as a result of the floods.

Like me, but 20 years later, Michelle was the tall lanky smart girl at St. John the Baptist Grade School and Quincy Notre Dame High School. I remember being stopped at the grocery store by one of our shared high school teachers to hear how he was amazed to have met her and thought he was having a 20-year flashback of Cindy Duesterhaus walking in to his classroom.

Michelle and I joked that, like there is for everything else these days, maybe there should be a support group for girls who are the smartest and tallest in their classes. There are a lot of social stigmas involved - - like, how many guys are there who want to date a girl who’s smarter and or taller than they are!! It has its own way of impacting your personality and your view on life. Michelle and I, we really got that similarity about each other. We never got to play the sweet, cuddly, little girl thing. We didn’t always fit in, didn’t always think the way the people our age thought or put importance in the same things. We got to talk about things like that when I took her in her wheelchair on walks that first month after her diagnosis and start of chemo. Those are very special memories for me.

I also got to see something else about Michelle that made me proud to be so linked. Although our career fields were different we both seemed to find our niche in the working world when we were handed projects with problems to solve that pushed for new ideas on roads-less-travelled, requiring detailed research, planning and execution. For this kind of work you have to not only be smart but be very attentive to detail and have an assertive, in-control personality. While I didn’t get to see this side of Michelle at Sandia Labs, I saw her use that same set of skills as she switched gears quickly from professional research engineer to professional cancer patient. I remember sitting in her hospital room as, using laptop and telephone, she worked her way through contacts all the way up to the experts on leukemia at the Atlanta Center for Disease Control. Michelle quickly understood her disease, the treatment options and the science behind it all, in detail. She never allowed the doctors to talk over her or around her and stayed clearly in charge. She made her project leader aunt quite proud!

I also remember that same month was when Tim McGraw came out with the song “Live Like You Were Dying”. <--Thought you might enjoy listening while you read rest of blog so opens in new window (yes, I'm also Michelle's geeky code-writing aunt!!)....Michelle was the one to tell me to listen to the song. Even then, she was facing the potential that this was a terminal illness. I found myself in tears so many times listening to the radio and that song as I drove. The words fit her so well, almost as if it was a personal message to and from her, and she lived that message for the next 5 years as if that were her theme song.

The newly wed Michelle and Jason

Enjoying the wedding festivities

She did a lot of big life living after that -- things like marrying, Jason, the love of her life, and travelling. She also did the smaller but just as important life things like going skiing, trying new foods and cooking, and enjoying lots and lots of time with family and friends.

Breakfast at our campsite, Michelle and Jason's little tent in background

I remember, shortly after we got the motorhome, when we asked if she and Jason would like to join us for a weekend at a local state park when they were in town and she jumped at the invite. Only thing, she really wanted to do the real outdoors camp thing, with tents and sleeping bags. Even when they predicted storms overnight she was insistent that she really wanted to sleep outdoors and couldn’t be coerced into moving in to the motorhome for the night. When I woke to the sound of thunder and heard the raindrops, I felt so guilty in my nice warm bed while she was in a little tent with Jason—but you know, the really cool thing was she just wanted to do it all, her way, and you found you just wanted to let her. She wanted to be fully alive in the moment, the way she wanted that moment, and you dare not treat her like a sick person.

Michelle talking with her cousins our 2008 Christmas gathering

Last Christmas, Michelle and Jason joined the rest of our extended family for a gathering at our house. She spent most of the evening sitting around the table with her fellow cousins. We all knew at that time that the cancer was back again and yet it wasn’t a topic of discussion. At one point, I came around the corner and the look on Michelle’s face struck me. It’s hard to explain, but it was as if she had her ability to absorb things around her set on super-high, I sensed she was drinking in the event, recording it all, feeling it all at a level that most of us can’t reach. I had to turn around and go back upstairs, the impact of the moment was so intense for me. It’s funny but, only last week, one of my sisters mentioned, out of the blue, how she had sensed the same thing.

Even in these last week’s Michelle hung on tightly to her last ‘project’ – a trip to see the New England states decked out in all their natural autumn glory. She wanted to make it happen despite the obstacles or the increasing demands put on her body by the disease. In fact she talked to me on the phone about the possibilities of using the motorhome for this trip so she had better access to bed, bathroom and kitchen, and us to help relieve the pressure that would be on her husband, Jason, if he had to both care for her and get them from place to place. To my deepest regret, once we talked it through, the logistics of trying to get her up/down the stairs and in /out of the jeep, along with the limitations of driving a 40 foot motorhome in the places she wanted to visit, it was obvious that our rig would cause her more difficulties than benefit.

But, undeterred, she was making that trip and would figure out how to make it happen in a way that did not overwhelm her husband, Jason. In her sheer will to make things happen, and with a wonderful network of family support, she made her final ‘road trip’, her way.

That trip was Michelle’s final ‘project’, but I think her transition, her final journey was done her way as well. With no more options to explore from the medical community, and no more strength in her body to even walk, she passed away in her living room on a Saturday evening with her Mom and her ‘angel’ Jason, by her side. I can’t imagine she would have planned it any other way.

There is a phrase people use sometimes…’lost their battle with cancer’…. I can tell you of my niece, that phrase just didn’t fit. In the end, Michelle did not lose this battle, she just picked up her ball and went home.

As most of you are aware, I've recently left my very high-stress job of 32 years to pursue with my husband our dream of travelling this continent in our motorhome. Already last year when we were talking about this big major decision in our lives, to Michelle it was a 'no brainer'. We needed to 'Just Do It'!

If you look at the phrase on top of our blog you’ll see it ends with ‘and leave your lessons learned’.

Michelle in these last 5 years has taught me the value of so many things: assertiveness, transparency, family and ,maybe most important, how to grab hold of the precious moments of life that you’re given….how to live like you were dying.

Hugs, C


Anonymous said...

What a great tribute to your niece. I didn't know Michelle like you did, but talked and met with her on several occasions while at the hospital with our son Ethan. Our 4 1/2 year old lost his battle this past June to Neuroblastoma cancer. I completely understand what you and all of the family and friends of Michelle are going through. I cried as I drove past her Mom's house yesterday as I knew exactaly what they were going through. May GOD Bless all of you and be with you during this very difficult time.

Alicia Weiman

Cindy said...

Thanks so much, Alicia. I remember hearing about your son, Ethan. I'm sure the loss of a child is something only truly understood by those who have to faced such tragedy. We all appreciate you thoughts and prayers.

Hugs, C

Anonymous said...

Thanks for sharing your thoughts and experiences of your niece. It was a moving and touching post. I haven't read her journal, but will do so shortly.

She was so fortunate to have a friend like you by her side and to share her "journey".

Our thoughts and prayers are with you and your family as you experience the loss of a special spirit. May the memories help dull the pain.