Life is a Mystery

9 April 2015 . Comments Off on Open Government Data and the case of Wiener Linien

Open Government Data and the case of Wiener Linien

Those who know me know I have a special place in my heart for Vienna. For many years I visited my Grandmother there. I attended first grade at Volksschule Mannagettagasse in Grinzing. I brought my own children to Vienna many times to visit their Great-Grandmother. I love Vienna, and I especially love Wiener Linien, Vienna’s magnificent public transit system. So I was shocked to learn, as I prepared for another visit, that Wiener Linien is virtually invisible on today’s mobile devices. Digging into the problem revealed a fundamental misunderstanding, as I see it, in the meaning of “open data.” Wiener Linien has claimed to provide “open data” but in fact provides data that nearly nobody can properly use.

I want to use this post to record what I’ve learned and make a plea that Wiener Linien step up and actually provide the data the world really needs. As you see, my conclusion is that Wiener Linien should provide GTFS data. Why this is not being done is a long story, bear with me.

Politics and Transit

In 2007 and 2009 I visited Austria and I have distinct memories of using Google Maps to plan trips around Vienna. I found it vastly helpful to use Google Maps since the Wiener Linien website was less than simple at the time. That there was a time Wiener Linien was visible on Google Maps can also be seen on the Google Maps forum. In early 2010 people started to complain there that Vienna’s public transportation had disappeared from Google. A whole Google Transit Österreich group emerged on Facebook to try to find out what broke and how to fix it. It became a news story in Austria.

It seems that in 2010 Wiener Linien and ÖBB (the Austrian railway) decided to no longer share data with Google in the format that Google was able to use. They decided to work toward some more egalitarian open data feed that would serve all providers of transit information, not just Google.

At the time, the only standardized form of data for sharing transit timetables and routes was called the “Google Transit Feed Specification (GTFS).” When Google started incorporating transit routing into Google Maps in 2005, no other provider was trying to fill this niche. Google worked with the TriMet transit agency in Portland, which had developed the precursor to GTFS. Other agencies, including Vienna, eventually joined in. But some became shy of working so directly with one provider. Vienna became very shy, and pulled its data altogether in 2010.

Meanwhile, GTFS became the “General Transit Feed Specification” partly due to recognition on Google’s part that even they would be better off if other providers could use this data. While the GTFS specification is still hosted by Google, it is now used by many providers of transit data, not just by Google. And the response of public transit systems has been staggering. Hundreds of systems are now providing GTFS data, as documented at the GTFS Data Exchange.

In 2012 the lack was being noticed. Die Presse wrote about 500 cities having transit data averrable in Google Maps, but not Vienna. In Vienna, the ÖBB finally relented in 2013 and restored the GTFS feed for transit application providers. Yet this move also received criticism within Austria, one blogger lamenting the fact that ÖBB was only providing this information to Google and not as open data, and a spokesman for the Green Party complaining that this information was being made available exclusively to a mega-corporation and not openly.

This highlights the political line being drawn. There are those in Austria who feel that providing data in the format Google prefers, a format that has been adopted widely around the world, would be a political capitulation to a mega-corporation. Clearly, the Wiener Linien data is not being withheld for technical reasons, but for political reasons.

Technology and Transit

In fact, since 2010 Wiener Linien has done a remarkable job of inventing its own API to realtime and routing data. They have made a whole open data portal available with a terrific API and neat JSON responses. This is everything a web or mobile developer could want. Or is it?

I have signed up for access to this open data API and done some preliminary investigation. I was interested in seeing if I could use the Wiener Linien open data to produce the equivalent of a GTFS feed. I found the API clear and well designed, but I also found it utterly unique. It is like no other transit API, requiring a learning curve to figure out and wholly dependent on staff at Wiener Linien who could change the API or responses at any time.

I also learned that the API did not make schedule data available. While some schedule data is implicit in the routing service the API provides, the schedules themselves are not made available. This was confirmed for me in a tweet from Stefan Kriz, “Open-Data-Beauftragter” for Wiener Linien: “@efceleste @wienerlinien Fahrpläne bieten die WL nur via Routingschnittstelle an. Als Rohdaten gibt es diese nicht im open Data Portal.” In other words, while Wiener Linien makes transit schedules available to the public as PDF’s, they refuse to make this data available in the open data portal.

This means that it is impossible for me to create the equivalent of a GTFS feed. It certainly explains why despite Wiener Linien providing what it calls “open data,” Vienna stays invisible on transit applications of the web and mobile world.

There are a very few, Vienna-specific, mobile applications that provide some realtime information based on the API’s that Wiener Linien has provided. But the clear indication that Vienna’s data is unique and does not mix well with others is the fact that these apps all serve only Vienna. Vienna is not part of the world, it stands alone.

Mixing Politics and Technology

All this has made it much clearer to me that open data is about more than the data. Yes, Wiener Linien has made some data available openly. But this data is not in the format that most developers around the world have learned to use: GTFS. Because some in Austria still perceive GTFS as a “Google” format, they have missed that it is in fact now the most open and accessible format for developers of transit applications across the world. It is openly defined, and it serves hundreds of cities around the world. Paris, Munich, Prague all provide GTFS data.

While it is possible to provide GTFS data exclusively to Google, this is by no means required or desirable. GTFS data can be provided openly to the whole world, for all developers to use. In fact, this is the definition of open data: a shared format widely used around the world. Vienna is currently not providing this.

Furthermore, Wiener Linien is actively withholding the most fundamental data about its network that could be provided: schedules. Clearly Wiener Linien understands that this is fundemental public information, after all, it posts this to its own website in PDF form and includes these schedules on virtually every bus and tram stop throughout the city. Failing to provide an open data feed of this schedule information is an incredible disservice to Vienna.

If the Green Party and others who believe in open data in Austria truly mean what they say, then they should insist that Wiener Linien provide open schedule data immediately. If they understand the role of technology and care about their citizens and visiting tourists, then they should insist that this data be provided in GTFS format for all, not just for Google. These GTFS files could be posted on the existing open data portal for everyone in the world to use.

Until then, Vienna’s magnificent public transit system will remain invisible to the world.


28 April 2011 . Comments Off on Remembering: Release

Remembering: Release

I spent the whole afternoon of Wednesday, 28 April, with Oma, listening to her breath, helping her turn from side to side, watching trying to keep her weakly circulating blood from pooling on one side or the other. From time to time she would sip water set on her lip, but not much. She ate nothing. Alex and Anna checked in now and then. It was a very quiet day. As Anna and I helped Oma make one more turn, we realized this might be her last. Anna called Alex into the room. Oma lay naked and bruised as we held her hands and whispered our love to her, I felt a circle closing. She gazed at the woods outside the window one last time.

The dining room feels very empty now. As you heard from Mary, Oma left us this evening at 17:42.

Alex and I took our walk this morning, we got a wee bit lost at the end, and ended up in a place called “Am Himmel” which roughly translates into “in heaven.” We spent some time there looking at the “life trees” they have planted. Oma’s tree is an Ulme. Then we went to the church in Grinzing and lit a couple candles in front of the statue of Mary, asking for her mercy and help. Oma has been calling out to “mama” over the past few days, and once when Dagmar asked which mother, she said she was calling on the mother of God. So we did too.

Oma was still sleeping peacefully when we got home, though I do think she could hear some of what was going on around her. As the sun rose in America, a number of family members called and listened to Oma breathing and shared love and goodbyes with her. I sat with her all day, Alex spent much of the day with her too, but then went upstairs to do some work.

Anna and I would turn Oma every few hours, because her hands would start to go blue on one side or the other, her blood was not flowing very well. Her breathing, though, remained steady and deep. At about five thirty we decided it was time for another turn. I stood on the side of the bed facing the windows toward a lowering but still bright and high sun. Out of these windows we can see Cobenzl, though Oma’s eyes are not usually strong enough to see that far. She once told me she liked watching the fireworks on New Year’s from this window. As we turned her toward me, she took a deep breath and her eyes opened wide wide wide staring out the window at the light beyond. A brown foam rose to her lips, I began to wash it off as her breathing changed, slowed, and got very bubbly. She finished staring out the window and closed her eyes.

I noticed her lips turning blue. Anna and I then realized what was happening and quickly called Alex to rejoin us. Anna and I felt her pulse on wrist an neck as Alex held her hand. I could not feel a pulse in her neck but kept talking anyway, letting her know everything was OK, that we would miss her terribly, but it was OK to go, she could have some peace, everything was OK. We continued to wet and wipe her lips as she turned a bit bluer, then we became sure she was gone. 17:42.

Her eyes and mouth were already closed, she looked very relaxed and peaceful. We straightened her out, had a few awkward moments cleaning her off one last time, and called the doctor and the city.

Heinz came to see her and help us with the formalities of getting her picked up by the city’s equivalent of a funeral home. I will go there tomorrow to get started on next steps. Sigrun also called us just in time to hurry to us and see her body at home in peace before she was picked up. Her body left the house dressed simply, with her rosary, and with a small rosary book that Dagmar had given her. Anna lit a candle in the dining room and Oma’s room of the last few weeks, which is burning here next to Alex as I write.

We hugged, we cried, we miss her so already. I’m sure I will see many of you here in Vienna soon, and we will share details about what comes next as we have them.

A few weeks later I found this video of Oma playing with Alex fourteen Aprils earlier. This is my Oma, who I miss very much.

28 April 2011 . Comments Off on Remembering: The Walk

Remembering: The Walk

Alex and I were up early and Oma was still, blessedly, sleeping. After sending an update to the family, I wanted to get out of the house, into the woods. Anna said she had everything under control and gave us leave to head out. America would not wake up for hours yet, the day was amazing, Alex and I hit the road. We took the bus up to Cobenzl and walked into the woods behind.

Cobenzl behind Cobenzl up the incline Alex up through the woods Cobenzl treetops
cross at the crossing

The Kreuzung is where a few of the paths around Cobenzl cross, and there someone raised a cross like those you often find in the woods around Vienna. Today it bore a little sign: “I don’t know where God is driving me, but I know he drives me.” We walked on toward Jaegerwiese.

tall trees red white red Alex on the path path to Jaegerwiese

As I walked the path I had an almost physical sensation of someone else watching with my eyes. I became conscious that this walk was not just for Alex and I, but for Oma herself. It was her last walk in the woods. Jaegerwiese was almost empty this early in the day, and a weekday no less. It was contemplative, with a pony eating under a flowing tree of spring.

Stadtwanderweg 2 Jaegerwiese Jaegerwiese pony

For no particular reason, as Alex and I headed over Hermanskogel and down the other side, we began talking of plans for the family who would join us when Oma died. It seemed possible that Oma might die soon, and the walk became a practice of a walk we might take with brothers and sisters to make sure they saw some of Oma’s woods while they were in Vienna. We got a bit lost, finding a babbling spring brook and a poisonous lizard as we wandered on.

brook Alex and Eric Eric lizard

We were both a bit amazed that as we recovered our bearings we found ourselves at the Celtic tree circle near Cobenzl, on a hilltop called “Am Himmel.” Could we have ended up at a more aptly named hill, “in heaven.” We found Oma’s birth-tree, the elm, in the circle. As we returned to Cobenzl we passed a field of the most amazing yellow dandelion-like flowers covering a rise, right up into the clouds. Down in Grinzing again, we stopped in the parish church to pray to Mary, the mother of God, that Oma might find peace and we might find strength.

elm flowers to the sky Mutter Gottes

We’d been walking for hours and hours. When we got home Oma was as we’d left her with Anna. I sat by her side. As America awoke, family started calling. For the most part we spoke in whispers. I showed them Oma sleeping, they listened to her breathing. Together, we kept vigil.

28 April 2011 . Comments Off on Remembering: Apfel Suppe

Remembering: Apfel Suppe

The morning of Wednesday, April 28, one year ago:

Oma’s condition has been worsening, though growing more calm, since Monday. We are now firmly on a palliative course, with a morphine patch in place, and only pain medications being administered. She is more or less out of touch, when she does speak, it is mostly in tongues. We’ve had Dagmar online and some visitors like Sigrun, Guenther, and Rosewita trying to help us translate with little success. Oma was not even interested in the very cute cat book that Rosewita brought for her.

Anna and I did have one breakthrough last night, we realized Oma was saying “apfel suppe” and I finally figured out that meant “apfel saft”. We gave her some multivitamin juice and she ate half an apple (grated)! I’ll be buying apple juice this morning for Oma.

Not that it will help much. This morning she spit up the apples and is deep asleep. She has not kept any food down for a couple days and she has been drinking very little. Her breath is sounding bubbly, though deep.

There is a growing consensus among some that Oma won’t last out the week. I would still be personally surprised if she is not alive when I leave next week, mostly because Oma has surprised me so many times already. But even so, I went to Utzi and Opa’s grave with Alex yesterday and asked them to come visiting and help Oma with her journey. Tante Trude sent a priest who administered last rights with Dagmar on the videophone. Anna is picking out clothes for Oma to wear when she dies. It feels like the last days are upon us. No predictions or guarantees, of course.

Alex and I will go for a long walk in the woods this morning. I’m going to go say goodbye to Cobenzl and the Kreuzung and Jagerwiesse and Hermanskogel for Oma. All places she has not been to in years, but which I remember visiting as a little boy with her. To these places I am sure she won’t return except in sprit, or perhaps in the form of a small grey fox like the one we saw in her garden last week, coming by, perhaps, to welcome her to the side of the angels.

0428 flowersoverhill

27 April 2011 . Comments Off on Remembering: Utzi, Opa, and Trude

Remembering: Utzi, Opa, and Trude

Today was Tuesday, April 27. Oma was mostly sleeping, wearing a morphine patch, and we were not even going to try to get her to exercise or get in the wheelchair. That seemed past. Dagmar suggested I get in touch with Oma’s dear friend, Tante Trude. Trude is also a great grandmother, from Oma’s generation, grew up in Krems like Oma, and now lives only a few blocks away. Trude had visited on a glorious Sunday just two weeks or so earlier and seen Oma at her best.

Dagmar knew Trude was quite active in the local parish and thought I should ask her to arrange for a priest to come see Oma. Oma had hardly gone to church since losing her daughter Utzi in a car accident while Opa was driving. Utzi had lingered for days in the hospital before dying, and Oma was terribly offended by the piss-poor job the parish did attending to her and her funeral. Still, Dagmar thought Oma would appreciate seeing a priest, and Trude could arrange that.

I told Dagmar I was very uncomfortable with the notion of asking Trude to do this. I hardly ever went visiting in Vienna, I was a loner. I’d hang out with Oma, explore the city, walk in the woods, and then return to Oma. This was well outside my comfort zone.

Alex and I did try to get out every day, and today was beautiful. I didn’t want to be gone for too long with Oma in this condition, so we decided to just go to the cemetery to visit Utzi and Opa. Friedhof Grinzing was just up the hill opposite Huschkagasse, up An den Langen Lussen. I always visited the cemetery at least once on each trip to Vienna. Utzi had been buried there all my life and I thought of her as a kind of patron saint, watching over my family. I always liked paying my respects, cleaning the grave a bit, lighting a candle. Much more recently Opa had joined his daughter in the grave, and I knew Oma expected to be laid to rest here too. I asked Utzi and Opa to help Oma. I told them she was afraid, that she needed their guidance. They told me to return home by way of Tante Trude.

Trude’s apartment was only a couple blocks from the cemetery, so Alex and I stopped there on the way back to Huschkagasse. We had not called ahead, but Trude was there. She didn’t get out much either and loved the intrusion in her day. She welcomed Alex and I to her back porch, got us something to drink, and asked us how Oma was doing. She was very sad to hear how much Oma had deteriorated since her visit, but she did not seem too surprised by it. She asked if it was time to arrange for a priest to visit, and I told her yes, I thought it was. She promised to see to it.

Alex and I returned home where Oma was still resting. But as I sat with her I saw she was not really asleep, so I talked with her a bit. I told her about our walk, said hello for Trude, and apologized for all that I had put her through the past weeks. The room she lay in was full of windows and spring sunlight streamed in as she roused herself to hold me tight. She gave me a proper hug, and though she didn’t say a word I felt her love stream into me like the spring sun and I felt her forgiveness for all, her joy at simply having me here beside her. I sensed that her fear was receding. Whether that was the morphine or the way being prepared on the other side hardly mattered. This was a hug I would remember always, it was a hug that I needed and that helps me live with what was and what was to come.

0427 utziopa

26 April 2011 . Comments Off on Remembering: The Battle

Remembering: The Battle

While Alex and I were in Vienna, my mother, Dagmar, had gone home to the US. Still, we had WiFi and Skype at Oma’s house and so we often talked with Dagmar, usually every day. She was very aware that the situation had turned for the worse and had prepared for that even before we got to Vienna in April. Dagmar had not only arranged for Anna to be present from Curavita, but also for Caritas to provide its Mobiles Hospiz service. Over the past weekend a year ago today we had only been able to get the mobile hospice doctor to visit, and she had suggested a significant change in the course of treatment.

Later on April 26 the “house doctor,” Dr. B from down the street, finally came for a visit. I made sure Dagmar was available on Skype as he reviewed Oma’s condition and considered the advice of the hospice doctor. Dr. B was well aware that we had brought Oma home with an understanding that if things took a turn for the worse she wanted to stay at home to die, not return for further interventions at the hospital. Yet now, confronting what looked like the failure of multiple systems for Oma, he advised us to get her to a hospital, quickly. Yes, he acknowledged, he understood that we wanted only palliative care. But he insisted that our approach was immoral. He suggested we take Oma to Switzerland if we wanted to carry on with this course, there assisted suicide was legal.

I was astounded, and very happy to have my mother, Oma’s daughter, on the Skype with me. He had to look her in the eye to say these things. I was so proud of Dagmar for sticking to what I knew Oma wanted. She’d never wanted to live in a nursing home much less die in a hospital. Yet I found it nearly impossible to hold to the palliative course, I wanted to believe she would get better, I wanted my life in Vienna to never end, and Oma was my life in Vienna. I was afraid, and I know Dagmar was as well. But she was also strong, stuck to her guns, and insisted that we wanted only palliative care for Oma.

Dr. B was very frustrated by the resistance. He eventually stormed out without even renewing the pain medication prescriptions we needed or reviewing the drugs the hospice doctor had recommended we drop. But before he left he agreed that if Dr. D concurred with us on the palliative course, he would accept it.

Dr. D was Oma’s friend and a specialist at the private hospital where Oma had been cared for before coming home. He had been the one to call Dagmar in March with word that Oma would not likely last much longer. We had not seen much of him, though, in the past couple weeks, it was almost as though he had already said his goodbyes. We’d also called him over the weekend, but he had not been able to get to the house.

Later on April 26, though, Dr. D did make it by to see Oma. He was shocked by what he found, “this is inhuman,” he exclaimed! He was surprised we had been pushing IV liquids and he quickly approved all the changes the hospice doctor had recommended. He was in the house for barely ten minutes, but he set the course and gave us the bulwark we needed to deal with Dr. B. By the end of the day we all realized that Oma was lying in her deathbed, it was only a matter of time.

0426 charts

26 April 2011 . Comments Off on Remembering: The Garden

Remembering: The Garden

Stubbornly I kept trying the wheelchair. On Sunday, April 25, we made our last attempt. I took Oma into her garden for a few minutes. She just could not appreciate it. I have a video of one of our forays. I’m not sure why I made it except perhaps to remind me of how simultaneously beautiful and awful this time was. It was such a privilege to be able to sit with Oma in this time. But so hard to bear the suffering. Looking at these images now, it is hard to imagine we believed she had any interest in recovery.

0425 covered

I warn you, watching this video is very difficult. It does, though, give you a sense that spring had sprung, that Alex and Anna and I were present and attentive, but that even so Oma was fading away. “Bitte ins Bett,” please, in bed.

This sunday the itching continued to be terrible for Oma. We tried to reach Dr. B or Dr. D but had no luck getting either to the house. We finally resorted to calling the hospice doctor. Dagmar had arranged to have Oma followed by the “mobile hospice” in Vienna, and their doctors, a rotating set of six or seven, were always on call. This Sunday the mobile hospice doctor came and reviewed all the medications that Oma was on. She thought that the medications indicated a kind of schizophrenic approach on our part. On the one hand we had brought Oma home saying that she was prepared to die at home and a palliative approach was our goal, on the other hand the medications indicated an ongoing battle toward a recovery. As we listened to the hospice doctor we realized that we had to come to peace with a choice here, that Oma had to come to peace with a choice.

Somewhere in these days I sat by Oma’s side and tried to have a frank talk with her. I pointed out that when she asked doctors for relief, they would do what they could to keep her going and that would involve more medicine, more infusions, possibly even a return to the hospital. I told her that if she really wanted peace, she had to say no to this, it was OK for her to let go. We could give her medication for the pain, but we didn’t have to do all the rest.

Oma seemed frightened of something. At night I would sometimes come down to her bed and find her mumbling prayers, I could make out “Mutter Gottes” so maybe these were Hail Marys (“Mother of God”). I didn’t know what scared her, but I know her life had plenty of blemishes, and perhaps she was afraid of what waited her on the other side of death. Whatever it was, I got the clear impression she was fighting it, she was afraid of it. My mantra became, “it is OK, we will be OK, Oma, everything is good” to try to help calm her.

The hospice doctor removed Oma’s catheter, noting that it just made us obsess about things we had no control over. Oma had been asking for the catheter to be removed for weeks, was it really so simple? She told Anna that we could stop with the constant measurement of vitals (blood pressure, pulse, blood sugar) which Anna had been recording so carefully. I asked her to mark the medications she suggested we drop so I could discuss that with Dr. B, which she did. And she started Oma on morphine and left us with a small supply to continue. She brought peace to the house and relief to Oma, within hours the mood had shifted, much of the tension began to leave us.

The next day, a year ago today, on April 26, I wrote this note to family. I think it conveys this stage of our journey well, so I will let it stand on its own:

Needless to say, the roller coaster continues with Oma. This week has seen some highs, like a few trips in the wheelchair, including one visit to the garden for almost an hour, and lows, like a horrible battle against itching that was driving Oma mad. My very description of these events as highs or lows, though, betrays a perspective that may not be at all valid from Oma’s point of view. It is all but impossible to understand the world as she sees it, but I am pretty sure she would describe the week quite differently.

Take the wheelchair… The doctors D and B and the physical therapist all stress the importance of exercise and getting out of bed. Her condition can’t improve without this work. Getting her into the wheelchair was, from this perspective, a victory. But Oma never wanted to do this. She hated the idea from the get-go. The whole time she was in the wheelchair she begged to be put back in bed. After a few days she accepted the inevitability of it, we insisted after all, and even ate breakfast with us in the wheelchair at the table. But when I’d take her to the garden she would complain that she couldn’t see anything properly or hear the birds. She did not seem to enjoy the sunlight, the shade, the breeze, or her beautiful garden. She would moan and when words came out they would be simply, “please put me back in bed.” our victory was her defeat.

This confused me, because when I asked her what she wanted for her future she would tell me that she wanted to get out of the bed. When I explain that out of bed means exercise today, wheelchair today, some hard work and, yes, some pain so that her muscles become strong again, she says, “no, not today, tomorrow, today I want peace.” So, really, what does she want?

The itching that started on Friday was fierce. It started on the soles of her feet and spread up her legs and to her bottom. We tried creams, gentle scratching, water, ice, everything we could think of to help her though the itching. Really, none of this helped much. By Saturday she was in such agony over the itching that she insisted we call the doctor, which made sense. She spoke herself with Dr. D on the phone, explaining how terrible this was and that she needed his visit. He told us to give her three more doses of Lasix which would help bring water out of her system, and said he would visit that night or at latest the next morning. We have not heard from him since. After a terrible Saturday night, we called the hospice doctor on Sunday. She came by twice. By the second visit it was clear that we had to do something more drastic if Oma was to have peace. The doctor gave Oma a shot of morphine. We also removed the catheter, something Oma had been asking for for quite a while. Oma soon fell into a deep sleep, breathing and snoring like I have not heard in a long time.

This felt like a failure to me, the morphine made Oma disappear a bit. She does not seem to recognize me as well, she certainly cannot speak as well. To some extent, we’ve lost her in this condition. But I imagine she might feel quite differently about this. All she has asked for for weeks is some peace. She wants us to leave her be, certainly in this condition physical exercises are the furthest thing from our mind. She has some peace.

So my view of the world and the week is quite different from Oma’s, I imagine. When friends call the house and ask “how is she doing” I hardly know what to say. I’m not at all sure what direction is up any longer. This morning, as the morphine began to wear off and the other pain drops had yet to take hold, Oma was again very agitated and clearly in pain. This time, though, she could not really communicate very clearly about the situation, her speech was still hindered by the morphine, I suppose. I ended up for the first time really praying over her. I prayed out loud, but not loud enough for her really to hear. I prayed to Utzi (Dagmar’s sister) that she help her mother let go and find a way to rest, to Uroma (Oma’s mother) that she welcome her daughter home, and to the mother of God that she grant Oma peace. As I mumbled these prayers over Oma she stilled and fell deeply asleep. It is hard for me to pray, since I am not even sure in what I believe, but I do know that I believe Utzi helps me. And I do think Oma believes in the power of prayer. Maybe Oma heard me, maybe Utzi heard me, maybe God had mercy… In any case, maybe I should pray some more!

So now we see if we can bring the other doctors really on board with the notion of purely palliative care for Oma. The house doctor is understandably reluctant about the idea. He wants to watch here blood values and adjust her medications to improve the chemistry as much as possible. I think we need to let go of as much of that as possible. The hospice doctor was wonderful, I hope we can leave Oma more in these caring hands, hands that think only of her wishes and comfort, hands that do not feel compelled to apply all human wisdom to the task of prolonging life. After all, Oma has a family on both sides of this border, maybe they are as eager to welcome her as we are reluctant to let her go.

0425 bitte

23 April 2011 . Comments Off on Remembering: The Woods

Remembering: The Woods

When I was six I spent a year in Austria with Oma and Opa. I returned often for weeks in the summer time. I have distant memories of walking in the woods with Oma as a young boy. Oma would take me mushroom hunting, digging around near the base of the trees to find the small mushrooms from which she’d make a delicious soup.

But as I grew up and Oma stopped walking in the woods, Vienna became more about the city for me, less about the woods. As I brought my own little family back to Austria we would explore the city and go out to other parts of Austria for the country. We might take the bus up to Kahlenberg, but the paths and meadows of the Vienna woods were more or less lost to me.

0423 vinesandvienna
One of the last things I remember doing with my grandfather was going for a walk. Opa, it turns out, used to walk quite a bit. One day he asked me to come along. I don’t remember him saying much, but he walked like he was on a mission. His hands were folded behind his back as he took sturdy strides into the hills around Grinzing. I was lost quickly enough and just followed along. I remember climbing up the hills into the vineyards. At times we walked right though the vineyards, not even on any path. It was a long walk, I was surprised Opa had it in him.

0423 leopoldsberg 0423 kahlenberg
Many years later as an angry father in a pique of temper with my family I escaped into the Vienna afternoon and decided to just walk. It was dreary and gray and I carried an umbrella. Soon it began to rain, I just kept walking. I tried to let Opa, long gone by this time, guide me. With a vague memory of our one walk together I stormed into the vineyards and just kept going. As I walked a stiff fog drifted over me, obscuring anything more than a few feet around me. I found a road and just followed it upward. Eventually, in the mists above me I saw the abandoned hotel at Kahlenberg looming over me. I just kept going, I had a lot of self loathing to burn off. I walked from Kahlenberg to Leopoldsberg and then down what felt like a thousand stairs to the small village below. From there I found the Donau, walked along its banks to Nussdorf, and then eventually back to Grinzing. By the time I got home four hours had passed, darkness had fallen, the rain had stopped, my temper had been tamed, and I was in love with walking in the hills. I thanked Opa for showing me the way.

0423 alexanderic 0423 alexwalks
Ever since, walking in the woods and vineyards around Grinzing became a balm and joy of being in Vienna. I took Mary, Alex, and Nathaniel into the hills. We learned how to walk up to Cobenzl and Kahlenberg, we learned our way around the woods. Alex particularly enjoyed exploring with me. Various meadows and twists in the woods would rise out of my memory like Kahlenberg through the rainy mists. I knew these places, these were my places, these were Oma’s places. She no longer walked these paths, but I would always return and describe what we’d seen and she always knew where we’d been.

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These last days with Oma were incredibly trying. A year ago today, things took a turn for the worse. An itching started. Oma complained and asked us to scratch. First it was scratching her feet, then her legs or back. The itching was relentless. The nights were restless as Oma seemed to get no sleep at all and called for Anna and I all night long. The house I’d grown up in had become something else, filled with an expectant quite or a terrible pain. It was a place of suffering. The woods became a refuge, and the stories I brought back of what we’d seen walking always seemed to help Oma also find a moment of peace. I think she was happy that not every minute of our day was spent tending her, that we still found a way to enjoy the spring that was erupting all around us.

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Oma joined us for breakfast today. We got her into the wheelchair and rolled her to the table in the living room. But she couldn’t stand it. She was in pain, which was to be expected since she spent so much of her time in bed. She just asked to go back. For fifteen minutes here lament was “Bitte ins Bett.” Please, back to bed. Breakfast had some of the trappings of the life we’d known with Oma, we gave her the newspaper, her boiled egg, her coffee, her pills. But she didn’t touch the paper, and frowned as she ate. She was mad at us for putting her through this. It would be the last time I sat at the table with her.

Did she notice the spring sun coming through her grand living room windows? Could she appreciate the warmth growing on the breeze? All I heard was her pain and frustration. When Alex and I walked in the woods I tried to carry some piece of Oma with me, to help her escape a bit. I know it was an escape for me.

0423 kandl

21 April 2011 . Comments Off on Remembering: Lass mich in Ruhe!

Remembering: Lass mich in Ruhe!

I remember a year ago today with pain and wonder. I was beginning to really push Oma. We now had the pieces for her recovery assembled. Her friends had visited her and encouraged her. Anna was caring for her. Her doctors were attending her and adding fluids to the mix with an infusion. The physical therapist had given us exercises. The wheelchair was ready. We were cooking for her and sitting with her and praying for her. We just needed her to get on board with the notion that she would get out of bed.

Oma was very tired by this time of day because she was staying awake much of the night. She would ring for Anna or call out for me through the night. We tried to not attend to her at night to encourage her to sleep. Sometimes I’d just sit with her silently. Sometimes I wouldn’t do that much. But it was hard to here the calls through the night, and it was even more frustrating that then she would not have the energy to work on her recovery in the daytime. She asked for peace in the daytime, we would pray for peace at night.

When I asked Oma if she wanted to get better, she would tell me that, of course, yes, she did. Tomorrow. Not today. Today she wanted peace. I focussed on tomorrow, how would we reach that tomorrow without taking some action today? I pressed her to exercise and especially to get in the wheelchair. She simply had to sit up if she was to improve. In retrospect, I think I lost track of today. Oma told me she wanted to get out of bed tomorrow, but today she wanted peace. Why could I not give her that peace today, and simply let tomorrow take care of itself when we got there?

One of the great lessons of my time with Oma these last weeks was to learn to focus on the moment. Unfortunately I have not yet mastered this and I certainly was not practicing it with her. A year ago today I captured Oma’s frustration and anguish in pictures and sound. I share them here as a reminder, we don’t have to do this. It was in my power to give Oma exactly what she wanted, I refused. Did I win? No, Oma got what she wanted anyway. I could have been a lot more graceful in granting her that wish, though.

Here is an MP3 recording and translated transcript of a conversation one year ago today.


Eric: OK, so you’ll get out of bed in the morning? Say that again. We have to exercise more today, but tomorrow…

Oma: Today is peace.

E: How often will we get in the wheelchair tomorrow?

O: Two times.

E: And how many times will we do the exercises today? We must exercise a little more today.

O: No more.

E: No…

O: Eric, please leave me in peace. Please.

E: Before lunch we will exercise more.

O: No.

E: Yes, sure. And then I’ll leave you in peace. (laughs)

O: (voice raising) Please, Eric, (now crying out, waving her arms in prayer) please, Eric, leave me in peace!

(long silence)

E: That’s good, at least you exercised your arms a bit when you prayed like that.

O: Yea.

E: Yea. That was good. You should also pray with your feet. So tomorrow we will get in the wheelchair twice. How many times will we do the exercises, the practice from the physical therapist? Four times?

O: No.

E: Then how many times? We should do this five times each day, he said. Five times a day. This is your pain medication, the exercise. You said no to four times. So how many? Should we do this five times tomorrow.

O: No!

E: Then how many times will we do this tomorrow? The exercise. (laughs) So tell me.

O: (whispers) Please, leave me in peace.

E: Hey, you only have to tell me, promise, how many times will we do this…

O: Tomorrow, two times.

E: Two times in the wheelchair. But we also have to do the exercises.

O: Yes, the exercises we will do one time.

E: No. That’s not enough, Oma. That is definitely not enough, he said five times each day.

O: (quietly) Please.

E: So you… (pauses) …it has to be more than once.

O: (weakly) No.

E: Yes, it must.

O: (very weakly) Please, can you leave me in peace.

E: Not yet, because you said one time and that’s not enough, and you know that. And it is daytime, you don’t need peace in the day. Once you get out of bed you can go in another room, close the door, and then I would not be able to get in. (sighs and pauses) I am happy that you at least don’t have any pain right now. That’s good. But look, later it will hurt again, and then you will know that the exercises were not enough today.

O: (more strongly) Please, Eric, leave me now in peace.

When I next have a chance to care for someone I love I hope I look at them, listen to them. There are times when I will push just as hard as I did with Oma, but just maybe I will also recognize the times when the person I love is on a different path from mine, and have the grace to accompany them rather than trying to yank them back to my destination.

Ruhe Too

19 April 2011 . Comments Off on Remembering: Ins and Outs

Remembering: Ins and Outs

One of the pleasures of these weeks with Oma was that, to the degree she ate anything, she liked eating the food I prepared for her. For years I had learned how to cook at her elbow. Oma had a very direct method of cooking, just tossing meat on the counter or veggies in the water, never really measuring, never fretting about cleanliness. And she would use everything, then throw whatever was left “out for the birds.”


The “birds” were huge crows, maybe ravens, that haunted the top of Husckagasse with an eye on Oma’s front yard. We could throw almost anything into the front yard, and within minutes it would be gone. Bones, meat, bread, leftovers of every sort would all vanish. If you paused in the living room and watched, you’d see three or four of these enormous black guardians descend, seek out the offerings, and fly away, beaks full. It didn’t take long. I taught Anna to trust in the birds, and just dispose of extras in the front yard. Only vegetables would ever be left lying around the next day, the birds were clearly carnivores.



Anyway, the joy for me was that I was forced to cook on my own, but with Oma only a room away. The dining room had been transformed into her bedroom, and it was connected to the kitchen by a small pass-through from the kitchen counter to the dining room counter. I could watch Oma while I cooked, pass the food into her room. Alex and I bought a small folding table at Ikea that we could set up to eat by the side of her bed, sharing mealtime. In Austria the main meal is in the middle of the day, when Americans would have lunch. We would spend that time with Oma. I learned how to cook fried chicken like schnitzel, which Oma particularly liked. Of course, her dentures were not fitting properly any longer, so chewing on bones, one of her favorite activities, was limited to weakly sucking on them. She didn’t eat much, but we could usually get her to eat something.

Still, each day was a struggle. As my message from April 19 describes, Oma was having a lot of trouble regulating both her ins and outs:

This week has been all about the ins and outs. Oma’s outs have been a problem, first coming way to fast, requiring five or six diaper changes a day, and then, after some immodium, coming way too slow and leaving Oma feeling constipated for three days. This is one roller coaster I’d rather not be on! I kind of enjoy changing baby diapers, they are often so smiley and playful in the process. Oma is not nearly so cheery about having come full circle.

The ins have also become an issue. While Oma has been drinking quite well (over one and a half liters per day) her blood work was still disturbing enough that her “house doctor” [Dr. B] wanted to start an IV. in fact, he wanted to ship her back to the hospital, but after a conversation with Dagmar and Dr. D he settled down to a handful of new prescriptions and the IV of saline per day. Unfortunately he placed the line in at the inside of Oma’s elbow, a location that sees quite a bit of motion, and she already displaced it today, after only three days.


Our goal, of course, was to get Oma out of bed. She would agree with that in principle, and had said as much to all her friends earlier in the week, but in practice she was much more reluctant. Alex and I turned our out-of-house excursions into forays into the Austrian insurance system, seeking and getting approvals for equipment like a wheelchair through what seemed like a maze of bureaucratic offices around Vienna. We discovered a host of new strassenbahn lines and pushed the boundaries of my German in the process. After weeks of hoops, we finally got the wheelchair home:


We also got in and (much more importantly) out of bed today. Alex and I hunted down the wheelchair (with a side trip to the insurance company for the right approval, of course) and brought it home on the strassenbahn this morning. Lucky for us, when we got home the physical therapist was there (for the first time since Oma got home) and helped us convince Oma to try out the chair. Even though Oma shouted “no” and “I can’t” and “not today, tomorrow” at us, she could and she did. Her trip to the front door to look at the garden did not last very long, but we were able to give her at least a brief glimpse at her sunny garden. Then back to bed.


One day at a time!

The physical therapist stressed the importance of activity for Oma, who had now been in bed for well over eight weeks. He gave us exercises for her to work on in bed, and also told us to get her sitting up in the chair at least twice a day. I had no idea how difficult this simple charge would be to carry out.


Eric Celeste / Saint Paul, Minnesota / 651.323.2009 /