Braille Monitor                                                    August/September 2009

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Dancing in the Rain

by Barbara Loos

Brad and Barbara LoosFrom the Editor: Barbara Loos is a longtime NFB leader who was unable to attend convention this year. In the following article she captures the frustration and sadness of missing this marvelous experience and shares with us a glimpse of the excitement and satisfactions of participating in it from afar. This is what she says:

To those who have never attended a national convention of the National Federation of the Blind, what follows may seem over the top. I hope you’ll read it anyway and come to Dallas next year to see what you think. To those who were in Detroit this year, I not only thank you for your awesome personal greeting from the floor, but also send kudos for all you did to move our cause forward.

Since 1975, when I attended my first national convention in Chicago, this is only the second one I have missed. The first was in 1981, when my daughter Marsha was born on July 2, just about the time we were to head for Baltimore. Back then, missing the convention meant altogether missing out in real time. Now things are different.

When I was diagnosed with cancer in September of 2007, one thing that was always on my radar screen when scheduling surgery and treatment was what would be happening at national convention time. I was fortunate in many ways. I was finished with treatments and able to go to Dallas in 2008. A wig and some numbness in fingers and toes reminded me of my recent past, but I was there cheering, resolving, marching, screening announcements, celebrating Braille with children at the Flea Market, working in the presidential suite, eating barbecue outdoors with friends, touching the universe with astronomers and youth—that is, immersing myself in the dynamic voice of our nation’s blind. I felt especially grateful for every moment and had no reason then to believe I wouldn’t continue to participate in the magic of the convention for many consecutive years to come.

Then the unthinkable happened. In October of 2008 my husband Brad, who had just received word in July that he had beaten the hepatitis C he had contracted from a blood transfusion in 1977, started having pain in his back. The ultimate diagnosis was cancer. Initially he wasn’t expected to need surgery, and his treatment schedule looked positive for our attending national convention. Then on January 16, as the cancer receded, it caused a rupture in his stomach that nearly killed him. Treatments were postponed for three months because of surgery and a subsequent hole in his stomach that needed time to heal.

Although he ultimately had his last chemotherapy infusion on June 30, two days before the Nebraska bus was to leave for Detroit, the period after, which we have come to call the “chemo wake”—a time during which blood counts go down to levels that severely compromise the immune system, making one susceptible to infection--would exactly coincide with the convention. It was really one of those good news-bad news deals. Having come through the scenario in which all of the doctors expected Brad to be dead, the fact that he was not only alive, but also receiving one fewer treatment than initially expected, was good news indeed. Considering the chemo wake, though, we had also to accept the bad news that we couldn’t attend the convention.

July 2, the day the Nebraska bus pulled out, I wore my red National Federation of the Blind of Nebraska polo shirt, as state president Amy Buresh had requested all riding the bus to do. After all, I would have been on that bus had cancer not interfered. I decided to wear a different Federation shirt every day of the convention as one way of connecting to it from home. I also determined to keep moping to a minimum. There were things here for me to celebrate. Brad was alive, live streaming of parts of the convention was to occur, I planned to see Marsha on her actual birthday for the first time in eleven years, and I hoped to see my son John too. (They went with me to convention every year throughout their childhoods, but they’re adults now, so I don’t generally see them during convention week.)

On July 3 I wore a green and white National Federation of the Blind of Nebraska Walk for Independence shirt and wished I could be two places at once. On the Fourth of July Brad and I wore his and hers shirts with a flag in the shape of our country on them which we had purchased for the occasion. Part of that day, which was unusually cool outside here, I wore a blue and gold Braille Readers Are Leaders sweatshirt over that one. That night, as fireworks boomed, screamed, hissed, and fizzed all around us, we sat on our deck and gladly received a call from my former mentee who has become a good friend, Hannah Lindner, and another college student she had invited to attend the convention with her. She said she would have called during the Nebraska caucus, but it was so loud in there that we wouldn’t have been able to hear one another. It was great to learn that Nebraska had some twenty-five first-time attendees; to know first-hand that we had eleven resolutions, none of which seemed to be controversial; and to hear that my absence had been explained during the committee’s roll call.

On July 5 I wore my blue and white Federation Family Forever T-shirt and tried, ultimately in vain, to get what was to have been the first live streaming of the convention, the meeting of the board of directors. As the time for it drew near, feeling both sad and foolish, believing that I should have done more ahead of time to see where the link should be, I called our Lincoln Chapter president, Shane Buresh, who allowed me to experience both the Pledge of Allegiance and the Federation Pledge before telling me that, if anything about streaming was mentioned, he would call me back. Before the day was out, I had called our Michigan Information Desk once and the presidential suite twice. In the end no one got to hear the board meeting live, but we were promised a link-up for the next day’s sessions.

While checking various Federation lists that day, I found the tag line that redirected my approach to experiencing the convention: “Life isn’t about waiting for the storm to pass…. It’s about learning to dance in the rain.” I certainly hadn’t been passively waiting for the storm to go by. But I had been wearing myself out fighting against it and gaining nothing.

My first dance through the rain was in the online exhibitors list, which I had been too upset to peruse earlier. I wished I could find out what kinds of magnets Idaho and New Jersey had. I was hungry for Michigan cinnamon almonds and knew that, although I didn’t find them on that list, Ohio would be selling M&M’s, and I would be buying. I wanted to see the West Virginia cookie sheets, buy some Michigan coffee for Brad, experience the “cherry Michigan products” mentioned, and check out the NOPBC table with its curly shoelaces, key chains, and Braille games, among other things. I wanted to get my hands on whatever new technology was around too. Although the “rain” kept me from actually touching products in the hall, the dance, complete with the longings it evoked, was good.

July 6, the birthday of both our founder Jacobus tenBroek and of one of our former Nebraska presidents, Marsha Bangert-Williamson, after whom my daughter is named, found me up early, trying to find the streaming link that was to have appeared the day before and wishing I were marching for independence along the riverfront in Detroit. I wore my light blue T-shirt from the 2007 inaugural march in Atlanta. Finally, about eight minutes before the opening gavel was to sound, I found the link! Brad and I pledged allegiance to our country and commitment to our Federation along with our colleagues. We felt pride in the veterans who answered the roll call of service and wished Brad could have been there to declare, “Brad Loos, Nebraska, United States Navy,” and receive his tactile flag with the Pledge of Allegiance in Braille. We wondered, at first, why President Maurer had skipped a state or two during the roll call of states, thinking they might be waiting to be called later for some reason. The truth? President Maurer didn’t have his alphabetical list. (When I tried to name the states off the top of my head, it took me a while to line them up alphabetically, and I wasn’t on the spot the way he was.) I liked the fact that he didn’t leave us guessing what had happened.

Just after Nebraska was called, we had to leave for an appointment. Thanks to our Victor Reader Stream, we were able to record the streaming for later listening. We weren’t sure if the link would be lost during the lunch break, but we knew it hadn’t been when, upon our return, Congressman Dingell was orating loud and clear in our living room.

At the close of the live afternoon session, we went slightly back in time and listened to what we had missed. Our spirits were soaring by the end of the presidential report, and we went to bed hopeful about reconnecting easily the following day, since we had received an email message offering a link that was supposed to allow more universal access to the live stream.
Whatever may have happened in general, we were never again able to receive the streaming on our laptop. Since I had assumed (always a risky business) that things would happen smoothly, I didn’t try to connect as far ahead of time as I had the day before. Consequently, we missed the beginning of the session. I found myself once again fighting against the storm and becoming frantic. That day I wore a T-shirt with a blind boy reading a Braille book on it. The shirt says “National Federation of the Blind” and “We read therefore we will be.” At that moment I wanted my “being” to include hearing the convention.

Reminding myself of the option to dance, it occurred to me that we might have an alternative dance partner to the computer. Although I had never before asked my Pac Mate Omni to do live streaming, I decided to attempt it that day. What a thrill it was to hear President Maurer’s voice come through! Although we had missed most of the financial report, we were there for the elections, speeches, and resolutions that rounded out that day’s business.

By then Brad was really feeling the effects of the chemo, so he was glad to be attending in a way that allowed him to lie down when necessary. Although he spent much of that day in bed, he did happen to be on the couch and awake when, during the Honor Roll Call of States, after Nebraska’s report, President Maurer asked the entire Convention assembled to say hello to each of us by name. What a pricelessly uplifting gift that was!

Shortly thereafter, our friend Mary Ellen Gabias called from Canada to say she had heard the greeting. She too was unable to attend this year and was listening by live streaming. Interestingly, our stream was running a minute or so ahead of hers. We talked some about how much has changed since we were last in Detroit in 1994, including the fact that back then my two children, Marsha and John, thirteen and ten, were entertaining her two oldest, Joanne and Jeffrey. Now Joanne cares for children in NFB Camp who are younger than she was then. Wow!

The first time we experienced 12:34:56 on 07/08/09, I was awake listening to Brad’s chemofied breathing, with its telltale congestion, and feeling both glad that we would be getting his counts checked later in the day and concerned about whether or not the streaming connection would be available early enough for us to record things while we were at doctors’ appointments, since we would need to leave before the session was to begin.

That day I wore a blue polo shirt with our former logo on it in gold. Although the streaming connection was there early, since it came on just for a moment and then went silent, we didn’t know if it would really work. When 12:34:56 07/08/09 PM occurred here, I was reveling in our somewhat distorted recording of Dr. Denise Robinson’s remarks. The distortion was caused by the fact that I hadn’t been able to set the volume correctly before we left. Nevertheless, we were grateful to have the chance to listen to some of what had gone on that morning between sessions and the rest before the banquet.

While we found that entire day’s agenda both impressive and inspiring, we were especially pleased to hear Gary Wunder’s Jacob Bolotin Award report, believing all recipients were certainly worthy. Afterward Sandy Halverson called to see if we had heard it. We told her that we had and said we were particularly gratified to know that the American Action Fund for Blind Children and Adults had received one. As its president I had felt a twinge of regret at not having been there when the announcement was made, but Sandy, our second vice president, represented the Fund well in her remarks accepting the plaque, the money, and the honor the award brings.

As NFB First Vice President Fred Schroeder gaveled the banquet to order, Brad, John, and I were gathered at our table for a feast of chili, raw veggies, and raspberries. There were no chocolate coins at our places, and our dress was casual, but we were glad to be attending. During the time when the streaming cut away for those in Detroit to eat, our table conversation was about past conventions and hope for our personal future and that of the Federation.

After filling our bodies, we filled our minds and spirits with one of the staples of Federation banquets--our president’s address. This one was, as always, thought-provoking. It reflected, as Ray Kurzweil later said, challenge, confidence, and courage. My initial response was to President Maurer’s courageous, confident challenge to everyone, blind and sighted alike, to understand that blind people are not broken sighted people. He articulated this very well. So does God in Exodus chapter 4 verse 11, when he asks Moses, who is attempting to opt out of responsibility, “Who hath made…the seeing, or the blind? Have not I the Lord?” There is no mention of having erred on God’s part, and there is no apology. All of us would do well to take this to heart and to live accordingly.

It was fitting, just after this speech, that we the blind honored a sighted couple, John and Barbara Cheadle, with our Jacobus tenBroek Award. They have separately and as a unit championed our cause. Since the time in the 1970s when we worked together here in Nebraska, we have been very close friends. After the banquet I called to express my congratulations. I received the wonderful bonus of conversation with each of their offspring as well.

When we first discussed the possibility of live streaming portions of our national convention, I wondered if it might cause blind people who were afraid to travel somewhere to opt out of attending, causing our in-person attendance to slip. I have now had the opportunity to rethink that narrow perspective. If someone is in that place, it’s possible that the streaming might be just the thing to inspire future attendance. In case anyone thinks it’s really a viable alternative to being there, I can say first-hand that it isn’t. It can’t show me what a flying pig is or what the smaller, lighter Perkins Brailler looks like. It can’t hug me and let me hug back or converse with me. It can’t allow me to compare canes, Braille books, or technology with a blind child. It doesn’t permit me to help someone find a meeting room; march for independence alongside my colleagues; update technology; or work on committees, in the exhibit hall, in the presidential suite, etc. In short, while it’s live, it’s not alive. It does, though, allow for real-time dancing in the rain, and for that both Brad and I are forever grateful to all who put forth the effort to make it happen this year.

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