2. WHEELS. This requirement gave me the least problem. It was pretty straight-forward. I googled "accessible van rentals." I chose a couple of sites, just to check the rates and how they operated. You get to reserve on their online form and they get back to you. I chose one of them (wheeler's) because it offered a cheaper rate: $110/day. I got to talk to their CA reservation office and all documents I needed were emailed to me. I faxed back the documents which included the standard reservation form, a copy of my driver license, and credit card authorization. All in all, I paid $691 for 5 days of use.
Recognize that the accessible van rental market is merely a portion of the national fleets such as Avis. This means that a plethora of options is not a reality. I asked for GPS, but the one I got did not have it. It had the my minimum requirements but I didn't like the lap restraint. The vehicle had a four point restraint but the lap restraint did not have a strap across the chest. Everything else - ramp deployment, "kneeling" function - was standard.
Pick-up directions and drop-off at the airport. The directions are included in the documents emailed to me so I left Britt with Tom and our party to pick up the van. I got into the shuttle that brought me to the parking area. This is a communal pick-up place for other rentals and businesses needing a place to return and pick-up and share personnel that did minimal documentation input into their computer. I checked the ramp deployment and restraints, swept a cursory look at the condition of the van, called in the info they needed (fuel level, mileage, license number), and took off back to the baggage claim area.
Drop-off is even easier (or so I thought). After filling up the tank, I drove back to where I picked up the van at the appointed time and gave the keys to a gentleman who recognized the van and waved me to a line of vehicles being cleaned by another. He got into the van and offered Tom and me a ride back to the airport but we declined as the shuttle was already leaving. In hindsight, I wish I didn't give the van away without checking the man's credentials. I didn't for two reasons: I was late 10 minutes in delivering the vehicle (I got lost: this parking place had two locations. Of course, I went to the wrong one, so Tom had to get out and ask directions to the right one.) ; and secondly, because I was late, a gentleman had called my cell to ask where I was. That's why I was confident that the gentleman who looked like he was expecting me got the van. Now that I am little bit more akamai, I would suggest making sure the person you are returning the van to is the right one. The pick-up/drop-off transaction is so informally conducted, it is open to ambush. To date, I have received no unexpected correspondence, so I think I am in the clear. Hopefully, dear God.
To be continued.....
Saturday, May 30, 2009
Wednesday, May 27, 2009
Cont'd: Making the Impossible Possible...
B. The Sine qua non - airplane, wheels, housing.
1. AIRPLANE: Economy or First class? was NOT a question. The fares for Britt, me and his student assistant were already more than a thousand bucks. No way would I pay more. I was sort of hoping that Delta (the cheapest online that I could buy) would be as sweet as JAL was the time we went to Japan: no questions asked, they upgraded me and Britt to business class. But the Delta flights both ways were fully booked, so that was that. We were a large party of seven traveling: Britt; myself; a student assistant who will help mainly with lip-reading; one of two graduate students who wanted to meet the demi-gods of ethnomethodology that Britt was going to see; and my two tweenaged nieces.
Know way ahead how the carrier handles people with special travel needs. Check the carrier website. I first pored through Delta's on disabled travelers. Airlines that outsource reservation function to call centers should rethink this strategy. I am not being discriminatory but there is something about the resulting frustration when the common language, English, is not spoken clearly. It was embarrassing how many times I had to have the guy on the other end to repeat himself. And he was sooooo sweet, too. He would put me on hold to refer to his supervisor. With the music on, you know he is still online but he would come back to me every 2-3 minutes and ask if I could hold for 2-3 minutes more. I call that consideration but I did need somebody whom I could understand without several repeats.
Unquestionably, transporting a man in a wheelchair whose only gross movement involved a shaking of the head is a special need. I needed the airline to understand that Britt needed to be in his own wheelchair all the way to the boarding area; that although I had others traveling with us, we were not in a position to transfer him to his airplane seat without assistance, mechanical or human; that Britt needed special handling with some quick understanding of his disabilities and respectful of his condition as well as his dignity. I described to several reservation agents what Britt's situation was. I even emailed them directly. I wanted them to know that "this man is long, not heavy. But he is dead weight - he cannot help at all." I had seen the dreadful aisle chair - a device that is nothing more than a slightly reconfigured hand cart- that they said would be used to take him from the outside of the plane to his seat. If airline carriers are serious in assisting disabled passengers, the aisle chair is one of the things that need to be improved to provide safety as well as allow dignified handling of the disabled.
To address this concern, I tried to convince them that I could purchase a portable lift that can be stored in the cabin after using it to transfer Britt to the airplane seat. I argued that a portable Advance Hoyer lift (http://www.phc-online.com/v/vspfiles/html/lift_hoy_advance.shtml) may do the job better than we could ever do with the aisle chair or human strength. However, the agent said the airline will not allow this device, for which reason I could not understand. Still, someone may yet test my theory.
Two hours before flight time? Make that three! Disabled travelers appear to be an uncommon occurrence at ticket counters that many counter personnel may be very unfamiliar with the procedures of checking them in. The ones who checked us in both airports needed assistance from supervisors/senior personnel, in person and by phone. I pointed out that we are entitled to one free luggage which contained three of Britt's machines: compressor, tabletop suction machine and chest percussor. One other box contained most of his other care needs (suction catheters, wash basin, etc.) but I believe this does not qualify for free, although, looking back, I should have asked for sure. There will be delays at the ticket counter because of the situation so make sure there is ample time to check and recheck - for you and the counter people.
I can't tell now whether talking to the airline agents multiple times several weeks before about Britt's transfer made any difference. Describing his condition and asking specifically for strong, tall people to be on hand to help did not translate into reality. Two potbellied small Filipinos at the HNL airport were assigned to assist us. I ended up making the manual transfer myself (thanks to adrenalin, obviously) because their self-doubt increased my own about their ability to make a safe transfer. It was a risk I took but I thought I was a better risk. I think what made a difference was the fact that they actually SAW Britt and the Filipino Skycaps probably reported to their supervisors about the passenger Robillard because when we arrived at LAX and in returning at HNL, we had more reassuring assistance.
Airport security. This website will help in preparing you for the security procedures you have to go through: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm. Letting the airline know ahead of time, at least 48 hours before travel, of your need for assistance will allow them to work with you regarding your needs. We had no trouble with airport security at both airports. They were helpful and respectful - their questions pertinent and straightforward. I told them Britt couldn't communicate the familiar way, so the Skycap assistant pushing his wheelchair helped in putting Britt's and my stuff on the conveyor belt so I could be with him while the security officer was patting him down. The only trouble I had was with the urinal which Britt had just used. I had warned the security lady about the urinal being with fluid but there was still spillage. Having learned my lesson, coming back I made sure I emptied the urinal before we went to security!
On to boarding area!
Ask for ways to make you more comfortable, including upgrades. Britt and I needed more space for different reasons. Booking etickets particularly through ticket brokers such as Travelocity restricts your choice of seats to what is made available by the carrier to that particular agent. At the boarding area, they gave us the seats behind the bulkhead right after their business class section where there was more legroom. It allowed Britt to stretch his long legs and for me room to reposition him during the 5 hour flight.
Don't forget the inflatable head pillow! To my consternation, I did. Consequently, for most of the flight, I had to make my right brain work overtime trying to create one with tiny blue blankets and my biceps, holding Britt's head up.
To be continued....
1. AIRPLANE: Economy or First class? was NOT a question. The fares for Britt, me and his student assistant were already more than a thousand bucks. No way would I pay more. I was sort of hoping that Delta (the cheapest online that I could buy) would be as sweet as JAL was the time we went to Japan: no questions asked, they upgraded me and Britt to business class. But the Delta flights both ways were fully booked, so that was that. We were a large party of seven traveling: Britt; myself; a student assistant who will help mainly with lip-reading; one of two graduate students who wanted to meet the demi-gods of ethnomethodology that Britt was going to see; and my two tweenaged nieces.
Know way ahead how the carrier handles people with special travel needs. Check the carrier website. I first pored through Delta's on disabled travelers. Airlines that outsource reservation function to call centers should rethink this strategy. I am not being discriminatory but there is something about the resulting frustration when the common language, English, is not spoken clearly. It was embarrassing how many times I had to have the guy on the other end to repeat himself. And he was sooooo sweet, too. He would put me on hold to refer to his supervisor. With the music on, you know he is still online but he would come back to me every 2-3 minutes and ask if I could hold for 2-3 minutes more. I call that consideration but I did need somebody whom I could understand without several repeats.
Unquestionably, transporting a man in a wheelchair whose only gross movement involved a shaking of the head is a special need. I needed the airline to understand that Britt needed to be in his own wheelchair all the way to the boarding area; that although I had others traveling with us, we were not in a position to transfer him to his airplane seat without assistance, mechanical or human; that Britt needed special handling with some quick understanding of his disabilities and respectful of his condition as well as his dignity. I described to several reservation agents what Britt's situation was. I even emailed them directly. I wanted them to know that "this man is long, not heavy. But he is dead weight - he cannot help at all." I had seen the dreadful aisle chair - a device that is nothing more than a slightly reconfigured hand cart- that they said would be used to take him from the outside of the plane to his seat. If airline carriers are serious in assisting disabled passengers, the aisle chair is one of the things that need to be improved to provide safety as well as allow dignified handling of the disabled.
To address this concern, I tried to convince them that I could purchase a portable lift that can be stored in the cabin after using it to transfer Britt to the airplane seat. I argued that a portable Advance Hoyer lift (http://www.phc-online.com/v/vspfiles/html/lift_hoy_advance.shtml) may do the job better than we could ever do with the aisle chair or human strength. However, the agent said the airline will not allow this device, for which reason I could not understand. Still, someone may yet test my theory.
Two hours before flight time? Make that three! Disabled travelers appear to be an uncommon occurrence at ticket counters that many counter personnel may be very unfamiliar with the procedures of checking them in. The ones who checked us in both airports needed assistance from supervisors/senior personnel, in person and by phone. I pointed out that we are entitled to one free luggage which contained three of Britt's machines: compressor, tabletop suction machine and chest percussor. One other box contained most of his other care needs (suction catheters, wash basin, etc.) but I believe this does not qualify for free, although, looking back, I should have asked for sure. There will be delays at the ticket counter because of the situation so make sure there is ample time to check and recheck - for you and the counter people.
I can't tell now whether talking to the airline agents multiple times several weeks before about Britt's transfer made any difference. Describing his condition and asking specifically for strong, tall people to be on hand to help did not translate into reality. Two potbellied small Filipinos at the HNL airport were assigned to assist us. I ended up making the manual transfer myself (thanks to adrenalin, obviously) because their self-doubt increased my own about their ability to make a safe transfer. It was a risk I took but I thought I was a better risk. I think what made a difference was the fact that they actually SAW Britt and the Filipino Skycaps probably reported to their supervisors about the passenger Robillard because when we arrived at LAX and in returning at HNL, we had more reassuring assistance.
Airport security. This website will help in preparing you for the security procedures you have to go through: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm. Letting the airline know ahead of time, at least 48 hours before travel, of your need for assistance will allow them to work with you regarding your needs. We had no trouble with airport security at both airports. They were helpful and respectful - their questions pertinent and straightforward. I told them Britt couldn't communicate the familiar way, so the Skycap assistant pushing his wheelchair helped in putting Britt's and my stuff on the conveyor belt so I could be with him while the security officer was patting him down. The only trouble I had was with the urinal which Britt had just used. I had warned the security lady about the urinal being with fluid but there was still spillage. Having learned my lesson, coming back I made sure I emptied the urinal before we went to security!
On to boarding area!
Ask for ways to make you more comfortable, including upgrades. Britt and I needed more space for different reasons. Booking etickets particularly through ticket brokers such as Travelocity restricts your choice of seats to what is made available by the carrier to that particular agent. At the boarding area, they gave us the seats behind the bulkhead right after their business class section where there was more legroom. It allowed Britt to stretch his long legs and for me room to reposition him during the 5 hour flight.
Don't forget the inflatable head pillow! To my consternation, I did. Consequently, for most of the flight, I had to make my right brain work overtime trying to create one with tiny blue blankets and my biceps, holding Britt's head up.
To be continued....
Monday, May 25, 2009
Making the Impossible Possible: Traveling with a Severely Disabled Person – a Personal Case Study
I am making our recent trip to LA to witness our son’s graduation from college the case study for this post. This was my husband’s first trip to the mainland in 18 years. Having traveled with my husband off-island to Japan 12 years ago at the invitation of the Fukui ALS Association was helpful in anticipating the rigors AND fun of this experience. But this trip being personally motivated, financed and arranged, gave it a different flavor.
A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.
A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.
What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.
Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.
Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)
Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!
Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.
As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.
(To be continued : The sine qua non– wheels, airlines, housing.)
A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.
A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.
What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.
Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.
Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)
Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!
Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.
As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.
(To be continued : The sine qua non– wheels, airlines, housing.)
Wednesday, May 13, 2009
See You At The ALS Seminar This Saturday!
May is ALS Awareness month. This Saturday is the annual ALS seminar. There was a nice article in the Star Bulletin today on Chester, who was diagnosed with ALS last year. He reminds me of my Dad because of his laid back, local, accepting attitude. He's living life to its fullest, traveling as much as he can, knowing that this disease is terminal, but not letting it get him down. My dad was just like Chester. He really had a zest for life.
Each year, we lose people to ALS. As we lose some, more are diagnosed, and there is still no cure for this debilitating disease. Please help support Muscular Dystrophy Association (MDA) in its quest to, one day, find a cure.
» What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)
» When: Saturday, 9 a.m. to 12 noon
» Where: Queen's Conference Center, 510 Beretania St.
» Why: Sharing local resources for families, caregivers
» Speakers: Keynote -- Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.
» Registration: Free. Call 593-4454.
» Sponsor: Muscular Dystrophy Association
We'll be there Saturday morning manning the ALS Support Group booth! Hope to see you there!
Each year, we lose people to ALS. As we lose some, more are diagnosed, and there is still no cure for this debilitating disease. Please help support Muscular Dystrophy Association (MDA) in its quest to, one day, find a cure.
» What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)
» When: Saturday, 9 a.m. to 12 noon
» Where: Queen's Conference Center, 510 Beretania St.
» Why: Sharing local resources for families, caregivers
» Speakers: Keynote -- Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.
» Registration: Free. Call 593-4454.
» Sponsor: Muscular Dystrophy Association
We'll be there Saturday morning manning the ALS Support Group booth! Hope to see you there!
Friday, February 27, 2009
Goodbye, Ron!
I did not know Ron personally. I met Marcia and daughter, Heidi, in March last year at Mary Valenti's house. We were having a break - forced by circumstances but nice, nevertheless - from our monthly support group meetings at the Queen's Conference Center and were enjoying noisy chatter by the pool. Marcia and Heidi brought veggies and dip to share and an antique mahjongg set. They had the anxious look of folks who have been touched irreversibly by the illness we know awfully well. With the exemplary control very much defining Southern belles, Marcia obliged our desire to learn the basics of mahjongg. We sooooo wanted them to feel we knew what they were going through and to just try to relax because the road ahead would be long and tough.
Last December, Nancy and I saw Marcia again, after getting kinda lost in their neighborhood. We were dropping off Christmas cookies. It was a very relaxed Marcia that greeted us at the gate. She led us into her beautifully decorated home. It was almost mid afternoon and Ron was resting in their room. Nancy and I oooh'ed and ahhhh'ed at the spectacular Christmas displays while Marcia played our gracious hostess. It occurred to me that she seemed to have come a long way, emotionally, from the first time we met her.
I never met Ron although I'd seen him briefly from across the lobby of the Queen's Conference Center at last year's ALS Seminar.
Ron was 58 when he died. He served as Aston Hotels and Resorts chief financial officer and executive vice president. He was born in Denver. Aside from wife Marcia A., Ron is survived by son Reid, daughter Heidi Rogers, mother Joyce and brother Scott. The family requests that donations be sent to ALS Therapy Development Institute, 215 First St., Cambridge, MA 02142.
Ron, you will be missed by those who loved you and knew you. Godspeed!
Last December, Nancy and I saw Marcia again, after getting kinda lost in their neighborhood. We were dropping off Christmas cookies. It was a very relaxed Marcia that greeted us at the gate. She led us into her beautifully decorated home. It was almost mid afternoon and Ron was resting in their room. Nancy and I oooh'ed and ahhhh'ed at the spectacular Christmas displays while Marcia played our gracious hostess. It occurred to me that she seemed to have come a long way, emotionally, from the first time we met her.
I never met Ron although I'd seen him briefly from across the lobby of the Queen's Conference Center at last year's ALS Seminar.
Ron was 58 when he died. He served as Aston Hotels and Resorts chief financial officer and executive vice president. He was born in Denver. Aside from wife Marcia A., Ron is survived by son Reid, daughter Heidi Rogers, mother Joyce and brother Scott. The family requests that donations be sent to ALS Therapy Development Institute, 215 First St., Cambridge, MA 02142.
Ron, you will be missed by those who loved you and knew you. Godspeed!
Thursday, January 29, 2009
Next Week: Blackout!! Part II: What To do to Prepare for Power Outage
At our January support group meeting, we discussed what people learned because of the island-wide blackout that happened day after Christmas last year. I will attempt to describe what the group discussed on this topic. Please think of your own blackout experience and share them in the "Comments" section right following the blog. Looking forward to this next one and hope you are, too!
BLACKOUT!!! Experiences and Tips on How to Cope
This will be a three-part blog. First, I will share my blackout experience plus those of three other Oahu families. Next week, I will outline some practical tips on how to prepare for power outage situations. The week following, I will discuss a common power replacements, mainly generators. At the end of these installments, I will ask you to share your thoughts on the topics in the "comments" section at the bottom of the blog because the main idea of these blogs is to exchange information and learn from each other.
We moved Britt to the hallway where the emergency lights were on within the inside maze of faculty offices. Beyond the big open double doors of the maze, the yellow glimmer emanating from the emergency lights spaced farther apart provided some illumination. We heard loud footsteps and voices in the courtyard and stairwell. I could tell Alpha was as wary as I was. Darkness, loud noises and footsteps in the dark on a rainy night in a mostly empty campus can be a spooky combination. Within a few minutes, to our relief, Lloyd, a graduate student carrying a dim flashlight came by. None of us were sure of the campus security number so Alpha went into the office to look for it in the staff directory. When I got security on the phone, I asked for a couple of security guards to help us bring Britt down to the ground floor in his wheelchair. The lady kindly said they couldn't spare anyone as everybody was out responding to all sorts of alarms that were ringing throughout campus. They would only respond to emergencies. They didn't think Britt in his wheelchair marooned on the second floor of a dark building, accompanied by two women armed with only cell phone lights and a grad student with a dim flashlight, was one. I suddenly remembered that our son, Tom, was in nearby Kahala hanging out with friends, so I called him. Fortunately, he was with six of his Iolani buddies, and could come right away. Ten minutes of waiting seemed an eternity in the darkened hallway so I said I was going to get my flashlight, which I knew would be brighter than Lloyd's, from the van. Alpha, the city girl from Hongkong, would not let me go by myself so, replacing her high heels with a pair of flip flops and taking a big serving fork from our silverware drawer, she accompanied me down the really dark stairwell into the parking lot. We had left Britt in Lloyd's care.
The brightness from my trusty flashlight stabbing the pitch black of the parking lot was such a relief! Back upstairs while rescuing the abandoned dishes from the bathroom, we heard hearty laughter outside in the hallway. I recognized Tom's voice; it never sounded sweeter. When everyone got positioned, gently and slowly, several pairs of hands carried Britt down four flights of stairs. We met some friends in the stairway with whom we talked story, further relieving the tension of the last half hour. We finally got Britt into the van and soon, we were driving off through the unusually dark, a-bit- confused streets of Honolulu, with Alpha planning to drop her off in the safe company of her friends.
The island-wide blackout meant other people with ALS on Oahu were just as affected. Ken Ching described his and Sherry's experience in an email:
We were in Kaneohe when it happened. Went directly home and of course we could not get into our
apartment. I walked up and got her meds and whatever to keep her comfortable in the car. (We had to use Pali Momi's bathroom).When we were through using Pali Momi Hospital's bathroom we parked in their handicap stall for a little more than an hour. We had the security guard's permission- in fact they invited us to park there and said they would watch out for us. We left there after I started coughing - realizing I did not take my antihistamines and we drove back to the apt. I got my meds and Sherry's plus the things to make her comfortable. When I went back down the Security guards told us to park at the pool so we could use the bathroom if needed. I moved to the pool and parked. We did not have dinner and of course I was hungry- Sherry does not need much food. I went back up to get a snack and the emergency radio and the lights went back on at about 1030. I took the elevator down and moved the car to the front to take her up to the apt. Parked and then the power went off. I decided to stay in front and we camped there until 2:30 am when the power finally came on for good. Of course we slept most of the day. A little adventure when you consider that it could be worse when comparing it to being lost at sea. Here you are on land surrounded by resources and choke with people to help.
Rick and Mineko's experience was a little bit more concerning but turned out to be not too bad with help from friends and friendly (and buff!) firefighters. In an email, Rick wrote:
We had an exciting blackout experience as well. My wife, Mineko, wanted to work late, but I was kind of nervous about all the thunder and lightning and rain so she came home a little bit early. Five minutes after coming home, "poof" the lights went out. We thought we were prepared with my backup marine battery and also another backup battery for my BiPAP. We figured we had about 10 hours worth of electricity to run my BiPAP machine. We to do KSSK and realize soon that it was islandwide and after the last experience from the earthquake, we knew it might be 20 to 24 hours before power came back on. So, we knew we'd have to get to [the hospital] somehow. At the same time I had nurses and friends calling to check on me. Everyone suggested that we leave for the hospital as soon as possible and not wait until my batteries were almost drained of power. So we called the 911 service and ambulance and fire came within 10 minutes. The firemen put me in a chair and carried me down 17 flights of stairs. And ambulance, thankfully, was willing to take me to Kaiser Hospital. I know most of the people at Kaiser Hospital so they were ready for me when we got there. I spent a relatively comfortable night at the hospital. Mineko, unfortunately, had to sleep in the chair next to me. We finally came home using the "Five-star transport service" at around 5:30 PM Saturday. It was a long and interesting experience. We learned a lot and now realize that we probably need a backup generator and some kind of uninterrupted power source for my BiPAP machine. But we are safe and sound now and blessed that we had so many angels and caregivers looking out for us.
Lisa Yamaguchi's family had a more difficult experience. In a phone call, Dad Richard told me (I am paraphrasing here):
I knew Lisa's vent backup battery was broken. Earlier that month, I told the respiratory therapist that but told them no rush. When the blackout occurred, I immediately regretted having said that. We knew we had half an hour of power in the vent. So we called 911. The ambulance came and took Lisa and Jane (Lisa's mom) to the hospital. I followed in my car in the traffic. On the way, I learned that Lisa was refused admission at Pali Momi because their ER was overflowing. Same with Kaiser. Finally, Queen's admitted her but they said it was fortunate she had her own vent because the hospital has run out of them.
These experiences tell us that, in case of disturbances in the normal course of life such as a blackout, people like us have plenty of good stories to tell our friends and grandchildren. But, more importantly, we need to be prepared so we are not caught unawares.
In next week's installment, we will tackle "Things we should have done to prepare for a blackout, so we don't kick ourselves in the dark." Meanwhile, please share your "blackout!" stories...
I.
It happened unexpectedly the day after Christmas. This was a typical Friday afternoon at the UH Manoa campus during Christmas break. A few students in the Social Sciences building were hanging out in the 7-floor edifice while most were either on vacation or have already started their weekend. There was reportedly a thunderstorm raging outside but inside Britt's office, we were made oblivious by central airconditioning and window blinds. Moments before the blackout, we - Britt, Alpha (his student assistant) and I - were performing the last few rituals of a day at the office. Britt was listening to politico.com while Alpha was straightening his desk. As was my practice at the end of the day, I was in the department second floor bathroom, washing dishware used that day when suddenly, I thought I suffered a stroke and became blind! I could feel the cool water running over my hands but I could not see a thing! Abandoning the dishes in the bathroom and glad that I know I was still able to walk, I groped out into the hallway where there was some glimmer of light. Happy to note that it was the lights and not me that had gone blind, I walked to Britt's office. Inside, it was pitch black except for the tiny glare of Alpha's cellphone.We moved Britt to the hallway where the emergency lights were on within the inside maze of faculty offices. Beyond the big open double doors of the maze, the yellow glimmer emanating from the emergency lights spaced farther apart provided some illumination. We heard loud footsteps and voices in the courtyard and stairwell. I could tell Alpha was as wary as I was. Darkness, loud noises and footsteps in the dark on a rainy night in a mostly empty campus can be a spooky combination. Within a few minutes, to our relief, Lloyd, a graduate student carrying a dim flashlight came by. None of us were sure of the campus security number so Alpha went into the office to look for it in the staff directory. When I got security on the phone, I asked for a couple of security guards to help us bring Britt down to the ground floor in his wheelchair. The lady kindly said they couldn't spare anyone as everybody was out responding to all sorts of alarms that were ringing throughout campus. They would only respond to emergencies. They didn't think Britt in his wheelchair marooned on the second floor of a dark building, accompanied by two women armed with only cell phone lights and a grad student with a dim flashlight, was one. I suddenly remembered that our son, Tom, was in nearby Kahala hanging out with friends, so I called him. Fortunately, he was with six of his Iolani buddies, and could come right away. Ten minutes of waiting seemed an eternity in the darkened hallway so I said I was going to get my flashlight, which I knew would be brighter than Lloyd's, from the van. Alpha, the city girl from Hongkong, would not let me go by myself so, replacing her high heels with a pair of flip flops and taking a big serving fork from our silverware drawer, she accompanied me down the really dark stairwell into the parking lot. We had left Britt in Lloyd's care.
The brightness from my trusty flashlight stabbing the pitch black of the parking lot was such a relief! Back upstairs while rescuing the abandoned dishes from the bathroom, we heard hearty laughter outside in the hallway. I recognized Tom's voice; it never sounded sweeter. When everyone got positioned, gently and slowly, several pairs of hands carried Britt down four flights of stairs. We met some friends in the stairway with whom we talked story, further relieving the tension of the last half hour. We finally got Britt into the van and soon, we were driving off through the unusually dark, a-bit- confused streets of Honolulu, with Alpha planning to drop her off in the safe company of her friends.
The island-wide blackout meant other people with ALS on Oahu were just as affected. Ken Ching described his and Sherry's experience in an email:
We were in Kaneohe when it happened. Went directly home and of course we could not get into our
apartment. I walked up and got her meds and whatever to keep her comfortable in the car. (We had to use Pali Momi's bathroom).When we were through using Pali Momi Hospital's bathroom we parked in their handicap stall for a little more than an hour. We had the security guard's permission- in fact they invited us to park there and said they would watch out for us. We left there after I started coughing - realizing I did not take my antihistamines and we drove back to the apt. I got my meds and Sherry's plus the things to make her comfortable. When I went back down the Security guards told us to park at the pool so we could use the bathroom if needed. I moved to the pool and parked. We did not have dinner and of course I was hungry- Sherry does not need much food. I went back up to get a snack and the emergency radio and the lights went back on at about 1030. I took the elevator down and moved the car to the front to take her up to the apt. Parked and then the power went off. I decided to stay in front and we camped there until 2:30 am when the power finally came on for good. Of course we slept most of the day. A little adventure when you consider that it could be worse when comparing it to being lost at sea. Here you are on land surrounded by resources and choke with people to help.
Rick and Mineko's experience was a little bit more concerning but turned out to be not too bad with help from friends and friendly (and buff!) firefighters. In an email, Rick wrote:
We had an exciting blackout experience as well. My wife, Mineko, wanted to work late, but I was kind of nervous about all the thunder and lightning and rain so she came home a little bit early. Five minutes after coming home, "poof" the lights went out. We thought we were prepared with my backup marine battery and also another backup battery for my BiPAP. We figured we had about 10 hours worth of electricity to run my BiPAP machine. We to do KSSK and realize soon that it was islandwide and after the last experience from the earthquake, we knew it might be 20 to 24 hours before power came back on. So, we knew we'd have to get to [the hospital] somehow. At the same time I had nurses and friends calling to check on me. Everyone suggested that we leave for the hospital as soon as possible and not wait until my batteries were almost drained of power. So we called the 911 service and ambulance and fire came within 10 minutes. The firemen put me in a chair and carried me down 17 flights of stairs. And ambulance, thankfully, was willing to take me to Kaiser Hospital. I know most of the people at Kaiser Hospital so they were ready for me when we got there. I spent a relatively comfortable night at the hospital. Mineko, unfortunately, had to sleep in the chair next to me. We finally came home using the "Five-star transport service" at around 5:30 PM Saturday. It was a long and interesting experience. We learned a lot and now realize that we probably need a backup generator and some kind of uninterrupted power source for my BiPAP machine. But we are safe and sound now and blessed that we had so many angels and caregivers looking out for us.
Lisa Yamaguchi's family had a more difficult experience. In a phone call, Dad Richard told me (I am paraphrasing here):
I knew Lisa's vent backup battery was broken. Earlier that month, I told the respiratory therapist that but told them no rush. When the blackout occurred, I immediately regretted having said that. We knew we had half an hour of power in the vent. So we called 911. The ambulance came and took Lisa and Jane (Lisa's mom) to the hospital. I followed in my car in the traffic. On the way, I learned that Lisa was refused admission at Pali Momi because their ER was overflowing. Same with Kaiser. Finally, Queen's admitted her but they said it was fortunate she had her own vent because the hospital has run out of them.
These experiences tell us that, in case of disturbances in the normal course of life such as a blackout, people like us have plenty of good stories to tell our friends and grandchildren. But, more importantly, we need to be prepared so we are not caught unawares.
In next week's installment, we will tackle "Things we should have done to prepare for a blackout, so we don't kick ourselves in the dark." Meanwhile, please share your "blackout!" stories...
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