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Ernie Devald is a volunteer at St. Rose Dominican Hospital. I'm not sure which one. There is one location in Las Vegas and two in Henderson (just outside of Las Vegas). My sister Judy died at St. Rose. Again, I'm not sure which one. But this blog tonight is not about Judy. It's all about Ernie, Debbie, Stacey, and Jeff.
Ernie is one of the 2010 Healthcare Heroes for Southern Nevada, and tonight he is being presented with the Humanitarian of the Year Award for his volunteer work at St. Rose. That's really something to be proud of and I'm certainly proud of him. I met Ernie for the first time at my sister's funeral. He was there because he loved my sister, and also because my sister was his daughter's mother-in-law. Ernie and his wife Debbie are the parents of Stacey. Stacey is married to my nephew Jeff, my sister and husband Bob's son.
I could never do right by Ernie in describing what an incredible human being he is. I can tell you that he volunteers with the pediatric cancer patients. Yeah, the kids. I can't imagine how heartbreaking that could be. But I can imagine how uplifting it is because Ernie says so. He talks about his work (and others talk about him) here Words That Heal for St. Rose Pediatrics and here Las Vegas Sun - Ernie Devald. You really must read the articles. This is one amazing man.
If you've read Ernie's story, you know how compassionate he is and how much he loves the kids. He loves them so much that he even had his head shaved in solidarity and to honor the kids and their struggles.
This is a man who is always there for others even as he fights cancer himself. The old adage says "Behind every man is a good woman", and it's so true in this case. Ernie can do what he does not only because he is kind and loving, but also because he has the support and love of his wife Debbie. Debbie, too, has spent her life in helping others as Executive Director for Juvenile Diabetes and American Diabetes for over 20 years. While doing her own important work and volunteering, Debbie has been behind--no, make that "beside"--Ernie to help him in whatever capacity he needed so that he could continue to do the work that makes him so happy. But it doesn't stop there. She also works with her daughter, Stacey. Volunteering and philanthropy is a family tradition.
Stacey, my niece-in-law, is the founder and principal of "Professionals in Philanthropy, LLC". The mission of her firm is "To help donors and nonprofits become the catalyst for change through strategic, effective and thoughtful planning and action". That's the professional way of saying that they help people with lots of money and non-profits make the best use of their time and resources, and they do a lot of other things that I won't venture to put into words because I'm sure I would get it wrong. This company is a really big deal and you can read more about it at Professionals in Philanthropy, LLC. Stacey has been married to my nephew Jeff for about 9 years now. They fit together like a hand in glove. Jeff is a big ol' teddy bear, sweetheart of a guy who you just want to hug every time you see him. He and Stacey do everything they can to support and help Ernie and Debbie as they go on this cancer journey. I came across this exchange between Debbie and Stacey:
Debbie: Celebrating the holidays with family and friends. A two night stay at the M Resort was heavenly. Stacey & Jeff spoiled us with a fabulous dinner at Terzetto's Steak and Seafood Restaurant.....delicious!
Stacey: We enjoy spoiling you guys! We're all so fortunate to have each other and that we had another wonderful Christmas.
Isn't that what life is all about? Having one more dinner, one more Christmas, just one more day in the life with the people you love and who love you. You really can't ask for more than that.
Ernie is receiving his award tonight. I'm so happy that he is feeling well enough to be there. It's always good when the nice guy wins and when his family is there to be part of it. Congratulations, Ernie. Here's to you! And here's to those who love you.
(Many thanks to Debbie and Stacey for the pictures, etc., especially since I grabbed them without asking first!)
I picked up the BIPAP stuff and tried it for the first time last Thursday night. Here are a couple of views of the machine.
As you can tell from the sticker, there is a tub that I fill with distilled water. The water keeps some humidity in the air that gets blown into my nose so that the nose tissues and airways don't become all dried out and sore. One end of the hose hooks on to the tub cover. The other end of the hose hooks on to the mask.
Doesn't that look like fun? I kept wondering how in the world I would ever be able to sleep with that thing on my face and pressurized air shoving into my nose. Well, I found out how. Very nicely. Best night of sleep I've had in a very long time. I couldn't believe it. The morning after the first night of using the machine, I woke up alert. I wasn't yawning. I wasn't foggy brained. I didn't feel like I needed to sleep another 6 hours. It was amazing. I'm calling it a miracle.
When I told my Dad what I would have to do and showed him what I would have to deal with, he said, "You can get used to anything." As always, he was right. I can get used to sleeping and waking up like normal people. It's a wonderful feeling.
When I turn 57 on my birthday tomorrow, I will be the same age that my sister Judy was when she died in 2007. It's a sobering thought and it feels weird in a what-am-I-doing-with-my-life kind of way.
Her death certificate gives the same cause of death that most certificates do. She stopped breathing. What killed her was the myelodysplastic syndrome and the hepatitis C. She died not too long after being removed from the national donor list for a liver (she had heart issues from rheumatic fever), and her liver stopped filtering the ammonia from her body. It failed, and she was dead a short while after she was removed from life support. My brother-in-law, niece, and nephew didn't make her endure the respirator any longer than necessary, and that's one of the many reasons that I will love them with all my heart until the day I die.
When my sister Lisa and I flew out to Nevada for Judy's funeral, I expected to see her lying in a coffin. I didn't expect how she looked. The only way I could recognize her was to stand at the back of the room and look at her profile. Then she was the sister I loved. When I walked up to the coffin and stared down at her, her face was so swollen and round that she didn't look like herself at all to me. "God, Judy, you look like hell," fell out of my mouth and I left the room in tears.
I walked around outside. Besides the funeral home, there was a cemetery and mausoleum. I sat in the cemetery on one of the benches and cried. Then I walked around looking at headstones and cried. I called Ginger back home and cried. I went back inside just before the funeral started and then I listened. I listened as one person after another told about how Judy had taught them about life and about living. I heard how Judy was so kind and caring and compassionate. How she took care of her friends as if they were family. What an inspiration and role model she was.
Judy wasn't the easiest person to have for a sister while we were growing up. She had a horrible temper that had to be seen to be believed. One time, when our new baby sister had been admitted to the hospital with possible meningitis, I said to Judy, "It's all right, Lisa will be okay." Judy's response to that was to explode on me. She grabbed a big butcher knife from the kitchen counter, chased me through the house and out the door. Fortunately, I could run much faster than she could. Having been the brunt of her temper many times, I had no doubt that she would have plunged that knife right through my heart if she had caught me.
Another time, I was getting ready to go to my summer job one day right after I graduated high school. I was working part time as a teacher's assistant at a grade school across town. I was dressed and ready to leave (I walked the 4 miles to work) when Judy demanded that I take off my panty hose (the only pair I had) and give them to her. She had been dressing for work, too, and had snagged a run in her last pair. I told her no, that she could stop somewhere on the way to work and get a new pair, and I left for work. Mom told me later that evening the she had awakened to the sound of Judy pulling my drawers out of the dresser and throwing them and their contents against the wall. Then she grabbed her car keys and said she was going to run me down and kill me. Mom must have believed her because she told Judy that if she left the house in the next hour, she would call the police and have her arrested. When I came home later that afternoon, Judy was friendly as ever and acted as if nothing had happened. She could be kind of psycho that way.
I remember calling my sister one Christmas Day and my niece answered the phone. She calmly informed me that her mother had just tossed the vacuum sweeper across the room. Something about the Christmas cookies not being baked. Marriage hadn't changed her temper, it seemed, after all. But I think being sick did. I think being sick changed a lot of things.
We had known since Judy had contracted the rheumatic fever in 4th grade that she probably would not live to a ripe old age. When her first child was born, her heart acted up so much that the doctors had to take the baby a few weeks early. But none of us dreamed of what was to come. She contracted hepatitis C from tainted blood. Then the MDS hit. A double whammy. She knew that one or both would end up killing her. And then she told the doctors that she wasn't dying until she was good and ready. It took her 10 more years before she was ready.
Judy fought for life, tooth and nail. All of we siblings were typed/match for a possible bone marrow transplant. Lisa won that contest. (Yes, Judy actually turned it into a competition.) She and Judy traveled to Seattle to the Fred Huchinson Cancer Clinic to get a preview of the procedures and processes. Judy was put on the donor list for a liver. And then she lived her life to the fullest. She had places to go, things to do, people to see. She did it all. She knew all too well how precious life was, every moment, and she tried to show us in so many ways. It wasn't unusual for her to send us an e-mail telling us that we had the best family, that we all take care of each other, that she loved us very much. Back home, she was teaching her family and friends there the same thing.
Judy has been on my mind a lot this week in the days leading up to my birthday. Tomorrow, I will be her age, and I wonder who I have encouraged. Who have I taught about life and living. Who have I been a role model for. What have I done with my life. Have I ever inspired anyone. And then I look at being 57 and I think that I don't have much time left. I may live to be 80, but I may die next week, who knows. Why do I live like I'm dying? Isn't it time to live like I'm living? If not now, when? If I knew I only had one week to live, what would I do with that time? What would be so important that I had to get it done before I die?
When I figure it all out, I'll let you know. In the meantime, Happy Birthday to me. I miss you, Judy.
Ginger returned home from Bahrain on July 4th. Everyone had a wonderful time. The team even had a swimmer who made it to the finals. But the International Children's Games aren't really so much about competition. The Games were started by a gentleman (more like a "gentle" man) over 40 years ago who wanted to promote peace and friendship through sports. The participants are children ages 12-15 from around the world. These kids learn to communicate with, listen to, and understand each other. They learn that differences aren't so frightening, that peace and friendship across national, racial, gender, and so many other lines are much more important than letting those differences foster hate and prejudice. I have faith that these children will not grow up to start or join groups like "THIS IS AMERICA...I SHOULDN'T HAVE TO PRESS 1 FOR ENGLISH."
"THIS IS AMERICA..." is a group on Facebook. This group has every right to exist and I support its right to exist. Freedom of speech is very important to me. Without it, I couldn't write this blog. But this group makes me sad. It makes me wonder how we Americans have become so haughty, so arrogant, that we think our country and our world exist just for us.
There's no doubt in my mind that this group is aimed at the immigrants living in our country, legal or otherwise, and specifically those of Hispanic descent. When I phone in my prescription refills, I'm advised that I can press "9" if I need to converse in Spanish. That doesn't bother me a bit. It takes about 2 seconds for me to listen to that little message. For me, it's just a blip. But for someone who only speaks Spanish and needs medication, it's a lifeline. When Ginger and I were in Italy last October, we went to an outdoor restaurant on the plaza in Florence to have dinner. I opened the menu and my chin just about hit the table. The menu was written in Italian. Turn the page and the menu was written in English. Turn the next page and the menu was written in German, and then in Japanese, and then in Spanish. You get the idea. The menu was written in 9 different languages. Signs around the city were posted in Italian and English, and oftentimes other languages. Store employees could converse in lots of languages. One morning, we had breakfast with a little girl and her mother. The little girl (maybe 7 or 8) was learning English in school. She could already speak Italian, German, and another language (I can't remember which one).
European cities, Asian and Middle Eastern cities, many countries do everything they can to make a visitor's stay memorable and easy, especially for those of us who only speak English. Would it hurt us so much if we did the same and returned the favor? "HEY! IF YOU'RE GOING TO LIVE HERE, LEARN THE LANGUAGE!" That comes out of the mouths of so many smug American faces. English is one of the hardest languages in the world to learn. Can't we give people a little time? Can't we give people however long it takes?
This group makes my heart hurt. As Anne Lamott so accurately wrote, it makes me "want to drink gin straight out of the cat dish." She's also the one who wrote, "You can safely assume you've created God in your own image when it turns out that God hates all the same people you do." I don't believe that God hates the immigrants in America, not even the illegal ones. I do believe that "THIS IS AMERICA..." has created God in ITS own image. I hope no one I know or love buys into this group.
Please press "1" for peace, love, and understanding. Let there be peace on Earth. And let it begin with me.
Aren't we just thrilled to be here? Yes, we are! I don't know about you, but I could be back at Dr. SnoozeAndDoze's place wired up like a motherboard on speed. See Exhibits A and B below:
I think these photos came out pretty good, considering that I was shooting into the mirror. Besides all the stuff you can see on my head, face, and neck, I was also hooked up across my collarbone, and there were wires under my shirt and through my pants' legs hooked up to both shins. I couldn't get a picture of me in the mask because once the thing hanging around my neck was hooked in to the wall socket, I couldn't drift more than a foot or so from the bed. Rest assured that there will be more pictures once I get my machine and mask.
No, I haven't received the machine and mask yet. It turns out that I need a bi-level unit and that one had to be ordered. I should get it sometime this week. Why, you ask, do I need a bi-level unit? Good question! Thanks for asking! Because I'm a delicate little flower, that's why. (Hey! I heard that snort! Let me remind you that I know where you live and I'm crazy.) I can't exhale very well while there's a bunch of pressurized air being forced into my nose. I don't breathe hard enough to push the air out through the incoming rush. So I'll be using a machine that blows the air into my airways at the needed pressure, but then backs off when I exhale so that I can get the air back out. Cool, huh?
I keep saying "mask" because the comparatively tiny things I posted a picture of in a previous post is not what I will have. After trying both kinds, it ended up that I can tolerate the mask on my face much better than the things going into my nose. And, again, it was easier to exhale without things in my nose. The mask covers my whole nose and has straps over the top of my head and around my face.
I still don't know how anyone can be expected to sleep during a sleep study. You've seen how I was wired and you've got a good idea of how the mask works and is strapped on. I slept about 3 hours. As my friend Carolyn pointed out, "Isn't the mask supposed to help you sleep better?" Yes, and it will. But there's that adjustment period. I have to get used to having that thing on my face, and that thing has to get used to me. It's kind of a package deal. Don't ask me what that means. That's what I was told.
So I'm waiting for the equipment and then we can start the honeymoon. I'm also waiting for those lab results from Dr. OhMyAchyBody. It's always about the anticipation. Shoot, just when I thought I'd be witty and put the old Heinz Ketchup commercial video here (the one with Carly Simon's song "Anticipation", remember?), I find it's been removed from YouTube because of terms of use violation. Curses, foiled again!
Better quit while I'm ahead.
Forget about the massive cleaning. I'll be lucky to finish the bathroom. Which is where I'm spending most of my time today and not just to clean, unfortunately! Everybody ready......TOO MUCH INFORMATION! :-)
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