"Serenity House"
Serenity House was the name we chose for the coffeehouse a couple of us decided to make available in Ottawa in the summer of "68." It had a short, one-summer lifespan. As I remember it, Horse and I were the primary owners with lots of help from "Big Dave" and Mud and some others as their political persuasions allowed (nicknames intentionally used to mask the identity of those involved except for those who knew us best by those names). There's no doubt in my mind we worked a lot harder getting the first floor of the old Gulker building presentable for business than we did the whole rest of the summer! (Let me clarify alittle. I was referenciung the work at the coffeehouse - I worked third shift at Sylvania also: first unloading the tubes from the ovens, then salvage)! The only reason we were ever able to open was because of Big Dave's construction knowledge and work ethic!
Several of our views about the world experienced some tweeking during our just completed first year in college. We thought differently about race relations and the Viet Nam war and the plight of the migrant worker and authority and religion and .... a lot of other stuff. Our primary intent for opening the coffeehouse was to provide a safe place for people to exchange ideas over the summer. The warm and soft light from candles sat on the card tables we had borrowed from our homes and picked up at garage sales. We were going for a sense of sereneness.
Well, while there was plenty of conversing, poetry reading, folk singing and political discussions that went on around the candles in the coffeehouse we observed that there wasn't always an atmosphere of serenity created as a result. We'd been warned by our more seasoned friends at school and had been part of such scenes on and off campus ourselves. So, we weren't all that surprised or disappointed with what happened inside the Serenity House.
No, our real disappointment and pain was the result of the reaction outside the walls of the Gulker building. It was rumored that we had prostitutes on the second floor and the coffeehouse was just a front. The truth being we had only ventured up there once and refused to go up there again because of the amount of pigeon poop all over - think of Bill Cosby's comment to God by Noah for a picture of the reality: "Have you looked in the bottom of the ark, Lord? Seriously, who's going to clean that up?! Not me, no siree!!"
It was also rumored that we sold drugs - I guess because I had longer hair than when I graduated and the popular image of what people associate with coffee houses. The only things we sold were snacks, coffee, and flavored teas. We've been teased over the years about our unique Lifesaver flavored teas!
Probably the thing that disturbed me the most though was that some guys who had returned from Nam were commenting on what they would do to me if they met me on the streets. One of them was engaged to one of my friends, a friend since the first grade. I wanted to meet with him. More than one friend suggested that I not pursue it - that it would only heighten the tension. My desire to meet with him was not to try and discuss our positions about war but to reassure him that my attitudes and ideas were based on political and religious beliefs and not a criticism of military personnell who risked their lives for the nation and for all of us. I wanted to make a case for being able to have differing points of view and to do so civilly. I wanted to make a friend, not an enemy; build bridges, not destroy them. Our paths never did cross that summer nor have they in the years since.
It was a long, hot summer. I was supposed to gain 20 lbs. for football that summer. I drank a banana milkshake from Tony's every day! I also worked the ovens at Sylvania and worked out every day and got very little sleep, I returned to football practise at ONU two lbs. heavier!
It was not a wasted summer by any means though. I learned a lot about myself and other people. It was another one of those stepping stones that helped clarify my call to ordained ministry and shape some of the tenets that would guide me in that ministry. I'm not sure I could have vocalized it then, but it certainly influenced adjusting my way of dealing with my beliefs and those of others. At some point along the way thoose early years I decided that my role was not to convince people of the rightness of my way of thinking - religious, politics, or whatever - but, a desire to be more open to exploring with others their ideas, opinions, dreams, and hopes with the intent that they develop their own path through life. And yes, that meant some chose atheism (I have a real problem with fellow Christians who choose to make jokes about the serious-minded ones it's been my honor to count among my friends), some are racist, some are republicans, some are Steeler fans, some are conservative, some are liberal, some blame the poor for all the problems in our world and specifically our country, some blame the same on the rich, etc.
Have I been true to that principle 100% of the time? No, I'm as hypocritical at times as all of us. But, I don't want to be. In fact, I think I need to attempt to refriend someone on Facebook I defriended a few weeks ago!
Bye! Oh, and it wasn't the most serene summer of my life!
Sunday, April 27, 2014
Wednesday, April 23, 2014
2014 ALS Advocacy Letter Info
Dear Family and Friends,
Most of you are aware that due to a drug interaction I had to cancel going to Washington D.C. last May for the 2013 National ALS Advocacy Conference. Fortunately, we were able to deliver 380 letters from many of you to both Senator Rob Portman and Senator Sherrod Brown (and to other senators because of friends all over the U.S.) by dropping them off to The ALS Association's Central & Southern Ohio Chapter's executive director, Marlin Seymour, the night before her departure. We've been informed it left quite an impression.
Well, Dorothy and I have been given a second chance to share our story with our senators! We've again been invited to attend this year's event representing the area ALS Chapter. We worked out the kinks for traveling with our trip to Florida in February and with the help of Jeremy & Megan, our children, are going to make it happen this year. We believe we represent many voices when we go and we want to properly represent yours by delivering another stack of letters to our senators!
To that purpose the third page of this email is a form letter written by the national office seeking to change a very important decision that was made by CMS to no longer purchase speech generating devices and changing to a per month rental (you can read about the concerns this raises for those of us who depend on such equipment in the letter). If you only have time to sign two letters to Portman and Brown, that's fine. Feel free to email them back to me at bcroy22@gmail.com, or snail mail them to me at 2700 Unbridled Ct., Powell, Ohio, 43065. PLEASE RETURN THEM TO ME BY SUNDAY, MAY 4!
Now, a good friend of ours who has quite a bit of experience with lobbying efforts shared with us recently that letters are even more effective if there are some words different in each letter. The second page of this email is what we are going to send as an example. If you have the time and are willing, we invite you to consider doing this. At the very bottom of this email is a short note from Marlin in response to my questioning if this effort is worth it.
Again, we cannot thank you enough for your support in all of our advocacy efforts! Feel free to forward to your family and friends as well. (Oh, my apologies if you are the recipient of more than one email. I combined numerous lists I have compiled and while I tried to catch duplications, I'm sure I missed many.)
We love and appreciate you all,
Bill & Dorothy Croy
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
I'm very concerned about the decision, effective April1, made by the Centers for Medicare and Medicaid Services (CMS) changing the manner in which it pays for speech generating devices (SGDs). This decision potentially took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate. I was fortunate enough to have needed mine over a year ago and cannot begin to tell you how vital it has been for communicating with others for my caregiving, staying in touch with people, and developing a blog about my journey as a form of personal advocacy. My blog is "Giving Wings to Thoughts": http://wcroy22.blogspot.ca/.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs) and in the process took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Bill, I have seen letters have a tremendous positive effect on Members and their staff and particularly if we can walk in and physically HAND a stack of letters directly to them at the meeting -- I think it is worth it.
Regarding wording, yes, I would agree that having different wording would be the best. However, I've seen the process slowed down greatly or letters never written, if it takes too much time for someone to accomplish. I think it helps the "advocate" to not have to start with a "blank slate" so we like the idea of providing the "body" and then asking the writer to personalize the letter in at least one paragraph and to do it near the beginning of the letter. If they have limited time and you are trying to get the task out to the masses, this is the way to go. If it is a group that has more time available to them to write a compelling personal letter, all the better!
Thank you for taking this on - - my opinion is that it is definitely worth the effort.
I worked for my Member of Congress from TN on the Hill and I can tell you that we paid attention when someone walked in with a stack of letters on a particular issue and they were signed and had handwritten names and addresses included -- it was then a priority to be put before the Member to at least look at for consideration.
M.
Marlin K. Seymour
Executive Director
The ALS Association Central & Southern Ohio Chapter
1170 Old Henderson Road Ste 221
Columbus, Ohio 43220
Phone: 614-273-2572 ext. 102
Toll Free: 866-273-2572 ext. 102
Fax: 614.273.2573
mseymour@alsohio.org
Most of you are aware that due to a drug interaction I had to cancel going to Washington D.C. last May for the 2013 National ALS Advocacy Conference. Fortunately, we were able to deliver 380 letters from many of you to both Senator Rob Portman and Senator Sherrod Brown (and to other senators because of friends all over the U.S.) by dropping them off to The ALS Association's Central & Southern Ohio Chapter's executive director, Marlin Seymour, the night before her departure. We've been informed it left quite an impression.
Well, Dorothy and I have been given a second chance to share our story with our senators! We've again been invited to attend this year's event representing the area ALS Chapter. We worked out the kinks for traveling with our trip to Florida in February and with the help of Jeremy & Megan, our children, are going to make it happen this year. We believe we represent many voices when we go and we want to properly represent yours by delivering another stack of letters to our senators!
To that purpose the third page of this email is a form letter written by the national office seeking to change a very important decision that was made by CMS to no longer purchase speech generating devices and changing to a per month rental (you can read about the concerns this raises for those of us who depend on such equipment in the letter). If you only have time to sign two letters to Portman and Brown, that's fine. Feel free to email them back to me at bcroy22@gmail.com, or snail mail them to me at 2700 Unbridled Ct., Powell, Ohio, 43065. PLEASE RETURN THEM TO ME BY SUNDAY, MAY 4!
Now, a good friend of ours who has quite a bit of experience with lobbying efforts shared with us recently that letters are even more effective if there are some words different in each letter. The second page of this email is what we are going to send as an example. If you have the time and are willing, we invite you to consider doing this. At the very bottom of this email is a short note from Marlin in response to my questioning if this effort is worth it.
Again, we cannot thank you enough for your support in all of our advocacy efforts! Feel free to forward to your family and friends as well. (Oh, my apologies if you are the recipient of more than one email. I combined numerous lists I have compiled and while I tried to catch duplications, I'm sure I missed many.)
We love and appreciate you all,
Bill & Dorothy Croy
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
I'm very concerned about the decision, effective April1, made by the Centers for Medicare and Medicaid Services (CMS) changing the manner in which it pays for speech generating devices (SGDs). This decision potentially took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate. I was fortunate enough to have needed mine over a year ago and cannot begin to tell you how vital it has been for communicating with others for my caregiving, staying in touch with people, and developing a blog about my journey as a form of personal advocacy. My blog is "Giving Wings to Thoughts": http://wcroy22.blogspot.ca/.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs) and in the process took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Bill, I have seen letters have a tremendous positive effect on Members and their staff and particularly if we can walk in and physically HAND a stack of letters directly to them at the meeting -- I think it is worth it.
Regarding wording, yes, I would agree that having different wording would be the best. However, I've seen the process slowed down greatly or letters never written, if it takes too much time for someone to accomplish. I think it helps the "advocate" to not have to start with a "blank slate" so we like the idea of providing the "body" and then asking the writer to personalize the letter in at least one paragraph and to do it near the beginning of the letter. If they have limited time and you are trying to get the task out to the masses, this is the way to go. If it is a group that has more time available to them to write a compelling personal letter, all the better!
Thank you for taking this on - - my opinion is that it is definitely worth the effort.
I worked for my Member of Congress from TN on the Hill and I can tell you that we paid attention when someone walked in with a stack of letters on a particular issue and they were signed and had handwritten names and addresses included -- it was then a priority to be put before the Member to at least look at for consideration.
M.
Marlin K. Seymour
Executive Director
The ALS Association Central & Southern Ohio Chapter
1170 Old Henderson Road Ste 221
Columbus, Ohio 43220
Phone: 614-273-2572 ext. 102
Toll Free: 866-273-2572 ext. 102
Fax: 614.273.2573
mseymour@alsohio.org
Tuesday, April 8, 2014
?SERMON?: "Tears and Cheers"
"Tears and Cheers"
John 11:32-44
Another one of the PALS from our ALS support group passed away recently. She was diagnosed about the same time I was. She and her husband are one of the couples we've known the longest dealing with this reality of being one who is continually getting worse physically and the one providing the caregiving. They were such a positive and supportive couple - open about their situation and able to both laugh and cry in the group.
She stopped coming to group maybe about two years ago. He continued to come by himself for awhile. They began to use the help of hospice and their experience was probably one of the most influential reasons we decided to do the same last fall - a decision we haven't regretted. We have stayed in touch as Facebook friends. They are also the ones who recommended that we contact the Liberty Township Fire Department when we moved to the Powell area because of the special needs program they have. We did and it's a fabulous asset to the community and to our sense of comfort and security.
Her visitation was on Wednesday night and funeral on Thursday. One of the limitations of ALS is I tire and there's simply no way we can go to everything we want to. Especially frustrating is not being able to go to all the visitations and funerals for former church members, relatives of friends, etc. Because the visitation was in nearby Mt. Sterling and despite not having one of my best weeks physically or emotionally - perhaps partially because of her somewhat surprising death, perhaps partially because of having numerous health care visits, perhaps .... who knows - we decided we wanted to give it a go.
A side benefit was the opportunity to drive on out to Deer Creek State Park and spend a few hours in one of our favorite Ohio lodge lobbies. For two hours we sat next to each other (I still was in my wheelchair), sipping our Diet Cokes (no Diet Pepsi available!), and read books on our iPads. The Deer Creek State Park lobby is so warm, inviting, and comfortable. It doesn't provide the greatest water hole to look at, but the lobby makes up for it. It also brought back several memories of church workshops and family outings.
And then it was time to drive back into Mt. Sterling for the visitation. We saw numerous deer on the drive which added to a really nice afternoon. When we arrived at the funeral home just a few minutes after the start of visitation, there was no place to park. Sure it's what happens in small towns, but I think it also had a lot to do with the very special woman she was and that her family is. There were tears and there was laughter as family and friends came to comfort and remember. That's what communities do - communities of faith, family and friends - we cry together and we celebrate the well-lived lives of our loved ones.
The 11th chapter of the Gospel of John records the story of an episode in the life of Jesus and his friends Mary, Martha, and Lazarus. The three were siblings and close to one another as well as to Jesus. The only part of this lengthy and theologically inviting text I want to reference in this reflection is that verse often referenced in trivia games as the shortest verse in the Bible - "Jesus wept."
The two sisters had gone to Jesus to inform him that his friend and their brother, Lazarus, was not well. I guess Jesus didn't consider Lazarus' illness to be very serious because he took two more days finishing what he was doing. When they arrived in Bethany, the hometown of the trio, they were informed that Lazarus had been dead for four days and stunk. All of the siblings' friends were grieving with Mary and Martha - including Jesus. His grief was so great, he cried - wept.
It's what we do as a community of supporters/friends/caregivers - we grieve together - we shed tears about our loss, our common pain. And I'm not referencing here only communities of faith. It doesn't matter whether our community is made up of neighbors and friends, a bunch of people we worked with, people from the different towns we've lived in, family members, friends of our loved ones, past or present members of social or recreational groups we met with regularly, or even those who just knew of the deceased because of reputation in the community or world. I cried when Nelson Mandela died. I cried when members of my congregations died. I cried when parents of my high school or college friends died. I shed tears when I was informed of the sudden death of a classmate and then asked to do his memorial service. I mourn every time I hear of the death of another PALS, even if I only knew them as a fellow contributor on our "Living With ALS; for PALS Only" Facebook page.
"Jesus wept." This passage ordains tears as a proper response when we lose a friend or relative. The one who referred to himself as “the resurrection and the life” was sad about losing a friend. It is not a sign of a weak faith or a weak person to grieve. It simply is not true, as some of our faith seem determined to portray, that “real Christians” should only be joyous about everything that happens – that tears should never be shed, because pain is caused by God for our own good (Ugh! Sorry, just ugly untruth). We grieve – we are sad – we weep in the face of death because we are fully human just as our Savior Jesus was fully human. Healthy human beings grieve when painful things happen. Jesus cried because even if death does not speak the last word, it does speak a painful and hard word. The empty tomb is testimony that death is defeated, overcome, but not abolished.
“Jesus wept.” There’s nothing wrong with grief. There’s nothing wrong with shedding tears. It is a part of what it means to be human. It is expected of Christians as it is of all human beings. It’s one of the things we do with one another when someone important to us dies or even suffers.
But communities - all communities again - do something else very important with one another when someone dies. We hold funerals, more commonly and I happen to think appropriately referred to today as memorial services or services of celebration. We get together to remember and celebrate the life of the one who is no longer physically a part of our community. Sometimes we hold these events in funeral homes, sometimes in churches, sometimes in people's homes, sometimes in a favorite park or restaurant or bar, and sometimes in a school or a cemetery. And most of the time our tears are coupled with some cheers. Oh, not "Rah, rah" cheering, but laughter and hugs and words of encouragement and smiles and joy and hope as we remember the good times and the uniqueness of our loved ones - quirks and all. (True, it doesn't always happen. There are those occasions which are just too sad, too painful, too senseless. I don't want to ignore those realities even as I try to paint a picture of what is my most common experience. Please forgive me all those who've experienced such a tragedy in their life.)
When I think of the cheering role of our communities during the time after the death of a loved one, I cannot help but think of the passage in Hebrews (Hebrews 11 & 12) when the author provides this litany of folks who make up the "cloud of witnesses" (Hebrews 12:1) cheering us, encouraging us on our life journeys. I've often described that cloud of witnesses as our cheering section - usually as those who've gone before and play this role in the heavenly realms, but today I'm thinking it's helpful to consider our physical, living, communities who surround us in our day-to-day living.
As a community, we are those who live in the tension of shedding tears and cheering – we live as those who are able to shed tears and cheer at one and the same time – we are those who grieve deeply while deep inside us percolates this joy for the life lived by the one we loved. I think that's what was going on in that funeral home on Wednesday night as those who loved our friend and her family gathered. There were plenty of tears flowing, but there were also some cheers being offered - words of encouragement and hugs and laughter. May we all be mindful of our shared ministry of crying and cheering as we continue on this path of life together.
John 11:32-44
Another one of the PALS from our ALS support group passed away recently. She was diagnosed about the same time I was. She and her husband are one of the couples we've known the longest dealing with this reality of being one who is continually getting worse physically and the one providing the caregiving. They were such a positive and supportive couple - open about their situation and able to both laugh and cry in the group.
She stopped coming to group maybe about two years ago. He continued to come by himself for awhile. They began to use the help of hospice and their experience was probably one of the most influential reasons we decided to do the same last fall - a decision we haven't regretted. We have stayed in touch as Facebook friends. They are also the ones who recommended that we contact the Liberty Township Fire Department when we moved to the Powell area because of the special needs program they have. We did and it's a fabulous asset to the community and to our sense of comfort and security.
Her visitation was on Wednesday night and funeral on Thursday. One of the limitations of ALS is I tire and there's simply no way we can go to everything we want to. Especially frustrating is not being able to go to all the visitations and funerals for former church members, relatives of friends, etc. Because the visitation was in nearby Mt. Sterling and despite not having one of my best weeks physically or emotionally - perhaps partially because of her somewhat surprising death, perhaps partially because of having numerous health care visits, perhaps .... who knows - we decided we wanted to give it a go.
A side benefit was the opportunity to drive on out to Deer Creek State Park and spend a few hours in one of our favorite Ohio lodge lobbies. For two hours we sat next to each other (I still was in my wheelchair), sipping our Diet Cokes (no Diet Pepsi available!), and read books on our iPads. The Deer Creek State Park lobby is so warm, inviting, and comfortable. It doesn't provide the greatest water hole to look at, but the lobby makes up for it. It also brought back several memories of church workshops and family outings.
And then it was time to drive back into Mt. Sterling for the visitation. We saw numerous deer on the drive which added to a really nice afternoon. When we arrived at the funeral home just a few minutes after the start of visitation, there was no place to park. Sure it's what happens in small towns, but I think it also had a lot to do with the very special woman she was and that her family is. There were tears and there was laughter as family and friends came to comfort and remember. That's what communities do - communities of faith, family and friends - we cry together and we celebrate the well-lived lives of our loved ones.
The 11th chapter of the Gospel of John records the story of an episode in the life of Jesus and his friends Mary, Martha, and Lazarus. The three were siblings and close to one another as well as to Jesus. The only part of this lengthy and theologically inviting text I want to reference in this reflection is that verse often referenced in trivia games as the shortest verse in the Bible - "Jesus wept."
The two sisters had gone to Jesus to inform him that his friend and their brother, Lazarus, was not well. I guess Jesus didn't consider Lazarus' illness to be very serious because he took two more days finishing what he was doing. When they arrived in Bethany, the hometown of the trio, they were informed that Lazarus had been dead for four days and stunk. All of the siblings' friends were grieving with Mary and Martha - including Jesus. His grief was so great, he cried - wept.
It's what we do as a community of supporters/friends/caregivers - we grieve together - we shed tears about our loss, our common pain. And I'm not referencing here only communities of faith. It doesn't matter whether our community is made up of neighbors and friends, a bunch of people we worked with, people from the different towns we've lived in, family members, friends of our loved ones, past or present members of social or recreational groups we met with regularly, or even those who just knew of the deceased because of reputation in the community or world. I cried when Nelson Mandela died. I cried when members of my congregations died. I cried when parents of my high school or college friends died. I shed tears when I was informed of the sudden death of a classmate and then asked to do his memorial service. I mourn every time I hear of the death of another PALS, even if I only knew them as a fellow contributor on our "Living With ALS; for PALS Only" Facebook page.
"Jesus wept." This passage ordains tears as a proper response when we lose a friend or relative. The one who referred to himself as “the resurrection and the life” was sad about losing a friend. It is not a sign of a weak faith or a weak person to grieve. It simply is not true, as some of our faith seem determined to portray, that “real Christians” should only be joyous about everything that happens – that tears should never be shed, because pain is caused by God for our own good (Ugh! Sorry, just ugly untruth). We grieve – we are sad – we weep in the face of death because we are fully human just as our Savior Jesus was fully human. Healthy human beings grieve when painful things happen. Jesus cried because even if death does not speak the last word, it does speak a painful and hard word. The empty tomb is testimony that death is defeated, overcome, but not abolished.
“Jesus wept.” There’s nothing wrong with grief. There’s nothing wrong with shedding tears. It is a part of what it means to be human. It is expected of Christians as it is of all human beings. It’s one of the things we do with one another when someone important to us dies or even suffers.
But communities - all communities again - do something else very important with one another when someone dies. We hold funerals, more commonly and I happen to think appropriately referred to today as memorial services or services of celebration. We get together to remember and celebrate the life of the one who is no longer physically a part of our community. Sometimes we hold these events in funeral homes, sometimes in churches, sometimes in people's homes, sometimes in a favorite park or restaurant or bar, and sometimes in a school or a cemetery. And most of the time our tears are coupled with some cheers. Oh, not "Rah, rah" cheering, but laughter and hugs and words of encouragement and smiles and joy and hope as we remember the good times and the uniqueness of our loved ones - quirks and all. (True, it doesn't always happen. There are those occasions which are just too sad, too painful, too senseless. I don't want to ignore those realities even as I try to paint a picture of what is my most common experience. Please forgive me all those who've experienced such a tragedy in their life.)
When I think of the cheering role of our communities during the time after the death of a loved one, I cannot help but think of the passage in Hebrews (Hebrews 11 & 12) when the author provides this litany of folks who make up the "cloud of witnesses" (Hebrews 12:1) cheering us, encouraging us on our life journeys. I've often described that cloud of witnesses as our cheering section - usually as those who've gone before and play this role in the heavenly realms, but today I'm thinking it's helpful to consider our physical, living, communities who surround us in our day-to-day living.
As a community, we are those who live in the tension of shedding tears and cheering – we live as those who are able to shed tears and cheer at one and the same time – we are those who grieve deeply while deep inside us percolates this joy for the life lived by the one we loved. I think that's what was going on in that funeral home on Wednesday night as those who loved our friend and her family gathered. There were plenty of tears flowing, but there were also some cheers being offered - words of encouragement and hugs and laughter. May we all be mindful of our shared ministry of crying and cheering as we continue on this path of life together.
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