Mar
02
2010
by Matthew Ellis   |   comments
<h1><a href="/blog/the-face-of-illness">The Face of Illness</a></h1>

I love Roger Ebert. He has had a profound influence on the way I consume and interact with media. He is almost solely responsible for my love of film, introducing me to the great films and directors of all time through both his written reviews and his television work. He not only created an awareness about these great movies, but taught me why they are important and how to watch them. As he's often said, "A movie is not about what it is about. It is about how it is about it."

Visible Illness

In our previous blog post, John Miers talked about the difference between visible and invisible disabilities. Roger Ebert refuses to spend his final days hiding from the world, ashamed that he no longer looks as 'normal' as he once did: "When I turned to it in the magazine, I got a jolt from the full-page photograph of my jaw drooping. Not a lovely sight. But then I am not a lovely sight, and in a moment I thought, well, what the hell. It's just as well it's out there. That's how I look, after all." 

It is rare to find such honesty and acceptance from anyone in today's world, let alone a celebrity. Visible illness or disability is often hidden in our society. What will people think? Will we make others uncomfortable? Will we be uncomfortable? Ebert has considered these questions and decided it doesn't matter. He still has his life and he's going to live it.

Nil By Mouth

For nights I would wake up already focused on that small but heavy glass mug with the ice sliding from it, and the first sip of root beer. I took that sip over and over. The ice slid down across my fingers again and again. But never again.

If you're not reading Roger Ebert's Journal, I cannot recommend it highly enough. He is thoughtful, insightful, and witty on a wide variety of topics, many of which have nothing to do with the world of film. His essays arguing for health care reform here, here, and here are some of the most cogent arguments I have read about the moral imperative to take care of each other. His recent reflection entitled 'Nil By Mouth' on the consequences of no longer being able to eat, drink, or talk is heartbreaking and inspiring. I can't remember anything I've read recently that's affected me more.

Ebert on Oprah

Today, Ebert will appear on Oprah to discuss his Oscar picks. He will use a computer-generated voice. There will be nowhere to hide and everyone will see the toll his recent illness has taken on his body. His appearance will be jarring to many and some may even privately think he shouldn't be out there like that (though they wouldn't dare say this aloud). Ebert, for his part, will enjoy the visit with his old friend immensely.

Matthew Ellis serves as executive director of National Episcopal Health Ministries (NEHM).

Mar
01
2010
by   |   comments
<h1><a href="/blog/visible-or-invisible">Visible and Invisible</a></h1>

If someone asks you “what are the major types of disabilities?” there may be quite a discussion, with answers like “intellectual, psychiatric, physical, and sensory,” but I contend that there are only two major types of disabilities: visible and invisible. All of the major disabilities will fall into one or other of these two.

I have had an invisible disability for over 50 years that has had major effects on my life. I don’t drive, so I need to obtain transportation to go to most meetings, etc. I don’t drink, but not for the reasons people may assume. Early in my career, I had problems with public speaking, but changes in my medications have helped.

A Visible Disability

Five years ago, I acquired a visible disability as well. It has been fascinating, interesting, and telling to see the change in how others have treated me since this has occurred. Of course, I also need to keep check on how I may be responding to others since this has occurred….how we react to each other is a two-way street.

The visible disability deals with my eyesight. Since my eyes don’t work together any more, I use a frosted lens over one eye to avoid seeing two of everything. I don’t need the often-thought-of accessibility aids, such as a wheelchair, a ramp, a large print bulletin, an interpreter, or even an assistant. I can still sing in the choir, read the lessons, serve on committees and attend worship services.

It is fascinating – and sometimes embarrassing - to see how people “flutter” to ask what I need, to assure me that they will help, to ensure that I have a good experience in the church, or sometimes even pretend that they don’t see anything “different.”

I wonder what they were thinking five years ago, when I was simply “there.”

Why the different reactions?

What is the key to this? Why does this happen? The answer is found in our attitudes towards each other. These are the ongoing, constant automatic sensitivities of persons towards others. A person’s attitude towards other people is directly related to their knowledge about the situations of others, and their own comfort level concerning uncertainty.

What do we need to deal with this? Education – for all, right from the very beginning. Sure, some accommodations may also be needed, and they may take some planning and perhaps may cost something. But of all the types of accommodations, changing attitudes is the least expensive, yet the most difficult, to deal with.

The goal is to allow someone to be “simply there.” Everyone should be “fluttered over” – or no one should need to be. Each church should be ready to ensure that every person has a good experience at their services and other activities.

I remember being told that “this church doesn’t need ramps; we don’t have anyone who uses a wheelchair.” Ouch!

“Truly I tell you, just as you did not do it to one of the least of these, you did not do it to me.”

For a listing of Educational Leaflets on disability concerns, click here. You can also visit the Episcopal Disability Network here for additional resources.

John Miers is from Bethesda, Maryland, where he was employed at the National Institutes of Health from 1968 to 2005. He served on the board of St. Luke’s House, a halfway house for persons recovering from mental illness and also serves as both the Jubilee Officer and a member of the Diocesan Council for the Diocese of Washington. He was a member of National Commission on Science, Technology and Faith for the Episcopal Church and is active in his local church, where he is in the choir, worship committee, pastoral care committee, and the prayer team, and he also visits patients in a local hospital on behalf of the Chaplain.

Feb
24
2010
by Matthew Ellis   |   comments

Health care reform has not been easy. It's a complicated area of policy that impacts billions (if not trillions) of dollars. Certainly, there are legitimate arguments for and against nearly every aspect of each proposal that stem from basic philosophical differences on the role of government in our society. In addition to these legitimate arguments, the process has been further complicated by the mudslinging that is perhaps inevitable with so much money at stake. 

Accessing Relevant Information

How to wade through all the information out there? Some of it is well-intentioned, while some of it intends to deliberately distort the facts. We've linked to the Kaiser Family Foundation's analysis in our Resources section for some time now, but with the televised summit drawing near, it seems appropriate to highlight this comparison of the current proposals.

You can access the side-by-side comparison of the House bill, Senate bill, and President  Obama's recent proposal here.

See more information at http://healthreform.kff.org/, which also includes all the Foundation’s research, analysis and polling on health reform issues; columns by Kaiser President and CEO Drew Altman; and news summaries from Kaiser Health News, an editorially independent news service established by the Foundation.

Thursday's summit will be carried live in its entirety at WhiteHouse.gov/live.

Feb
23
2010
by Matthew Ellis   |   comments
<h1><a href="/blog/national-week-of-prayer-for-the-healing-of-aids">National Week of Prayer for the Healing of AIDS</a></h1>

See the Presiding Bishop's letter about the National Week of Prayer for the Healing of AIDS here.

The National Week of Prayer for the Healing of AIDS is a call to prayer for the eradication of HIV/AIDS through prayer, education, advocacy and service. It is the coming together of all people of faith to unite with purpose, compassion and hope to do the following:

  • Educate every American about AIDS facts;
  • Encourage and support HIV Testing;
  • Advocate for the availability of compassionate care and treatment for all those living with the disease in every community in America and
  • Love, unconditionally, every person living with and affected by HIV/AIDS.

Here are just some of the resources at the National Week of Prayer for the Healing of AIDS toolkit website:

  • Campaign Planning Guide
  • Liturgical Resources
  • Campaign Media Resources Guide
  • AIDS Facts

How will you participate in this important week of prayer?

The National Week of Prayer for the Healing of AIDS is March 7-13, 2010 and is coordinated by the Balm in Gilead, Inc.

Feb
08
2010
by The Very Rev. Ward Simpson   |   comments
<h1><a href="/blog/health-ministry-in-action-at-general-convention">Health Ministry in Action at General Convention</a></h1>

In November of 2009 I suffered a branch artery occlusion that caused an eyebrow shaped blind spot in the vision field of my right eye. Although I had no other symptoms, I was wise enough to immediately seek medical attention. When they checked my blood pressure at the doctor’s office it was high enough that everyone started using very calm and soothing voices. Although I had no previous symptoms, was very physically active, and ate a generally healthy diet, I was diagnosed with high blood pressure in the range of severe stage 3 to very severe stage 4. I was placed on medications that evening and, together with some lifestyle changes, I now have my blood pressure under control. Thankfully, I have recovered nearly all of my vision but will have to monitor my blood pressure the rest of my life.

As with many people, stress is a key factor in my blood pressure. At General Convention in Anaheim I was privileged to serve as secretary to the Committee on Dispatch of Business. As you can imagine, this is not a low stress commitment. I knew going into this that I would need to monitor my blood pressure carefully. I was happy to find National Episcopal Health Ministries and the Episcopal Church Medical Trust shared a booth in the Exhibit Hall where they offered free blood pressure checks and 10 minute massages. At my first check with them we discovered that my pressure was slightly elevated. When it was still up the next day they strongly suggested that I contact my doctor.

Following an email exchange, he prescribed an adjustment to my medication for the duration of General Convention and instructed me to continue daily pressure checks until I was able to get into the office to see him. This adjustment worked and my pressure remained under control for the duration of my time in California. Between the massages, the pressure checks and, in my opinion, the best tasting drinking water at the convention, NEHM and the Medical Trust's volunteers took great care of me and kept me healthy through the long grind of General Convention.

From one deputy who needed care, to the volunteers who staffed the booth, gave the massages, and those generous hearts that helped fund it, thank you! Your caring ministry enabled me to focus on the work of General Convention confident that I was not risking my health to do it.

The Very Rev. Ward Simpson became Dean of Calvary Cathedral in Sioux Falls, South Dakota on October 1, 2009. You can learn more about his work at www.calvarycathedral.net.