From 2009 – 2011, Our Bodies Ourselves honored the work of women’s health advocates worldwide by asking readers to nominate their favorite women’s health hero. View all nominees by year: 2009, 2010, 2011
Entrant: Kara Marks Valeri
Nominee: Lisa Copen, founder and director, Rest Ministries
I would like to suggest Lisa Copen, who is the founder and director of Rest Ministries, a non-profit organization for the encouragement of people with chronic illness and/or pain. She has done so much to help women with their health problems, as well as supporting men.
I don’t know if her personality has always been so optimistic and tenacious, but it certainly is now, and she has not only dealt w/ her illness and chronic pain admirably, but is also trying so hard to inspire others while working through the midst of her own physical pain and sometimes fog of her rheumatoid arthritis and fibromyalgia.
We w/ chronic and often invisible illnesses deal w/ so much that others don’t recognize, understand, empathize w/ or even agree with. We often end up having depression to go along w/ our chronic pain and/or chronic illness and although I know that Lisa occasionally gets discouraged like we all do, healthy or not, I’ve never seen her be anything but positive. I know that her faith in God comforts her and that she benefits from helping others, but there is something in her that is so inherently choosing to look at the positive part of illness, looking for blessings in the midst of burdens and discouragement, etc.
I was first exposed to Rest Ministries by receiving email forwards of the free daily devotional in some yahoogroups. There are a lot of email devotionals we can choose to receive every day from various websites, but the RM ones are special because they’re written by people w/ chronic illness and/or pain, so they seem to speak more specifically to the things we deal w/ on a daily basis. Lisa used to write all the devotionals herself, but there is now a volunteer writing staff as well as many volunteers for the various areas of the ministry. When I would read the devotionals, I would be so uplifted and I felt so blessed just learning a little bit about Rest Ministries–I definitely knew that there was a big need for this type of ministry.
I started helping with Rest Ministries almost 5 yrs. ago when Lisa sent an email through the devotional mailing that she was looking for someone to check the voicemail, take messages, return calls as necessary, answer questions, help w/ orders, etc. Since I’m not able to work as an RN anymore, this is something I can do to feel that I can be of some help, and it’s been such a blessing to me.
First, Lisa is a total inspiration. She was diagnosed w/ rheumatoid arthritis in her mid-20s and saw the need for support for people w/ illness, especially Christian support. She had been well-equipped to start a ministry of this sort as she was completing her degree in social work and doing an internship for a non-profit, as I understand it, so she prayed for a yr. about starting a ministry such as Rest Ministries and did establish it in 1997. She started w/ an in-person support group, then I believe they began connecting via both a newsletter (now a magazine instead) and email and then Lisa initiated the website, www.restministries.org. She was able to learn all the programming for the initial simple website and her skills have really grown, since the site is always being updated and looks very professional and she’s still able to do all of that programming herself.
The ministry has grown so much from where it started, to now having about 300 in-person support groups called HopeKeepers groups around the nation and even in other countries; the site also has a lot of online information and support, such as online support groups, a message board/chat room called the Sunroom (http://restministriessunroom.ning.com/); many articles and links; a radio show twice a wk. (http://www.blogtalkradio.com/hopeendures); a weekly free ezine; the free daily devotional I mentioned; and HopeKeeper’s magazine, which is presently going digital, but she does hope it’s able to return to paper-printed format in the future.
In 1992, Lisa also started an Invisible Illness wk. every Sept. since the mo. of Sept is Chronic Illness mo. nationwide. The site is http://www.restministries.org/invisibleillness/invisibleillnesshome.htm and still has information from this past Sept.–she’ll be updating that soon w/ this yr.’s logo, slogan, information, etc. (this yr.’s is Sept. 14-20.) The theme for Invisible Illness Week 2008 was “Hope Can Grow Through The Soil of Illness.” Each yr. our ministry promotes this major public awareness campaign and it’s a designated time during which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.
It’s a grassroots campaign to help spread the word that those with illness may look great, but are hurting and need love and understanding. We have several presentations a day from guests on a variety of topics, both spiritual and practical. (Starting last yr. and in the future the talks will be by blogtalkradio.com; previously they were chats in our chatroom. It’s great to have those past sessions archived for people to listen to in the future or to be able to download onto their IPods; our twice-weekly shows are also archived.)
About Lisa — she is 40 yrs. old, married for about 10-15 yrs., I believe, and she and her husband adopted their son Josh as a baby 6 yrs. ago. She lives in Poway, CA, a suburb of San Diego, so the ministry’s address is in San Diego even though it’s very much a nationwide and mainly online ministry. I’ve never been able to meet Lisa in person, but between lots of emails and talking on the phone a few times a mo., I feel very close to her. All of us touched by RM are dealing w/ different illnesses, and even when we have the same illness, we are affected in different ways and to different degrees. We do have so much in common when we’re dealing w/ our various illnesses, though.
Rest Ministries really tries to make the magazine, groups and other forms of support encompass a wide range of issues that speak to people dealing w/ a wide range of conditions. It is from a Christian perspective, but Lisa tries really hard for it not to be too “preachy,” and we want people of any faith (or no faith) to be comfortable receiving encouragement and information. There are quite a few Jewish people and other non-Christians who do benefit from the ministry, I know.
I have MS and even though it sounds like in many ways Lisa is more physically affected by her illnesses than I am, she somehow manages to be very active — much more active than I’m able to be, despite the fact that my MS is actually much milder than it is for many w/ MS. My boys are older teenagers and don’t need as much physical care, but her “baby” is now 6 and she’s a very active work-at-home mom who has to do much more physically in taking care of and occupying her son. She also manages to get out of the house almost every day even when very ill, whereas I, like so many others w/ chronic illness, am at home so much more. (This is one reason why the online encouragement from the ministry is so helpful to people.) Lisa also puts forth a lot of effort in maintaining her marriage and being a supportive wife–marriages are much more likely to fail when they are touched by chronic illness and Lisa seems determined to keep her husband and marriage a priority despite her limited resources of time and energy.
In addition to Lisa’s physical pain and fatigue and probably a lot more physical problems than I know, she has a lot of trouble w/ her hands, fingers, wrists, shoulders, neck, feet, and ankles. There is so much swelling and damage that some deformities have evidently started and the edema (swelling) of her feet became so bad last fall (she was off her meds trying to prepare for hand surgery, which she still now isn’t well enough to have!) that a foot wound began and despite really good wound care from a clinic and at home, she developed the flesh-eating bacteria in that wound, had to be hospitalized for a wk. on IV antibiotics and then receive them at home by IV for about 3-4 wks.
She is very blessed that she didn’t lose her foot, her leg or even her life — that’s how serious that bacteria can be. The wound is still not 100% healed, but hopefully she will heal enough to be able to have the surgery and be able to go back on her medications. (She said that she’s really glad that her laptop couldn’t access the internet while in the hospital or she would have been even more frightened than she already was–that was actually her first hospitalization other than outpatient surgery.)
Lisa’s attitude toward healing is I think part of what keeps her so positive. If you’re interested at all in our viewpoint on healing, it is addressed very well and scripturally at the website, and it can be a controversial topic. This is actually one of the reasons many people w/ chronic illness and pain become discouraged and hurt. Some of course become angry and bitter that they’re not healed by God, but what is so very hurtful can be the responses from other people. Sometimes those in the church will tell people that they were prayed for, so they should be healed, so if they’re not, it’s because they don’t have enough faith or they have unconfessed sin.
Some churches seem to feel that Christians shouldn’t become depressed or even that all illness is spiritual attack and therefore there’s something that those w/ illness are or are not doing that is causing their problems. Lack of understanding from not only other Christians but also from family, friends, employers, co-workers and strangers can be very hurtful. People often are actually trying to be helpful but still say things that hurt–or they want you to go to this dr. or try this treatment. (Sometimes they are marketing “cures” also.) I agree w/ Lisa that we’ll all be healed–it just might not be until we’re in heaven!
Lisa has written several books and is always working on new projects. She has written Mosaic Moments: Devotionals for the Chronically Ill, which is a collection of devotionals, about half written by her and about half collected from volunteers–it’s really “the best of the best.” Many people, myself included, have been really ministered to by her book, Why Can’t I Make People Understand? It’s not about how you can *make* other people understand, but about how they’re *not* going to understand (no one in your life is going to understand 100% except for God — he’s the only One who will never let you down.)
We have to learn how to be OK w/ people not totally understanding or even not understanding at all. She has written two Bible studies that are often used by HopeKeeper’s groups, and individuals are also often interested in them. She has written So You Want to Start a Chronic Illness/Pain Ministry for those considering starting a local in-person support group. There is also a wonderful small book she created, called Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, which has gotten a lot of good feedback from churches and individuals. Often churches are good about ministering to those w/ acute illness, like they come home from the hospital and have meals provided.
But most churches have no ministry for those w/ ongoing illness and we try really hard to raise awareness of the need for that. I found the book really helpful for suggestions on how to help my sister long-distance while she’s been getting chemotherapy for her Stage 4 ovarian cancer — another very positive woman if you’re interviewing several with illness! Lisa has also written some other things about book marketing, promoting websites, adoption scrapbooking, etc. I can’t keep up w/ all that she does!
Lisa is totally a volunteer for the ministry, basically full-time, if you consider the no. of hrs. she puts towards Rest Ministries per wk., and receives no payment for even book profits — everything is put back into the ministry. If the ministry is in the red, which it often is, as are many ministries these days, she and her husband keep the ministry going. Lisa physically receives all the online and mail orders from our non-profit store and I send a few phone orders to her, and until about 6 mo. ago she was the one who filled the orders, packed them for mailing, and got them mailed virtually every day.
We did recently start having a Christian company physically pack and mail the orders for a small fee, but there are ongoing things she must do every day by computer to keep the orders arriving and the ministry going, whether she’s feeling like it or not and whether her hands are hurting her or not. She often doesn’t sleep well and is somehow one of those people who is able to work despite physical pain and use that time to get things done–she’s always writing something new, organizing and brainstorming new things. She is so knowledgeable and inspired and God has given her so many abilities to help this ministry grow.
I don’t know how many “well” moms could do all that Lisa does, let alone see how Lisa does it, dealing w/ so much illness. Most of the people we deal w/ are very nice, but many of us aren’t at our best when we’re not feeling well, so I know that she does sometimes get really discouraging emails. She’s always able to stay so positive and give encouragement to others or to smooth things over if someone’s upset about something, whether we’ve somehow disappointed them or something in their life is overwhelming them.
But sometimes the kind of help they’re needing is something we don’t do: they’re having desperate financial trouble; they have no one locally to help them physically or emotionally; they’re having trouble w/ drs. — finding the right one, finding an empathetic one or affording medical treatment at all; they can’t get pain relief no matter what they try; they want someone to call in the middle of the night when they’re hurting and discouraged; they’re desperately lonely, depressed or suicidal. We don’t have every possible resource available yet to people dealing w/ pain and chronic illness, but we fill a great void in providing not just support, but Christian support and we do try to point them in the direction of getting whatever help they’re needing.
I just want to close w/ saying that I’ve learned to view having a chronic illness as a blessing and Lisa and her ministry have both helped w/ that. I know that not everyone can say that, but I truly wouldn’t change it, because it’s helped me grow spiritually. I’ve gone into all of this to show how much this ministry is needed and what a blessing Lisa has been to all of those living w/ chronic illness and/or pain, male or female, and how very positive she’s been able to stay.
There are so many people I have met in my life and through this ministry by whom I am greatly inspired, but Lisa Copen would definitely be the one by whom I’m *most* inspired! She has been able to do great things w/ her life despite the struggles and challenges she’s been given. She’s been able to use the talents God gave to her and she has touched the lives of so many through Rest Ministries.