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Miracle House: Temporary N.Y. Housing for People With Life-Threatening Diseases

Interview With Suzanne Keller, Director of Client Services, Miracle House, New York

March 2005

WP4P: A bit of the history of the organization, in terms of when did you guys start? What was the motivation? How did you start?

Ms. Keller: Miracle House was started in the early 90's out of the AIDS crisis. A group of friends here in New York were realizing that so many of their friends who were very sick and dying at the time, were hospitalized, that their families needed to come in to be with them. They realized that there was no place for all of these families that were coming in to stay, and they were all sort of taking turns in housing their friends' parents or siblings or friends from out of town, while their friends were in the hospital. At some point, in this small group of friends, they said, There must be an organization out there that does something like this. And they did the research around the city and in no time at all they found out that in fact there was nothing. So really out of that sort of kitchen table conversation amongst a group of friends just trying to help their friend's families out, they said, Well I think it's time that we start something. They saw too many of their friends dying, too many of their friends' families not being able to come in, because they couldn't afford expensive hotels. They couldn't stay in their children's apartments, because they were small studio apartments. So really, out of the height of AIDS crisis Miracle House was born.

It started with one small studio apartment. That's all, of course, we could afford and had funding for, and we were only able to house one family at a time. In the beginning that was okay, because that's all we had money for and that's all we had the resources for. Very quickly, though, once this small group of people formed the agency as an official 501(c)(3) agency we started having fundraisers and, of course, getting more funding, and the idea really took off. Very soon we rented our first, a three-bedroom apartment, in the current building that we're in now. We were able suddenly to house three families. Over the years as the funding grew we kept adding different apartments. But to back the history up slightly, in the beginning we were strictly housing caregivers of people living with AIDS, people coming to visit loved ones. As the years went on and the AIDS crisis became a little bit less of a crisis, when that immediate emergency need of rushing to a loved one's bedside was somewhat in our past as AIDS became a more ...

WP4P: Somewhat diminished.

Ms. Keller: Right. As AIDS became more of a manageable condition than it was in the mid-80's and early 90's, we found of course that our need for our services were diminishing as well. Many AIDS organizations in New York City at that point were closing up shop, as they didn't have the clients they had had in the earlier days, but for us we thought, We do this great service for people in need, what a shame it would be to shut the door; and we realized how seamless it would be to expand the mission so we would always be there no matter where the AIDS crisis went in the future, and we could in the interim be there for other people who needed us. So it was about the mid-90's that we expanded services to families dealing with cancer.

WP4P: I've got this '95, '96?

Ms. Keller: Well, it was actually '96.

WP4P: Just to take you back, when you first started, was that, what, '93?

Ms. Keller: It was '91. 1991. The idea was forming in 1990 amongst this group of friends, but by the time the agency actually became a true agency and we were getting funding for it, it was 1991 the year that we opened our doors. When we expanded our services, of course, more funding came to us, because we were able to reach out to places that we weren't able to reach out to before in the line of cancer, and we actually found that while we were trying to do the same mission -- housing people who were coming to visit loved ones living with cancer in New York -- that really wasn't the need. What we discovered was that the need was people were coming to New York for specialized treatments, coming to New York City where there was so many wonderful hospitals and doctors who were doing cutting edge technology for cancer treatment, that the need was more so for people coming together -- the caregiver and the patient -- for surgeries and treatment. So at that point we expanded services again to not house a caregiver coming to visit a loved one living with cancer, but to house the cancer patient and ...

WP4P: ... the actual patient.

Ms. Keller: Right. And the patient who was doing well, not the patient who was in dire need. We never wanted to be a sort of a medical institution or any type of... medical care is never provided at Miracle House. So it's always the patient who's doing a little bit better than the average patient. In the beginning we were concerned how that transition would be, how people dealing with AIDS and people dealing with cancer would mix and deal with their issues; and our concerns were immediately diminished when the very first families, you know, it didn't matter if it was AIDS or cancer, whatever disease it was, the families were all facing crisis together, facing a loved one's illness no matter what it was, and people were bonding just as beautifully as they were when it was strictly an HIV organization, and that certainly made us very proud of the work we were doing.

WP4P: That was one of the questions I had here, you know, after you had expanded your service. I certainly know, being both HIV-infected since before 1985 and now dealing with cancer, and also being co-infected with Hepatitis C; there's been a lot of misinformation, misunderstanding, and even to some extent judgmentalism, on the part of certain communities who may say that... to move it away from AIDS, but to say that, Okay, you smoked all your life, so too bad you got cancer... lung cancer, or whatever. Or, you have HIV and AIDS; too bad, it's... you're receiving judgment here on earth for behaviors that you may have engaged in. So you didn't experience a lot of that? Did you experience any of that when you kind of mixed populations?

Ms. Keller: We had thought in the beginning that we would. We didn't think that families who had never dealt with AIDS... and in the beginning, at least in our experience from Miracle House, the majority of the people that are sort of "AIDS families", were people like mothers and fathers coming to visit their gay sons. That was the majority at that time, the people who were infected with AIDS, at least in New York City. So we were really concerned about whether the judgments would be present, and we really found that it wasn't and people were just willing to be supportive of other people in crisis. I think that in some small little way we might have helped a lot of people who perhaps had misconceptions about what it mean to be infected with HIV/AIDS was really about. I think we really, you know, in some small little way perhaps we helped a lot of people, you know, change their opinion.

WP4P: Yeah. Essentially the only common denominator is whether it's cancer or AIDS or --

Ms. Keller: Or whatever you call it.

WP4P: -- or some other life-threatening condition, the only common denominator is that we're all human beings.

Ms. Keller: Absolutely. Absolutely. I always say that our guests teach me more about life than anybody. And they were extremely, and continue to be, supportive of one another no matter what the condition was. Now, certainly I don't know whether there was ever any inner thoughts that these people were having with, you know, tussling with it in their own mind, but certainly none that ever arose. No family ever asked not to be in one apartment. No family ever was not compassionate, outwardly compassionate to another family given whatever situation they had. There's something about the environment of Miracle House that I think makes everyone just sort of understand that everyone's facing similar crisis and they're all here for a loved one, and they understand how heart wrenching or difficult or just how hard it can be on a family, and that's what they focus on.

WP4P: Aside from your client population, your funders, those people that supported you philanthropically, when you went into your expansion, did you lose some funders because of the expansion? Did you gain some funders because of the expansion?

Ms. Keller: Again, that was a concern of ours as well, and no, we did not, because we were still housing people with AIDS, family members of people with AIDS, as we still do now. So the AIDS funders were more than happy to help us keep going, because they saw so many organizations closing up shop and here we were saying we're going to stay strong no matter where the AIDS crisis goes. A lot of our AIDS funders were encouraged that we were expanding our services. They were happy to see that we were staying around. They obviously loved our agency as they have been funding us for many years, and I think would have been disappointed if we had closed shop. So we did not lose any funders at that point. And of course we only gained funders as people who provided funds for cancer organizations hopped on board, and they certainly didn't have any hesitation in funding an organization that was also housing people with AIDS.

WP4P: In other words... did you, like pharmaceutical companies... not pharmaceutical, but say tobacco companies or something. Did they have a problem with you getting into the cancer business?

Ms. Keller: No, in fact Philip Morris was one of our supporters, which we always sort of felt was ironic, but you know they have done a lot over the years to be supportive.

WP4P: To help their image.

Ms. Keller: Right, exactly. Exactly. For whatever reason, they help fund us and we were more than happy to accept their generosity.

WP4P: Besides the housing, you're General Director of Client Services. What other types of services or referrals can you help people with, or do you help people with?

Ms. Keller: We try to be as helpful as we possibly can, from the small things to helping families who have never been in New York City get around town, which is sometimes more of a concern to people than actually coming here and facing surgery. They have more fears about New York sometimes than they do about the treatment they're going to receive. We understand that. We have a strong team of volunteers who help our guests do everything from negotiating the subway system, the bus lines, showing them where the grocery store is if they're going to be here for a long length of time, other amenities that they may need. If the family's feeling up to it we're happy to even give tours of New York, show them the fun side of New York instead of the just the hospital. Those are the practical things that we try to do for our guests. The more pertinent matters, we are happy to refer people to support groups that happen throughout the city, whether it's American Cancer Society, Cancer Care, different AIDS organizations that have support groups. We provide a lot of... we refer a lot, excuse me, of people to a wonderful organization called Gilda's Club, made possible by Gilda Radner's foundation, the comedienne who died of cancer, and they're sort of in our neighborhood and they have wonderful support groups daily. Our two organizations, we feel very close to each other because we sort of feel like we have the same mission in helping; it's not just helping the patient, we're helping the caregiver as well. So a lot of our families, our guests, have gone over to Gilda's Club throughout the day to get support from them.

We also refer our guests to services that are... can be very helpful in financing their trip to New York by providing a referral to a wonderful organization called God's Love We Deliver; and very much like us, they started off strictly as an AIDS organization providing meals to homebound people living with AIDS.

WP4P: Yes, we were talking earlier about God's Love We Deliver.

Ms. Keller: Right. God's Love We Deliver, they very much like us started off as an AIDS service agency, and just like us when the AIDS crisis became a little bit less of a crisis, not as many client were making... they weren't making as many runs as they were making before, and they expanded their services to cancer and other life-threatening illnesses as well. Actually, when they did that they called us to sort of figure out how we did it and sort of asked us questions. So we're proud of that fact. Anyhow, we do use their agency, which we find provides wonderful, delicious, nutritious --

WP4P: They're actually delivering to me now.

Ms. Keller: So you know about them and how wonderful they are. And the meals are pretty good, aren't they?

WP4P: Right. Yeah. I had been familiar with them prior to my leaving New York. Yeah, and I remember initially they were sort of an HIV/AIDS organization.

Ms. Keller: So a lot of our guests use their services and I'm always happy to refer people to them. We think it's wonderful that they provide to our guests, because our guests are really not New Yorkers and are here just temporarily, so we're very grateful to God's Love for doing that for us. And as for feeding our caregivers, too, which we think is remarkable, because it's really not part of their ... mission, but they know that these people are from out of town and it will just make it easier for them. So we're very grateful to them and I'm always happy to refer.

We also provide a breakfast every morning, 365 days of the year at 8 o'clock on the weekdays and 9 o'clock on the weekends, where a different volunteer comes by every morning to the building at Miracle House and takes all the guests staying to a diner right across the street from the facility. And all the different families from the five apartments can meet each other, get to know each other, be supportive, helpful. A volunteer is there to help them get on their way to the subway, to their bus, answer questions. The families share information about doctors, about treatment plans; and whether they're talking about their medical condition or the weather, it's always a very warm friendly support group.

WP4P: It's less isolating.

Ms. Keller: Absolutely. And staying at a hotel or being by yourself... it's just a good way, I think, to start the day, just being amongst people who truly, honestly care about what you're going through. It's always sweet when, you know, one family doesn't come out, come down one morning and all the rest of the people are used to seeing that family; everyone sort of goes upstairs, and what happened to Bob and Joe this morning, and look for everybody. I always find that very sweet. And then we do the same thing twice a week for dinner, on Tuesdays and Thursdays, and we're trying to expand that program as well. We just need more funding to be able to provide more dinners.

WP4P: That kind of brings me to two other questions. My being a guest at Miracle House at this point. One is, I find certainly your services have been a godsend to me, because I wasn't able to afford staying here for any length of time and I know I'm going to have to come back for extended periods for chemo and radiation, in addition to this recent surgery, but one of my biggest concerns is the first time we came out we drove out from Wyoming. It's a long road trip. The second time, because, you know, I'm in a fortunate enough position to receive sponsorship to cover these scientific meetings for HIV and AIDS or international meetings, you know I sometimes build up some frequent flyer miles that'll get me to and from. So, now consequently we've used up our frequent flyer miles, my wife and I, getting here, and we had to use them on two different airlines, and it was a bit complicated. Do you, at this point or in the future, do you see yourself being able to perhaps not assist clients with transportation, but refer them to places that might be able to assist them?

Ms. Keller: We currently do provide information on places that may assist them. Some of the Angel Flight Network and ...

WP4P: In terms of major airlines?

Ms. Keller: Major airlines, no, but there's a few private nonprofit organizations that help fly, private pilots that help fly patients from city to city, and I often refer people to those small airlines. They help many of our families get here. As far as funding to get people here on their own, that's an expense that we're unable to --

WP4P: It's kind of beyond your pocketbook.

Ms. Keller: It is. It is. But once people are here, though, if there are cases where the family suddenly finds that they're needing to stay much longer than they had and their finances are running low, we are more than happy to ... we have an emergency fund for families such as that. Or we make sure that they're at least getting three good meals a day, that they're able to get to and from their treatments. We make sure that the essentials are always taken care of for that. We've even at times, when people can't afford to stay with us, if their treatment goes longer than expected, we're more than happy to lower the cost of their stay, or sometimes altogether just drop the cost if things are extremely tight with finances. We never want Miracle House to become more of a burden for any family. We're here to make things easier during a difficult time, and it's out pleasure to tell a family, If you can't afford to pay, it's all right. The majority of our funding doesn't come from the guest fees anyhow, so we're more than happy to just make it easy for the families. That's what we're about. We don't want to be the one more difficult thing in a year's worth of difficulties for this family.

WP4P: I have one final question. In terms of people who may be interested in supporting Miracle House, either as a volunteer, either as a financial or philanthropic contributor, what can they do? How can, say, a volunteer go about volunteering? If someone wants to do a living trust, if someone wants to write you into their estate, do you --

Ms. Keller: We'd be more than happy.


Ms. Keller: Well volunteering actually is very easy to do at Miracle House, thanks to the Internet. We have volunteer applications that appear on our web site. Our Volunteer Director is always available to recommend and help a volunteer choose the activities that would best suit their needs. We have volunteers that not only volunteer directly with families, but with fundraisers, with special projects here in the office. There's a wide range of activities that a volunteer can participate in other than just greeting families. As far as funding, we always encourage, as you just mentioned, whether it's someone's estate or in their Will ... in our newsletter we have a section where, if you're interested in that, you can --

WP4P: In major gifts --

Ms. Keller: Major gifts, right. You can contact our Development person. And our Development Director, as well as our Executive Director, are the people who write our grants and do research on foundations and corporations who provide funds to organizations such as ourselves.

WP4P: Do you go after pharmaceutical money by any chance?

Ms. Keller: We have. If you want a more detailed answer to that I can have you speak to our Development person.

WP4P: The reason I ask is because, you know, I'm certainly very dependent on a lot of the pharmaceutical money, in addition to foundation money, and the reason I ask is because I know a number of pharmaceutical representatives go to our web site and take a look. And if it would be something that would drop down and come to you and be of some help and assistance, hey I think it would be a great thing.

Ms. Keller: Right. Absolutely.

WP4P: So that's why I kind of mention pharmaceuticals.

Ms. Keller: I think that we have. I'm just not, in the position that I'm in, aware as to all the corporations --

WP4P: Ins and outs of the development side.

Ms. Keller: -- the corporations that give to us, but I know that that's something that is sought after. If you'd like you can certainly... the person, she'll be back in a moment, and she can answer that in quite detail for you.

WP4P: I think this will ... anybody who reads this on our web site, if it's a pharmaceutical company or a foundation or an individual --

Ms. Keller: We encourage them to write a big check.

WP4P: Right. Well yeah.

Ms. Keller: And the more zeros the better.

WP4P: Exactly. I agree with you. Well listen, Suzanne, thank you very much for your time.

Ms. Keller: Oh you're so welcome.

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This article was provided by Wyoming: Positives for Positives.