This week I had a nice chat with my good friend Catherine. We met four years ago when we served in AmeriCorps together. Since then, Catherine has been through some struggles but her spirit remains strong. I’m proud to call her a friend. She discusses everything from living life with lupus to homelessness to how dresses empower her.
Name: Catherine Daniels
Age: 47
Location: Living in Cincinnati, originally from Buffalo
Describe to me where you are in life right now?
Well I am 47-years-old and I’ve done a lot of things. I’ve had a lot of career changes but because of my health, I’ve had to re-evaluate what I wanted to do with my life. Where I am right now is trying to figure out whether I’m going to be very passive about my illness or if I’m going to use my illness to help other people. So right now I’m just kind of researching around. I want to start my own non-profit that’s centered around families that are homeless and craft therapy. With my lupus, I want to find ways to help people relax and enjoy, and try to work through their illness. My doctors suggested a long time ago that crafts or writing are a good way to adjust with your illness. So that’s something I want to do.
Can you describe what happens to you when you have lupus? I don’t know as much as I probably should. What’s each day like?
Lupus is an autoimmune condition. There is no cure for it but you can find a way to live with it. Everybody has a different experience with lupus. Your white blood cells are fighting off the red blood cells in your body, which means you don’t have any protection. Your immune system is kind of working against you. So with lupus, sometimes it’s extreme fatigue. Sometimes it’s a lot of pain throughout your body. It’s like an extreme arthritis. It reacts differently with different people. With mine, it was kind of strange. It’s gotten worse over the years with me. When I first was diagnosed with lupus, it was a lot of kind of strange pain. It was almost an immediate diagnosis. I’ve learned how to create ways to work around my lupus. I can’t do the things I used to be able to do, but I can find new things to do to offset some of the pain. There’s a lot of medication involved. But if you’re creative, you can find some holistic ways to deal with it. It’s the anti-hug condition. When you have lupus and fibromyalgia like I do, it’s kind of hard for people to hug you sometimes because it’s a lot of wide-spread pain. It’s trying, it’s difficult, but I’m here and I’m working around it.
When were you first told you had lupus?
I was diagnosed in 2004 back in Buffalo. I woke up one morning and my hands were really, really irritated. They were very red and they felt like they were burned. So I told my husband about it and he took me to the doctor’s. Upon seeing my hands, the doctors knew exactly what was going on. It was an easy diagnosis. It was a little rougher for me because people like to say “oh you have lupus! You’re going to die!” Instead of “Oh you have lupus? How are you going to work around it?” It was a little discouraging at first, but it’s not the death sentence that people try to pretend it is.
So you feel like a lot of people in your life were assuming the worst when they found out you had it?
Absolutely. You’d be surprised. When people find out you have an illness, people automatically are like “Oh I had a cousin with that or my next door neighbor had that and they died.” And before that you’ve never heard of these people in your life. So it was a little terrifying at first. You didn’t want to tell people you had this illness because people were so negative. So you kind of kept it to yourself. As time went by, I just stopped saying I had lupus and just said I didn’t feel well that day. I was a beautician when I found out and I had to retire because my job relied on my hands. A lot of my clientele were like “why did you stop doing hair?” And I had to tell them. It was rough. It was really, really rough. But I’ve learned over the years how to work around telling people.
What were you feeling that morning your hands were red and in pain?
I didn’t know what to think, actually. But when we found out what it was, I described it as a nuclear bomb had just gone off in my life. It was over. I was discouraged and frustrated. I was scared because I hadn’t had the opportunity to research the condition yet. So it was really hard and I didn’t know how it was going to affect my family. I didn’t know how it was going to affect the rest of my life. I just kind of felt lost at that point. I didn’t have any knowledge. I heard ugly things about it. Once I was able to educate myself, I was able to educate other people about it. I learned to adjust and helped other people to adjust with me.
What are some of the biggest misconceptions with lupus?
The biggest misconception with lupus is that because you can’t see it, that it wasn’t there. Because people can’t see the pain, they assume that it doesn’t exist. But everything is inside. It was frustrating because I felt like people thought I was being a hypochondriac or something. I think that’s the biggest misconception that because people can’t see it, they don’t believe it.
So what do you want people who are friends and family members of people with lupus to know and how should they treat their loved ones with lupus?
I think first people should be open to understanding. The research is the most important thing. When you read up about lupus, you can understand the different degrees of lupus. Thirty-four years ago when lupus was the plague, it was understandable that people didn’t understand it. But now people can live their whole lives with lupus. It’s not a death sentence. There’s all kinds of research that they’re doing now with lupus that they wish they could have had years ago. But people need to stop and evaluate the person they’re looking at. It’s okay. We just want people to understand that when I say I don’t feel good, you shouldn’t go and buy a casket. There are going to be days that I don’t feel good and there are going to be days where I feel really, really good! It’s how you handle it. It’s how you go about living with your condition. You have to live each day with the expectation that you’re going to live tomorrow. It’s a no-brainer: be sensitive to people with lupus that they may not feel good. It’s not personal. We are working through it and it’s going to be okay. It’s a tricky condition to deal with. It really is.
What helps you get through it?
Naturally my friends and family. They are all really understanding of my condition. When I first started getting treatment for lupus, which was medicinal, I was seeing a psychaitrist at the time. He said a few things and one was to find a hobby. Something that you really like to do to occupy your brain. So me being the craft person, that’s what I went to immediately. I started using jewelry-making as my medium. At the time when I started working on my craft, it was all about beads and stuff like that. Butterflies are the mascot for, so to speak, for lupus. So I started making these pins. I went and found these templates online. I would print them out and I would do these beads in the shapes of the butterflies. And my family was like “what are you going to do with these pins? Because you’ve got tons of these things around the house!” It gave me a place to escape to. I didn’t want to find some way to make money. I just wanted an escape from the pain and that’s what I did. I started giving them away. It felt good because with every pin that I gave away, I was kind of sharing with other people how I was going to survive it. It was like giving a piece of me to other people. It just felt good. It was a way for me to not feel sorry for myself. Because I couldn’t do hair anymore, I wanted to do something that I could concentrate on, focus on and still be creative. And it just felt good to do that.
Tell me more about this nonprofit you want to start?
I spend a lot of time online researching. There’s two parts. I’ve always wanted to have my own nonprofit. I’ve always wanted to find a way to give back because my whole life my family has been in a position to help other people. I wanted to do something that would be impactful to other people. My family and I have been homeless for awhile now. It was kind of dysfunctional because I have an adult son, and my husband and I, and we didn’t want to be separated going into shelters. I think our greatest reward is that we were able to stick together as a family. As we were going through our resources, we were finding that there were limited resources for families. We were staying in motels. We were drawing our support from different websites. You know Gofundme is amazing. We were finding that there were no resources, no agencies, that were willing to help us together and help us get out of our situation because we had an adult son, not a child. I want to find a way to partner with agencies and motels or extended living places to find a way to fund a family for a week and within that week the family would come to the organization and we would help resource with agencies that would help them with housing, help them find food, etc. Kind of emotional rescue places for families because there aren’t any organizations that would help a family. So that’s part one.
The other side of that is that craft therapy has been so important in my therapy for lupus but also with our homeless situation. I wanted to have people would find time in their lives to sit down with someone, and work on crafts and hobbies. Something that would take their mind off their current situation. I’ve found it therapeutic for me to do it and I think it would be for others. I’ve not found too many places for people to do that.
What has your whole experience been like with being homeless? What has it been like as a middle class family to become homeless?
It’s humbling because you never thought it would happen to you. Our situation was kind of devastating because when it first happened, it was crushing. We didn’t understand that it could happen to anybody. My husband lost his job due to illness. He had to go the hospital. It was just my income. I got sick. With lupus you have points of remission and you have this feeling of you could do anything. You know I can go out and work and so all these great things. Then the world comes crashing down on you. When that happened, we didn’t know what to do. You’re embarrassed and frustrated and angry. You didn’t want to talk to people about it. You feel humiliated. You feel less than. It was just really, really rough. It had never happened to my parents. We weren’t prepared. It has brought my family closer. I felt bad for my son who had never experienced any kind of hardship like this. He was forced to mature, grow up and understand that we have to work as a unit now to survive. And that’s what we did. For the first couple of weeks of homelessness, we lived in a minivan. We ate and survived in McDonald’s. We were at McDonald’s for our meals. A dollar value meal and we used their wifi to research. We would spend hours with a laptop at McDonald’s. Honest to goodness at this point if I ever saw another McDonald’s, I could scream. I don’t ever want to see another McDonald’s ever because we spent so much time there. When we gathered enough money to get into a motel, that’s what we did. We had two little dogs and they stayed with us the whole time. We would take turns with the dogs, walking them. We had to work as a unit. I really found a new respect for people that we see on the sides of the roads. I have nice things. If I walk past somebody with nice clothing on, you wouldn’t know what I was homeless just like I wouldn’t have known a person that was a professor with a family living in a nice home who lost his job and his wife was a homemaker and now they were forced, eight people to live in a one bedroom apartment. You just don’t know.
It could happen to anybody. That’s probably the biggest misconception about homelessness. Is there anything else you want people to know?
I think that not judging a book by it’s cover is the biggest thing I want people to know. You never know. I didn’t know until it happened to me. I was working a nonprofit in OTR where we supplied people who were in disadvantaged situations to get haircuts and grooming services. They just needed to get cleaned up and feel good about themselves. The family (professor) I was just talking about … it moved me to tears. When he came in the only thing I could see was this man who supported his family from being a professor but he lost his job and his family just didn’t know what happened. So he wanted his wife and his daughters to have some normalcy in their life. So they came in and he just wanted me to give them a day of beauty. So he left and when we came back, he was reduced to tears because his family was so grateful for a shampoo and just girl talk. He was just so happy that his family felt good about themselves and he could afford to do that. It was humbling for him and humbling for me.
It’s interesting that you worked for Haircuts for the Heart and then several years later this happened to you. Do you feel like this time helped you at all?
Oh absolutely! There were resources that I didn’t know about. Working there did prepare me for a life that I didn’t know was coming. We worked with different kinds of people from students to just low income people to homeless people. Just watching the impact that it had on people, it did affect me when this came about. Just walking by someone on the street now with a sign that says “I’m hungry.” Once upon a time there was a stigmatism that people on the roads or on the streets were drug dealers or drug users or alcoholics. I look at people differently now and I feel good that I look at people differently now because I don’t want them to judge me, so I don’t judge others anymore. When I walk past somebody, that instinct to cringe is just taken away now.
How does it make you feel when you put on a dress?
I was a debutante and I was always groomed to wear dresses and to be very girly. I was a beautician, so the world of beauty was my world. When I wear my dresses, I feel empowered as a woman because that is our thing. You feel good, you feel pretty, you feel light as a feather. It feels good to put on a dress. It just feels nice. I feel like a woman. I don’t feel like a homeless woman or a sick woman. I just feel like a woman.
What does being a woman mean to you?
Being a woman for me is being the backbone to life. We are the nurturers. We are the ones everybody goes to. I’m a grandma and I have a little granddaughter. The first thing she does when she sees me is she sticks her hands out wanting fingernail polish. She’s only one and a half, and she already feels empowered as a little girl to feel girly. We have kind of dismissed the whole culture of wearing dresses. When I was younger, my very southern grandmother would dress me in frilly dresses. The frillier, the better. The lace, the crinoline … it was almost disgusting it was so girly. It just felt good to be in a dress. I’m glad I can share that with my granddaughter.
