Expecting a baby after years of struggle

Since 2009, Jen has gone through four miscarriages, an ectopic pregnancy, multiple rounds of fertility treatments, the loss of a fallopian tube, and her husband underwent urological surgery. Now, after seven years, Jen is happy to be 8 months pregnant with a baby girl, Emersyn. We spoke a few weeks ago about what it’s like to be on the other side of infertility after years of struggles.

Photo credit: http://ashleykemper.smugmug.com

Caitlin: So last fall you find out that you are pregnant, for the 6th time. At that point, are you cautiously happy?

Jen: Every time.

Caitlin: You feel happy and excited every time?

Jen: Yes, like you’ve said, I’m cautiously happy. I think, maybe this is the time. Maybe this is going to be it. But of course in the back of your mind, there’s always that constant paranoia. I worry I’m going to go to the bathroom and I’ll be bleeding. That’s the mindset. It took me a long time to feel relaxed with this pregnancy. When we found out it was a girl, I was like okay. Maybe I can relax.

Caitlin: Those milestones make you feel like, okay, maybe this really is going to happen?

Jen: Every ultrasound is huge. We had one at four weeks, we had one at six weeks. Then another at eight and then another nine, fifteen, and eighteen weeks. It’s wonderful to see her on that screen. She’s healthy and she is okay but at the back of my mind, I’m wonder, when is the other shoe going to drop or something bad going to happen?

Caitlin: Do you feel scared, even now?

Jen: Yes.

Caitlin: I think that every pregnant women does, to be honest. I didn’t have any trouble getting pregnant, but it was the same sort of thing for me. Every ultrasound it felt a little more real. I was like okay, this is happening. You’ve gone through so much, so I imagine why that anxiety would be just multiplied for you.

Jen: What a lot of people don’t realize is, 65% of first pregnancies end up in miscarriage. (With our first pregnancy) I said okay, maybe we were a part of that 65% and everything after will be fine. Maybe it was just a fluke, and then it kept happening. At some point you realize, something is not right. It was hard to want to try again. It was hard when we found out that we were pregnant this time.

I kind of had a feeling, we had ran half of a marathon over the weekend. Something just felt off. And my husband said, maybe you are pregnant. I took the tests and it was instantenous. It was one of those, okay how is this one going to go?

Caitlin: You’ve always been open about your struggles to have a baby. You share your story on Facebook and on your blog, kyleandjensmith.blogspot.com. Why did you make that decision and how did that work for you?

Jen: Well, we didn’t talk about it the first time that it had happened. That was really hard. Only our family knew. So, since then, I’ve tried to tell people what we were going through. I couldn’t imagine going through everything that we’ve been gone through and not talking about it. I think it makes it worse.

My husband said if you’re comfortable with sharing, I’m on board. I think when you haven’t been in the position that we’ve been in, it’s kind of hard to understand why we are so open. It’s a comfort thing. It’s something that happened. I don’t have to walk around with a smile on my face because people know what’s going on and and they understand. It just made it easier knowing that people did know.

I also think, it’s an educational thing. I don’t think people understand how common this is. They don’t realize, one in eight couples deal with infertility and pregnancy loss on a very recurrent basis.

We’re trying to help others that are going through the same thing and dealing with it. Not knowing where to go, what to do. What programs are available to help them? That’s helped me. If I  can help someone else by sharing our story, then I’m perfectly okay with that.

Caitlin:  For people maybe who have friends or family who are dealing with infertility. What do you think is important for them to know? For them to be the best support for their family member ?

Jen: Just be good at listening. If someone in your life is dealing with infertility, just listen. Let them cry, let them get their feelings out. For me, that was huge. I called my sister and she let me go off on a rant if I was having a bad day about it. The little things can make all the difference for someone who is going through it.

I think some of the hardest things for me was one of the family members or friends getting pregnant, and they were afraid to tell me. Don’t be afraid just tell me. It made things so much harder, if you apologize a million times.

Caitlin: I feel like that puts you into a really awkward position. You shouldn’t have to be reassuring the pregnant person.

Jen: My sister got pregnant when I just had had a miscarriage. She texted me, tell me to call her. I called her and said, “You’re pregnant aren’t you?” She got real quiet and she said yes. She began to apologize.

Being pregnant is not something you should apologize for. Just because someone else has problems doesn’t mean that we don’t have the ability to be happy for somebody else. People need to understand that. We don’t lose feelings for everyone who is able to have kids.

Caitlin: Now you are on the other side. You are one of the lucky ones to be able to pregnant. What has it been like for you switching roles here?

Jen: It’s very surreal. I wake up every day, I’m like okay, this is happening. I will say, though, it doesn’t take away all the pain I’ve been through. We have five babies that are not here. That kills me every single day. To wonder what could have been. I still think about those other ones. We are very lucky, but she doesn’t replace the ones we lost.

I want to be an advocate for those who are struggling. Yes, I am on the other side but at the same time, it doesn’t negate everything that has got us to this point. We’ll never forget that.

Caitlin: That’s a part of who you are know, I imagine.

Jen: It is, very much.

Caitlin: What are you most looking forward to now?

Jen: Everything. The next milestone. I have my glucose test coming up and people joke about how hard that is.

Caitlin: Oh, that’s nothing after what you’ve been through!

Jen: Yeah, I’ll sit there, I’ll be fine.

I’m excited about all the little things. Having her, teaching her, and supporting her. It’s the little things that we’ve wanted since we got married almost eight years ago. We are so excited and our families are so excited.

A lot of people didn’t think it was going to happen and I can’t blame them. I didn’t think either. I thought it was just going to be disappointment after disappointment.

Caitlin: What do you think you’ve learned about yourself on this journey?

Jen: I’m a lot stronger than I give myself credit for. With my first miscarriage, I was like, I cannot do this again. I can’t keep going, I can’t go through that again. I realized just how determined I was to make this happen.

I’m tough, I’m strong, and I can push through for myself and Kyle. It made us grateful. I wouldn’t change anything.

Image courtesy Jen Smith

Photo credit: http://ashleykemper.smugmug.com

10 years and 2 kids later

Think back to when you were 19 years old. What were you doing? What was important to you?

I was a sophomore in college. I had just chosen my new major and was just about to get together with my now husband, Rob. Thinking back on it now, a lot of the important puzzle pieces of my life came together that year. But, really, I was just a kid.

That’s where we find Jessica in today’s post. 19 years old, a sophomore in college. And pregnant.

Jessica shares what she felt in the moment and what’s she learned ten years and two kids later.

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Caitlin: So, you became pregnant when you were 19, unplanned and unexpected. Tell me about finding out you were pregnant for the first time and some of those details you’re willing to share.

Jessica: Yes! Well, I was starting my sophomore year of college and dating (my now husband) Kevin for about eight months at the time.  I had recently gone off of birth control because of mood swings, and we had unprotected sex once when I became pregnant. I can very vividly remember, haha. I obviously should have been protecting myself, but my first appointment with a gynecologist as a teenager determined I had a tilted uterus, which is not terribly uncommon, but my uterus was tilted at a different angle from most. The gynecologist told me it would lead to trouble getting pregnant.

Back to the unprotected sex, I had started training for lacrosse season that spring, and so when my period was late I kept thinking that it was because I was running more. One morning I decided to pick up a pregnancy test, my very first one, and immediately started crying when I read the positive result.

Caitlin: So, tears can mean so many things. What emotions were you feeling? All of them?

Jessica: Honestly, probably not any on the joyous spectrum, but instead mostly shock and confusion, with some “what am I going to do” thrown in there.

Caitlin: So, how did you decide what to do?

Jessica: I only told a few of my closest friends in an attempt to gain some perspective. I did not tell my mom though because I knew she would be supportive to the point of excitement, and I wasn’t processing the pregnancy just yet. You know, EVERY decision in that situation is life-changing. You cannot undo anything.  And so in hindsight I knew what my decision would be, but I wanted to get there myself.

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Caitlin: I think it’s a great way to explain it. Do you remember what your biggest fears were at the time?

Jessica: Honestly, very selfish fears, like how I would miss out on experiences and opportunities, how I was not ready to settle down, and how I had no clue what I was doing.

Caitlin: So, you and Kevin decided to get married. How did you make that decision?

Jessica: Again, I am going to be brutally honest, but I never made the decision.  It has been something that I have struggled with for years.  It was just sort of assumed by (I guess) our families and us that if I was going to have a baby, we were going to get married.  Sounds crazy, right?  But it all happened in such quick succession that it’s almost a blur.

Caitlin: I know you’ve struggled some with feeling like you’ve missed out on things that most young people get to experience because you were married with a baby at the age of 20. If you’re willing to talk about it, can you share some of that?

Jessica: Sure!  Actually, one of the first things my mom said to me when I told her that I was pregnant was that anything you can do without a baby can be done with a baby. It still astonishes me that she said this, because in my experience, there are so many things you cannot do once you have a baby. You are always considering someone else who is completely reliant on you. This can be very limiting if you are not ready to take on that responsibility. In hindsight I don’t feel like I missed out on any experiences, but that is perspective that I’ve gained over the years. At the time, the experience of young motherhood was isolating.

Caitlin: So, the important part, tell me about your baby girl and what it was like being a new mom so young?

Jessica: I realize how cliché it might sound, but she is the love of my life. She is a miracle, and if I would have never gotten unexpectedly pregnant, I would be missing out on this precious soul that brings so much quality into my life. Even when she was little I would say that I genuinely enjoy hanging out with her. She has such capacity for kindness and humor (although I have to hide my giggles when she cries during Disney movies).

Like I said, the experience was isolating, because no one around me was going through it. But in a way, I am actually incredibly grateful for that, because I never asked anyone else for advice. I approached everything with her from the perspective that she and I would figure it out together. This allowed me to evaluate my own comfort level with aspects of mothering; for instance, I breastfed Cambrie for eighteen months, and it gave me such confidence.  It also keeps me from giving other mothers unwarranted advice. My usual go-to is, “You’ll figure it out.” Everyone is figuring it out.

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Caitlin: Yeah I think that’s great. We’re at a time in our lives now where SO many people are having babies and I can see how easy it would be to compare yourself to the people around you. I think it’s great that you were able to just do your thing. We’d be remiss if we didn’t mention your second baby girl. What was it like being a mother for the second time at a little more typical an age (although still kind of young)?

Jessica: Haha, yes, thank you for reminding me! Harper is the complete opposite of Cambrie. She is rough and tumble, and is still learning the empathy that Cambrie seemed to be born with. My dad actually calls Harper the Heartbreaker because of her personality. She is certainly my wild child, but it is so much fun because she adds such a dynamic to every situation, even the mundane.

One thing about having both Cambrie & Harper on the younger side is that I sort of took for granted getting pregnant and having healthy babes, whereas our friends who are having their firsts now have a completely different appreciation than I did.

Caitlin: Did you ever feel judged by other people for having kids so young? And getting married young?

Jessica: YES.  Absolutely. When I was pregnant with Cambrie I would never leave the house without my engagement and/or wedding band. I felt like it would give people the wrong impression about me, that I was irresponsible and what have you. But even that experience really encouraged me to decide what kind of person I wanted to be. In a way, I was projecting those insecurities because I felt them myself.

But the older I get, the less self-conscious and critical I am. People and circumstances are so complex, and there is so much gray in the world. It doesn’t serve anyone to assume anything. Nowadays I welcome any questions about how old I am, how old my daughters are, what I am doing in my life, because I am happy and content with those things, even if it took me all of my twenties to get there.

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Caitlin: Ah, excellent point to wrap up. What have you learned about yourself in the last ten years that you’ve been a mom and wife, however unexpectedly?

Jessica: I’ve learned that life has a way a giving us what we need when we need it, and whatever path you choose will serve you. There are no right or wrongs, just choices. It’s all about kindness and humor and deep breathing.

Images courtesy Jessica

 

Joining Overeaters Anonymous

I always offer my interview subjects the option to be anonymous. No one has ever taken me up on the offer until now, to talk about joining to Overeaters Anonymous.

Jessica* wasn’t ready to share her identity with the world, but she did recently take the first brave step of going to an OA meeting. She’s been going for about a month and a half now, 3-4 times a week. Jessica tells us what got her to that point and what she’s learned so far. Thank you, Jessica, for your willingness to share with the rest of us. Wishing you luck and strength in your journey!

Caitlin: So, how did you make the decision to join Overeaters Anonymous.

Jessica: It’s a long time coming. I’ve been trying to diet for the last 5-7 years. It would work for like 30 days, and then I’d be like, “Oh great, I lost ten pounds. Now I’m going to eat everything in sight.” Or like, if I’m studying, I eat. Eating is such a social thing and I’m such a social person, so it’s like, you have it in happy times, and when you’re with people you love. And then when I was sad, or by myself, I would think food would remind of happy times and fill what I need. It would fill a void.

I saw my family this summer and I would talk with them about where I was in my life. I wasn’t very happy. I was looking for something to make me happy. Whether it was a different job, or to change my relationship, or whatever it was, I was looking for something to make me happy and it wasn’t.

I think I was more miserable than I thought I was. Your immediate family has a way to cut you down a little more, but like, in a good way. They call you out on your shit.

Caitlin: Like hearing the lies you’re telling yourself?

Jessica: Exactly. And, some vocal people in my family have no problem doing that. There are a lot of people in my family who are in some kind of addiction program and they’re like, “Well, you know, I know some people who are in OA, and they’re normal people.” They thought I should give it a try and even if I didn’t like it, I would know what I was saying no to.

So, I went to a couple meetings and it was an eye-opener. I identified with what people were saying. And I was surprised that there are people from all walks of life there. There are executives, stay-at-home moms, people who are super fit, to people who are really obese. There’s definitely a huge range, which made me feel a lot more comfortable.

Caitlin: What was it like walking into your first meeting?

Jessica: Scary! I went to one in my neighborhood and it was nothing like what I thought it would be. It was all like Stepford Wives and put together soccer moms. That shocked me. But, what’s nice about it is that helping newcomers is part of everyone’s recovery. So they are quick to welcome you and you start recognizing people. So, they know you and ask how your week was, and that kind of thing. You can be as involved as you want.

Everyone has the same issue. You’re walking into a room where everyone has the same biggest insecurity as you. So, it really levels the playing field, you know? It’s comforting.

Caitlin: So, what does abstinence mean in OA?

Jessica: So, I’m definitely still new and learning, but abstinence is different for everyone. You basically want to be abstinent from falling off a meal plan, or whatever your rules are. So, some people will only eat three meals a day and not snack. There are a lot of anorexics and bulimics in the program, so they’ll need to stay away from bingeing and purging. It evolves and changes.

It makes it a lot harder, I think, because food is everywhere and you can’t not eat. For alcoholics, you can stop drinking.

For me, if I eat one chip, I’ll eat the whole bag. I don’t understand how anyone eats one chip and then forgets about it. That’s just not possible for me. So, that’s on my list. Trigger foods.

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Caitlin: So have you defined your rules?

Jessica: So, I don’t have hard fast rules yet. This past week was not a good week for me. I’ve been super stressed with school and stuff and I’ve thrown whatever rules I’ve had out the window.

But, that’s what’s nice with OA. So, before, if I was on Weight Watchers or something and I ate something bad, I would have said, “Oh, I fucked it up, oh well.” And I’d never go back because I’d be embarrassed. But, with OA, you create relationships with people and they completely understand. There are people who have been abstinent for 20 years, but it’s still a fight.

Caitlin: So you know how people often substitute one addiction for another? I wonder if people with a food addiction just substitute one food for another. Like, you said you cannot eat chips. Do you just replace something else with chips? I think that would be so hard to navigate.

Jessica: It’s interesting. A lot of people who are in the program are in many different programs. So they’ll be in AA, and others, and I think for a little while I was very, very judgemental. I just didn’t understand addicts. I was like, “Well, just don’t drink. Or just don’t do drugs if it’s messing your life up so much.” I was never introspective enough to realize that I have that same addictive personality, it just manifests itself differently in me.

Even in the last month and a half that I’ve been in OA, my anxiety is ten times worse than usual. Just because I have to feel my feelings instead of eat. I can’t go buy a bag of chips when I feel upset. I have to deal with my feelings. And I never realized it, but my feelings are really strong. I had to stop self-medicating with food.

Caitlin: In what ways do you feel like overeating was messing up your life?

Jessica: Being overweight is really hard. It’s the fastest thing for people to judge you on. For me, it’s my biggest insecurity. I won’t apply to jobs because I think they only want skinny, pretty girls. Or anytime I don’t get a job, I wonder if it’s because I’m overweight. And the career I want, is fairly image based. It’s a sad fact, but there’s so much judgement against overweight people. You’re seen as sort of slobbish, and not put together. Whether that’s true or not, you have to play the game to get ahead. And, personally, I haven’t had any health issues, but I can see my weight going up over the years and if I don’t stop it now, in ten years I might be 100 pounds more overweight. I’d rather nip it in the bud now.

Caitlin: I’m wondering how this has impacted your relationship. I think admitting that you have a problem with overeating takes a lot of guts.

Jessica: (My partner) is amazing. He knows what my goals are and tries to keep me on track. When I told him I was joining OA, he didn’t really get it, but he’s super supportive.

Overeating has definitely impacted relationships in the past. Whether it was my own insecurities or there was actual judgement, it definitely eroded the relationship.

Caitlin: I’d love to follow up with you in the coming months, but I’m curious, what’s your goal?

Jessica: Just to go to meetings right now. I’ve heard people are very hard on themselves in the beginning. And I wanted to be perfect at it when I started. But, then it wouldn’t work and I’d fall apart and go on a binge. So, my goal is to just keep going and build relationships and hopefully find a sponsor.

*name changed to protect identity

Images: Ann, Rooky Yootz

 

 

Leaving domestic violence behind: Surviving to thriving

Domestic violence usually lurks in the darkness. We know it affects families of all kinds, but we rarely talk about it. I think if you’ve never been in an abusive relationship, it’s hard to understand why someone stays. It’s hard to comprehend how abuse can go on for years and years.

So, I wanted to talk to someone who could help us all better understand the point of view of someone who has lived with abuse. Thank you to Laurel House for putting me in touch with Wendy, a woman who stayed with her abusive husband for 20 years before leaving for good. And thank you, Wendy, for your strength, your bravery, and your honesty.

Caitlin: So, I understand you were married to your husband who was your abuser for 20 years. Tell me a little bit about that relationship and some of that background.

Wendy: Well, I grew up in a dysfunctional home. I was just rejected a lot when I was younger. My mom was married three times and her third husband turned out to be abusive.

I met my husband when I was only 20 and the abuse started right away. I had three kids by the time I was 25 and my husband was constantly accusing me of having affairs. It could be with anybody… the neighbor, my pastor, my brother-in-law. You know, extreme jealousy. It isolated me from family and friends. So, I just lived with constant accusations of things I didn’t do. He would grill me to the point where I would say the truth, but that wasn’t good enough, and he’d tell me I was lying, and I wound up with memory loss from that trauma.

Caitlin: Did it make you question what was an actual memory and what were you just saying to go along with him?

Wendy: Yeah, exactly.

Caitlin: Wow. Was he ever physically abusive?

Wendy: Yeah, he was physically abusive, but not all the time. He punched me in the face when I was pregnant. He blocked the doorway so I couldn’t leave. He put his hand over my mouth so I couldn’t breathe. He pushed me into things when I was holding the baby. Just a lot of violence, yeah.

Caitlin: Just talking about it, does it bring up those old feelings?

Wendy: Yeah, in fact, I was thinking about it today knowing that we were going to have this talk. It’s been seven years. I have a whole new life now. But, everytime I think about it, it brings back the trauma.

Caitlin: You know, people have been talking a lot about domestic violence as it’s been in the headlines recently and there’s been the question, why do women stay? And you stayed with your husband for 20 years. I think a lot of people have a hard time understanding that. When you look back, why do you think you stayed for all those years?

Wendy: Yeah, I can tell you why I stayed. People ask, why do you stay? Why do you put up with that abuse? But, they don’t understand that when you have to leave, you’re not just leaving your husband. You’re leaving your community, your home. It’s great if there’s a shelter, but there’s rules, there’s curfews. It’s really hard to leave. And then you wonder, how are you going to make it on your own? Especially when you have kids.

Caitlin: And I know a symptom of abuse is believing that you can’t make it on your own, that you need your abuser to survive. Did you feel that way?

Wendy: Oh definitely, because he brainwashed me. “Nobody will ever love you like I do, Wendy. You’re not going to be able to find a job, you’re not smart enough.” I had three small kids, and I believed him at the time. I had low self-esteem and I needed him. I did. I felt trapped. I couldn’t leave him and I couldn’t stay. It was a horrible place to be.

Caitlin: Was he ever abusive to your children?

Wendy: Yes. I have three older children and he was physically and mentally abusive to them. Seven years later, they’re still having a lot of problems.

Caitlin: Did the people in your life know about the abuse?

Wendy: They did. I would go to my friends crying, and they’d say, “Wendy you need to leave him, you should call the police.” But, he’d isolate me from my family and friends. If I would leave him (and stay with friends) and then come back he would accuse those friends of taking our kids away from him. And then they would get mad at me and then I wouldn’t be able to go back to them.

Caitlin: Did you leave several times before you left for good?

Wendy: Too many times to count. They say it takes 7-8 times to leave. I left probably twice a year for 20 years. People say, “Why did you go back?” Well, I loved him.

Caitlin: So, how did you finally leave? Tell me that story.

Wendy: It was May 27, 2007 on my daughter’s 19th birthday. I was trying to make her day special and he accused me once again of having an affair with a neighbor, and he screamed, as always. And I said, “I can’t take it anymore.” It was the last straw. I had been thinking for a couple of months of how I could leave and get a job. I had my fourth baby a couple years earlier and I didn’t want him to have to go through what my older kids went through. That was it, I had enough. It was time to leave.

Caitlin: How did you do it?

Wendy: I stayed at a couple different women’s shelters, including Laurel House. I was a mess. Just so upset. I knew I was making the right decision, but still, it’s really hard to leave. And, as crazy as it sounds, I still loved him. So, I had a lot of emotions. But, the counselors were very helpful and got me into a job training program and I got my life together.

Caitlin: What’s good about your life that you couldn’t have imagined seven years ago?

Wendy: Everything. I have a wonderful life. I have a life of freedom. I can come and go as I please. I don’t have anyone checking on me, 24/7. No one asks what men I talked to, or where did you go, what did you do, all in the name of “love.” I have the freedom to go where I want, and do what I want. I have much more self-confidence.

Caitlin: Has your strength surprised you?

Wendy: Definitely. I learned how strong I am. And how going through this brought my faith in God stronger. And I want to help people. I want to help women who are going through this, and give them hope for their future.

Caitlin: So you volunteer at Laurel House and work with women who are leaving abusive situations. What has that been like for you?

Wendy: It’s wonderful. It means I didn’t go through it all for nothing. I get there and I say, “Look, I was standing in your shoes. I know exactly what you’re going through and I’m here to give you hope.” I made it and I’m working. I’m taking care of my kids. You don’t have to put up with abuse. There is a better life out there.

 

If you’re in an abusive relationship, don’t keep it to yourself. You can reach out to The National Domestic Violence Hotline. Do you have a friend or family member in an abusive relationship? Here are some tips to help.

Image: Kathleen Christiansen

 

Transitioning to happiness

That is a “before and progress” picture of Kieran, who is currently in the process of transitioning from female to male. Kieran told me he is “an open book” and that I could ask him whatever questions I wanted. Thank you to Kieran for answering my questions so honestly and for sharing so much information!

Caitlin: When do you first remember struggling with your gender? Can you share a bit of your back story?

Kieran: When I was in first grade, I have a distinct memory of saying things like “If I were a boy, I would like…” I absolutely was a “tomboy” and played primarily with boys toys. Around that time, my very young uncle used to tell me stories that started with “When I was a little girl…” He told me that little girls turned into boys around 11 years old and vice versa. I was beyond excited and looked forward to this like you could not imagine. At some point, I obviously realized that was not going to happened and was pretty sad.

I continued to feel like I was basically just an awkward tomboy for a number of years. Around 13 or 14, I realized that I was exclusively attracted to women. I still tried to have boyfriends, because I was not really able to come to terms with that. I still had this thing in the back of my head that I didn’t really understand. Through my teens, I would date guys that I wanted to be like, not that I actually wanted to be with, but I hadn’t yet been exposed to the transgendered community and so I sort of just chalked that up to being a lesbian. I dated a few women in my teens as well. I had a fair number of other issues when I was a teen, so it was hard to understand everything I was dealing with.

At around 18 or 19, I was exposed to what it meant to be trans. I was in college and was meeting more people and also took a LGBT history class. A giant lightbulb went off in my head and everything suddenly made sense. I talked to all of my friends at the time and began to live life as a male for a short period of time. I had been out as a lesbian and only dating women for a while. I finally felt good in my own skin when presenting as male and was happy.

I told people back home and it did not go nearly as well. I freaked out and thought that perhaps all of this was related to some other issues I was having. I reverted WAY back in the closet and started dating a guy pretty seriously when I was 19. That obviously was a disaster and didn’t last.

At 20, I started dating a woman. A year or so into dating her, I let her know about being trans. I attended trans support groups and was pretty ready to make a transition. The problem at the time was that many people that were transitioning when I was 20 were in the 35-45 year old range. People waited longer. And, it was expensive and not as available as it is now. So, I had made a decision that I would wait a few years.

Before I got to the point that I was going to transition, I got a job at Friendship Hospital for Animals. I decided that when I left Friendship, I would transition after I left that job but before starting whatever job I took next. At the time, there were not protections for being trans in the workplace and it was rare that people would transition while staying in a job.

So, I waited. And waited. And waited. And nearly 15 years went by and I was still at Friendship.

I started dating my wife, Caitie, in 2006, and she was aware before we started dating. I continued to hide it from some people at work (some knew) until February of this year. At that point, I felt like I just needed to transition whether that meant staying or leaving the job I love. I made sure all of the managers that reported directly to me knew and then I told my boss. It went well. (More on that below)

Caitlin: I understand that you are married with children. Can you talk a little bit about how your family affected your decision and this process?

Kieran: I am. (My wife Caitie and I) have 3 kids– a 4.5 old son and 2.5 year twins (a boy and a girl). The kids have called me “Baba.” Caitie picked it, it worked for me. We figured, since I had not transitioned, if they called me “Dad” out in public, it might confuse people and be difficult for my kids to understand if people made comments. And, there was no chance we were going to have them call me Mom or anything like that. So, Baba it is.

My family is the main reason that I finally pulled the trigger. I have struggled with depression and anxiety for about 20 years, much of it related to severe body dysmorphia (I refused to look in mirrors, for a while drank kind of heavily to self medicate, etc), and just a complete uneasiness with who I “was” to the outside world. However, I just resigned myself to being miserable. But, as our oldest started school, it became clear that something needed to be done. He has always referred to me as a boy. He never even asked, he just knew that there were 3 boys in our family and 2 girls.Well, kids and teachers at school didn’t necessarily see the same thing and that was confusing. I felt like I needed to fix that.

I also felt like if I wanted nothing more in life than for my kids to be happy, then I had a responsibility to be an example and be who I was supposed to be. So, I mustered up the courage and took the plunge.  

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Caitlin: Tell me a little bit about what the process is like. Where are you in the process? How are you feeling?

Kieran: Sure. The process is slightly different for everyone who goes through it. Continue reading

Geeking out over LARPing

Do you know what it means to LARP? Or what a LARPer is? I’ve known a few LARPers in my lifetime and I’ve always been fascinated with the passion these people have for Live Action Role Playing (LARP). So, I wanted to talk to someone about what LARPing is and why it’s so special to so many people. And, I’m lucky to have had that conversation with Tara (in the badass picture above), Senior Editor at The Geek Initiativea site that celebrates women’s contributions to geek culture.

Caitlin: Okay, so when I think of LARP, I think of that movie Role Models and also, LIGHTNING BOLT! LIGHTNING BOLT! So, you tell me, what is LARPing really?

Tara: LARPing stands for live action role playing. You basically embody a character. It’s a bit like playing Dungeons & Dragons or acting. Role Models isn’t entirely unlike LARP, but LARP is really diverse. There are medieval fantasy LARPs, post-apoc LARPs, steampunk LARPs, and parlor LARPs (which involve little or no combat).

Many LARPs do include thrown packet spells (i.e. ‘lightning bolt!’), but in practice it is usually a lot less cheesy than that. Some of the special effects can be movie quality.

That said, most LARPers realize what we are doing and that it doesn’t look entirely serious to the outside world. I think it’s healthy as a LARPer not to take yourself too seriously all the time, though there are many real benefits to LARPing and immersion.

Caitlin: Okay, so I don’t know what a lot of those words mean, haha. So, why don’t you tell me what a typical LARP consists of for you.

Tara: Sure! LARPs are diverse, as I said, but I’ll tell you about the one I’m most familiar with – Seventh Kingdom IGE in New Jersey. It’s a medieval fantasy LARP.

Participants assume one of two roles: that of a PC (player character, or the ‘adventure heroes’ of the game) or NPC (non-player character, or the quest-givers/people who deliver plot and make the world interactive).

I play as a PC. You can do various things – solve problems and puzzles, increase your standing in your character’s kingdom, delve into politics, do sneaky stuff, and participate in combat.

While you are in character, you basically act as that character. If you achieve immersion, it means you feel that very deeply (of course you need to temper that with real-world issues like safety and relationships). It’s a very entertaining experience.

Caitlin: So, I think for people who don’t LARP, this is kind of hard to really understand. Do you find that’s the case?

Tara: Yes. When I talk to people unfamiliar with it, I usually try to stick to the basics. You get into costume, you pick a character type you’d like to play, and then you act like the character! It is actually that easy to get started.

By character type I mean ‘class’ or ‘profession,’ as in what the character does. Rogue, witch, diplomat, bard, etc. Every game has different options and rules, but that’s the basic thing.

Caitlin: It sounds a lot like method acting, actually.

Tara: I am not an experienced method actor, but I have witnessed others go through the process and I believe it’s really similar. You run into the same benefits and risks. For me, it is about establishing boundaries and then participating in the game with people I trust.

My first total immersion experience happened last year. I was having a really stressful time in real life, and I got a role play note that my character heard a demon’s voice in her mind. It made her feel very differently towards her protector (who normally allows her to feel safe) and then it made her feel ‘better’ than the other mortals. She revealed her ambition, which is to become queen of her kingdom. The resulting role play was just amazing.

Caitlin: What drew you to LARPing?

Tara: My husband (then boyfriend) thought I’d be interested in it and he was a long time LARPer. I was already into theater, role playing (online) and role playing games like Dungeons & Dragons, going to the renaissance faire, and I’ve been writing stories since I was 8. LARPing uses all of those talents and interests at once. So it’s like I never have to give up a hobby due to lack of time or money.

I stayed because I had a great time and found that it was a really easy way to make friends with similar interests as an adult, which isn’t always easy to do, especially if you are not single.

Caitlin: And it kind of becomes a way of life, right?

Tara: Kind of. I mean, it isn’t all-consuming, but it is kind of a lifestyle in a way, for those of us who are open about their nerdiness. I’m pretty open as a geek, which I think is easier for me than others because I am female and in a creative industry. People expect me to be quirky.

Caitlin: Are there some people who tend to keep LARPing private from their work/families/whatever?

Tara: Yes. One of my friends says, “don’t cross the streams.” He doesn’t really date LARPers and he keeps his work, love, and LARP life all separate. With social media and being tagged in Facebook photos, that can be kind of challenging.

Caitlin: Why do you think that is?

Tara: For some people, it’s a professional thing. They don’t want to be Googled and have their boss find them painted up like a demon or something. For other people, it supports their career – like actors, for example.

I think there is also a major social stigma against LARPers still. We’re low on the ‘geek hierarchy,’ although that is changing a bit. People are very afraid of what others think of them in general.

I also think it’s generally much more acceptable for women to be more outwardly expressive and creative in their hobbies than men, and that’s unfortunate. LARP really provides a forum to tackle gender roles on a different level (in the game), but out of game, a lot of guys really feel like they might be judged negatively for it.

It really depends upon a person’s career goals and field, usually. Professional athletes may even face fines if they are photographed doing unusual stuff like LARPing, believe it or not.

Caitlin: What have you learned about yourself through LARPing?

Tara: The fact that I HAVE learned about myself is probably the most valuable thing I’ve gotten out of LARPing besides an amazing and supportive network of friends – who are really family.

I’ve learned that I’m more than one thing. Like my character, I’m not just a bard, nurturer, fighter – but all of those things. And like her, sometimes I’m protecting others or standing up for them, and other times I’m asking for that from someone else.

I’ve also learned that most of the people I interact with in game, in character, are also very valuable and caring friends to me in real life, and sometimes those relationships really echo. You do not spend years playing someone’s sister or protector without a bit of ‘bleed,’ which is the term used to describe real-life and acting-life stuff blending, especially emotionally. I had no idea how positive bleed could be.

Caitlin: Would you encourage others to give LARPing a try? Who does it typically appeal to?

Tara: I’ve seen shy people find out who they are – or how they can be expressive – because of LARPing. Everyone should give it a try.

I’d especially recommend it to anyone who wants to make more friends, anyone with a theater background…or anyone who has talents they do not get to use in real life. I very rarely get to sing in real life but I LARP as a bard, and it feels good to kind of keep in practice.

Also, it’s amazing stress relief. You can hit people with foam weapons, and there are some really talented fighters out there (I am lucky enough to know a few of the best of them).

Caitlin: Anything else you want to share?

Tara: LARP is a great place to learn more about what you can do. I wouldn’t really think of myself as a ‘fighter’ or ‘defender,’ but I have learned through LARPing that those are actually really natural roles for me. I’ve become a better public speaker because of it as well.

If you have a skill you want to work on, LARP is a great place for it. You can also find in and out of game encouragement, too.

So what do you think? Do you want to give LARPing a try? Any questions for Tara? I’ll be sure to follow up with her! Let’s talk!

Image: A Clockwork Moon Images

Living with ALS: Beyond the Ice Bucket

By now, you’ve heard of the Ice Bucket Challenge. Chances are, you may have even dumped a bucket of ice water on your own head and, hopefully, you’ve made a donation to ALSA.org. I’ll admit, there were a few times when I thought, jeeze, this Ice Bucket Challenge is really taking over my news feed. But, then I heard that ALSA.org had raised something like 4 times the amount it had raised year-to-date last year. And that number just kept growing. Last check, the Ice Bucket Challenge has raised over $70 million dollars. That’s awesome.

You see, we don’t talk much about ALS because, well, the disease is devastating. It’s hard to talk about. And that’s why it’s so important that we do.

Karen Shideleff was diagnosed with ALS three and a half years ago after feeling symptoms for about six months. Because Karen’s mother had familial ALS, Karen lived with the knowledge that she had a 50/50 chance of developing the disease herself.

I’m honored that Karen agreed to talk with me about her life with ALS and how the disease has affected her family. You can read a condensed version of our conversation below and watch the video at the bottom of the post for the full conversation.

Caitlin: To begin with, you lost your mother and grandfather to ALS and you told me you were the 25th person in your family tree to be diagnosed. When did you first realize that ALS was something that you might one day be diagnosed with?

Karen: When my mom was sick, my parents didn’t want to point out to us that it was a hereditary form of ALS because my three sisters and I were pretty young. We were 16,18, 19, and 20 years old when my mom was diagnosed. And we didn’t know our grandfather, so it wasn’t something we had lived through prior.

When I got into my 20’s I was in nursing school and I was taking classes in biology and genetics and I kind of put all the pieces together. It was very shocking to figure out that I did have a 50% chance of developing ALS.

Caitlin: And that’s because it was familial ALS, which I read accounts for about 10% of all ALS cases?

Karen: Right, so they say 5-10% of all ALS is familial. The rest is sporadic which means they don’t know why it happens, it’s a random occurrence. So familial ALS is rare, even within the umbrella of ALS.

Caitlin: So when you realized that there was a 50/50 chance that you would develop ALS, how did that change your life? How did it change your plans?

Karen: I was 21 or 22 when I figured it out and I was already dating my husband so at that point I made the decision that I didn’t want to have children because I didn’t want to take the chance of passing that gene on. It’s a really personal decision. I never had an overwhelming urge to have children and my husband didn’t either, so for us, it was a little bit easier of a decision to make. But, you know, it gets harder and harder as you get older and all your friends and family are having children. So it’s a decision we just consciously made throughout our relationship and our marriage.

And really, we just try to enjoy life. We’ve done a lot. We’ve traveled a lot, we enjoy spending time with our friends and family, first and foremost. And we’ve really just built our life around that. So I always say, I don’t have any regrets with my life. I don’t feel like I’m missing out on anything, which is good. I don’t know how many people can say that.

Caitlin: Is there a constant fear when you know you could develop ALS? You know, I think of the things people get anxiety over and something like this is just more than most people could imagine. Did you live with the fear until you were diagnosed? How did you handle that?

Karen: It was a constant fear. I would be lying if I said it wasn’t. And it’s still a constant fear for my sisters, unfortunately because they don’t have any idea if they’re going to get ALS.

But, every time you stumbled on something or you trip and fall or you get muscle twitches, anything that might feel like the beginnings of ALS really just sets it off in your head and you have to convince yourself, I’m just tired, or I just exercised too much. So, it’s very hard. It’s constantly on your mind. And unfortunately for me, it became a reality.

On the flip side, at least a diagnosis when it’s familial ALS, you already know so much about the disease, so I think the acceptance portion might be a little easier to come by. Whereas, somebody who just gets stuck with an ALS diagnosis and doesn’t know what it is, that’s a really difficult time to understand what it is and explain it to your friends and family. So, in some ways, I know it sounds ridiculous, but I’m glad I knew what I was walking into.

Caitlin: That doesn’t sound ridiculous. I think it must be damn near impossible to accept either way, but it does make sense.

Karen: Well, my friends and family all know what ALS is. So when I told them I was diagnosed, I didn’t have to explain what the disease is. And I had been fundraising for ALS for years, so even my co-workers and people I’ve been friends with all knew what ALS was.

Caitlin: So, how did you finally get diagnosed and what was it like to hear those words?

Karen: I noticed things were happening with my body and I knew something was changing. I was very active before I was diagnosed and I walked my dogs all the time and I noticed that my route that I always walked with the dogs was taking me longer and I noticed that my footsteps started to sound different on the pavement. This was maybe July of 2010. So, I just started to pay attention. And as it progressed along, I noticed my balance was getting worse. So, I took yoga, thinking, well, maybe I’m just getting older, trying to convince myself that it’s not what I think it is. I would say by Thanksgiving of 2010 I was pretty certain I had ALS. It was getting harder for me to climb the stairs and things like that.

In January I spoke to my husband about my concerns. And my doctor is actually my husband’s cousin, he’s an ALS specialist at Lehigh Valley Hospital, so the next week I got a visit with him and by the week after I was diagnosed.

Still, hearing the words, yes, your EMG shows that you are definitely showing signs of ALS, as much as I knew what it was, it still was pretty bad. My husband was with me and, you know, you think you can set up in your mind, get yourself ready for it, but hearing it just sucked. I cried the whole way out of there and the whole way home and even more when I got home.

Caitlin: I imagine telling your family members must have been an exhausting time.

Karen: It was. It was brutal. We didn’t tell anyone for a month. I waited and talked to my dad first and then my sisters. It just brings ALS right back into the forefront of everybody’s lives which is tough.

Caitlin: So how have your symptoms progressed over the last 3 and a half years?

Karen: So, ALS can present differently with different people. The two main ways of presentation are either bulbar presentation which affects speech and swallowing first and maybe some more respiratory problems and then there’s limb presentation which is more arms or legs. Typically it starts on one side. For me, I felt it in my right leg first and then my left leg started to have issues several months later, as far as balance, strength, and atrophy. But, there are differences between each patient, even my mom and I who have the same genetic mutation.

I had been working as a pre-op/recovery room nurse, but I started to not trust myself as much with the patients. You do these fall risk assessments with patients when they come in and when your fall risk is higher than theirs, it’s probably a good time to stop taking care of patients (laughs). But, in all seriousness I was afraid if a patient needed me to hold them up, we would both fall and get injured. So, out of responsibility to the patient and myself, I had to stop doing any hands on nursing. But, my employers were fantastic and they just kind of molded a job for me. I’m so thankful that I was able to work for people like that, that respected that I still had the brain of a nurse.

I went from no walking assistance, to a cane, to a walker. Once my shoulders started to get weaker and I couldn’t drive anymore, it really took a toll on me. So, I stopped working. And now I volunteer at the ALS Association. I am really involved with the chapter. I joined the board of trustees and I’m chairing the patient and family services committee, so it keeps me really involved which is great.

Caitlin: So, you’re in a wheelchair now.

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Karen: I am. I can still stand, like at the counter I can maneuver around, or if I’m holding on to somebody I can do a couple of steps, but because my hips are so weak, my stability is really shot. So, if I’m home alone, I’ll only stand if like the wheelchair is behind me and counter is in front of me. But, I spend the majority of my day sitting in a wheelchair.

Caitlin: You know, if you were really negative through all of this, no one could blame you. But, you’re really positive, and I’m wondering if that’s a choice you have to make every day. How do you do it?

Karen: As I was going through telling everybody about the diagnosis, I would jokingly say, “Fake it until you believe it.” Like, I just can’t go through these months being so incredibly stressed out without finding some joy, somewhere. And my husband and I are like, okay, we’re not watching any sad movies, only comedies. We have enough crap going on in our lives, we just need something light. And I’ve always been a glass half full kind of gal. Even as a nurse, I loved helping people and making a difference for them. So, if I can make a difference for another ALS patient, I try to figure out how I can still be helpful to other people.

And, you know, I have my moments just like everybody else, but I just try to be grateful for what I have in my life and that just carries me through for right now.

There’s no pity party here. Yes, it sucks and we shed our tears every once in awhile, but then you just put on your big girl panties and carry on.

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Caitlin: So, the Ice Bucket Challenge. It’s everywhere! What has it been like to see everyone talking about ALS?

Karen: You know, there are so many things that are amazing about it. So many people are talking about ALS and hopefully even if a small percentage of those people look it up and learn about ALS, then maybe they can explain to somebody the basics of what ALS is. Sometimes people will say to me, “Why are you in a wheelchair?” And I’ll say, “Because I have ALS.” And they just kind of say, “Well, I hope you get better.” Well, I’m not going to get better, but you’re not going to say that to somebody.

I’m so happy it’s getting national attention. I think the majority of people involved with the Ice Bucket Challenge know it’s fatal. No one survives ALS, and it knows no boundaries. It will attack men and women, young and old. Hopefully those are the things that are getting across to people. And that there’s no treatment and there’s no cure for this disease. And then the amount of money that’s been raised, it’s just crazy.

There are scientists trying to figure out what’s causing ALS and there’s just not a lot of funding. Our numbers are too small for big drug companies to care. I know that sounds horrible, but we’re a small population, we’re not profitable. So big pharma is not interested in helping to find a cure or a treatment. So, this bulk of donations that have come in is amazing.

Caitlin: What ALS does to a person is so scary. What is one thing you’d want people to understand about ALS?

Karen: ALS is not just affecting the patient. It affects their whole family and their friends. Eventually you become so incapacitated, you can’t do anything for yourself. You can’t feed yourself, you can’t dress yourself, you can’t bathe yourself. All the things we take for granted doing every single day of our lives, all of that gets taken away from you. Even something as simple as losing your driver’s license, losing that independence, it’s crushing. And on top of that, the emotional toll the disease takes is exhausting and it’s hard that nobody knows what ALS is.

You feel like screaming, “No! It’s not okay!” I have family that I’m worried about. I’m doing everything I can. I participate in trials and studies. I’m trying desperately to find a cure, not for myself, but for my sisters if they need it. Hopefully they don’t. But, there’s not a day that goes by that it doesn’t cross my mind.

Caitlin: Is there anything else you’d like to add?

Karen: For everybody doing the Ice Bucket Challenge, I think it’s great and I want to say thank you. It’s overwhelmingly crazy to me that millions of people are dumping ice over their head and saying ALS when they do it. My news feed is filled with them and they make me laugh and they make me smile. And if people are donating also, even better. Pete Frates, who is one of the people who started the Ice Bucket Challenge, I can’t say thank you enough to that gentleman and his family.

Let’s keep ALS out there. Let’s not forget what ALS is or what it does to patients like myself when the Ice Bucket Challenge stops and we’re still living, hopefully very well, with ALS.

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If you haven’t donated yet, please join me in donating to Karen’s fund for the Walk to Defeat ALS. Click here to do so. Again, you can watch the video of my conversation with Karen here. Thank you! 

 

Let love take over: Lessons from hospice

I recently came across a post on Facebook from an old family friend that brought tears to my eyes. Christopher (pictured below) is a hospice volunteer. He agreed to talk a bit about work I find both fascinating and inspiring. He also shares that wonderful story I mentioned, below.

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Caitlin: What drew you to volunteering with hospice?

Christopher: I have always had an interest and curiosity about the experience of death and what comes after death. I had several experiences as a teenager with death, one in particular in which I was the only person on the scene of a late night car accident and stayed with a passenger as he died. Those experiences had a deep impact that I never forgot about. In college I took a course on Death & Dying. Elizabeth Kubler-Ross’ ground breaking theories on the five stages of grief were relatively new at the time, as well as the academic study of death. Looking back, I am honored to have obtained that knowledge thirty years ago.

It wasn’t until three years ago that I began to think about doing some volunteer work. My children are grown now and after spending years involved in various sports and school related programs, that phase of life had ended.

I was working for Abington Hospital at the time and knew they had a Hospice facility. I felt drawn to it. I walked in one day and discovered that they had an immediate need for someone at the exact time of day that I was available to volunteer.

Caitlin: Wow, it sounds like it was meant to be. What’s a typical day like for you volunteering at hospice?

Christopher: I cook breakfast two morning each week. We have a 20 bed inpatient facility with a lovely small kitchen where volunteers make meals to order for the patients who are eating. We have patients who may only spend their last couple of days with us, but we also have some who spend several months. Many of them are quite self sufficient when they come in and still have hearty appetites. So I might be cooking something as simple as Cream of Wheat or Toast & Tea, or a more elaborate breakfast like an Omelette or fresh Blueberry Pancakes.

I can honestly say there is almost no such thing as a “typical” day.  I could show up one day and no one is eating, but the next time I might feel like an over-stressed cook at a busy diner. Either way, there is always an opportunity to connect with a patient or family member. Family members can spend the night in the rooms with patients, and quite often they will ask for breakfast as well. Preparing a meal, serving food, and perhaps feeding someone is one of the most elemental forms of caregiving. A very intimate experience.

Caitlin: What is the hardest part of volunteering at a hospice?

Christopher: The hardest thing to accept is the younger patients.  When a patient is in their 80’s or 90’s death can be accepted or expected for the most part. That person has lived a full life. We seem to have so many women in their 30’s and 40’s dying of breast or ovarian cancer. Women who have young children and husbands coming in to say goodbye. It is heartbreaking.  We also have a Pediatric wing. It is not common for children to enter inpatient hospice. Most remain in the hospital or spend their final days at home. But we do have children and teenagers from time to time. It is very difficult and tough on even the most seasoned nurses.  At the same time it can be a beautiful experience. We once had a 10 day old baby. Very unusual circumstances meant that the parents could only visit for a couple hours each week. The baby had a congenital heart defect and was slowly but painlessly dying. The nurses and volunteers made a pact that this child would never be out of the arms of someone. There was a continuous stream of loving people who took turns holding the baby and rocking her. She was with us for two weeks and no one will ever forget her.

Caitlin: That’s so beautiful. I’m curious for you, what is the most rewarding part of volunteering with the dying? What keeps you coming back?

Christopher: There is ALWAYS something to learn or receive from my time at hospice if I stay open and receptive. It may come from a patient, or family member, or often from watching experienced nurses. Even the most difficult patients or family members can be learning lessons.  There is a saying “We die as we lived.” This is so true. There are people who are so grateful and giving even while experiencing great suffering or pain. You just know that they lived like this their entire lives. There are people who are the exact opposite. Nothing can make them happy. I’ve learned to accept both types of people as teachers.

Caitlin: How do you keep yourself emotionally intact doing what could be very draining volunteer work?

Christopher: Honestly, the challenge is staying emotionally present. Resisting the temptation to close off.  It can be easy to view death as routine when you are around it so often.  Every patient and family member is facing a unique situation in their lives, and that is easy to forget when there is a constant cycle of families coming and going.

Before I experienced a hospice setting I guess I imagined it to be an incredibly and overwhelmingly sad environment. That isn’t true at all and it didn’t take long to figure out why. There is continuous grief, but at the same time there is continuous Love (Earthly and Heavenly).  I have often described this as the “Beautiful Sadness.”

I have also worked with ways to help staff and volunteers stay mindful and present.  Last year I took a course that was based on  “The Tibetan Book of Living and Dying” by Sogyal Rinpoche. (You can check out a video about the course here.)

Based on the course, I set up a meditation and mindfulness program and have presented it to fellow volunteers. I’ll be continuing the program this fall and we hope to expand it. The goal is to provide a pathway to enhance end of life caregiving skills by reducing fear, increasing compassion, and embracing the emotional roller coaster.

Caitlin: You shared a story on Facebook recently about comforting a family while their loved one was passing away. Can you share that story?

Christopher: Sure. An 80 year old man, dying of liver failure, was surrounded by his family. His wife of 58 years at his side, two daughters and three grand daughters stood around the bed as well. Tears were streaming down all faces. He shook my hand with the strongest grip I have ever felt from a hospice patient. The only words that came to my mind to say to him were, “You are surrounded by love. Nothing else matters right now.”

That family will stay in my heart and that is the greatest gift of hospice care, and why there is absolute truth in the old saying “You get way more than you give” as a hospice volunteer.

The more I think about this, and the words “Surrounded by love”… is the realization that he is not just surrounded by the three generations in the room. He is surrounded by an unending generational chain. All of his ancestors who have passed before him, and all of his descendants yet to be born. It is all part of the same LOVE, unbroken and inseparable. It is with us always.

Caitlin: I think that is so powerful. I am personally really uneasy about death, but those words really made sense to me and I think they’re so true. It certainly brings peace to me and I hope it will for my readers, as well. If I may bring up, I know you recently lost your mother. How has this volunteer work impacted that loss and perhaps helped you deal with it or understand it?

Christopher: I don’t think it lessened the pain or loss at all, but it certainly helped to understand the process of a prolonged terminal illness like she had. I was better equipped and capable of talking to her about death than I would have been without the experience of hospice work. Even more so, was the ability to help family members work through the pain.

Caitlin: What advice would you give other people as they care for family members who are in their final stage of life?

Christopher: Stay focused on the moment, enjoy the smallest and seemingly most insignificant moments. Be sure to take care of yourself as well as the person who is dying.  There is a tremendous amount of internal stress going on that people are often not even consciously aware of. Eat, sleep (or at least get rest), and take time for yourself on a regular basis. Without this you can not give your best to your loved one over the long run. Above all, put aside petty differences or difficulties with family members.  There is no time for this at all. Let love take over.

Caitlin: Let love take over. That’s really great advice for all situations, actually. Obviously, this kind of volunteer works seems like it could be very emotionally difficult. Is it hard for hospice to find volunteers?Why should someone consider volunteering with a hospice?

Christopher: It can be; both difficult to do and to find volunteers.  I think that the people who volunteer for hospice as well as the people who make a career of working with the dying will mostly tell you that it is a calling.  Maybe some people try it and then discover that it is too much to handle. There can be a lot of emotional burnout as well.  This can happen in any field though.  There are many ways to volunteer for hospice without having to be in direct contact with patients. We have a fantastic group of people who make quilts and crochet blankets for every patient.  (I have my mother’s quilt that was on her bed during hospice care)

We have people who are trained to do follow up grief counseling with family members. And we have people who volunteer time doing clerical work or fundraising. These are all vital components of the whole hospice network. I would say that if someone feels called to do this type of work, they should listen to the calling and contact a local hospice. They will always be welcome to come in and discuss the possibilities.

Thank you so much for sharing your story, Christopher. I think it takes a truly special person to do the work you’re doing and it makes me happy to know there are people like you caring for those in the last days of their lives.

If you’re interested in volunteering at Abington Hospice at Warminster (in Pennsylvania, where Christopher volunteers) you can call Volunteer Coordinator Nancy Leporace at 215-441-6831.

Image credit: Christopher

 

He Said/She Said: A Military Family, Part 2

Today we’ll get the other side of the story on this week’s He Said/She Said. You can check out Part 1, Robert’s story here.

Meta became a military wife in her 30’s after she was well established in her career, and a home owner. The military took her out of the South and dropped her off in Upstate New York at Fort Drum a few months after her wedding. A few months after that, her husband deployed.

Once Robert came home from deployment, Meta got pregnant and gave birth to a little boy, Bo. A few months later, Robert deployed again.

Meta talks about what it’s like to be the spouse and parent who is left at home during deployments. Although I hope this is obvious to most, I want to point out that each military spouse is different and this is simply Meta’s story. But, as a former Army Wife, I think most military spouses will find something in this story they can relate to. And for those who have never loved someone in uniform, here’s a little glimpse into the highs and lows of being a military family. 🙂

Caitlin: The Army baptises you fast. Your husband deployed just nine months after you got married. I talked to your husband about the difference between deploying as a single soldier and then as a soldier with a wife and kid. What was the difference for you between having your husband deploy before and after you had a baby?

Meta: Completely different deployments. Both were hard in their own way.

His deployment in 2011, we didn’t get to communicate very often. We emailed, never Skyped. We would talk every weekend or every other weekend.  One time we didn’t get to talk for three and a half weeks.  As someone who loves to talk, especially to my husband, work was very important for me. It became an outlet.  I would go to work and talk, talk, talk, talk, talk. Because I would come home to no one. I didn’t have many friends yet, so the communication thing was hard.

It taught us a lot about what we could get through. I was miserable at first. I felt a distance from my husband that made me ache. Once I settled in and made friends, it got easier. But, I learned a lot about myself during that deployment.

Caitlin: You learned your strength.

Meta: I did. I also learned a lot about letting go. While I like to have a general plan, the Army taught me you can plan as much as you want, but it’s bound to change. I plan, but I don’t set my heart on it.

This most recent deployment, having a child, I couldn’t sulk. But, we talked every day, sometimes twice a day on Skype. And my husband could see our son, Bo. I think it helped me to be able to have real discussions with my husband. He would get up at 3:30am his time to talk to us on Skype.

Caitlin: That’s so nice.

Meta: I know. He’s such a good husband and a good daddy.

It was really important for Bo to see and hear his Daddy on Skype. It was hard. There were times I would cry because Bo would try to share with Daddy and try to hand him things through the computer. Those things tug at your heart.

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Also, on this last deployment, five days after he left, I had a miscarriage. It just so happened that he called me when I was sitting in the emergency room when he got to Afghanistan. I said, I’m going to have to call you back, I’m bleeding and I’m in the emergency room. So, I needed him a lot. I needed him to talk to. It didn’t even have to be about the miscarriage, I just needed to talk to him.

Caitlin: Saying goodbye before a deployment, what is that like for you? Specifically with a child.

Meta: At the deployment ceremony, I’m trying not to cry, but I’m still crying. I was trying to take as many pictures as possible with them together because I knew he’d be coming back to a completely different child. And at the time, because I was pregnant, we were trying to figure out the plan for where I would deliver, would I work? And I was scared. I was pregnant and I had a nine month old. And I was like, how am I going to do this without him? It was all scary, but I had to focus on Bo.

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Caitlin: What was the reunion like?

Meta: (laughs) Oh, it was fantastic. It was very different from my first deployment. It was all about me. So it was huge difference. Last deployment it was all about me, and this time it was all about Bo.

I told my husband, when you get home, I want you to step back and I want Bo to come to you.

I wanted him to greet Bo before he greeted me, because it was about Bo. Bo was the one who didn’t understand why he was away and why he couldn’t hold him or touch him.

Last deployment, Robert came home in the evening and this time I think I had to get Bo up around 4:30 in the morning because they want you there 2 hours prior to the ceremony which was at 7:30.  By the time the ceremony started Bo was pretty tired and he definitely didn’t understand all the people, the band, the noise but he was pretty interested in all the soldiers.  At 18 months old though, he had no idea what’s going on or that his Daddy is standing in formation.

Once they released everyone and Robert was trucking it towards us, I leaned down and let Bo stand up and backed away.  Bo started to cry because he was tired, but Robert kneeled down on his level and Bo just went into his arms and wrapped his arms around his Daddy’s shoulders.  As a wife who wanted to touch her husband and have him wrap his arms around her and give her a big kiss, being a mother and feeling this need for them to have their moment first was so important to me and I felt that superseded whatever I might need.

When Robert left, Bo wasn’t walking yet and he’d only ever seen him walk on Skype, so watching my husband have his son walk into his arms for the first time was beautiful.  It was all just beautiful.  There were tears from both of us.  We sat for a long time before we left.  Bo just wanted to hold on to him and of course, Robert didn’t want to let go either.

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Caitlin: So, your husband is getting out of the military soon. What are you most looking forward to?

Meta: No deployments! No deployments. He will be home. I do feel a little jaded when it comes to deployments when I see people post on Facebook, “Oh my husband is gone for the weekend, I miss him so much.” And I’m like, “Really?” (laughs)

I’m looking forward to joining the world where I miss my husband when he goes away for only a weekend.

Caitlin: What will you miss about military life? I know, from my experience, there’s a lot of good that comes with the military.

Meta: Yeah, for sure. I’ll miss the camaraderie most. The spouses I have become friends with have been similar to me. There was a group of women that I became close with during Robert’s 2011 deployment and as is the way of the military most of them had a PCS and weren’t here for the last deployment, but most of us still stay in contact. We miss each other. I have wonderful friends and family, but the women you meet in your military life, they tend to become your family very quickly. The friendships happen faster and some of them become extremely strong, it’s a bond you share.

By the way, I’m not saying these friendships are better and that you lose your friendships with other best friends. These friendships just seem different, almost forged out of necessity. They know what you are going through, they are experiencing it or have experienced it firsthand. They know the lingo, they understand the upheaval, they know the truth about what happens to your soldier while they are gone. They understand the emotional roller coaster and how hard it can be, not only when your husband leaves, but when he comes home too!

I’m not saying your family and non-military friends don’t try to understand, they do, but honestly, it’s very hard to explin, it has to be experienced. It’s just different with these women. You are truly Battle Buddies. You step in for each other. That person can lean on you, shed tears with you, laugh with you and when your spouse can’t be there and you are so far removed from your family and other friends, you need them because they lift you up and help support you just as you do for them. Because of the stress and pain of what you are going through, these bonds form.

Caitlin: What’s your best advice for spouses who are the ones left at home during a deployment?

Meta: I was fortunate to get to be a stay-at-home mom during this last deployment and travel. I would advise spending time with your family. That’s what helped me through the last year, too.  My parents flew me and Bo down to see them several times last year. My mother-in-law also flew us to visit her.  I’m very lucky.

If you can’t go to your family, find other spouses that will be your family and get involved and get out of the house.

Also, getting to talk to my husband daily on Skype was huge. Oh, and take lots of pictures. Lots and lots of pictures.

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My husband and I often talk about how we wish we had met when we were younger because we could have had more children by now. And we wish we had more time together. But, on the flip side, I’m really glad that I have only had to be a military spouse for a quarter of his career. I’m thankful that we’re getting out and my son and any future kids we have won’t have to go through anymore deployments.

 

It takes a lot of work and a lot of strength to get through military life as a family, in tact. Some of the strongest families I know are military families and I have a ton of respect for the way they do what needs to be done and come out better for it on the other end. Do you have experience with the military? What parts of this rang true for you? If you don’t have experience with the military, what surprised you the most? Leave a comment and make my day 🙂

 

He Said/She Said: A Military Family, Part 1

Wooo hoo! I’m starting a new series today on Vital Chatter called, He Said/She Said. I’ll talk to two partners about the same topic to get their differing points of view.

For the first installment, I spoke with Robert and Meta, a married couple in their 30’s who have a two year old son named, Bo.

Robert has been in the Army for 19 years and is currently a Staff Sergeant who works as an ammunitions specialist. Robert has served overseas five times, three times in Afghanistan and twice in Iraq, including a 15 month deployment during the 2007 “Surge.” He has been married to Meta for four years, so he was a single soldier for his first three deployments, he was married for the 4th, and had a son at home for the 5th. Robert is retiring next year.

Caitlin: You were a single soldier for most of your career, including your first three deployments. How does that change deployments when you have a wife and baby at home?

Robert: Dramatically. It changed things dramatically. I mean, I have a family, parents, siblings, grandparents, and they care about me, but having a wife and son, it was different. Really different having someone to come home to.

I was surprised how difficult it was to get on the plane and leave. BUT, it also made it that much more gratifying when I got off the plane, coming home.

Caitlin: I think people who aren’t familiar with the military are surprised to hear that soldiers often want to deploy. Did that change for you once you had a wife and child?

Robert: Oh yeah, absolutely. I think wanting to deploy, especially when I was single, is because life is so much easier over there (during deployments).

Caitlin: How?

Robert: It’s the little things. You don’t have to pick out what to wear. You don’t have to worry about cooking your meals or going to the gas station or buying groceries, or any of the little things. That all goes away. Everything is taken care of for you.

And then when you come home, wow. On my first deployments, it was difficult for me. I noticed myself straining to reintegrate back into society, essentially. When I first got back, I remember going to a restaurant by myself and I was sitting there and ordered my food and all of a sudden I just got overwhelmed with people around me and I had to get up and leave. Because I couldn’t deal with it.

Over time it’s gotten better, especially with this last deployment. It was much easier to reintegrate and I think a big part of that had to do with my wife, Meta, and my son, Bo, just being here for me. I had something to focus my attention on.

Caitlin: So, your last to deployment (to Afghanistan) was when your son was nine months old. What was that experience like for you?

Robert: It was devastating. It was pretty rough. The reality of how dangerous a deployment can be really hit me hard when I realized my life with my wife and son was at stake. I was never more terrified than getting on the plane to leave and leaving them here.

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I mean, that’s our job. I mean, I’m a jumpmaster, and I’ve jumped out of an airplane 63 times. That doesn’t scare me. I’m a thrillseeker. And on my previous deployments, it never crossed my mind that that I might not come home. This time, it really was hard.

During the deployment, we Skyped every day. I think it helped, but it also stressed both of us out. There were many times we got attacked while we were Skyping. And my wife could hear it and would be like, “What is that?” And I’d just have to say, “I have to go.”

I never worried about it until I had something I really wanted to come home to.

Caitlin: Yeah, the stakes were higher.

Robert: Yeah, definitely.

Caitlin: What was the reunion like? I mean, as hard as the separation is, the reunion has to be that much sweeter.

Robert: I was so emotional. I couldn’t wait to get out of formation and run to Meta and Bo. All I wanted to do was go to them.

I really felt that sense of pride of coming back home. I made it through the deployment. It was the last one and now I’m going to be with my wife and son.

I picked Bo up and he just latched on to me. He wouldn’t let go.

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Caitlin: You know, I think people have an idea of what it’s like to be part of a military family, but what is something that you think people would find most surprising.

Robert: I think that the servicemember is at the disposal of the military 24/7. It is not uncommon to get a call at 8pm and have to rush in. We’re soldiers 24/7. I’ve been called in on Saturdays and Meta has had to just grow accustomed to that.

Caitlin: My husband was in the Army for six years and was suddenly deployed while we were engaged and it was unclear whether or not he would be home in time for our wedding. And people could not believe that he wouldn’t just get sent home for our wedding.

Robert: Right, exactly.

Caitlin: So, you’re going to be retiring soon. What are you most looking forward to in civilian life?

Robert: You know, I’ve been thinking about this a lot. It’s definitely that if I travel overseas, it will be on my terms. Maybe I’ll have to travel for business, that not that kind of business. Not the kind where people are trying to kill you. I am very much looking forward to that, just knowing that I won’t be in that situation anymore.

Caitlin: What do you think you’ll miss the most?

Robert: I’m going to miss a lot about the Army. I’m going to miss leading soldiers, I really am. I have loved being a non-commissioned officer. That sense of camaraderie. That’s something that is born in the Army and that once you make a friend, especially the guys you’ve deployed with, it’s one of those things that lasts a lifetime.

Caitlin: What’s your best advice for balancing work and family and getting through the hard times?

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Robert: The thing that I think helps with Meta and myself is that we’ve always had this saying, “Always kiss me goodnight.” So, we always talk it out. Sometimes the talking gets heated, but at the end of the day we love each other and we’re doing everything we can to make it work. So, we have that good night kiss and it’s like, hey, we’re going to get through it.

Stay Tuned… on Thursday I’ll talk with Robert’s wife, Meta, for her side of the story!