From "Why Me?" To "A Why To Live For" With Harriet Cabelly

Harriet Cabelly's dream of the perfect child was shattered when her daughter was diagnosed with neurological deficits at just nine months old. "Why me?" became her mantra. Another medical crisis in her daughter's life challenged Harriet to practice exercising her muscle of resilience and that defining moment in her life laid the foundation for her new book, Living Well Despite Adversity.

Transcript

Well Harriet, Welcome to Coming Back and thank you so much for sharing your story with us today. Can you start us off with your lost story and the experience of loss in your life? Yes, And thank you Shelby for having me on. So my story goes back many, Many years, But as you'll hear, I live with it all the time because it's around my daughter having disabilities and finding out when she was nine months old, Specifically what her neurological deficits were. Having found that out, I went into my tailspin of grief over the loss of the perfect child. As we all know, We who have experienced having children, Being pregnant, When we are pregnant, We are all in anticipation and gleefully excited and over the top over having a child. Nothing but positivity crosses our minds. So we don't think of, Oh my God, What if I have this or what if I have that? It's just I'm having a baby. So when that dream and expectation gets shattered by a diagnosis of not exactly what you expected, Now mine did not come upon her birth. She had a perfectly normal birth and everyone thought she was doing fine and normal until she wasn't hitting her milestones. So basically, We started running tests at six months old and we got her diagnosis at nine months. So when you have a diagnosis after a dream that you've expected to go well all along, It's pretty shattering. I went into my dark cave of bitterness and rage and why me? That was my mantra. That was my theme of grief, If I can call it that. It was why me? Why is this happening? Did I do something? Why is this universe? Why is God doing this to me? I'm not saying that's a healthy place, But that's where I went. So I couldn't function very well because I felt so angry and bitter and jealous. I had another child and when I would take her to the playground, She was two years older than my second daughter who was born with the disabilities. When I would take her to the park, I found myself not even being able to sit there comfortably because I was just looking at everybody else and thinking, Again, Why me? Why can't my daughter hold up her head? Why can't my daughter start to walk? So I really found that I couldn't even be at the park in a good normal way. So I got myself a great therapist in Evanston, Illinois where my daughter was born and I was in therapy with him. His name is Dr. Ken Moses. He is amazing. He saved my life basically, Certainly psychologically and emotionally. I was in therapy with him for a year, Ranting and raging, Venting and doing all the stuff I had to do to get my, I'll call it toxicity of grief out so that I could move on as they say. Now moving on didn't mean waving a magic wand and she was going to be normal. Moving on for me meant that I could get myself in a different place, Figure out how I was going to incorporate my new normal as we say into my life and figure out what kind of parent I was going to be to her and what I wanted from her or what my goals were going to be. So that became like what I was looking towards. Through the process of therapy, I obviously never got answers for the why me because we know there are no answers for why me. That's the universal existential question, Why do bad things happen? But what I ended up getting was just the idea that it's not the whys that matter, It's more how. How will I move on from here? How will I cope? How will I reintegrate a disappointment into my life and create a new life or rebuild my life as I called it? So it became the whys shifted to the hows and the whats. And I really attribute that to going through the process of getting all those feelings out because I think if we don't do the work initially, It does come back to haunt us. I always visualize this tube of toothpaste. If you don't really deal with the main hurt like from the top of that toothpaste where it's supposed to come out, Then it starts oozing and all these little holes start coming out all over the place and you get all this oozing toothpaste and it makes a mess. So it's kind of how I've – that's just my own little visual. If I don't deal with the heavy duty stuff when it's there, It's only going to manifest in other ways at other times and usually they're messy ways. We know how people will self-medicate and numb themselves and try to do everything to take away pain, Alcohol and drugs and all kinds of addictions and acting out behaviors. So I'm a big proponent in working through feelings and as they say, You go through it to come through it. It's not easy but it was what I was drawn towards because I mean I'm a therapist myself, Although I wasn't one at that point. So that's my loss and my daughter today is 35. She's amazing and she well exceeded and went beyond her horrific prognosis back when she was one, Two and three. But that's why we can't hang our hats on prognosis. We have to just do what we have to do and hope for the best. I feel that I've come through it very well and I've rebuilt very well and she's doing well but it's not to say that there are still not times when I feel sad and I still go into my, Isn't it too bad? I think that's very normal. What it is is I don't go back into a deep hole. It's a little bit of a step back if I'll feel depressed or I'll go into my little bubble or cocoon but I come back because I feel like I've gone through the work and I'm able to manage it. That makes perfect sense to me and thank you for sharing that story with us. When back then did you recognize that you're like, This is bad enough that I need therapy or was therapy like your first option? Like you got the news and you're like, Okay, I'm going into therapy. How did you know? I got the news and I am a, I don't know what, I'm a doer. I'm proactive. I got the news and then when I actually started, I had enrolled her in an early intervention program right away. I mean that was per recommendation of the doctors. In the program, They always put up notices and flyers of all kinds of support and resources and lectures and there was a flyer with a lecturer talking in a special ed school on the shattered dream. That was Dr. Ken Moses and he gave this talk to parents of newly diagnosed children. So it was like, Oh my God, I'm going to go to this. I went and I was mesmerized with him and I went right up to him after that talk and I said, Do you see private clients? And he said, Yes, That was it. I was in his office the next week. So it wasn't that I was looking for the therapy per se, But I was right away looking for words and messages and what can help me. And I mean, That's just me. I like talks and lectures and learning and classes and reading and books. That's just who I am. So I was drawn to this lecture. It spoke to me. And that's what resonated with you. I love it. I'm interested now to talk about the dichotomy of having, You say you have another child. I have two others, Actually, An older one and a younger one. Nava, That's her name, Nava, N-A-V-A. She is my middle daughter. So can you talk about the contrast of balancing your three kids and having one with neurological deficits and having two who lead quote unquote normal lives? Like how does grief integrate with that? Do you feel like attention has been distributed the same way? Do you agree for them differently than you would agree for your daughter? Right. So that's a great question because that's a perpetual challenge when you have more than one child because the one with the issues or problems, Whatever word you want to use, Obviously needs more attention just vis-a-vis practicality. I'm taking her to speech therapy and physical therapy and occupational therapy and her special program. So if I have an issue of all the things I had to shuttle her to, She's going to get more attention. But I worked very hard at trying to be cognizant of giving attention and good attention and one-on-one and making it fun for my other kids as well. So for instance, When I would be taking Nava almost at least three to four days a week after school to her other therapies, I would take my younger daughter. Well, I really had to. It wasn't a choice. I couldn't leave her alone and no one else was home. So I would take my younger daughter who's five years younger and I would take her with me. And I always felt bad that she had to like be schlepped along, Be dragged along. So I try to make it fun. I try to be very calm. So we would take games and all different things to play. That became our hour that while Nava was in with her therapist or wherever she was, That would be our bonding time where we would do fun things in the office or we would go out for ice cream or we'd go to the duck pond. There was a nice park near one of the therapist's office. And I remember during fall, We would make leaves and jump in them. And when it was snowing, We'd make snowmen during that time. I carved it out so that those hours would be our time and I did it very intentionally. And as far as just at home, I tried before bed to really talk and give that one-on-one time. I had a daughter. She was two years older than Nava. Again, I was always cognizant of giving the time, But it didn't manifest as much because she was more in her schoolwork and keeping herself in her room more. But again, It is a balancing act and I think that we could really shortchange our other kids if we're not aware and if we're not very intentional about it. I was also very sensitive to the fact that I didn't want to make her siblings feel that it was put upon them to take care of her or like, Well, You're the older sister. You got to do this. You got to do that. Of course, They had to help out, But not where I wanted them to feel put upon or it's a burden and that they're always, Oh God, I have to do this for her and that. I wanted it to be more as they wanted it, Sensitizing but not obligating, If that makes sense. Yes, And I love that verbiage too, Sensitizing but not obligating. You can be present, But you don't always have to participate. That's beautiful. Do you think they know that or see that or acknowledge that from you now? My younger daughter for sure because we've had conversations on it. My older daughter, Yes, She recognizes it. She lives overseas. We don't talk about it that much or engage in that regard on such a deep level, But yes, She is aware of it because actually come to think of it, She's recently told me that when she was speaking to some moms where she lives and where they have some kids with ADD or autism or what have you, And she'd say, My mother didn't enable my sister. My mother really pushed my sister to be as independent as she could. Now that I'm thinking about it, Yes, She's actually come back and relayed to me how to help. She's had a couple of conversations with mommies about using me as an example. So that kind of felt good. Yeah, I was going to say that must feel good. What is the story that led you from the day you found out the news about your nine-month daughter to, Okay, I'm going to make this my heart's truth, The thing that I transmit to others is the truth? Okay, So that's beautifully stated. In order to answer that, I have to move into a different event near calamity that happened to her because that really is what pushed me into if we're going to move into the book. So let me start by saying I have always, Since I'm a teenager, Been interested. I don't know why, But I've been always drawn to the theme of people living well despite. My parents got divorced when I was four. Now back in the 60s, That was not very common. So could I say something like that kind of sensitized me to people having struggles and trying to overcome? I don't know, Maybe subconsciously, But I don't feel like it did. But I was always interested in this idea of how people go beyond their troubles because it seemed that you had two types of people. You had people who would have bad things before them and they would kind of crumble and become bitter and have miserable lives. And then you'd see other people who had terrible things happen and they'd be smiling and going on. And it's like I would wonder in my late teens, Early 20s, How is that? And I had a boyfriend at the time and this was a pretty defining moment too. I had a boyfriend when I was 18, 19 whose mother had gone through some horrific things. She lost a child in a car accident. She had a child with CP, Cerebral palsy. She had breast cancer. And I'm looking at this woman and I'm thinking, Look at her disposition. Look at her attitude. This is like amazing. So I was very inspired by her. So I did readings and I was just, Again, It was something I was always interested in. And the first time I ever read the book, Man's Search for Meaning by Viktor Frankl, To me that's a life transformative book. And it's all on this theme of transcending adversity. He was in Auschwitz and many other concentration camps and how people can go through horror and come through it and come through its standing and pick up the pieces and go on. I won't get into the book, But it's highly recommended as a must read in my opinion anyways, And it is a classic. So that's what I'm saying in terms of I always was interested in this theme. So now fast forward in terms of my daughter of 17 years, 18 years. She's 18 years old and she has a condition, A medical condition having nothing to do with her disabilities called ulcerative colitis. It's inflammatory bowel disease. Some people have Crohn's, Some people have colitis. She was diagnosed with colitis at 12. It's like, Oh God, Now she needs something else. It's not enough what she has. Now she has something else to deal with. That was when she was 12 and I had to like go back into my own state of how I'm going to deal with this one now. And she managed it and she was on medication and she did well. Five to six years later, She gets a horrific flare up. They can't control it with medication. They try all kinds of things to prevent her from having to have her colon removed. And she was on a lot of immune suppressants. She is the one in a million that came down with a secondary infection that put her basically into a drug-induced coma on a respirator where she almost died. On this respirator in a drug-induced coma for almost four months. Then after that, She miraculously survived and then she moved into a rehab hospital for the next nine months having to relearn everything from picking up her finger to swallowing and breathing on her own. She had a trach and she had to relearn every motoric and bodily skill and function. So that was a year of a medical crisis. Now she miraculously survived, Completely recovered and has her life back. So after that, I said to myself, Whoa, How do I honor this miracle? We all know that when bad things happen, So many times people start foundations and causes when there's deaths and people want to do something big to commemorate a life. I looked at it and said, But I want to honor a miracle. So I started looking and I also said to myself, So how do I just go back to my life as before? What am I, Just pick up the pieces and resume? Okay, So yes, But that's kind of what I did. I went back to my school job. I was a school social worker, But it didn't feel right and I was in terrible angst. I said, I don't know what to do, But this does not feel right for me inside. So I started doing all kinds of things, Looking into all kinds of meaningful things. I raised a service dog to work with the disabled. We were foster parents for a beautiful lab that then passed this test and went on to live with a little boy who has cerebral palsy in Pennsylvania. I did a Patch Adams trip, Clowning trip in Sicily to hospitals and orphanages. I'm not a clown, But hey, I was always enamored with Patch Adams, Who's this amazing doctor. They made a movie about him. So I did that and I just tried a lot of different things. I tried a book, I tried a memoir because I always liked writing and I got a person to write it with me and I got an agent and it got rejection after rejection after rejection. And although we all know that the chicken soup books got about 90 rejections and they finally hit it big, The agent at some point said, Put the project down. This is an evergreen theme, A universal theme of loss and survival. Pick it up again in a few years. So I started a blog. I started a blog called Rebuild Life Now because that was my thing, How we rebuild our lives through adversity. And I decided that I was going to do a project and my project was going to be, I was going to do monthly interviews of people who had to rebuild their lives through whatever challenges or losses they went through. That sounds very familiar. Right. So this tied in well with my theme of life as I call it, Like I said earlier, Since I was a teenager and with going through what I had been through and honoring and seeing and trying to look to inspire other people that there is life after loss or life through challenge. So every month I was able to find someone who had transcended their loss, Their adversities. I looked for a diverse group of challenges. I didn't only want people who were grieving loss through death. So it's many, Many things. It's people, Someone who is blind, Someone who was raped, People who have special needs, Children, People who are special needs themselves, People who have become quadriplegic, People who have just lost the parent, Lost the child. So I ended up with 36 interviews, One a month for three years. They're all on my blog. And at some point people started saying, What are they sitting on your blog? Why don't you compile them into a book? And that became my project. So when I closed up the book of the memoir, That chapter so to speak, Literally and figuratively, And I didn't know what else to do, This kind of evolved. So it evolved over five years and now it came to fruition. The book came out in August. Yay! And I'm cheering for you. I've got chills on this end because literally it's like you feel this – there's a potential to feel a mass amount of failure when an agent says, Put it down. We're not going to do this right now. We've gotten way too many rejections. Try it again another time. There's a potential to feel a mass amount of failure there, But to put that down and be like, I'm still not done with this. I've got this itch for something else, To do something else for three whole years and then another two years and then have that turn into the book is – it's a lesson in waiting, But it's also a lesson in timing and it's also a lesson in I'm making this happen no matter what. No matter what avenue this takes, I'm making this happen no matter what. Right. And it was something that was very meaningful to me. You see, At any point in time, It was very easy to put it down, Not when I was doing the actual interviews for those three years. That I absolutely loved and I was amazed that I could get some of the people I got. I mean I got some named people and like who the heck am I? I'm no Diane Sawyer or anybody, But these people just – they just say yes to me such as Cheryl Strayed who wrote the book Wild. Right before her book hit the bestseller list, I got to her. Meredith Vieira who has been – she was the millionaire person and a TV person at least here in New York. And Temple Grandin who is the advocate for autism and a bunch of other authors. And because I love books, I call myself a bookie, Many, Many of the people I interviewed have written books because how would I find these people? Through book reviews. Oh, This one wrote a memoir? They went through this? I'm going to contact them. And I was just astonished that most people said yes. It didn't have to take me two years. That was my doing because I would put it down and you know, The procrastination, It's not going to go anywhere, What am I doing? But because it was something that was meaningful to me, I said I have to do this. I don't care how long it takes and I don't even care. I really do care, But during the process, It's like I don't care. I'm not thinking about whether it's going to do well or not do well. I just want to know I did this. It's a meaningful endeavor for me. So if somebody were to come up to you and say, What is the book about? What would be your response? It is about people and their ability to transcend their personal challenges and go on to live a good life. I love it. That's a perfect one sentence synopsis. And I'm a little bit curious because you use the word resilience a lot in your book and on your website. If you've uncovered any patterns or if there's like a secret of resilience that maybe you've noticed through all of your interviews and writing. So yeah, And that's a great question on resilience because as I'm sure you know, That's a hot topic today and there's tons and tons of research being done on resilience. Whereas we used to think that you're born with a certain amount and you either got it or you don't, But what they're discovering is that resilience can be grown and developed like a muscle. And that's really the key and that's what I've always thought to myself. It's not that how do we go through life without anything bad happening? No, It's how do we go through life knowing that the bad is going to happen, But how do we cope and live? And that's why I put that word in despite. Despite the bad, How do we still have a good life? The one and only life we're ever going to have. How do we still have a good life despite? And the how is? Through gaining a core strength, I can build. Whatever I have, I can have a little more. I can learn a little more. I can do a little more. I can be a little better. I can be a little stronger, But I have to be intentional about it. It's not just going to come my way. It's a choice. I have to be aware and I have to say I need to do certain things. For instance, When I lived up at the rehab hospital with Nava for nine months, I knew I had to be by her bedside. I was by her bedside 12 to 13 hours a day. I called myself like her cheerleader. But I said to myself, I got to keep myself healthy and strong. I don't want to get cold and be sick and I don't want to pass anything on to her. And I'm not a pill popper and as much as the doctors, One particular one said here, Have a prescription for an anti-anxiety. It's just a long road ahead of you. You may need something. I'm pretty stubborn and I don't like pills. And I said I'm going to try this on my own. If I still can't function well, Then of course I'll take something. So every day I would walk. I intentionally set myself to say I have to do something physical. I have to keep myself strong. So I started walking. In fact, In the dead of winter here in – well, I don't have to tell you you're in Chicago. So we're in frigid weather here too. It's snowing today. Right. So in the dead of winter, I'd be walking on the streets up in Westchester where they don't even have sidewalks and it would be snowing. And the school buses would be passing. In other words, Her rehab hospital also had a school attached so that the kids who were in the hospital rehabilitating could attend classes. So the school buses that would take the kids to and from the hospital would be doing their rounds and they'd see me walking and they'd always honk. There's a couple of bus drivers in particular. Come, We'll give you – we'll drop you back off at the hospital. And I'd always say no, No, No. This is part of my therapy. I'm walking back to the hospital. So I'm saying realize we're not just fixed human beings. We're malleable. We can change. We can grow and nothing is set. It's not set in stone. If I could just say one more thing about that, There's a psychologist from Stanford University, Sonia Lubriansky, If I'm saying her last name right. She researches on happiness and well-being and she put out what they – I think she calls it the pie of happiness. What she discovered, Which to me is fascinating, Is that out of the pie, If you divide it up into circumstances, The things that befall us that we have no control over or some that we do and what we're born with and our attitude and what we input. So here are the numbers. It's 50% genetic, 10% circumstance and 40% intentional behaviors. Institutional behaviors meaning our attitude, Our choices and our behaviors. Now that's a lot when you think about it. That's pretty – that's almost half that we could input into ourselves just through our mindset, Our choices, Our sense of responsibility and how we choose to respond to what happens to us. That's probably the biggest lesson in the book, Man's Search for Meaning by Viktor Frankl coming back to him. The biggest, At least my biggest takeaway is that idea of it's not what happens to us, It's how we respond to what happens to us. The secret to coming back from the hardest things that happen in our lives is resilience. But the secret to resilience is that it doesn't get handed to you. You must start working on that for yourself. You must engage with resilience in order to build it. I think a lot of people especially after loss think that if they just stop doing what they're doing or seek out the right person or the right book that they'll just be handed resilience and it's a practice of coming back over and over and over and over and over again. Right. And I like that word you use, It's a practice. Yes. Absolutely. Absolutely. Every individual has to find their renewed purpose after going through anything bad or any loss or any challenge. So I'm getting back to the quote that I was thumbing through. This one is on purpose. It's by Nietzsche. He who has a why to live for can bear with almost any how. And in this point, The why meaning a purpose, Not the why that I spoke of at the beginning of this podcast which is why me and why do bad things happen but a why meaning the purpose. He who has a why to live for can bear with almost any how. And after people go through terrible things, They have to rebuild that why. They have to rebuild and reconnect with a new purpose. And that's really crucial. And I think when you do that, You have a good shot at carrying on in a hopefully good way. What is your why now? Oh, That's a good one. What is my why now? Wow, I got a thing. My why, I mean I'm just thrilled, I'm just so excited living every day. I can't wait to get up in the morning because to me, The world is like an oyster. So on a big level, I'm just excited about living and always taking on new things and challenges and opportunities and fun things and things that are meaningful to me. But if we want to be more, A little less global like that, I would say I have grandkids, I have my kids, I have work that is so meaningful. When I work with clients helping them move in all the ways I've just spoken of, It's the most transformative, Inspirational work. I mean it's deeply connecting with people. For me, There's nothing better than that. That's perfect. I think that brings me so much joy and I'm so excited to hear that for you both on a global and a personal scale. I think both of those are really important to hold in our hands.