On and Off The Spectrum
How do families react, respond and reorganize after receiving a potentially life altering physical or mental health diagnosis, either for themselves or for someone they love? Dr. Esther Hess and Dr. Ann Kirsch, two experienced and well-known psychotherapists offer strategies, guidance and realistic hope through some of the toughest times that families can face.
On and Off The Spectrum
When Forgiveness is Extra Hard: An Expanded Conversation with Rabbi Yisrael Bernath
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
The podcast episode features Dr. Estie Hess, Dr. Ann Kirsch, and Rabbi Yisrael Barnath discussing the complex topic of forgiveness, particularly in the context of parenting children with developmental delays or disabilities.
Stay in touch!
This podcast is a conversation, and we’d love to hear from you. If you have questions, topics you’d like us to explore, or are interested in being a guest on a future episode, email us at onandoffthespectrumpodcast@gmail.com
Music
Composer / Writer / Author: ROSSANO GENTILI - SIAE IPI: 161539866
Good evening, everyone. This is Dr. Estee Hess. And I'm Dr. Anne Kirsch. And we are once again doing our wonderful podcast on and off the spectrum. We have had a return guest, Rabbi Israel Marnath, who is a rabbi in Montreal, Canada. And thank you again for joining from the East Coast, where it is quite a bit later than we are enjoying this hour of Twilight. But we specifically invited the rabbi back because we've heard from so many of our viewership about how important the topic of forgiveness is. The exercises that you suggested in your workbook are wonderful. But people have brought to the forefront some pretty difficult subjects. For example, uh my specialty, both of our specialties actually, are children and families having to do with developmental delays. And I have uh one woman approached me and she said, Well, how am I supposed to forgive God? I have multiple children on the spectrum. I have children who are not verbal, I have children who will forever and never be able to be launched. I will have to probably place them in some kind of facility eventually. And I'm looking at this, and they are just babies, but I know my future. And how am I supposed to forgive? And so this is such a um an expansion of the topic of forgiveness that I thought we would present it to you to talk about not that it's ever necessarily easy to forgive, but particularly when the circumstances look and feel very dire and a chronic illness of some kind, whether for yourself or someone you love, how do you approach this topic of forgiveness?
SPEAKER_03And I also want to add that along with this kind of forgiveness, there are other feelings. There's anger, there's um fury at God, at whatever the universe brings to you. There is um why me? There is what did I do to cause this? Mothers say this a lot. Did I do something during my pregnancy? Taking responsibility. Is there something that is in my genetics? Because my husband doesn't have any of this on his on his side of the family that we know of. But on my side, there are all kinds of things. So it gets very complicated and it gets for a lot of people, it gets very interior.
SPEAKER_01So we promised you a hot topic, and uh, but we also know on the eve of for those who do acknowledge that the new year is fast approaching, this is the time where we do some emotional heavy lifting overall. And uh I thought this was a very good topic to help launch that experience.
SPEAKER_00Well, thank you for having me back. I'm honored to be back here.
SPEAKER_01Please.
SPEAKER_00First of all, I want to really extend my heartfelt connection and love towards those people who are asking this question. It's not an easy question, it's a very difficult question. It's a question that needs to be held, it needs to be coddled, and I'm gonna try my best to slowly unpack it, but I don't know if we'll be able to fully unpack it tonight. And I think that having this opportunity, even having this conversation, is so powerful. The first thing that comes to mind when you ask the question and and your series of questions, is often when we hear the word forgiveness, we usually imagine that somebody did something wrong. Somebody betrayed me, someone hurt me, someone owes me an apology. But there's another kind of pain. What happens when nobody did anything wrong? When a child is born with a profound disability? What happens when a diagnosis enters a family and never leaves? What happens when parents spend years and and sometimes decades navigating hospitals and therapies and appointments and advocacy and exhaustion and fear and financial pressure? Like who who exactly are they supposed to forgive? And this is a a question that I'm sitting with it. And I think I think sometimes forgiveness is not about forgiving a person. Sometimes forgiveness is about releasing an argument with reality. So the first thing I would say is that the parent is not forgiving the child. The child has done absolutely nothing wrong. And a parent can can love their child ferociously, completely, and still carry enormous grief. And those two things are not contradictions. You can adore the child sitting in front of you and still grieve the future that you once imagined. You can feel you can feel enormous gratitude for this beautiful soul that you've been entrusted with, and say that this is not the life that I thought I was gonna have. And that doesn't make you a bad parent. It makes you human. And so this forgiveness work is not forgiving your child. Maybe and I'm just broadcasting live here, I haven't really processed it fully, but it may be forgiving life, it may be even forgiving God, if we can talk about this on a more uh spiritual level. It may be forgiving a spouse who sometimes responds differently than you do, or forgiving relatives who disappeared because they didn't know what to say. And maybe the hardest forgiveness of all sometimes it's forgiving yourself. And I want to, if I may, focus a little bit on the grief. Because we often think that grief is about losing a person. We can also grieve a dream.
SPEAKER_04Yes.
SPEAKER_00A parent has a child, and almost instantly a whole imaginary future begins to form. The first words, the the first steps, the school, the friends, the independence, and one day they'll get married. Even in our tradition, there's a beautiful blessing that we give to marriage and to a life of good deeds and and to independence and and this wish of grandchildren. And the truth is that no one's been promised any of those things. But somewhere inside we write this story, and then suddenly the child the st the child is born and the story changes. And that can create a very complicated grief because the person you love is right here. So the parent sometimes feels guilty even acknowledging the grief. Like, how can I be sad? I I love my child. But love and grief are allowed to sit at the same table.
SPEAKER_03Yes. And it's a split second change from what you thought your life would be to what you know or and don't know in a split second.
SPEAKER_00Exactly. Exactly. You sometimes grief is simply just just love encountering a reality that you never expected.
SPEAKER_04Yes. Yes.
SPEAKER_00And the problem, I think, begins when we tell people that because they love their child, they're not allowed to mourn. And then the grief goes underground. And underground grief, I don't have to tell you this, it doesn't disappear. It just gets heavier.
SPEAKER_01Mm-hmm. And angrier.
SPEAKER_00And angrier.
SPEAKER_03It sits deep and it never goes away unless someone helps you deal with that and says the words that you're saying.
SPEAKER_01So what are some of the words, Rabbi, that you would, and you know, if I may call you Israel, absolutely thank you. Because, you know, when we first met, you made a point not to use your rabbi title in the title of the book. Um but I think here maybe this is actually where being the rabbi is important, or the priest or the pastor. Um, if indeed people go the spiritual route to try to have some kind of understanding, some meaning to what appears to be incomprehensible.
SPEAKER_00I will put on my rabbi hat for a second because I think it'll help here. I want to talk about where forgiveness begins. Because I think in this very fragile space, we need to go back to the basics. In the book, I talk about a zero-to-one moment. Before forgiveness, before we try to reframe or try to find meaning, there has to be honesty. Just sitting with what hurts. No uh inspirational quotes or or theology or the worst. This is what I think is the worst. Oh, everything happens for a reason.
SPEAKER_03Oh yes. How awful. Yes.
SPEAKER_00Awful. Yeah, I can say that up to myself. But to say that to someone else and just to sit with it, this hurts. I am tired. I am angry. I am jealous when I watch other families. I don't understand why this happened. I love my child more than life itself. And sometimes I hate how hard this life is. And if I can say this and putting on my rabbi hat, this is not a failure of faith. This is the beginning of faith. Because you cannot heal a feeling that you're forbidden to feel.
SPEAKER_01Not forgiving not I have to feel the feeling. You have to find out have access to that feeling. To start the process of forgiving. Yes. Yes.
SPEAKER_00If you're gonna uh if you're gonna suppress the feeling, then we can't even start this process.
SPEAKER_04Yeah.
SPEAKER_00And and suppressing the feeling is okay because society almost kind of sets us up to suppress the feeling. So I it's not shocking that somebody would would would naturally do that. And just if I could say this, just the noticing is so powerful. Just noticing I am suppressing the feeling. I don't want to be in reality right now. And sometimes it's too hard. And time is a beautiful thing. Sometimes it's not the right time. In Judaism, we value time most. We actually sanctify time. We don't sanctify space. Other religions sanctify space. We sanctify time. And sometimes it's not the right time. It could be the right person and the wrong time. I say that to people dating. And if it's the right person and the wrong time when you're dating, it's the wrong person.
SPEAKER_04Yes.
SPEAKER_00That's how valuable time is.
SPEAKER_04Yes.
SPEAKER_00And it's okay to say this is too raw, this is too real, this is too shocking. I'm not ready for this.
SPEAKER_03And I don't know what to do.
SPEAKER_00I don't know what to do.
SPEAKER_03I don't know who to ask. And when a parent, when parents have a child that has a disability or multiple disabilities, often doctors don't offer a list of people to call. This is a contact, this is a person, a nurse or someone comes into the hospital room to help. No help is given, and you're sent home, and you are supposed to figure this out on your own. And that is so unfair. And I have heard that story more times than I would have liked to. And there's so much help out there. There's so much help.
SPEAKER_01I think maybe, Rabbi, could you also speak to a different concept of shame? Because some people think to ask for help is a weakness. Some people think to ask for help is inappropriate. Some people think that asking for help no one will listen, and so why bother? And so I think that there are people who might avail themselves if they realized that they would be embraced.
SPEAKER_03But asking for help is an acknowledgement of a problem.
SPEAKER_01Yes.
SPEAKER_03And if you ask, you have to be able to acknowledge a need. I I remember a woman coming in with her baby, and this beautiful baby, and clearly there was something wrong. And I said to her, you have a beautiful baby. And she said to me, But don't you see there's something wrong? This is not a beautiful baby. And I said, Okay, this is where we start.
SPEAKER_02Beautiful.
SPEAKER_03And she looked at me like she like she couldn't take it in, and I understood that, and I said, We're gonna go slowly. What I see is different than what you've what you see perhaps, but what you have experienced, and I want to know everything that you've experienced. And she took a deep breath, and she's and to her credit, she started to talk. Just her and me and this beautiful baby on a blanket were sitting on the floor, and she starts to talk. And that was the beginning of healing.
SPEAKER_01So Rabbi, help us. I guess we're asking as clinicians, you know, this is this is a hard one. How do we help people recognize the opportunity to start the conversation?
SPEAKER_00It's the hardest three words in the English language. I need help. And we can invite people to have a conversation, but we can't force it. And sometimes, especially, I can only imagine someone having to deal with such a difficult, difficult situation, a shocking situation to even start this conversation. I mean, I love what you said. Getting down on the floor, and just for me, that image of you sitting on the floor with this new mother is exactly where it begins. You don't even have to say a word. Just sit there and hold space.
SPEAKER_04Exactly. Exactly.
SPEAKER_00I think there's some people that are gonna listen to this episode and they're gonna say, Wow, I need this now. And some people are gonna say, I want to earmark this. I'm gonna save this because I I can't handle this now, but I do want to have this conversation when it's the right time.
SPEAKER_03Right. And that's a wonderful thing to be able to say, not now, but I know I will.
SPEAKER_01In your book, one of the many attractive features is the idea that it's an exercise if you want to use it as such. And I'm wondering, is there a kind of exercise in this particular direction that individuals, families, parents can start the process so that they can organize themselves to be ready to start the conversation, to be ready to begin to explore. Because I do think that, and by the way, let me make a point to say the book is, and we highly recommend it. It's called The Forgiveness Experiment, and I think this is somewhat of an experiment right here and now. How to create an exercise to help families who are experiencing the unimaginable, and we want to let them know that the conversation, the opportunity for the conversation exists, and maybe here's how, and I'm I'm going like this to say, okay, you know, your table. But um, but I I think sometimes what I see from my families, if I give them an exercise that appears initially pretty simplistic, you know, write down so many things, they can they approach you with a bit of eagerness. Oh, I can do this, okay? And that doesn't feel too threatening, and then we'll get into the heavy duty. But I'm wondering if we could, or maybe you have already in the book, created some form of an exercise that can start the engagement process.
SPEAKER_00I'm listening to you, and I'm saying, I really think that we need I have to write some kind of book, which is the forgiveness experiment for people that are going through these difficult situations. I I did not plan this conversation, so I'm just kind of thinking it. In real time, I'll broadcast live. I'm gonna take one of my experiments from the book and I'm gonna see if I can adapt it right now to the situation.
SPEAKER_04I appreciate that.
SPEAKER_00The one of the most practical tools in the book, and the one that I think has really resonated with a lot of people, is what I call the forgiveness inventory. I divide life into three columns. My business, none of my business, and what I call God's business, or you can call it the universe's business. I I call it God, I'm a rabbi, but you can you can call it whatever whatever makes you happy and doesn't trigger you. So for a parent that's navigating a chronic disability, I I imagine these columns like this. My business, right? If I if I had to so basically this is what I do. This is the exercise. I take a blank piece of paper and I divide into three columns. On the top of the right side, I write my business, in the middle, none of my business, on the left, God's business or the universe's business. And then anything that comes in my life, I put into one of those three columns. So, for example, my business would be how I love my child. My business would be how I advocate. How I take care of myself, asking for help, how I speak to my family, how I respond today, whether I allow joy into our home. That's my business. Then there's n none of my business. None of my business would be um other people's uncomfortable reactions to me. The stupid comments, the person who stares at me at the grocery store. The relative who doesn't understand. The friend who randomly stops calling me. I wonder why. I can address some of those things, but I can't control other people's emotional maturity, so it's none of my business. And so I try to, and I get affected most by those things that are none of my business, and just kind of clearly putting them into this column. And if it's none of my business, it's none of my business. I'm sorry, I cannot hand I cannot take control of how you respond to my life. It's not my business. It's not my job, it's not my job to control how you're gonna respond to my current life situation. And then there's maybe even to a certain extent the hardest column, which is God's business or the universe's business. And that's why did this happen? Why this child? Why me? What will the future look like? How long will I be able to take care of them? What happens after I'm gone? And these are enormous questions. And it's sometimes parents can carry them twenty-four hours a day. And so my invitation to you is to say, I will carry what belongs to me. I will stop carrying what belongs to other people, and I'm gonna slowly learn how to hand the universe or God back God's job. And I don't think that's giving up. I think it's putting the weight in the right backpack.
SPEAKER_03So for people who are listening, taking in what you're saying, but are not religious and may not be spiritual, but they're still faced with this. I think a lot of people find some spirit when this kind of an event happens. What I say to people is I it doesn't matter to me if you are a religious person or not. What matters to me is if you have something that sustains you, something that you can hold on to. It can be your husband, your wife, it can be the walls of your home, it can be friends who you can speak with. Ultimately, it has to be in your heart to know that this child belongs to you and therefore is not just your responsibility, it is your joy, your passion.
SPEAKER_01I want to compliment you because this is done in real time, and I appreciate your capacity to take what is an existing exercise and adapt it to this very, very complex chronic issue. And um and and and I applaud you as well because I think again you know uh finding religion in the foxhole is you know something that we all can recognize, but there are times that for whatever reason people that's not the direction. And so we're offering really a not a universal answer, but uh the existence of support, different exercises. And I I like the three columns however you want to classify it, that doesn't necessity doesn't necessitate rather that that someone has to abide by a particular religious direction. Because when you're hurting, you're hurting. And whether you however what however you come to terms with that direction, I think this is a start to the conversation. So I want to thank you. I want to thank you for absolutely for for continuing to expand the conversation and you know I hope, if anything, if we've given you another idea for an expansion of your book, we applaud.
SPEAKER_03We will read it and we applaud because it is needed. It is so needed. There are, as you know, there are so many people that are hurting for so many reasons, especially now in the world that we live in, that if, you know, Estee and I talk about this a lot as family therapists, as therapists who work with parents and grandparents and children and babies, if we can help families to raise their children better than they were raised, if we can help them understand what it means to be a good enough parent, then we've done our job.
SPEAKER_01But I'm appreciative again of the fact that what we are experiencing as as clinicians, people are finding us on the street and they're stopping us, and you know, we got our 15 seconds of fame here, you know, oh I recognize you, right? But what they're saying is they're beginning to start having immediate conversations because what they're identifying is the opportunity to begin to bring up these these talks. So I also want to thank the viewers who wrote in, who stopped us on the street, who um shared their personal stories because they said we want to expand this conversation because it it the conversation with the rabbi was wonderful, but it was incomplete to our story. So thank you. Thank you for having for coming on board and for helping us to complete this part of the story, or at least widen widen widen the conversation.
SPEAKER_03Yes.
SPEAKER_01So yes, we want to thank this is Dr. SD Hess.
SPEAKER_03And I am Dr. Ann Kirsch. And we hope that everyone who is watching has learned something about their own personal power in the face of the worst situations that they can find themselves in, that they have power and they have control and they have people they can turn to to ask questions. We are not alone unless we choose to be alone.
SPEAKER_01So, with that, we want to thank Rabbi Yusro Barnath, the author of a wonderful book, The Forgiveness Experiment, which I believe you mentioned is available on Amazon. And I think you mentioned that you're going to be speaking the audio portion of the book or have already.
SPEAKER_00There is already the audio book, it is out on Spotify and Audible. Um I do speak, I it's my voice.
SPEAKER_01Okay. Wonderful. So we got the real deal here. Wishing those who celebrate the start of a healthy and happy new year. And for all of our listeners, we wish health and safety and a good evening. Yes.
