TRANSCRIPT:
Michael Kutcher (00:00): I recall the position or the cardiologist. He understood that I wasn't really understanding and he made sure that he'd look me directly in the eye where he told me that you have three to four weeks to live.
Jason Benetti (00:17): Welcome to Let's Talk CP, the new podcast series about all things Cerebral Palsy presented by the Cerebral Palsy Foundation. Each episode features different clinicians, parents, people with CP, and other experts talking about ways to help you better navigate your journey with CP. I'm Jason Benetti, play-by-play announcer of the Chicago White Sox and ESPN, and I have CP.
Cynthia Frisina (00:45): And I am Cynthia Frisina, the vice president of the Cerebral Palsy Foundation, mom of a daughter with CP, and CP research advocate. Today, we have a fantastic episode with my very good friend, and CP and disability advocate, Michael Kutcher. Michael, welcome.
Michael Kutcher (01:06): Thank you. Thank you. I appreciate you having me on.
Cynthia Frisina (01:09): You and I have been friends for a really long time. I was trying to think of how long it's... It's been, I think, 12 or 14 years? Can't even remember.
Michael Kutcher (01:20): I think it's around 10 to 12 years. I seem to lose track of time these days.
Cynthia Frisina (01:27): I know.
Michael Kutcher (01:29): It's been a long, long friendship and a great one along the way.
Cynthia Frisina (01:35): It sure has. And so, now that we've launched this new podcast series, Let's Talk CP, you were one of the first guests that I actually really wanted to have on. I know everyone is going to want to hear what you have to say and we're going to a really great, uncensored conversation about all sorts of things, CP-related, life, all of those things. But first of all, I thought it would be great for our audience to hear a little about you with your background, and what all you up to these days cause not only of course, are you a Cerebral Palsy advocate, disability advocate, you're on the Cerebral Palsy Foundation advisory circle, but you're also a husband, you're a father, you're doing lots of things including working on writing a book, which we'll talk more about. But, could you tell us a little bit more about who is Michael Kutcher?
Michael Kutcher (02:34): Yeah. Wow. When you mapped all that out, it really sounds like a guy that has his plate and is busy. [crosstalk 00:02:44]-
Cynthia Frisina (02:44): Yeah, well you are.
Michael Kutcher (02:47): Yeah, where I am today, I continue to be an advocate for Cerebral Palsy but disabilities all around. That journey got started, I'm sure we'll talk about it, but that journey got started about 10 to 15 years ago and much with your support and friendship along the way. But along with that, I found another cause that's new and dear to my heart, no pun intended, with my heart transplant, but I found myself drawn into organ donation, advocacy as well. The importance of trying to make a difference in that community. I live here in Denver, Colorado I've got three great kids and a beautiful wife and a full time job as well, working for a large pension firm, and you did mention I'm in the final steps of writing a book. My memoirs and my life experiences as well as I also sit on an advisory for an organization that is developing an application to find, cure and assistance for individuals with disabilities [inaudible 00:04:17]. You boil all that together I guess I am a busy guy.
Cynthia Frisina (04:24): Yeah, that sounds pretty darn busy, I'm glad you could take the time today to join us on our podcast and there's so many things that I want to talk about. But what I want to start with before we get to your book or how you got involved with becoming a disability advocate, I want to walk all the way back. I want to go back to the beginning of your story and that is when you were... Cause you always tell this story and it's a great story about how you are twin and aren't just a twin but you were a surprise twin. I remember your story, I'm telling that and I thought that would be a great place to start just for our audience to walk through that beginning of Michael Kutcher and your growing up time if you wouldn't mind sharing some of that.
Michael Kutcher (05:18): Yeah surprise twin is the way that I put it, back in 1978 when my parent were getting ready to have their second child, I have an older sister as well but when they went to the hospital for delivery they only thought they were having one child. And little did they know that two hour prior to birth the physician notified them that there was actually two and that there was a little me in there that they could detect, moments after my brother was born I was born as well. I was more so a preemie where my brother Chris was born around six and half pound I was around four and I required some additional oxygen and some time in the NICU, about a month I was able to go home and be with my family. So it's a funny story that I like to tell just because you never know when unexpected things are going to arrive and when surprises come up and I think that was probably one of the biggest surprises within my parent's life.
Cynthia Frisina (06:41): Yeah, it's pretty crazy, nowadays most women know if they having twins but back then not so much and so that is a really interesting story and it sets the stage, twins do have... There are cases of CP where one twin might have CP and one doesn't but for you I think you didn't know or your family didn't know if recall the story correctly for a while that you had a diagnosis of CP. And so I think our audience would really love to hear a little bit about that and how it was for you growing up especially having an older sister and then a twin brother, how your CP either played a role or didn't play role.
Michael Kutcher (07:35): You right my diagnosis wasn't until later, till I was about three years old. My mom really recognized that there was a difference in development between myself and my siblings. Where she went to the physician, the physician told her everything was fine, that I were trying to catch up with my siblings. But mom paid demanded answers and really saw the signs that I wasn't developing as well, and as said demanded answers and when she finally got the answers, the answer she was looking for. CP comes in all forms and shapes and sizes and sometimes there's miss diagnosis because they don't really know where to put you in what category and which what disability. So they look at all of my developmental setbacks and disabilities and they put me in the category with having mild Cerebral Palsy at that time. And really back in the early eighties even in some respects later on in years and today there wasn't really a lot of treatment or resources available. Not like my mom could go to google and go to the Cerebral Palsy foundation website and find all the great resources and people within the community and definitions and treatments. She was really on her own and they told her what the issues were, my mobility issues and speech issues, hearing, eyesight everything that as time went that we kept uncovering. And my mom was-
Cynthia Frisina (09:52): Cause you grew in Iowa Cedar Rapids, Iowa right?
Michael Kutcher (09:53): Right, yep Cedar Rapids, Iowa so we not even in a big city to be able to even have more resources if there were any. Maybe cal Cedar Rapids, a small town Iowa but they just weren't available so my mom made it her mission to develop these resources on her own. She would take me to the swimming pool to do swimming lesson to strengthen my muscles, she would have me doing some [inaudible 00:10:32] things in the home right along with my twin and my sister as well.
Michael Kutcher (10:37): It was very encouraging to have my mom [inaudible 00:10:41] along the way and be so involved in my development and increase in my development but within my family was really a story about inclusion because the whole mantra was that Mike can do everything that Chris and Tausha can do and for the most part I did. I would just have to try a little bit harder if I wanted to succeed, and that was awesome growing up in my family with that type of inclusion and to be honest with you I really didn't understand my disability for many, many years. Because it was never a focus in family.
Cynthia Frisina (11:29): How old were you when you think you realized that you might have a challenge or a difference, especially having a twin, a same gender twin did that make it less apparent or more apparent than someone who didn't have a sibling or wouldn't have that family dynamic.
Michael Kutcher (11:54): It was interesting because, I think I always knew but I never really could pin point what the difference was. I always knew, I'm the only one in the family wearing glasses, I'm the only one in the family that needs to wear a hearing aid or have to go to speech class but I wasn't old enough. When you six, seven to even know what a disability was. It wasn't till a few years later I would say I was around 10 or so where my mom was actually a assistant in a special needs classroom for an area school and they were having a picnic. So the family use to come and [inaudible 00:12:54] the kids to come with them in class and my brother and I went to the picnic with my mom and there was a little boy there that had Cerebral Palsy, that was using the [gatewalker 00:13:07] and I was really intrigued by this and he was a great little kid and I played with him on the play ground and for that quick hour two hour event that we had I made a new friend.
Michael Kutcher (13:25): I remember driving home from that picnic with my mom and asked her the question "tell me about Timmy, why does Timmy use a walker and why does he have braces on?" And that's when she explained to me that Timmy has Cerebral Palsy and it was actually the same disability that you have. And at that point it was an eye opener to me that okay A, I am different and B there's actually a name for it. That's where I got the first inkling that maybe I had different circumstances than my brother and sister as well, and I talk about growing in my family and the sense of inclusion but I felt that difference outside the family as well. Specifically times on the playground scene and with other kids and they definitely noticed my differences. Playing goes out, to bullying and other things. There was that moment with my mom after the picnic that I finally had turned the light bulb went off for me.
Cynthia Frisina (14:48): How did that make you feel? Cause I think that is not an uncommon experience sadly, of that elementary school bullying or leaving kids out who seemed different or what have you. Especially since you had an older sister and twin brother how did that dynamic work and how did you feel about it?
Michael Kutcher (15:15): It's difficult, I always say there's this phrase that playground can be a happy place but it also can be a very dark place for kids especially in elementary school. And I felt both sides of that and the dark moment it was tough. I have experienced the bullying and the name calling and at that moment you don't know how to register it. You just getting teased and you're picked on, you just being bullied. It makes you sad, it makes you vulnerable, it makes you feel lost in a world of all these kids, that don't have glasses and don't have hearing aid and can maybe run faster and to quote on quote "normal ability things". And so it was a difficult time at school in some points. But in another points I really felt comforted by having a twin brother there. I know there're a lot of kids there on the play ground they being bullied don't have that other sibling there to support them and build them up, and have friends come and befriend you and hold you in your dark moments.
Michael Kutcher (17:06): I can't imagine some kids go through today as we see bullying go to what I feel is another level in the world that we live today. But, I think the important thing is even though you don't have a twin there with you or a sibling there with you to hold you up. There are people that you can turn to and there's communities you can turn to and friendships that you may not know that you had that you can tie on to, to assist you through those dark times. And I think as individuals with disabilities when you start talking about bullying it makes us stronger. It feeds into our ability to over come yet another thing because me having to overcome the inability to do somethings that I have to do. That I could or could not do during that time being bullied was to me just another element I had to overcome and preserver through.
Cynthia Frisina (18:28): Yeah, certainly when you are a kid that is not a pleasant experience at all and-
Michael Kutcher (18:36): You don't understand it, and understand why people can be so mean and now that I'm older I have children of my own it really starts in the house, it really starts in the household with the family. And my message to anyone that's listening that doesn't have children that go through bullying is it starts with you, it starts with you explaining to your children that there are people out there with differences and with different abilities and that are different than you. And the story about accepting of other people, and the knowledge that even know people don't have the ability to do things then maybe you do, and you take for granted every day that they still have the ability to be good people. And they still good people and they can teach you a lot if you just open your ears and open heart and befriend them.
Cynthia Frisina (19:52): No that's absolutely true, and speaking of difficult times after elementary school when you entered middle school I think you had another really difficult time period, surrounding what you referenced earlier and why you so passionate about organ transplants. I wondered if you might share a little bit about that experience with our audience. Middle school, even in the best of circumstances is tough for any kid but for you, you had some real challenges, be great to hear your story.
Michael Kutcher (20:34): Moving to middle school is a different challenge, it's just another step in life and as I see my kids go from elementary to middle I'm reminded of just those social challenges that come with that moment. But for me going into middle school and through middle school was disruptive, it was the year of my middle school eighth grade where I became ill and we thought I had the flu. It was the middle of winter, actually right around this time and it was actually on the 23rd of November, I'll never forget it. It's when I was admitted to the hospital because my mom sensed that just wasn't getting better of what we though that I had the flu. So where I was admitted to the hospital they realized through x-ray that my heart was actually four time the size of a normal heart and from there I would see a specialist, a cardiologist and it was later determined by a cardiologist that my heart was failing and I need a hear transplant. The time frame was roughly three to four weeks to get that transplant.
Cynthia Frisina (22:12): Wow, did you know that were you aware that it was that dire of a situation.
Michael Kutcher (22:20): No one needed to tell me how dire it was, I picked it up slowly through the conversations that the cardiologist and my family were having. At first when I was told that I need a heart transplant, I remember thoughts going through my head specifically how long I am going to be out of school, and the only other hospitalization that I could think of was having your tonsils out where you get a lot of ice-cream. It might have seem like how much ice-cream can I have. At 13 years old you just don't understand what's going and even hearing the word organ transplant I don't even know what that is. So for some reason I thought that there were just a pickle jar on the back, basement of the hospital with a heart in it that they could just give me and it would be okay.
Michael Kutcher (23:30): I didn't really comprehend how serious it was until the conversation around time frames and having three to four weeks, really jogged me and I recall the physician or the cardiologist, he understood that I wasn't really understanding, he made sure that he looked me directly in the eye when he told me that you have three to four weeks to live. And that's the statement I'll never forget, a statement that can definitely wake you up.
Cynthia Frisina (24:16): Yeah that unbelievable I remember you talking and telling me about that story and just how incredibly... I don't even know what to say about that situation how your family railed around you.
Michael Kutcher (24:34): It all goes back to family support and those three to four weeks that I had, going through that traumatic experience. There were ups and downs with my health and I really got a sense of community, a sense of the loving family that I had, the friendships of a lot of things, of life. When you given a... For some purposes call it death sentence in a way you really reflected on what's important in life. It makes you appreciate what is important and reflect upon that and to finish up the story three to four weeks passed. It got really dicey and they came down to a 48 hour window, it's were I needed to receive my transplant and by whatever powers there are to be thankful for, and the thankfulness in generosity of selflessness of my donor. I'm here on this podcast 29, 30 years later.
Cynthia Frisina (26:03): That's unbelievable, I know and you have been a great advocate for organ donation ever since and your heart is beating well, strongly all this time. And all the time that I've known you, I haven't known you to have any real subsequent issues related to that since them I think right? In terms of your health.
Michael Kutcher (26:31): Yeah, I'm as healthy as I can be and I'm so grateful because the odds were against me, the odds are still against me and it just seems like my whole life is up against the odds I don't really care. It's whole thought process of what you going to do? You either can accept what occurred and find the positive in it or you can be a victim. And you know me well enough I just choose not to be the victim.
Cynthia Frisina (27:14): You've never been a victim, that's one of the things I love about you, that's for sure. And so that's a good segway to my question, because one of the things I really want to talk about with you is what's it like? You've now had a heart transplant, you have CP, you now in high school... We going to go to the high school years... You're in high school, you are interested in dating and all those things, thinking about the future tell us about that. You've got an older sister, you have a twin brother, you're entering the high school years, and all the things that come along with that and I think you have some pretty interesting insights and experiences that happened during those years. It's not all smooth sailing, I know that. So sharing with our audience a little bit about your high school experience I think would be great.
Michael Kutcher (28:21): Yeah, high school was an interesting time frame for me. I had some family dynamics that moved me from one high school to another and I ended going through school in a very small rural community with a small student base versus bigger student base in Cedar Rapids. And high school for me was really about starting to find my own identity and that was mainly... A lot of that's due to the twin thing and am I going to be associated with my twin for the rest of my life or through my high school years or am I going to branch off and do my own thing and find my own groove so to speak. So it was important to me find out who Michael was and find my own groove, so I was exploring doing that but also along doing that I was trying to find my niche, how to deal with my disability, to deal with my transplant. I was making changes within myself and my surrounding to forcibly mask my disability.
Cynthia Frisina (30:01): What does that mean? What do you mean?
Michael Kutcher (30:07): I didn't feel that my hearing aid was affective for me that much. I didn't like the stares in high school with my hearing aid, so I learnt to adapt. Stopped wearing my hearing aid and I learnt to only hear out of one ear, and my brain's adapted to that. And also I got rid of the glasses, got some contacts and I tried to fit in more because I didn't want people questioning why I had hearing aid or questioning why I had glasses. It just was these big [inaudible 00:30:58] glasses when my twin brother doesn't have these.
Michael Kutcher (31:02): So I started to change some of that, I have a very mild form of Cerebral Palsy so it doesn't really come through to the naked eye. So I tried to mask that the best I could , because I didn't want the societal view to come pawn me as an individual with a disability. Because in my mind those informative high school years the question is what's the female population of the high school going to think, they weren't going to date me. Am I still going to be able to make friends, it's all about acceptance in those years, with the cliques and the varies things and I really wasn't mature enough to be able to accept my disability through those high school years.
Cynthia Frisina (32:13): Yeah, I think that's hard for anyone and especially probably having a twin, any twin just even siblings that are still in the same high school with you. Do you think that made it harder or easier, or a little bit of both.
Michael Kutcher (32:32): My brother made it definitely made it easier, he's always been made it easier, cause he always supported and been the one person that is always by my side and my champion. So I think there's a level of support that I'm really thankful for and Chris and I in high school that's where we started to divide and go our own separate ways, find our own identity so to speak. So as much as I say that he was there for and [inaudible 00:33:16] support me and stuff he was off doing his own thing. He was more the jock than musical drama type guy, and I was not so much. Not into sport, and into relationships and friendships and music.
Cynthia Frisina (33:41): I remember you telling the story to me and maybe you would be willing to share it on the podcast. I think this was in high school when you were playing basketball or shoot baskets with your brother and you had a tough love conversation of some sort. Is that something you'd want to share?
Michael Kutcher (34:10): Yeah, that actually happened more so prior to me having my transplant, but it's a great story-
Cynthia Frisina (34:21): Yeah that is a good story.
Michael Kutcher (34:22): So when we were roughly around 11, 12 years old right after we had the conversation with my mom about Timmy, and the disability it was the eye opening conversation around my disability with my mom. Chris and I were in our back driveway and we were playing the friendly game of horse, I was actually losing at the time, I know he's still is to this day a better basketball player than I am. I was behind in letters and we were down to the final letter and he went underneath the hoop and he called a shot. And what that means is when he call you got to do everything that the other individual does, and he actually called the shot being a right-handed shot. And when he made the basket he was happy, he thought he won the game and I though I could sway rules of the game because my Cerebral Palsy doesn't allow me to have as much mobility on my right side as my left.
Michael Kutcher (35:56): So I took the opportunity to actually shoot the shot with my left hand. And it was at that moment where he confronted me and said " hey you didn't shoot the shot, exact way as I said it". And I proceed to try sulk and explained to him that he was actually cheating because he knew I couldn't really shoot with my right hand as well and he was taking advantage of my disability, I guess within the game. And at that moment he shot me straight and said "hey you can't play the victim here, you can't always hold this card as much as you think I'm bending the rules, you bending the rules as well, because you can't use your disability and your inability to shoot with your right hand as an excuse, as a workaround". He said that he doesn't have the ability to make the shot for me and no one else can come out and make this shot for me that if it's a right-handed shot I got to attempt and do the best that I can do to make that shot.
Michael Kutcher (37:38): And I think it's a valuable lesson. It's one of the greatest lessons I've ever learned in my life and it sticks with me to this day. There's going to be things that we struggle with doing and there's going to be obstacles that we might not be able to overcome but it doesn't mean that you shouldn't keep trying and trying to make that shot and overcome those obstacles. And I lost that game of course but I walked out that court as winner, I feel on that day because it empowered me. That conversation did it motivated me to work on my disability in different ways.
Cynthia Frisina (38:43): Yeah, I always remember you telling me that story, now I want to move to youR college years. I feel like I'm walking through you decades. But I think you've got some great lessons and things that actually lead up to your decision to become an advocate in this field. Which you haven't always decided to do, but before we get to that I think college experience and young adulthood, you have some really interesting insight there as well. I wondered if you might want to share a little bit about how you went through the process of self discovery and just some of the challenges and ups and downs of that college, young adult time frame.
Michael Kutcher (39:37): My college years were interesting and somewhat limited, they were limited because did my health issues predominantly my heart issues to be honest with you my grades I didn't find myself going to a larger university and being able to live the college experience [inaudible 00:40:09]. My brother went to university of Iowa and I was [inaudible 00:40:15] and I opted to [inaudible 00:40:19] day community college for a couple of years and then also move on the other two years, three years at smaller university in Cedar Rapids. So that [inaudible 00:40:36] my college exposure and ability to really to interact with the typical college life, but college was a little like high school it's where I had the contacts, got ride of the hearing aid trying to fit in, trying to find my groove and my own identity in the college world. And I worked through obstacles there of course finding employment and doing somethings so it was really a challenge navigating college as well, I think with some disabilities I think there is some need to on the learning aspect of things I found it difficult to concentrate on my study and make a focus and it was a challenge for me to go to that next level in college with the studies as well.
Michael Kutcher (41:51): Maybe not disability related but one of the more fascinating things is just what occurred with my family dynamics. My brother went on his own and followed a dream of his that he always had to be an actor. And it's not every day that during college you... His acting actually started as a modeling career and it's not every day that your brother comes home moving to New york to be a super model. That occurred in college, and he since going on to do great things and be a household name and I couldn't be prouder to him and his accomplishments and both on a personal and professional level and the causes, philanthropy everything he does it's great to see and I'm learning, I'm so proud of him along the way.
Cynthia Frisina (43:04): Now let me ask you a question. We've never have said his name, I didn't say it and you haven't said it yet, cause you called him Chris which actually is his name, but his middle name is Ashton.
Michael Kutcher (43:16): Yeah.
Cynthia Frisina (43:20): So was it in college he switched to using Ashton as his acting name?
Michael Kutcher (43:28): Yeah sorry to confuse the listeners on this, my brother's real name is Chris, within the family circle he's always going to be Chris.
Cynthia Frisina (43:44): Thank you for listening today to my conversation with Michael Kutcher, this is part one of a two part series so stay tuned for part two coming soon.
Jason Benetti (43:53): Thanks for joining us for this episode of Let's talk CP, I'm Jason Benetti, CPF ambassador and sport television announcer if you like our show and want to know more please visit our news CP resource page at cpresource.org where you can listen to all of our episodes and subscribe so you'll never miss a show, while you at if you found value in Let's talk CP we'd appreciate a rating and please tell a friend or another family about the show to help others and increase Cerebral Palsy awareness and education. Be sure to tune in to Let Talk CP for our next episode.
Speaker 4 (44:31): This podcast represents the opinions of our guests, and the content should not be taken as medical advice, each person and situation is unique so please consult your healthcare professional for any medical questions.