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Hearing the Worst From Your Doctor: Community TV

  • Richard Cohen:

    Eric Lowen is a 1960s character to me.  He is an accomplished musician and vocalist with his own style.  Eric is half of Lowen and Navarro.  When disease hit it was ALS, Lou Gehrig's disease.  Life would never be the same for Eric or probably last much longer.  Eric, before we talk about your health, let's talk about your music.  Tell me about your career. 

  • Eric Lowen:

    Well, I've been at it for a long time, that's for sure.  I would say that it didn't turn out exactly like I hoped for perhaps.  Everyone always hopes for super stardom, but the kind of career that I actually ended up with writing songs that seemed to mean something to people turned out to be, I think, a lot more fulfilling at this point.

  • Richard:

    What kind of a life did you have? 

  • Eric: 

    Well, it was the life that I chose, was the life of an artist.  So it was up and down as far as income went and not always very secure life.  But I managed to have kids and I've been married twice.  I would say it was a great life. 

  • Richard:

    Well, you shouldn't speak in the past tense.  But you do love the stage, don't you? 

  • Eric: 

    I do love the stage as a matter of fact it was only in June that I gave it up because it became too difficult for me to breathe to be able to stay on stage for a long period of time. 

  • Richard:

    How hard of a decision was that? 

  • Eric: 

    It's funny with decisions like that it is so out of my realm.  I find that as I get deeper into my illness my comfort and security is very, very important to me.  And I feel so uncomfortable putting myself out there where I have to sit somewhere for a long time or something.  The decision was sort of made for me.  So I don't feel very conflicted about it. 

  • Richard:

    Tell me if you would, describe your condition for us.  People don't necessarily know a lot about the illness.  Tell me what your life is like. 

  • Eric: 

    My life is I'm mostly paralyzed.  I do have a little bit of movement in my head and my neck and a little bit in my hands.  I still have musculature in the rest of my body but movement is very, very restricted.  I usually I need help with pretty much everything that I do.  I usually am not fully functional during the day until about 2:00 in the afternoon, until about right now as a matter of fact.  And it takes forever.  My routine is so repetitive it is so numbing that sometimes gets very discouraging for me because it just takes a long, long time to do anything.  But I still manage to I have five children, three steps and two natural children.  And they're turning 16 today and on Thursday.  So I manage to be able to have dinner with them and go to their performances and do some activities with the school and so forth. 

  • Richard:

    They must be a remarkable support system for you. 

  • Eric:

    They are wonderful, absolutely.  They're great.  They're a reason to live. 

  • Richard:

    And are they involved with you in terms of day to day helping you get through stuff? 

  • Eric: 

    Absolutely.  They watch me like a hawk.  Sometimes seem to anticipate my needs and we have traveled a lot together since I've been sick.  And we've had quite a few really great adventures.

  • Richard:

    So you don't sound like a victim. 

  • Eric:

    I don't feel like a victim.

  • Richard:

    Tell me about that.  Because a lot of people with look at you and say you are a victim.

  • Eric: 

    Well it was about two or three years ago that I realized that and it sort of absolutely made me break down into tears when I had the realization but it came to my mind that if I had to choose between the physical illness and the lessons that I've learned I would have a very difficult time making that decision.  Because the poignancy and the depth that has come into my life as a result of having to face something so huge has actually added a lot of meaning to my life I think.  And I feel very much a part of humanity as it turns out. 

  • Richard:

    I've been talking to you off and on for a couple of years and you have always sounded like you have made your peace with it or at least you're not letting it get you down.  How do you keep your emotional equilibrium. 

  • Eric: 

    Richard, it is just because I'm happy to hear from you that's all. 

  • Richard:

    Okay, what other reasons.

  • Eric: 

    I'm not exactly sure.  I mean I do have the kids.  I love music and I love my family.  I'm a great supporter of my friends.  I think part of it is just the way I'm put together.  I do get discouraged at different times.  I feel like giving up but my nature doesn't seem to take well to that kind of stuff and I get tired of it.  And I find something just when I least expect it I have a moment that is just very pleasurable and very wonderful, very meaningful, very moving.  And it just snaps me out of it. 

  • Richard:

    It's really sort of a mind game isn't it?

  • Eric:

    It really is.  Yea.  I would say that's exactly right.  I sometimes spend a lot of time in my thoughts because I'm just in a position where I can't change where I am or my surroundings.  And when that happens you know there is a lot that can happen.  There is a lot of different directions I can go to in my mind.  And when it gets really sometimes kind of scary say in the middle of the night when I can't sleep or something I sometimes – I have some friends that have been involved in AA and I say the serenity prayer.  Sometimes almost like a mantra.  And sometimes I just like to think over if I'm not terribly discouraged or anything sometimes I like to just think over the details of a part of my life.

  • Richard:

    Can you recite the serenity prayer?

  • Eric: 

    Sure.  It is "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. "

  • Richard:

    There is a lot of reasoning in that.  But it must be extraordinarily difficult to have the discipline to believe in that. 

  • Eric: 

    That's true.  But you know sometimes in life there is choices are made for us.  I think you just have to choose to go on.  You have to choose to fight.  In fact the other night I was lying awake and I instead started writing lyrics to a song that I hope to finish with my partner Dan tomorrow.  About choices in fact.  Because it strikes me that with every moment there is a choice to be made.  And with every bit of the progression of my illness I go through a period of adjustment where I first have to decide that it's okay.  And once I choose to believe that wherever I am is okay I can move forward.  Otherwise I feel that maybe there is something that I do or say or think about.  But if I make the choice that it's okay it is because that is my choice alone.

  • Richard:

    But you lost control of most of your choices.  I mean ...

  • Eric: 

    I did. I did.  The only thing that I have control over is the choice of whether it's OK or not. 

  • Richard:

    How do you get there?

  • Eric: 

    I'm not sure.  I wish I had a ...

  • Richard:

    Talk about a journey and how with an illness like yours how do you get yourself to a point where you accept it?

  • Eric: 

    That's a good question.  I don't have a way to articulate it.  I think that it just counts to say that I think a part of human life is the fact that we do what we have to.  And I think that every part of my life, being a parent you're being a parent teaches us all lessons I think.  And we learn that we can do extraordinary things that we never would have thought we had the capability to do to protect our children or to get out of a situation.  I was going to say it is just what has to be done in order for me to survive.

  • Richard:

    Do you remember how you reacted to the diagnosis?

  • Eric: 

    Absolutely.  I think that it is kind of funny I thought about that just the other day because it felt like it's a cliché to say but some cliches come from the fact that their true.  I felt a little numb.  I went to get a coffee afterwards and then I called my wife and I interrupted her during her classroom teaching and that is something you only do once in a lifetime to an elementary teacher.  And she made a joke.  And I think that you know she said, “Oh now you can smoke as much as you want.”  Which is especially funny because I didn't even smoke.  But it was just kind of a it got me out of it right away.  And I think that laughter is one of the most potent sort of antidotes we have for any kind of illness. 

  • Richard: 

    Sure.  But were you scared?

  • Eric: 

    You know, I didn't know enough to be scared.  As much as I tried to learn about the disease the words on the page about being totally paralyzed and being unable to speak, being able, all these terrible things just I couldn't wrap my head around it.  I think it's every step of the way it has been really hard for me to imagine the next step.

  • Richard:

    Do you sort of disassociate from it?

  • Eric: 

    I do.  I do.  And that is something I actually have to fight as well because it is not a good thing to disassociate from it because it can often leave you unprepared for the next step.  And with a progressive disease as you know, being prepared for the next step is very important because I'm aware it could be very damaging.

  • Richard:

    Let me ask you directly, what is the prognosis?

  • Eric: 

    Prognosis is I guess an earlier death than I would have otherwise.  My breathing is already profoundly affected.  I have a respirator that is giving me 10 tons of pressure as we speak.  I have it in my mouth like a little hook that goes in and I suck on it when I take a breath and it augments the amount of air that I get.  Eventually I will be ... I could have any number of accidents.  And I have had several accidents where I found myself in a situation where I couldn't breathe and I couldn't get my breathing support working.

  • Richard:

    Tell me about those because you have a caregiver and some of your accidents have happened when she isn't there. 

  • Eric: 

    Right.  Well that's what happened actually was I let my caregiver go home because he had something to do.  And my kids and my wife were out and I somehow got myself in a position with the wheelchair where I was sitting very far forward and I couldn't catch a breath.  And I ended up passing out and sitting there for probably half an hour unconscious.  And when I came to I was surrounded by my kids, my wife and some EMTs all trying to revive me.  I guess it wasn't that hard to revive me so I was probably getting some air but it really felt like, I remember the  moment when I was getting ready to lose consciousness.  I really felt like just letting go and it was kind of peaceful, kind of regretful.  But I remember very well coming to and seeing relief on my loved ones faces.  And that is something I won't forget.

  • Richard:

    You must feel tremendous responsibility to them.

  • Eric: 

    I do. I think dying is easy.  Staying alive for your relationships is the more challenging choice.

  • Richard:

    How do you prepare your children for the future?

  • Eric: 

    We talk.  We talk a lot.  We let them know that they will be safe and cared for.  We talk about that it's sad.  That it is always going to happen to everybody at some point.  And we talk about, I like to joke with them about it.  We all joke a little bit, try to laugh at it.  But we I think you respect the inevitability but after you respect it you try to put it aside and just live life. 

  • Richard:

    Are you a religious person? 

  • Eric: 

    Actually I'm a recovering Baptist minister's son.

  • Richard:

    I take that as a no. 

  • Eric: 

    Well, it's a qualified no.  My support group here ... I have a group of men that put me to bed every night.  I have a wonderful caregiver that lives next door.  And a group of other caregivers they are very religious people.  And we debate, we talk, and we, you know, it is definitely something growing up in the house of a clergyman I have always been very fascinated by religion.  I think I would say pretty steeped in the Judeo-Christian tradition.  And I probably go all the way to the leap of faith and that is where I kind of I guess I just don't take the leap of faith.  My father used to like to say that I live my life on the horizontal plane and he lived his on the vertical.  Otherwise he thought we thought pretty similarly about things. 

  • Richard:

    Do you believe in an afterlife? 

  • Eric: 

    I'm not sure.  I just feel like retreating into metaphor when I think about that.  I feel like our afterlife involves our memories and the memories of those you leave behind and the affect that we have on the world.  As far as whether my soul will inhabit another being or be somewhere where I can frolic or anything probably not very sold on that.  I feel like it all happens here in all its beauty and all its tragedy.  It all comes to us as we live.

  • Richard:

    It seems to me that it doesn't serve much of a purpose to learn a lot about the illness because it is what it is.  But what have you learned about yourself?

  • Eric: 

    About myself, well I guess I've learned that I am more resilient than I would have thought possible.  I think that perspective on my life that I gave to you at the beginning that I have lived a very fulfilled life that I am a very lucky, lucky man.  That if something that I learned about myself.  I think that I didn't realize how lucky I was until I had the threat of it all being taken away from me.  Then I realized that it was just a great thing and that life was just miraculous and that mine was a good one. 

  • Richard:

    Are you ever angry?

  • Eric: 

    I am.  I think I mentioned before I have five 16 year olds.  I know I am side stepping your question but I get very angry about I mean I get angry about the regular things in life which is one of the very strange things about being sick.  Because I thought at first that I would be enjoying every moment and living on some kind of cloud.  But then of course you get your first hangnail and you go, “Oh, damn it.”  But I do get angry at the I don't know if angry is the word but I get very sad about things that I will never do again.  As I've gone through this sometimes the events that the last walk in the woods, the last time I'm reaching out and touching somebody.  I don't think that the last time I did it I was aware of it.  And I'm not sure, maybe that's a good thing.  But you realize different things that you will never see again, never experience again.  And you always realize that the other direction from hindsight.  So I guess the anger would come from wishing that I could again sometimes or I wish I could play guitar again.  But it passes pretty quickly.  Because I've got plenty to worry about.  I don't need to worry about what I can't do.  I need to worry about what I can do.

  • Richard:

    You know two words I always tried to avoid with the MS that I have is “Why me” because I think that that does make you into a victim.  Do you ever say that? 

  • Eric: 

    No, I don't.  I agree with you.  I think that we take maybe I don't know maybe there is a reason.  Look at all you have done to make people think about the whole issue of serious illness.  And the answer would be why you because you are better prepared to teach the world about it maybe.  I don't know.  That is one way to think about it though for sure. 

  • Richard: 

    I tell you, life is fragile. Isn't it?

  • Eric: 

    Yes, it is.  Yes, it is.

  • Richard:

    Has your view of what is important in life changed?

  • Eric: 

    Yes.  It has.  I mean I don't know I think that the one thing that really strikes me very clearly is that I can't see any reason at all ever why anyone would ever be unkind to somebody else.  That is something that strikes me the most.  It just seems so pointless. 

  • Richard:

    Did it take an illness to teach you that?

  • Eric: 

    It took an illness to underline it.

  • Richard:

    What would you say to a newly diagnosed person with ALS?

  • Eric: 

    Well, I think I might quote Warren Zevon when he was diagnosed with terminal cancer who said, “Enjoy every sandwich.”  I think I would just counsel them that I mean I actually do talk to a lot of newly diagnosed people and I like to point out to them that there is a lot of living they can do in spite of the illness.  I have to point out with ALS it is such a difficult disease to predict that sometimes the disease proves to be wrong.  Sometimes the people go really quickly.  And I have been very lucky.  It is coming up to six years since I have been diagnosed. 

  • Richard:

    You have outlived your life expectancy haven't you? 

  • Eric: 

    Absolutely have, yes.

  • Richard:

    By how much? 

  • Eric: 

    Well it depends on how you look at it.  They said when I was diagnosed they said two to five years.  And of course when you are being diagnosed you think oh my gosh that means two years.  But I guess realistically by a year. I probably had symptoms of the disease a couple of years before that.  So I've outlived it.  There are examples with Stephen Hawking in particular where people live many, many years with it.  And then there is the example of people who make it only for a matter of months.  And I don't know what the difference is but it just seems to be the way the disease goes. 

  • Richard:

    Do you feel like you are prepared for whatever happens?  I actually it is a lot easier to ask that question than to answer it. 

  • Eric: 

    Yes.  I imagine it is.  I feel like I'm certainly better prepared than I was.  I think when I had that experience on that Sunday afternoon we around the house we call it “the day I died”.  I think I wasn't as prepared then as I am now.  But I think that it is something you really can't prepare for. 

  • Richard:

    Eric, you wrote a song called Learning to Fall.   And it almost sounds like you were doing exactly that, preparing.  Tell us about the song.

  • Eric: 

    Well the song was my sister gave me a book called Learning To Fall: A Memoir of an Imperfect Life by a guy named Philip Simmons who was a professor on the East Coast.  He passed away from ALS a number of years ago.  I have never and I'm still not drawn to read the books about the experience of having ALS.  Because it is a little too close to me and it just really doesn't appeal to me.  So I didn't read the book.  But being a songwriter I know a good title when I hear one.  So I was inspired by it to write the song.  I wrote it with a dear friend of mine named Preston Sturgess.  We I had to explain to him during the writing of the song several times about the fact that there was you know, that we weren't writing about a tragedy here.  He really wanted to take the song in a direction where there was sad music and he had lyrics that talked about trials and all that kind of stuff.  And I wanted it to be a celebration.  And I think that's what we ended up with. 

  • Richard:

    Well, it's a powerful song.  And first Eric, I want to thank you for talking today.  It is always an inspiration to talk to you and I value it.  And with your permission I would like to end this on the song, Learning to Fall. 

  • Eric: 

    I'd love it.  Thank you very much, Richard.  Always good to talk to you. 

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