Working carer, sociologist, academic, life coach, columnist, bestselling author, and Oprah’s friend, Martha Beck, was interviewed recently by Carers New Zealand

Martha said that many of her achievements have resulted from her experiences of being a mother to Adam, who has Down Syndrome, and who is now 20.  In her interview she gives advice to other carers about how to deal with stress, depression and achieving big things, one small step at a time.

“After Adam was born he couldn’t breathe very well…  I think I put this in the book (Expecting Adam). His nasal passages were frequently blocked, as is the case with many infants with Down Syndrome.  He didn’t really breathe through his mouth, so his nose would start to get plugged up and he’d start to gasp for air, literally, and I’d know it was time for me to suction out his nose; this was every 15 minutes.
 
I had another toddler, and I was trying to work, I was going to school, and I was suctioning out Adam’s breathing tubes every 15 minutes.  So that meant literally no sleep.

I didn’t know it then but you actually can die of sleep deprivation, after about two weeks. I was very close to the edge.  I mean, physically, my body was just ringing all these alarm bells.  And I remember this moment when I thought – I will not survive if I keep doing this and I have got to make a decision.
 
So I took Adam in his tiny little cradle that I would carry him in, and I put him in the hall right outside the door of my bedroom and said to Adam, ‘I’m going to sleep for an hour, and if you die, you die.  I’ve got another child to take care of, and I have to think of her, and I have to think of my own life, and if I don’t sleep I’ll die and then I won’t be able to suction out your nose or do anything else for you’.

And oh, I had to be at such a place to make that decision!  And I went into the bedroom, and I closed the door, and I went to sleep for two hours.  And when I woke up, Adam had learned how to breathe through his mouth.

For me, psychologically, this was a huge transition – where I realised you’ve got to put your oxygen mask on first on the plane, there’s a reason why you do that first, because if a child has no parent, the child is not in a good way.  And if a child’s parent is not functioning, that child is in trouble.
 
So when push comes to shove, saving your children means you have to save yourself.  And that was huge for me - and I remember looking at him and saying to him and … it felt so cold and wrong at the time but now I think it’s absolutely necessary.  I said to him ‘you know what, you have Down Syndrome and I don’t.  You’re the one that has to learn to deal with these problems with your nose, ultimately, not me’.

And I have since come to see that.  You know, I used to read things on detachment in Buddhism … and I’d think well, detachment is indifference, it’s not caring, it’s terrible.  But now I think of it as knowing clearly where the child is … and I’ve realised it’s set both of us free to know we are not the same person.

It was not an easy pregnancy but, in a way, I followed what was easiest for me in my heart.  I’m not a political ‘you’ve got to keep the baby no matter what’ person; far from it.  I really, really believe that each person should be able to make their own choices in these situations, but it was so interesting to experience how much bias there was at Harvard against somebody with an intellectual disability.  

Here’s a story that’s not in the book...  I had an adviser I didn’t write much about in the book because I think he was very well-intentioned … but he called me into his office a few days after Adam was born and said okay, I understand you may have religious objections to abortions – which is not true – but now you’ve got to institutionalise the baby because otherwise it will destroy your career.  And I just looked at him and thought ‘oh, you don’t get it either’.

Well, a few years later that same gentleman was walking on an ordinary day, tripped, fell, hit his head and sustained a brain injury that made him completely and totally unable to function.  So he had spent the rest of his life tied, literally strapped up to a wheelchair so that it would hold his spine erect.  He can understand everything but he can’t speak and he can’t move.  

I didn’t even know this had happened until after Adam was born and I had moved away.  And I went to a party where this man was wheeled in by a friend and everybody applauded for him, and this was my former adviser, and I watched the tears roll down his face as everyone accepted him despite the fact that he could do ‘nothing’, and I thought ‘Oh my god, I thought I learned the hard way’.

And what was really sweet, was to see that people were getting it.  That we’re all one bad fall away from being profoundly disabled ourselves. That, even if an accident doesn’t get us, old age will.  Something is going to get us.

So it was such an opportunity for me to realise WHAT LIFE IS.  Because I was making a choice of not ‘do I want the baby?’ but ‘what kind of baby do I want?’   And that really begs the question: what kind of a human life is worth living?

I believe the answer is a life that is capable of experiencing joy.  That joy is its own excuse for being.  And there really is no other reason I want to be alive.

Adam is now 20 years old – he’s in a transitional program between school and various career options.  He still does academic things – he’s learning to read better and deal with money better - they have sample jobs where they take them around.  He loves dealing with elderly people, he loves being a carer.  

That’s interesting because what we are given, we want to give back.  What a lot of carers don’t realise is that even if your child is very disabled, as you care for them you fill up the well that makes them want to give back and they love feeling useful – everybody loves feeling useful – being able to give back, so allow your child, or whoever you’re supporting – to give to YOU.  

That’s so counter-intuitive for many carers and yet I’ve heard this from all the parents of children with Down Syndrome, that when the parent became elderly, that’s when they realised who their child really was, because the children cared for them, not as children, but as adults who may have disabilities, but were able and willing to do things for those they loved.  That’s a gift to both people; allowing it to go both ways is something that I don’t think we carers really do – and yet it is so good for your child and for you.

I’ve become more and more ‘Zen’ as I’ve gotten older, in that absolute freedom from worry about the future.  One of the things I’ve done as a social scientist is that I’ve really reviewed the research on brain development, and what they call ‘normal’ psychology coming out lately.  It’s amazing, revolutionary stuff because we’re learning things about the brain that we never knew.  One of the things that is really clear is that people who have very verbal minds worry a lot more about the past and the future than someone who is not very verbal.  

An animal that doesn’t have a verbal construct really can’t get lost in stories about the past, or stories about the future, and humans are lost in those stories all the time!  Most of our suffering comes from what we are saying in our heads: ‘Oh my God, this is going to be terrible – what will the future bring?  Oh my word!’  Without that verbal component there’s not much suffering and a lot more presence.  Adam is not particularly verbal.  His IQ is pretty high for a kid with Down Syndrome, but his verbal acuity is very, very low, and I have come to see that as a huge stroke of luck for him. He lives in the ‘now’.

I’ve learned that Adam is my Zen master because he is not filled with stories about past and future and that is a huge gift.  So you never know how the thing you think is negative will turn out to be a positive … just accept that it can.

A really good way [to deal with agonising about the past, and feelings of anger and bitterness] is to allow yourself to be as bitter and upset as you possibly can get.  Be upset at the people who haven’t done things for you, or who have done things wrong and write down all your most detrimental thoughts about how people should be treating you – about how things should be different for you – you know, ‘I should have more free time, people should pay more attention to my needs’ … whatever you come up with … and then, instead of seeing it as other people imposing on you things that you don’t want, change those other peoples’ names to your own – so instead of ‘people should give me more chance to rest’  it turns out to be ‘I should give myself more time to rest’.  ‘My child should let me have more time alone’ becomes ‘I should let me have more time alone’.  So anything that’s angry or judgmental is wonderful fuel, because it’s telling you what you need to be giving yourself.

What I tell people is that nobody got to the top of Everest by jumping.  I may take little, tiny, teeny steps to get up to the highest mountain on earth … and it’s difficult when you’re not getting enough oxygen, so climbers take teeny, teeny, teeny, steps … it takes them hours to go a hundred yards.  And the more dramatic the mountain is to climb, the smaller your steps have to be … so the bigger the task, the smaller the steps.

Raising a kid with an illness or disability, or supporting an adult with a significant level of disability is a big, big job so… the steps have to be tiny, tiny.  That goes for learning to care for yourself, too.  So turn 15 minutes of self care into 20 minutes of self care, and then turn that into half an hour. Find ways to put the baby in the hall and say, ‘I’m going to take my nap now’, or whatever else you need, 'I’m going to spend time with a friend', 'I’m going to get a massage', 'I’m going to ask my husband to rub my feet’ – whatever it is to help you care for yourself.  

If you keep adding to it, little step by little step, you’ll be amazed how much more you can do.  There’s one study that estimates people get two extra hours of productivity if they just lie down for 10 minutes during the day.

... The role of men has been so narrowly defined in developed cultures that most men who I have worked with (and the majority of my personal clients have been men) - feel more trapped than women.  As a woman you can have a job, go to work, then you can quit and have a baby, and you can work part time or you can do a lot of different variations, but for men to not have a job, or to put a lot of time into work that is not career related, is to lose identity.

You know what I experienced at Harvard was a lot less judgmental than what would have happened to me if I had been a man.  Because men are under even more pressure to produce, to look a certain way, to have a certain level of success in the world, when they are torn away from it they feel this incredible anxiety – like, I’ve got to get back.  So I have men in my office who are outwardly fit, and literally they are the ones that cry – they are the ones who have no idea what to do next. It’s heartbreaking.

If you are under extraordinary pressure, use extraordinary means.  If I have a client who is in depression and it’s going to take them months of therapy and readjustment, I say ‘Go to your doctor and say I’m never, never, ever happy’.  Because nobody should feel that way.  I didn’t realise that myself for many years.  I came to this partly when I had Adam, but then later, during surgery I had one of those experiences people talk about when you see a light – you know.

After I had that experience during surgery, I came back to consciousness realising something that seems so obvious now – I should be happy.  You know, if I’m not happy, I should figure out how to be happy.  And just that basic thing – if I just sit a client down and say, ‘How are you feeling?’ and if they don’t know, then I start them with physical sensations and pretty soon emotion comes up and I say ‘Are you happy?’ and if they are never happy I say ‘Make sure you are happy first’ and then we’ll work on changing your circumstances, because it’s easier to change when you’re happy.

So I tell them to see a doctor for an evaluation, and if they are depressed, they deserve to have whatever they need to heal – just like if they had an ear infection, I would say you need to be on an antibiotic.

So if you are in extreme circumstances and it is not possible for you to be happy and you are caring for somebody who needs extraordinary levels of care, use modern technology – use whatever feels right for you.  Don’t feel ashamed about using antidepressants if that works best.  You are dealing with an extraordinary circumstance – you need extraordinary care yourself.

I was in a support group – and I cannot over-emphasise the importance of that – it was just a group of very, very different women – eight women – all of us with our own particular challenges and different types of disabilities among our relatives – and I went there every Tuesday for two hours.  

The group was run by therapists, but it was really just a support group.  I don’t know how I could have survived without that.  So there are two things you need – company and information.  Getting company is crucial.  Even if it is just a buddy when you go online and say, ‘hello, I have a child with a disability, or a relative with this problem – who else is out there?’  And just connect, connect, connect.

Psychologists say that the unit of physical survival for a human being is one person, but the unit of emotional survival or psychological survival is two people.  You cannot be emotionally healthy in total isolation.  So if you are isolated, get anything you can.  Coaches are wonderful if you can afford them.  Life coaching is for me more like personal training.  A therapist is like a doctor who gets you to be healthy and a life coach is like a trainer who takes you when you are healthy and gets you to achieve high performance.  So if you can afford any of those, go for it ... you give more care, so you deserve more care.

There may be many other things you can do, but you must learn to be kind to yourself.  Without that, nobody gets taken care of.”
 
About Martha Beck:

Martha Beck is a writer and life coach who specialises in helping people design satisfying and meaningful life experiences. She holds a Bachelor’s degree in East Asian Studies and Masters and Ph.D. degrees in sociology, all from Harvard University. 

Before becoming a life coach, Martha taught sociology, social psychology, organisational behaviour, and business management at Harvard and the American Graduate School of International Management. She has published academic books and articles on a variety of social science and business topics. 

Her non-academic books include the New York Times bestsellers Expecting Adam and Leaving the Saints, as well as Finding Your Own North Star: Claiming the Life You Were Meant to Live and her newest book, Steering by Starlight. She has also been a contributing editor for many popular magazines, including Real Simple and Redbook, and is currently a columnist for O, the Oprah Magazine. 

More information can be found on her website, www.marthabeck.com including her articles, books, speaking appearances, and life coaching strategies and suggestions. 

Martha lives in Phoenix, Arizona, with her family.