I’VE met some brave and inspirational people in my life. Angie Cunningham is one of them.
I met Angie, “the girl from Tassie”, when she was living in London in 2005. She’s been a wonderful friend ever since.
Ange is one of very few female friends I have with whom I can share anything. She is married to Pat, one of my best mates. They are superb parents. As good as I have witnessed. Their two children are magnificent products of their loving marriage.
Three and a half years ago, when my eldest daughter was about two months old, Pat and Ange came to our house to drop off a present. I said they should stay for dinner. They said they were off to the doctor to get some more tests done because Ange had started to slur a little. Two days later, Pat called to tell me Ange had been diagnosed with MND.
Ange is now in a wheelchair. She can’t move anything but her eyes.
Her only communication is through typing on an iPad, using her eyes. She can hit “speak”, which verbalises what she has written. She can choose any accent she wants. She often uses a stuck-up English lady called “Heather”.
In late November, I asked Ange if she wanted to write a column together. I would email her a question and she would email back. She said she didn’t think her story was interesting enough. I told her I knew it was. She thought it would be a good project for her, and it would raise awareness around the dreadfulness of MND.
In January, after a month of emails going back and forth, I asked Ange if she had the energy to do any more. In her dry way, she responded with: “I will do as many questions as you think we need. You are the director of this, Hame, I am just the lowly screenwriter, the Award at the Oscars everyone fast-forwards through! I only write the answers when I have the energy to, so it’s not pushing me … bring it on!”
The conversation that follows started in late November, and finished last week. Days and sometimes weeks would go by without response. It is a conversation I will always treasure.
Hamish: Childhood, tennis, career, family. Was there a moment in your life that you can pinpoint that changed your journey critically, where it took you from Tassie to see the world?
Angie: I think so. Mine was the U12 Tennis Nationals. I had a really good tournament, and I was noticed for the first time really. If I hadn’t stood out then, there would have been no Institute of Sport, no grand slams, no world travel, and no career in tennis. So my early success at the Nationals meant I was picked up and I was taken on the crazy ride of the junior tennis world.
HM: A child prodigy. What was your highest world ranking?
AC: Hardly! It’s actually quite underwhelming when you realise how much federal funding was invested in me! I ended Juniors as No. 2 in the world in doubles, but turning professional was a whole different story. It was tough and lonely, and I really struggled. It was six or seven months overseas each year of week-to-week travel, chasing points for my ranking and fighting injuries. After five years of barely breaking even, I enrolled in uni and got on to a path that was more financially viable!
HM: I need to bring your husband into this banter early. When did you first lay eyes on Pat?
AC: Pretty early on. We share a very close childhood friend, Rob Tucker, so we met in our teens through him.
HM: Your first thoughts?
AC: Well, we weren’t childhood sweethearts, so I guess no major sparks flew when we were 15! We started going out together seriously when we were 25. I knew he was the one for me, much earlier than Pat knew I was for him. He gave the marriage and commitment thing a lot of thought, for which I am very grateful. He is incredible with me now in this battle, and he is completely dedicated to my wellbeing.
HM: I know he is. More on that later. He is a very good sportsman. What was the score the first time you played tennis against him?
AC: Hmmm. His main sport is golf, which he is very good at, and it wasn’t my suggestion for us to play a match on practically our first date. But it wasn’t pretty, and I was hoping he would call it quits after the first set. I was trying to let him have a game without tanking, but it didn’t happen.
HM: 6-0 6-0. That’s brutal! When did he first take a game off you?
AC: It became a game within a game after that first match. It wasn’t until about eight years later, and it was very strategically planned by Pat. I was seven months pregnant with Maggie (our first child), and we played on grass. I couldn’t bend to the low balls, so he just played drop shots and lobs and won a few games! I still beat him though!
HM: Tintin (Pat looks like Tintin) showed me a trophy in your home — runner-up in the girls’ doubles at Wimbledon. Did you play on Centre Court?
AC: That trophy is a carriage clock, and it’s been in our bedroom for years, but Pat only just realised it was from Wimbledon. It’s the only trophy I have left. The rest mum donated to the local tennis association about 15 years ago, which I didn’t mind, but I thought she could have asked first! We didn’t play on Centre Court for the final. The finals were delayed due to rain, so there we all were: us, the men’s singles finalists, mixed doubles and boys’ junior singles finalists, all in the lounge together, just waiting. We all went out to play at the same time, and we got last dibs, and played on court 4.
HM: Did you get to meet any of the Royal Family for the presentation?
AC: That is the usual procedure for presentations, but it was so late in the day they’d all gone home!
HM: Annoying. Just looking at some photos, are there any haircuts through your career you regret?
AC: Ummmmm … well … my mother still maintains they were fashionable!
HM: After your tennis career and uni, you worked for the Women’s Tennis Association and became besties with Venus and Serena and co.
AC: Well that’s overstating those relationships a little! I ended up overseeing Player Relations and Operations for the (WTA) Tour, so I was in the players’ faces a lot, and sometimes very much their venting point. I think that happens in sports: once you have been in the circle, you are always a part of it. I’ve seen that recently in the AFL too, with the AFL family supporting Neale and The Big Freeze. The tennis world has been so supportive of me. It’s a very special thing to be a part of a fraternity like that.
HM: Were you a little chuffed when Serena alluded to you and your battle in her Australian Open acceptance speech last year when the world was watching on?
AC: I was, it was an unbelievable surprise. We were watching at home, obviously supporting her as Serena had already given so much time and support to our Foundation. We were floored when she reached out at such a pinnacle moment.
HM: Serena knows how important it is to support the fight against MND, something you diagnosed with more than three years ago. When did you first get a sense something was wrong?
AC: Sophie (youngest child) was about 18 months old and I was still feeling really run down, and I couldn’t associate it with simply having a newborn child anymore. I remember waking up one night with a sense of doom that I had a life-threatening illness, but I thought at the time, never mind, don’t stress, if it is, I will fight it and win.
HM: What were you feeling at the time — what symptoms scared you?
AC: It was mainly tiredness at that very early stage. I didn’t even tell Pat that I was worried.
HM: Were the symptoms significant enough to prompt an immediate visit to the doctor, or was it just an inkling that something needed addressing, and you went without urgency?
AC: It was just an inkling. I saw a doctor at the time and I was diagnosed with a thyroid issue, so I started medication for that. Several months later, I was still struggling with fatigue and I started having trouble with my speech. At that stage it was only really noticeable to me though, so for my GP who hardly knew me, it was all presenting differently.
HM: In what way?
AC: She looked at me and saw a woman who had quit her career, had moved home with two young kids and was struggling with fatigue and a few vague symptoms, and she just thought I was suffering from anxiety. I knew it wasn’t though, as I’d made all these lifestyle choices so happily, and I was in a great place mentally, so I felt at a loss to explain what was happening to me physically. A close friend is a GP, and talking it through with her, she knew something was wrong, so she suggested more testing and sent me to an ENT (ear, nose and throat) specialist who then referred me to a neurologist.
HM: What were you expecting when you went to the neurologist with Pat for the first time?
AC: I told Pat he didn’t need to come to that appointment, but I am so glad he did. I am not really sure what we were expecting. We knew it was pretty significant at that stage, but we certainly weren’t prepared for any life-ending diseases. The neurologist we saw is a family friend, and he was amazing, gently guiding us through it all. He ruled out several things, and said he would have to run more tests, but he did say he was very concerned with what it could be. We left his office stunned, got in the car, and broke down together. We knew it was bad.
HM: So the discussions between yourself and Pat turned to what it could be?
AC: Sadly. The next week I started a series of tests, where we were testing for other diseases, hoping to rule out MND, which has no test.
HM: There is no simple test for MND?
AC: Nothing. It becomes a horrible series of tests, and every time you are praying that they find something, anything, as at least you are then diagnosed with something less severe. I had done a bit of research myself, and I’d narrowed my symptoms down to an auto-immune disease or MND. When auto-immune was ruled out, I knew I had MND.
HM: So once almost everything horrific is ruled out, you are left with the most horrific of all?
AC: Cruel, but yes, that’s how it works.
HM: How many days from initial consultation to diagnosis?
AC: It can sometimes take up to a year to run through all the tests, but my tests were conducted in under two months. They say early diagnosis is a good thing, but with no treatment and no cure, I found not knowing far better than knowing I had MND!
HM: How does a doctor tell you have MND?
AC: With difficulty. It is an unfolding diagnosis as you go through the testing.
I think it is cruel for anyone to be told they are sick and there is nothing they can do to fight it. You are faced with absolute hopelessness in that moment.
But I think our friend did it as gently as you possibly can, in what is an incredibly delicate situation. He confirmed what we knew by that stage, and then guided us to the specialists in MND for my future care. I have such admiration for my neurologist Dr Susan Mathers. Her commitment to such a hopeless disease is so admirable, and she handles such delicate conversations regarding my care with such grace and sensitivity … she is incredible.
HM: Sounds like we need more people in the world like Susan. How would you describe what is happening to your body?
AC: It sometimes feels surreal. I dream when I sleep, and I never have my illness in my dreams. I can walk and talk and hug and hold, so when I wake up and my body won’t move, and I can’t talk, I wonder how on earth did this happen! It is a crappy disease, just helplessly watching your body shut down slowly while your mind remains unaffected.
HM: The horrible moment when you wake up from a terrible dream, before you realise it was just a nightmare and get such relief … you are living it in stomach-churning reverse. Neale Daniher calls MND “The Beast”. What do you call it?
AC: Neale is very polite. I call it “The F@#cker!” I guess it’s lucky I am not the patron of the foundation, isn’t it!
HM: A patron with MND and a potty mouth … it’d be a powerful combo! Physically you are slowly being beaten by The F@#cker. How are you emotionally?
AC: I am pretty good. I made a decision in the first few days after diagnosis to focus on the things that I have, not what I have lost. It worked brilliantly for the first few years. Now, though, I am at the pointy end of the disease, and some days can be quite tough, with pain and breathing difficulties, so it’s harder to be positive all the time. You know my husband and kids though, Hame — it is hard not to have fun with them around, so while I might not have a lot left in my body, I still have a lot with them around.
HM: Mentally, nothing gets affected with MND? You appear as sharp as ever … just trapped in a body that won’t assist you?
AC: I would say, possibly, sharper than ever. I read a lot on my tablet, and I spend most of my time listening (which during my illness I have realised people don’t tend to do enough!). It is amazing how much time is wasted from people not listening properly. My voice was the first thing to go, but that was very manageable with a pen, paper and technology. When we told the kids I was going to lose my voice, Sophie’s first reaction was, “Yay! You won’t be able to yell at us any more!” A serious indictment on my parenting! My left hand went next, and the feeling of that was really strange. One day, it just started to get weak. I could actually feel the breakdown between my brain and the muscles, and trying to make it work physically exhausted me. The toughest change was when my legs started going, and I ended up wheelchair bound.
HM: What is the greatest stigma or learning from becoming disabled physically?
AC: Because I can’t talk and my face muscles have deteriorated, I am stuck with an annoyingly silly look on my face, which constantly gets misinterpreted! Often I get mistaken for being mentally disabled. People often think I am deaf as well, so I get a lot of close talking at LOUD VOLUMES!
HM: That sounds VERY ANNOYING!!!!
AC: VERY ANNOYING! It has made me realise how many different reasons and ways a person might be disabled, and reiterates that you definitely can’t judge a book by its cover. Ever.
HM: The only thing you can move now is your eyes. To set the baseline for our readers, how long will it take you to type this answer?
AC: It is not as fast as my touch typing was, but I can do about twelve words a minute. So my average answer takes about ten minutes to type with my eyes. This machine is a godsend though; it keeps me connected to everyone and gives me my voice back. I tend to be too slow for group conversations, but if I really want to get my opinion across, I usually awkwardly insert it into the next topic of discussion that everyone has moved onto, and I just confuse everyone! This answer has taken about eight minutes.
HM: You have written an inspiring book for your two magnificent girls — Maggie and Sophie. It is 150 pages of photos and copy and lessons and advice. When did you decide to write the book — before or after you had lost the use of your voice?
AC: By the time I was diagnosed and we knew there was no recovery, my voice was pretty much gone. I did not have the option of recording messages, so I decided to do a book. The concept of the book evolved based on lots of advice, and my thought process while writing it. A dear friend very patiently helped me format and edit it.
HM: What is in it?
AC: It is just my story, in my words: my successes, and my failures, and the lessons I’ve learnt from them, especially the failures. I’ve also included my thoughts on important times in their lives where not having their mum around will be tough.
HM: What is the one message you hope the girls will take from the book?
AC: It might be wishful thinking, but I am hoping they get lots of messages from it. I am hoping they always feel they have the essence of me, bottled into that book. It will serve as a reminder of the times we’ve shared, and will also be there for them when they want to be connected with my way of thinking.
HM: The last pages are very special.
AC: That last part of book, and a lot of other things I have been preparing for the girls, has been based on advice from a wonderful friend of mine who lost her mother at just nine (the same age as Maggie now). As a parent, you do everything you can to make sure your kids are happy and protected. We have been told that the toughest thing for a child to go through is losing their mother. WHAM! And now I am dealing that crappy hand to my kids, and I can’t
do anything to stop it from happening! But I can make damn sure that I give them everything I possibly can to soften the blow. My friend gave me great insight into moments and days when girls tend to miss their mums more acutely, and so I have tried to imagine those times with them, and I’ve written down what I would say to them if I were with them. That is all in the book.
HM: Significant and magical words and messages, and beautiful photos … it covers your early days as a toddler, to now, in the wheelchair.
AC: Pat is a very good amateur photographer, so I am very lucky to have lots of photos with the girls, which my friend told me are very precious to her. I also thought it was important for the girls to have a realistic version of me, no glorifying of the dead! I want them to know that I made some doozy mistakes — we all do — but what is more important is how you deal with them, and how you move on. I am pretty happy with the result, and it gives me some comfort that they will always have my thoughts with them on their journey through life.
HM: You’ve included some “practical lessons” — bra selection and other girlie stuff. It’s quite a manual.
AC: Interesting, Hame, that you reference the bra selection?! That’s a small part of the “growing up” section in the book. The areas that were especially important for me to touch on were the “getting married” and “having babies” parts. Having my mum around for those times was crucial for me, and it breaks my heart I won’t be there for them.
HM: They will have the book, and the names and numbers of people they can call for specific things. You have left them something they will treasure.
AC: I could never cover everything, but I have tried my best. I only put names in for some very specific things. The wonderful thing for me is that the girls are surrounded by gorgeous women — their two grandmothers, five aunties, four older girl cousins and their caring godmothers, so they will have plenty of female support.
HM: It is a gift for Pat, too.
AC: Yes. I gave the book to Pat, as it is a lot about my philosophies on parenting, and he also often checks in with me on stories that he has forgotten about in our lives together, so I’ve tried to preserve the details in the book. Pat grew up with three sisters, so he is great around girls and with our daughters, but I just thought some of the tricky girls stuff would be better handled by one of the cousins. I just wanted the girls to know they had options, and people to speak to. I couldn’t write about a stepmother filling the roles given Pat took seven years to propose to me, so a lot of those growing up milestones may pass before another female joins the family! That thought has been a big part of accepting I am dying, but I really do hope Pat finds someone to love again. I know he vets really well, so I am confident that whatever he decides, it will have a positive influence on the girls.
HM: He has chosen perfectly to date! You said you’ve gained a rather intense appreciation for life now you are on borrowed time. Did you think you had a good appreciation before and then realised, like most of us, you took too much for granted?
AC: The thing with MND is today is my best day, tomorrow is going to be “less”. Pretty much every day with this disease, I have got weaker. Before I got sick, I was always chasing or wishing for something — promotion, pregnancy, new home — and I used to think, just enjoy the moment you are in. Now I have to appreciate the moment that I am in, as this moment is as good as it gets! If there is anything good about being given a death sentence, it is the fact you witness all the people you love rally around you. I have constantly been floored by all the love and goodwill surrounding me. I also wonder whether it is life’s irony to cast this disease on me. I have been impossibly independent since I was a small child, and then this disease took it away from me. I rely on help with just about everything. The one thing I definitely took for granted is my health — not that I did not look after myself, but I never valued being healthy as an asset, and now I think it’s the most important thing. As the saying goes, “At least you have your health”.
HM: A good lesson for us all.
AC: My dad once told me a saying that I like to adopt. It goes like something like this: the only two times you should offer advice is when someone asks you for it, or when someone’s life depends on it. So I am not trying to force my motto for life or experiences on anyone. I am a big believer that experience gives you your perspective. I once chastised my best friend for not getting amorous with her husband after her baby was born. Twelve months later, I had Maggie, and I felt like such an ignorant, horrible friend! I also had no understanding of disabilities and the social stigma disabled people have to deal with, until I experienced it myself. I have a rather intense appreciation for life given I am now on borrowed time, but I don’t expect others to feel the same way. It is the situation I am in, but my friends might have other concerns which are dictating their perspective.
HM: Maggie and Sophie are only young: nine and six. They are beautiful kids. How have they coped through your battle?
AC: I am so proud of our gorgeous girls. It is hard to know exactly what is going on in their minds, but they are generally very happy. Of course they have sad times reflecting on my illness too, and I am very conscious of the fact that Pat is going to have tough times with them when I am gone, and that it is hard on all of them. Since my diagnosis, we have really focused on family time, so the positive byproduct has been that time together during these really formative years; they’ve had both of us around pretty constantly. That is so rare these days, and I think it has been great for the kids. As my disabilities have grown, I have obviously had to relinquish my roles as a mother. The no talking thing was not a problem as I could always communicate. So the first year was OK, I just could not do classroom help. When my hands started going in the second year, I didn’t feel comfortable driving, but I could still cook dinners and do most things at home. Watching Pat slowly take over these roles was reassuring for me, to see that he could cope and do a good job, but also very hard for me to see my daughters coming to me less and less. When I became wheelchair bound, Pat had to take on pretty much everything. I think if there is a positive to my body slowly shutting down, it has allowed all of us to adapt with it, rather than a sudden drastic change.
HM: Pat has shown a strength of character you pray your husband would possess.
AC: We absolutely never expected to be in this situation. Who would? Pat has been remarkable. One time when things got really messy (I won’t describe it in detail, but it was not a place I wanted to be), Pat said “I really should have thought more through that vow ‘in sickness and health’.” We collapsed into fits of giggles, and that is what I love about him (one of many, many things). He lightens everything, and it is how we have coped through this battle. I am still able to live at home thanks to my husband’s commitment and strength. I have had two stints in ICU, and Pat has not left my side, I can’t tell you how much that means to me. He is pretty much there for me 24/7, and it is so tough on him, but he does it for me anyway.
HM: When you weigh up the cards you have been dealt, and try to make sense of it all, where do you end up?
AC: Life is not always fair. I know I was on a pretty good run for 39 years. I had a blessed childhood, exciting sporting adventures growing up, challenging career travelling the world, married my true companion, had two beautiful children and then the incredible lucky streak ended (rather abruptly!). I am not the first 40-something mother who has had her life cut short; sadly, it happens too much. I just accept that it is part of my fate, and I am thankful for every other great hand I was dealt.
HM: Given what you have learnt, is there anything you can offer to someone who has, or will be diagnosed with MND?
AC: My heart honestly shatters every time I hear of someone being diagnosed with this horrific disease. I know the dreadful pain they will go through in processing the diagnosis. Sadly, all I can say to those now is just: stay strong and I hope you have good support around you. I had to step back from fundraising when my body got too weak, but Pat took on more then, and he is as committed as ever to the Cure for MND Foundation. The foundation will continue until there is a cure, and I believe they will see this happen, so future MND sufferers won’t have to go through the same despair and hopelessness.
HM: How do we beat this bastardly beast? More research? More funding?
AC: While I understand the economics, I despair at the lack of government funding given to research this disease. Luckily with the amazing support of the public, our Cure for MND Foundation (formed with Neale Daniher and Ian Davis) has invested over $2.75m into MND research initiatives over recent months. I truly believe if the foundation can keep the momentum and funds going, there will be a breakthrough in the next ten years. The thought that a patient will one day hear “MND” and “hope” in the same diagnosis makes me very happy.
HM: Let’s pray. You only have the use of your eyes now: what do you see each day that makes you happiest?
AC: What everyone would expect, I think. Seeing my children learn, grow and develop themselves. Maggie is at age now where you can really see her adult personality coming through. She cracked a joke the other day, and it was almost like Pat was saying it. I treasure moments like that. When I was diagnosed, Sophie was only two years old, and I never expected to see her start school. I ended up driving her there on my wheelchair, which was a fun experience for all of us, and one we didn’t expect to have. Although I am very limited, I treasure moments with my family so much, and I am thankful to still be having them.
HM: You have lived a remarkable life. Superb parents. Magnificent husband. Sublime kids. Achieved and given so much. How would you now define the purpose of life?
AC: Phewww! That is a deep question that might be intellectually beyond me. First of all, you missed incredible friends and family in the list. My proudest achievement is having so many wonderful people around me. Life is incredibly short, and I’ve established we are not here for long. I don’t have any major regrets (a minor one was my hairstyle in my early teens, which you have found so amusing, Hame!). I think I squeezed as much good stuff
in as possible, and no one knows yet why people get MND, so there was nothing I could do to stop it. I have had great happiness in my life, and that is all you can wish for —
a happy and fulfilling life, surrounded by people you love.
HM: And people that love you. Are you scared or at peace with what lies ahead?
AC: I wouldn’t say I am at peace with it, but I acknowledge my inevitable fate. I have had two stays in intensive care so far, and it has been close calls both of those times. I still have fight left in me though for now. I don’t spend a lot of time thinking about the end. You get a lot of professional advice on how to handle your affairs, and what to do with the kids. We have dealt with those things, and then we just got on with living life. I don’t feel ready to die, and I am certainly not at peace with the fact that I am. Some days now are really tough to get through, though. I had a few in a row last week where I was really struggling, and I think it will get to a stage where the struggle is too much to bear every day, and I will just want to go.
HM: Final one from me: I have admired you since the day I met you, and have loved you from about a month after that. It has been a privilege to have this chat, and when the time comes, I will miss you very much.
AC: Finally you have broken me … you’ve brought tears to my eyes. I have loved doing this article with you, my dear friend. I am sad it has to end as you have asked some very thought-provoking questions, and have made me explore and express things I should be saying more. Being your friend is a privilege. xx
NOTE: In a sad, cruel twist to an already painful story, Angie and Pat found last week that their great friend, their “rock” — mum Cath Baker, who has cared for Angie and been by the family’s side through all the ups and downs — has also been diagnosed with MND.
Angie said: “Watching her beautiful family stoically wade their way through the news has been heartbreaking, and at the same time heartwarming, because they are doing it together and with so much courage. It’s another example of how MND can strike anyone, any time, even two middle-aged friends in the suburbs in Melbourne.”
WHAT IS MND?
Motor neurone disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow generate and die. There is no known cause and there is no cure. On average, every 12 hours in Australia someone is diagnosed with MND and every 12 hours someone dies of MND. The average life expectancy after diagnosis is just 27 months. The Cure for MND Foundation delivers hope to sufferers and their families.