Katy Styles: Courtesy of Katy Styles
Becoming a full time caregiver to her husband Mark, after he was diagnosed with Kennedy’s Disease, a degenerative and progressive disease of the motor neurons, has changed the path of Katy Styles’ life 100%. What could have turned into despair for a life lost has instead become an embrace of the possibilities in her new life. “It’s great to have a Plan A but it’s what you can make of a Plan B that is the test of somebody’s mettle, “Styles told Aspire in a recent interview.
Styles has managed to adapt her teaching skills to campaigning, becoming a respected advocate on health and social care issues and gaining national recognition for her work from the British Parliament. A firm believer in creating positive change whatever life throws at you, Styles is proof that you can take an alternative route to the one planned and make a difference. In 2018, she set up the award winning We Care Campaign, campaigning to get a better deal for the U.K.’s 7 million unpaid carers.
Plan B – When You Never Know What is Around the Corner is the topic Styles spoke about at Aspire’s Trailblazing Leadership Conference in London. In a recent Aspire interview, we talked to Styles about her challenges and successes and how we all can learn how to embrace a Plan B if life throws us a curve.
1. Take time to grieve for the life that you have lost, for all the things you thought you were going to do.
You do need some processing time at the start. You do go through the classic stages of grief: the anger; the denial; the acceptance. You do have to work through that. It took maybe a year or so for me to get to a place I was comfortable with it.
2. Figure out what’s best for you.
If you are really struggling to sustain a work role and a caring role, figure out what has to go because you can’t run on an empty battery.
3. Re-evaluate often.
In most cases, things are always changing, they are never static. For me, my husband has a deteriorating condition. It’s not frozen in time and this is not as bad as it’s going to get. It’s constantly getting worse. You have to think OK, this is what I can do now and this is what we can do in 6 months and this is what I may be able to do in the future.
You have to move along that continuum. I do have to re-evaluate everything I’m doing and what I’m able to put in extra other than caring for him and increasingly also caring for my mother. That’s something we come around to. At the start I was there to support him to continue to do his job for as long as he could. I was the back-up for all he did. I gave up my career because I thought it was really important that he was able to maintain what he needed to do for as long as he could, to give him some purpose and normality after being diagnosed.
4. Redefine your identity.
I got into the habit of saying, “I’m just a…” I was a teacher and people would ask me and I’d say, ‘I’m a teacher. I teach geography and I teach… and that’s who you are. I got into the habit of saying, “I’m just a carer” or “I’m just Mark’s helper.” I think you’ve got to learn that you’re never just anything. I twisted that idea around to that “I’m a carer and a campaigner.” That helps because you do lose your confidence. You don’t know who you are. You were going along that Plan A and then all of a sudden, you’re not.
5. Be open to opportunities.
Some of the greatest things that have happened to me since I founded the We Care Campaign, I have stumbled across but I always thought “I’ve got to go for that.” You’ve got to push yourself out of your comfort zone.
6. Believe in your skill set.
Again, I thought, “I’m a teacher, that’s all I can do.” Actually, when you break it down that means I can do so many things: I can do independent work; I can present; I can give speeches because I’m used to doing that six times a day, five days a week; I can organize and prioritisz my time.
These are all things that other roles need, aren’t they? We put ourselves down. Often, we say, “Oh, I’m just doing this.” But it’s never that because you’re juggling so many other parts of other people’s lives as well as your own.
7. Find levity.
This story could sound quite tragic. But I do try to have some fun with the things that I do. That’s vitality important. My fun now is actually speaking to a room full of politicians and seeing that moment when I realize they get what I’m saying. That’s quite a buzz.
8. Put in self-care
Carers and caregivers are really bad at looking after themselves. You never know how long your role is going to last or how long you will be caring for. You can’t run on an empty battery. If your battery’s empty, you’re not going to be able to do anything for anyone else.
9. Decide what’s important.
Look at your job role, running your home, your caring role and figure out what matters. Is it that your house is spotlessly clean? Or can you let that go? Do you have to go to every appointment with the person your supporting or can you let someone else help you? What’s important to you and what can you let go?
Katy Styles | Courtesy of Katy Styles
Looking ahead and getting organized before anything crops up. There is an awful lot you can plan for when you don’t know what the future holds. From having prepared meals in the freezer. It makes all the difference to have healthy meals that you know you can slap in the oven when time is short. If I’m doing anything I look ahead across the whole week. For example, I knew I was having a conversation with you, so I got myself prepared well in advance because you just don’t know on the day whether you’re going to have to rush off and handle a crisis.
That happened a short while back. I got a call at midnight. I also help care for my mother and she doesn’t live close by. I had to wake my husband up and go over there. I knew that day I had a phone call to make so I just made sure that I took everything with me to do it from there. It’s amazing what you can do from anywhere today. I don’t think I would survive if I was living ‘Just in time,’ thinking about my campaigning or caring role. You couldn’t do it. It would stress me out.
By looking ahead, you can fit in some down time for yourself. I have to survive on less sleep and not doing as much exercise as I once did, so you have to be ready to snatch your moments. When my husband is sleeping in the afternoon, I can pop out for twenty minutes and have a walk. It’s about all being sensible with your time, it’s good time management really.
1. Figure out what you’re fighting for, what’s your cause, your purpose?
I did fall into campaigning by accident. My husband has a particular medical condition and I went to a conference about that condition, run by a health charity. I struck up a conversation with a member of staff there about what I could do to help.
I quickly realized there were all sorts of things that I could do to support their work. We’ve all got a campaign within us, a burning injustice we are moved by. We’re all fighting for something whether it’s to get our child more facilities in their school; whether we’re trying to get improved parking in our town, or city or by reducing the plastic the supermarket uses; we all have a campaign we can support. It’s how much time you want to put towards that issue. Can you join up with other people supporting that campaign or do you want to start your own campaign?
You are after all constantly fighting for the person you care for to get the best care and support them. It’s never ending. Campaigning is an extension of that. When I was considering whether to start my own campaign there was a part of me that thought, ‘If I don’t do it, who is going to do it?’ I’ve got the skills, I can’t let my skills go to waste. I have got to do something with them.
I never thought “Why has this happened to me?”. A big part of my growth throughout this period has been recognizing that is important to empower people to do something positive when they think everything is lost.
2. Find your village.
The only reason I’m here is because other women have supported me to do this. There’s my neighbor who’s popped in to see my husband when I’m at a meeting. There’s the politician who has supported me because they had a caring role themselves. I have to say it is women who have supported me to get to this point with my campaign and many women that have shared their stories about their caring roles, I’ve been lucky to have that support.
3. Join forces with like-minded people.
That’s absolutely key. I’m part of a wider group of campaigners. We don’t all campaign on the same things, but we all support each other’s campaigns. We check in with each other to make sure we’re practicing self-care. If we can use social media to amplify their voice, we do that. They do that for me and that’s incredible. I have a village of like-minded individuals supporting me and that’s just the most marvelous feeling.
Probably just not going for everything. If you see an opportunity, you’ve got to go for it. If you don’t, you’ve missed it and you’ll never know. I think sometimes, especially when you’re dealing with politicians, you think about the thing that you could have said and beat yourself up. “I should have said this, I should have said that.” I’ve learned, you can’t be so critical because you have at most, 2 minutes with a politician. I used to go away and mull it over. It did nobody any good. I now think I’ll get another opportunity.
I’ve been with my husband since I was 16, I’m 51 now so I knew he was really special then, but I didn’t realize quite how special because he never complains and says “Why me?” He is always trying to make it better for the next person. That is inspiring.
I’ve become quite a meerkat, you know where you pop up and look around for opportunities. I think, “I just found this little thing and that little thing has led to the next thing.” I wouldn’t have had these opportunities teaching. I wouldn’t have seen any of those things or been to those places. I don’t think I was quite as confident as I am now speaking to other people. People can underestimate you an awful lot. I’m always amazed that people say to me, “You know, you’ve given a really good speech today. That was really great.” And I think, “Actually, as a teacher, I should be able to do that; I should be able to gauge my audience; I should be able to have pace and be engaging.” There’s something about being underestimated. You never know someone’s back story.
That’s so important when dealing with carers /caregivers or the people being cared for you don’t know what their story is. There will be something special in everyone. You just have to find it.
I believe humans are instinctively good.
We are in a horrendous situation in the U.K. where people are fighting on two opposing sides about whether we will leave the European Union or not and everything seems quite toxic. My We Care Campaign is all about caring, getting unpaid carers/ caregivers valued. Therefore, it’s important to run my campaign in a caring way. I’m learning “it’s nice to be nice.” You may not agree with somebody, they may not give you what you want in a meeting but being nice and trying to see it from their point of view is vital. It’s no good getting angry and aggressive. You’re never going to get anywhere. It is also not sustainable.
Absolutely. For example, we’ve got a really great coffee machine and having a really good coffee with my husband at home is one of the highlights of the day. That might not sound like much but to us that is the part of the day we hold dear.
*Interview has been condensed and edited for clarity and length.
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