Artist Series: Kathy Lean

Kathy Lean is a Newcastle-based artist and student managing chronic illness, documenting the “roller-coaster” of her life on TikTok. Here she shares how tube-feeding has given her the freedom to do more of what she wants – like making art, to tell her story.

In a nutshell, the reason you have a tube is because you have feeding difficulties caused by health conditions, right?

Yes. Over the past five years I’ve had chronic health conditions and I had a surgery done on my heart. After that, I just completely lost my appetite and was nauseous all the time. Eventually my weight got to a critical level, so I ended up in hospital and they said, ‘look, it’s time we start thinking about re-feeding [reintroducing food after malnourishment] you’.

So that happened – I was re-fed and then they took the NG-tube out and threw me back out into the community with no diagnosis and no long-term plan other than just ‘try to eat’. That went on for two years, but on my second admission

I had some really good dietitians who let me go home with the NG, because I didn’t like the idea of having to go into hospital every time I needed nutrition.

It’s been really hard to find out what’s wrong. We originally thought that the heart procedure actually caused my condition, but now we aren’t 100 per cent sure what’s caused my autonomic dysfunction. The vagus nerve controls your oesophagus and your digestion, and we’ve had some tests come back that show damage to this nerve is plausible.

When we found out that my oesophagus was involved we decided to switch to the PEG feeding, so that I could at least try to have some oral intake without choking.

How have you gone with adjusting to your PEG?

The surgery was rough and the G-tube took a little bit of getting used to. It needs more care than a nasal tube, but it does provide more normality in that it’s not so outwardly visual. I can keep it covered.

Dealing with the tube does add an extra half-hour in the morning and an extra 20 minutes before bed, but I think it’s been the right decision for me.

How do you feel about tube-feeding, generally?

I don’t love it. But I think the alternative is worse. I have so many things that I want to do with my life and in the years prior to having the tube, I had no energy. I couldn’t go out. I could eat enough to keep myself alive, but not really live. And that was really frustrating because I lost social circles and I was struggling with study.

It got to the point where I needed something longer term to support me to actually be able to live while we’re still figuring out what’s going on medically. And I’m really lucky that my current doctor is on the same page as me with that, along with my dietitian.

It’s not ideal, but I’m a heck of a lot happier now because I’m getting to do things that I enjoy. I get to do my art. And while managing tube-feeding isn’t easy, I can have a bit more normality in my life because of it.

What does eating look like for you, day-to-day?

I’m using the [Nutricia] Nutrison protein products but I’m just about to do a trial on another low-allergen product, so we’ll see how that goes. I still do get a lot of symptoms from it and I’m really frustrated that we don’t have all the options that America has when it comes to real food formula blends.

The US has Kate Farms and Nourish, which are all-organic products, and I really wish it was easier to have those things here. But because food is what upsets my stomach, and I can’t handle boluses, I haven’t really gone down the blends route yet. Hopefully I’ll get to a stage where I can move on to that.

I’m still encouraged to try to eat at every meal, and I do, but usually it’s very basic stuff. I have a bit of porridge. I have a couple of SAO crackers here and there. Just small things. Because the risk of not using your stomach is that you lose function of your stomach. I’m really determined to kind of keep that function for as long as I can until we work out better ways of treating whatever’s going on.

I still like food, I can’t say I love it because it does make me feel so sick. But I just try to eat it as much as I can.

You say you can’t handle boluses - do you use a pump for your tube-feeds?

Yes. I’m connected to my pump pretty much 24 hours a day. I run my nutrition overnight, because that makes me so sick. I prefer to have it overnight and be sleeping as best I can with it, rather than running it through the day and feeling ill while I’m trying to do things. During the day, I run water or Hydralyte.

How do you transport your pump set-up?

I have a little backpack and use Sinchies products. I’ve got mobility issues as well – I’ve got arthritis and things like that – so to carry a bigger pack would not work at all. I use the 500ml Sinchies bags, which I just love because you can re-use them.

If I ever have to run my nutrition through the day, I’ll probably transfer it into those kinds of bags, too, because they don’t have to be hung. You don’t need gravity. It’s great that their bags are also compatible with the Nutricia giving sets.

Feeding with the pump means things take a little bit longer, but the benefits of feeding this way, for me, outweigh any negative things that come with it. I’m so much happier that my body is able to be nourished better than it could be, because of my illness.

You’re an art student – what’s your medium of choice?

At the moment my major and my minor are in print-making and sculpture.

How do your art and tube-feeding intersect?

They always intersect. Last year I met an artist who’s got MS [multiple sclerosis] and she introduced me to the concept of autopathography. Autopathography is along the lines of autobiography, but it’s giving a patient the space to tell their own story of illness.

Often when we’ve got an illness our story is so dictated by what’s in our medical notes, and that experience is completely different to the person who’s going through it. So my art is telling my story – my side, my emotions – and it helps me so much, because often we keep those things inside and people don’t really know how we feel. I get a chance to express it in a way that makes sense to me.

I’ve never heard of autopathography before. I love the sound of it.

I’ve always made art about how I was feeling, but I didn’t really know why I did it. I just thought it’s because that’s what’s in my head. It is what’s in my head, but now I really understand why I’ve got such a connection to it. Down the track, my art may go in different directions. But right now, this is the direction that’s helping me the most mentally. And I love doing it.

It’s so good that you have that outlet - and it’s not your only one. Why is TikTok your platform of choice for sharing about your life and tube-feeding?

It’s another medium for me. Making these short little videos that are like, in a way, a home movie, but they’re like a documentary at the same time. It was just an easy way to condense my week, or a day, into a short video to share. I don’t know why I picked TikTok, it’s just where I landed.

How does your audience tend to respond to your tube-feeding content?

It’s been fairly positive so far. I mean, I’ve had maybe one or two negative comments but mostly I’ve gotten a lot of support from everyone.

What words of advice do you have for people – especially young adults – who are new to tube-feeding?

I think mindset is so important. When we’re ill, we can fall into the trap of thinking, ‘I’ve got a tube now so I won’t be able to do anything’. And while our illnesses limit us, tube-feeding doesn’t have to. Tube-feeding has now given me a social life, it has given me the ability to be able to study full-time, and it’s given me the ability to be able to try and exercise again.

I don’t think people realise that tube-feeding doesn’t have to be a limitation. I weld while connected to my pump. I’m using high-powered machinery, you know. My TAFE is so open and so caring that they’ve put in accommodations for me, so it’s not a barrier. You don’t have to let it be a barrier to living your life.