WEBVTT 00:00:00.000 --> 00:00:00.752 align:middle line:90% 00:00:00.752 --> 00:00:02.710 align:middle line:84% - I forgot to check if I had stuff in my teeth. 00:00:02.710 --> 00:00:03.350 align:middle line:90% - You don't. 00:00:03.350 --> 00:00:04.270 align:middle line:90% [LAUGHTER] 00:00:04.270 --> 00:00:08.860 align:middle line:84% - This shirt, by the way, it's got the worst buttons-- 00:00:08.860 --> 00:00:09.630 align:middle line:90% - How it was. 00:00:09.630 --> 00:00:11.270 align:middle line:90% - --that I ever-- 00:00:11.270 --> 00:00:12.310 align:middle line:90% ever buttoned. 00:00:12.310 --> 00:00:13.630 align:middle line:90% So, and hello. 00:00:13.630 --> 00:00:14.444 align:middle line:90% That's amazing. 00:00:14.444 --> 00:00:15.360 align:middle line:90% That is really clever. 00:00:15.360 --> 00:00:16.160 align:middle line:90% So you can't see a lens. 00:00:16.160 --> 00:00:16.455 align:middle line:90% - Physics. 00:00:16.455 --> 00:00:17.120 align:middle line:90% Yeah, exactly. 00:00:17.120 --> 00:00:17.250 align:middle line:90% - Yeah. 00:00:17.250 --> 00:00:19.791 align:middle line:84% - Yeah, but your head is now in the wrong place to your body, 00:00:19.791 --> 00:00:20.754 align:middle line:90% but that's fine. 00:00:20.754 --> 00:00:21.254 align:middle line:90% Mhm. 00:00:21.254 --> 00:00:23.158 align:middle line:90% - You're not religious, are you? 00:00:23.158 --> 00:00:24.981 align:middle line:90% - No, I am not religious. 00:00:24.981 --> 00:00:25.480 align:middle line:90% - Yes. 00:00:25.480 --> 00:00:27.110 align:middle line:84% - The one... there's the one question. 00:00:27.110 --> 00:00:28.825 align:middle line:84% Is it the one about your dad's values? 00:00:28.825 --> 00:00:30.004 align:middle line:90% - --valued most in his life? 00:00:30.004 --> 00:00:30.504 align:middle line:90% - Yeah. 00:00:30.504 --> 00:00:30.988 align:middle line:90% - I don't know. 00:00:30.988 --> 00:00:31.571 align:middle line:90% - That's fine. 00:00:31.571 --> 00:00:35.350 align:middle line:90% 00:00:35.350 --> 00:00:39.510 align:middle line:90% - So, shall we try? 00:00:39.510 --> 00:00:44.040 align:middle line:84% My dad's name was Gareth, and my name is Tanwen. 00:00:44.040 --> 00:00:45.950 align:middle line:84% My dad really loved being outdoors, 00:00:45.950 --> 00:00:47.584 align:middle line:84% he was a gardener, when I grew up. 00:00:47.584 --> 00:00:49.500 align:middle line:84% He loved music as well, and he loved to dance. 00:00:49.500 --> 00:00:51.570 align:middle line:84% And yeah, he didn't like to wear shoes. 00:00:51.570 --> 00:00:54.630 align:middle line:90% So, barefooted quite a lot. 00:00:54.630 --> 00:00:58.464 align:middle line:84% He was a very positive man, but also quite a quiet man. 00:00:58.464 --> 00:01:00.630 align:middle line:84% So he would listen a lot and then occasionally he'll 00:01:00.630 --> 00:01:03.405 align:middle line:84% come out with a story from nowhere and sort of surprise 00:01:03.405 --> 00:01:04.019 align:middle line:90% you. 00:01:04.019 --> 00:01:07.020 align:middle line:84% He used to like, run away from boarding school in the evenings 00:01:07.020 --> 00:01:09.720 align:middle line:84% to go and watch Bob Marley and Jimi Hendrix 00:01:09.720 --> 00:01:11.790 align:middle line:84% and stuff, which I always thought was very cool. 00:01:11.790 --> 00:01:14.830 align:middle line:90% He was very caring, very kind. 00:01:14.830 --> 00:01:16.830 align:middle line:84% I remember me and my friends sitting in the park 00:01:16.830 --> 00:01:19.290 align:middle line:84% and seeing this chap cycling towards us 00:01:19.290 --> 00:01:21.430 align:middle line:90% and he just looked so crazy. 00:01:21.430 --> 00:01:25.460 align:middle line:84% We were just commenting on how weird he looked and as he got 00:01:25.460 --> 00:01:27.400 align:middle line:90% close, I realised it was my dad. 00:01:27.400 --> 00:01:31.050 align:middle line:84% And I'd ordered a rug, a big zebra print rug off e-Bay, 00:01:31.050 --> 00:01:33.290 align:middle line:84% and he'd gone to the Post Office to collect it, 00:01:33.290 --> 00:01:35.130 align:middle line:84% but his car was in the garage, so he 00:01:35.130 --> 00:01:39.197 align:middle line:84% had to strap this giant rug to his back and cycle it home. 00:01:39.197 --> 00:01:41.280 align:middle line:84% We were like, oh look at what this crazy guy is... 00:01:41.280 --> 00:01:43.640 align:middle line:84% Oh, it's my dad doing something really nice for me. 00:01:43.640 --> 00:01:46.580 align:middle line:90% 00:01:46.580 --> 00:01:50.951 align:middle line:84% - Could you tell me about the illness? 00:01:50.951 --> 00:01:51.450 align:middle line:90% - Yeah. 00:01:51.450 --> 00:01:54.260 align:middle line:90% And so, I was 17. 00:01:54.260 --> 00:01:56.979 align:middle line:84% It was quite a long time that he had issues. 00:01:56.979 --> 00:01:59.520 align:middle line:84% He had a problem with two of his fingers not moving properly, 00:01:59.520 --> 00:02:03.470 align:middle line:84% and he was going to see many doctors about what it could be. 00:02:03.470 --> 00:02:05.390 align:middle line:84% And fell off a ladder, he fell over walking, 00:02:05.390 --> 00:02:06.516 align:middle line:90% and he wasn't a clumsy guy. 00:02:06.516 --> 00:02:08.431 align:middle line:84% These are not normal things that would happen, 00:02:08.431 --> 00:02:10.659 align:middle line:84% and so when I found out he had Motor Neurone Disease, 00:02:10.659 --> 00:02:12.950 align:middle line:84% I wanted to look it up more and I found out immediately 00:02:12.950 --> 00:02:14.780 align:middle line:84% that it's something that most people tend 00:02:14.780 --> 00:02:16.980 align:middle line:90% to die of within 14 months. 00:02:16.980 --> 00:02:20.472 align:middle line:84% It was a disease that kills your nervous system. 00:02:20.472 --> 00:02:22.430 align:middle line:84% Without your nerves, your muscles stop working. 00:02:22.430 --> 00:02:26.134 align:middle line:84% You stop being able to breathe, talk, walk, move. 00:02:26.134 --> 00:02:27.550 align:middle line:84% It just shuts-- it shuts you down. 00:02:27.550 --> 00:02:28.966 align:middle line:84% You can't-- You can't do anything. 00:02:28.966 --> 00:02:32.290 align:middle line:90% 00:02:32.290 --> 00:02:33.530 align:middle line:90% When he told me, we-- 00:02:33.530 --> 00:02:34.774 align:middle line:90% I started crying. 00:02:34.774 --> 00:02:35.690 align:middle line:90% My mum started crying. 00:02:35.690 --> 00:02:36.440 align:middle line:90% He started crying. 00:02:36.440 --> 00:02:39.980 align:middle line:84% And we all just sat there, crying for quite a long time 00:02:39.980 --> 00:02:41.200 align:middle line:90% before any of us could talk. 00:02:41.200 --> 00:02:43.790 align:middle line:90% 00:02:43.790 --> 00:02:45.384 align:middle line:90% My grandad died of it. 00:02:45.384 --> 00:02:46.550 align:middle line:90% My great grandma died of it. 00:02:46.550 --> 00:02:50.660 align:middle line:84% Because it runs in the family, it's hereditary. 00:02:50.660 --> 00:02:53.930 align:middle line:84% It means that myself, or my brothers, or my cousins, 00:02:53.930 --> 00:02:54.830 align:middle line:90% could all die of it. 00:02:54.830 --> 00:02:57.320 align:middle line:90% We've all got a 50% chance. 00:02:57.320 --> 00:02:59.330 align:middle line:84% So yes, it's one person every generation, 00:02:59.330 --> 00:03:01.630 align:middle line:84% it sort of seems to take in my family. 00:03:01.630 --> 00:03:05.997 align:middle line:90% 00:03:05.997 --> 00:03:08.580 align:middle line:84% One of the things we had to talk about was that I was planning 00:03:08.580 --> 00:03:15.930 align:middle line:84% on going travelling for a year, and I initially said that I 00:03:15.930 --> 00:03:20.064 align:middle line:84% just wouldn't go, but he said that he really wanted me to go, 00:03:20.064 --> 00:03:21.480 align:middle line:84% and he wanted me to enjoy my life, 00:03:21.480 --> 00:03:24.060 align:middle line:84% and he didn't want me to stay with him. 00:03:24.060 --> 00:03:27.450 align:middle line:84% So, in the end I compromised and I bought a six month flexible 00:03:27.450 --> 00:03:30.160 align:middle line:84% return, so that I could come back at any point 00:03:30.160 --> 00:03:32.406 align:middle line:90% if he got a lot worse. 00:03:32.406 --> 00:03:33.780 align:middle line:84% I didn't have money to phone them 00:03:33.780 --> 00:03:36.960 align:middle line:84% because it was the days before FaceTime and all this stuff. 00:03:36.960 --> 00:03:40.150 align:middle line:84% So, I would get on the-- go to an internet cafe, 00:03:40.150 --> 00:03:45.150 align:middle line:84% because smartphones didn't exist, and e-mail my mum. 00:03:45.150 --> 00:03:48.510 align:middle line:84% And she was saying that she was getting worse, 00:03:48.510 --> 00:03:50.790 align:middle line:84% but I didn't know, I didn't know anything 00:03:50.790 --> 00:03:51.950 align:middle line:90% from not speaking to him. 00:03:51.950 --> 00:03:54.450 align:middle line:84% And then when I was in Vietnam, I heard my name shouted out, 00:03:54.450 --> 00:03:56.370 align:middle line:84% and it was one of my brother's best friends, 00:03:56.370 --> 00:03:57.840 align:middle line:84% and he was like, I'm just going to call them, 00:03:57.840 --> 00:04:00.006 align:middle line:84% because he had a phone that he could call them with, 00:04:00.006 --> 00:04:00.840 align:middle line:90% with money on. 00:04:00.840 --> 00:04:03.434 align:middle line:84% I spoke to my mum first, and then she said, 00:04:03.434 --> 00:04:04.850 align:middle line:84% OK I'm going to put you on to Dad, 00:04:04.850 --> 00:04:07.280 align:middle line:84% but I need to warn you that it's-- 00:04:07.280 --> 00:04:09.720 align:middle line:90% he's got a lot worse. 00:04:09.720 --> 00:04:12.750 align:middle line:90% And she-- he-- 00:04:12.750 --> 00:04:16.470 align:middle line:84% --she passed the phone on to him and I could barely 00:04:16.470 --> 00:04:17.190 align:middle line:90% understand him. 00:04:17.190 --> 00:04:22.000 align:middle line:84% His voice had deteriorated so badly and I got really upset. 00:04:22.000 --> 00:04:26.700 align:middle line:84% And I-- I just said, Mum should I, shall I come home now? 00:04:26.700 --> 00:04:29.310 align:middle line:84% And she said-- I think I had two months left, 00:04:29.310 --> 00:04:31.560 align:middle line:84% and she was like, no he doesn't want you to come home. 00:04:31.560 --> 00:04:33.810 align:middle line:84% You need to stay out and enjoy yourself. 00:04:33.810 --> 00:04:36.210 align:middle line:84% He wants you to live your life, and you can come back, 00:04:36.210 --> 00:04:39.000 align:middle line:90% and he'll be waiting for you. 00:04:39.000 --> 00:04:41.190 align:middle line:84% When I came back, he'd deteriorated a lot. 00:04:41.190 --> 00:04:45.060 align:middle line:84% I think it was four months that I'd been back before he died. 00:04:45.060 --> 00:04:47.100 align:middle line:90% He was very skinny. 00:04:47.100 --> 00:04:49.500 align:middle line:90% He had no strength in him. 00:04:49.500 --> 00:04:52.290 align:middle line:84% He was in a wheelchair most the time. 00:04:52.290 --> 00:04:54.270 align:middle line:90% His tongue muscle was also-- 00:04:54.270 --> 00:04:55.230 align:middle line:90% started to deteriorate. 00:04:55.230 --> 00:04:57.230 align:middle line:84% To begin with, I couldn't understand him at all, 00:04:57.230 --> 00:04:59.760 align:middle line:84% but after getting used to his grunts and things, 00:04:59.760 --> 00:05:01.920 align:middle line:90% I began to understand him. 00:05:01.920 --> 00:05:03.680 align:middle line:84% And I became his, sort of, key carer 00:05:03.680 --> 00:05:05.945 align:middle line:90% so I spent every day with him. 00:05:05.945 --> 00:05:08.445 align:middle line:84% There was a lot of the time I would ask him if he was having 00:05:08.445 --> 00:05:09.940 align:middle line:90% like a bad day, or something. 00:05:09.940 --> 00:05:11.730 align:middle line:90% Like, how are you, Dad? 00:05:11.730 --> 00:05:13.860 align:middle line:90% How are you feeling? 00:05:13.860 --> 00:05:16.830 align:middle line:84% And rather than say, I'm having an awful day, he would say, 00:05:16.830 --> 00:05:18.670 align:middle line:90% I'm having the time of my life. 00:05:18.670 --> 00:05:21.659 align:middle line:84% When he was ill he wanted to be outside and going on walks 00:05:21.659 --> 00:05:23.450 align:middle line:84% and be just like, when it was nice weather, 00:05:23.450 --> 00:05:25.984 align:middle line:84% he'd just be sat in the garden with his t-shirt 00:05:25.984 --> 00:05:27.150 align:middle line:90% off just soaking in the sun. 00:05:27.150 --> 00:05:29.570 align:middle line:84% And so it looked like he had like an aura around him. 00:05:29.570 --> 00:05:30.810 align:middle line:90% He was like, glowing. 00:05:30.810 --> 00:05:33.180 align:middle line:84% Even though he was like this little skeleton of a man 00:05:33.180 --> 00:05:35.280 align:middle line:84% and really sick, he just looked incredible. 00:05:35.280 --> 00:05:36.880 align:middle line:90% He was, yeah, he looked amazing. 00:05:36.880 --> 00:05:39.510 align:middle line:90% 00:05:39.510 --> 00:05:41.850 align:middle line:84% And yeah, we had a really nice time together. 00:05:41.850 --> 00:05:45.150 align:middle line:90% 00:05:45.150 --> 00:05:46.980 align:middle line:84% He was doing really well, actually. 00:05:46.980 --> 00:05:50.260 align:middle line:90% 00:05:50.260 --> 00:05:52.387 align:middle line:90% He had a couple of problems. 00:05:52.387 --> 00:05:54.220 align:middle line:84% He had to go to hospital to get checked out, 00:05:54.220 --> 00:05:57.230 align:middle line:84% and when he was in a hospital, he got a chest infection. 00:05:57.230 --> 00:06:04.760 align:middle line:84% He came back and sort of got worse very quickly. 00:06:04.760 --> 00:06:09.830 align:middle line:84% There was a night that he was not doing well, 00:06:09.830 --> 00:06:11.830 align:middle line:90% and I was checking on him. 00:06:11.830 --> 00:06:14.219 align:middle line:84% And he had all these different machines, 00:06:14.219 --> 00:06:16.010 align:middle line:84% like an oxygen machine to help him breathe. 00:06:16.010 --> 00:06:20.000 align:middle line:84% He had a machine to stick down his throat to suck phlegm out, 00:06:20.000 --> 00:06:23.160 align:middle line:84% because his body couldn't do it and it would make him choke. 00:06:23.160 --> 00:06:25.130 align:middle line:90% It was really grim. 00:06:25.130 --> 00:06:27.949 align:middle line:84% I said I'd check on him in an hour and I went up to my room. 00:06:27.949 --> 00:06:29.990 align:middle line:84% And I turned on the TV and I started watching it, 00:06:29.990 --> 00:06:30.990 align:middle line:90% and I stuck with it. 00:06:30.990 --> 00:06:33.220 align:middle line:84% And thought, it's an hour and a half, he'll be fine. 00:06:33.220 --> 00:06:35.870 align:middle line:84% And when I went down after an hour and a half, 00:06:35.870 --> 00:06:39.110 align:middle line:84% he had finally, like, he'd got rid of all of his machines, 00:06:39.110 --> 00:06:43.921 align:middle line:84% and he had the football on, but he wasn't breathing anymore. 00:06:43.921 --> 00:06:50.180 align:middle line:90% 00:06:50.180 --> 00:06:53.120 align:middle line:84% When he first died, I was upset so often. 00:06:53.120 --> 00:06:54.090 align:middle line:90% I cried so much. 00:06:54.090 --> 00:06:56.600 align:middle line:84% Even two, three years later, I'd be talking about him 00:06:56.600 --> 00:06:57.980 align:middle line:90% and I'd start crying. 00:06:57.980 --> 00:07:00.070 align:middle line:90% I'll never talk to him again. 00:07:00.070 --> 00:07:02.780 align:middle line:90% And I still find that hard. 00:07:02.780 --> 00:07:06.850 align:middle line:90% But, yeah. 00:07:06.850 --> 00:07:09.380 align:middle line:84% So, that's-- yeah. that's what gets me. 00:07:09.380 --> 00:07:14.510 align:middle line:84% But, on the whole, I can talk about it without crying. 00:07:14.510 --> 00:07:17.900 align:middle line:84% Now, and that's definitely time has helped so much, 00:07:17.900 --> 00:07:19.760 align:middle line:90% it really does. 00:07:19.760 --> 00:07:21.130 align:middle line:90% It does help. 00:07:21.130 --> 00:07:26.419 align:middle line:84% - You told me before that you were angry with the hospital? 00:07:26.419 --> 00:07:27.140 align:middle line:90% Is that right? 00:07:27.140 --> 00:07:29.060 align:middle line:90% - Yeah. 00:07:29.060 --> 00:07:30.980 align:middle line:84% To begin with, I was really cross, 00:07:30.980 --> 00:07:33.290 align:middle line:84% because he was doing so well and he was still strong, 00:07:33.290 --> 00:07:34.520 align:middle line:84% like he could still walk a little bit, 00:07:34.520 --> 00:07:36.561 align:middle line:84% and he could still talk a bit, and he could still 00:07:36.561 --> 00:07:39.650 align:middle line:84% eat a little bit, like, he wasn't ready to die. 00:07:39.650 --> 00:07:41.750 align:middle line:84% And the reason that he did die was 00:07:41.750 --> 00:07:44.906 align:middle line:84% because he'd gone to hospital and caught a chest infection. 00:07:44.906 --> 00:07:46.280 align:middle line:84% If he hadn't gone to hospital, he 00:07:46.280 --> 00:07:48.740 align:middle line:84% would have lived for another three to four months, I think. 00:07:48.740 --> 00:07:54.620 align:middle line:84% So at first I was angry, but the more I would think about it, 00:07:54.620 --> 00:07:58.430 align:middle line:84% I realised that he was actually amazing, 00:07:58.430 --> 00:07:59.472 align:middle line:90% that he went when he did. 00:07:59.472 --> 00:08:01.138 align:middle line:84% The fact that he still had some dignity, 00:08:01.138 --> 00:08:03.400 align:middle line:84% he could still walk a little bit, talk a little bit, 00:08:03.400 --> 00:08:04.200 align:middle line:90% eat a little bit. 00:08:04.200 --> 00:08:06.230 align:middle line:84% I think of my grandad, for example, he 00:08:06.230 --> 00:08:09.650 align:middle line:84% was bed bound for a long time, just rotting away in a bed 00:08:09.650 --> 00:08:12.110 align:middle line:84% before he actually died so, I'm so, 00:08:12.110 --> 00:08:14.570 align:middle line:84% I'm so happy, now, that he died when 00:08:14.570 --> 00:08:17.330 align:middle line:84% he did of the chest infection and still had some dignity, 00:08:17.330 --> 00:08:21.020 align:middle line:90% and some life left in him. 00:08:21.020 --> 00:08:23.720 align:middle line:84% And, yeah, I think that was the best 00:08:23.720 --> 00:08:26.380 align:middle line:90% thing that could have happened. 00:08:26.380 --> 00:08:38.682 align:middle line:90%