1
00:00:01,000 --> 00:00:06,139
[Opening theme music]

2
00:00:13,246 --> 00:00:17,650
Hello, and welcome to this episode
of ArtsAbly in Conversation.

3
00:00:17,650 --> 00:00:19,586
My name is Diane Kolin.

4
00:00:19,919 --> 00:00:25,558
This series presents artists, academics,
and project leaders who dedicate their

5
00:00:25,592 --> 00:00:31,664
time and energy to a better accessibility
for people with disabilities in the arts.

6
00:00:32,098 --> 00:00:37,737
You can find more of these conversations
on our website, artsably.com,

7
00:00:37,737 --> 00:00:42,909
which is spelled A-R-T-S-A-B-L-Y dot com.

8
00:00:44,077 --> 00:00:49,215
[Theme music]

9
00:00:55,989 --> 00:01:01,394
Today, ArtsAbly is in conversation
with Lia Pas, a Saskatoon-based Canadian

10
00:01:01,428 --> 00:01:08,168
multidisciplinary artist who works in the
field of music, writing, and visual arts.

11
00:01:08,268 --> 00:01:12,138
You can find the resources mentioned
by Lia Pas during this episode

12
00:01:12,138 --> 00:01:16,276
on ArtsAbly's website 
in the blog section.

13
00:01:17,310 --> 00:01:22,449
[Piano music]

14
00:02:53,373 --> 00:02:57,744
Welcome to this new episode
of ArtsAbly in Conversation.

15
00:02:57,744 --> 00:03:02,415
Today, I am with Lia Pas, who is
a Saskatoon-based 

16
00:03:02,415 --> 00:03:09,923
Canadian multidisciplinary artist who works 
in the field of music, writing, and visual arts.

17
00:03:09,956 --> 00:03:11,591
Welcome, Lia.

18
00:03:12,392 --> 00:03:13,893
Hi, Diane.

19
00:03:13,927 --> 00:03:15,395
Thank you for inviting me.

20
00:03:15,428 --> 00:03:17,530
Thank you for being here.

21
00:03:17,564 --> 00:03:23,770
Okay, You have a very rich history
of connection with the arts, 

22
00:03:23,770 --> 00:03:27,640
whether it is by writing 
or through music.

23
00:03:27,674 --> 00:03:33,646
I wanted to start this interview by asking
you to talk about your background.

24
00:03:33,646 --> 00:03:39,319
What did you do for studies
and also what led you to your studies?

25
00:03:39,352 --> 00:03:47,260
I know it's in music, and we share that - 
we share a particular school.

26
00:03:47,460 --> 00:03:49,629
I'll let you present yourself.

27
00:03:50,897 --> 00:03:52,332
Okay.

28
00:03:52,332 --> 00:03:55,602
My background.

29
00:03:56,369 --> 00:03:58,237
It's a long story.

30
00:03:58,271 --> 00:04:02,075
I'll try to keep it succinct.

31
00:04:02,108 --> 00:04:03,943
I love long story, by the way.

32
00:04:03,977 --> 00:04:06,779
Okay.
[Laughs.]

33
00:04:09,349 --> 00:04:12,785
I was a musician. Growing up

34
00:04:12,819 --> 00:04:16,189
I played oboe and piano, primarily, 

35
00:04:16,189 --> 00:04:21,861
and went through all the 
Royal Conservatory Music levels 

36
00:04:23,429 --> 00:04:25,298
and started playing

37
00:04:25,298 --> 00:04:28,101
oboe professionally in my teens.

38
00:04:28,134 --> 00:04:32,705
I was the alternate oboeist
at the Saskatoon Symphony.

39
00:04:33,306 --> 00:04:39,212
I decided to study music at
York University because they had a very

40
00:04:39,212 --> 00:04:43,249
different program than most programs.

41
00:04:43,616 --> 00:04:49,022
I wanted to study world music,
improvisation, all those sorts of things, 

42
00:04:49,055 --> 00:04:52,425
and York was the place for that.

43
00:04:52,458 --> 00:04:55,895
So I went to York University.

44
00:04:56,429 --> 00:05:02,568
And then I ended up moving back
to Saskatoon because my husband

45
00:05:02,568 --> 00:05:04,871
got a great job here.

46
00:05:04,904 --> 00:05:08,808
So we moved back to Saskatoon
and settled here.

47
00:05:09,475 --> 00:05:13,846
In Saskatoon, I played
with the Symphony again on oboe.

48
00:05:13,846 --> 00:05:20,053
I did a lot of [gigs],
and I had a small theater company.

49
00:05:20,053 --> 00:05:23,022
We did two productions

50
00:05:23,056 --> 00:05:27,193
based on myths, The Descent of Inanna,

51
00:05:27,193 --> 00:05:29,195
and one called Baba Yaga's Hat.

52
00:05:29,228 --> 00:05:36,135
I wrote the pieces,
I wrote the music, I performed in them,

53
00:05:38,538 --> 00:05:41,874
And then we moved to Japan 
for a couple of years 

54
00:05:41,874 --> 00:05:45,211
where we taught English,
and I didn't really do anything artistic

55
00:05:45,211 --> 00:05:51,184
except for go see a bunch 
of cool Japanese theatre

56
00:05:51,184 --> 00:05:55,088
that was my artistic thing in Japan.

57
00:05:55,088 --> 00:05:58,758
And after a couple of years
there, I really wanted to get back

58
00:05:58,791 --> 00:06:02,362
into my practice, my artistic practice.

59
00:06:02,395 --> 00:06:08,101
I applied for Master's in theatre programs

60
00:06:08,401 --> 00:06:12,038
because I hadn't had any 
formal education in theater.

61
00:06:13,005 --> 00:06:17,877
I was accepted to a couple of places,
but I chose Dartington College

62
00:06:17,910 --> 00:06:25,451
in Devon, UK, partially because they
had a very multidisciplinary program,

63
00:06:25,451 --> 00:06:27,353
and they no longer exist.

64
00:06:27,387 --> 00:06:32,091
They got melded into Plymouth
University, I think, but it was

65
00:06:32,125 --> 00:06:34,660
a really tiny arts college.

66
00:06:34,694 --> 00:06:40,600
I think there were four Masters
in theatre students, 

67
00:06:41,100 --> 00:06:47,106
but we also had multidisciplinary classes with 
the writing students and the music students.

68
00:06:47,140 --> 00:06:51,377
I actually ended up doing a lot
of music there as well.

69
00:06:53,279 --> 00:06:57,250
But near the end of my degree,

70
00:06:57,250 --> 00:07:00,153
I got very, very sick.

71
00:07:00,553 --> 00:07:05,491
And by the time we got back to Canada,

72
00:07:05,525 --> 00:07:08,728
I ended up in hospital a week later with

73
00:07:08,728 --> 00:07:13,466
ulcerative colitis, and I almost died.

74
00:07:13,499 --> 00:07:15,601
That's no exaggeration.

75
00:07:15,635 --> 00:07:19,372
So it took me a couple
of years to recover.

76
00:07:19,372 --> 00:07:26,312
So that was my first experience
with chronic illness and disability

77
00:07:26,312 --> 00:07:32,685
because I couldn't work for
at least a year after that.

78
00:07:34,153 --> 00:07:40,393
Because of that experience, I actually
did a video piece because I wanted to get

79
00:07:40,393 --> 00:07:43,196
back into a multidisciplinary practice.

80
00:07:43,229 --> 00:07:49,569
I did a video poem called Susurration
about the heart

81
00:07:49,569 --> 00:07:54,941
and my experience of having to be really,
really careful about my heart

82
00:07:54,974 --> 00:07:58,678
because I was so anemic,
I was at risk for a heart attack,

83
00:07:58,711 --> 00:08:04,016
so I couldn't get my heart rate up,
and that took a lot of attention.

84
00:08:05,785 --> 00:08:10,590
And once I was recovered,
I started teaching yoga.

85
00:08:10,623 --> 00:08:16,195
I taught yoga before we went to Japan
a little bit, but I started teaching yoga

86
00:08:16,229 --> 00:08:23,369
again and started teaching voice as well.

87
00:08:23,903 --> 00:08:29,742
I forgot to say, I kind of switched
from oboe to voice at some point.

88
00:08:30,843 --> 00:08:35,281
I had studied a lot with the Roy Hart

89
00:08:35,314 --> 00:08:38,417
School of voice, which is actually

90
00:08:38,451 --> 00:08:44,056
very physical and very psychological and
a lot of movement and a lot of 

91
00:08:44,056 --> 00:08:49,528
what is your voice and 
what does your voice mean?

92
00:08:50,196 --> 00:08:56,569
I taught voice and yoga for a while,
and I ended up writing a lot of music

93
00:08:56,569 --> 00:09:00,172
for dancers, which was great.

94
00:09:00,172 --> 00:09:04,777
It was great to work with the body.

95
00:09:04,810 --> 00:09:09,348
A lot of the music I wrote for dancers,
the dancers would make sounds as well

96
00:09:09,348 --> 00:09:11,551
as they're be hearing recordings.

97
00:09:11,584 --> 00:09:14,854
That was awesome.

98
00:09:15,788 --> 00:09:22,562
And in 2015, I was working
with a dance theatre company in Calgary

99
00:09:22,595 --> 00:09:26,666
called La Caravan Dance Theatre.

100
00:09:26,699 --> 00:09:31,470
Maya Lewandowsky was the artistic director

101
00:09:31,470 --> 00:09:36,409
and choreographer and everything.

102
00:09:37,510 --> 00:09:43,449
She's now in Paris, actually,
doing a lot of Roy Hart work.

103
00:09:43,449 --> 00:09:45,851
That's how we met.

104
00:09:45,851 --> 00:09:52,191
While we were devising that dance opera,

105
00:09:53,859 --> 00:09:57,563
she got a flu of some sort, and I was

106
00:09:57,596 --> 00:10:03,102
staying with her, and I also got the flu,
and I was like, It's the flu.

107
00:10:03,135 --> 00:10:08,474
Went back to Saskatoon,
and I never recovered.

108
00:10:08,507 --> 00:10:13,045
I was so sick.

109
00:10:14,814 --> 00:10:17,984
I couldn't do anything.
I couldn't sing.

110
00:10:18,017 --> 00:10:20,853
For a while, I couldn't read or write.

111
00:10:20,853 --> 00:10:23,656
I was really, really sensitive to sounds.

112
00:10:23,689 --> 00:10:29,729
Even listening to recordings was
too much for me.

113
00:10:29,729 --> 00:10:32,932
I could only do a few minutes at a time.

114
00:10:32,932 --> 00:10:39,205
Maya, actually, she finished producing
the dance opera without me.

115
00:10:39,238 --> 00:10:42,642
She did use my music, and
I had written the libretto as well.

116
00:10:42,675 --> 00:10:45,745
But there was another musician involved,

117
00:10:45,778 --> 00:10:51,317
Eric Mith, I think his last name is.

118
00:10:51,350 --> 00:10:53,119
Blanking on that.

119
00:10:53,152 --> 00:10:56,322
And he had written some other music.

120
00:10:56,822 --> 00:11:00,159
That's called Fihi ma Fihi.
It is what it is.

121
00:11:00,192 --> 00:11:03,562
We're working with the poetry of Rumi.

122
00:11:03,596 --> 00:11:05,364
So that's online.

123
00:11:05,398 --> 00:11:06,732
That dance opera.

124
00:11:06,732 --> 00:11:12,004
But I wasn't able to perform,
obviously, because I was stuck at home.

125
00:11:12,204 --> 00:11:15,741
So again, that drive to create

126
00:11:15,775 --> 00:11:20,613
got me, but I couldn't do much.

127
00:11:20,613 --> 00:11:26,719
Like I said, even writing
was an issue because of brain fog.

128
00:11:27,053 --> 00:11:33,392
I was watching a lot of period dramas
because they're relaxing.

129
00:11:33,426 --> 00:11:40,099
In this one period drama, this doctor
told this woman to take to her bed

130
00:11:40,132 --> 00:11:44,203
and work on her embroidery,
which I know is supposed to be insulting,

131
00:11:44,236 --> 00:11:47,606
but I was like, I'm in bed.

132
00:11:47,673 --> 00:11:50,843
I know some basic embroidery

133
00:11:50,843 --> 00:11:56,348
from doing some Ukrainian 
cross-stitch in high school.

134
00:11:56,348 --> 00:12:05,391
And so I called my mom because 
I knew she still had the materials.

135
00:12:05,725 --> 00:12:08,627
She brought me over a hoop and

136
00:12:08,627 --> 00:12:13,399
some thread, and I started embordering,

137
00:12:13,432 --> 00:12:18,471
and I fell in love with it.

138
00:12:18,504 --> 00:12:22,741
Absolutely fell in love with it
because it was something I could do,

139
00:12:22,775 --> 00:12:26,212
and it was restful, and it was slow.

140
00:12:26,212 --> 00:12:29,415
And aside from setting up the pieces,

141
00:12:29,448 --> 00:12:34,353
it doesn't take much energy, and I would

142
00:12:34,353 --> 00:12:38,424
say it's actually restorative to me.

143
00:12:39,658 --> 00:12:43,763
But unlike most people,
I did not start with a pattern.

144
00:12:43,796 --> 00:12:50,469
Most embroidery patterns, people think of
flowers and words and things like that.

145
00:12:50,503 --> 00:12:54,273
I started with scientific diagrams.

146
00:12:54,273 --> 00:12:56,275
[Laughs.]

147
00:12:58,644 --> 00:13:02,848
So, a big thing that I forgot to mention

148
00:13:02,848 --> 00:13:08,120
throughout all this is I'm also a poet.

149
00:13:08,154 --> 00:13:12,291
I have a couple of books out.

150
00:13:13,225 --> 00:13:18,430
I had been writing about
science and anatomy.

151
00:13:18,464 --> 00:13:24,069
My mom's a physiologist, so
I grew up around anatomy and physiology.

152
00:13:24,103 --> 00:13:26,438
I started embroidery these 

153
00:13:26,438 --> 00:13:29,375
text-image pieces I had made where

154
00:13:29,375 --> 00:13:34,747
I was relabeling scientific diagrams with poetry.

155
00:13:36,882 --> 00:13:39,785
That's where I started
with the embroidery.

156
00:13:39,818 --> 00:13:46,692
Then at some point, I was meditating.

157
00:13:46,692 --> 00:13:52,498
I'm a long-time meditator,
and I was very symptomatic that day.

158
00:13:52,531 --> 00:13:57,469
Meditation helped me because 
I would dissect the symptoms

159
00:13:57,469 --> 00:14:01,941
so they would be less overwhelming.

160
00:14:02,041 --> 00:14:06,178
I was tingling all over my body and

161
00:14:06,178 --> 00:14:10,749
rapid heartbeat and all these things happening.

162
00:14:10,783 --> 00:14:17,022
I started to see my sensations
as embroidery stitches.

163
00:14:17,590 --> 00:14:25,064
That led me to my symptomatology series
where I embroider all my symptoms.

164
00:14:27,833 --> 00:14:29,401
They're invisible.

165
00:14:29,435 --> 00:14:30,736
I look fine.

166
00:14:30,769 --> 00:14:33,539
I have an invisible disability.

167
00:14:34,106 --> 00:14:37,710
But the symptoms of ME/CFS,

168
00:14:37,743 --> 00:14:41,313
which is a post-viral ME/CFS,

169
00:14:41,347 --> 00:14:47,953
that's myalgic encephalomyelitis,
also known as chronic fatigue syndrome.

170
00:14:49,121 --> 00:14:51,657
They're quite overwhelming.

171
00:14:52,892 --> 00:14:55,961
I have improved a lot.

172
00:14:55,995 --> 00:14:57,830
ME/CFS is on a spectrum.

173
00:14:57,830 --> 00:15:03,836
There's extremely severe where people need
feeding tubes and they can't

174
00:15:03,869 --> 00:15:09,008
handle light or sound or anything,
and they can't move because

175
00:15:09,008 --> 00:15:14,146
it takes too much energy to do anything,

176
00:15:14,546 --> 00:15:17,016
all the way up to mild,

177
00:15:17,049 --> 00:15:19,385
where people can work part-time and 

178
00:15:19,385 --> 00:15:22,388
leave their houses. 

179
00:15:22,388 --> 00:15:25,224
I'm more moderate,

180
00:15:26,792 --> 00:15:32,865
so I would consider myself in the mild
form as long as I don't leave my house.

181
00:15:32,898 --> 00:15:36,235
I can pace myself carefully.

182
00:15:36,735 --> 00:15:41,941
But if I leave the house,
I'm definitely in the moderate

183
00:15:42,808 --> 00:15:45,611
area because
then I can't do anything 

184
00:15:45,611 --> 00:15:49,682
for the rest of the day and sometimes 
a couple of days after because

185
00:15:49,715 --> 00:15:53,986
I just exhausted exhausted myself from
leaving the house, even being

186
00:15:53,986 --> 00:15:56,722
pushed around in a transport chair.

187
00:15:56,755 --> 00:15:58,090
I can't.

188
00:15:58,090 --> 00:15:59,892
It's too much.

189
00:16:02,161 --> 00:16:04,263
That's what I was going to say.
I have improved.

190
00:16:04,296 --> 00:16:10,869
I was more on the severe spectrum,
not extremely severe, but more severe.

191
00:16:10,903 --> 00:16:18,410
At one point, I shaved my head
because washing was too exhausting.

192
00:16:19,011 --> 00:16:24,483
But now I can wash myself and make
simple meals and things like that.

193
00:16:24,516 --> 00:16:30,022
I've added music back into it,
but slightly differently.

194
00:16:30,456 --> 00:16:32,658
I can't sing.

195
00:16:32,691 --> 00:16:36,362
It's too exhausting
to sing, though I started doing

196
00:16:36,395 --> 00:16:42,768
some really simple vocal warmups
for five minutes every couple of weeks,

197
00:16:42,768 --> 00:16:46,338
but I'm able to play the piano again.

198
00:16:46,372 --> 00:16:53,212
Most days, 10 to 15 minutes
at a time, and that's about it.

199
00:16:53,212 --> 00:16:55,547
I've been improvising.

200
00:16:55,581 --> 00:16:59,651
I'm finding writing music is too much

201
00:16:59,685 --> 00:17:06,258
of a cognitive issue, like translating

202
00:17:06,291 --> 00:17:11,997
the music into a score takes too...

203
00:17:12,030 --> 00:17:18,270
There's some disconnect there now where
it used to be very, very easy for me.

204
00:17:18,303 --> 00:17:22,741
But I can improvise. I can make up 
music on the fly and record it.

205
00:17:22,775 --> 00:17:28,580
So that's been my focus with my music.

206
00:17:28,614 --> 00:17:32,818
And broidery and music, and I am writing

207
00:17:32,851 --> 00:17:37,523
some poetry and some essays.

208
00:17:40,325 --> 00:17:45,964
That's my very long
and complicated background.

209
00:17:46,265 --> 00:17:49,334
I want to ask about the poetry.

210
00:17:49,368 --> 00:17:53,639
Did you start working on poetry 
before you got sick,

211
00:17:53,672 --> 00:17:58,977
or did it come with this

212
00:17:58,977 --> 00:18:02,681
moment where you wanted to go back to the arts?

213
00:18:03,082 --> 00:18:07,019
No, I've always written poetry

214
00:18:08,353 --> 00:18:13,959
My first book was published in 2003.

215
00:18:13,992 --> 00:18:16,562
Oh, no, there was one before that.

216
00:18:16,595 --> 00:18:21,333
Maybe in the 1990s,
I had a chapbook published.

217
00:18:21,366 --> 00:18:24,303
Yeah, I've always written poetry.

218
00:18:24,336 --> 00:18:30,742
My uncle was a poet,
and he was a sound poet.

219
00:18:30,776 --> 00:18:34,713
My uncle, through marriage, I shouldn't
say that, my uncle, through marriage,

220
00:18:34,746 --> 00:18:37,082
he married my dad's sister, 

221
00:18:37,082 --> 00:18:44,823
was bpNichol, who was a sound poet
and another poet.

222
00:18:45,257 --> 00:18:47,793
He was very influential on me.

223
00:18:47,826 --> 00:18:52,831
In fact, he was the one who mentioned
York University as a good place for me to go

224
00:18:52,865 --> 00:18:58,403
because we had collaborated with some of
the music professors there at the time.

225
00:18:58,403 --> 00:19:03,242
He really mentored me with my poetry.

226
00:19:03,275 --> 00:19:06,245
He died while I was a teenager.

227
00:19:06,278 --> 00:19:08,580
But yeah, I've always written.

228
00:19:08,614 --> 00:19:16,288
I've always written poetry
and libretto and scripts.

229
00:19:16,288 --> 00:19:21,193
At York University,
you did some...

230
00:19:21,193 --> 00:19:25,097
At York, you studied some improvisation, right?

231
00:19:25,130 --> 00:19:26,365
Yes.

232
00:19:26,498 --> 00:19:29,201
So people like Casey Sokol,
for example, right?

233
00:19:29,234 --> 00:19:30,602
Yes.

234
00:19:30,936 --> 00:19:32,838
He's amazing.

235
00:19:32,871 --> 00:19:34,573
Casey is great.

236
00:19:35,140 --> 00:19:37,342
Most people don't realize that

237
00:19:37,376 --> 00:19:42,181
there are improvisatory techniques.

238
00:19:42,214 --> 00:19:46,251
There's a different style,
there's different ways to do it,

239
00:19:46,285 --> 00:19:49,321
there's different things to think about.

240
00:19:49,788 --> 00:19:55,160
I would say my improvisations now
are more melodic and more like

241
00:19:55,160 --> 00:19:58,664
what I would call spontaneous composition.

242
00:19:59,097 --> 00:20:02,367
I'll come up with a theme and
return to it again and again

243
00:20:02,367 --> 00:20:05,871
throughout the improvisation, things like that.

244
00:20:05,904 --> 00:20:11,710
My improvisations are more chill
than they used to be, mostly because

245
00:20:11,710 --> 00:20:18,584
I want to stay calm while I'm playing,
so I don't overextend myself.

246
00:20:18,617 --> 00:20:24,222
But I used to be into
really experimental wild stuff.

247
00:20:24,256 --> 00:20:27,125
The wilder, the better.

248
00:20:28,026 --> 00:20:33,632
There's a big range in what
you can do through improvisation,

249
00:20:33,665 --> 00:20:37,469
but I love improvising.

250
00:20:37,736 --> 00:20:42,808
How did the evolution of your life

251
00:20:42,808 --> 00:20:48,847
with being sick and feeling the need to

252
00:20:49,181 --> 00:20:52,718
find other ways to create your art,

253
00:20:52,751 --> 00:20:59,091
how did it... I guess your style evolved with that.

254
00:20:59,091 --> 00:21:01,193
How did it impact it?

255
00:21:02,294 --> 00:21:07,165
Oh, that's an excellent question.

256
00:21:07,799 --> 00:21:11,703
I mean, the big...

257
00:21:11,703 --> 00:21:15,307
I think the big sort of 

258
00:21:15,307 --> 00:21:17,175
shift

259
00:21:17,175 --> 00:21:20,612
was the susurrations videopoem that I mentioned 

260
00:21:20,612 --> 00:21:25,150
about the heart where I...

261
00:21:25,183 --> 00:21:30,789
I mean, I had done a lot
of yoga and meditation and stuff.

262
00:21:31,089 --> 00:21:37,663
Like I said, the Roy Hart work is very
physical and psychological and full body.

263
00:21:39,431 --> 00:21:46,705
But it made me look at my body as

264
00:21:46,705 --> 00:21:51,977
both instrument and inspiration, I would say.

265
00:21:53,545 --> 00:21:59,818
So making art about my symptoms
started with that.

266
00:22:03,388 --> 00:22:07,059
And if it's very... 

267
00:22:07,059 --> 00:22:10,462
I remember once talking with

268
00:22:10,462 --> 00:22:12,531
a psychotherapist, and she's like,

269
00:22:12,564 --> 00:22:17,602
I don't know if this is healthy
to use your symptoms to make art.

270
00:22:17,636 --> 00:22:25,444
I was like, No, it is probably
the healthiest thing I could be doing

271
00:22:25,477 --> 00:22:31,883
because it allows me
to both accept and deal with my symptoms.

272
00:22:32,050 --> 00:22:38,123
So a lot of my art involves
understanding the physiology

273
00:22:38,156 --> 00:22:43,662
behind my symptoms, understanding
my own anatomy and how it's working

274
00:22:43,695 --> 00:22:46,798
or not working, what's going on with it.

275
00:22:46,832 --> 00:22:51,636
And I do think a big part of being someone
with a chronic illness is accepting

276
00:22:51,670 --> 00:22:54,005
your limitations, especially

277
00:22:54,039 --> 00:22:58,810
with ME/CFS, because you're so limited.

278
00:22:58,844 --> 00:23:02,147
If you overextend cognitively

279
00:23:02,180 --> 00:23:05,484
or physically or even emotionally,

280
00:23:05,484 --> 00:23:13,392
you get what's called post-exertional malaise
or PEM, as we call it.

281
00:23:13,425 --> 00:23:14,893
You basically...

282
00:23:14,926 --> 00:23:19,431
I mean, you feel like you have 
the flu all the time, but 

283
00:23:19,431 --> 00:23:25,070
you feel like you have a really bad flu
if you get PEM, if you exert yourself.

284
00:23:25,103 --> 00:23:31,610
So accepting your limitations and

285
00:23:31,610 --> 00:23:36,581
living within those constraints

286
00:23:37,682 --> 00:23:42,721
can actually be very freeing in a way.

287
00:23:42,754 --> 00:23:47,325
I know a lot of artists and writers
and musicians even talk about using

288
00:23:47,359 --> 00:23:53,665
constraint as an artistic guide, I guess.

289
00:23:53,698 --> 00:23:57,202
I've taken that to heart.

290
00:23:57,235 --> 00:24:02,808
Constraint equals freedom in some ways,
both with chronic illness

291
00:24:02,841 --> 00:24:06,344
and with art, I would say.

292
00:24:07,179 --> 00:24:09,314
Did I answer your question?

293
00:24:09,347 --> 00:24:13,018
I wandered all over the place.

294
00:24:13,485 --> 00:24:14,386
No, it's great.

295
00:24:14,386 --> 00:24:20,792
I love the idea of, of course,
it's important to recognize

296
00:24:20,826 --> 00:24:25,964
in what state of mind and of body
you are when you create art.

297
00:24:25,997 --> 00:24:30,502
I don't think there is anything wrong in

298
00:24:31,069 --> 00:24:33,104
using the reality of whatever

299
00:24:33,138 --> 00:24:37,142
the situation is to be part of that.

300
00:24:38,310 --> 00:24:39,578
Yes.

301
00:24:39,778 --> 00:24:43,849
One thing that's happened with
some of my symptomatology embroideries

302
00:24:43,849 --> 00:24:48,053
is people have taken screenshots
of them to their doctors to help explain

303
00:24:48,053 --> 00:24:53,925
their symptoms, which I'm just like, wow,

304
00:24:53,992 --> 00:24:56,761
it's like, oh, my God, I'm tearing up.

305
00:24:56,795 --> 00:25:03,802
That is so amazing because it's easier

306
00:25:03,835 --> 00:25:06,505
for them to just say, Oh, here

307
00:25:06,538 --> 00:25:13,812
is where I'm tingling on my body,
exactly like this woman who is tingling.

308
00:25:14,179 --> 00:25:18,717
It really surprised me when I started sharing 
my symptomatology embroideries online, 

309
00:25:18,717 --> 00:25:24,189
how many people were Oh,
my God, that's exactly how I feel.

310
00:25:24,256 --> 00:25:28,527
Because I thought I was doing
self-portraits, but people

311
00:25:28,527 --> 00:25:33,265
with the same symptoms were like, This
is how I feel, which is incredible.

312
00:25:33,298 --> 00:25:36,468
I mean, it blows my mind still.

313
00:25:37,135 --> 00:25:40,372
Can you tell me more about
these embroideries that you're making?

314
00:25:40,372 --> 00:25:43,174
What is the process?

315
00:25:43,441 --> 00:25:47,012
You told me that it really came from the

316
00:25:47,045 --> 00:25:51,049
fact that your mom is also a scientist?

317
00:25:51,082 --> 00:25:53,318
Yeah, she's a physiologist.

318
00:25:53,351 --> 00:25:54,252
Oh, physiologist.

319
00:25:54,286 --> 00:26:00,091
You grew up with these
imageries of bodies.

320
00:26:00,525 --> 00:26:03,461
Now you have your own body.

321
00:26:03,495 --> 00:26:11,069
How do you connect that, these two parts
of your life in embroidering?

322
00:26:11,970 --> 00:26:19,044
Well, I have a whole
shelf of anatomy books.

323
00:26:19,077 --> 00:26:22,681
Actually, It's funny.

324
00:26:22,681 --> 00:26:26,351
My mom loves my embroidery.

325
00:26:26,384 --> 00:26:27,786
She's retired now.

326
00:26:27,786 --> 00:26:31,289
But for my birthday every year, 

327
00:26:31,289 --> 00:26:35,493
I give her a list of anatomy art books, 

328
00:26:35,493 --> 00:26:40,231
and she'll buy me one for my birthday every year.

329
00:26:40,265 --> 00:26:43,902
I have this great
collection of anatomy books.

330
00:26:43,935 --> 00:26:50,642
Some of them are medical textbooks, but
some of them are historical anatomy art.

331
00:26:51,710 --> 00:26:57,349
When I'm about to make a piece,
I'll usually focus on

332
00:26:57,382 --> 00:26:59,918
wherever I am symptomatic.

333
00:26:59,951 --> 00:27:05,290
If I'm thinking about my tingling,
I'll work on a piece about tingling.

334
00:27:05,323 --> 00:27:08,393
If I'm thinking about my liver,
I have some liver issues,

335
00:27:08,426 --> 00:27:10,695
I'll investigate the liver.

336
00:27:10,729 --> 00:27:17,068
I'll look through my anatomy books
and find, usually, a historical engraving

337
00:27:17,102 --> 00:27:20,605
to base the piece around.

338
00:27:20,605 --> 00:27:24,075
So I've also traced my body parts.

339
00:27:24,109 --> 00:27:28,013
I have a series of hands
where I've traced my hand.

340
00:27:29,781 --> 00:27:36,588
And then I'll do a bit of research so I
understand how everything works together.

341
00:27:36,621 --> 00:27:43,395
And I'll stitch the base image,

342
00:27:43,428 --> 00:27:46,598
so based on the historical engraving.

343
00:27:46,631 --> 00:27:49,901
And then I'll do
the symptomatology stuff on top.

344
00:27:49,934 --> 00:27:52,837
And that's I've usually done freehand.

345
00:27:52,871 --> 00:27:56,141
I don't plan much of it out.

346
00:27:56,174 --> 00:28:00,812
I really go inside my body
and it's like, What am I feeling?

347
00:28:00,812 --> 00:28:04,549
And stitch those sensations.

348
00:28:05,483 --> 00:28:10,088
Sometimes I'll work
off my medical imaging.

349
00:28:10,088 --> 00:28:15,026
Unfortunately, in Saskatchewan, it's
very hard to get the actual images of

350
00:28:15,026 --> 00:28:20,932
your medical imaging, but I will always ask, 

351
00:28:20,932 --> 00:28:25,670
and often the radiologist or whoever

352
00:28:25,670 --> 00:28:28,606
will show me the images on the screen.

353
00:28:28,606 --> 00:28:32,977
And then when I get home,
I sketch it out really fast.

354
00:28:34,446 --> 00:28:38,049
So, yeah, there's different stages.

355
00:28:38,083 --> 00:28:42,754
Some of the symptomatology stories
are more abstract.

356
00:28:42,787 --> 00:28:46,491
There's one about fatigue
called neurasthenia.

357
00:28:46,491 --> 00:28:47,892
That's more abstract.

358
00:28:47,926 --> 00:28:51,830
Some of them are very, very visceral
and very medical-looking.

359
00:28:51,830 --> 00:28:56,968
I have one called Bleeding
Vessel, which is of my uterus.

360
00:28:56,968 --> 00:29:03,007
I took the measurements
of my fibroids, beated that on.

361
00:29:03,007 --> 00:29:06,711
I was diagnosed with very,
very early stage endometrial cancer

362
00:29:06,711 --> 00:29:10,348
and beated that on.

363
00:29:10,582 --> 00:29:14,519
I actually finished that piece while
I was recovering from my hysterectomy.

364
00:29:14,552 --> 00:29:24,129
I show my pieces to my doctors as well.

365
00:29:24,262 --> 00:29:28,333
Sometimes, I know when I was
dealing with some liver stuff,

366
00:29:28,333 --> 00:29:34,072
I was working on my liver piece,
and I met with this surgeon, and I said,

367
00:29:34,105 --> 00:29:39,878
I haven't seen my imaging, but you have,
where are the structures in my biodex?

368
00:29:39,911 --> 00:29:42,046
Can you point them out on this embroidery?

369
00:29:42,080 --> 00:29:44,382
And he was like, It's amazing.

370
00:29:44,415 --> 00:29:46,184
This is great.

371
00:29:47,552 --> 00:29:53,424
So I often start a deeper conversation 

372
00:29:53,458 --> 00:29:56,628
with my doctors because they understand that

373
00:29:56,661 --> 00:30:01,799
I understand enough of the physiology
and enough of the medical terminology

374
00:30:01,833 --> 00:30:09,607
that there's more communication
between me and my doctors.

375
00:30:11,543 --> 00:30:18,183
It's a whole process, and a lot -
my pieces keep getting bigger and bigger.

376
00:30:18,216 --> 00:30:23,221
Actually, this one I just recently
finished, but it still needs to be 

377
00:30:23,221 --> 00:30:25,023
washed some more and ironed.

378
00:30:25,056 --> 00:30:28,193
This is probably my biggest piece to date.

379
00:30:28,393 --> 00:30:31,362
This is a vagus nerve.

380
00:30:31,396 --> 00:30:36,301
I'm just going to scroll
it up because it's so big.

381
00:30:38,403 --> 00:30:42,073
The blue is from an engraving,

382
00:30:42,106 --> 00:30:48,012
and all the colors are symptomatology.

383
00:30:48,713 --> 00:30:51,316
Wow, it took about one year?

384
00:30:51,349 --> 00:30:56,588
About a year.
Because embroidery is slow.

385
00:30:56,621 --> 00:30:57,522
Yes.

386
00:30:57,555 --> 00:31:01,226
Which is part of also
your process of creating, right?

387
00:31:01,226 --> 00:31:05,063
It's something that you
can do in your rhythm.

388
00:31:05,730 --> 00:31:06,764
Yeah.

389
00:31:06,798 --> 00:31:08,933
It's something I can do reclining.

390
00:31:08,967 --> 00:31:13,304
I mean, right now I'm reclining back
in my studio.

391
00:31:13,338 --> 00:31:15,907
I have a chaise longue.

392
00:31:15,940 --> 00:31:18,076
So my legs are stretched out.

393
00:31:18,109 --> 00:31:25,350
I can lean back and I'll I just hold my
embroidery hoop and sit here and stitch.

394
00:31:25,383 --> 00:31:26,985
It's like I'm sitting up in bed.

395
00:31:27,018 --> 00:31:30,421
It's very relaxing.

396
00:31:30,455 --> 00:31:33,524
For those in the podcast, we just saw -

397
00:31:33,524 --> 00:31:37,562
it's a long piece of embroidery, right?

398
00:31:37,595 --> 00:31:39,430
It's a long piece of fabric.

399
00:31:39,464 --> 00:31:45,270
It's green, and the embroidery
is blue and yellow, right?

400
00:31:45,370 --> 00:31:49,340
Yeah, there's mostly blue and yellow 
embroidery. There's some red.

401
00:31:49,340 --> 00:31:56,347
There's a red heart, and in the abdomen area,
there's a bunch of burgundy stitching.

402
00:31:57,382 --> 00:31:58,816
Very nice.

403
00:31:59,183 --> 00:32:02,153
Okay, thank you for that part.

404
00:32:02,153 --> 00:32:05,790
I want to switch to the other part
now, which is the music,

405
00:32:05,823 --> 00:32:08,293
which is coming back to the piano.

406
00:32:08,293 --> 00:32:14,065
When did you come back and what happened
exactly to give you the energy and

407
00:32:14,065 --> 00:32:16,934
the confidence to go back to your piano?

408
00:32:17,902 --> 00:32:25,610
One of the symptoms that is really 
common in ME/CFS is hyperacusis.

409
00:32:25,610 --> 00:32:30,315
That means you hear 
too much, which is

410
00:32:30,315 --> 00:32:34,552
probably the worst symptom for a musician.

411
00:32:35,420 --> 00:32:39,190
But it's not just
that sounds are too loud.

412
00:32:39,223 --> 00:32:42,527
It's like you can't
differentiate between sounds.

413
00:32:42,560 --> 00:32:46,397
They become all muddied together.

414
00:32:46,964 --> 00:32:49,467
And there's also a pain component to it, 

415
00:32:49,467 --> 00:32:52,837
but not necessarily pain in your ears.

416
00:32:52,870 --> 00:32:56,040
It can be pain throughout
your entire body.

417
00:32:56,607 --> 00:33:00,378
So I'm especially sensitive to low-pitched

418
00:33:00,411 --> 00:33:04,649
rumbling sounds like 
construction or lawn mowers, 

419
00:33:04,649 --> 00:33:06,851
those sorts of sounds.

420
00:33:06,884 --> 00:33:12,657
So if there's roadwork nearby,

421
00:33:12,690 --> 00:33:15,193
which has been happening lately,

422
00:33:15,226 --> 00:33:19,197
I'll use noise-canceling headphones.

423
00:33:19,230 --> 00:33:20,898
But sometimes that isn't enough.

424
00:33:20,932 --> 00:33:25,703
And the next day, my entire body

425
00:33:25,737 --> 00:33:29,107
will ache, and brain fog, can't think, 

426
00:33:29,107 --> 00:33:32,110
that sort of thing.

427
00:33:32,143 --> 00:33:35,947
So this was a very
disturbing symptom to me.

428
00:33:35,980 --> 00:33:38,449
So I did a bunch of research

429
00:33:38,449 --> 00:33:43,354
and went through this very long,

430
00:33:43,388 --> 00:33:47,992
month-long desensitization process.

431
00:33:48,026 --> 00:33:55,266
So that involved using pink
and brown noise, which are...

432
00:33:55,299 --> 00:33:56,601
Brown noise is like...

433
00:33:56,634 --> 00:34:01,672
It sounds like the rush
of a waterfall or ocean waves.

434
00:34:02,473 --> 00:34:06,811
It's fairly low-pitched, but complex,

435
00:34:06,811 --> 00:34:10,515
but it's also very relaxing
to the nervous system.

436
00:34:12,050 --> 00:34:18,990
I usually listen to nature sounds in
my studio, which is a hyperacusis trick

437
00:34:19,023 --> 00:34:24,896
because it masks sounds
that I'm sensitive to,

438
00:34:24,896 --> 00:34:28,433
but it also relaxes the nervous system.

439
00:34:29,600 --> 00:34:34,372
I very, very, very slowly listened to

440
00:34:34,372 --> 00:34:38,342
one minute of music on a speaker

441
00:34:38,376 --> 00:34:45,583
for weeks until that felt okay, and then
added a minute, and then added a minute.

442
00:34:45,616 --> 00:34:50,121
So very, very slowly got my body used to

443
00:34:50,154 --> 00:34:53,024
not not only hearing music in headphones

444
00:34:53,057 --> 00:34:58,229
or earbud, but in the air around me.

445
00:34:59,864 --> 00:35:04,869
I was also working with a doctor

446
00:35:04,869 --> 00:35:07,071
who knew about ME/CFS.

447
00:35:07,071 --> 00:35:11,742
It took about a year to get in
to see him, and he had supplements and

448
00:35:11,776 --> 00:35:16,581
dietary changes and other ideas to help

449
00:35:16,614 --> 00:35:20,485
improve my energy, and he really helped.

450
00:35:20,785 --> 00:35:26,624
And I'm on a medication that's usually

451
00:35:26,657 --> 00:35:30,628
used for alcohol addiction,

452
00:35:30,661 --> 00:35:36,400
but in a very low dose, it helps heal
the nervous system called Naltrexone.

453
00:35:36,434 --> 00:35:40,838
So I'm on low dose of Naltrexone,
and that was huge for me.

454
00:35:40,872 --> 00:35:44,375
That changed so much for me.

455
00:35:44,609 --> 00:35:50,114
And then I felt like I could
sit up at the piano for, again,

456
00:35:50,148 --> 00:35:52,950
one minute minute until that felt okay.

457
00:35:52,984 --> 00:35:55,253
Add a minute, add a minute, add a minute.

458
00:35:55,286 --> 00:35:59,891
So these are months long each stage.

459
00:36:00,992 --> 00:36:06,464
And now I can do 10 or
15 minutes at the piano.

460
00:36:06,497 --> 00:36:11,369
Though sometimes things happen
and I crash.

461
00:36:11,369 --> 00:36:15,506
I have a bad physical crash.

462
00:36:15,540 --> 00:36:19,744
So after my hysterectomy
or if I'm hospitalized

463
00:36:19,777 --> 00:36:26,184
because my liver has acted up, I'll sometimes
have to build myself up again,

464
00:36:26,217 --> 00:36:28,619
not necessarily from nothing anymore.

465
00:36:28,653 --> 00:36:33,291
I can start with five minutes
instead of one minute.

466
00:36:34,792 --> 00:36:37,762
But I've had to do that repeatedly,

467
00:36:37,762 --> 00:36:41,866
build myself up until 
I get to something that - 

468
00:36:43,167 --> 00:36:46,771
I've realized that even one minute is useful.

469
00:36:46,804 --> 00:36:53,544
When you miss something that much,
even one minute is like, Oh,

470
00:36:53,578 --> 00:36:55,213
I did it for one minute.

471
00:36:55,213 --> 00:36:56,714
It's amazing.

472
00:36:56,747 --> 00:36:59,784
How do you improvise for one minute?

473
00:36:59,817 --> 00:37:02,086
That's a very small constraint.

474
00:37:02,086 --> 00:37:05,623
Then you can come up
with some interesting things.

475
00:37:07,191 --> 00:37:11,162
It was a very, very slow process.

476
00:37:11,729 --> 00:37:15,233
But right now, it's good.

477
00:37:15,266 --> 00:37:21,372
Right now, I'm back for 15 minutes or so. Yeah.

478
00:37:22,306 --> 00:37:26,544
And I think you also have a release
that is coming up, right?

479
00:37:26,577 --> 00:37:28,312
Oh, that's right.

480
00:37:28,312 --> 00:37:30,314
[Laughs.]

481
00:37:32,049 --> 00:37:32,917
Yes.

482
00:37:32,950 --> 00:37:38,255
I released my first
recording since getting sick.

483
00:37:38,289 --> 00:37:40,925
It's called The Hum.

484
00:37:40,992 --> 00:37:47,932
It's actually based on the hyperacusus
symptoms I was talking about before.

485
00:37:48,532 --> 00:37:51,535
Not only am I sensitive to low pitch sounds,

486
00:37:51,535 --> 00:37:56,540
I hear this constant low pitched hum all the time.

487
00:37:56,540 --> 00:38:01,012
It's very quiet,
but it's there constantly.

488
00:38:02,146 --> 00:38:04,548
It's a D.

489
00:38:04,548 --> 00:38:08,085
It's a low D.

490
00:38:08,352 --> 00:38:12,023
I also have tinnitus, and that's an A.

491
00:38:12,056 --> 00:38:16,093
Thankfully, they work well together.

492
00:38:16,093 --> 00:38:21,365
The Hum, the piece The Hum.

493
00:38:21,365 --> 00:38:28,039
I have these low-pitched layer drones
on a D, and I have a piano line

494
00:38:28,072 --> 00:38:31,909
that's around an A that's quite high.

495
00:38:31,942 --> 00:38:35,313
So the hum masks

496
00:38:35,346 --> 00:38:40,751
my hyperacusus hum and my tinnitus.

497
00:38:41,986 --> 00:38:44,755
It's very relaxing.

498
00:38:44,789 --> 00:38:46,957
I've gotten some messages
from people saying, 

499
00:38:46,957 --> 00:38:49,593
I've added this to my meditation mix.

500
00:38:49,627 --> 00:38:53,464
I play this before before
I go to sleep at night.

501
00:38:54,031 --> 00:38:59,036
I composed it as therapeutic music,

502
00:38:59,036 --> 00:39:02,006
I guess you could say, for myself, but

503
00:39:02,039 --> 00:39:05,376
other people are feeling that as well.

504
00:39:05,843 --> 00:39:13,317
The editing took forever because
for some reason, music editing

505
00:39:13,351 --> 00:39:18,189
is very cognitively taxing

506
00:39:18,222 --> 00:39:21,092
for me, even though I like doing it.

507
00:39:21,092 --> 00:39:25,896
I can do 20 minutes and then I'm done.

508
00:39:26,063 --> 00:39:32,703
Getting a really organic
drone underneath the piano part.

509
00:39:32,737 --> 00:39:37,708
I think I've got four or five
different sounds, and I wanted them

510
00:39:37,708 --> 00:39:40,010
to cycle through each other.

511
00:39:40,010 --> 00:39:42,246
Getting that going took a fair bit

512
00:39:42,279 --> 00:39:47,618
of editing, but apparently, I got there,

513
00:39:47,651 --> 00:39:50,888
according to what the people were saying.

514
00:39:50,921 --> 00:39:56,694
I was very happy to be like,
Oh, I finished something.

515
00:39:56,727 --> 00:40:01,265
Wow.
It's about 10 minutes long.

516
00:40:01,365 --> 00:40:03,701
Yeah, The Hum.

517
00:40:04,068 --> 00:40:06,403
How long did it take to record it?

518
00:40:06,437 --> 00:40:08,405
Oh, months.

519
00:40:08,539 --> 00:40:10,674
I don't remember.

520
00:40:10,708 --> 00:40:14,445
Maybe, it's probably more than a year.

521
00:40:15,212 --> 00:40:18,349
Yeah, including the editing.

522
00:40:18,349 --> 00:40:24,722
The recording, I think I did the piano
because I wanted to be fairly specific

523
00:40:24,755 --> 00:40:28,092
about it, I did it
in a few different sessions.

524
00:40:28,092 --> 00:40:32,696
But that probably took about a month.

525
00:40:32,730 --> 00:40:36,767
Then, like I said, the editing of the drone 

526
00:40:36,767 --> 00:40:40,137
took a very long time, months and months.

527
00:40:40,704 --> 00:40:42,706
Well, congratulations.

528
00:40:42,873 --> 00:40:44,675
Thank you.

529
00:40:44,675 --> 00:40:49,480
I was very happy to finish it
and put it out into the world.

530
00:40:49,513 --> 00:40:53,517
Well, I will put all the links
to listen to it and to purchase it

531
00:40:53,551 --> 00:40:56,086
on ArtsAbly's website.  

532
00:40:56,086 --> 00:40:57,621
Thank you.

533
00:40:57,888 --> 00:41:03,928
Okay, I have a last question for you
before we end our conversation,

534
00:41:03,928 --> 00:41:09,900
which is about collaborations or
interesting people in your life 

535
00:41:09,900 --> 00:41:13,537
who might have inspired you 

536
00:41:13,537 --> 00:41:18,876
to do whatever you were doing today 
or how things turned in your life.

537
00:41:18,909 --> 00:41:22,213
If you had one or two people
to think of and to name, 

538
00:41:22,213 --> 00:41:24,882
who would it be and why?

539
00:41:24,982 --> 00:41:29,487
Well, I'm going to mention my husband

540
00:41:29,487 --> 00:41:34,225
because he is so supportive

541
00:41:34,325 --> 00:41:36,460
and so helpful.

542
00:41:36,494 --> 00:41:42,566
He makes my life easy enough

543
00:41:42,566 --> 00:41:45,436
that I can do my creative work.

544
00:41:45,469 --> 00:41:49,240
He's very 

545
00:41:49,240 --> 00:41:54,545
physically supportive
in terms of that.

546
00:41:55,246 --> 00:42:02,453
I mean, marriages often fall apart
when one partner gets ME/CFS because

547
00:42:02,453 --> 00:42:06,690
you're not the person you were before.

548
00:42:06,690 --> 00:42:10,227
But he's stuck by me.

549
00:42:10,261 --> 00:42:13,264
He's the cook in the family,
so I just have to assemble meals.

550
00:42:13,297 --> 00:42:16,700
I don't have to cook things from scratch.

551
00:42:16,734 --> 00:42:21,005
If I need embroidery threads,
he'll either take me to shop

552
00:42:21,038 --> 00:42:26,510
or I'll tell him which colors
I need and he'll pick them up for me.

553
00:42:26,543 --> 00:42:30,247
He's just really, really, really helpful.

554
00:42:30,281 --> 00:42:34,752
And he understands how important
it is for me to be creative,

555
00:42:34,785 --> 00:42:36,186
because when I'm not creative.

556
00:42:36,186 --> 00:42:39,890
I am a mess, psychologically.

557
00:42:39,890 --> 00:42:44,628
I get very depressed and
it's just very bad.

558
00:42:44,662 --> 00:42:47,598
And he knows this about me.

559
00:42:47,631 --> 00:42:53,570
We got married in our early 20s,
so we've been married for

560
00:42:53,604 --> 00:42:57,608
over 30 years now, so he gets me.

561
00:42:59,176 --> 00:43:05,182
Other creative people I've worked with,
I'm going to mention Opera Mariposa,

562
00:43:05,215 --> 00:43:08,352
which other people may have 
mentioned on the podcast,

563
00:43:08,385 --> 00:43:13,490
but what they're doing in terms of

564
00:43:15,059 --> 00:43:16,727
awareness campaigns,

565
00:43:16,760 --> 00:43:23,100
their May awareness campaign for ME/CFS
and fibromyalgia is incredible.

566
00:43:23,734 --> 00:43:27,304
It's like this little community
forms for a month, 

567
00:43:27,304 --> 00:43:30,240
and we share each other's work, 
and it's wonderful.

568
00:43:30,274 --> 00:43:35,279
It's not just opera artist, it's visual artists 

569
00:43:35,279 --> 00:43:39,717
and writers and art activists.

570
00:43:39,750 --> 00:43:46,623
They've really created a beautiful thing
with their May Awareness campaign.

571
00:43:46,657 --> 00:43:50,527
Yeah, and they're great to work with.

572
00:43:50,527 --> 00:43:55,032
Stephanie and Jacqueline Ko,
the sisters who run Opera Mariposa,

573
00:43:55,032 --> 00:43:59,470
they both have ME/CFS, so they get it.

574
00:43:59,503 --> 00:44:05,075
They give us lots of time
to get our work to them, and 

575
00:44:05,075 --> 00:44:09,146
they're just really wonderful to work with.

576
00:44:09,179 --> 00:44:15,486
I'm always in awe of Jacqueline's singing
because I can't sing, but I used to sing,

577
00:44:15,486 --> 00:44:22,059
but she's got this incredibly powerful
voice, and she must have

578
00:44:22,092 --> 00:44:26,063
an incredible pacing technique because...

579
00:44:26,096 --> 00:44:27,731
Wow.

580
00:44:29,233 --> 00:44:32,536
I've also met through them,
Christina Baltais, 

581
00:44:32,536 --> 00:44:37,508
who's a Toronto artist, visual artist.
She does collage work.

582
00:44:37,541 --> 00:44:43,313
She has ME/CFS,
and she does gorgeous collages.

583
00:44:43,347 --> 00:44:48,052
A lot of it about her symptoms, not all of
it, but a lot of it about her symptoms.

584
00:44:48,085 --> 00:44:52,122
Really powerful, beautiful work.

585
00:44:54,291 --> 00:44:58,862
And I think if there is anyone else.

586
00:45:00,297 --> 00:45:06,737
I mean, there's so many
fiber artists online

587
00:45:07,071 --> 00:45:11,208
that I love and have connected with.

588
00:45:11,575 --> 00:45:16,280
Laura Bundesen also does scientific

589
00:45:16,313 --> 00:45:20,717
emboideries, mostly about the brain.

590
00:45:20,751 --> 00:45:22,686
Just beautiful.

591
00:45:22,686 --> 00:45:28,025
Very different from my work, but gorgeous.

592
00:45:28,058 --> 00:45:34,264
She's been great helping me figure out the
nuts and bolts of things like, 

593
00:45:34,264 --> 00:45:38,102
How much do you sell a piece of embroidery for?

594
00:45:38,135 --> 00:45:41,672
Because it takes you hours to do.

595
00:45:43,340 --> 00:45:46,376
She's been really helpful.

596
00:45:46,410 --> 00:45:52,049
There's a really great sci-art 
community on social media 

597
00:45:52,049 --> 00:45:55,252
who has been really supportive of my work.

598
00:45:55,252 --> 00:45:58,388
Glendon Mellow is the guy
who started all that.

599
00:45:58,422 --> 00:46:00,290
He's in Toronto.

600
00:46:02,326 --> 00:46:08,432
Yeah, so lots of people,
not all disability-related.

601
00:46:08,766 --> 00:46:14,104
But yeah, any art gets
done in a community.

602
00:46:14,138 --> 00:46:15,906
Yeah.
Thank you so much.

603
00:46:15,939 --> 00:46:21,345
I was wondering, are you
exhibiting your embroideries?

604
00:46:22,813 --> 00:46:27,651
Mostly online, to tell the truth.

605
00:46:27,651 --> 00:46:32,789
I am trying to figure out if I have
the energy to frame them myself

606
00:46:32,856 --> 00:46:36,426
or if I need to shop that out.

607
00:46:36,460 --> 00:46:39,596
So I've gotten the basic materials

608
00:46:39,630 --> 00:46:44,568
to stretch my embroideries on map board,

609
00:46:44,568 --> 00:46:50,607
but I haven't gotten to the point
of actually trying that out yet.

610
00:46:50,607 --> 00:46:55,112
So I do have one piece in the Saskatchewan
Arts Board Permanent Collection

611
00:46:55,145 --> 00:46:56,880
but they took care of the framing.

612
00:46:56,914 --> 00:47:00,150
So that was awesome.

613
00:47:00,184 --> 00:47:04,288
So that piece gets rented
out as part of their art bank.

614
00:47:04,288 --> 00:47:08,158
So it might be up somewhere right now.

615
00:47:09,726 --> 00:47:14,498
But mostly online, just because of the framing thing,

616
00:47:14,498 --> 00:47:20,204
this is still a hump I need to get over.

617
00:47:21,538 --> 00:47:24,208
My husband was a visual artist.

618
00:47:24,208 --> 00:47:28,545
He's taken a break from that,
so he knows what's involved.

619
00:47:28,579 --> 00:47:30,514
So he is going to help me,

620
00:47:30,547 --> 00:47:37,221
but I need to just get over that hump.

621
00:47:37,321 --> 00:47:42,025
So I do share my work online a lot,

622
00:47:42,059 --> 00:47:45,195
and there's some online galleries

623
00:47:45,229 --> 00:47:48,031
of my work in various places.

624
00:47:48,065 --> 00:47:52,236
I did have a bunch of pieces
published in a recent anthology

625
00:47:52,269 --> 00:47:54,004
called Sharp Notions.

626
00:47:54,037 --> 00:47:58,742
Actually, one of my embroideries
is on the cover, a lung embroidery.

627
00:47:58,775 --> 00:48:03,413
It's an anthology about stitching,

628
00:48:03,413 --> 00:48:06,884
about fiber arts, knitting, all that stuff.

629
00:48:06,917 --> 00:48:12,589
Great essays, really beautiful essays,
published by Arsenal Pulp Press

630
00:48:12,623 --> 00:48:14,324
in Vancouver.

631
00:48:14,591 --> 00:48:19,997
There's a bunch of embroideries
and an essay about my embroidery

632
00:48:20,030 --> 00:48:22,499
written by me in there.

633
00:48:23,133 --> 00:48:26,103
I would like to show and sell

634
00:48:26,136 --> 00:48:32,242
my work, but it's hard to...

635
00:48:33,510 --> 00:48:39,149
Knowing what's involved in
sending work out into the world,

636
00:48:39,182 --> 00:48:43,553
like physically, it's a lot.

637
00:48:43,587 --> 00:48:48,892
It's a lot of physical labor,

638
00:48:48,892 --> 00:48:52,529
let alone cognitive labor.

639
00:48:52,529 --> 00:48:56,233
It seems like a lot.

640
00:48:56,266 --> 00:48:57,968
I haven't quite got there yet.

641
00:48:57,968 --> 00:49:01,338
Digital world, awesome.

642
00:49:02,039 --> 00:49:03,640
Thank you.

643
00:49:03,674 --> 00:49:07,811
Okay, thank you so much for this conversation.
It was really interesting.

644
00:49:08,378 --> 00:49:09,413
Thank you.

645
00:49:09,613 --> 00:49:13,450
All the best for all your
projects and everything.

646
00:49:13,450 --> 00:49:14,484
Thank you.

647
00:49:14,518 --> 00:49:18,021
Thank you for asking me
to participate here.

648
00:49:18,055 --> 00:49:23,727
Have a great day and talk to you soon
about future projects.

649
00:49:23,827 --> 00:49:25,062
Yes.

650
00:49:25,462 --> 00:49:27,931
Okay. Bye.
Take care.

651
00:49:27,931 --> 00:49:29,466
Bye.

652
00:49:30,434 --> 00:49:35,572
[Closing theme music]