No Frida Kahlo situation:

Hel­lo, my name is Judith and I have been draw­ing from bed since 2021. I can­not use a wheel­chair or sit upright in my short cre­ative peri­ods. What start­ed out of neces­si­ty rather than nor­mal com­mu­ni­ca­tion (speak­ing or ther­a­py are not pos­si­ble) has devel­oped into a pas­sion over time, and peo­ple have used com­pli­ments like “mod­ern Fri­da Kahlo” and “tarot set-suit­able” when describ­ing my work. It also means a lot to me when peo­ple see them­selves in my work or just find it interesting.

So art and cre­ativ­i­ty, no mat­ter how small, have unde­ni­ably helped me on the one hand: even if it is just as an escapism, or, with a lot of help, par­tic­i­pa­tion in a life dif­fer­ent to the sick com­mu­ni­ty: it is some­thing that con­nects sev­er­al worlds and tries to cre­ate some­thing beau­ti­ful out of bad conditions.

And yet this is not a Fri­da Kahlo sit­u­a­tion, art is not a way of com­bat­ing pain, and its “pow­er” is lim­it­ed beyond the roman­ti­ciza­tion of artis­ti­cal­ly active sick peo­ple — espe­cial­ly for cer­tain ill­ness­es. It is impor­tant for me to say that, to con­vey it some­how, to make it understandable.

ME/CFS, espe­cial­ly in a severe pro­gres­sive form, is an ill­ness in which the clocks tick dif­fer­ent­ly. What can be a “flow”, a calm­ing activ­i­ty for oth­ers, is a marathon for those with severe ME/CFS, which is sub­se­quent­ly met with a dete­ri­o­ra­tion in con­di­tion. Even the act of cre­at­ing itself can cause more pain than it pre­vents. Let’s take that in for a moment, because it is typ­i­cal for ME/CFS, it is the world turned upside down, it goes against every­thing we’d actu­al­ly like to hear that’s encouraging.

I cre­at­ed the pic­tures shown here when the ruth­less loan shark of my ill­ness was a lit­tle gen­tler. When I did­n’t have to wait days to be able to make a sketch. When the act of draw­ing made me still for­get, the pas­sion was usu­al­ly stronger than the ill­ness. As the ill­ness pro­gress­es, this enthu­si­asm also becomes a prob­lem. Because at the severe stage, ME/CFS does­n’t dif­fer­en­ti­ate between pos­i­tive and neg­a­tive stim­u­la­tion: every­thing has its price.

And so my cre­ative con­di­tions change every month: what used to be calm­ing is now a marathon at the high­est lev­el of stress. And that’s a huge dif­fer­ence, just like being able to tol­er­ate a look at the screen of a mobile phone or not.

This ill­ness, as a friend once said, feeds on ambi­tion like dia­betes feeds on sug­ar. And that also applies to ambi­tion in rela­tion to art.

But how can a cre­ative per­son stop think­ing at least in ideas? Where is the hope in all this, the sal­va­tion of beau­ti­ful art?

On the one hand, I am proud of every­thing that has already been, what still is, and what is to come. Every sin­gle pic­ture. On the oth­er hand, I think that there is hope that goes beyond one’s own life: and art will sur­vive this too.

Cre­ativ­i­ty has become a very broad term for me: on some days I am hap­py to be able to stick a stick­er on col­ored paper and not be 100% con­sumed by tor­ture. This “art” will hard­ly be per­ceived as such, and yet for me it is equal to, if not above, many oth­er works: the deci­sive fac­tor is always the feel­ing you have when you do it: to be briefly inspired and cre­ative in that moment.