Rika's interview
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How did all start?
I woke up one day, and my vision was all blurry. I couldn’t see!
Do you already have a diagnosis? How long did it take you to get it?
I went to an eye care emergency clinic. They were very thorough, and had diagnosed me with Sarcoidosis within a week or so.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Oh boy... respirology, ophthalmology, neurology, physical therapy, rheumatology, uveitis expert in ophthalmology, endocrinologist, gastroenterology, nutritionist, counselling, nerve conduction studies expert, immunologist, general practitioner. My family Dr has been the most helpful. He’s the only one willing to look at ‘the big picture’.
What has been the most useful thing for you so far?
Knowledge and understanding about what I’m experiencing.
What have been your biggest difficulties?
Losing much of my abilities, to go out, to work, to spend time with friends, to contribute.my
How has your social and family environment reacted? Have your social or family relationships changed?
My friends live all over the world. I haven’t seen any since I got sick. I also haven’t reconnected with many friends from earlier in my life, people who are just down the street. People who know me react with shock when they see how I look, the weight I’ve gained, the size of my moon face, my once regular sized frame doubled in size. I hid away like a hermit for the first few years, watching the goings on on Facebook, but not participating. I’ve started reaching out some, but slowly...
What things have you stopped doing?
I’m unwell, so I don’t go out like I used to. I don’t make work (I’m an artist); I don’t hike, camp or kayak. I’m on provincial disability so I have no money to do things. I can’t afford to insure my van, and I’m profoundly tired after walking a few blocks, so I don’t go far with my dog. I go further on the bus, but usually to medical appointments, because I run out of energy if I do more than one thing in a day. I have a lot more energy in my minds eye, but have started to learn that what I think I can do and what I can do are not necessarily the same. I don’t shop, I don’t wander, I haven’t been outside to see the leaves falling, or to listen to the geese train in Ing their babies for their long flight.
What do you think about the future?
I’m hopeless. Despite the constant company of my much-loved cat & dog, I’m alone, unable to support myself or feel much hope. I worry that I’m on a long inevitable slide towards death and I’m ashamed of my lack of resiliency, that terrible feeling of helplessness that isolates me even more from the peop,e that love me, care for me, and would be there for me. ...that’s why I’m on a few waitlists for counselling. I’m not suicidal, but I am feeling pretty hopeless, purposeless, lost...
So far, which years have been the best years in your life? What have you done during them?
The best years of my life were in Philly, making art, running a studio, having an absolute blast with other artists while working on big projects that got us in the eye of our creative community. We were travelling to show our work, collaborating with amazing artists, and the very best part was the incredible creative energy between us. It was great.
What would you like to do if you didn’t have your condition?
Teach, make art, travel.
If you had to describe your life in a sentence, what would it be?
I’m resting, getting through a hard time that can’t be fought through, but through which I must be carried through.
Finally, what advice would you give to a person in a similar situation?
Pick up the phone, talk to your friends, call a counselor, call your mom.
