While my skin does not show the sensitivity that it feels, it is something that has become a part of my daily life.
We all have sensitivities in one form or another, some are quite visible (like dermatographia), some are hidden (like autoimmune disorder symptoms). Liz Jackson is a blogger also living in New York City. And she has an autoimmune disorder called Idiopathic Neuropathy that causes strange sensations, sensitivities, and physical weakness. She blogs (on her site The Girl with the Purple Cane) about everything from her experiences and anecdotes, to current events and cooking in a slow cooker.
Liz and I met after an article in the Huffington Post was published about Skin Tome and my work. She reached out to me, first on Twitter, then via email. We’ve been writing back and forth ever since. I love how popular media can bring people together!
I asked Liz a few questions about her autoimmune condition, skin, and her J Crew cane campaign.
Ariana Page Russell (APR): Can you please tell me a little bit more about your condition? Symptoms, causes, etc?
Liz Jackson (LJ): My official diagnosis is an Idiopathic Neuropathy. It’s so complicated. Idiopathic means without a known cause. But my doctors and I are fairly certain of the cause. We just don’t know how to treat it. I have two types of neuropathy. I have a motor neuropathy which means I have weakness and paralysis in various parts of my body. The symptoms ebb and tide, so some days I’m very strong. Other days I’m a hot mess. The other symptom is a sensory neuropathy. This means I have unusual and strange sensations all over my body. One example of this is my feet. If you touch my feet with a normal touch or a strong touch, that feels normal to me. But if something grazes lightly over my feet it feels like I am being cut with a knife. This means I wear socks a lot. Anyway, this is why your art is so fascinating to me. There is no physical evidence of what I’m feeling. I suppose I see you as being on the other end of the continuum.
(APR): Ha, seriously! With dermatographia I get a huge welt with the lightest scratch. How has your condition inspired you?
(LJ): My unusual gait has opened my eyes to a world I never knew existed (or perhaps overlooked). I find that I am continuously inspired and challenged by the world of disability. I recently went to an event with others of varying levels of disability. When I arrived, the hosts were moving tables and chairs around to fit us all in.
At one point, someone walked away leaving a few chair-less spots at a table. It looked incomplete to me. And as I was speaking to someone in a wheelchair, I unknowingly displaced her from the table by filling the empty spaces with chairs. Design as I had previously known it has always overlooked the disability community. Even an idea as basic as a chair around each side of the table leaves out someone in a wheelchair. I am inspired, not to just remember to leave an empty spot, but to find ways to rewrite the rules… I now believe it’s not about removing a chair and leaving an empty spot, it’s about creating a spot.
That’s what I’m inspired by (and thinking about) today.
(APR): I love that, “creating a spot.” It’s such a positive way to think about including all types of people. How else does your gait open your eyes to the world?
(LJ): My partner Megan has owned a Jeep. His name is Johnny. There is this thing that Jeep owners do when they see another Jeep passing by… they do the Jeep wave. I always would wave in a really embarrassing fashion, because I thought the Jeep wave was lame. Megan would get so annoyed with me and it would crack me up. I didn’t get the sense of community Jeep owners have with one another.
I now realize that this happens in the disability community. When I see someone with a cane, on crutches, in a wheelchair, etc I look out for them. And they often do the same for me. On the subway, if I need my seat, I will ask someone else to stand so they have a place to sit. But often we just exchange looks. I never realized how many people do use canes in NYC. I can’t get from point a to point b without seeing at least one other cane user. The thing is, I never saw them before. I probably bumped in to a fair amount of them. Now, I’m the first person to give them a glance, give them a smile or just take a moment to sigh with them.
(APR): I am going to start looking out for people with canes now, because I don’t notice very many either. Can you please talk more about what happens to your skin?
(LJ): When I say my skin ‘flares up’ what I mean is my immune system gets confused and attacks my sensory neurons, seeing them as a foreign invader like a virus. That’s where the tiredness comes in, my body is constantly going through this process and I’m always struggling with that run down feeling that comes before you get sick.
But in regards to my skin, it’s very unpredictable how one part of my body will respond. The damage to the sensory neurons causes tingling on my tongue, sensitivity to light touch on my feet. I am very sensitive to tags, seams, wool, anything scratchy. When it first started happening, I would wonder why my skin feels so sensitive but when I look at it, it looks healthy and normal. Now I get that it can’t be seen.
Other skin sensations include burning, itching, ants crawling, hot water feels cold, cold water feels hot, twitching, tingling, and the one potentially permanent feeling… numbness. When the numbness first happened, I didn’t realize I was numb. I joked with my doctors that my skin felt like the skin of a goddess. My skin felt softer than baby skin. But once my neurologist started testing sharp sensations, we realized they were diminished. A pointed end of a pin now feels rounded. I can still feel the pin, just not that sharp prick. If I have an itch I want to scratch, I can’t achieve that feeling of relief that comes with the scratch, I can’t feel the sharpness of a scratch. Everything feels a little bit muted and it will probably continue on this course.
I also had a nerve biopsy and my nerves never regenerated like we had hoped they would. I wrote a post about it. I always try to find ways to explain the feelings I am having since they can’t be seen.
(APR): I like that–explaining feelings. That’s kind of what I do visually, like I’m making my feelings and emotions visible. Please tell me a bit more about your cane project with J Crew.
(LJ): There was literally a day when I suddenly needed the assistance of eyeglasses and a cane. I hadn’t needed either the day before. I learned very quickly that nobody questions my glasses (though I do get the occasional compliment on them, often by a fellow glasses wearer). But as soon as someone saw me with a cane (stranger or not) they would ask what happened or tell me to feel better. I started noticed that J. Crew (and other retailers) sold eyeglass frames. This made me curious about the stigma of other assistive devices when there is little to no stigma for eyeglasses. Glasses are often considered a fashion accessory.
(APR): And why J Crew? (I know you speak about this on your blog, but just so Skin Tome readers get a sense)
(LJ): J. Crew states on their website that their goal is to run their business with sensitivity to the world around them. And I believe they do a good job of this. They are good to their employees and they do a wide variety of charity work. But it has always been so easy to overlook disability when it comes to fashion and design. This has always been the case. And I want to show them that it’s happening everywhere, everyday. I want J. Crew to want to be the exception. I believe J. Crew is the only company out there that is cool enough to pull this off. Aware enough to make it fit. And large enough to have an impact. That’s why I chose them.
(APR): Would you like to design your own cane? What other medical items are you interested in?
(LJ): I am happy with my cane, it is part of my identity at this point. There is occasionally some confusion about my petition, people often think that I want J. Crew to manufacture a cane. I don’t. I want J. Crew to collaborate with a company (Sabi) that has worked very hard to display beauty and craftsmanship through disability design. I can’t do it better than Sabi, I’m not a designer. I’m a customer.
If YesJCrewCane is a success, my next goal will be to tackle the hearing aid market. I already have the idea in my head… but I only have the energy (and sanity) to do one thing at a time.
(APR): How do you treat your condition and take care of yourself?
(LJ): Since there is no treatment for an Idiopathic Neuropathy, I have to be very focused on the small things. When I have energy, I push my limits with yoga or on a bike. But when I’m run down I have to let myself crash. I don’t smoke, don’t drink, eat very healthy, drink lots of water. On days when my skin is bothering me, I can feel very agitated, but I’m learning to breathe through the frustration. The things I do to ease my disability are no different than the things everyone should do. It’s just that if I don’t do those things, I won’t be able to walk, I’ll get migraines, I’ll be uncomfortable.
Interesting note. My tongue tingles all the time. It drives me crazy. I read about something called ‘pulling’ on the internet and decided to give it a try. So I got the coconut oil out of the cabinet and swished it in my mouth for 20 minutes and spit it out. And the tingling stopped. So now I pull when my tongue is bothering me. I am a science minded person and I know there is no evidence about the benefits of pulling. I don’t know why it works. I do it for myself and I’m so happy I am able to offer myself some relief without drugs.
(APR): Oil pulling is all the rage lately! It seems to help my teeth stay white (I swish with coconut oil for 15 minutes in the morning before eating or drinking anything). I didn’t know it can help the tongue too. That’s great news! What do you do here in New York?
(LJ): I ride my bike (I feel able-bodied on a bike, so my bike is very freeing to me). I spend time with my partner and my pup. I watch a lot of baseball and go to as many games as possible. I love New York. What do you do?
(APR): I also love New York! I’m an artist and photographer doing freelance work, and I have an art studio in Brooklyn that I spend a lot of time in. Otherwise, I like to enjoy all the art New York has to offer, and I try to get out when I can too–like to the beach or hiking, things like that. Please tell me a little bit more about yourself.
(LJ): I’m a happy person who is working to create a life for myself. Who I was two years ago is a far cry from who I am now. I am often filled with optimism and joy and I wish for everyone to find this in their own lives. It’s worth the pain that it takes to find it. And I’ll hold onto it as long as possible and then I will search for it again.
(APR): Thanks Liz! You’re an inspiration ;’)
Images courtesy of Liz Jackson