{"id":1602048,"date":"2020-09-16T16:05:16","date_gmt":"2020-09-16T20:05:16","guid":{"rendered":"https:\/\/divine.ca\/?p=1602048"},"modified":"2020-09-16T16:57:07","modified_gmt":"2020-09-16T20:57:07","slug":"womeninspiringwomen-ardra-shephard-tripping-on-air-and-ms-advocate","status":"publish","type":"post","link":"https:\/\/divine.ca\/en\/womeninspiringwomen-ardra-shephard-tripping-on-air-and-ms-advocate\/","title":{"rendered":"#WomenInspiringWomen: Ardra Shephard, Tripping On Air and MS Advocate"},"content":{"rendered":"

MS is Canada\u2019s disease with 11 new cases diagnosed daily. Everybody knows somebody with MS, but only a small number can actually articulate what the disease is. Having a disease, in and of itself doesn\u2019t make someone inspiring.\u00a0 In fact, we put so much pressure on people with serious conditions to make it OK for us, that it can be challenging for them.\u00a0 We recently spoke with Ardra Shephard whose blog, Tripping On Air: My Trip Through Life With MS<\/a> recounts her highs and lows with the chronic illness. She is a leader in the MS Community and is also an acclaimed writer and Instagrammer.\u00a0 She was named one of the top MS bloggers \u201cin the universe\u201d by feedspot.com, and Yahoo Lifestyle reported that @ms_trippingonair<\/a> is the number one chronic illness account to follow on Instagram.<\/p>\n

Ardra\u2019s symptoms began with a pain in her right eye and a visit to a walk-in clinic 19 years ago.\u00a0 It was misdiagnosed as a migraine. Two weeks later, her vision blurred, she saw a neurologist and began her journey with MS. She was in her early twenties and just starting out in life.\u00a0 In that way, \u00a0she was a typical young adult.\u00a0 Getting diagnosed at such a young age threw a wrench into a life that she was just beginning to figure out.\u00a0 Then, suddenly, all of the hopes and possibilities for her future felt much more limited because she just needed to figure out how to cope and survive.<\/p>\n

We selected Ardra as our latest #WomenInspiringWomen, because she speaks about MS in such an authentic way.\u00a0 She doesn\u2019t sugar-coat what it means to have the disease and makes people who are able-bodied confront their own biases.\u00a0 She also changes the conversation on what MS should look like. If you haven\u2019t checked out her blog or followed this fashionista on Instagram<\/a>, you really should.<\/p>\n

In the meantime, read more about her story below.<\/p>\n

\"MS:
Photo: Alkan Emin<\/figcaption><\/figure>\n

Talk us through how you coped with your MS diagnosis?<\/h2>\n

It started with comfort food and a lot of crying.\u00a0 I felt like my life had exploded.\u00a0 I had just left home, but then, in the first few months, I moved back in with my parents.\u00a0 I needed help because I could barely walk. It was a scary time, but it\u2019s human nature to figure out how to survive quickly after we get devastating news.\u00a0 It\u2019s not long before we start asking \u201cWhat can I do to make this better?\u201d and it wasn\u2019t long before I started researching how I could do this for myself.\u00a0 Thirty pounds later, I put down the comfort food and started focusing on what I could do to protect my health.<\/p>\n

What were some of the things that you learned to help you cope with MS?<\/h2>\n

When you are diagnosed and have an attack, it\u2019s not unusual to be given heavy doses of steroids, which I was.\u00a0 That led to significant weight gain.\u00a0 About eight months after my diagnosis, I traveled to France on a vacation and stayed with a family that I had lived with when I had studied there.\u00a0 They presented me with hope.\u00a0 They gave me this book on natural healing. If somebody tried to give me that book now, I think I\u2019d be really annoyed.\u00a0 It\u2019s toxic to suggest these kinds of cures to somebody that\u2019s been diagnosed.\u00a0 At the time though, I really took it seriously and had my \u201clast meal\u201d in France.<\/p>\n

I took the book home on the plane even though it had to have weighed 25 pounds [laughs].\u00a0 It was written by a doctor who talked about healing chronic illness through a very strict diet which I adopted immediately.\u00a0 I dropped the steroid weight and felt better.\u00a0 That was my first foray into natural health, but I definitely don\u2019t want to give the impression that diet cured my MS.\u00a0 It\u2019s a relapsing\/remitting course and there are a lot of factors that go into that.\u00a0 I was raised on processed food like margarine and Tater Tots.\u00a0 This was my introduction to food as medicine and it kick-started a change of habits for me that has been modified over the last 19 years. It was the start of a different way of using food as medicine or as something that could be therapeutic, in a healthy way, not just as a source of comfort.<\/p>\n

MS is challenging because a lot still isn\u2019t known about it.\u00a0 Everyday people still don\u2019t know much about the disease and everyone\u2019s symptoms present differently.\u00a0 What did you know about MS and what frustrations have you dealt with in explaining it to others?<\/h2>\n

I didn\u2019t know anything when I was diagnosed other than it was bad.\u00a0 I probably thought that I might die \u2013 it felt very serious.\u00a0 In the first twelve years after my diagnosis, it was frustrating explaining it because I looked so young and healthy that it was hard to be taken seriously if I needed accommodation or just to be understood. It\u2019s hard for people to not believe what they see or to hold two thoughts at the same time \u2013 she looks good, but is also sick.\u00a0 It was hard at work or from an energy level perspective not being able to keep up.\u00a0 It\u2019s psychologically damaging because when you are trying to stay positive and focus on what you can do, you really have to hammer home what you can\u2019t do when you are explaining it to someone.\u00a0 It\u2019s hard emotionally and mentally to have to convince people that you are not well when that\u2019s not how you want to be perceived.<\/p>\n

Now it\u2019s a different frustration.\u00a0 I don\u2019t explain my condition to random strangers anymore. As women, we are raised to be polite and answer questions and that\u2019s what I did in the beginning. You are often caught off guard and don\u2019t have a prepared answer, but now I\u2019m much more protective of that with nosy randos.\u00a0 I think the blog has helped me more than anything explaining what my deal is to everyone in my life.\u00a0 I do think that bit by bit, chronic illness and disability is getting much more attention, even just in the last year. \u00a0The world is getting more sensitive to different marginalized communities. We are starting to learn what is an appropriate question and what\u2019s not.<\/p>\n

What type of support system did\/do you have?<\/h2>\n

I left home when I was seventeen, but as mentioned, I moved back in with my parents at the beginning of my illness.\u00a0 Being independent and living on my own was highly valuable to me and I couldn\u2019t wait to move back to my apartment.\u00a0 Like many patients, I intuitively sought out others who were experiencing the same thing that I was.\u00a0 You need to have family and friends, but it is essential to connect with somebody else, preferably somebody in the same life-stage that you are.\u00a0 That was much harder to do 19 years ago.\u00a0 I did manage to find a couple of other girls that were around my age and we would meet once a month, have wine and just talk about shit.\u00a0 It was so important and continues to be.\u00a0 It does take a team for sure.<\/p>\n

You\u2019ve spoken openly about \u201cCathy\u201d [the catheter] \u2013 and other tools that have been helpful with MS \u2013 why?<\/h2>\n

It\u2019s disappointing that these tools are still the butt of a joke.\u00a0 Saturday Night Live still makes jokes about continence care.\u00a0 These are tools that liberate us and we are reluctant to use them because there is so much stigma attached.\u00a0 The same is true of mobility aids and that is why I am working hard to normalize things and change the narrative about what we think disability is and what it looks like.<\/p>\n

You are a reluctant spokesperson thanks to your blog.\u00a0 Why did you decide to speak so candidly about your condition?<\/h2>\n

Any reluctance that I once had was a direct product of my own internalized ableism; my belief that having my name associated with disability and disease would put me in this category as \u201cone of them\u201d.\u00a0 A category that people pity, patronize and ignore.\u00a0 It\u2019s true that people with disabilities are often treated as second class citizens, but there came a point when I decided that I wasn\u2019t going to let the outside world define who I am as a disabled person.\u00a0 If I just kept quiet, then I was buying into that.\u00a0 If we want the narrative to change, we have to be willing to put our hands up and start setting the record straight.\u00a0 So, I am no longer reluctant \u2013 I put my hand up and claim this disabled identity because it’s not true that we are less than, and somebody has to say it.<\/p>\n

\"MS:
Photo: Alkan Emin<\/figcaption><\/figure>\n

You are refreshingly candid about admitting the disease has you and you don\u2019t sugarcoat the impact that it has on your life.\u00a0 People with chronic illnesses are often given the added pressure of being made into heroes because of their condition.\u00a0 How do you manage these expectations?<\/h2>\n

This is part of ableism and it\u2019s an \u201cism\u201d that most of the world doesn\u2019t realize is an \u201cism\u201d.\u00a0 There are so many factors that contribute to how people with disabilities are expected to behave. When you are repeatedly told not to let this disease change or define you, the message is that your identity is a very unpalatable thing and you should hide it.\u00a0 The message is that people don\u2019t want to hear about it unless you are defeating it or overcoming it and that is about making other people feel comfortable around your disability.\u00a0 It is problematic because as long as we are overcoming shit, there is no pressure to be more inclusive or to make spaces accessible or provide jobs to people with disabilities.<\/p>\n

I remember my first appointment when my doctor told me that there was a 50% chance that I had MS and I was devastated.\u00a0 My next appointment when I was actually diagnosed, I remember cracking jokes because even at that young age and even after officially having this disability, I instinctively knew that I had to make other people feel comfortable, even my doctor which is crazy.\u00a0 I can still see his face falling when he was telling me that I have this disease and I\u2019m cracking jokes.\u00a0 There is this pressure to let other people know that you are OK.<\/p>\n

In reference to this hero bit, when somebody without MS tells me that I am their hero, just because I have MS and don\u2019t want to kill myself, the subtext is your life sounds unbearable, I could never live your life.\u00a0 That isn\u2019t a compliment, it\u2019s actually pity and that\u2019s gross.\u00a0 This is why I believe so much in the power of media because a lot of these ableist ideas and internalized ableist ideas that we have are because of the stories and tropes that we\u2019ve seen and learned about disability.\u00a0 We have seen tremendous changes that impact other marginalized communities in the way that story telling has changed and been more inclusive and authentic for those communities and we really need that to start happening with disability.\u00a0 I\u2019m working on that too.\u00a0 I have a show in development with Shaftsbury Films that features a main character who has MS \u2013 and I\u2019m excited about that.<\/p>\n

You\u2019ve mentioned that it\u2019s important to grieve what you have lost [due to MS] but you can\u2019t live there.\u00a0 What advice do you have for someone whose life has changed because of an MS diagnosis or because of another disease? What advice do you have for those in a supporting role?<\/h2>\n

A lot of language around chronic illness is about having this warrior or fighter mentality and culturally, we do everything that we can to minimize and eliminate all kinds of pain.\u00a0 MS doesn\u2019t do all of its damage when you are diagnosed.\u00a0 Every time a new symptom shows up or a disability increases, it can feel like you have a whole new disease and it\u2019s important to acknowledge that. \u00a0When people with MS and their loved ones pretend it doesn\u2019t suck \u2013 it\u2019s unhealthy.\u00a0 It doesn\u2019t mean that we have to be sad forever, but we have to process the feelings.\u00a0 I think the only way out is through.<\/p>\n

I remember when I was diagnosed everyone was trying to protect and shield me by acting like it was no big deal.\u00a0 I had one girlfriend break down and cry and that was my favourite response because I felt like was being gas lit by everybody else who didn\u2019t want to burden me with their sadness or feelings.\u00a0 I felt like how can you not see that the world is ending right now?\u00a0 Give yourself permission to feel those feelings and that goes for support people also.<\/p>\n