Dying Business

Did You Know?

The following is another attempt at some point over the years to explain the frustration, intense anger and sadness I've felt about my body. It's repetitive. All of it is, and perhaps, it is exceptionally so - for someone who doesn't live this existence. I admit though. It is repetitive, but when it is not repetitive, it is often catastrophic. 

• Did You know that World Lupus Day is May 10th? 
• Did You Know that lupus is a chronic autoimmune illness? 
• Did You Know that lupus is an invisible illness? 
• Did You Know that I have lupus (SLE - systemic lupus erythematosus)?
• Did You Know that's why I won't go near you if you have a cold? 
• Did You Know that a guy once used this as a reason to dump me? 
• Did You Know that in second year (end of 2012/beginning of 2013), I experienced one of my worst and most difficult times with lupus? 
• Did You Know that even though my leg was so swollen and I couldn't walk, I cabbed to and from classes, and to and from exams during the end of October to December 2012?
• Did You Know that I finished second year on time despite how terrible, exhausted and weak I felt? 
• Did You Know that it took well over half a year to recover fully?
• Did You Know how much weight I lost? How skinny I looked? 
• Did You Know that I dropped to the weight I was when I was maybe 13? 
• Did You Know how absolutely sick I looked? 
• Did You Know the amount of time I spent in the ER, at doctor appointments, in bed because of how bad it was? 
• Did You Know at the age of 18/19, I had three blood clots and a pulmonary embolism on top of pneumonia?
• Did You Know how absolutely painful it was? 
• Did You Know I sat awake all night because it was painful to breathe, much less lay down and try to sleep?
• Did You Know that these are all complications of lupus? 
• Did You Know I have had this diagnosis since I was a kid?
• Did You Know that's why I have a rash on my face and my hands look the way they do? 
• Did You Know how rarely I tell anyone about this or having lupus, or how lupus affects my life?
• Did You Know the number of drugs I'm on to keep my lupus in check?
• Did You Know that even though it is free to see a doctor in Canada, it is not free to pick up your meds? 
• Did You Know that one of the drugs that could help manage my lupus and drastically make my life better cost nearly $2000 per month? 
• Did You Know that $2000 per month is not a reasonable or possible expense? 
• Did You Know how tiring it can get? The physical drain, the emotional drain? Feeling like it's unfair to be so young, and sick? Feeling like your life is out of your control?
• Did You Know how strange it is to be so young but so vulnerable to the state of your health? To have your capability capped off? To feel so limited compared to your peers? 
• Did You Know how difficult it is to know and feel your body giving up on you? Collapsing on you? 
• Did You Know that my lupus is still so much easier to manage than many other cases of lupus? Many other invisible illnesses?
• Did You Know that I have always tried very, very hard not to let this diagnosis or this illness get in the way of living? 
• Did You Know that I have an incredible support system? People I love who are helpful, understanding and encouraging when life becomes more than I can bear? 

Lupus is something I deal with on a daily basis. I am reminded and confronted when I put on my makeup in the morning. I am reminded and confronted the three separate times a day I take my pills. I am reminded and confronted when I feel my hands tingling. I am reminded and confronted when strangers stare too long. 

But I am also reminded and comforted by the number of people in my life who are so, so supportive. I am reminded and comforted by how lucky and blessed I am to live the way I do, to have the resources and mobility I do. I have the resources to control the pace of my life. I am able to live as comfortably as possible. I can manage my lupus and I have access to resources when things get out of control. I have friends and family who understand that things can get tough. When I say I'm too tired to do something, or cannot do something, they understand. This is lucky. I try not to take it for granted. I try not to take any of this for granted. I am very lucky. I try to remind myself of this as often as I can - above or along the frustration, anger and sadness I also feel. 

Did You Know I have lupus? Did You Know I live an incredibly privileged life?

A few pictures from that second year when my lupus got the worst it did.  

The Light

One of my favourite things about visiting Los Angeles was the light. The light was beautiful. It was astounding, majestic. To be somewhere where it felt so open, so boundless. The light - both in the sun and the airiness of the place - gave you a real sense of brightness. An extra bounce to your step. An extra dose of positivity. I would've stayed in LA for just this. To feel the energy of the sun coursing through you, igniting you. I think you can see it in everyone there. There's a kind of smile you can only get when you're surrounded by so much sun.

"New York was my first introduction to the possibilities of light, crashing through gaps in curtains, transforming people and sidewalks and buildings into golden icons, or black shadows, depending on where they stood in relation to the sun. But the light in front of the mosque - the light I stood in as I was greeted like a local hero, simply for rising from my bed three hours after most of the women and children I lived with - this light was something else again. It buzzed and held you in its heat, it was thick, alive with pollen and insects and birds, and because nothing higher than one story interrupted its path, it gave all its gifts at once, blessing everything equally, an explosion of simultaneous illumination" (Zadie Smith, Swing Time, pp. 254-255).

In people, it is just as important to look for the light. To be around light, surround yourself with light- with people who glow and radiate light and goodness.

There are people out there who, I think, really are the embodiments of light. Individuals who see only the goodness in people, the goodness in the world, the potential for goodness in everything. Individuals who extend a hand, a smile - something that makes the world tilt on an easier axis. I see it in some of my friends. I see it in my favourite yoga teachers. I see it in myself sometimes. I see it in some books, a truly moving concert, a bright smile on the street. I see how rare this light is.

Seek it. Seek the light.

An Open Letter

The following letter was originally written on September 10th, 2015 - more than three years ago. I have written about this topic again and again. I have never published anything publicly. I rarely talk about it, I barely disclose it at all. But here it is. 

In the month or so before my 25th birthday, I want to be a little more honest with myself. I want to be a little more honest in general. Vulnerable. I think I owe it to myself. 

I have lupus. I have had lupus since I was 5 or 6. I can no longer remember my life without lupus. The vast majority of people in my life do not know this about me. People who have known me for decades may not know this about me. I never disclosed it as a kid. I rarely disclose it now, and yet it shapes my world in so many ways. A few quick examples: I take a small handful of pills every day. The appearance of my cheeks and skin. My energy level. The occasional brain fog. The emotional turmoil. The financial burden of paying for medicine. 

Over the next month and a bit, I want to try talking about it. I want to try to be honest about it. Sometimes, it really fucking sucks. It can get so, so painful - physically and emotionally. A couple weeks ago, my favourite yoga teacher tells the class: Don't think of life as Why is this thing happening TO me? Think of it as Why is this thing happening FOR me? 

Let's begin with the letter I wrote more than three years ago.

Dear Phil:

I remember our first date when I told you I had lupus. It was probably more casual than it should have been. Lupus isn't a casual thing, and I'm not sure why I mentioned it on our first date. I think I was telling you about a time when I fell very ill. I think I almost died at the age of 18/19.

Nothing happened after I told you. Typical. Most people don't really understand lupus. You certainly didn't. Lupus is largely an invisible illness with some celebrity hosts like Selena Gomez and Lady Gaga. These are only media speculations though. I'm not sure how many people have come out and said they have lupus and they actively deal with it. I can't say much about you knowing very little of the illness. Most people are that way. You brushed it aside. We continued our date, and we started dating pretty quickly after that first date. I think you saw me as someone whose cheeks were rosier and maybe not the best skin, but ultimately just like anyone else. I remember you telling me I was pretty on our first date. I may have blushed, said thank you and brushed off the compliment. I don't remember much of it anymore. It was a while ago, and we no longer talk so I cannot clarify these details with you.

Lupus is shortened from systemic lupus erythematosus (SLE). It is a systemic autoimmune disease that can affect various parts of the body and organs. Each case of lupus can be very, very different. There is no cure. It is mostly treated with drugs that suppress the immune system. Wikipedia explains lupus as "the body's immune system mistakenly attacking healthy tissue". When I was little, my doctors explained it to me as my body's fighters attacking itself. There is a war going on in my body. This doesn't always happen though. Just during flare periods when my lupus is active. During other times, my body can be fairly healthy and I function just as well as anyone else. OK, almost. Because of the nature of lupus and in particular my lupus, I do always have to wear sunscreen, avoid excessive stress, get my flu shots, and wash my hands.

A short time after we started dating, you texted me to tell me that you have to stop seeing me. You told me that you did some online research about lupus and if you continued to see me, you would hurt me. I don't remember if I asked you what kind of research you did. You didn't understand the nature of lupus and you didn't know the history of my lupus. I didn't object. I said OK and I didn't say much else to you. Two days later of radio silence, you messaged me again. We continued to see each other and we eventually ended things for reasons unrelated to my lupus. I never told you how hurt I was that you cited my lupus as the reason why you had to stop seeing me.

Fast forward a year, we haven't spoken since 2014. (We had our last real conversation in December. I ran into you once on the street.) I know you have a new girlfriend and I've been dating around too. We don't talk anymore. We don't have any point of contact. No social media. You likely will never read this. Today, I saw a new doctor. I sat at the doctor's office and I explained my lupus. I told him about when I was diagnosed, some of the medications I've used, some of my flares. I explained some of the concerns I have now. We changed some of my medication around, but he explained that my counts were normal for the most part. I go back in six weeks.

My lupus bubbles now and then, but I haven't had a bad flare in a little while now. Knock on wood. For the most part since I was diagnosed as a kid, my lupus has been manageable. I don't have any trouble taking care of myself. I lived by myself for four years while I was at Queen's. I do a lot of what other people my age do - date, drink, the occasional smoke, have sex, stay up late. It takes me longer than typical to get over a cold and I can't ignore flu shots, but that's OK. It's nothing too bad. All things I can handle. I feel normal.

I was hurt when you cited my lupus as the reason why you had to stop seeing me because as a kid, I hated my lupus. I hated that I couldn't do the same things as the other kids. I always had to be careful. I hated that the other kids used to call me names because of the rash on my face. While lupus can manifest in many different ways, mine manifested mostly on my skin as a butterfly rash on my face. I hated being different and being excluded for it. With those words, you told me I was different and that I couldn't be more than this part of my body. You were wrong. You realized this after two days of radio silence.

Today after my doctor's appointment, I didn't know how to feel. I think my lupus is bubbling a little, but nothing too extreme. I'm mostly fine. I guess I was a little upset because the first time I saw my last doctor, I was severely ill. It was a bad flare. When I said bye to my last doctor in June, she told me she still remembered meeting me because I came to her so frail. I was skin and bones, I could barely walk. It was bad. I recall constantly being in different doctor's offices reciting my perfectly memorized medical history. It's been a long way since then.

Today brought back bad memories, like that last flare and that first appointment back in 2012. Like when you told me you had to stop seeing me. Like the kids from my childhood. Ultimately though, I'm doing well now. I live with my lupus. I try to be careful with my body and taking good care of it. I try to be more comfortable with sharing my lupus and accepting of it. This isn't a casual mention of lupus. This is me saying I am working on myself- lupus and all.

Halloween 2018

We stayed up till 3 and I dressed up as Spinelli.

Pictured above: Bennett, Kyle, Alice, Mel, Christian, and myself.