Note: The following was originally written for The Lupus Magazine. As it is no longer online and I would still like people to be able to read the articles I wrote for that magazine, I am dumping them all here. Originally published January 2011.
It is a New Year. This is a time when many people make grand resolutions; pacts with themselves to improve their lives or who they are. People ask me, “So what is your New Years resolution?” I respond, “I don’t have any. Life is too short to wait until tomorrow to change what I can change today.” When the topic of “Bucket Lists” come up, I respond similarly, “I don’t have a bucket list. I’m doing every thing I want to do with my life. If I want to do something else, then I’ll do it.”
This usually prompts some sort of conversation about how it appears that I don’t have any wishes or desires, that there isn’t anything left in my life to improve or to do. Normally, that is when the topic of conversation will switch to something like: “I live with a disease that is potentially fatal. For me, tomorrow, I may get terrible news and that will be that. My life is complete. My life is full. I have made peace with it. And if I die sooner rather than later, I have no loose ends. Just because you are healthy, your life could end tomorrow, as well. Terrible accidents happen all the time. Why put off for tomorrow what you can do today? Why are you not sucking whatever marrow you can out of life and just do now?”
It took quite a bit of work on my part to be at peace with something as terrible as lupus. I was lucky and grew up with great role models, who taught me how to live with dignity, despite the overwhelming challenges presented to you when you live with a chronic and debilitating illness. They taught me that you do what you can do today and don’t worry about tomorrow. Sure you have to weigh how your choices today will affect your tomorrow, but don’t put anything off if it can be helped. However, despite the lessons I grew up with, finding my own personal peace took a few big wake up calls.
The first of these was shortly before my road to diagnosis had begun. I was dancing 8 – 16 hours a week. I had been unhealthy for years and had many misdiagnosis, as lupus was just not considered. But then, I couldn’t dance anymore. Almost overnight, I went from someone who was extremely active and physical, despite pain and fatigue issues, to being completely useless. I couldn’t get out of bed. I couldn’t move without it feeling as if knives were being twisted and jabbed into every single joint. Not only were my gross motor skills dying, but so were my fine motor skills. I could no longer hold a pen to write. And my brain was getting increasingly foggy. My nearly eidetic memory turned into some senile Swiss cheese mess, overnight.
My dance teacher had lupus. I had missed over a month of class as a result of my health spiraling out of control, in the blink of an eye. After the month, I went to her and told her that I had to drop out of class. After talking with her about my issues, she asked me the most important question anybody could have asked me at that time, a question that ended up saving my life, “Have you ever been diagnosed with any muscular or skeletal disorders?” I began to list off all the things I had been diagnosed with over the last decade. She then told me, she thinks that I may have lupus and I need to sit down with my doctor and tell him, “Since I was 14 or 15, you and a whole team of other doctors have diagnosed me with this and this and this. Don’t you think they can all be related?”
And thus began my road to diagnosis. My dance teacher reminded me that 5 years prior, she was told she would never walk again and now she was teaching dance full-time, once more. My Rheumatologist started me on my first medication cocktail and I returned to dance class a month before the end of term. The complications of lupus took my dance teacher’s life, without warning, a few short weeks later.
This was a huge blow for me. I had just begun my lupus journey and quickly got a reminder of how fickle this disease can be. However, I did my best to hold on to the lessons she had taught me since I was a teen: You can reinvent yourself. You can have a good life, regardless. Find new things to drive your passions, ones that help you to feel alive. (A bit of an aside: her oldest son was one of my best friends in High School and her husband was my grade 11 English teacher. When I was going through a very difficult period in my teen years, he would write little notes on the back of my assignments, letting me know about the struggles his family and wife went through because of her lupus. He helped to remind me that I was never alone and despite my challenges, good can come from them.)
I tried my best, despite my fear, to not throw a pity party. But curve ball after curve ball were thrown at me. My common-law spouse left me because I was a “lazy, useless, c*nt and a terrible wife who can’t take care of things.” I had family members whispering “She’s a hypochondriac, don’t pay her any attention.” I had no emotional or physical supports, as I attempted to pick up the pieces of my life and try to find a new one. All I had were the lessons taught to me by my grandmother and dance teacher. Eventually, I re-found one of my passions: theatre. I couldn’t do my first love anymore (dance), so I went back to my second love. And then, during a production that I was co-starring in, I was hit with another huge blow.
I was not yet diagnosed with my other primary condition: Antiphospholipid Syndrome. The weekend of my 28th birthday (early January), I spent in the emergency room, as I began to hemorrhage. From the time my periods began, they were never normal. The doctors had all kinds of theories as to why, but none of them ended up being the cause. Then, my uterus just stopped working. I stopped having periods and all I did was bleed. (Some may not be aware, but when you menstruate only a small portion of what you see is blood, the rest is tissue: the lining from the wall of your uterus being shed.) I had no tissue. My uterus stopped preparing itself for a fertilized egg and all it did was bleed. That weekend, I had lost almost 2 cups of blood. They put me on a bunch of different hormone therapies to try and stop the bleeding, thinking it was due to a hormonal imbalance. For that entire year, I had 2 week (combined) where I did not bleed to some extent. Then December of that year, I was told I would need a hysterectomy. The news was not surprising, but it was still a little devastation.
Because it is a major procedure and they had the bleeding under control to the point where it was no longer life threatening, I thought I would have time to absorb this news. I thought it would be a few months before any surgery would be booked. Shortly after my 29th birthday, I received the news that I’d be having the hysterectomy in early February. I only had a couple of weeks to prepare for this. However, I told myself, “After they do this, dissect my uterus and do the pathology, I will get answers as to why I’ve always had issues and why I bled for so long.” When it was time for my post-op follow-up, my Gynecologist sat me down and, with a very sad look on her face, told me, “I am so sorry. We have no idea what was causing your issues. Your uterus was the size of a walnut. There was no scar tissue. No fibroids. Not even any indication that you’ve had children. Your uterus presented like that of a 12 year-old prepubescent girl. I wish I could give you some answers but I have none.” But at least the whispering from my family had changed to, “Well maybe there is something wrong with her after all.” It did not matter to them that I had to take 8 different medications just to keep me walking and out of the emergency room every weekend.
I did my best to cope with the not knowing and the no answers. I did my best to continue to build a new life for myself. I felt broken and discarded. Here I was, a 29-year old single mother, with no uterus and no possibility to give some future partner a child if he doesn’t already have one of his own (this is very important to me). In addition, a diagnosis of “Suspected lupus plus (insert 10+ secondary disorders here).” It was very difficult to not allow this dark reality to be my driving force. I spent many nights crying as a result. Yet, I still continued with theatre. I still found things that ignited my inner spark and fought the dark with all that I could.
Then, at the age of 30, 1 month after a production I co-starred in ended, I had a stroke. It should have come as no surprise, as I started to have TIAs when I was 19. I had my first TIA during the last two weeks of pregnancy. The doctors at the time thought that it was due to my estrogen levels being so high. But then they continued and I spent more time in emergency that I can count battling, not only TIAs, but with horrible migraines. None of the neurologists could find any real cause for them. They all theorized that it was hormonal, as they also took my menstruating history into account. But despite my almost 11 year history of neurological problems, it was a huge “WTF!” when I had my stroke. Who bloody has a stroke at the age of 30?!? Of all the absurd things to happen to me, after a long list of absurdities.
I was left, once again, to reinvent my life. I had to relearn how to walk, talk, eat, dress myself, bathe myself and how to think. I had to have people wipe my ass. I had to have my children feed me. It completely shattered any dignity that I once had. It completely tore me down. The only way to go from there was up. I had two children who needed a mother and there was no way that a pesky stroke was going to take that away from them. So I held on to the lessons I learned from those two amazing women and I fought. It was after my stroke that my diagnosis changed from “Suspected lupus” to “lupus” with the added “antiphospholipid syndrome.” One good thing did come out of my stroke, I had answers to why I had to have a hysterectomy the year before. It was because of the APS that I was bleeding. So there was some light in that darkness.
Ever since my stroke, I stopped putting off for tomorrow what I can do today. I stopped being afraid of the word “no.” If an opportunity presented itself, I went for it. After all, if I received a no, I’d be no further behind or ahead of where I was at that moment. I had nothing to lose and every thing to gain. And now, I manage 3 websites/blogs, contribute to an additional 2 blogs, write for the Lupus Magazine, am the design and layout editor for The Vaccine Times, plus I’m the Assistant General Manager/ Programming Director and a personality for a radio station. I may no longer be able to dance for 8 – 16 hours a week, I may no longer be able to shine on stage in some play, but I have found new ways and avenues to do the things that ignite my spark. At times, I overdo it. I tend to do way too much and then crash for awhile, only to repeat the cycle. But I am living and doing things that I love to do. And if I receive bad news tomorrow, I can be at peace knowing that I’ve done every thing that my brain has decided it wants to do as of this point. I have reinvented myself.
At times, my brain still does the, “Man, if I were healthy and felt 100% again, instead of running at 25% – 50%, imagine all I can do. I’m a lame horse.” But then I give myself an internal slap across the head and remind myself that I am doing amazing things, despite lupus. I am doing things that healthy people are dreaming of doing because they are too busy building their lists and not actually living them.
So, I ask you, what drives you passion? What are the things that you love to do? What are your hobbies? What fills you with the type of joy that causes you to become stupid? If you come back with an answer that ends with, “But I am no longer able because of my lupus”, ask yourself, “How can I transform this passion into something else?” It may not give you the same joy, but it will help fuel your day to day spark and keep you going through the really hard battles.
It could be something as simple as setting aside some time every week to do some crafting or writing a journal. Nobody may ever see it, but don’t do it for others, do it for you. I don’t want to sound all preachy, but it would suck if something terrible, like a stroke, is what it takes for you to do now, instead of putting it off for a tomorrow that may never come. Find something that you love, even if it is small, and let it transform from a caterpillar to a butterfly. At the risk of sounding trite and cliché, seize the day. Do what you can do to make every day a Happy New Year. And if you stumble and fall (we all do), pick yourself up, brush off the dirt, treat your scratches and remember, there is always tomorrow to try again. And if tomorrow never comes, at least you tried today.