I try to live in the moment and let go of my fears, however, my life is riddled with little reminders. Reminders of who I was. What I was. What I was able to do. What I had to look forward to. Reminders of my health, and the fragility of it all.
The Christmas holidays can be rather challenging for me. As you may already know, I was diagnosed during the Christmas holidays of 2013. The first year and half after diagnosis I was miserable. It was hard to look forward to anything, let alone try to get excited about Christmas the way I once had. My life is different. It's complicated. Sometimes its just a mess. December is a reminder that my life isn't what it was, or what I thought it was be. You don't really anticipate to be struck by an incurable and often fatal disease in your 20's. Although I was planning for a lot of things, this was no where on my list.
The past year of my life has been pretty great (all things considering.) This is something I couldn't imagine myself saying just a few years ago. When I look back at the past year I got to do so many special things, things that I didn't think were possible. I've had the chance to have candle light tea at the Prince of Wales (even if I cried behind my sunglasses because I was so frustrated that I couldn't walk up a hill without issues.) I had the opportunity to see The Tragically Hip live, despite tickets selling out in mere seconds. I've been able to go on little adventures, scored a coveted pair of Fentys and briefly had a job writing.
This year I allowed myself to look forward to the holidays. I decorated the Christmas tree while listening to She & Him. I joyfully got gifts for friends and family that I hoped would make them smile. No matter how hard and foreign it felt, I tried. I gave myself something to look forward to. Of course I still cried and felt depressed on the day that marked my...date of diagnosis? Some people call it their anniversary. But that doesn't feel right. What word describes the worst day of your life? Is there a word in the English language that means "the day you found out that you had some incurable disease you never heard of and aren't supposed to live too deep into your 30s?" (Whether I believe that will truly happen is still up for debate and dependent on the day.)
That day passed and I decided I wanted to celebrate instead of continuing to mourn. I am not exactly sure what I was honouring, but I felt the urge to do it. Perhaps I wanted to celebrate how great the past year had been in hopes of carrying on my streak of happiness. I called a hotel and asked for their nicest room. That room was booked, so I got the second nicest room, which had a superior view.
No matter how hard I try, little reminders scatter my life like ashes. On December 23rd at 4:00 pm someone called me to book a consultation along with an exploratory surgery. It may not sound like a big deal, but it stirred up a lot of emotions of me. This phone call was a reminder that I am a "patient," that I am chronically ill, and that it is serious.
I felt frustrated that they waited until the day before Christmas Eve to schedule this, even though they had known for several weeks that I needed to be booked in for the surgery. I also felt defeated because I had shared with my new medical team that stress triggers an immense amount of nerve pain throughout my body, mostly occurring in my head. Although I remained calm and clinical on the phone, I had a small breakdown as soon as I hung up. Sometimes the reminders are all too much, especially before the holidays. Do we ever get a holiday from all this?
Sometimes. Sort of. Not really.
After having a mini panic I pulled my shit together. The holidays came and went, and more reminders did as well. My boyfriend had a cold, which means I couldn't see him for the dinner we have every year at a special restaurant with his family. I wouldn't have thought twice about seeing him if he had a cold prior to my diagnosis. However, now catching a small cold has big consequences for me. It can also turn into a dangerous situation. It was now Christmas Eve and I had absolutely nothing to do. I know my parents were expecting me to be sad, but instead I asked my dad if we could go out for a drink and pick up a gingerbread house for me to assemble instead. I felt good, and I want to take advantage of every single day where I can.
Luckily Spencer was better by Tuesday, which is when we went to Niagara to celebrate for no apparent reason. The hotel was decorated with whimsical Christmas decorations in the lobby, and I became excited again. We made our way to the room. Our room had a floor to ceiling window view of Niagara Falls. It was absolutely beautiful, and the perfect way to look at the Falls from dusk to dawn. The room was a loft, so there was a set of large stairs going up to the bedroom. Stairs make me pretty short of breath, so I rationed my steps. Again, a small reminder. I am 28 and I can't walk up the stairs without thinking about it
I need nocturnal oxygen, meaning I need supplementary oxygen for when I sleep. I always use a large tank and calculate how much oxygen I will be able to use, and how long I will be able to sleep. Before diagnosis I stopped breathing in my sleep several times, the thought of sleeping without it is pretty scary. At 5 o'clock in the morning. I woke up and just knew my tank was empty. I double checked- it was empty. I had only lasted for 4 hours...only half of the amount I should have lasted.
I rolled over to the view of The Falls, peering over my boyfriends shoulder to see the city lights and the mist. I started crying. This was another reminder. Another reminder that I don't have the life or worries of a typical person in their 20's. There I laid wondering if I should stay awake, or risk trying to sleep. I rolled on to my other side, cursing my oxygen tank, and how its company managed to screw me from a completely different city. I eventually fell asleep, but would wake up panicking several times throughout the night.
Although I am extremely grateful for the quality of the last year of my life, I also live daily with those little reminders. None of us are immune to the ravages of life. Some of us get knocked more often and harder than others, but we all have received a proverbial "lemon" at some point. I tell myself to get back up and keep trying every time a reminder or lemon lands in my lap. I guess life sometimes isn't about the struggles or the blows to the gut, but about how you get back up and why you keep trying.
Maybe sometimes life is about what you do with those lemons. Do you let them sting your cuts? Or do you squeeze it into a tea?
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