Oh man! What a whirlwind weekend it has been. Let’s start before the very beginning…
By the end of last week, I was quite nervous about Saturday’s Lyme disease awareness protest. I was ecstatic to have found the event on Facebook and knew that Jan and I absolutely had to be there and were going to be there no matter what! But I also knew it wasn’t going to be an easy road.
By Thursday morning things were not looking too good. Sure, the Habs had won (side note prediction: Budaj (Tokarski?) will shine! Price will be back for the final round!), but I was becoming weaker and weaker. I had to say Au revoir! to my little sister as she was moving to Edmonton, and Jan drove me to see her. After spending less than an hour with her, and she’s one of my most favorite people in the world, my body was in so much pain and my mind buzzing from it all that I had to cut our visit short. It broke my heart but I had to say goodbye to her and get me back home so that I could reassume a more horizontal and quiet position. I was pretty devastated that this is what my life had come to, robbing me of these precious moments.
Also, no big deal, before coming back home we just had to pop into the pharmacy to get me a (?#$?&#) wheel chair. Only THE unmistakable symbol of disability. Walking any more than 5 or 10 meters had become too difficult, and standing in place longer than 10 seconds was out of the question. All this was building up tension inside of me that I could hardly bear. We parked by our place and Jan asked if I wanted to be wheeled the 10 meters towards our apartment stairs. I looked at him in anger, turned around, hobbled slowly and painfully towards the stairs and up the stairs, went inside, and totally broke down.
I felt shame. Deep maddening shame. Was this really me, was this really my life? I couldn’t spend time with people I love and now had to ride around on a wheel chair in my (hipster-full) neighbourhood? Me, invisibly sick all these years, now visibly sick, weak, dependant, needy… society’s reject. I went to a dark place for a few minutes…
But you know what? One advantage of being chronically ill for so long is that you get a ton of practice dealing with the dark side (if you want to make it out alive that is), and then… really strong within you, the force grows.
Within minutes I had managed to stare my shame down. Because I know that when I see someone who is sick, or struggling, or physically weak, or struggling with mental illness, or even just upset that their job is stressful or that their kids are a pain, I do not judge them. I do not think they are weak. I would never dare. And yet the reflex to judge myself can sometimes still be so strong. Oh, humans… we’re such intelligent yet totally flawed creatures.
I wiped off my tears and we immediately set off on a super fun wheel chair ride around the neighbourhood. It was beautiful, warm and sunny, and I went faster and further than I had in weeks! I was like a little child discovering summer for the first time. It was totally worth it and I felt happy and joyful. And it also made my positive resolve that much stronger, je ne me laisserai pas abattre, putain!
For the rest of the time leading up to the protest, I concentrated all of my energy (yup, all of the very little that I scooped up) on the mission that was set in front of me. I needed to be very strong mentally if I wanted to avoid breaking down on the way to the protest, or the moment I got out of the car and sat in my chair, or the moment I saw people who are struggling, etc. As much as I was eagerly awaiting to speak out about this great injustice, tapping into the anger that has inhabited me for so long made me shake from head to toe. I worked hard to turn the terror into strength. I was looking forward to meeting fellow lymies, but I also feared seeing the all-too-familiar pain in their eyes. And as much as I feel so ready to take all this on, I have never been so physically weak in my life, which obviously affects my mental stamina, and I feared the protest would make me just too vulnerable. However, I would not have missed this for the world, so I really had no choice but to just do it.
On Saturday we arrived at Place Émilie-Gamelin, Jan rolled me towards the rather large group of protesters all dressed in lime green colours. Everyone was talking, sharing stories, everyone with a story worse than the other (number of years infected, number of doctors, money spent in the States, horrible symptoms, etc.). Within minutes a CBC reporter asked to interview me and my heart did not even skip a beat as I said “Yes, absolutely!”. I felt ready. I’ve been preparing for 12 years I guess. I was able to get many key points about Lyme disease across to the journalist and that made me very happy.
We wondered if the Lyme protest was going to make the evening news at all, and it did! We were so happy that the cause was getting some airtime! And imagine my surprise when the AQML shared Sunday’s CBC article on their Facebook page and I saw my face as the associated photo! I think I didn’t close my jaw for about 15 minutes after that. And it really hurt. 🙂 Read the article here: Lyme disease diagnosis a battle in Quebec, patients say.
I think Marie-Claude Cabana did an excellent job covering the story (well minus saying that I can’t shower by myself, which is not true; I told her that I sometimes used a chair because I was too weak to stand long enough and it got too painful; urgh.). The truth is, Lyme disease is such a complex illness and issue that explaining it adequately in a short news segment or article is impossible; in 16 blog entries I feel I haven’t even scratched the surface. You really need to get deep beneath what is visible to understand the situation, go “under the skin” of the issue, so to speak.