Personal Story

Written by on April 22nd, 2016 – 1 Comment

GUEST BLOGGER: PASCALE LAVALLÉE

Pascale Lavallée 1I remember that day five years ago. My dad was with me. We were sitting in the waiting room at the neurologist’s office. The secretary didn’t look very friendly – you know, the kind of person who always looks as though you’re bothering her. There were hundreds of files in the cabinets behind her. All those sick people who needed a file here to get better. I remember feeling uncomfortable to be sitting there in that chair. I felt as if I was taking the place that belonged to someone who really needed to see the doctor. There was nothing wrong with me – no more symptoms at all. It was just fatigue, or maybe the side effects of my birth control pills. So when the neurologist invited me to come into his office, I went in alone. But he suggested that I go get my father from the waiting room.

Then the diagnosis: multiple sclerosis. To me, it sounded like a skin disease. Maybe that explained my problems with eczema. When I turned to my father, I could see that something was wrong, but I knew absolutely nothing about neurology and I had no clue. My father grabbed my hand and gave me a hug – a strong hug, full of love and pain. When the neurologist started to explain the disease to me, I tried to figure out what was so serious about it. I understood that people with the disease often end up in a wheelchair after a few years. OK, fine, I can live with that, but then what? Am I going to die? Am I going to become a vegetable? Am I going to be unable to remember the people I love? No, no and no. So I was still trying to work out what was so bad. The only thing I had in mind was a planned trip to Asia; I told myself that, as long as I could travel, everything would be fine.

Once the paperwork was done, we left the office with a prescription in hand, and a disease as well. We walked down the long beige corridor to the exit. There was a strange silence and a dad who was still holding me tight. I guess I was pretty tactless when I coolly announced the news to my mother, standing on the other side of the counter, as if I were telling her I had a cold. Then I had to tell my brother and sisters, my boyfriend, my family, my friends. Telling my sisters was easy and natural. We were standing next to a tree outside. “Girls, I have multiple sclerosis.” “OK, are you going to die?” “No.” “So it’s not that bad.” “No, it’s not that bad.”

The hardest thing for me in the beginning wasn’t having a disease, it was coping with my friends and family. I would have acted exactly the same if it had happened to one of them, but it was still difficult to deal with. I felt suffocated by all the people who wanted to take care of me. My parents did research; they looked for information everywhere, wanting to know what was happening to me, wanting me to see the best neurologist, take the best medication, attend support groups, meet with people who had the disease. It was suffocating. With hindsight, though, I can only thank them for all that. I don’t think I was able to take care of myself, so they did it.

In the end, I never cried. I looked for what was so terrible about this disease, and the most common response to my questions was “we don’t know.” We don’t know if it will get worse, we don’t know when, we don’t know what, we don’t know how long, we just don’t know. So was I going to cry over “we don’t know”? No. I wasn’t going to put my life and my dreams on ice for “we don’t know.” I wasn’t in denial, though. On the contrary, I came to grips with my new condition and took the time to try to understand it. Above all, I started to make decisions based on this new condition. Learning to live with the disease will take me a lifetime. And I don’t want to spend that that lifetime living at half throttle, just in case. We always have choices in life. Even if you don’t have a choice about being in a situation, you have a choice about how to react to it. As for me, on April 15, 2011, I made the choice that everything was going to be fine.

Why am I talking about it now? Because being ill isn’t the end of the line. Because I don’t think my life is ruined. In the beginning, I didn’t talk about it. I didn’t like the pitying looks and the little “it’s going to be fine” pats. I knew I was going to be fine, but to see some people’s faces, I wondered if they would be. If we had to start crying rivers of tears every day after getting a diagnosis, there wouldn’t be any more fun in life. So my family and I decided to laugh about it. My brother, my sisters and I became real pros. We make jokes about my health and we laugh. I’m not saying it’s not serious to be ill – I’m just saying it’s not the end of everything. I didn’t shout “Oh joy!” when I started to inject drugs, when I couldn’t sleep at night because I was shaking too much from the side effects of the drugs, when my body ached the day after my injections, when I don’t have enough energy to do everything I want to do. I don’t shout “Oh joy!” but I don’t cry either. I move forward, and I do it because that’s what I have to do.

I’m also talking about it because I’m here today partly thanks to research. Five years ago, I had a choice between three medications, all injectable. Today, I can travel for months because I’m taking pills. Isn’t that wonderful? And research can be conducted thanks to all the money that is raised, thanks to the wonderful people like Isabelle, Nancy and my mom who meet challenges to raise funds for the cause. All this gives me hope. One day, I’ll be able to say I’m cured.

So thanks to everyone who supports the cause. There are 350,000 causes to support, each one more important than the others. This isn’t an appeal to promote the cause of MS – it’s a big thank-you to everyone who supports it.

In the end, I didn’t take the trip I wanted to go on five years ago. I took the time to get back on my feet. But believe me, I’m catching up! Today, I’m in Asia, my head is full of plans, I’m working to make my dreams a reality, and I’m happy. If I have to be sick, I’ve chosen to be a great sick person, the same way a doctor can be a great doctor or an artist can be a great artist. Illness isn’t the end of everything; it’s just part of life. And life is beautiful.

 

One Response

  1. Simmin says:

    This is a great story – so inspiring.

    I was diagnosed in September 2015 … I’ve been seeing the neuro at the hospital that I first went to when I started experiencing double vision in 2012. After many MRIs that turned up nothing, in 2014 I had a horrible bout of cluster-like headaches – this time the MRI revealed inflammation. Then an evoked potential test – negative. Then another MRI – still inflammation. Then a spinal tap. And then the dreaded diagnosis :-(. Since then, I’ve been trying to get in to the MS Clinic – my doctor has sent in 2 referrals and is now sending in a 3rd. Sounds like a great place … Sounds like they actually listen and they actually know what they’re dealing with. I had another bout of cluster-like headaches in January – the neuro said it had nothing to do with the MS (last time I had these headaches the MRI revealed inflammation). Then in April, I started having difficulty swallowing. Then in May, another flare-up and the double vision hasn’t completely resolved to this day. Then in June, pain shooting down my left leg – sciatica. I’m so scared that if I don’t see an expert soon, I’ll end up disabled.

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