Wednesday, May 28, 2008
On the side of this blog is a quote I was kindly allowed to put up by the author:
Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them.
The reason this particular quote resonated with me is because on the day of my diagnosis and admission to hospital for treatment my main worry (actually, my only worry) was "how are my parents going to deal with this". My mom, I suspect like most moms, is something of a worry-wart. It was bad enough going off to college at 17 in Nova Scotia when my parents were living in South Korea. I knew they were worrying about me. I came down with mono during the second semester but didn't tell them until I was in recovery mode, because if they knew how sick I had been, they'd have been on the first plane, train, or automobile that would get them to me. Two days of travel to watch me throw up? I don't think so.
I honestly wasn't concerned about what MS was going to do to me. I already had known a couple of people with MS and they seemed to be OK. One gal had terrible tremors but she led a very normal life, married with kids. The other guy was somewhat disabled and had a scooter and had taken early retirement but he seemed to be coping well enough. And I literally figured that if I lost the use of the right side of my body permanently, then so be it, I'll get really good at typing with my left hand and start wearing velcro sneakers.
I was concerned about my parents. Firstly, I thought, Mom will blame herself. You know, "I should have eaten better when I was pregnant with you", "We should have insisted they remove your tonsils at 4 instead of waiting til you were 10, then you wouldn't have had all those infections growing up", "I shouldn't have let you eat that bug when you were 2". Then I thought, they're going to be calculating what my expenses are going to be as a disabled person and try to put together some sort of trust fund when they should spend their money on themselves in retirement. (They were just approaching retirement at the time). And then I thought they'll never sleep soundly again.
Mom and Dad were a little freaked out, as any parent would be. But after I called them, they showed up in the hospital to see me an hour later, and seemed put together. Of course, I was joking with the staff and eavesdropping on other patients' conversations in the ER and wondering how long I'd be in the hospital. The Parental Units put on a very brave face. When the admitting nurse came to fill out some forms she asked me how long I'd had MS. I looked at my watch and said, "About an hour and a half". She laughed, my folks didn't. "You were just diagnosed then", she said, and added, "I've had it for 5 years". I just looked at Mom and smiled.
As long as I could show my folks that there was nothing I was worried about, then there was no reason for them to be worried. I was very excited about being in a drug study, but they didn't want me possibly to be on placebo and maybe get worse. I couldn't discuss how excited I was about the whole process I was going through and the discoveries I was making about my brain. This was a cool factor of 10 in my mind (I really am a big geek- every time I have a cold I am amazed at how the body becomes a snot factory overnight; where does all that stuff come from? Intestinal upset? I'm wondering about what flora and fauna in my guts are working over time). Was I going to say that out loud? No freakin' way. Mom and Dad would have asked for a psyche consult and their worry would have just increased. So I kept most of these thoughts to myself for 10 years.
Since my diagnosis, some of my excitement has spilled out. The discoveries I'm making, things I'm reading, the professional people I speak to all inspire me to share my knowledge with my folks. And my mom is quick to share with me things she comes across, too. If I were to tell my mom that my MS is cool, she'd nod her head and say, "I know" because she knows what I mean. Not that MS is cool, it's not, but the experiences I've had and continue to have because of MS are cool. Actually, I'm sure my mom knows everything I think and feel. I'd put money on it. But I still don't want her to worry any more than she should, so some things are not shared.
Since day one, I really haven't had any bad down times because of the MS. I have had a few moments or at most an evening of tears and anger, but I'm fine. Really. Sometimes I'm so tired I just crash right after work, or some weekends that I spend entirely in my pajamas. I'm lucky. Very lucky. Those times that I'm tired, I will say so and people let me be. A little rest and I'm ready to go again.
I spoke with a neighbour recently, a very nice, semi-retired widower. He told me about his wife's battle with cancer and how she carried on as normal as long as possible. She maintained a strength and positive attitude until the very end that he marvelled at. "She had cancer! She was dying! She was suffering! It was hard on me, but it was much worse for her", he told me. "How could she have been smiling when things were going to end for her?" I told him that it may not have been as hard on her physically as he thought. "What's harder perhaps is worrying about how your loved ones will react to the news or the event of a death. She was probably concerned that you'd have a hard time dealing with her passing, so to help ease your mind, she put on a happy face". And I told him that I maintain a positive attitude because I want that reflected back on me.
If I lead by example, others will follow. I hope.