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.
S.
This is the fourth in a series of articles I've written for Atlantic Pedaler E-zine about biking with MS.
Getting to the Bottom of Biking
Because of unrelated health issues, I have been unable to ride my bike since April 30th. Keeping my fingers crossed, I'm going to try a little the first week of June (maybe even as you are reading this) to get ready for the MS Bike Tour. I have been doing a little prep work in advance of getting on the bike, mainly gardening with lots of up and downs, and stairs.
I have mentioned that before I even began riding I spent two months at the gym (makes me sound sooooo athletic, doesn't it?). My reasoning was that I wanted to be able to get on the bike and not be discouraged by lack of physical fitness. And to a degree it worked. I was able to go much farther than I thought I'd be able. The only problem was the seat. I wanted to be comfortable on a bike seat for long periods of time, and at my leisurely pace a regular bike seat just wasn't going to cut it.
The search began for something like a tractor seat. I'm not kidding, either. That's how I phrased it when I went in to Sport Wheels in Lower Sackville. The owner thought about it for a minute, then said, "I've got just the thing". And he came back with the biggest bike seat I've ever seen. It's about a foot across. He told me he got one for his mom's exercise bike. So now I'm feeling a little bit old and decrepit, but I bought it and put it on the bike. Simply put, it is one of the most comfortable seats I've ever sat on. And I don't care how silly it looks (and it does). It generates a lot of interest by on-lookers, I've gotten a few smiles from people, and few expressions of interest in buying it. I often offer to let folks try sitting on it. One day while taking the bike off the car 3 boys came by on skateboards. "Whoa, dudes.....look at the pimped out bike!" At least a few preteens thought I was cool.
I think I understand the reasoning and the physics behind some of those extraordinary bike seats I've seen, you know the ones with holes in them or specially designed to accomodate male genitalia, or the one with the two teeny tiny little pads for a teeny tiny little butt. And I know that speed demons spend little time resting on their laurels, so to speak. I can't imagine getting on one of those things. My giant seat did the trick for my first year of riding. I got a fairly large gel seat for last year's bike tour on my hybrid, but my tractor seat will stay on the mountain bike. The whole point of being more comfortable was to stay longer on the bike and therefore get more exercise. It worked! Someday, I may have a bike built for speed and one of those high tech seats, but I'm no Lance Armstrong and I'm not in a race. I just want to stay upright, finish if I can, and raise money for a worthy cause.
S.
There are plenty of circumstances of serendipity in the natural world and in our lives. I've blogged about coincidence and synchronicity before, but a recent news release has got me thinking about it again and the added feature of serendipity. This time it's how it relates to medicine.
A lot of discoveries are made by "accident". Some of the more famous ones include X-rays, pennicillan, and LSD.
A few years ago I had the opportunity to attend an information breakfast sponsored by the MS Society. The guest speaker was Dr. Mark Freedman (a great speaker), who is an MS researcher in Ottawa and is leading an ongoing study which intended to observe how MS begins in the first place. Sadly the experiment was a failure. He talked about the study at the breakfast and was very excited about its failure. Just recently Dr. Freedman addressed a stem cell seminar at the US Institutes of Health. After 7 years, the researchers still don't know what they had set out to know. What they did was chemically destroy the immune systems of MS patients. Then the patients received a transplant of their own stem cells which had been harvested in the weeks before destruction. The basic hypothesis was that the immune system would be rebooted and MS relapses would occur, allowing the researchers to watch the disease evolve. But it hasn't happened. Actually, none of the 17 patients have exhibited any relapses.
A very nice failure. 7 years and no relapses. Wait a minute...these were folks with pretty debilitating MS, the disease was progressing, and it suddenly stops? Repair has been observed and no new lesions are presenting. Now before you get all excited about a possible cure, this is an ongoing study with only 17 patients. The treatment involves one similar to what leukemia patients go through, with chemo to destroy their own bone marrow before receiving a transplant. In fact, one person in this study died after the chemo and before he could receive his own stem cells back and all patients in the study knew this was a possible outcome. All the patients must be extremely brave to have put themselves on the line the way they have.
So now the researchers are focusing their studies on if this is an effective way to stop or slow MS.
Could stem cell replacement or transplant be a cure for MS? It's a very definite possiblity right now. But it's still a long way off to treat the disease. The docs still don't know how MS evolves, but the failure of the study may have led to an accidental discovery. Serendipity in action. Cool.
S.
The Carnival of MS Bloggers is up at Lisa's. Click on the Carnival button to the right or click here to read the latest entries, including a couple of new folks. Welcome to Brian and MissBizz!
S.
Just came back from helping 5000 trout get into their new homes. As a member of the Sackville Rivers Association, I get to do fun stuff like that. The truck met us and off we went to 4 different lakes and the Sackville River. 5 stops altogether. The truck driver would scoop out a net of fish, then we'd pass it like a bucket brigade to get the squirming mass to its new home. Really cool.
A couple of the spots we went to were a little warmer than I expected and the fish are sometimes a little stunned when they're released so we'd scoop one or two up and force them through the water to get the water forced over their gills and that would wake 'em up a little bit. And since they'd been raised in a hatchery, they seemed to have little fear of people. As they acclimatize they act more and more like regular fish and scoot away.
At the last stop I was the first one in the water's edge and so startled a whole slew of tadpoles.....soon to be trout supper....life goes on.
On the home front, still no maternity wing in the aquarium. When the happy day arrives I can see me passing out cigars:"Here, have a cigar, it's a girl. And a boy, and another boy, and another girl....."
S.
A long time ago, in a galaxy very far away...no wait, it was in this galaxy...our earth began to form. About 4,500 million years ago. Several million years later, continents had begun to develop, bits of the earth were located in very strange places from where we know them now. Nova Scotia was once located pretty much at the South Pole. (Last winter, it only felt like we were still there) A lot has happened during the past kajillion years that have shaped the earth and made it was it is today.
As a result of the earth's activities, Nova Scotia has some really interesting geologic and geographic features. One of them is the Bay of Fundy, which has the highest recorded tides in the world. It fills and empties like a giant bathtub. With whales. And every time the tide goes out it takes some rock and sediment with it revealing the history of the earth, unearthing (so to speak) a fossil record of what life was like on this planet before I was even a thought in God's mind.
Last weekend, the Wookie and I traveled to a couple of museums on the Fundy shore that focus specifically on geology and fossils. It involved driving a couple of hours from home so we stayed overnight (at a Bed and Breakfast called Gemstow's -thanks, Gerry!) in a small community called Five Islands, named for the occurrence of 5 islands 1-2 kilometres off shore. Each of the islands has its own name, but one in particular stands out. It was bought in the mid 90s by an American lawyer and businessman by the name of Dick Lemon. It is now known as Dick's Island by the locals. When he bought the island it was uninhabited. He has built an eco-friendly mini resort. When I say mini, I mean mini. No pool, spa, or even room service. In fact you do your own housekeeping and cooking, but they get you to the island and back. You can read about it here. I'm impressed with Mr. Lemon and his "resort".
Dick's Island is the one in the middle of the above pic. Click on it to get a better look.Last year, Mr. Lemon began a fun-run fundraiser for the community. It's called "Not Since Moses" and involves walking or running to and between the islands at low tide. Imagine running on the ocean floor for two kilometres before getting your feet wet! Last year the runs began and ended on the mainland, but this year, because of tide times, the runners will begin the 5 and 10k runs from the mainland and end on the island. There won't be time for all of the walkers to do the whole route before the tide comes in. The participants will be brought back to the mainland by boat at high tide, just in time for supper and a dance at the 5 Islands community Fire Hall. If the Wookie and I hadn't already had plans for that weekend (the MS Bike Tour in New Brunswick) we would have volunteered for the run. What fun!!
I mention the Dick's Island and the Not Since Moses because it so easily demonstrates what a unique feature the Bay of Fundy is to Nova Scotia. Imagine walking to an island. Another interesting thing about the weekend was visiting the Fundy Geological Museum where there are windows into the labs for visitors to observe the scientists at work, cleaning dirt and stone from fossils recovered in the area. The picture I have included is a vial of earth removed from a fossilized bone of a prosauropod, Canada's oldest dinosaur, found right here. Cool, eh? OK, shaky photo, but you get the idea.
We also visited the new Joggins Fossil Museum. Joggins is a vitally important part of the story of the earth's history. the fossil records are abundant and revealed every day. A few of the discoveries include the world's oldest land snail, a 3 foot long salamander-like amphibian and an arthropod similar to today's "sow bug" or wood louse 6 feet long. That creature may have had more than 30 pairs of legs.....
There were a pile of stops along the way and plenty of places we wanted to stop in to but just didn't have the time. Just means we have to go back.
S.
The Wookie and I had a night away on Saturday night. We visited a part of the province I'm not as familiar with but would like to be. So I'm busy compiling info about it and preparing a post about it.
While we were gone, I figured my menagerie would be fine for a night. I thought wrong apparently as the caddisfly larvae was gone. Disappeared. Not in the aquarium. Not visible in the apartment. Did my at-least-3-weeks-pregnant guppy feeder fish feed on it? The other two guppies perhaps? Did it rise to the surface of the tank, spread its wings, then fly off? I haven't a clue....
The very pregnant guppy is still pregnant. Or really fat. She chases the other two around the tank with no provocation. I suspect she's getting antsy. And speaking of ants, tune in to PBS' Nova this week about E.O. Wilson, Lord of the Ants. This guy's experiences and ideas about insects and life in general are extraordinary. So nobody call me tomorrow night.
S.
