April 6, 2002 

So this is my story.  Correction.  Krys' and Brett’s story.

      Brett and I met in 1990 during a federal leadership campaign. That was the first thing we had in common. Politics. My interest was strictly as a volunteer but Brett’s involvement was more of a possible career enhancement. He would have liked nothing better than to move on through the system to perhaps, one day, becoming a municipal, provincial or federal politician. He might have stopped at being an aide to a political figure, but we’ll never know. I know he would have been good at it…he has the ability to see situations from a lot of different angles and cut to the heart of the matter very quickly.

      Our relationship evolved, despite a “slight” difference in age. I had been married (young), with three grown children, grandchildren making their appearance, while Brett had never married. Our first obstacle was the huge difference in history. I’m sure his friends and family had doubts that we would last, but time worked in our favour, after all, this was hardly the kind of relationship people set out to find or one that families envisioned for their son, daughter, mother, etc. My children didn’t have much of a problem. They trusted my judgement and they only wanted for me to be happy. Although my oldest, very zany, daughter interviewed Brett in the most ridiculous and hilarious fashion. Humour got us through a bad situation when my marriage was breaking up….humour was going to help now.

      Two years after we met, we both finally had the “guts” to admit that we really loved each other. To test this new revelation, we took the next step by moving in together, setting out objectives. The plan was to get married, but we were trying to ensure that there was strength and substance that could endure what most marriages face. We discovered, to our delight that we were having a good time. We shared. This seemed to be the most important thing to both of us. 

    Well, time seems to move at a pace we sometimes don’t seem to notice and other things get in the way of completing plans, but by 1996 we decided to further cement our relationship by buying a house. My daughter was getting married that year and our focus was on her wedding. The house search wasn’t going well. We ran into the typical problems, too expensive, don’t like this area, do we buy new or resale. Barb and John got married in December and in January, suffering from a loss of activity, I went for a drive through some new subdivisions. Lo and behold, success! I came home with house plans and a week later we were home-owners. The house would not be ready for several months, but we bought a house. Scary.

      Brett and I, as part of our future plans, had agreed that what we both wanted personally and for each other, was comfort. We envisioned living in a home, being involved in a community, having neighbours who didn’t move every six months, paying off a mortgage so that we could retire in relative comfort. We were living in an apartment, one of Toronto’s rare finds because it was spacious, but the rent was a killer. We knew we were simply lining a landlord’s pocket and we would never have much to show for our efforts. Rent review was driving us nuts and if we chose to remain renters, in a few years our apartment would cost more than some mortgages.

      We moved into our house in September of 1997 and set about being the typical couple. Decorating, landscaping, and watching our neighbourhood grow. This was happiness! How nice it was to have friends over and not have to worry about parking cars. Entertaining was great with a proper kitchen. Guests could stay overnight … we had a spare bedroom. We could have barbeques. I could plant flowers to my heart’s content. This was what we wanted and needed and we were living part of our dream. We were so caught up in our new found life style that we had set aside getting married.

      In January 1998 Brett broke his Achilles tendon while playing squash. He had surgery, followed by therapy and his foot was healing well. The flexibility was returning and by the summer he was walking with only a tiny limp. He had returned to playing golf and working out at the club, but then we noticed that the limp was returning. It got even worse and he now noticed that he had lost even more flexibility in his ankle. The ankle was now dropping and he was catching his toes. I started nagging. Go see a doctor…something’s wrong. Finally, he contacted the surgeon who had operated on his ankle, who confirmed that the problem was not the tendon and sent him to see a neurologist. CAT scans and MRI’s revealed nothing and I began to worry. This was not good. I actually started hoping that they would find a tumour. At least that was visible and they could operate on it. If nothing showed up on any of the tests, then we were dealing with something invisible and that would be harder to deal with. Desperate thinking on my part, perhaps because that was easier to face than what I was already suspecting. MD, MS or ALS.

      I had, for years, devoted volunteer time to MD and as a result I knew about the disease. I had, as a teen, babysat for a family who had a mentally challenged child with MD, so I was very aware of how debilitating it was. A neighbour had MS, so I had some knowledge there. With these two, I knew there was a degree of hope…not much…but some. I had read about Lou Gehrig and ALS and knew that this would be the worst-case scenario. And there was Sue Rodrigues. I started preparing myself for the worst, hoping that if I was ready for the worst, maybe, just maybe the news would be bad, but not as bad as my head was imagining. Ostrich syndrome.

      I came home from work one day, (this was June/July 2000) and Brett’s first words were not “Hi, honey”. They were, “ I have to talk to you”. Past experience taught me that when Brett started conversations in this fashion, it was bad news. He set aside the preamble and just blurted out that he had ALS. I had forgotten that he had an appointment with the neurologist regarding the results of his tests, who without missing a beat had delivered the news in a very clinical and insensitive fashion. Hearing that, I felt that I had failed him…I should have gone with him. To this day, I don’t know how he managed to drive home. I stopped breathing for the whole time he was telling me about the tests and what the doctor said. The last thing that Brett said was that this disease would get ugly and that he would understand if I wanted to opt out of our relationship. I simply told him that I was not going anywhere. I was not going to give up on what we had built together. Up until now these had been the happiest 10 years of life. I could never walk away and live with myself. The worry would kill me and I knew I had to be the one to care for him as best I could.

     Brett’s diagnosis was further confirmed by Dr. Cashman at Sunnybrook. We found out at that time, that the severe leg cramps he had been experiencing for a number of years were symptoms of ALS. So were the twitches across his stomach, arms and thighs.

      I should mention at this time that earlier that year we had decided that 2000 was our year. We were finally going to get married.

      We cried and talked and cried a lot more. We tried to formulate some plans. We were determined to find out all that we could about the disease…there had to be some hope somewhere. We also decided that we would keep the news to ourselves for some time. We needed time to settle down before our families and friends were told. One thing was absolutely clear. The news was going to come from us. This was going to be difficult and devastating news for everyone and we were convinced that by speaking to everyone personally we could allay some of their discomfort by answering questions. Time was precious and we didn’t want to waste it by constantly correcting erroneous information. We had to continue living in the way we planned for as long as we could, and we couldn’t do that without their help and understanding. We held on to the bad news for almost two months. In that time we had an official engagement. Our families actually witnessed the proposal and it gave them something to focus on. Brett finally told his parents, asking them to please respect our wishes and let us inform the rest of the family in our own way. We took our time, calling or seeing our families and friends at times convenient to us. This was definitely a good way to deal with the news. Each time we spoke to someone, their understanding and support was immediately extended to us and that created a comfort zone for us. 

      It took months for that “kicked in the stomach” feeling to go away. My new job was my saviour. I would cry while driving to work and on the way home. But at work I was too busy and too involved to think. We’re dealing with it as best we can. We try not to look at each day as one day less for Brett, but one day closer to a possible cure.

      Brett has been a trooper. He continues to do what he enjoys as well as he can. He’s involved with promoting awareness of ALS, the ratepayers group in our area, and the provincial riding association. His mobility is still good, although he has braces on both legs and now uses a walker. He has noticed a loss of strength in his back and hands, but you’d never know it with all the time he spends on the computer. His mood changes…not drastically … but he gets very quiet at times. There have been bursts of anger, but who can blame him? I’ve snapped right back that he has every reason to be angry, but why was he saving all of it for me. It wasn’t fair and if he ever wanted to see his favourite dinner again he better check his attitude. Once again, humour wins.

      We’ve started installing help features in our house. Thank goodness I’m good with tools. Grab bars in the shower were a challenge, but I managed to drill through ceramic tile without cracking it. We’re trying to find a way of installing a lift or elevator so stairs are less of an obstacle. There is so much I don’t know, but I imagine that others will offer suggestions as to how they are dealing, or dealt, with certain problems. I work in a corporate world of facts, figures and contracts, so out of habit I organize, create schedules and plans, and work out budgets. What I'm finding frustrating right now is not knowing how we will be able to finance all of Brett’s needs, mortgage, expenses, etc. How do you deal with a loss of income? Mine is certainly not enough to take care of both of us, let alone additional expenses for Brett. Any inside information would be greatly appreciated.

  Krys Yerex

  A note to those of you who are wondering about the wedding.  Did we get married? 

  YOU BETCHA!

  June 30, 2001… and ALS was not invited.