I came into ALS with my eyes wide open.
I lived in Florida at the time and been alone for over six years. My daughter had a computer and she encouraged me to join a pen pals club. So I did. The first person I met was a man from Canada. His wife had died almost a year before, and he had ALS. He wanted pen pals to help pass the time. Since I was just looking for someone to talk to I figured he would be safe, and I wouldn’t have to worry about any romance nonsense. So I dropped him a line and was surprised when I got his response.
He wanted to know if I knew about ALS (which I did not). He asked if I knew what Lou Gehrigs disease was. I responded, wasn’t there a baseball player by that name? So my education started. He told me all about ALS. He sent pamphlets for me to read. He sent me websites to explore.
Well, we became friends and soon we were talking on the phone instead of the computer. Seemed like there wasn’t a day when he didn’t warn me he had ALS. ALS, ALS! I was getting tired of hearing about ALS! My thoughts were that nothing could be that bad. For six months my friend told me how he would fall, how hard it was for him to swallow, how he had to walk with a cane. How he couldn’t sleep, then slept for days, and how the littlest things would tick him off.
I told him when he couldn’t sleep to call me no matter what the time was. Well, we had a lot of 3 and 4am calls. But during those calls my friend started to live again. He told me how his wife had died of cancer; how he fought the government for his diet supplement; how he fought the housing authorities after she died. I knew all about his life and I knew I wanted to be a part of it. I couldn’t believe any man could be so honest and caring.
I have always been a big woman and I couldn’t believe anyone could love me for myself as I had very little self-esteem. I guess in a way we needed each other. If someone tells you that you can’t fall in love without meeting someone face to face, they’re crazy.
I got on the bus and came to Canada. He was waiting for me at the bus station. He stood over 6 feet tall and weighed 120 lbs if he was lucky. But he opened his arms and I gladly walked into them. I was scared to death but I had finally met George! He looked as if he wasn’t going to live for another week, his colour was bad and he was nothing but skin and bones. He told me that the doctor was thinking of putting a feeding tube in if he didn’t gain weight. This was in May.
I soon found out he lived on Ensure. Well, I am from the south and we believe in eating. So I started cooking a big breakfast and would wake him up to eat. I got candy and cookies for him to keep by his bedside since he has a sweet tooth. Then I would make a big supper. He couldn’t handle three good meals day so I was glad when I could get two into him. He tells everyone I have a big stick and make him eat.
The first time he had a mood swing I cried. After it was all over we talked and he explained it wasn’t me but just something he goes through with this disease.
I knew in my heart he was going to ask me to marry him. I also knew that the same old stuff was bothering him. Time…. would he be here tomorrow? Was it fair to me to have to take care of a person with ALS? Well, let me tell you what I told him. None of us knows how much time we have but I believe in living and if you can do that with someone you love it doesn’t matter if you have one day, or one hundred years, as long as you’re happy. I would rather have one minute with George than live a hundred more with out him. Love is stronger than ALS.
Oh, we have our ups and downs, and I get scared when I see changes, but we don’t let ALS rule us. We have found that as long as we face things together we can handle whatever life throws at us. Before we were married we talked about life support, cremation, and the things George wants done when and if he ever gets to the point where he is unable talk. Not very easy things to discuss. But we both know what the other one wants. So on September 15th we were married.
On September 19th we went to the London ALS Clinic for his check up. He always worries about these visits, but the doctor couldn’t get over how much better George looked. He had gained weight and was up to 145 lbs and his breathing had improved. The doctor told him to keep up what ever it was he had been doing. He told the doctor about my big stick and we all had a good laugh.
George is now up to 160 lbs. He still falls and has mood swings and often doesn’t want to eat. He will go for days with almost no sleep then will sleep for days.
Does he take me for granted? Sure he does, and I take him for granted, too. But we are living with ALS, not dieing with it! If I could give anyone advice what would I say? Don’t be scared to live! We don’t know what tomorrow has for us. Do I believe they will find a cure? Yes I do. Will it come in time to help George? Maybe, I certainly hope so.
If I had it to do all over again, would I? You betcha! We are the lucky ones as George’s ALS is the slow kind and every ALS person is different. Some PALS don’t have many years and my heart goes out to them and their CALS.
Even though George isn’t bed-ridden I still need time away from him occasionally and he is the first one to understand that. That was my hang up. If I went out to Bingo then I wasn’t taking care of him, but George realizes we all need a break and it often makes me wonder who is taking care of whom. If there are other CALS out there who need someone to talk to, I can’t tell you what to do, but I sure can listen… and you may contact me at shirley.goodwin@sympatico.ca
I can’t express enough that PALS and CALS should not to be afraid to live each day as fully as possible. George creates silver jewellery and is the web master for this site, he has pen pals both with ALS and without, and he always has time to help a friend. I am very proud of him. He is a fighter and I won’t let him quit.
AN UPDATE:
Update on My Story.
Well it has been 4 years since I wrote my story. A lot of changes and a lot of things I have had to get used to. George and I are still very happily married. We learn everyday how to be a team. A lot of people think ALS does not affect a caregiver. Well, let me tell you they are wrong. Yes it is George who has ALS. But it is me who sees the pain in his legs and feet when they cramp up. It is me who sees him fighting to take a step with a walker. It is me who stays up on those sleepless nights. It is me who sees his body getting weaker. It is me who tries to help him up when he falls.
I had a lady the other day ask me if I had known much about ALS would I still have come to Canada. What a stupid question! You don’t control whom you fall in love with. You don’t jump ship when things start to get rough. In these past few years I have laughed more than in my whole lifetime.
I have learned the true meaning of love. I have grown as a person. All because of this remarkable man I am married to. Oh we have our spats… about once a year just to liven up things. But we have learned how to communicate. Even if it takes a few days we manage to talk things out. I think the hardest thing is when George gets in to a mood and he just wants to be alone. So I give him space. Then he feels bad about shutting me out. But this is all old hat now.
I will not lie and say it is easy to watch your husband change right in front of your eyes. There are nights when he is asleep I have a good cry. And on really bad days when I let fear step in and I feel I am going off the deep end I write a letter to a good friend up north who lost his wife to ALS. HE HAS THE SOFTEST BOOTS… to give me the kick in backside when I need it and I know I am not alone in this fight with ALS. By him sharing his dealings with ALS with me I get the encouragement I need. Also I get support from my group. They are wonderful. They are always there when one of us needs some encouragement.
This past year George has started to use a walker. He cannot stand up long enough to shave or to use the bathroom. His legs are weaker. He has a pole that helps him turn over and to get out of bed. We now have an intercom system because his voice is getting weaker. His back is giving him a lot of pain which makes it difficult for him to sit very long. He has had two allergic reactions to medicine he has taken for years. On one of these attacks we ended up at the ER. He can no longer wear jeans or any pants that don’t have an elastic waste band. Pullover shirts are a must. He is “banking” his voice and using Dragon software to help him write emails.
We have also grown closer. He said he feels bad having to depend on me for so much. He doesn’t stop to think how much I depend on him. He is my voice of reason. He is the first one to tell me when I am wrong (which is hardly ever) and the first to tell me I am right (except if it pertains to him). He makes me laugh everyday. I have just about got him trained in the “I love you” department.
What does 2005 have in store for us? Who knows!
What I do know is that we will face it together.
Shirley Goodwin
"The person who has no imagination has no wings." Muhammad Ali
