Quite a while back, I had a special and important friend ask me if I really thought that any life, no matter how limited, or pain filled, or difficult, was worth, well - life.
And that really set me to thinking about life and why it may be or not be valuable. In other words, what makes existing "worth it."
First of all, to my friend, in case you are reading this: please take no offense that I have put your question (paraphrased a bit) in here. Also, let me say to everyone that I myself struggle every time I have to see Joel suffer. I have, at times, almost wished he would pass away so that the suffering could end, and I can't help but feel that it is only the "good times" that make it all worth it.
So, I hope you will understand these musings in that light. My thoughts are, again, not meant to criticise anyone who has made any hard decisions about turning off ventilators or administering CPR or anything like that. There may be times we might need to let go, so please do not think I would ever look down on anyone for those tough decisions. Hey, I've been there myself, and I will be again, and I understand about the agony in the heart about it all.
This is meant to be an encouragement, as my musings brought me encouragement, even knowing that those evil days of hard decisions loom up. I just wanted to explain clearly why I think that Joel's life is worth it. Why I am glad that he existed.
Another long introduction, so let me get down to it all.
Maslow, a psychologist, came up with something called "Maslow's Hierarchy" which I studied when I was training to become a teacher. He made a "pyramid" of needs, putting the most important on the bottom and working his way up. My apologies to Maslow, as I am probably oversimplifying the explanation, due to the limitations of my blog.
My point is that I disagree with his order of needs. Of course, from the point of view of what is necessary to actually sustain life in an immediate sense, he was right. Food and water and all those things come before the relationships that he was also affirming were needs. Love, intimacy and friendship, etc.
Still, it seems to me that it is a bit "upside down." After all, without the love and intimacy and friendship, would we really want to live anymore? I mean, I think if I had to choose between slow starvation with my loved ones present, or living completely alone for the rest of my life with mountains of food... well, I am pretty sure what I would choose. I'm not saying pain can't beat you down completely and make you do crazy stuff, I have been in labour, and I know why torture is so effective. I'm just saying that there have been many examples of people who gave their lives for those they loved, which makes me think that for some of us, at least, we recognize that what truly gives value to the lives we have, is the love we give and receive.
Which is what I wanted to talk about in regards to Joel. I was thinking very hard about it all, wondering if I could truly say that Joel's life had been "worth it." Both for him, and for me.
And it all depends, really, on what you think life is all about. If you think that it is very important to "experience" things, then no. If you think that one of the top goals of life is to be comfortable and enjoy the "good things" of life, like mashed potatoes and gravy, fine paintings, days at the spa, scuba diving, movies with popcorn, driving in a car with the top down, making love, etc, etc, etc, then a big resounding "NO." I mean, Joel can't do any of that, so yeah, his life would seem pretty, well, useless to him if you think that sort of stuff really important.
Or to those who would say that your life is worth something only if you can contribute to society. Meaning financially and practically. By doing something for society, like a doctor, or teacher, or even a garbage collector.
But I can't agree with that. I can't agree to it at all.
I would have to say, to quote a book that I can no longer remember the title of, that "personal relationships are the real life." (No, this book was not some self help book. It was a novel, and I think it was by the same author as Howard's End, but I am no longer sure...)
What I mean to say is that what I believe makes life worth being alive for is simply this: Being able to love, and being loved by others. Joel's life has meaning and value for two reasons. The first one is that he can love me, and his daddy, and his brother, and etc. He gives us love. And we accepted it with gladness. It makes our hearts sing.
And also, he is someone for us to love. He is important, it was important that he should exist, for us to love him. I don't know how else to explain what I mean, other than to say that by loving Joel, my life has been enriched. It has been given new and beautiful meanings. I am a better person, even a more fulfilled person, and in ways that only Joel's existence could bring about.
And I know one day, if you meet him in heaven, and ask him if it was worth it, all the suffering and pain he went through, he will say a resounding "YES." He will say it was worth it all because he loves his mommy and daddy and because of that love he would do it all again.
Now you likely think that I have left God out of this, for this one time. Surely you don't know me well if you think that for one moment.
If you are at all familiar with Christianity, you have heard this: "man's chief end is to glorify God." I'm not going to take it upon myself to exactly disagree with that... but sometimes it seems to me to be a bit "upside down." Like Maslow's Hierarchy. For the first and greatest commandment is to "love the Lord your God with all your heart, with all your soul, and with all your might."
If you read the New Testament, you will find words about loving God and loving others all over it. Like a forest in the fall, covered everywhere in leaves above and below, you can not get away from it. Love God. Love each other.
Joel's life has value because I love him. He is important to his mom, and his love is important to her. There is a value here, but it depends on me. On my whims, or my existence.
So let me assure you that I am sure that life has a greater value than what other people put on it, on whether you find you are greatly loved, or greatly neglected or forgotten. If Joel's mom was incapable of love, or unwilling to face the pain and abandoned him, it would not negate the importance of his life.
Joel's life, and my life, and your life, all are important to God. No matter how anyone else looks at your human life, whether they find you lovely and useful, or whether they feel your existence is a waste, or not worth the expense, or pain, or whatever it might be. Your existence still has value to God. Just like Joel's.
I'm going to repeat myself here several times, something my husband would point out to me as beating a dead horse. I can't help it, I just can't say it enough.
God waits to be our Father. He waits to hold us in His arms, and comfort us. He values us, and we are valuable because God loves us, and our love is important to Him. This is what gives our lives a supreme kind of importance. Our value is immutable, because God is immutable. God wants us to exist, because He loves us, and wants us to love Him back.
So I know that despite all the pain, all the suffering, all the deep hurts and crying both for Joel and for me, I am glad that he existed. His life is a gift to me. His existence, even through all that he has lost, and all that he must suffer, is a beautiful gift to me. I am grateful to God for Joel And I am glad to know that Joel's life is so valuable and beautiful to God. It does not depend on what Joel will experience or accomplish. Joel is loved.
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