What Defines You?
By Pamme Boutsellis
What defines you?
What would you say if you were asked this question, and what does your response say about you?
It says a lot. For those of us who deal with a chronic illness on a daily basis, whether as a caregiver or one with the illness, this question becomes even more important. What defines you? Have you become the sum of your illness or role as a caregiver, or have you allowed the illness to just be a part of your life – one more component in what is essentially a full life?
Sure, easy for me to say, you might be thinking. I do not have Parkinson’s disease, but I have lived with it for almost twelve years in the role of supportive spouse, eventually leading to that of a harried caregiver. I made a choice early on not to be a victim, not to let our lives be overwhelmed by this tough change in our life. It was a choice. This illness would not define what our lives could be.
So we carried on, and did the best we could to move forward and keep our perspective. Our lives were nearly shattered by the discovery that I had non-Hodgkins lymphoma almost five years ago. Again, I had the choice of allowing an illness to define who I was and what my life would be like. I chose life and all it had to offer, good and bad. I learned very quickly that my reactions would be mirrored in the faces of my children. The impact this illness had on how I defined myself could be positive or negative. I opted for the positive.
So this is the question and perhaps the challenge we all face each day. What defines you, or better yet, what will you allow to define you? When you figure that out, think about what elements have led you to that conclusion. What happens when the mix changes or varies? Who will you be then? Will you continue to grow in a positive way or will you find yourself lost in search of who you now are?
If the sum of your life is your role as a caregiver, who are you when that role is no longer there? Have you continued to have outside interests, hobbies and most importantly, friendships and relationships? How much of your life is wrapped up in caring for someone else, exclusive of your own needs and desires?
If it is you that is ill, how much of your life is all about you? Do you think often of others, and how your actions and illness affect their lives as well? Do you rail at the gods and feel it is just not fair that you have to suffer this injustice? On the other hand, have you accepted this illness with dignity and strive to work toward the best health you can have? You can’t control your illness, but you can control your reaction to it. We all have a choice.
Face it. Life is not fair. We all have so much to be grateful for, though. Our reactions to the things that happen to us, both good and bad, define who we really are and what we project to others. We may not be in control of what life deals us, but we can work on how we allow these things to define us. Give it some thought. It might change your life, for the better.
It's been an ugly and frustrating week all around. There's been a nasty fight on the bulletin board, during which two of my friends jumped in with both feet and showed their shining defiance of this rotten disease to the world, defending the honor of all of us who refuse to define our lives by PD. Bless their hearts... they took the words not just out of my mouth but out of my heart. Our little household is still undergoing a boatload of troubles, with physical illness and topsy-turvy teenage angst, and topped off by the weather woes, we're sure ready for some smooth sailing.
But through it all, one thing shines through: we are SO glad to be alive. To have the kids congregate on the big master bed in the evening during one of our 'pouring out our hearts' sessions. To be able to fall into that same bed late at night and listen to the person you love the most in the whole universe breathe in and breathe out there on the pillow six inches from your ear (even when he has a cold and is snuffy!). To know that there's a safe place to go when life gets too overwhelming and we need a haven: HOME.
We have so much to be thankful for; so much to LIVE for. This illness does not define us. Our love defines us. THAT'S what I want to be remembered by.
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