No matter how many times I have seen the movie Cast Away, I always find myself watching the last scene over and over, trying to determine which road Tom Hanks' character takes. He is standing at a crossroads, looking around, unsure of where to go, not knowing the best road to take. This indecision comes after finally being rescued from a deserted island he was stranded on for years. Like the Cast Away character, Chuck Noland, Keith and I have found ourselves standing at a crossroads, unsure which path to take.
In the four years since Keith's diagnosis, we have each found ourselves feeling as if we were alone, stranded on a deserted island. We say we are in this together, but in reality we can never fully understand what the other is feeling. I will never know how he feels as his body deteriorates, slowly becoming more stiff, slow and shaky. I will never know the heartache and frustration of a slipping memory or of time lost with my children. On the other hand, Keith will never know what I go through as I watch this disease slowly ravage his body, stealing all those little pieces that make up Keith. No matter how often we network with others, regardless of all the young-onset PWP we have become friends with, and despite all the PD support groups we have attended, it is still so easy to feel alone, stranded on a remote island named Parkinson.
This past year has been our awakening. We determined individually and together that we had enough resources to put together a raft, climb aboard, and sail off this lonely island. We knew the waters would be rough. We knew it would be dangerous; the chance of drowning in a vast sea of financial insecurity, medicinal side effects, physical disability, memory loss, and frustration was high. It was risky, no doubt, but we were determined to get off that island, and sink or swim, or even doggy paddle, we were going to get back home.
As it happened, the trip off the island was the easy part. I wouldn't exactly call it smooth sailing, but we arrived at our destination in one piece, all parts in working order, a little weary but content. Now, like Chuck Noland in Cast Away, we find ourselves standing at a crossroads unsure of which road to take. We have decisions to make about how to proceed with PD that will affect each member of our family. In the past Keith and I often let our emotions, namely fear, dictate what the outcome of our decisions were. Not any more. That's why we've decided on a counselor from here on out. Not a marriage counselor, but someone who specializes in neurological disorders and the issues they entail. Most of our interaction with the counselor will be as a couple, though I am sure there will be times when Keith and I will need to speak privately to him/her. I have been burned out, Keith is frustrated, there is potential for resentments to build on both sides, all of which we want to avoid. As we stand in the crossroads of PD, we have recognized that we need help in our decision making. We are no longer stranded on a deserted island, nor do we wish to return to it, so it only makes sense that we would surround ourselves with people we know to be supportive, understanding and helpful, counselors included. Our hope is that a counselor will help us cast away all those fears and doubts surrounding PD, and help us determine which is the best direction our family needs to turn to.
Thursday, November 4, 2010
Let's Get it Done, Folks!
Reminder: all proceeds from LIFE WITH SHAKY during the months of October thru December are donated to the APDA!
Sales from LIFE WITH SHAKY have been good this fall, so let's keep it going! We want a nice, fat check to send to the APDA this coming January.
Bumper stickers and canvas totes make nice holiday gifts, as do our selection of coffee mugs!
Shop LIFE WITH SHAKY today!
Sales from LIFE WITH SHAKY have been good this fall, so let's keep it going! We want a nice, fat check to send to the APDA this coming January.
Bumper stickers and canvas totes make nice holiday gifts, as do our selection of coffee mugs!
Shop LIFE WITH SHAKY today!
Wednesday, October 20, 2010
Truth or Dare?
We've all played the game of Truth or Dare. Perhaps as a child your buddy dared you to don a pillowcase and jump from the shed roof as Superman. Maybe in college you spilled the truth about a prior lover or a secret crush. The fact is, we all play Truth or Dare on a regular basis, though usually, unlike the childhood version, no one is the wiser. Do I dare allow myself to fall in love with this person? Do I dare quit this horrible, dead-end job? Often times, the most difficult aspects of Truth or Dare are the truths we must speak to ourselves.
I have dared myself to tell the truth, to finally be honest about this blog, my marriage, my family, PD. For the past year I have been trying to determine the direction I want this blog to take. I have only posted often enough to keep the few readers I have interested until I made a decision: keep the blog up and begin writing again or shut the entire thing down and walk away. I've decided to keep going, which brings me to truth numero uno:
Truth 1. I have suffered from severe PD burn out, causing me to walk away from nearly all PD related activities, including this blog. Some time ago, after nearly two years of battling Keith over whether or not to sell our house and his lack of concern for his health, I made the decision that I would no longer take it upon myself to initiate any PD related activities. That included support groups, fundraising, blogging, taking that extra step in meal preparation to ensure the best nutrition, advocating for Keith's health. I stepped away from all of it. No, that's entirely true either - in reality I ran away, as fast as I could go. I was exhausted physically and emotionally. I was drained of all my desire to do all I could for my husband. My attitude became if he doesn't care, then neither do I. Unfortunately, somewhere between letting go of being the nurturing, supportive, advocating wife I liked to be and trying to become the nurturing, supportive, advocating wife Keith wanted me to be, I lost myself. I lost the one thing I thought most valuable to a wife of a PWP - compassion. Compassion, the very thing that I naively assumed would be just as valuable to Keith, became a driving wedge between us. But to take away that which sustains me is to take away a huge part of who I am. If I can't dote on, fret over and nurture the one I love, but instead am expected to sit back and watch a slow and steady decline, what else can I do? Apparently, I can internalize, and I can do it very well. Burn out was not simply a possibility, but a certainty.
Truth 2. I have been afraid of what the nay-sayers will say. When you spend years thumbing your nose at all those individuals who tell you over and over again that you are making a mistake, it's hard to admit that you're now struggling. I do not, in any way, shape, or form, feel that I made a mistake in marrying Keith and having children with him. I'm just not up for all the I told you so's. Yeah, it's hard loving a man with PD. It's even more difficult when you have young children together. PD is a horrid disease, not one I'd wish on my worst enemy, but trying to make me feel as if I've done something wrong is not at all helpful. I have no intention of leaving Keith, so really, what is the point?
Truth 3. Nay-sayers: beware! From this point forward, I will only surround myself with positive influences. Looking into the future, I am all too aware of how difficult life is going to get if this disease progresses much further. I simply do not have the time or the energy to deal with your rude comments and hateful attitudes. I won't name names, but you know who you are. You are those folks who deem it necessary to repeatedly say to Keith and I, regarding most every decision we make, Why would you do a stupid thing like that? or What the hell is wrong with you? While I respect every one's right to their own opinion, I am the one raising a family alongside a PWP, not you. There is no room for your criticism, doom and gloom.
Truth 4. This is much harder than I thought it was going to be. I said from the get-go that I could handle the physical deterioration, but the mental part would do me in. It has definitely stomped all over me. I wasn't prepared for this. Dr. Wooten warned me about apathy, possible depression, personality changes, but not this. Keith has been having some memory issues, as well as problems with communication. Throw in the fact that we are still trying to recover from the damage Mirapex caused, and it's been rough going for the past year. Not at all what I expected.
Truth 5. I need to show my husband more often how much I love him. In spite of it all, Keith is still and will always be the love of my life. I am not going anywhere, and I'm pretty sure he isn't either. With all the trouble PD and our differences have caused, we still have a happy marriage. We love our kids, we are happy with our choices, and we are looking forward to what the next ten years will bring. Having said that, I do realize that I have a tendency to let life get in the way of showing my love. Saying it isn't always enough.
The truth is, I had to dare myself to be honest with me in order to begin the journey back to me. I'm coming around, but I think next time I'll stick with a nice game of checkers and leave Truth or Dare to the college kids.
I have dared myself to tell the truth, to finally be honest about this blog, my marriage, my family, PD. For the past year I have been trying to determine the direction I want this blog to take. I have only posted often enough to keep the few readers I have interested until I made a decision: keep the blog up and begin writing again or shut the entire thing down and walk away. I've decided to keep going, which brings me to truth numero uno:
Truth 1. I have suffered from severe PD burn out, causing me to walk away from nearly all PD related activities, including this blog. Some time ago, after nearly two years of battling Keith over whether or not to sell our house and his lack of concern for his health, I made the decision that I would no longer take it upon myself to initiate any PD related activities. That included support groups, fundraising, blogging, taking that extra step in meal preparation to ensure the best nutrition, advocating for Keith's health. I stepped away from all of it. No, that's entirely true either - in reality I ran away, as fast as I could go. I was exhausted physically and emotionally. I was drained of all my desire to do all I could for my husband. My attitude became if he doesn't care, then neither do I. Unfortunately, somewhere between letting go of being the nurturing, supportive, advocating wife I liked to be and trying to become the nurturing, supportive, advocating wife Keith wanted me to be, I lost myself. I lost the one thing I thought most valuable to a wife of a PWP - compassion. Compassion, the very thing that I naively assumed would be just as valuable to Keith, became a driving wedge between us. But to take away that which sustains me is to take away a huge part of who I am. If I can't dote on, fret over and nurture the one I love, but instead am expected to sit back and watch a slow and steady decline, what else can I do? Apparently, I can internalize, and I can do it very well. Burn out was not simply a possibility, but a certainty.
Truth 2. I have been afraid of what the nay-sayers will say. When you spend years thumbing your nose at all those individuals who tell you over and over again that you are making a mistake, it's hard to admit that you're now struggling. I do not, in any way, shape, or form, feel that I made a mistake in marrying Keith and having children with him. I'm just not up for all the I told you so's. Yeah, it's hard loving a man with PD. It's even more difficult when you have young children together. PD is a horrid disease, not one I'd wish on my worst enemy, but trying to make me feel as if I've done something wrong is not at all helpful. I have no intention of leaving Keith, so really, what is the point?
Truth 3. Nay-sayers: beware! From this point forward, I will only surround myself with positive influences. Looking into the future, I am all too aware of how difficult life is going to get if this disease progresses much further. I simply do not have the time or the energy to deal with your rude comments and hateful attitudes. I won't name names, but you know who you are. You are those folks who deem it necessary to repeatedly say to Keith and I, regarding most every decision we make, Why would you do a stupid thing like that? or What the hell is wrong with you? While I respect every one's right to their own opinion, I am the one raising a family alongside a PWP, not you. There is no room for your criticism, doom and gloom.
Truth 4. This is much harder than I thought it was going to be. I said from the get-go that I could handle the physical deterioration, but the mental part would do me in. It has definitely stomped all over me. I wasn't prepared for this. Dr. Wooten warned me about apathy, possible depression, personality changes, but not this. Keith has been having some memory issues, as well as problems with communication. Throw in the fact that we are still trying to recover from the damage Mirapex caused, and it's been rough going for the past year. Not at all what I expected.
Truth 5. I need to show my husband more often how much I love him. In spite of it all, Keith is still and will always be the love of my life. I am not going anywhere, and I'm pretty sure he isn't either. With all the trouble PD and our differences have caused, we still have a happy marriage. We love our kids, we are happy with our choices, and we are looking forward to what the next ten years will bring. Having said that, I do realize that I have a tendency to let life get in the way of showing my love. Saying it isn't always enough.
The truth is, I had to dare myself to be honest with me in order to begin the journey back to me. I'm coming around, but I think next time I'll stick with a nice game of checkers and leave Truth or Dare to the college kids.
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