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.
2 comments:
I wish I had time tonight to think this comment through with the thoroughness it deserves, but I'm exhausted.
It's ironic that you posted this tonight. I've been at burnout stage for the last few weeks, and it's very hard to admit. You are very brave, and I want you to know you aren't alone, and that not all people out there would condemn you for feeling overwhelmed, even though you and I took on these things knowingly.
It's been very hard for me to come to the admission that it does not make me love him any less for the fact that sometimes the stress of life, PD, work, family, and all of the rest of things sometimes gets me down. I have beat myself up over the fact that I have snapped at him sometimes when he doesn't feel good. I feel like a monster. The truth is that though we can intellecually understand what is coming, none of us can accurately predict what other straws are going to be laid on our backs at the same time. I knew I could handle the PD. I didn't know I was going to get that, kids with surgery, kids with blood clots, kids going off to college, his meningitis, his concussion, his six months worth of headaches, the neurologist quitting on us, and all hell breaking loose at work, all at the same time. And that's only been 2010.
I hear you. You are only one person. I understand. You are not a bad person for being tired... for coming to the point where you have to step back for a while and say "Enough... I can not cope with any more at this moment". That is self preservation. Take that time. Keep loving him, but love yourself too. Above all, give yourself permission to not be everything to everyone at once. It's enough to love. God knows we have to seize that time while we can.
To Hades with the naysayers. I know that if those people heard me say that I was tired and frustrated, that they'd be all over me too. "We told you so. You're crazy... what were you thinking?" I was thinking what I'm thinking now - that I knew it wasn't going to be easy. I knew I was going to be frustrated. I knew I was going to cry - more than once. I also knew that it was going to be worth any price I had do pay to be here. And it is. I would not trade this life for anything.
I would trade my right arm to make his PD go away, though.
Michelle, thank you so much. That comment was exactly what I needed to hear. You are a kindred spirit and a true friend!
It too beat myself up over normal reactions. I thought mommy guilt was bad! That's nothing compared PD guilt!
Knowing what was coming does not at all prepare you for knowing how it's going to feel. And you are so right - we can't predict all those other straws laid on our backs. I really think that all those other issues have been keeping me from being able to deal with PD in a constructive manner.
As it is, I still would not trade this life for anything. I have the love of my life beside me, a man who truly makes me happy, in spite of all the ugly PD issues we deal with.
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