The last couple of weeks since Micah and I have gone to the kidney transplant class have been full of anxiety and hope. Micah, in particular, wears his emotions on his sleeve. I’ve been watching him run the gamut of emotions; as I watch, I empathize.
In general, I prefer to see the good side of a situation, because if I dwell on the bad, I know all it does is stress me out. It’s sort of a zen kind of thing, too. There is no use in fretting over things that I have no control over. Micah tends to envy this calm, because all he sees is a nice, cool exterior and me being level-headed and unflappable.
However, just because I seem like I’m unflappable, doesn’t mean I’m not thinking about whatever the problem is. And just because my exterior is calm doesn’t mean that subconsciously it isn’t eating away at me, and bothering me and affecting my behavior in other ways.
For example, I wrote recently about how I’ve been hit by the blahs. This started shortly after Willow got out for summer break and before our transplant class. I thought about it a lot, and attributed it to my new lack of schedule to keep me on track.
And I believe that is one of the major source of my blahs. I think in retrospect, though, (and after much searching of my inner depths) there is another reason that is more insidious and one that makes me feel super guilty and feel like a horrible wife.
Since we’ve found out that Micah was going to be referred to OHSU to be checked out to see if he is a good transplant candidate, I have been feeling a bit unsettled. I’ve been going over this unsettled feeling in my mind, and I know it isn’t because I’m worried about the outcome of the surgery. Oh sure, I’m worried about that, as any wife would be–but there is more to it than that. I think the reason is much more selfish than that. I’ve come to the realization that Micah’s transplant completely overrides my own dreams and I don’t know when I will EVER get to walk across America.
See, once Micah has gone through the testing, if he is approved for transplant, any number of scenarios could happen. His aunt, who volunteered to donate, may be a perfect match and the surgery could happen maybe even as early as the end of this year or sometime next. If that happens, my walk goes on hold, as I am Micah’s caregiver.
OR, his aunt may not be a good match for any number of reasons, and Micah could be placed on the kidney transplant registry. The wait here in Oregon is approximately two years. It could take three months or it could take five years. Who knows how long it will take before he gets his transplant?
And therein lies the problem. Even if he gets a transplant within the next eight months, I’ll be missing out on my walk next year. And then, because of the continual vigilance he has to go through for the first year or so of his transplant, that means many many doctor visits, and I will need to be there to help him through that. I don’t have to do it because I don’t think he can handle it–no, it’s not like that. I have to do it because it is one of the requirements of getting a transplant. Transplant patients must have a caregiver who can help them through everything because there is SO MUCH to it.
So, if Micah has a transplant very soon, it means my trip gets put off up to two, maybe three years. If he ends up on a list, the transplant may be put off for God knows how many years.
This realization really hurts. I WANT to help Micah. I WANT Micah to get a transplant. I WANT him to do better. I WANT him to have a good quality of life. But I want to live my dream, too, and if he is approved for transplant, that means my dreams get put on hold. Again.
And so I feel guilty and selfish because I’m thinking these things, because Micah needs to be better. He needs this transplant and him having good health and a new life is far more important than some walking across America dream of mine. My dream can be put off. But it makes me cry to think about doing so. I wish I could be two people and do both!
So I believe this conundrum has been another major source of my blahs. I think subconsciously I’ve been thinking–what’s the point? Why train? I’m never going to get to walk across America! Waaah!
Of course, thinking these negative thoughts kind of goes against my whole “you shouldn’t fret over things that aren’t in your control, especially things that you don’t even know are set in stone yet”. Well, I think I’m fretting. It’s crazy, because we still have a whole lot of uncertain outcomes to pass first. Like, will Micah even be given the go ahead for a transplant in the first place? I could be doing all this fretting and feeling horrible for no reason at all. And then, if he is NOT approved, I’ll feel even more horrible, because we are soooo hoping the give him a thumbs up and then I’ll feel like I jinxed it in some way for giving off negative vibes. And then, will his aunt be an approved donor? Will Micah be put on a list? I don’t know the answers to any of these questions, and yet I just feel the certainty of the outcome of me not being able to walk.
And that negativity is killing me. My motivational well is really dry at the moment.
Ugh. I feel guilty for even thinking like that. Generally, I try to think of the silver lining when unsavory things happen. IF Micah is approved for transplant and WHEN that happens, it might take a year or two or four, but once he gets his transplant and Micah is healed up enough, he will be able to go with me and he can be the support person for me on my trip. He has already expressed his desire to try again. So after his transplant, we can have the fun of doing the trip together. But then the negative Nelly kicks in and I think yeah, but I’m having a hard enough time figuring out how to pay for just me–and our last trip in 2009 was so expensive when we did it together–how on earth are we going to make it happen again?
Aaarrrrggghhh! I feel like such heel and selfish and jerky. Truthfully, I will be super grateful and elated if Micah qualifies for the transplant. I do want him to feel better. But I want to do my thing, too. That’s why I’m feeling like I’m a lousy wife.
There is no question. I will wait. I need to do some soul-searching and figure out how I am going to re-direct my life during this wait time. I still want to do something for the kidney community and help it out. We are working on Micah’s documentary. We are also working on a doc for NW Kidney Kids. I will blog about that tomorrow. And I did make a commitment to walk 2000 miles around Portland before the end of the year, and I still want to do it. If nothing else, the walking is good for me.
But please tell me that this interruption of my plans will all work out for the better. I need to hear it, even if at the moment it doesn’t really feel like it.