I can't believe it's been a whole year and I've only written a couple of blog posts. I was thinking about all the posts I have written, many of the posts in the beginning, about having moles removed or being humiliated on Pictionary. The levity in them seems to have disappeared along with my desire to write. I kinda wonder what changed.
I know that dealing with an autoimmune disease has been one thing. First of all there is the fact that it just isn't considered an actual thing by really anyone. It's funny, I was talking with a guy I know about it and I explained how it's just like Lupus and he said, "Well except that Lupus is serious." And I said, "Exactly." Same dog, different leg. My autoimmune system attacks my body. I know, I absolutely to my soul comprehend that I can not expect anyone on the planet to understand what I went through for so long throughout my life before I finally found a way to sort of cope and then begin to feel better. I remember hearing about things like Epstein Barr and thinking it was all in people's heads and they just needed to buck up and quit whining. I was that person so I get that person. I still don't really talk much about it other than maybe with other people who have it or the people I work with as a means of helping them maybe understand why I am the way that I am, somewhat tired, caffeinated, and a tad forgetful.
We also had a solid year of working through Brett's depression. Now, it's not really my story to tell, it's his illness, so it's his story. But my story is that it came at a time when I really wanted someone to take care of me, but he needed someone to take care of him, so we both just sort of took care of ourselves. Which figures since we married late in life and we were used to being independent and alone. This is not to say that I in any way blame him, it's just a fact. I appreciate that he has not only kept a job during his depression but he's advanced and gotten promoted repeatedly which his doctors were entirely baffled by. It's cause he's cool like that.
Then with the heart failure. And the feelings that come afterwards are hard to describe. They told me, repeatedly, that you go through depression after a heart event. It is a well documented fact and heartily recognized by the medical community. Every single one of my doctors and my Visiting Teacher all made sure I was very clear that it was a real thing. I wish they hadn't. I knew what depression was, I live with someone with it, and what you feel after a heart event is not the same as depression. It is a total re-calibration of your life. In the beginning, things feel hyper-colored and important. Things that maybe don't really matter so much. Everything that actually is important has meaning three layers deep. I can only akin it to being a walking, talking exposed live wire. I reality-checked in frequently with my dear friend David who has had multiple open heart surgeries and he's only in his thirties. He knew. He got it. Thank heaven. I found that, yes, I didn't want to work, but not because I didn't love my job anymore. I was healing. And I could sort of tell I was still not 100% yet and I was also emotionally off-kilter. I knew I could look fairly normal for short periods of time but that I wasn't normal. (Kind of the story of my life.) I turned down films, short films, music videos...I mean, fun stuff. Stuff I would not normally hesitate for one second to do. I've stayed at home more over the last year than I have in my entire life which is a huge risk in my industry because the fear is real that they will one day just stop asking, if you keep saying no. But the re-calibration included being with my family more. And thankfully my husband had a new job that meant that I could. God is good.
Last week I went into the ER for more tests. I've been passing out. So I did a Tilt Table Test. Seemed basic. You get an IV and attached to a butt ton of devices and then lay down on a table you're strapped to for about thirty minutes. Then they tilt you back up to a 70 degree angle and you sit there. No big deal. But once I was vertical and I began to get light headed and I couldn't move, I started freaking out and I heard myself say, "I'm dying, I'm dying," and then at some point I passed out. The rest of the day I felt incredibly nauseous and sort of freaked out all over again. I was wondering why on earth I should be given so many opportunities to experience a loss of consciousness. It felt like the bastard brother of the blackouts I had during my AV Block, only slower and more diabolical because I couldn't move my arms or legs at all. I can only assume it's pretty close to what it feels like to die from blood loss or asphyxiation. Maybe someone I know will finally snap one day and strangle me and I will be familiar with the process. Maybe they will strangle me with one of my new compression stockings I'm told I have to wear. I can only hope so because heaven knows I'd rather die than wear these hideous things.
I can't say that I am back to normal because it's still an ongoing thing, all of these health issues, and they seem to point to the fact that I am now "that" buffalo in the herd. The wounded old buffalo. The one in the back. I'm sort of priming myself for an early departure. There is something magical though about knowing that every one of your days in the present is actually a day that you are only borrowing, because a year ago a bunch of smart people got together and bought them back for you. There's an odd peace in that. And an incredible amount of gratitude.
I know that dealing with an autoimmune disease has been one thing. First of all there is the fact that it just isn't considered an actual thing by really anyone. It's funny, I was talking with a guy I know about it and I explained how it's just like Lupus and he said, "Well except that Lupus is serious." And I said, "Exactly." Same dog, different leg. My autoimmune system attacks my body. I know, I absolutely to my soul comprehend that I can not expect anyone on the planet to understand what I went through for so long throughout my life before I finally found a way to sort of cope and then begin to feel better. I remember hearing about things like Epstein Barr and thinking it was all in people's heads and they just needed to buck up and quit whining. I was that person so I get that person. I still don't really talk much about it other than maybe with other people who have it or the people I work with as a means of helping them maybe understand why I am the way that I am, somewhat tired, caffeinated, and a tad forgetful.
We also had a solid year of working through Brett's depression. Now, it's not really my story to tell, it's his illness, so it's his story. But my story is that it came at a time when I really wanted someone to take care of me, but he needed someone to take care of him, so we both just sort of took care of ourselves. Which figures since we married late in life and we were used to being independent and alone. This is not to say that I in any way blame him, it's just a fact. I appreciate that he has not only kept a job during his depression but he's advanced and gotten promoted repeatedly which his doctors were entirely baffled by. It's cause he's cool like that.
Then with the heart failure. And the feelings that come afterwards are hard to describe. They told me, repeatedly, that you go through depression after a heart event. It is a well documented fact and heartily recognized by the medical community. Every single one of my doctors and my Visiting Teacher all made sure I was very clear that it was a real thing. I wish they hadn't. I knew what depression was, I live with someone with it, and what you feel after a heart event is not the same as depression. It is a total re-calibration of your life. In the beginning, things feel hyper-colored and important. Things that maybe don't really matter so much. Everything that actually is important has meaning three layers deep. I can only akin it to being a walking, talking exposed live wire. I reality-checked in frequently with my dear friend David who has had multiple open heart surgeries and he's only in his thirties. He knew. He got it. Thank heaven. I found that, yes, I didn't want to work, but not because I didn't love my job anymore. I was healing. And I could sort of tell I was still not 100% yet and I was also emotionally off-kilter. I knew I could look fairly normal for short periods of time but that I wasn't normal. (Kind of the story of my life.) I turned down films, short films, music videos...I mean, fun stuff. Stuff I would not normally hesitate for one second to do. I've stayed at home more over the last year than I have in my entire life which is a huge risk in my industry because the fear is real that they will one day just stop asking, if you keep saying no. But the re-calibration included being with my family more. And thankfully my husband had a new job that meant that I could. God is good.
Last week I went into the ER for more tests. I've been passing out. So I did a Tilt Table Test. Seemed basic. You get an IV and attached to a butt ton of devices and then lay down on a table you're strapped to for about thirty minutes. Then they tilt you back up to a 70 degree angle and you sit there. No big deal. But once I was vertical and I began to get light headed and I couldn't move, I started freaking out and I heard myself say, "I'm dying, I'm dying," and then at some point I passed out. The rest of the day I felt incredibly nauseous and sort of freaked out all over again. I was wondering why on earth I should be given so many opportunities to experience a loss of consciousness. It felt like the bastard brother of the blackouts I had during my AV Block, only slower and more diabolical because I couldn't move my arms or legs at all. I can only assume it's pretty close to what it feels like to die from blood loss or asphyxiation. Maybe someone I know will finally snap one day and strangle me and I will be familiar with the process. Maybe they will strangle me with one of my new compression stockings I'm told I have to wear. I can only hope so because heaven knows I'd rather die than wear these hideous things.
I can't say that I am back to normal because it's still an ongoing thing, all of these health issues, and they seem to point to the fact that I am now "that" buffalo in the herd. The wounded old buffalo. The one in the back. I'm sort of priming myself for an early departure. There is something magical though about knowing that every one of your days in the present is actually a day that you are only borrowing, because a year ago a bunch of smart people got together and bought them back for you. There's an odd peace in that. And an incredible amount of gratitude.
2 comments:
What a crazy year! I am so glad you are still taking that borrowed time and running with it. Happy, happy, HAPPY birthday!
I don't know why I'm just now seeing this. As always, you write so brilliantly. I hope you and I can get you back to feeling some normalcy. Also, I've just been given that last push to tell my story too. Coming soon!
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