Cystic Gal (CG) UnBlog: CGUnBlog
I will be using UnBlog to write more veraciously everyday, so that I can worry about editing later without clogging up the CG blog. Read other reasons below in . . .THE BEST OF UnBLOG: First Edition, where I show a melding of the discussions (me, discussing with me . . .) that came up on UnBlog recently.
Why UnBlog?
One reason is that I have a lot of younger readers of the CG, both my irl students (post high school) and young CFers. I started to feel like there are some things I don't want to say on the CG if I know my youngies are gonna read them. For example, the holidays STRESSED MY SHIT OUT and I could not write about it a single bit because it would've offended the shiiiit out of every human I know. Though most humans I know were stressed out at the holidays too. It is just no fun to be waiting on lungs and singing the Christmas carols. I'll tell you where to put the yule log. hee hee.
That post coming soon, perhaps tomorrow.
The other reason for the unblog is that I want some things to remain private from my coworkers and family, and to just exist as writing projects without muddying the CG blog which is taking on more of a proactive approach to the CF bloggy community. I've started to get creepy comments on my blog from people that the famous CF Husband (not mine) would call "the trolls," who are either CF parents that don't want to read negative things AT ALL (and apparently someone is tying them down and forcing them to read my blog), or religious extremists who don't enjoy any of my spiritual discussions, or whatever, so I want to be able to put stuff up without hearing from "the trolls," while still leaving CG open to comments and etc.
I also really want to commit to posting every day if I possibly can, on either CG or CGUnBlog, so that I can hold on the memories of my upcoming transplant. I am really sad that I don't have daily posts from the three weeks I was approaching, in, and recovering from respiratory failure. I mean, of course the week in ICU I could not have written the posts, but I could have done it the week prior or the week after, and then I would have had a clearer memory now of the way my mind was working THEN.
The Gives and Gets of Pre-Transplant
My friend T-Money^ sent me a quote that I used on facebook that says something like, "Don't think of organ donation as giving up part of your self to keep a total stranger alive, think of it as a total stranger giving up almost all of them self to keep a part of you alive."
This got me thinking about what I am giving up, what all recipients give up in the pre-transplant process that could come just before the dying process, and for many of us, leads to death.
I have been thinking, also, about what transplant recipients have to gain- and what many do. From the seemingly small ability to hold one's breath for a long time, to returning to sports that many abandon in childhood or adolescence, to having the time and energy to reach new heights in our careers, hobbies, friendships, and romances.
Because you know I love a tragedy, I want to first talk about what I believe I have given up since that moment when Dr. U-Bird^ said, "Why don't we make the call right now? Get your process started now?" knowing that if I left clinic and thought about it for another month it could mean a big difference in my care. That moment was just in August - only 4 months ago, and here I am, 2 1/2 months on The List.
What have I given up so far?
My job. I can't go so far as to say that I have given up my career but I most certainly have given up my job for a time. I miss my work dearly. I never realized how much of my personality is balanced by my work, how much my psychology is based around a sense of accomplishment (which now I can't seem to muster), how much my mind depends on busy-ness. I am asking myself these questions today:
What do I do when I have nothing to do?
What do I wear when I have nothing to dress "for"?
What do I think about when I have nothing to think about?
What do I talk about when there is no personal news to discuss?
I think that I always romanticized the past parts of my life that were dedicated to my illness. Times in the past where I was so sick that I couldn't go out of the house, I was always well enough to be reading something, or writing something. Also, at those times I was always in grad school, college or high school. I was always able to fill my time and expend my energy with intellectual goings on. At this time of my life, as I prepare for transplant, all of my energies must be directed on taking care of my Self, and the amount of energy I have to give to anything else is very little. I have had trouble even keeping up with my blog, emails and personal correspondence.
In the back of my mind, I thought I would be able to spend this time writing a great play or novel, reading all the books I never had time to read before, or watching all the movies that I should have seen. I even had visions of meditating for hours a day or reading the Bible front to back. I was overly attached to this romantic ideal of my spiritual/intellectual expansion while my physical abilities are limited. Now, part of me is greatly disappointed that "this" is all there is to do (sleeping, eating, medicines, pt, cpt, hot bath, repeat), and that "this" is really quite enough, sometimes too much, for a day.
So what have I given up? My job, my career (temporarily), but also the parts of my self-esteem that are attached to my intellect or academic pursuits. With that, of course, I will gain some understanding of other aspects of my Self- I am however, not on to that enlightenment yet.
What have I give up for transplant?
The way I look. I am very unhappy with how I look right now, and even less happy with the idea that I will have less control over how I look - for the rest of my life. After transplant, I might get a puffy face from steroids. Or my hair might change color or texture. Or I might gain or lose weight. And I will have scars all over my chest.
This is not all that bad, I know. There are many who have lost more of their body than I have or will to other diseases or afflictions. Yet, anytime a person looks in the mirror and thinks, "who is that?"-it's not a good moment.
I am getting to know a more stripped-down version of myself. I know that this time has broken my addiction to being pretty all the time. I have gone through periods of time like this in the past. My freshmen and sophomore years of college were pretty "anti pretty." But this is the furthest I have ever gone in to the realm of not conforming to my pretty-potential. I can't say that I enjoy it. I wish I had never cut my hair. True confession: I hate my port. My skin is all pasty white and no more tanning for me :( and my hair is like 5 shades darker since I cut it and the IVs ruined it this summer/fall, and the Lupron darkens it too. That's right folks, I do not feel pretty and I am not happy about it.
At the same time, it provides a little relief to know that this is obviously not the stage of life where I'm gonna "catch myself a man" anyway, so what is the point, really, right? I don't know. I worry that I will not find love even after my transplant. I worry that my near misses so far are all that are in the cards for me. Which is more than some people have all their life, so I should not complain. I am glad to have learned that I don't care if I never find romantic love again, I have a lot of other types of love to live for.
What have I given up so far?
(some of) My friendships. When I got so sick this summer, I was suddenly hit with a wave of could be social anxiety, could be survival instinct, or could just be cattiness. With a large rush, I just wanted to cut the cord on many of my friendships prior to the transplant. I may pursue these friendships when I am well again, but for a myriad of reasons, there were a list of people that I just did NOT want around me during my time of great illness and healing.
It is unfortunate that people with CF or any other chronic illness have a lens through which they see all friendships. Will this person be with me through my sickness? If not, do I want to be friends with them anyway, and why? Sometimes, the answer is yes. Some friends are just good for fun, or a laugh, or some shared hobby or history together - though you know they are undependable you choose to accept them. In a time of health crisis or healing, however, there is no time for these cursory friends. No energy. No desire.
In my case, when I was sick this fall, my blood pressure and oxygen levels were so sensitive, that my blood pressure would spike when the phone rang. My oxygen would dip low when certain people came in the room just based on the change in my breathing. When I was trying to ween down from 12L of oxygen, I had to turn off my phone completely and ask the nurse to limit visitors to my room because it was driving my blood pressure up and my oxygen SAT down.
we just need to push aside SOME friends in these dire circumstances.
There are three friendships in particular that I have lost or curtailed in the past year. There are three specific reasons for this. One friendship ended because the person was not there for me - for three months. Though the person had been supportive of me in the past, as my health went downhill, she completely ignored me. I was in the hospital and adjusting to using oxygen at home and "out and about," dealing with a large shift in my lifestyle.
When she and I tried to patch things up, I went along for a few more months until I realized that I truly could not forgive her for abandoning me when I needed her, and even if I could forgive her (I have since,) I would never trust here again. While she expected me to be there for her every time she had a crisis, she had proven to be that she would not be there for me. How can a friendship keep building?
The second friendship, I hope to resume after my transplant. Over the past year of our friendship, I realized that my illness was becoming so central to our friendship - central to the person's interest or loyalty to me. In several situations, she would bring up CF around people I didn't know very well, and it would become the centerpiece of discussion, i.e. my life history would become the party game or "hot topic." Though unintentional, I think this friend was in some ways attached to my identity only through my illness, and not through a desire to know the whole me. As I began to realize this, every encounter with her became like being run over by a Mack truck. She would hound me about my health, and tell me, "THAT SUCKS! That's horrible!" about any little detail- even things that are just every day life with CF. I started to realize that the friend was more "caught up" in the idea that my life was bad (which it ain't!) and that she could "help" me (which she couldn't!), than on any real connection. When I got so suddenly ill in August, I just had to cut her loose. I did not have the emotional or physical energy to deal with her then, and I think the drama of dealing with her now would be just as bad for me (perhaps give me a setback I do not need). It is less than ideal, but I don't plan on having any contact with her 'til after my transplant, if then.
More laters....
This got me thinking about what I am giving up, what all recipients give up in the pre-transplant process that could come just before the dying process, and for many of us, leads to death.
I have been thinking, also, about what transplant recipients have to gain- and what many do. From the seemingly small ability to hold one's breath for a long time, to returning to sports that many abandon in childhood or adolescence, to having the time and energy to reach new heights in our careers, hobbies, friendships, and romances.
Because you know I love a tragedy, I want to first talk about what I believe I have given up since that moment when Dr. U-Bird^ said, "Why don't we make the call right now? Get your process started now?" knowing that if I left clinic and thought about it for another month it could mean a big difference in my care. That moment was just in August - only 4 months ago, and here I am, 2 1/2 months on The List.
What have I given up so far?
My job. I can't go so far as to say that I have given up my career but I most certainly have given up my job for a time. I miss my work dearly. I never realized how much of my personality is balanced by my work, how much my psychology is based around a sense of accomplishment (which now I can't seem to muster), how much my mind depends on busy-ness. I am asking myself these questions today:
What do I do when I have nothing to do?
What do I wear when I have nothing to dress "for"?
What do I think about when I have nothing to think about?
What do I talk about when there is no personal news to discuss?
I think that I always romanticized the past parts of my life that were dedicated to my illness. Times in the past where I was so sick that I couldn't go out of the house, I was always well enough to be reading something, or writing something. Also, at those times I was always in grad school, college or high school. I was always able to fill my time and expend my energy with intellectual goings on. At this time of my life, as I prepare for transplant, all of my energies must be directed on taking care of my Self, and the amount of energy I have to give to anything else is very little. I have had trouble even keeping up with my blog, emails and personal correspondence.
In the back of my mind, I thought I would be able to spend this time writing a great play or novel, reading all the books I never had time to read before, or watching all the movies that I should have seen. I even had visions of meditating for hours a day or reading the Bible front to back. I was overly attached to this romantic ideal of my spiritual/intellectual expansion while my physical abilities are limited. Now, part of me is greatly disappointed that "this" is all there is to do (sleeping, eating, medicines, pt, cpt, hot bath, repeat), and that "this" is really quite enough, sometimes too much, for a day.
So what have I given up? My job, my career (temporarily), but also the parts of my self-esteem that are attached to my intellect or academic pursuits. With that, of course, I will gain some understanding of other aspects of my Self- I am however, not on to that enlightenment yet.
What have I give up for transplant?
The way I look. I am very unhappy with how I look right now, and even less happy with the idea that I will have less control over how I look - for the rest of my life. After transplant, I might get a puffy face from steroids. Or my hair might change color or texture. Or I might gain or lose weight. And I will have scars all over my chest.
This is not all that bad, I know. There are many who have lost more of their body than I have or will to other diseases or afflictions. Yet, anytime a person looks in the mirror and thinks, "who is that?"-it's not a good moment.
I am getting to know a more stripped-down version of myself. I know that this time has broken my addiction to being pretty all the time. I have gone through periods of time like this in the past. My freshmen and sophomore years of college were pretty "anti pretty." But this is the furthest I have ever gone in to the realm of not conforming to my pretty-potential. I can't say that I enjoy it. I wish I had never cut my hair. True confession: I hate my port. My skin is all pasty white and no more tanning for me :( and my hair is like 5 shades darker since I cut it and the IVs ruined it this summer/fall, and the Lupron darkens it too. That's right folks, I do not feel pretty and I am not happy about it.
At the same time, it provides a little relief to know that this is obviously not the stage of life where I'm gonna "catch myself a man" anyway, so what is the point, really, right? I don't know. I worry that I will not find love even after my transplant. I worry that my near misses so far are all that are in the cards for me. Which is more than some people have all their life, so I should not complain. I am glad to have learned that I don't care if I never find romantic love again, I have a lot of other types of love to live for.
What have I given up so far?
(some of) My friendships. When I got so sick this summer, I was suddenly hit with a wave of could be social anxiety, could be survival instinct, or could just be cattiness. With a large rush, I just wanted to cut the cord on many of my friendships prior to the transplant. I may pursue these friendships when I am well again, but for a myriad of reasons, there were a list of people that I just did NOT want around me during my time of great illness and healing.
It is unfortunate that people with CF or any other chronic illness have a lens through which they see all friendships. Will this person be with me through my sickness? If not, do I want to be friends with them anyway, and why? Sometimes, the answer is yes. Some friends are just good for fun, or a laugh, or some shared hobby or history together - though you know they are undependable you choose to accept them. In a time of health crisis or healing, however, there is no time for these cursory friends. No energy. No desire.
In my case, when I was sick this fall, my blood pressure and oxygen levels were so sensitive, that my blood pressure would spike when the phone rang. My oxygen would dip low when certain people came in the room just based on the change in my breathing. When I was trying to ween down from 12L of oxygen, I had to turn off my phone completely and ask the nurse to limit visitors to my room because it was driving my blood pressure up and my oxygen SAT down.
we just need to push aside SOME friends in these dire circumstances.
There are three friendships in particular that I have lost or curtailed in the past year. There are three specific reasons for this. One friendship ended because the person was not there for me - for three months. Though the person had been supportive of me in the past, as my health went downhill, she completely ignored me. I was in the hospital and adjusting to using oxygen at home and "out and about," dealing with a large shift in my lifestyle.
When she and I tried to patch things up, I went along for a few more months until I realized that I truly could not forgive her for abandoning me when I needed her, and even if I could forgive her (I have since,) I would never trust here again. While she expected me to be there for her every time she had a crisis, she had proven to be that she would not be there for me. How can a friendship keep building?
The second friendship, I hope to resume after my transplant. Over the past year of our friendship, I realized that my illness was becoming so central to our friendship - central to the person's interest or loyalty to me. In several situations, she would bring up CF around people I didn't know very well, and it would become the centerpiece of discussion, i.e. my life history would become the party game or "hot topic." Though unintentional, I think this friend was in some ways attached to my identity only through my illness, and not through a desire to know the whole me. As I began to realize this, every encounter with her became like being run over by a Mack truck. She would hound me about my health, and tell me, "THAT SUCKS! That's horrible!" about any little detail- even things that are just every day life with CF. I started to realize that the friend was more "caught up" in the idea that my life was bad (which it ain't!) and that she could "help" me (which she couldn't!), than on any real connection. When I got so suddenly ill in August, I just had to cut her loose. I did not have the emotional or physical energy to deal with her then, and I think the drama of dealing with her now would be just as bad for me (perhaps give me a setback I do not need). It is less than ideal, but I don't plan on having any contact with her 'til after my transplant, if then.
More laters....
