I confess...it's been a long few days. I try not to talk too much about "other people's stuff" here and to focus on my own story and my own thoughts. I may be okay to live openly in the e-universe, but I can't presume others are as well. This post will be a bit of an aberration. It may also be hard to read.
We left Central PA on Friday when we got a call that MM's father was struggling. He has been ill for some time, beating one diagnostic estimate by many years. The past month, however, has been a downhill journey and this is our second visit in a very short period. He was home the first visit and had some home health help, but required overnight care from a relative. Towards the end of that stay, after some long nights for MM on the other side of parental care, he was moved to the hospice wing of the hospital.
We came back out last Friday for MM to attend a family meeting with the hospice team. The care provided by the hospice team was amazing. They were kind and gentle to the patient and also very available for the family. They had a nicely stocked kitchen for families to use, either for themselves or to bring something in to the patient. It was definitely a danger zone for this Rambler with graham crackers, cookies, ice cream, and PB, but a lovely touch when you realize the long hours families may spend in the hospice care wing.
His voice has been quiet and raspy, usually difficult to hear, through the weekend. On Monday, it was suddenly clear. We'd been warned that there would be a fleeting moment of improvement before the final time, but it is tough to not see that moment and hope. On Tuesday, they called to report "a change in condition." MM's sisters were there early and we brought his mom around 1. He couldn't speak and his breath rattled. He tugged hard at his wife's hand. When the sisters left on an errand, his struggling got worse. They gave him medicine to relax. He got out the word "help" a few times, along with "I love you" to his family. He let us know he wanted to see the digital picture frame and MM held it for him. I wavered between being unobtrusive and helping, when others couldn't speak through the tears, to tell him it was okay to go and that soon the pain would be gone. As his breathing slowed, MM and his mom held his hand. I tried to hold them as best I could.
I won't detail the time that followed. Needless to say, it was hard. I stepped away a few times to give them privacy. A sister later said I needn't worry, that I was part of the family too (which made me teary again). I'd been trying to bring water since I knew they couldn't focus on self-care. A mention was made of ginger ale, a favorite of the father's that they suddenly craved. The family kitchen had run out of the mini-cans they'd had for days and a volunteer told MM, who'd gone looking, that they didn't have more. I offered MM a two-liter of Sierra Mist from the fridge, but he said specificity mattered. I ran off with my purse -- somehow relieved by having a task, a way to help just a small bit. I returned with four 20oz bottles from the cafeteria. They laughed at my packed-full paper bag as I told them I'd bought the place out. Okay, not quite true...I got one per person other than me...but it gave a moment of smiles and laughter which I think helped as much as the hydration. Later, I helped by offering what I view as one of my personal gifts, putting together words for the first draft of an obituary notice -- at once brief but also long enough to honor the passing.
Some other time, I'll talk about the complexity of feeling pain when in the presence of something much worse...that had characterized the earlier days and the prior visit. Right now, I'll say that I'd never before witnessed someone's last moments. It is an odd feeling. I tried to speak when others couldn't and assure him it was okay to rest. I knew he had a strong religious background so spoke to him of that and handed a prayer card to MM to read with his Mom. I told him he'd soon be free of the pain that he'd faced for a long time. I know he believed he would find a better place beyond this one, and that he hadn't wanted further efforts when the time came. We all tried to offer comfort, but I still saw a fear unlike any other.
Being in that room was hard, even when I knew it was harder for everyone else. In no way do I think my emotions were as important as the family's, but I'll admit I felt helpless. I wanted to help, but I simply couldn't. I wanted to make it better for MM and his family, but it wasn't a feeling I could fix. We (MM, his mom, 2 sisters, a minister for part of the time) talked for a few hours in the room, with moments of tears but also moments of smiles. That seemed right. I think a passing should be marked by sadness but also celebration of memories and of loved ones moving forward.
Beyond that, I also realized something else....being in that room, being present at the moment between here and "there", helps bring a measure of a comfort in a time of great fear. Perhaps more notably, being in the room, at that moment, is an honor.
I don't know what lies beyond this world. Still, I wish him peace, the knowledge that he was loved, and the comfort of knowing his family will mourn but will do so together. And also that they will be okay, they will survive and move on to live their lives with his memory inside them.
Thursday, July 5, 2012
Wednesday, June 13, 2012
4.5 stars for Things We Left Unsaid (Pirzad)...and a quick status update
I confess...I think my new medicine is playing with my brain. I saw several comments from folks who said they got "fuzzy brained" for a while when first adjusting to it. I have only been taking one dose a day and doing that at night, but I'm pretty sure that's the case for me too. One night, I tried to read when I couldn't sleep and just couldn't focus well at all. A bit nervous about adding an A.M. dose tomorrow...it'll be a week at two doses and then I'll go to three where I'll stay. Almost everything I've read swears the side effects do go away and people were glad they stuck it out. I can't tell yet if it is helping, but I definitely plan to stick it out.
I do, however, want to write up a review now. I usually like to wait till I have two, but I'm worried I'll "lose" my thoughts, especially since my current read is a bit complex with shifting time periods and focal characters that all overlap/interrelate (is that a word?). I am enjoying it, but the prior book definitely deserves not to be lost...
I greatly enjoyed this book. In many ways, the basic story of a woman questioning her life, a life she's just lived for many years as a wife and mother without really examining her own satisfaction, could be set anywhere. However, the culture definitely runs throughout and I enjoyed the glimpses into a different society. The Armenians in Iran are very much a subculture and they generally only interact within their own community. The community in the book is also very much built around the oil company, it is a more institutionalized version of the company towns we see in the U.S. with housing and transport built for workers and with different neighborhoods for workers and management (again, something seen in many U.S. towns). It isn't a major focal point, but there are hints of politics such as when Clarisse wanders into a speech about women's rights (she's drawn to it but also very uncomfortable) and her concerns that her husband's political interests might be dangerous.
Through a good portion of the book, it was a hinting at being a 5 star read for me. As it progressed, I got a bit frustrated with Clarisse and I felt like I couldn't really relate to her sudden discontent. I felt like she was a bit dramatic at times, almost acting like things were tragic. I don't want to spell out more detail since it might be spoiler-ish and think the disconnect may be due to cultural/temporal differences. Despite that issue, I very much enjoyed the book and give it 4.5...rounding down just b/c I'm stingy with putting 5. I enjoyed the writing voice, though I never know how much of that to attribute to a writer and how much a translator influenced a book that originated in another language.
FYI -- There is a useful appendix in the version I have that explains some elements such as public figures, cultural observations, and even foods that an American reader might not recognize. I found it helpful to actually read through this section all at once (stumbled upon it when I looked to see how many pages were in the novel, an odd habit of mine) and then consulted it a couple of times as I read.
I do, however, want to write up a review now. I usually like to wait till I have two, but I'm worried I'll "lose" my thoughts, especially since my current read is a bit complex with shifting time periods and focal characters that all overlap/interrelate (is that a word?). I am enjoying it, but the prior book definitely deserves not to be lost...
- Things We Left Unsaid by Zoya Pirzad
I greatly enjoyed this book. In many ways, the basic story of a woman questioning her life, a life she's just lived for many years as a wife and mother without really examining her own satisfaction, could be set anywhere. However, the culture definitely runs throughout and I enjoyed the glimpses into a different society. The Armenians in Iran are very much a subculture and they generally only interact within their own community. The community in the book is also very much built around the oil company, it is a more institutionalized version of the company towns we see in the U.S. with housing and transport built for workers and with different neighborhoods for workers and management (again, something seen in many U.S. towns). It isn't a major focal point, but there are hints of politics such as when Clarisse wanders into a speech about women's rights (she's drawn to it but also very uncomfortable) and her concerns that her husband's political interests might be dangerous.
Through a good portion of the book, it was a hinting at being a 5 star read for me. As it progressed, I got a bit frustrated with Clarisse and I felt like I couldn't really relate to her sudden discontent. I felt like she was a bit dramatic at times, almost acting like things were tragic. I don't want to spell out more detail since it might be spoiler-ish and think the disconnect may be due to cultural/temporal differences. Despite that issue, I very much enjoyed the book and give it 4.5...rounding down just b/c I'm stingy with putting 5. I enjoyed the writing voice, though I never know how much of that to attribute to a writer and how much a translator influenced a book that originated in another language.
FYI -- There is a useful appendix in the version I have that explains some elements such as public figures, cultural observations, and even foods that an American reader might not recognize. I found it helpful to actually read through this section all at once (stumbled upon it when I looked to see how many pages were in the novel, an odd habit of mine) and then consulted it a couple of times as I read.
Friday, June 8, 2012
emBODYment
I confess...I am pondering emBODYment..and playing with words to make them work for me. This is really long...feel free to skip the update and go to the second section if you so desire...
UPDATE
I had a second round of diagnostic injections a couple weeks ago. The second doctor at the pain clinic had been on leave and I pretty much wanted to throw her a Welcome Back party when the appointment folks said she had returned. I knew it would be a better fit when she actually talked to me before the procedure and tried to make me feel less nervous. After being belittled for being scared the previous time I had needles poked in my spine, I took this as a good sign. I had about an hour after the injection where my pain dropped significantly. I put it at a 2 on the ever-popular 1-10 pain scale...I can't recall the last time I hit a 2. It only seemed to last as long as the anesthetic though, instead of having additional relief from the other meds in the cocktail.
I was able to schedule the follow-up with Lady Pan Doc. She never once made me feel attacked, which was amazing after feeling so belittled every time I saw the prior Pain Don. She said that the results really weren't what they would hope and that it indicated that it didn't make sense to move to ablation of the nerves. She suggested she approved of the pain meds I'm on (SUCH a change from being called a wimp and told to just deal w/ a daily level 8-9 pain unmedicated). I mentioned I really didn't want to need to use them for the next 50 years and she said I took the next words out of her mouth. I also said that the maintenance meds did help but I was still pretty bed-bound and I wasn't ready to concede that I'm going to spend the next 50 years in this state. She was completely understanding.
She wasn't sure what the next move would be but then mentioned that she figured I had already tried a different medication avenue. I had not, so we are trying a medicine that really targets nerve pain. She noted that patients have reported increased appetite on the medicine...people have put on weight but she said it was not the medicine itself but the increased food intake. Given my history, that makes me nervous and it felt like almost being asked "How bad do you want it (i.e. relief)?" After four months in bed, having to save up energy for a couple hours upright a week for dinner out or to see friends, the answer is clearly that I want it bad enough to deal with the side effect (Side note: Of course, the day before the appt I had ordered a bridesmaid dress based on my current size...the fact that my measurements landed me in three different sizes so I needed help from the store owner might be fodder for a future thought burst.).
The medicine can also make you a bit fuzzy at first so it is another one I need to build up over a few weeks...one week at one dose, one week at two doses, and then move to the goal rate of three doses a day. My online research has a lot of folks reporting good results with the medicine, though they noted they did have to wade through a transition time until they got used to it and the initial side effects faded. After a minor SNAFU (b/c it would be too much to ask that it work easily) of the script being sent to the wrong pharmacy, I started it last night. I am also getting some form of cream that I need to have mailed. I'll try this routine for two months and then return (happily scheduled with Lady Pain Doc again and not the evil other doc).
I asked Lady Pain Doc if I may be looking at being on this new medicine for life. She said that, if it worked, it would likely be a lifetime thing. I'm not thrilled with that, but I'll do it if it gets me my life back. On the good note, it would, hopefully, mean I can eventually stop the other pain meds which would be really great.
emBODYment
So, my new word.
I think one of the challenges of chronic pain is the complex relationship it creates between the patient and her body. I have never been particularly healthy. As an infant, I got seriously ill after every round of immunizations and battled what was apparently a horrific case of diaper rash (Side Note: Apparently this required a diaper-free day and infant me greatly enjoyed the brush with nudism). The migraines hit pretty young, but it was the mysterious hives that first really started the feeling of being trapped in a malfunctioning body rather than just having my body be a part of me. The relationship grew more tenuous with the endo. I think women should be able to embrace their bodies and their womanhood, but the endo makes that really difficult to pull off the "I am woman, hear my roar" mindset.
And then there's the eating and body image issues. Those are really all about how one relates to one's physical being. My struggles with those demons made it difficult to feel at peace with my body. Binging was very much my soul and mind mistreating my body. Over-exercising wasn't really any better. I felt like my body was the primary element of "me". I have definitely improved in this light, but there's still a tendency to look in the mirror and fight with my reflection. This is especially true as I've lost the muscle tone that made me feel proud and helped me feel like I was in better harmony with myself.
Now, the struggle of chronic pain. Facing severe pain on a daily basis means feeling trapped inside a malfunctioning body. It is impossible to forget that I am a creature with a body. My body overwhelms my mind and soul. The pain gets bad enough that my mind can't operate fully. The mix of pain and medicine means there are times when I can't string a sentence together....a frustrating feeling for someone who likes to write. I still do some ghost-writing for attorney blogs but there are days when I can't get the focus I need because I can't think beyond the pain. Some days, I can fight. Other days, the pain is just too much and I succumb and the pain wins.
Chronic pain means being constantly emBODYed (and making up a version of a word to express it). I know that I am more than just my body. Knowing that is an accomplishment and an improvement from the worst periods of body image issues. But still, dealing with chronic, severe pain makes never forgetting that I inhabit a body, that I am, inescapably, emBODYed. Never being distinct from, or in charge of, my body is one of the biggest challenges of chronic pain.
UPDATE
I had a second round of diagnostic injections a couple weeks ago. The second doctor at the pain clinic had been on leave and I pretty much wanted to throw her a Welcome Back party when the appointment folks said she had returned. I knew it would be a better fit when she actually talked to me before the procedure and tried to make me feel less nervous. After being belittled for being scared the previous time I had needles poked in my spine, I took this as a good sign. I had about an hour after the injection where my pain dropped significantly. I put it at a 2 on the ever-popular 1-10 pain scale...I can't recall the last time I hit a 2. It only seemed to last as long as the anesthetic though, instead of having additional relief from the other meds in the cocktail.
I was able to schedule the follow-up with Lady Pan Doc. She never once made me feel attacked, which was amazing after feeling so belittled every time I saw the prior Pain Don. She said that the results really weren't what they would hope and that it indicated that it didn't make sense to move to ablation of the nerves. She suggested she approved of the pain meds I'm on (SUCH a change from being called a wimp and told to just deal w/ a daily level 8-9 pain unmedicated). I mentioned I really didn't want to need to use them for the next 50 years and she said I took the next words out of her mouth. I also said that the maintenance meds did help but I was still pretty bed-bound and I wasn't ready to concede that I'm going to spend the next 50 years in this state. She was completely understanding.
She wasn't sure what the next move would be but then mentioned that she figured I had already tried a different medication avenue. I had not, so we are trying a medicine that really targets nerve pain. She noted that patients have reported increased appetite on the medicine...people have put on weight but she said it was not the medicine itself but the increased food intake. Given my history, that makes me nervous and it felt like almost being asked "How bad do you want it (i.e. relief)?" After four months in bed, having to save up energy for a couple hours upright a week for dinner out or to see friends, the answer is clearly that I want it bad enough to deal with the side effect (Side note: Of course, the day before the appt I had ordered a bridesmaid dress based on my current size...the fact that my measurements landed me in three different sizes so I needed help from the store owner might be fodder for a future thought burst.).
The medicine can also make you a bit fuzzy at first so it is another one I need to build up over a few weeks...one week at one dose, one week at two doses, and then move to the goal rate of three doses a day. My online research has a lot of folks reporting good results with the medicine, though they noted they did have to wade through a transition time until they got used to it and the initial side effects faded. After a minor SNAFU (b/c it would be too much to ask that it work easily) of the script being sent to the wrong pharmacy, I started it last night. I am also getting some form of cream that I need to have mailed. I'll try this routine for two months and then return (happily scheduled with Lady Pain Doc again and not the evil other doc).
I asked Lady Pain Doc if I may be looking at being on this new medicine for life. She said that, if it worked, it would likely be a lifetime thing. I'm not thrilled with that, but I'll do it if it gets me my life back. On the good note, it would, hopefully, mean I can eventually stop the other pain meds which would be really great.
emBODYment
So, my new word.
I think one of the challenges of chronic pain is the complex relationship it creates between the patient and her body. I have never been particularly healthy. As an infant, I got seriously ill after every round of immunizations and battled what was apparently a horrific case of diaper rash (Side Note: Apparently this required a diaper-free day and infant me greatly enjoyed the brush with nudism). The migraines hit pretty young, but it was the mysterious hives that first really started the feeling of being trapped in a malfunctioning body rather than just having my body be a part of me. The relationship grew more tenuous with the endo. I think women should be able to embrace their bodies and their womanhood, but the endo makes that really difficult to pull off the "I am woman, hear my roar" mindset.
And then there's the eating and body image issues. Those are really all about how one relates to one's physical being. My struggles with those demons made it difficult to feel at peace with my body. Binging was very much my soul and mind mistreating my body. Over-exercising wasn't really any better. I felt like my body was the primary element of "me". I have definitely improved in this light, but there's still a tendency to look in the mirror and fight with my reflection. This is especially true as I've lost the muscle tone that made me feel proud and helped me feel like I was in better harmony with myself.
Now, the struggle of chronic pain. Facing severe pain on a daily basis means feeling trapped inside a malfunctioning body. It is impossible to forget that I am a creature with a body. My body overwhelms my mind and soul. The pain gets bad enough that my mind can't operate fully. The mix of pain and medicine means there are times when I can't string a sentence together....a frustrating feeling for someone who likes to write. I still do some ghost-writing for attorney blogs but there are days when I can't get the focus I need because I can't think beyond the pain. Some days, I can fight. Other days, the pain is just too much and I succumb and the pain wins.
Chronic pain means being constantly emBODYed (and making up a version of a word to express it). I know that I am more than just my body. Knowing that is an accomplishment and an improvement from the worst periods of body image issues. But still, dealing with chronic, severe pain makes never forgetting that I inhabit a body, that I am, inescapably, emBODYed. Never being distinct from, or in charge of, my body is one of the biggest challenges of chronic pain.
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