yesterday we decided to go for a drive in the country. our first stop is the local southern eatery the cracker barrel. over the years we have lived here it has been our pleasure to meet and get to know the women who are servers. when we go in the servers will take a moment to hug us and ask how we are. we ask about them and their families, these moments are special to us.
some of the women had read our status on facebook and let us know they were glad we did not try to drive in the bad weather to charleston. to know that they care means more to me than they know. if i ever have a day when i feel like i have lost friends over this illness or that i don’t get to be out as much as i would like, it just takes a visit to the barrel. many of these women have had great tragedies in their life and yet they show up for this job and smile.
yesterday i was feeling a bit down, within minutes of entering the dining room we are warm and feeling the love. one of our favorites who became a friend to us was ours today and she is such a sweet young woman. on my way to the ladies room i was stopped by three or four women asking me how we are and telling me how they are doing. there are hugs and smiles to go around.
these women would never know that i am not a big hugger. over the years i have opened up more to these expressions of caring and warmth. of course i think my grandchildren have made me more expressive physically. children were never a problem, it always seemed natural to open my arms to them. i even had one grandchild that looked at me and said they were not going to sit in my lap because they always fall asleep when they do. we all just laughed, it was true. my charleston babies like “the nook” and i love to have them cuddle up to me.
we may have missed thanksgiving with the family but we still felt the warmth of what that truly means. for us our drive on friday began with friends who treat us like family. along our drive we talked about how wonderful our life is and how grateful we are for our life.
if you just stop a moment and think about it, isn’t life an amazing, truly amazing concept? just the whole living breathing thing is a bit over-whelming if you think about it. add to that all the conveniences that we enjoy in our daily life. we had friends and family that through phone calls, texts and online, let us know that they were thinking of us and wished us good tidings. how lucky are we? the gifts of love and life are the only gifts we need. really they are the only gifts we want. in this season of shopping and looking for the perfect gifts i feel blessed to realize the gift of life and love are all i need.
there has been some conversation regarding the like button. since the first time i read a blog this has bothered me. if i press like does it mean to that person what it means to me? at times i have struggled not to explain what the like button means to me. should i use valuable space and time saying what the person surely knows? what if they don’t know? when are we called upon to be more than a click person and give our honest input?
in the beginning i noticed the occasional hurt feelings as a comment was a bit too honest for the blogger. if we are not inviting honesty then why have a like button or a comment section? we don’t have to allow either do we?
i find that a reality check for myself is often what i am looking for. if someone agrees then i feel validated which is very nice, if i receive a comment that was unexpected it gives me pause. i for one appreciate knowing that a comment is not some rubber stamp given without much thought. knowing that someone has taken the time to think about what i am sharing and cares enough to risk an opinion means the world to me.
one commenter that has at times taken me to task is laurie. she asks the hard questions and let’s me know that she doesn’t see my way of thinking working for her. i appreciate that, i am not so unsure of myself that everyone needs to agree with me..
on the other hand i would be dishonest if i didn’t say here that i so appreciate knowing i have friends here who support me. i just think you can be supportive and honest at the same time.
this whole like button issue is more of a nuisance than not. if i don’t press it will someone think i didn’t like their post? are we over-thinking the whole like button thing a bit too much?
well, like scarlett o’hara, i will think of this another day. due to bad weather we were not able to go to charleston and be with family for thanksgiving. of course being raised in native tradition it was not one of our “celebrated” holidays as i was growing up. it is only in my adult years that i make the effort. so let’s just hope i don’t set the oven on fire yet again, the last few times i made turkey that is what happened.
today as always i am grateful for so many things, my family and friends being right at the top. hope you can click the like button for that:)
November 21, 2013 at 5:05 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, psychology today magazine, the dr. says, waiting for the end)
it has been quite a long time since i have looked at the psychology today magazine. i had forgotten how disgraceful this ad magazine is. every page has at least one ad on it. i understand that ads keep a media such as this alive. we have all become a bit lackadaisical about supporting this kind of trash.
tonight we went to barnes and noble. we frequently visit this bookstore. one of our favorite eateries is nearby and so we wander over to b & n as part of our trip. so tonight was just one of our regular visits. while waiting for chris to come and sit, i grabbed this magazine..
anyone interested in psychology has access to this magazine. they may be expecting to learn something of value. to gain some insight or understanding they didn’t have before reading this rag. unfortunately if someone were to take any of the articles to heart they would be misinformed i fear.
the first article that caught my attention was about addiction. the theory shared here is that we (psychologists) have done damage to those who have addictive behaviors. if we (the psychs) have used the theory that addicts are not in control of their behavior as a result of being “powerless” over drugs, gambling, food, sex or other parts of their life then we have harmed them. according to the author telling someone they are powerless is what makes them turn to other addictions and to be out of control. this author believes addicts are in control and are not weak. it is our responsibility to find out what triggered the addictive behaviors so they can stop.
this feels like such a horrendous disservice to our patients. those who have been successfully through the 12 step-programs would know how important it is to not start thinking they have control over their addiction. i am just hoping that not too many addicts are reading this magazine.
the field of psychology has to constantly fight the erroneous thinking that therapy is not a science. it is in my opinion it is a combination of art and science. neuropsychology is a prime example of this.
also included were the 7 habits of people who are well-balanced and happy in life. this would lead some to believe if they just do these 7 things they will be mentally stable and happy in their life. those of us who are happy and healthy mentally know just how wrong this is. even when we are doing all we can the universe may have something else in mind. that is just how random life is.
life and death are so much more complicated and individually designed than this article implies. in the end we die the way we lived according to this magazine. this is true for some and not so for others. one article asks what we owe to a parent who has been difficult. i don’t believe “owing” has anything to do with this. those of us who have cut these ties do not act as though we owe these parents. some do it out of guilt, either as an individual or as part of some religious indoctrinization. included is an article regarding saying no. it is said this is empowering. as someone who learned to say no i will agree with this. saying no is again a personal journey. if someone is not at that stage in their journey are they less powerful?
we are only as powerful in life as we believe ourselves to be. whether you can say no or not, whether you take care of an ailing parent who was not a good parent, whether or not you are an addict.
this article also espouses that we die as we have lived. i can only speak for myself when i say i have chosen to die as i lived. other’s will come to this path and decide to die as a better person. they can choose to be more kind, loving and compassionate. i just hope they don’t read this magazine.
November 18, 2013 at 11:13 pm (Uncategorized) (caregivers and sex, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, living with dying, the dr. says, waiting for the end)
thursday night i could not sleep. it finally came for me near 6 a.m.
friday was lost to me. my dear man checking on me and bringing me water so i don’t become dehydrated. i wake at 4 a.m. returning to bed at 6 a.m. once again.
saturday afternoon i am up and then down again. the pain in my back and legs becoming unbearable at times. my spinal cord injury beating out my heart for attention. he gently rubs my legs, trying to give me some relief if only temporary. falling asleep in the recliner then on to bed. he is there waiting for me. his hand reaches for mine. his touch reassuring me that i am loved. i return to that lost land of sleep knowing he will be there in the waking hours.
sunday morning i rise but cannot seem to really wake. he makes us his famous waffles, a friends’ son once told him he could work for waffle house, and we indulge with our blueberry syrup from Maine. we watch one of our favorite movies, Dinner at Eight. together, hand in hand, we stroll back for a nap. up again by sheer force of will. this time it is i who makes our meal. i push through the fog that threatens to take me back to sleep and we enjoy my efforts. i hold on to hope and optimism that tomorrow will be a good day as i am off to sleep at a decent hour.
monday did not meet my expectations. my hope was to rise by 11 a.m. and spend the day with my love doing whatever he wanted. again he is rubbing my legs to relieve my pain. i drift in and out of sleep. finally i am up if not alert.
i read the blogs i am able to. following the life stories of those i have come to care about. one young woman writes that men leave women with chronic illness. it seems to her that sex is more important to men and so they eventually look for that need to be met outside of the marriage. this hurts my heart to read. this is not my experience. my husband has been by my side, through the good times and the bad for 21 years. i know of other men who love women who are ill and they value their companionship over all else. it makes me sad for the ones who think that is why these men leave. if they are leaving for such a shallow reason it occurs to me they would have left at some point regardless of the illness.
many men are kind and caring caretakers. they do what they can to ease the pain both physical and psychic of the ones they love. women do not have the market cornered when it comes to love and commitment. there are women who leave men when they become incapable of fulfilling their expectations. the person leaving is judged as selfish and unloving. sometimes the reality is just some people are not capable of giving more. not that they are bad people, just that they are not strong of character.
tonight i sit here with the loving, caring man who stays by my side regardless of this disease that robs us of time but not our love. i only wish other’s would have this kind of love and caring in their life. if i could reach out and give other’s this love i most certainly would.
November 14, 2013 at 8:59 pm (Uncategorized) (death row inmate donates organs, end stage congestive heart failure, how does it feel to die, living with dying, organ donation, the dr. says, waiting for the end)
from the beginning of this journey i have intended to donate my organs. i had signed the paperwork to donate my whole body to medical science. it sounded like a good thing to do. all my husband had to do is call them when i passed on. they would have my body picked up and return the cremated remains when they were done. all of this would have been at no cost to my family.
as time has passed more of my organs are affected by disease and so there is nothing left of value to donate. no one will get a new kidney or lung from this tired old body. for that i am sad. it would have been a gift to someone else and give my body more value to me.
with so many on the waiting list for organs to be available, so they may live on, it seems a shame that more people aren’t signing up for organ donation. so i was surprised to read of a death row inmate who wants to donate his viable organs is being told it may not be possible. he has been sentenced to death and has requested to donate to family members with serious health issues.
this opens up a whole other conversation, why aren’t we making that an option? why not let a person who has the desire to do in death what they could not do in life donate their organs? why deny them the opportunity to be a good human being?
the following is an excerpt from the article i was reading online:
Ohio’s governor on Wednesday delayed a condemned child killer’s execution to study the feasibility of allowing the man to donate his organs to ailing relation.
Phillips was sentenced to die for raping and killing his girlfriend’s 3-year-old daughter in Akron in 1993, and was scheduled for execution Thursday.
But Kasich said that while Phillips’ crime was heinous, his willingness to donate organs and tissue could save another life and the state “should allow that to happen.”
Phillips indicated the request was not a delay tactic, but an attempt to make a final gesture for good.
State officials denied the request on Tuesday, saying a host of logistical and security issues made it unworkable. A spokeswoman said the department moved swiftly to evaluate the request but determined it was not equipped to accommodate pre- or post-execution organ donations. An earlier kidney donation may have been possible under prison medical policy, but Phillips never requested one, they said.
November 11, 2013 at 1:54 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, fear of death, heart failure and exhaustion, how does it feel to die, life after death, living with dying, the dr. says, waiting for the end)
Our thoughts on death reflect the way we live our life. this is my firm belief. so when i say that i don’t fear death i hope you can understand this is how i live my life.
in its simplest form i see two options. one theory is we die and go to heaven or hell, the other is we die and nothing happens. of course some people say there is a third option and i am certainly open to it. some believe we are living out a mission and we are born and die in order to complete that mission. if we cannot accomplish the mission in this life we choose to die so we can be reborn.
the way i see it these are all a win win situation. well the heaven and hell one may not work out so well for me. i have not believed in the christian god and that would disqualify me for heaven. the fact that i have been a good person means nothing. this is not my favorite option for obvious reasons. i have been and continue to be a spiritual person. giving love and compassion whenever possible. just trying to be a good human bean. i am not afraid to die and be judged. i will not apologize for living the way i have. i don’t fear this even though some might think i should.
if we die and there is nothing then it isn’t something to fear. i will just be gone and so there will be no pain. there will be no recriminations from a higher being. i won’t feel the pain of knowing my family is suffering. that is the one thing i fear. i fear for them. i know it is their burden to bear. i know they will be fine in time. they will have the memories we have built and cherish.
if i am here to complete a task maybe that is why i am still here. i don’t know that i can fully accept this option. if this is true then why do babies die? they haven’t had time to know if they can do what they are here for. it is comforting to think i have a purpose while i am here.
the way i look at it my purpose has been and continues to be the drive to be that good human. to do no harm is the oath and i believe that applies to us all. when i joined the military i took an oath. we accept many responsibilities in that oath. as members of this race we don’t take an oath but we have our social contract. i will never lose purpose therefore i will never be done so ….
my time is coming but i choose to die the way i have lived. i will not fear death. death is just the end of this journey. who knows if there are more journeys waiting. i don’t want to waste this one life, it may well be our only life. our one journey. my journey has not always been smooth but it has led me to where i am now and that is a great and wondrous place.
November 7, 2013 at 11:38 pm (Uncategorized)
a few weeks ago i had to get a new phone. so far i have not explored all the little gadgets that come with the new phone.
today was a sleep marathon. i had an appointment to get my hair done at 3 pm. bleary eyed i realized it was 2:51 and felt terrible that i was going to cancel the appt.
my phone, gratefully, has a feature that let’s you record your message. in this state i am incapable of viewing the teeny keyboard. so i push what i believed to be the little picture of a microphone. i start speaking, expecting to send it as a text.
i wanted to say “i am sorry i can’t make it today.” well actually that is what i said. as i am getting ready to send the text i hear a voice, “you don’t have to apologize to me.” this seemed surreal but i found myself saying thank-you.
on these days i feel as though i am letting those around me down. especially if i have to cancel an appointment. so to hear this voice saying i didn’t need to apologize surprised and pleased me.
then i realized it was “siri” on my new phone speaking to me. those words meant so much to me at the time. thank you siri for reminding me that this is not a fault of mine rather a condition i have no control over. thank you siri for your kind words. i got a laugh and some relief.
November 2, 2013 at 1:01 am (Uncategorized)
I have made many friends in the blogosphere, one of whom is Sandra Callahan. She is wise and funny and positive and she and I share some very similar experiences. We have supported each other through many ups and downs and yesterday she made a comment on my post that compelled me to rethink yesterday's doctor's appointment with Anthony during which he described his dreadful terror the night before as 'a bit of fun'.
i woke up this morning and asked myself, is this really sunday? the past couple of weeks i have been sleeping almost all the time. in the past this only lasted a few days at most. this time it was almost 2 weeks. i tought somehow planning to have people over would get me back on track. what was i thinking?
when i didn’t rally as i had hoped he was so kind and caring. told me we didn’t have to do it. we could go out with them or if i was too tired we could just get take-out. i just could not let him down.
so long story short, i decided not to take my meds the night before. i slept a couple of hours just before i was going to get up but just pushed on. he offered to cancel or to take everyone out. i was determined that things go well and they did. the price was almost more than i could pay. in the end i have no regrets. it was fun to talk and laugh with friends. after the guests, our friends, left i sort of collapsed into the recliner. it was a good tired, i was happy to be tired.
that was this past thursday, i have slept almost non-stop since then. today was better and i am hoping for the same tomorrow. i slept all day yesterday, got up around 5:30 and we had dinner together. when it seemed i could go back to sleep when he went to bed i decided to go. thinking i would be up in a couple of hours i just wanted to be with him so off to bed i go. i did wake up but went back to bed. today we were able to spend more time together. that is what i miss, i miss hanging out with him. miss talking to him, holding hands. the sad thing is i know he misses us too.
we went to dinner tonight and he was beaming he was so happy. once while we were out he said “that’s because i am so happy.” he doesn’t want to do much without me. i suggested he go to barnes and noble but he says he doesn’t want to go without me. this is the hardest thing for me. it breaks my heart to think of him without me. maybe it will be easier if/when i am not here.
for now i am going to do my best, no matter how tired i am, to be with him at least a couple of hours each day. this is where the leaving gets hard. in some ways i am already leaving. i used to wonder if losing someone was easier if it was quick or slowly. now i think quick is better. that way you don’t watch someone you love slipping away before your eyes. that way you don’t have to know they are missing you and you aren’t gone yet.
yes it is sunday. we had a good day. tomorrow will be another day and maybe we will go to barnes and noble together. yes i think we will.
October 24, 2013 at 12:47 am (Uncategorized) (being remembered, congestive heart failure, end stage congestive heart failure, hope changes, how does it feel to die, kubler-ross, living with dying, the dr. says, the steps of grief)
in the beginning i just wanted to leave a journal that my grandchildren could look at and know who i was. i wanted them to understand who i was and how much i loved them and life in general.
as time went by and i looked for information about my condition and the strange things that were happening. i discovered that the medical community either didn’t know these things were related or just didn’t tell us about them. so i thought let me share and see if anyone else is going through this. at some point i wondered if there were others out there feeling the same as i was.
there was nothing out there for me to read. no one seemed to be talking about how it feels to die. i had read the kubler-ross books, i worked with dr rosalind shepherd who assisted her in researching what became her book. they were of no use to me. the stages of grief, some swear by them. they have some universal truth as many theories do. not all experience them and most not in that order. unless you are one of the classic cases then you may be a little confused when you read the order and it doesn’t relate to you.
i don’t know when but at some point i realized i could offer some support to other’s going through this. it has given me purpose, it has given me an opportunity to connect with others who are in my shoes or have a loved one in my shoes. the gift of friendship i have received has been priceless.
so like most things in life this journey has changed along the way. i still believe my family can look at this and know that i have been/am happy and grateful for each and every day.