the last week of my yesterdays have been ……. what i have been expecting. my todays are hard to pin down. tomorrows are anyone’s guess. sunday left me thinking about what has been and what is to come. there are so many famous quotes and inspirational words that have been offered to make us ponder or recognize how fortunate we are.
all last week (and maybe before) just getting out of bed was almost too much. i had hoped to rally and keep a couple of engagements with friends. it didn’t work out though. most days i managed to drag myself to the living room by 3 or 4 in the afternoon, made it to bed somewhere after 4 a.m. but some days as late as 6 a.m. the thing that strikes me is very few people know or understand the exhaustion that goes along with heart failure. we can all identify with being very tired or in some cases exhausted but not to the same extent. there is something so fundamental even organic when you are feeling this that keeps it from being quite like anything else you have ever experienced. i often chide myself and say i am just being lazy. what else could make me lay in bed or this chair and wait to go to the bathroom until the last possible moment? or lay here so hungry, and know that being a diabetic i need to eat, yet not be able to? even the thought of eating makes me tired. all that effort for what? just gonna need to do it again later.
one day my man let me know that we were going somewhere the next day if i could. this seemed to mean something to him so i asked him to make sure i was up and had enough time to be ready. before we left he told me we could do it another day if i were too tired but i wanted him to have a good day so off we went. as we pulled in to the parking lot of our favorite tea room i felt like crying at how lucky i am. when we were shown to our table there was a bouquet of yellow roses on the table. these are my absolute favorites and yet i didn’t make the connection that they were for me. the smile on his face and the hostess beaming and saying “i think she is going cry” made me realize they were for me. by the time we were done all i could think was how great my life is and i hope we can go home now and take a nap.
that was a yesterday. these are not unexpected days. they have been waiting in the wings. we knew they were coming. well i did anyway, not so sure about him. he seems to have some magical thinking. if we just keep making plans then i can’t die, right? yesterday we made arrangements for a cruise in december. so we have a trip to the n.c. beach in october where we will watch wild horses. saturday is his birthday and we are having dinner with friends, the next day Heather is coming over to make her dad breakfast and he is very happy about that. the next week we have a reception for a sweet couple.
some days are just beyond my control. the mind is willing but the body is weak. sitting here tonight i am acutely aware of certain truths. being here is so much better than so many other places i have been. this man who loves me, family that i adore, friends that accept me as i am, cats who make me laugh and give me comfort. tonight i am inside while so many are on the streets, cool when others are not, loved and cared for as so many will be not just alone but lonely.
whatever my tomorrows bring i will be grateful. no moving quotes or words of inspiration, i am quite plainly grateful.
yes Aimee went to rehab today and she will be there for 6-8 months. I hope she continues to be optimistic and her support system stays in place. maybe that is what really makes the difference.
looking back it occurs to me that my blog has many entries focused on others without much tie in to myself. with some reflection, really not that much:), it is clear how that has happened. my life has been about others. as a nurse, there is the patient. as a therapist there is the patient and even as a professor/teacher it is about the students. most of us have others in our life that we give our love and support to. mom’s and dad’s have children, spouse’s have likewise, children have parents that may need their care. parenting never ends if you are lucky and then there are the grandchildren.
there has been little time to think about my own situation. situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.” it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point. although when i read of others and their struggles it reinforces my belief that we all have a story. as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.
recently though I have had things on my mind to write about, however, two things stopped me. one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer. it’s ok. to know what our gift is, is a blessing. when reading other blogs i am in awe of the creativity and flow of the story. the new goal for me is to remember and follow my true purpose in writing at all. as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog. future posts may be boring to some who now read my postings. there are so many more interesting people out there. those that become bored please do not feel the need to comment on said boredom.
word association has been of interest to me for years longer than my psychology career. how we go from one thought to another or retrieve unused but stored information in our brain fascinates me. even before my teaching years NLP ( neuro-linguistic programming) made perfect sense to me. over the past few years there have been many studies of how we store and learn information. while teaching, this gave me a way of helping students who were struggling, if it is understood how this individual learns and is taught in that form, there is a better chance of success. this is all relevant now as I am trying to decide what thoughts to lead with and how to keep them all in some relatable form.
the death of Christina Symanski has been a bit of gossamer that can’t be cleared away. the only way for me to move forward, is to put it in perspective. perspective is a word often used by those who don’t actually have the ability to use it. when speaking to someone who has gone through a life changing event the best thing is often to put this event in to perspective. recently a man was sharing with me that his mother had announced to him she had been molested as a child. he was quite off put by this and in his words “shut her down.” my advice was solicited and given. it would have been more productive if this woman could have sat with an old friend or therapist to discuss this event. if she still felt the need to share this with her son then she could do so from a position of perspective. he felt she had just dumped this on him. this goes back to how much do we share and with who? just want to add that in my opinion the recent news of boys being molested in her home town (Pennsylvania) was a contributing factor in her anxiety. having the chance to put this event in to perspective at the time would have aided her over the years. it still goes back to my question of what is the motive for telling someone about such an event? if it is just to make you feel better, stop and think this through. what do we want the outcome to be? more than one cheating spouse has said they had to tell the other as they deserved the truth. this has seemed a bit cowardly to me. some burdens must be carried by us alone, in my opinion.
there has been very little information regarding the passing of Christina. do we really need to know more? it is a tragedy her family and loved ones will have to find their way through. it is doubtful she could have lived for a month without food and water. food yes, water no way. does it matter if in her blog, looking back, that there were hints she might end her life? these were her decisions and no one else can tell us if our life is worth living. no one can give you a reason to be hopeful if you can not find one in yourself. this is a tragedy that is played out daily around the world yet we have given much time and thought to this one individual. is it due to her perceived good life? she was an artist and very active in the spinal cord injury community. does examining her life reassure us we would not do the same thing? we see a person who has been taken advantage of and say it wouldn’t happen to us since we are smarter and wouldn’t put ourselves in that position. the old “those people vs. us” theory?
in my search for others going through similar circumstances it has been my good fortune to find much more than that. it has been an inspiration to read of how others are caring for their loved ones with either terminal or life-long illness/disabilities. still others have the disability and are living their life to the fullest in their own way. so 2011 has come and gone. it was a good year and it leaves me hopeful for the next year to come. being hopeful is as important to me now as it has been throughout my life. that optimism has sustained me over the years and I trust that it will continue to do so. our hopes adjust to the situation. knowing my time is running out means I won’t be hoping for that promotion ( no longer working) or the big trip (no longer taking trips over a few hours and no flying at all). hope still lives here though, it is in the hope of being remembered, of leaving a legacy that will be passed on. the hope of still having some good days, being a good friend and companion to others, these are my hopes now. do I still make New Year’s resolutions? yes I do.
so now we come to the point of this post, making resolutions or not. this is a personal choice and yet I read with interest the blog hosted by Shane Hodge, the comeback. his post was regarding making these resolutions and what it says about us if we don’t. this man is on fire and has much to share with the rest of us. shane wrote a book by the same title and I am in the process of reading it. briefly what he shares is how he came to his own comeback. through conversations with his dying mother certain truths became more evident to him. his mother was able to leave this legacy due to his ability to hear what she was saying. this is my own hope to leave a legacy with loved ones that will be remembered. to know that your philosophy on life is being honored can be our greatest accomplishment.
after reading an article about resolutions shane wrote about his feelings and what this said to him. the poll said that more people are not making New Year’s resolutions, the reason given is they felt nothing could change for the better. they were expecting more pain and bad news for the coming year. the following is from the comeback site. “I’m going to sit down and write a nice long list of all the stuff that I no longer want in my life next year. I’m going to write a list of all the things I want to achieve next year, I’m going to create and commit to a bunch of New Years resolutions. Why am I going to do that? I will do it as I refuse to let “Oh Well” control my life and I can make sure that happens because? I believe in Miracles.” (from Shane Hodge w/permission)
this led to my own poll of who is making resolutions and why/why not? for now I am going to go rest and come back later. this is unusual for me to post more than once in a day but I have much on my mind now and this helps. the other reason is one of my cats, chloe, is making it very difficult to ignore her. posting a pic which is also new for me.
4 a.m. is a great time to work on the to-do list. by this time any hold out for sleep has passed, time to organize the cd’s or all those pesky plastic storage containers that disappear with the socks in the wash. if that is too much then it is on to the list. the mind boggles at the idea of some who seldom make such a list. it has been my habit for many years and has served me well in general. at the beginning of this journey one way to cope and put things in to perspective was to revert to the list. to my joy this has turned in to a multiple list job. vikto frankyl recommends we find the joy/purpose in our life and we will be able to face even the most devastating circumstances. if it was good enough for this holocaust survivor it seemed good enough for me. as the list has diminished some concern/thoughts turned to a quote stating that is when you know you are done with life. if there is nothing else you want to do (and I am hoping they mean the small things like waking up) then there is a void and death sneaks in to fill it.
it may be purposeful indeed how some items on my list are still outstanding. now after a conversation with my man it occurs to me how I can do something that will bring him joy in years to come. he often says he is not of this era and feels he has been left behind by technology. it would seem geekdom in our family belongs to me. as de-cluttering continues at a snail’s pace, it is apparent the old vhs tapes are not going to be donated and will not be enjoyed in the future unless they are converted to dvd’s. this it seems has made me almost giddy, do you know how long it is going to take to complete this task? I am not the kind of person who walks away from a job not finished and it is such a gift to add this to my dwindling list.
after christmas, sharing information regarding what a caregiver can expect from a terminal loved one is on the list. fascinating that a m.d. would think himself qualified to write this. it is almost laughable, it begins pretty strong and quickly goes downhill. this is not a person who has suffered personal loss. projecting some months to the new project and then there are always holidays, birthdays and …. well the list does go on. one more thing to be grateful for, think I will put it on my list:)