Aa
When do I die?
I am 64. I have had depression problems for decades. I have recently found another drug that helps a great deal. However, I still have severe problems. The reason is that I should long since be dead. I have at least 4 diseases that should have already caused my death. These include Hep C for 45 years, 2 hemorrhagic strokes in the last two years, a serious immune system problem that should have caused cancer long ago and a very rare and serious type of apnea that has cause a great deal of long term brain damage. None of these problems are treatable for me and all should have killed me long ago. Now, after the two strokes I most certainly should be dead but all I have is a minor problem with aphasic agnosia.
It is virtually certain that I will have another stroke in the near future and there is a 90% chance it will kill me soon. However, there is no certainly at all. I live in a remote area with no access to medical specialists that could do any meaningful testing or examinations. MRI is not available except an 8 hour drive from here and the wait time is over a year. I have no way to tell what my chance of death is in the near future or perhaps in a longer time (unlikely but unknown). How the heck should I deal with this? I know I will die earlier than I should but that could be tommorow or it could be several years or more. This is driving me into a hole that I have a very hard time dealing with. It is not ordinary depression that I have had from my bipolar type 2 but something different over which I do not have control, drugs or not. I have been married for 43 years and it is driving the both of us crazy. I hate the thought of leaving her alone. How do deal with this? Is there a way?
It is virtually certain that I will have another stroke in the near future and there is a 90% chance it will kill me soon. However, there is no certainly at all. I live in a remote area with no access to medical specialists that could do any meaningful testing or examinations. MRI is not available except an 8 hour drive from here and the wait time is over a year. I have no way to tell what my chance of death is in the near future or perhaps in a longer time (unlikely but unknown). How the heck should I deal with this? I know I will die earlier than I should but that could be tommorow or it could be several years or more. This is driving me into a hole that I have a very hard time dealing with. It is not ordinary depression that I have had from my bipolar type 2 but something different over which I do not have control, drugs or not. I have been married for 43 years and it is driving the both of us crazy. I hate the thought of leaving her alone. How do deal with this? Is there a way?
Why don't you work on your projects? I think it would be really good for you. Do it when you feel like it. The good thing about your kind of projects is you can work on them when you feel like it and leave them for later if you don't feel like working on them.
I have had a very good life even with the always present pain since the 70s. The pain doesn't matter much anymore, I am used to it.
It is leaving my wife that is the worst and that I cannot deal with. Actually dying is not a big deal to me. I have been close to it for a long time. Now it is far closer that it ever was.
We have had a wonderful life, both together and doing our own things. I am a person that would never hurt anyone and don't like to see even insects hurt. I very much like helping other people and have done so now and then for many years. Just this year I spent several months teach in young man with severe autism.
Since I am a very high level Asperger I know to a great degree what it is like. Nobody without such a different mind can ever really understand it. I do and we got along fine. I taught him how to draw even better than he already could. I also taught him to read at the best he could.
What really upset me is that the government cut off the funding for such work. It is now going to an orginazation that specializes in ripping off the recipients. I only charged a small amount, the organization is changing all the can. I used some of the money they gave me to buy things for my student.
We have gone many places including Europe a couple of times. We have friends and relatives in many places. I have canoed into the deep wilderness on a regular basis until I could no more.
I have taught children and adults in everything from learning to get along with others to computer programming to improve job skills.
My life has certainly been interesting with nothing to regret. I have little in the past to dwell on as a unhappy time. Unfortunately that is making it harder to accept what the near future will bring.
It is leaving my wife that is the worst and that I cannot deal with. Actually dying is not a big deal to me. I have been close to it for a long time. Now it is far closer that it ever was.
We have had a wonderful life, both together and doing our own things. I am a person that would never hurt anyone and don't like to see even insects hurt. I very much like helping other people and have done so now and then for many years. Just this year I spent several months teach in young man with severe autism.
Since I am a very high level Asperger I know to a great degree what it is like. Nobody without such a different mind can ever really understand it. I do and we got along fine. I taught him how to draw even better than he already could. I also taught him to read at the best he could.
What really upset me is that the government cut off the funding for such work. It is now going to an orginazation that specializes in ripping off the recipients. I only charged a small amount, the organization is changing all the can. I used some of the money they gave me to buy things for my student.
We have gone many places including Europe a couple of times. We have friends and relatives in many places. I have canoed into the deep wilderness on a regular basis until I could no more.
I have taught children and adults in everything from learning to get along with others to computer programming to improve job skills.
My life has certainly been interesting with nothing to regret. I have little in the past to dwell on as a unhappy time. Unfortunately that is making it harder to accept what the near future will bring.
Dear E: Some days I feel I live in a big pain bubble, besides fighting PTSD and diabetes (I will not talk about a few more or we'll all get depressed). We know it is not easy and sometimes we ask WHY ME? Then I see a St. Jude or hungry kids in some very poor area announcement and am grateful for the life I've had. Nowadays had to move 3,000 miles to a state I knew nothing about, leaving half of my heart (a daughter and my grandaughter) behind, waiting for my social security checks to start. Until, my beautiful son and his family are backing me up. Ah! No medical plan yet; lots of tests on hold. BUT, do continue with your work or hobby...I have my books, love music and looking out the windows when going out to buy my things in this beautifull desert make me feel God is real, and when "the roll is called up yonder" HE will maybe explain why all this suffering upon us since our little eyes were opened. If not, anyway by being in his presence, no pain, no tears for eternity, will we be rewarded. In the meantime, it's 2:21am and I woke up and included you and your wife in my prayers...it must have been hard on her too: my "partner" for 22 years, a very intelligent man, so bright, died of Atzheimer a year ago. And that was a very cruel disease on me. See? But I got up from being in very poor physical, economic and emotional conditions, took very hard decisions and got myself with 2 suitcases in an airplane...leaving everything else behind, hope I can visit my grandaughter next year. I believe I can adapt to this way of life with my son's help. As I told you before, take it day by day, some not so good, some I cry a lot, BUT like I say: tears are the heart's sanitizer...they need to be applied periodically. God bless!
In the 1969 Film, Paint Your Wagon, the character played by Lee Marvin, said this...."There's two kinds of people, them goin' somewhere and them goin' nowhere. And that's what's true."
What we focus on is exercised and becomes stronger. When we focus on regrets and lost chances and old dreams, those thoughts make a home in our brain and replay over and over and over, like a skip on a record that you might have owned in the 70's.
If you think rationally about it, when you were born, you came into this world with nothing, not even a tie or a pair of pants, and yet we don't sit and ruminate on that incoming as a loss or a negative thing. Its just the way it is and it happens to everyone.
When we die, we take the same thing with us that we are born with.
Nothing. Yet those thoughts cause us much distress and depression.
Its just the way it is and it happens to everyone.
I too have rooms with all sorts of wonderful things I have collected over the years. I am also a photographer and my PC holds thousands of images that I captured and still look at today. I have tools and beads and dremel tools and still try new things everyday to keep my mind occupied and revved up and I too do not know when I will die. It could be today, it could be tomorrow, but if I don't do a project, I will still die. I will die either sitting in my chair worrying about dying, or making a really neat collage of images in my photoshop that maybe someone, anyone will appreciate some day down the road.
Today I went online and registered for free classes at MIT and then saw where Yale and Princeton are also offering free online classes...I am checking them out tomorrow...Imagine that, when I did go to college so long ago, MIT and Yale were only a dream that I never aspired to and now, they are welcoming me to come and study.
There is so much to be grateful for and I do hope you can make a list of your own gratitudes and share them with us here.
I do wish you the very best that life has to offer....
M
What we focus on is exercised and becomes stronger. When we focus on regrets and lost chances and old dreams, those thoughts make a home in our brain and replay over and over and over, like a skip on a record that you might have owned in the 70's.
If you think rationally about it, when you were born, you came into this world with nothing, not even a tie or a pair of pants, and yet we don't sit and ruminate on that incoming as a loss or a negative thing. Its just the way it is and it happens to everyone.
When we die, we take the same thing with us that we are born with.
Nothing. Yet those thoughts cause us much distress and depression.
Its just the way it is and it happens to everyone.
I too have rooms with all sorts of wonderful things I have collected over the years. I am also a photographer and my PC holds thousands of images that I captured and still look at today. I have tools and beads and dremel tools and still try new things everyday to keep my mind occupied and revved up and I too do not know when I will die. It could be today, it could be tomorrow, but if I don't do a project, I will still die. I will die either sitting in my chair worrying about dying, or making a really neat collage of images in my photoshop that maybe someone, anyone will appreciate some day down the road.
Today I went online and registered for free classes at MIT and then saw where Yale and Princeton are also offering free online classes...I am checking them out tomorrow...Imagine that, when I did go to college so long ago, MIT and Yale were only a dream that I never aspired to and now, they are welcoming me to come and study.
There is so much to be grateful for and I do hope you can make a list of your own gratitudes and share them with us here.
I do wish you the very best that life has to offer....
M
You would surprised and amazed if you saw my brain. I am. I have well over 100 microbleeds, a significant amount of white matter pathology as well as the two hemorrhagic strokes. I also have at least one aneurysm and may well also have Arteriovenous Malformation (AVM) according to my neurologist. He is the doctor I really need to see but it is an 8 hour round trip. He also says he has no reason to see me again. Sigh.
What is really getting to me is that I always have things to do and more planned. I have a machine shop that I have had for decades and in the last decade I have equipped it with many easy to use motorised automatic systems so I can still run it. I am also a computer nut and I very much enjoy working on my computers. I wrote my first program in 1964 or so.
When I croak the computers are no big deal other than containing my very large image collection of my own photography especially from my observatory.
What really bothers me is what to do in respect of my other projects, especially in my shop. I want to use it but starting a long 1 or 2 year project does not seem like a good idea. It can cost a lot of money over time and it doesn't seem wise to spend it.
When I go down to my shop in the basement I often look at all the neat stuff I have collected to build things. Then I think how slim the chances are that I will have much time to do so. Then I start crying hard and cannot stop for a long time, sometimes hours. It makes no difference at all what drugs I have, it is times like that when nothing at all can stop my severe upset with my situation.
I have no idea what to do at times like this. Nothing will lift me out of the very deep hole I get into. It can take days to gradually come back to more or less "normal". For me "normal" means somewhat less constant physical pain and not very depressed, sort of.
I very much appreciate the advice from all of you. There are nearly no opportunities for this sort of conversation here. It is making me feel somewhat better.
What is really getting to me is that I always have things to do and more planned. I have a machine shop that I have had for decades and in the last decade I have equipped it with many easy to use motorised automatic systems so I can still run it. I am also a computer nut and I very much enjoy working on my computers. I wrote my first program in 1964 or so.
When I croak the computers are no big deal other than containing my very large image collection of my own photography especially from my observatory.
What really bothers me is what to do in respect of my other projects, especially in my shop. I want to use it but starting a long 1 or 2 year project does not seem like a good idea. It can cost a lot of money over time and it doesn't seem wise to spend it.
When I go down to my shop in the basement I often look at all the neat stuff I have collected to build things. Then I think how slim the chances are that I will have much time to do so. Then I start crying hard and cannot stop for a long time, sometimes hours. It makes no difference at all what drugs I have, it is times like that when nothing at all can stop my severe upset with my situation.
I have no idea what to do at times like this. Nothing will lift me out of the very deep hole I get into. It can take days to gradually come back to more or less "normal". For me "normal" means somewhat less constant physical pain and not very depressed, sort of.
I very much appreciate the advice from all of you. There are nearly no opportunities for this sort of conversation here. It is making me feel somewhat better.
For having brain damage you sound very coordinated. I believe you both have gone through a lot like me, but my spiritual beliefs have gotten me alive till my 62nd birthday, hopefully with that and around 8 pills and insulin shots 3 times a day I' ll live longer to see my little 3 grandchildren grow. With the healthcare plan proposed here we not so old people will be confronting your same problems. Have faith...get support from friends or family or right here. Maybe we go to rest tomorrow, maybe in 15 or 5...nobody knows. Still take each day one at a time, look around at beautiful things...God bless you and keep us posted!
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