In Memory of Patrick Kelly/hubcap_halo
- Thread starter Phoenix Rising Team
- Start date
Cort
Phoenix Rising Founder
- Messages
- 7,392
We've just started an action to get the FDA to produce a stakeholders meeting designed to figure out a way to approve drugs for CFS more quickly...You can find it: http://forums.phoenixrising.me/content.php?557-Accelerating-Treatments-For-ME-CFS-A-Call-to-Action-for-the-FDA
Don Quichotte
Don Quichotte
- Messages
- 97
I may be wrong, but I think that the recovery process can be hard as well.
Mostly if it is after a long illness, when recovery no longer seemed possible (although very much longed for).
It is relatively easy to understand the pain and difficulties of being ill, but people fail to understand the difficulties in recovery. Recovery is a hard and painful process, which is expected to be elating. It is initially, but can become very overwhelming.
There are many reasons for that. One is that recovery for a person who was severely disabled in someway means significant physical and emotional adjustment. As is exemplified by a blind man being able to see again-
http://www.sfu.ca/media-lab/archive/2007/387/Resources/Readings/sacks_toseeornottosee.html
Another is that recovery means for most people going back to your normal life, but there is a painful realization that this normal life is no longer there.
It's like being locked in a dungeon for many years and longing for the fresh air and beautiful world you lived in before (which many times you took for granted when being there), and then gradually finding the way to climb out of the dungeon, getting a glimpse of that world, and then slipping down again (because recovery is never a straight linear line, and involves ups and downs). Seeing that promised land (which you have almost lost hope to ever see again) only makes you long for it more and motivates you to use every bit of your limited energy to climb out of that dungeon and not fall into it again.
And then finally after that long and daunting climb, that took every bit of energy you had left, you are finally there, only to find out that the beautiful trees you have planted and your house have been taken away and all the things you have longed for while in your dungeon have to be rebuilt again.
This is a very vulnerable period in which you appear to be doing much better, while dealing with what is one of the hardest things possible-Coming to terms with the fact that the recovery you have longed for and was ready to do everything possible to get, may require significant adjustments and is only the first step in rebuilding your normal life again.
It takes time to realize that you have not lost your talents, and that after you rest from that long time in the dungeon and the exhaustion from the trip of getting out of there, after getting over some disappointments, you can slowly build your house and plant possibly even more wonderful trees again. (You can in fact build that beautiful dream house, you have been thinking about so many times while in your dungeon).
many physicians know this "paradox" - patients who respond well to treatment and have significant improvement in their condition, instead of being happy become depressed.
The length and severity of the illness, the difficulties in the treatment, the ability to return to the life one had before or find other (sometimes better) options, the support in doing so, the size of the gap between the kind of life you had before you were ill and the kind of life you could lead with your illness, all determine how hard the recovery is. And many of those factors are not under our control.
I think it is a very vulnerable period, in which patients need a lot of support in order to have a true recovery.
I also think many patients find it hard to admit (even to themselves) how hard (what is supposed to be wonderful) can be. It makes them feel that something is wrong with them.
This does not mean that true recovery is not possible. It just means that it is a much harder and longer process than it seems.
modern medicine and society don't give place for recovery. They want an "instant" healing process.
This is not possible even for a minor viral illness and definitely not for an illness of many years.
In fact, I sometimes ask myself if one of the reasons for the significant increase in various chronic diseases (including CFS), is not that we don't give people enough time to heal from an acute illness.
Mostly if it is after a long illness, when recovery no longer seemed possible (although very much longed for).
It is relatively easy to understand the pain and difficulties of being ill, but people fail to understand the difficulties in recovery. Recovery is a hard and painful process, which is expected to be elating. It is initially, but can become very overwhelming.
There are many reasons for that. One is that recovery for a person who was severely disabled in someway means significant physical and emotional adjustment. As is exemplified by a blind man being able to see again-
http://www.sfu.ca/media-lab/archive/2007/387/Resources/Readings/sacks_toseeornottosee.html
Another is that recovery means for most people going back to your normal life, but there is a painful realization that this normal life is no longer there.
It's like being locked in a dungeon for many years and longing for the fresh air and beautiful world you lived in before (which many times you took for granted when being there), and then gradually finding the way to climb out of the dungeon, getting a glimpse of that world, and then slipping down again (because recovery is never a straight linear line, and involves ups and downs). Seeing that promised land (which you have almost lost hope to ever see again) only makes you long for it more and motivates you to use every bit of your limited energy to climb out of that dungeon and not fall into it again.
And then finally after that long and daunting climb, that took every bit of energy you had left, you are finally there, only to find out that the beautiful trees you have planted and your house have been taken away and all the things you have longed for while in your dungeon have to be rebuilt again.
This is a very vulnerable period in which you appear to be doing much better, while dealing with what is one of the hardest things possible-Coming to terms with the fact that the recovery you have longed for and was ready to do everything possible to get, may require significant adjustments and is only the first step in rebuilding your normal life again.
It takes time to realize that you have not lost your talents, and that after you rest from that long time in the dungeon and the exhaustion from the trip of getting out of there, after getting over some disappointments, you can slowly build your house and plant possibly even more wonderful trees again. (You can in fact build that beautiful dream house, you have been thinking about so many times while in your dungeon).
many physicians know this "paradox" - patients who respond well to treatment and have significant improvement in their condition, instead of being happy become depressed.
The length and severity of the illness, the difficulties in the treatment, the ability to return to the life one had before or find other (sometimes better) options, the support in doing so, the size of the gap between the kind of life you had before you were ill and the kind of life you could lead with your illness, all determine how hard the recovery is. And many of those factors are not under our control.
I think it is a very vulnerable period, in which patients need a lot of support in order to have a true recovery.
I also think many patients find it hard to admit (even to themselves) how hard (what is supposed to be wonderful) can be. It makes them feel that something is wrong with them.
This does not mean that true recovery is not possible. It just means that it is a much harder and longer process than it seems.
modern medicine and society don't give place for recovery. They want an "instant" healing process.
This is not possible even for a minor viral illness and definitely not for an illness of many years.
In fact, I sometimes ask myself if one of the reasons for the significant increase in various chronic diseases (including CFS), is not that we don't give people enough time to heal from an acute illness.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
Like so many other folks here, I certainly understand being so exhausted by the daily struggle for survival that a person just can't take it anymore. It speaks volumes about the barbaric, uncaring nature of U.S. institutions that chronicly ill people have to resort to the 'ultimate cure'.
I've had two remissions in the past four years. I'm extremely grateful for every minute of those precious few weeks when I was able actually do stuff.
In 2008 I was much better for about three months - long enough to finish a foundation I started in 1989 (very long story, not related to ME/CFS), buy a used trailer house, prepare it for transport, and set it up. If I hadn't been able to do that work, I would certainly be homeless, and likely dead, because there is no way I could be this sick and live under a bridge.
I agree it is very frustrating and depressing when the remission ends, but the very fact of the remission indicates to me that although there is something very wrong, the basic mechanism of my body is still very functional. And that whatever is wrong can be found, and fixed, if the medical industry wasn't so arrogant, judgemental, greedy, and just generally f'ed up.
Patrick, thankyou for all your work on our behalf.
I've had two remissions in the past four years. I'm extremely grateful for every minute of those precious few weeks when I was able actually do stuff.
In 2008 I was much better for about three months - long enough to finish a foundation I started in 1989 (very long story, not related to ME/CFS), buy a used trailer house, prepare it for transport, and set it up. If I hadn't been able to do that work, I would certainly be homeless, and likely dead, because there is no way I could be this sick and live under a bridge.
I agree it is very frustrating and depressing when the remission ends, but the very fact of the remission indicates to me that although there is something very wrong, the basic mechanism of my body is still very functional. And that whatever is wrong can be found, and fixed, if the medical industry wasn't so arrogant, judgemental, greedy, and just generally f'ed up.
Patrick, thankyou for all your work on our behalf.
You learn to be really casual about death. I'm not shocked at all. Who among us hasn't seriously thought about some way to hurrry the final exit. The mind wanders- gee, how could I do this painlessly, efficiently? Maybe I'll get some fatal disease, be lucky enough to die quickly. It's grim. How could come to this? I hope no shrinks a reading- we'd all be committed. RIP Patrick.
Don Quichotte
Don Quichotte
- Messages
- 97
I think you are right, that what is seen as cure, is not really so. Many times what we "fix" is not enough. Sometimes seemingly cured patients pay for the aftermath of the damage caused by the same treatment which cured them. The problem is that even if we do know the root of the problem, we can't always solve it.
The same treatment which cures childhood leukemia also leads to some irreversible damage to the child's developing brain. Possibly if we were able to find the biological event that caused the leukemia to begin with we would be able to give much more effective and less damaging treatment. But, unfortunately, we are not there yet.
We can perform cataract surgery that will enable light to reach the retina, but we do not have the ability to create the brain synapses which are required in order for that person to properly see and use this data to navigate the world around him.
I agree that there is no true paradox, that is why I put it in "..." . This seeming paradox is the result of physicians looking at certain parameters that have clearly improved, without seeing the full picture.
But, I also think that modern society is not tolerant to the suffering of people who are considered cured from their illness. It gives a "fixed" time for the recovery process, which may not be enough for some.
For instance-survivors of cancer are expected to go back to their full functional level about a year after their last chemotherapy. For some it may take much longer than that or may never fully happen.
When someone commits suicide it is always devastating, even if we did not personally know that person. we never know the full circumstances of what made that person decide that the life he fought for and cherished was not worth living any more, but I think that it always contains a message to the society that we should try to understand and not ignore.
I had many times in the last few years in which I considered suicide. I even had a plan and knew exactly how I was going to do it. Yet, I never crossed that line, not only because I was physically unable to do it.
I can fairly easily understand what makes people consider suicide, but I can't understand what makes them actually do it. It seems like it is a very easy line to cross, but it is not. And when someone decides to cross that line, there should be very strong reasons for him to do so. Reasons that we as a society should understand so that hopefully such circumstances will never happen again.
RivkaRivka
Senior Member
- Messages
- 368
== Feel free to forward ==
April 26, 2012
Dear members of the ME/CFS and Lyme communities,
WHAT: Invitation to Patrick Kelly's Memorial (and Healing) Service, via a telephone conference call.
WHEN: Sunday, May 6, 2012, at 3 pm EST (which is 12 noon PST; 8 pm London time; 7 pm Greenwich Mean Time).
WHO: Anyone in the ME/CFS/Lyme community moved to join us. We'll also welcome Patrick's father and close friends from both on and off the forums.
HOW: Conference Call dial-in to this USA phone number: 1-218-862-1300. Then you must punch in the Conference Code: 840957
RSVP: None required.
COST: No charge to call this phone number, except whatever your own phone service will charge you.
QUESTIONS?: Contact Rivka (at) ThatTakesOvaries (dot) org
DETAILS: Last week we lost a wonderful man, Patrick Kelly (aka "hubcap_halo"), to this horrific illness that so many of us struggle with. Patrick was an amazingly supportive and upbeat man who was constantly striving to move in a positive direction towards health and wellness, along with the rest of us.
We understand how hard Patrick's life must have been, living a decade and a half with ME/CFS/Lyme -- so hard that he finally decided he was better off not struggling any longer. This was a shocking and deep blow to all of us, even if we did not know Patrick personally. As individuals and as a community, it will take us time to grieve and heal.
Please feel free to join us as we begin to do just that at this Memorial (and Healing) Service for Patrick Kelly, where we will fondly remember our much loved community member.
Since you did not need to have known Patrick personally to feel the impact of his loss, you also do not need to have known him personally to now feel welcome to come to his Memorial Service.
During the call, those who wish can share a few minutes of fond memories of Patrick, or perhaps appropriate quotes from Patrick's health forum posts over the years. There is no need to sign up in advance, just come ready to share if you want to.
NOTE: Unfortunately, our gathering will not be able to offer personal counseling services to those who are in need. But we sure understand the need! So we urge you to not give up hope and please seek help. For those feeling like the pain and suffering is unbearable, this is a good place to start: http://www.metanoia.org/suicide/
April 26, 2012
Dear members of the ME/CFS and Lyme communities,
WHAT: Invitation to Patrick Kelly's Memorial (and Healing) Service, via a telephone conference call.
WHEN: Sunday, May 6, 2012, at 3 pm EST (which is 12 noon PST; 8 pm London time; 7 pm Greenwich Mean Time).
WHO: Anyone in the ME/CFS/Lyme community moved to join us. We'll also welcome Patrick's father and close friends from both on and off the forums.
HOW: Conference Call dial-in to this USA phone number: 1-218-862-1300. Then you must punch in the Conference Code: 840957
RSVP: None required.
COST: No charge to call this phone number, except whatever your own phone service will charge you.
QUESTIONS?: Contact Rivka (at) ThatTakesOvaries (dot) org
DETAILS: Last week we lost a wonderful man, Patrick Kelly (aka "hubcap_halo"), to this horrific illness that so many of us struggle with. Patrick was an amazingly supportive and upbeat man who was constantly striving to move in a positive direction towards health and wellness, along with the rest of us.
We understand how hard Patrick's life must have been, living a decade and a half with ME/CFS/Lyme -- so hard that he finally decided he was better off not struggling any longer. This was a shocking and deep blow to all of us, even if we did not know Patrick personally. As individuals and as a community, it will take us time to grieve and heal.
Please feel free to join us as we begin to do just that at this Memorial (and Healing) Service for Patrick Kelly, where we will fondly remember our much loved community member.
Since you did not need to have known Patrick personally to feel the impact of his loss, you also do not need to have known him personally to now feel welcome to come to his Memorial Service.
During the call, those who wish can share a few minutes of fond memories of Patrick, or perhaps appropriate quotes from Patrick's health forum posts over the years. There is no need to sign up in advance, just come ready to share if you want to.
NOTE: Unfortunately, our gathering will not be able to offer personal counseling services to those who are in need. But we sure understand the need! So we urge you to not give up hope and please seek help. For those feeling like the pain and suffering is unbearable, this is a good place to start: http://www.metanoia.org/suicide/
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
Don wrote:
Modern society is not tolerant of *anyone* who is not working to further enrich the wealthy. Thus the endless attacks on pensioners, unemployed or sick people, and stay-at-home mothers. We are all considered to be lazy parasites.
No one ever mentions all the parasites making a living off my illness, while I continue to live in extreme poverty and receive expensive but ineffective medical 'care'.
Modern society is not tolerant of *anyone* who is not working to further enrich the wealthy. Thus the endless attacks on pensioners, unemployed or sick people, and stay-at-home mothers. We are all considered to be lazy parasites.
No one ever mentions all the parasites making a living off my illness, while I continue to live in extreme poverty and receive expensive but ineffective medical 'care'.
confetti11
Senior Member
- Messages
- 279
I write this feeling very overwhelmed. I haven't been online a lot in the past 2 weeks and I just heard this news today. I've known Patrick since 2007. How much we spoke varied but have always kept in touch. I just spoke with him the last time earlier this year. I'm not completely surprised by this news but devastated he's gone, nonetheless. I don't, however, fault him for making this decision as I know how he suffered (as many reading this have also suffered) and it was too much. It's often way too much for any of us and, I feel, he chose to do something about it.
I'm too overcome to read through everyone's posts but I'm guessing he's being described as encouraging, optimistic, open-minded, philosophical and very intelligent. He always had a kind word and was happy for you if you saw improvement in your health...even when he felt awful. I will especially miss him encouraging me through backslides...reminding me that I've felt better and I can get there again. He was always trying new things to get better. He was brave and encouraged me to be too.
I don't know if he left a note or if the public will ever know his private thoughts. But...I can say that I believe this was not a decision made hastily for him. It was not made during a temporary down period. He suffered a lot for a long, long time. Again, as many have. He witnessed endless losses. I believe he had just had enough. I'll miss him a lot. I have to believe he's in a better place and perhaps has a smile on his face that isn't experiencing any pain behind it, finally. I will look to him in strength during my impossible times...he understood like few do.
Patrick was strong and patient. I believe he had just had enough. And I honor his memory. I almost never drink but I think I'll dig out a bottle of wine and toast to him tonight. What a loss of a good spirit.
I'm too overcome to read through everyone's posts but I'm guessing he's being described as encouraging, optimistic, open-minded, philosophical and very intelligent. He always had a kind word and was happy for you if you saw improvement in your health...even when he felt awful. I will especially miss him encouraging me through backslides...reminding me that I've felt better and I can get there again. He was always trying new things to get better. He was brave and encouraged me to be too.
I don't know if he left a note or if the public will ever know his private thoughts. But...I can say that I believe this was not a decision made hastily for him. It was not made during a temporary down period. He suffered a lot for a long, long time. Again, as many have. He witnessed endless losses. I believe he had just had enough. I'll miss him a lot. I have to believe he's in a better place and perhaps has a smile on his face that isn't experiencing any pain behind it, finally. I will look to him in strength during my impossible times...he understood like few do.
Patrick was strong and patient. I believe he had just had enough. And I honor his memory. I almost never drink but I think I'll dig out a bottle of wine and toast to him tonight. What a loss of a good spirit.
Its hard to put into words what I am feeling. I actually have tried to word it different ways as not to sound harsh but I actually feel relieved for this man. I did not know him but his Prohealth post certainly summed up how many of us feel. Some of the people that try the hardest to be upbeat and positive are suffering the most inside.
I feel sad for the life he lost all those years ago, long before he finally ended his own life!!!
I feel sad for the life he lost all those years ago, long before he finally ended his own life!!!
- Messages
- 1
- Location
- San Diego, CA
Cort, thank you for writing this--I was so moved by this beautiful tribute. I'm new to this site and didn't know Patrick at all, but after reading your article and all the poignant comments from others, I feel a bit as if I did.
Years ago I wrote an article about CFS/FM and suicide, which is currently available on Bruce Campbell's site (http://cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide). If you think it would be helpful, you're welcome to re-post it on your site.
Lisa
http://livingwithcfs.com
Years ago I wrote an article about CFS/FM and suicide, which is currently available on Bruce Campbell's site (http://cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide). If you think it would be helpful, you're welcome to re-post it on your site.
Lisa
http://livingwithcfs.com
Sing
Senior Member
- Messages
- 1,784
- Location
- New England
I am finally reading this today, too late for the memorial call with Patrick's family. I am grateful for the outpouring of feeling and memories here, the value that we saw in his life despite being ill. I feel we are honoring ourselves and each other widely in what has been said about Patrick. He seemed so much about giving, and this too, he is giving to us if we will receive it, the sense of ourselves as this valuable in our lives, even when we have major limitations. Let's please take it in to ourselves, even while we give thanks for Patrick's life as a human being quite like us.
Group hug,
Sing
Group hug,
Sing