WHAT FRIENDS SAY
I asked six friends what it's like to know someone this unwell.
These are there answers, copied and pasted:
These are there answers, copied and pasted:
"Hey Barry, here are my thoughts:
When I speak to my friend with ALS, I am in awe of his strength to cope everyday with this horrid illness and still remain hopeful. Although I want to offer support and friendship, I have so many questions for him about how he can muster the strength to carry on, how he copes on a daily basis, and how he stays so positive everyday. I feel that it's disrespectful to fire questions at someone who is suffering, so I am careful not to ask too many questions at once. Since we all have to face death eventually, people with ALS can teach everyone a thing or two about facing a life threatening illness with dignity, hope and a positive outlook, rather than fear and dread."
When I speak to my friend with ALS, I am in awe of his strength to cope everyday with this horrid illness and still remain hopeful. Although I want to offer support and friendship, I have so many questions for him about how he can muster the strength to carry on, how he copes on a daily basis, and how he stays so positive everyday. I feel that it's disrespectful to fire questions at someone who is suffering, so I am careful not to ask too many questions at once. Since we all have to face death eventually, people with ALS can teach everyone a thing or two about facing a life threatening illness with dignity, hope and a positive outlook, rather than fear and dread."
Los Angeles ftom Mulholland Drive
"What is it like having a friend with ALS? You hear and see about how it affects other people but until it's taken hold of someone you care about, you don't truly understand how devastating it is. You begin to consider your own morality, and everyone around you and begin to realize how random life is. It's awful watching a friend slowly deteriorate and go through so much in their own. There is only so much you can do, and it never feels like it's enough. I feel helpless that I can't do more, and then later reflect on how selfish it is for me to even feel that way. If I feel helpless, I can't even begin to fathom how he feels with having his independence and health slowly being chipped away. That being said, it's time and energy wasted thinking about that. Invest that time and energy just enjoying their company. It's an awful disease that affects far too many people."
California Pacific Coast
"Barry. Here are my thoughts on ALS. I know that ALS is a devastating disease. Not first hand of course but having read up on it before I can understand the nightmare it must be for someone who lives with it. Having one of my best friends with this disease is quite a different matter. To see someone I have known and shared so many great times with live with ALS is devastating to me. I can only imagine the physical and psychological pain you must be going through. I feel quite helpless. I do not know what to say at times. I feel all I can do is listen and try to bring at least a little bit of comfort to your situation. I pray that God may bring Comfort to you and that a cure be found. It seems like a very bad dream at times, as I know it must be a nightmare to you. I can only pray that some help be on the way to you and the many people living ALS. Hope this helps. When I talk to Barry it causes me to think of how powerless I can be in this situation. You want to be able to do more than just listen. To be able to be able to make it all go away or at the very least to be able to be there all the time. But He jystwants an a friend to listen to and to have some comfort and safety. I hope that I provide that. Barry you are so brave and courageous and strong. I Know this is very very difficult to say the least. I can only imagine the pain of this disease. And I don't mean just physically. Keep on fighting my friend."
California Pacific Coast
When you learn of a dear friend being diagnosed with ALS, the first thoughts that come to your head are: No!... maybe they made a mistake?…
Denial, shock, anger… and feelings of sadness. Why him?- someone so caring, truly genuine and just simply, a wonderful person. How is it fair?
Listening to his struggles through the grieving process is heartbreaking. I feel like I have no control over any of this. I feel helpless as the disease slowly takes away so many aspects of my friend’s life.
It’s always tricky knowing what to say or what to talk about. I try not to always focus on the illness and all of the struggles it is causing my friend, but still want him to be able to vent. I want to listen as he processes out loud. I want to be able to say something that will help, but I know that there’s nothing that will help take this away.
On the other side, I worry about talking about things other than the illness, as I don’t want to minimize what he is going through. The hope of focusing on something other than ALS is to distract him for a short time; getting lost in another thought instead of being tormented by constant thoughts of the illness. But at times I catch myself feeling guilty sharing the good things in my life, or feeling bad for talking about the work or home life struggles as well, because they are so trivial in comparison. I fear that I’m in some way disregarding (in that moment) the significant struggle my friend is going through.
Having said all of this, something positive that has come out of this situation is that I’ve been able to see the emotional strength my friend has as he perseveres through each loss, which is incredible. Further to this, having been allowed the opportunity to experience this journey with my friend, it has allowed me to keep everything in perspective, to be more mindful and in the moment, and to always find the smallest positives in each situation."
Denial, shock, anger… and feelings of sadness. Why him?- someone so caring, truly genuine and just simply, a wonderful person. How is it fair?
Listening to his struggles through the grieving process is heartbreaking. I feel like I have no control over any of this. I feel helpless as the disease slowly takes away so many aspects of my friend’s life.
It’s always tricky knowing what to say or what to talk about. I try not to always focus on the illness and all of the struggles it is causing my friend, but still want him to be able to vent. I want to listen as he processes out loud. I want to be able to say something that will help, but I know that there’s nothing that will help take this away.
On the other side, I worry about talking about things other than the illness, as I don’t want to minimize what he is going through. The hope of focusing on something other than ALS is to distract him for a short time; getting lost in another thought instead of being tormented by constant thoughts of the illness. But at times I catch myself feeling guilty sharing the good things in my life, or feeling bad for talking about the work or home life struggles as well, because they are so trivial in comparison. I fear that I’m in some way disregarding (in that moment) the significant struggle my friend is going through.
Having said all of this, something positive that has come out of this situation is that I’ve been able to see the emotional strength my friend has as he perseveres through each loss, which is incredible. Further to this, having been allowed the opportunity to experience this journey with my friend, it has allowed me to keep everything in perspective, to be more mindful and in the moment, and to always find the smallest positives in each situation."
"Barry, in response to your question to your friends: what is it like talking to someone that is unwell?
ALS is a scary illness that is slowly debilitating your body, I have watched your body weaken. Our friendship, however has done the opposite. It has blossomed to a point that when I think of family.... I think of you. Our talks have gone deep and dark which has strengthened our bond. We always warn each other before we talk about the reality of this disease, and smiles and laughter usually prevail. Why? Why is it that we can still muster up enough strength to smile and laugh when talking about the darkside? ALS has taken many things from you Barry, but it hasn't taken who you are. You will always be a great listener , you will always respect others in an assertive manner. You will always consider others before yourself , and you will always make me laugh. ALS can't take that from you. I love the moments when I don't see your disease, and I have grown to accept the moments when your illness is thriving. I love that were there for each other through our journey together. One of the things I am most grateful for is that you are here. I lost a close friend years ago and it was sudden and I didn't get to say goodbye. God has given me an opportunity to cherish the moments we still have together and to say good bye when that time comes.
My partner thinks your the bravest man she has ever met.... and I agree. For you to share your story for the world to see on this beautiful website shows how strong you really are. I'm Proud of you."
ALS is a scary illness that is slowly debilitating your body, I have watched your body weaken. Our friendship, however has done the opposite. It has blossomed to a point that when I think of family.... I think of you. Our talks have gone deep and dark which has strengthened our bond. We always warn each other before we talk about the reality of this disease, and smiles and laughter usually prevail. Why? Why is it that we can still muster up enough strength to smile and laugh when talking about the darkside? ALS has taken many things from you Barry, but it hasn't taken who you are. You will always be a great listener , you will always respect others in an assertive manner. You will always consider others before yourself , and you will always make me laugh. ALS can't take that from you. I love the moments when I don't see your disease, and I have grown to accept the moments when your illness is thriving. I love that were there for each other through our journey together. One of the things I am most grateful for is that you are here. I lost a close friend years ago and it was sudden and I didn't get to say goodbye. God has given me an opportunity to cherish the moments we still have together and to say good bye when that time comes.
My partner thinks your the bravest man she has ever met.... and I agree. For you to share your story for the world to see on this beautiful website shows how strong you really are. I'm Proud of you."
