Hal, so happy about this amazing news. My dad was on hospice 8 yrs and he started in his 80s-it is on no way a death sentence. Glad you’ll be getting more care …and for free! A blessing. You’ll teach them about ME/CFS and then recommend their services to others w/the same disease. I am, as always, rooting for you. (I was/am an artist in the literary section of the OAC and have fond memories of your performances and kindness). 😘
What a gift you are to so many of us! Your thoughtful and candid commentary on life with physical illness and the limitations it brings, the honing of our sense of true self when much of what ‘normal life’ used to define us is stripped away.
Your nature photos first drew me in with their beauty and unerring composition. Then your stories and perspective on the unasked-for life of ME/CFS spoke to my struggling spirit in disability.
Gosh Hal, Annette is one heck of a lifeguard! And I love this completely. My guess is that she is your guide to learn that the hat was never the point.
Spiritually aware people.. and less trying to “fix” you.
You don’t need fixing, (despite how amazing it would be to have the solution to chronic fatigue). I’m going to guess here that hospice will bring you less stress, less worry, less expense and some much needed comfort company.
At least that is what I am hoping for you.
I’m glad I stumbled across your stack Hal. I walk with my own bunch of acronym labeled crud that has flattened my world. It’s healing to have a bit of company for the walk.
Hi, Hal. I was a hospice nurse for four years. Your hospice team (nurses, aides, social workers and chaplains) will certainly learn about your illness (from you) but that is not what they are there fire. They are there for your comfort. They are there to keep you out of the hospital. I can tell you the these people are spiritually evolved. You can't work for long in hospice or even WANT to work in hospice without being already spiritually evolved. You will find that your social worker(s) know EVERYONE (people and agencies/organizations). They are goldmines of help and knowledge. Your chaplain will follow your lead with anything you want -- or don't want-- to talk about. Your aides will bring you the physical comfort of cleanliness. And your nurse will oversee it all in addition to providing the many comfort meds (narcotic and non-narcotic). Don't be afraid to tell her/him anything. YOU are the center and purpose of our work. Love to you, and joy at this truly good news!
Hal, this made my heart smile today. As one who works companioning people in transition as well as loss and grief I’ve done so much work with Hospice. It can be so much more than just the end days. Hospice is more about living fully while still living, and less about focus on the dying part alone. My Mom has dementia, and just yesterday I set up a talk with her care team about transitioning to Hospice. Dementia is a terminal diagnosis and too often people with dementia don’t ”qualify” for hospice support in the time when it can make a big difference. They are seen as not ill enough, but in maintaining quality of LIVING as the disease progresses they often more than qualify. I’m so happy you are now connected with folks with the Hospice Heart. A creative use of the service is good to see, and I know they will be absorbing your experience with ME/CFE. We are a sharing community and I know that what you teach us will be shared and used to support others living life as you do. Thank you, and blessings aplenty to you.
Dear Hal, I’m so happy for you 😊! You’re doing really something beautiful and important narrating about your disease and always remembering how important is to slow down and taking some time to do things that are so important but neglected by the grand part of people; things like listen to our neighbor with attention and compassion, contemplating nature, meditate in a delicate way, expand our creativity involving ourselves with art and so on.
I’ll thank you so much for what you are doing despite your difficult conditions and I hug you with all my heart! My affectionate greetings to you, dearest Hal.
I came for the swears and stayed for the beauty. Cor your friend Emma sounds wise. I'll have to meet her sometime 😂. Beautiful as always Hal. Trust the path 🌟🙌 even the I'm fucked-ness if it.
Well Hal, very interesting article. Of course I now know hospice fell through and that is total BS.
I wish I could come to your house in person. Zoom will have to do. I like hearing your anger over this being expressed, you need to be angry. Some day this will all be over but until that day this is your reality and it sucks. I am thankful you have so many caring friends and supporting family. And thankful to be on the friend side of that. Yes I know not to start a sentence with a conjunction but I'm not turning this in for a grade. I pray for you often, not every day sometimes but most days. Like any mortal human I don't know why God hasn't given you a break but this I do know. He loves you and will always be with you. Your body seems to be wasting away pretty quickly but spiritually you've grown greatly. I love love love you Hal.
Thank you Hal. Yes... quiet time is the work. I've been struggling to surrender into it lately and your invitation is a potent reminder. I'm happy to hear you are receiving more of the care you need. I love what you said about the reality of mountains and all the rest - I felt this strongly while I listened to you.
Ahhhh, the word often puts people off. But really it’s a great care shift that I hope paves your way to a bit of happiness and… if it means more swearing, I’m thinking that makes it do-able. Good on you.
Thank you for the invitation to visit with you in the “no commotion zone”. 🤍
I wish I could. If only my magic dust were available to transport me to your door.. I just haven’t figured out the formula to make it yet. Please know my Spirit connects with your Spirit EVERY time I hear your voice.
Keep the faith Dear Hal and keep shining your light! 🍂🤎🍂
Hal, so happy about this amazing news. My dad was on hospice 8 yrs and he started in his 80s-it is on no way a death sentence. Glad you’ll be getting more care …and for free! A blessing. You’ll teach them about ME/CFS and then recommend their services to others w/the same disease. I am, as always, rooting for you. (I was/am an artist in the literary section of the OAC and have fond memories of your performances and kindness). 😘
I very fondly remember you at those wonderful Columbus gatherings, Amy. Thank you for your kind words. H
Holy sh*t, you brought me to tears. Thank you. Love you. Back to more quiet times.
♥️
What a gift you are to so many of us! Your thoughtful and candid commentary on life with physical illness and the limitations it brings, the honing of our sense of true self when much of what ‘normal life’ used to define us is stripped away.
Your nature photos first drew me in with their beauty and unerring composition. Then your stories and perspective on the unasked-for life of ME/CFS spoke to my struggling spirit in disability.
Thank you.
Thank you so much. H
I love this episode, especially the swearing, but even more the triumph of having people to help make you comfortable.
Gosh Hal, Annette is one heck of a lifeguard! And I love this completely. My guess is that she is your guide to learn that the hat was never the point.
Spiritually aware people.. and less trying to “fix” you.
You don’t need fixing, (despite how amazing it would be to have the solution to chronic fatigue). I’m going to guess here that hospice will bring you less stress, less worry, less expense and some much needed comfort company.
At least that is what I am hoping for you.
I’m glad I stumbled across your stack Hal. I walk with my own bunch of acronym labeled crud that has flattened my world. It’s healing to have a bit of company for the walk.
Hi, Hal. I was a hospice nurse for four years. Your hospice team (nurses, aides, social workers and chaplains) will certainly learn about your illness (from you) but that is not what they are there fire. They are there for your comfort. They are there to keep you out of the hospital. I can tell you the these people are spiritually evolved. You can't work for long in hospice or even WANT to work in hospice without being already spiritually evolved. You will find that your social worker(s) know EVERYONE (people and agencies/organizations). They are goldmines of help and knowledge. Your chaplain will follow your lead with anything you want -- or don't want-- to talk about. Your aides will bring you the physical comfort of cleanliness. And your nurse will oversee it all in addition to providing the many comfort meds (narcotic and non-narcotic). Don't be afraid to tell her/him anything. YOU are the center and purpose of our work. Love to you, and joy at this truly good news!
This is a beautiful development, Hal. I’ll be back to sit in silence with you when I return to Ohio after the 14th. 💗🌀
I'm cheering for you right back! So glad you've got this help and these amazing people to help you.
Hal, this made my heart smile today. As one who works companioning people in transition as well as loss and grief I’ve done so much work with Hospice. It can be so much more than just the end days. Hospice is more about living fully while still living, and less about focus on the dying part alone. My Mom has dementia, and just yesterday I set up a talk with her care team about transitioning to Hospice. Dementia is a terminal diagnosis and too often people with dementia don’t ”qualify” for hospice support in the time when it can make a big difference. They are seen as not ill enough, but in maintaining quality of LIVING as the disease progresses they often more than qualify. I’m so happy you are now connected with folks with the Hospice Heart. A creative use of the service is good to see, and I know they will be absorbing your experience with ME/CFE. We are a sharing community and I know that what you teach us will be shared and used to support others living life as you do. Thank you, and blessings aplenty to you.
Dear Hal, I’m so happy for you 😊! You’re doing really something beautiful and important narrating about your disease and always remembering how important is to slow down and taking some time to do things that are so important but neglected by the grand part of people; things like listen to our neighbor with attention and compassion, contemplating nature, meditate in a delicate way, expand our creativity involving ourselves with art and so on.
I’ll thank you so much for what you are doing despite your difficult conditions and I hug you with all my heart! My affectionate greetings to you, dearest Hal.
Luca 🤗 🌲🐿️🌸❤️
I came for the swears and stayed for the beauty. Cor your friend Emma sounds wise. I'll have to meet her sometime 😂. Beautiful as always Hal. Trust the path 🌟🙌 even the I'm fucked-ness if it.
Well Hal, very interesting article. Of course I now know hospice fell through and that is total BS.
I wish I could come to your house in person. Zoom will have to do. I like hearing your anger over this being expressed, you need to be angry. Some day this will all be over but until that day this is your reality and it sucks. I am thankful you have so many caring friends and supporting family. And thankful to be on the friend side of that. Yes I know not to start a sentence with a conjunction but I'm not turning this in for a grade. I pray for you often, not every day sometimes but most days. Like any mortal human I don't know why God hasn't given you a break but this I do know. He loves you and will always be with you. Your body seems to be wasting away pretty quickly but spiritually you've grown greatly. I love love love you Hal.
Thank you Hal. Yes... quiet time is the work. I've been struggling to surrender into it lately and your invitation is a potent reminder. I'm happy to hear you are receiving more of the care you need. I love what you said about the reality of mountains and all the rest - I felt this strongly while I listened to you.
Ahhhh, the word often puts people off. But really it’s a great care shift that I hope paves your way to a bit of happiness and… if it means more swearing, I’m thinking that makes it do-able. Good on you.
I love you Hal! Thank you!
Thank you for the invitation to visit with you in the “no commotion zone”. 🤍
I wish I could. If only my magic dust were available to transport me to your door.. I just haven’t figured out the formula to make it yet. Please know my Spirit connects with your Spirit EVERY time I hear your voice.
Keep the faith Dear Hal and keep shining your light! 🍂🤎🍂
Good news, almost gospel. Good people. Love your way of telling your story and bringing hope. Some hope. Love you hal.