tag:blogger.com,1999:blog-3881579789503566925.post4447182973794014625..comments2023-10-09T05:51:49.873-04:00Comments on Forced to Sit Still and Shut Up -- A Journey Through ALS, Disability and Mindful Living: Random Thoughts Feb 14, 2009Fern Ellen Cohenhttp://www.blogger.com/profile/15615775005603320729noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-3881579789503566925.post-9136755311054334082009-03-08T23:14:00.000-04:002009-03-08T23:14:00.000-04:00I admire your candor and willingness to share this...I admire your candor and willingness to share this experience with others. Terminal illness is something we will all have to face at some point provided we don't do something stupid or have something stupid happen to us. My only advice would be keep up the good fight (knowing it's futile physically) and remember to consider how your actions and words will affect others once you are gone.<BR/><BR/>Peace, if nothing else, has to be on the "other side" but keep doing what you can while you're here. It is appreciated.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-87075654324891101482009-02-27T12:19:00.000-05:002009-02-27T12:19:00.000-05:00I enjoy reading your blog because of your honesty....I enjoy reading your blog because of your honesty. You have made me question how I relate to people with illnesses (including people who are terminally ill). You are still teaching others (including me) with your words. You have a gift. I wish you peace...Clarissa In CaliforniaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-49068478337419124532009-02-23T18:17:00.000-05:002009-02-23T18:17:00.000-05:00Fern, Thank you for your candor. I wish I had an...Fern, Thank you for your candor. I wish I had answers to some of the questions you pose. I ask them too. Hang in there and complain all you need to! Blessings, Claudia www.claudiasfamily.com http://www.claudias-family.blogspot.com<BR/>claudiamedic@live.comClaudiahttps://www.blogger.com/profile/05294268619531127049noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-39649260058530669572009-02-20T20:27:00.000-05:002009-02-20T20:27:00.000-05:00Fern,Thank you so much for your blog. My dearest ...Fern,<BR/><BR/>Thank you so much for your blog. My dearest sister has had ALS for over 10+ years now. She became ill aroung her 21st birthday. She has a very progressive form of ALS and within 1 year lost almost everything. We were able to commnicate with her for almost a year after that until she lost the ability to move her eyes. Its been almost 8 years since we could last communicate with her. <BR/><BR/>I wish she much that I could communciate with her. I wish I know how she felt, what she thinks, what she needs.. if she wants to continue her fight.. all questions I wish I could ask and she could answer. <BR/><BR/>Fern, your blog is a gift to me.. because it gives me a window into her heart and what she might be thinking and feeling.<BR/><BR/>Please share.. please write.. please tell us your thoughts, feelings, pains, joys.. anything you want to write.<BR/><BR/>I am here.. we are here.. and I am listening.<BR/><BR/>God Bless you and I will keep you in my daily prayers. <BR/><BR/>With deepest affection,<BR/><BR/>April Thomas<BR/>Cape Cod, MA<BR/>aprilsparkles@yahoo.comAprilhttps://www.blogger.com/profile/03370452286360069444noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-34967921595300555572009-02-17T22:48:00.000-05:002009-02-17T22:48:00.000-05:00Hi guys,thank you for your support!Mary, why don't...Hi guys,<BR/>thank you for your support!<BR/>Mary, why don't u send me an email at fec139@gmail.com so I can answer your questions and we can converse, if you'd like! I would love to!<BR/>FernFern Ellen Cohenhttps://www.blogger.com/profile/15615775005603320729noreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-25774611137510991872009-02-17T22:42:00.000-05:002009-02-17T22:42:00.000-05:00Hi Fern,I was just dropping by to support your blo...Hi Fern,<BR/><BR/>I was just dropping by to support your blog, but am so inspired and impressed with your blog, and your candidness. I am not sure if you know the back story of Ijustfinished.com, but in my prior life I was a pediatric nurse for special needs kiddos. I frequently cared for patients with a disease in the same spectrum of diseases as ALS, called Werding-Hoffman. I just wanted you to know that I am empathetic, and compassionate to your struggle. Please, don't ever apologize for writing your thoughts and feelings into your blog. Please, keep up the fight, and the truthful, transparent, real blog!<BR/><BR/>Renee<BR/>Ijustfinished.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-88436393046237093902009-02-17T17:01:00.000-05:002009-02-17T17:01:00.000-05:00Dear Fern,Thank you for sharing your journey with ...Dear Fern,<BR/><BR/>Thank you for sharing your journey with us. I am one of your many new friends who want to know how you are, what you're thinking and feeling, what you're doing. I feel like I'm coming in in the middle and wonder if you would mind catching us up on your earlier life and where you are right now. Where and what did you teach for how long -- up until you were diagnosed with ALS? How long have you been on Twitter and blogging? How do you write? Do you have full use of your hands and fingers? Can you get out of the wheelchair at all and walk a little? Please tell us what you can no longer do and what you can do. <BR/><BR/>I don't understand why anyone would feel angry toward you. Please continue to write your own narrative, speaking honestly about the bad times and good times. Where you find humor, share that. When you are miserable or frightened, share that, too. <BR/><BR/>Thank you very much for letting us share your journey. You are enlightening people about ALS. Let us hope that science finds a cure and, until then, treatment.<BR/><BR/>Big hug,<BR/><BR/>MaryAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-81561667655942304192009-02-17T04:38:00.000-05:002009-02-17T04:38:00.000-05:00I have a genetic illness that will eventually kill...I have a genetic illness that will eventually kill me, barring some miraculous medical breakthrough. I am not currently bed ridden, but I have been at death's door a number of times.<BR/><BR/>I always struggled with how to tell people I can't hang out because I don't have the strength to move. It would be very difficult living that way every day. Three months at a time is more than enough for me.<BR/><BR/>What do you say to people who want to be more involved in your life but have unrealistic expectations about you?<BR/><BR/>What do you say to somebody who is terminally ill, aside from "I love you"?<BR/><BR/>Different people react in different ways to illness. I tried to maintain a blog that just chronicled my suffering - like a medical journal, but I couldn't keep it up. It was too depressing. I don't like to dwell on being sick.<BR/><BR/>It takes more bravery than I have to do what you're doing here.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3881579789503566925.post-90162853180468194652009-02-14T12:39:00.000-05:002009-02-14T12:39:00.000-05:00Wow, what a fantastic post. You are so good at wr...Wow, what a fantastic post. You are so good at writing from the heart.<BR/><BR/>Thanks<BR/>ChuckChuck1106https://www.blogger.com/profile/04964379787755713857noreply@blogger.com