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Saturday, February 14, 2009

Random Thoughts Feb 14, 2009

ferncohen.com

As each stage of this disease comes about, I find myself adjusting to a "new normal". For reasons of hygiene, I have to be woken up by the night aide at 6:00am, to do some personal care. This means less time sleeping in my bed on the bi-pap vent. So, I need to nap later in the morning with the bi-pap on. Actually my doctor wants me to use the bi-pap more during the day. I have been resistant, because I know that needing the bi-pap more than sleeptime means the disease is progressing. But the reality is that the circles and puffiness around my eyes are due to insufficient oxygen.

And I have been perfect in monitoring my medication, except for yesterday. I didn't realize I had run out of Baclofen, and could not take it last night or this morning. I am reading that the withdrawal can be wicked and even dangerous, so I am biting the bullet until the pharmacy opens in about 90 minutes. In the meantime, I tossed and turned last night and felt feverish; that is from the withdrawal.

I am accustomed to giving the aides the television remote, but yesterday I had a rare opportunity to watch an IFC movie. It was a Japanese movie called "Nobody Knows" about a mom who abandons her children to fend for themselves. If there was ever a movie to kick up abandonment issues, this was it. I was bawling! And then at night I watched the special Diane Sawyer edition of "20/20" about Appalachia. More bawling. I am realizing that I am hurting and sad, and these two shows served as catharsis for me.

I had to put this blog on a site where I could monitor comments. I discovered way too late an embarrassing comment on my other site by someone who needed to get out some frustration I can't show all happiness and positivity all the time. I have to deal with most things by email or using relay calling. Just addressing an envelope can take a lot out of me. It's the little things that frustrate me sometimes. I always believed in presenting the hardships as well as the joys and blessings. If it gets too hard to read, you don't have to read it. I have no choice but to live it.

On Monday, I realized I had no dial tone on my phone. Verizon kept putting me through all kinds of troubleshooting hoops. When they suggested I do some kind of test on my jack, I knew this was beyond all realistic expectations. I also knew I had nobody coming to visit in the near future who could do this. So I sent off an email and I very politely told them that I am disabled and wheelchair-bound, so getting down on the floor was not an option. On Thursday, a repairman came out to repair it. On my weekly foray into the bathroom [the only time I go in there], I must have severed the cord with the wheelchair. The Verizon engineer needed to rewire and put the cord up higher. But I was more than three days without a house phone.

I appreciate when people are sensitive to my feelings, but wish everybody didn't walk on eggshells around me. Some of the people I used to be closest to, I don't know anymore. Some people tell me nothing about what is going on in their lives. Are they afraid if they tell me the good stuff I will be jealous? Are they afraid the bad stuff will upset me, or that I won't be empathetic? I have had a few people recently tell me why they are angry with me. Truth sometimes hurts, but in the end it helped me to understand that other people probably feel that way and won't tell me. It's like the 800 pound gorilla in the room. I've made mistakes along the way, but some of the very people who cheered me on later told me off. I was too truthful and too transparent. I hung onto every promise, every word people said. I wish some day that people will know what to say and what to do around people who have chronic [terminal] illness.

9 comments:

Chuck1106 said...

Wow, what a fantastic post. You are so good at writing from the heart.

Thanks
Chuck

Anonymous said...

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.

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.

What do you say to people who want to be more involved in your life but have unrealistic expectations about you?

What do you say to somebody who is terminally ill, aside from "I love you"?

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.

It takes more bravery than I have to do what you're doing here.

Mary Knudson said...

Dear Fern,

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.

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.

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.

Big hug,

Mary

Renee Giroux said...

Hi Fern,

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!

Renee
Ijustfinished.com

Fern Cohen said...

Hi guys,
thank you for your support!
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!
Fern

April said...

Fern,

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.

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.

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.

Please share.. please write.. please tell us your thoughts, feelings, pains, joys.. anything you want to write.

I am here.. we are here.. and I am listening.

God Bless you and I will keep you in my daily prayers.

With deepest affection,

April Thomas
Cape Cod, MA
aprilsparkles@yahoo.com

Claudia Burrows said...

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
claudiamedic@live.com

Anonymous said...

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 California

ClintonR said...

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.

Peace, if nothing else, has to be on the "other side" but keep doing what you can while you're here. It is appreciated.