Webcast tonight - finding the humor in MS

[Lulu54]

You can log in at any time - 8-10 - for this webcast. I'm curious to hear how Amy will present humor when this is often a humorless situation.  

http://www.blogtalkradio.com/mslolradio/2011/10/20/humor-me-finding-the-funny-while-living-with-ms

[twopack]

I am sorry Shermay that you have lost so much function.  It must be very hard to grieve the loss of a parent and your own independence at the same time.  Frustration and anger are very natural - even necessary - responses to both situations.

NOBODY is suggesting you would, could or should laugh those things away.  Although humor does help some people get through the really tough times it certainly isn’t for everyone.  You know yourself so you know it doesn't help you.  That's fine.  Maybe you can share what does help you when you feel comfortable enough.  


It’s wrong to deny people the sense of loss they rightfully experience when a life or lifestyle ends.  Anger, depression and sadness have functions in the grieving process.  They need to be experienced.  The time and space and style any a person needs to process their grief will vary greatly.  However, we can all expect to move back into some level of happiness (or minimally, a non-angry satisfaction) that makes life bearable again.  When there is NO sign that will be coming our way it is time to speak to a trusted physician.

Some people actually appreciate moments of normalcy or comic relief to break up their grief.  Those who don’t are probably best off avoiding people and places who can't appreciate their special needs of the moment.   I believe each of us must take some of the responsibility to place ourselves in the environments best suited to assist our grieving and healing.

I have MS.  My losses to date haven't been as great as others when measured on the disability scale.  They are permanent.  I will likely experience more.  I haven’t fully accepted my present limitations.  I cry sometimes but also look for joy where I can.  I expect I will always have moments of wishing and missing.  I just don't want anger and frustration to become an additional limitation in my life.  I’ve been fortunate to know several people who taught by their living example that this is possible.  They all liked to laugh.

Mary

[shermay]

Finding the humour with living with MS?  I must be missing the point here, as I can't find anything that makes me laugh.  I feel that I am letting my familly down, not being able to walk, or to collect my Son from school - frankly I feel worthless.

Where's the humour when you can't drive, play with your children, and being in bed nearly all day?  Where's the humour when you fall into the fire and your Son has to get you out (last night).

Where's the humor when you have so self cath 6 times a day?  Your Husband has to drive you to all your appointments, and then your Son asks you 'can THIS Dr make you walk Mummy'.  

Been dx a long time now, and from being a VERY active person running my own business  that involved a lot of heavy lifting to a person that I am now - where's the humour in that.

In my thoughts, I would think that being dx with MS and still being able to work and drive 'could' be a different thing - just like I was up until my Father died, I was seriously ignoring MS, MS had no place in my life - I had the opinion 'MS????' just get on with it.

But NOW for us who are unable to do these 'normal' things there is no humour just frustation and anger.   Like summa said, ask a Cancer patient where their humour is.

I am envious of all people with MS who are able to go about their lives in a normal way, I wish I could  too - comedy about sufferings - I belive Summa said.

[supermum_ms]

hmmmm humorous sarcasm is often misunderstood, but its even harder to feel the intent in print, without the lift of tone, the merth in their eyes and tell tail smile after delivery. Sacasm is also a convenient excuse to say something that cuts and when the delivery gets a negative reaction, the deliverer passes it off as humor, that type of sacasm is not humor and everybody knows the difference because all the humor signs are missing.

I think we probably use humorous sacasm when dealing with the odd, unfair and down right weird things that happen to us, i dont think anyone would find someones suffering funny, thats not what its about. For me its about laughing at the little things, the embarrassing things and yes the weird things and i really dont see whats wrong with that but not everything can be laughed off. I really doubt anyone expects or is saying that, maybe its really about balance, finding the middle ground so you dont get overwhelmed by the truth of it, maybe even personality type has something to do with it too.

I dont really know if the why of it matters, we do still have choices and we can choose to make the best of what ever happens in life or be bitter and suspicious, i dont think MS or any other condition would change that or if it should even make a difference, we just are what we are and I say if laughing works for you, then go with it and enjoy the moments!

Cheers........JJ

[twopack]

Yes Sumanadevii, the page does state that "Amy works as a consultant and guest speaker...” The sentence continues on to say she does this "for health care workers". These are the people we rely on to help us. They are also the ones who generate the most complaints from the members of our forum. As you noted after your recent hospital stay, they obviously need some help understanding PwMS. Amy seems interested in educating them about MS and the people who live with it. I for one believe she may have an excellent tool to get them listening.

I don't know if Amy charges or how much. If I'm ever in a position to book her I'll find out. Speakers and consultants often do charge a fee to share their knowledge and experience. It's OK. People are allowed to make a living. In fact, as you point out yourself, this is one way your own family has been supported over the years.

Nobody is asking or requiring anyone here to pay a fee. Amy isn't even the one who introduced this thread about her 'product'. Lulu introduced it because she regularly posts info she thinks might be interesting to members. Basically, I don't understand whatever point you are trying to make Sumanadevii, other than the one about not liking MS directed humor.

I must admit, I do appreciate the attention this discussion has brought to one of Lulu's 'take-this-opportunity-to-educate-yourself-about-MS' threads. Her alerts usually direct us to opportunities we can bring right into our homes. Most anyone who wants to can join in without the difficulties of leaving the house, finding help to attend or paying any fee. Many are interactive and allow live questions. (I am sorry non-US residents if you are often the ones left out of these opportunities.) Anyway, I love to see Lulu's alerts appear. I hate to see them pass down the page with no comments to indicate there was a bit of interest. At least this one is getting lots of attention and sticking to the top for a while!

You are certainly correct Sumanadevii that we already know this isn't making you laugh. You've been quite clear about that. So I'm not sure why you keep coming back and repeating yourself. You are certainly allowed to voice your opinion. You have done so. We've heard you. Is there a reason you want to continue to block this experience for those who may have a different view?

I personally appreciate humor in general and applaud what Amy is doing. I haven't listened to her program yet or read her blog so I don't know if I will enjoy her particular style. I do hope YOU had a taste of what she offers before you came here to critique her with rudeness and incomplete quotes.

It isn't our normal practice to attack new or visiting members by implying their motives are suspicious. Disagree with courtesy all you want but your posts here sound unnecessarily harsh to me.

My apologies to Amy. Thank you for coming by and commenting. I hope you have a way to laugh all this off.

Mary

[twopack]

I apologize Daisy.  I still managed to call you Dolly by the end of that!
Duh.  I guess it's a good thing we're prepared to laugh.

Mary

[twopack]

That sounds like it was a horrifying experience Daisy! I often feel a little disoriented when I first wake up. Even when I'm in my regular sleeping spot I sometimes wake and need to look around and try to place where I am or how my position in the room has changed. Just that is unsettling enough for me.

I guess it can sound a little funny in hindsight but I bet the hospital staff jumped to see what was wrong at the time. It was a drug or MS or unnatural sleep that caused this. You have NO reason to hide from anyone. I hope you decide it isn't necessary.

It doesn’t seem like we should have to bear any extra (unnecessary) burden but sometimes we are the only ones around to educate others about the reality of MS. I know you're not up to that at the moment. Hopefully you will be feeling better soon and when you are back at work you can find a humorous way to update staff education.

I have found that many people respond well to humor. If you can relax and remember you have nothing to be embarrassed about, I think you will find most people are interested and compassionate about what you share.

In the meantime, I'm glad you didn't have that dream/hallucination about eating a marshmallow. It may not be scary but it sure isn't a bit savory. I'm sure it wouldn't go well with that nasty taste the steroid can leave behind.

Thanks for sharing Dolly. I'm glad you knew there is no topic you need to avoid around here.

Mary

[twopack]

With all the construction around here over the weekend it appears some of my posts got quite abbreviated.  I thought they were all there originally.  Maybe I'm the one that wasn't quite there?  

Anyway, I had saved them since we never knew if MH would be up-and-running or down-for-the-count when we clicked on anything.  So I still have complete copies and that's why you'll see two items reposted below.

[Sumanadevii]

I love comedy.  In fact that is what brings income into our home.  I just don't like comedy about sufferings.  

[Guitar_grrrl]

"I love my husband Mr. Valentine - he makes me laugh!"  Jessica Rabbit in "Who Framed Roger Rabbit"

DH has me in stitches a good deal of the time. And when he's not with me, I have a good laugh during my commute home from work because the radio station I listen to does a comedy segment at 5:15 pm.

We must laugh.  Speaking strictly for myself, it keeps me sane.

[Quixotic1]

Amy, I, too extend apologies.  Whether or not you receive pay or an honorarium, it says nothing of your motives.

Everyone on this forum knows that I find many of the MS-related predicaments I find myself in absolutely, though painfully, hilarious.

My problems with incontinence, mice, panty-stealing raccoons and my knitting are long celebrated in fable and song.

Here's one of my favorites:

One night while watching TV I suddenly lost a large amount of visual acuity in my right eye.  Drat!  Yet another thing MS was taking from me.  I continued through the evening trying to keep focus with my left eye.  Later, as I got sleepy I rubbed my eyes - only to discover that the right lens had fallen out of my glasses.  

We get so used to loosing abilities that we sometimes don't even question a new loss!

Quix

[twopack]

Yes Sumanadevii, the page does state that "Amy works as a consultant and guest speaker...

[twopack]

That sounds like it was a horrifying experience Daisy!  I often feel a little disoriented when I first wake up.  Even when I'm in my regular sleeping spot I sometimes wake and need to look around and try to place where I am or how my position in the room has changed.  Just that is unsettling enough for me.

I guess it can sound a little funny in hindsight but I bet the hospital staff jumped to see what was wrong at the time.  It was a drug or MS or unnatural sleep that caused this.  You have NO reason to hide from anyone.  I hope you decide it isn't necessary.

It doesn

[Lulu54]

Amy G is very transparent and doesn't hide behind an alias, as anyone can see by finding her on Linkedin or facebook.  Her consulting includes advisory work with the major MS societies.  Consultant work is a necessary part of connecting agencies, companies and patients, and should not be construed in a negative way.

Thanks everyone for sharing the laughs - I can identify with so many of them.  One of my recent ones  was the night of the webcast-  I tuned in and was having trouble understanding the talking because there was a terrible echo. I was about to abandon listening when I realized I had the show opened in two different browsers and they were slightly out of sync.  I was worried perhaps my brain was garbled.  :-)

keep smiling,
Lulu

[daisy900]

Just finished my first 3 day course of iv steroids .

Had some weird hallucinations the first day the best being that I threw my pillows off the bed on to  my chair , when i turned over a minute later I thought that they were sheepdogs and that they were trying to eat my arms!

So I couldn't suffer in silence and started screaming " Help, Help, The sheepdogs are eating my arms!!"

I actually work in the hospital guess I'll have to concentrate on avoiding people from now on

[twopack]

I should always finish reading a sentence before I start setting it's meaning in my mind.

I read this far, "I did listen for the first 75 minutes the other night until Julie (sarahsmom)  called from the rehab place...."

and thought Lulu stopped listening to the show BECAUSE Julie had called in to the radio show!  I wondered what the poor woman could have said that compelled Lulu to head for the OFF button.  LOL - it's everywhere :)

As for the statement -  "Our world of MS is better because of Amy and others like her who are in the trenches everyday advocating for all of us."
Amy, have you met our Alex (HVAC)?  It seems you two might have some things in common!

I'm more eager than ever to catch up with this program.  May higher powers and mankind both give you their blessings Amy.  Laughter can be a hard sell, even when it's free.

Mary

[Lulu54]

Thanks, Amy, for checking in here. I had sent Amy the link to this thread so she could see the lively conversation that the title to her show had prompted here.  

For the record, Amy doesn't make money off her MS blog  shows. If any of you would like to host a live show, you can find a good website link from her link and start your own on-air, commercial free  broadcast.

Amy  was diagnosed while still very young (in college), long before the DMDs were made available.  She is very proactive about her health and is recognized as a leading patient advocate for the MS community.  She is a regular on health central and is building a website - mssoftserve - with the help of grants from multiple sources.  It will be a self-serve site where you can pull as much or as little info about MS depending on your needs.  

Our world of MS is better because of Amy and others like her who are in the trenches everyday advocating for all of us.  Most recently she participated in the e-patient bill of rights conference, which you can learn more about at

http://www.digitalhealthcoalition.org/content/landmark-roundtable-kicks-project-define-e-patient-bill-rights

I did listen for the first 75 minutes the other night until Julie (sarahsmom)  called from the rehab place and she was a higher priority, so I stopped listening and finished with our own laughs on the phone.  Just the sound of Amy and her friends laughing made me feel better.  

best,
Laura

[twopack]

Thanks for posting the info Amy.  I plan to go listen when I can and take a look at the blog.  I kept hoping someone who listened would let us know what you had to say.

"Finding humor" sounds like one of those things Travis Gleeson describes as "taking something back from MS".  It may not make the MS better.  It sure can help us cope better and grow as people.  Nothing in this world should be able to stop me from doing that.

Mary

[seattlemom2plus]

Thanks so much for sharing your humor, I loved reading your posts, especially the one where you asked who the kid was in the maroon shirt, lol

[Amygtz]

Hi.. Amy Gurowitz here.I'm happy to read that many of you do find humor inspire of the great challenges we endure while living with MS. I guess I called it "Finding" because humor is jot easy to locate in our lives. Being able to get there is my favorite way to cope. If you would like to listen to the show, a podcast is available at http://www.blogtalkradio.com/mslolradio. There was an addendum the next day... Incase you are interested in hearing more. You will also find a link to Jim Sweeney's show.. My MS and Me. He has secondary progressive MS...very advanced symptoms and an incredible sense of humor. Listening to his show is an easy way to laugh about our challenges. If you like the show, follow it on blog talk, and/or friend me on Facebook. We find ways to pull humor and support each other everyday.

[tammy197238]

I have only been recently diagnosed with MS... but in that 5 months since I have been diagnosed...I have cried, I have been angry, I have been emotionless where I felt like I couldnt be happy and I couldnt be sad...and yes I have laughed at myself also.
I'm sure we all have a wide range of emotions we have been through and more that will come.  I can't say I have handled things the same way another person with MS handles issues.  We all have our own way of adapting, our own way of coming to terms with our illness and I dont think that any one of us is wrong in the way we do it because what work with one of us may not work for another.  To each his own.  :)

[tammy197238]

Hows this for funny.  I was multi- tasking at work and I would walk to the adding machine and add checks until the phone rang or a patient came to check out then I stop, help the patient and come back to adding.  Well after several times back and forth I went to the fax machine and started pushing the numbers until I realized I was at the wrong machine...they are both right next to each other and the nurse was right there and saw what I was doing so there was no hiding it.
Or this is even better....we went to a bonfire my family was having.  It was cold and windy so my parents were sitting in their truck waiting to see if they were going start the fire or if it was too windy....so i joined them in the truck.  I was looking around at all the teenagersand kids outside but didnt recognize one of them because they had their back to me so I figured I would just ask who it was.  No one answered me so again I repeated "who is that kid in the maroom sweatshirt?"  My mom turned to me and said "thats your husband"  They honestly thought I was joking.

Last but not least...My husband and I went to marriage counseling and our pastor asked us to state what bothered us most about each other.  We both stated what truly bothered us that the other did....one of my complaints about my husband was that I felt he didnt listen to me.
So at the end of the session pastor asked us to each pick 2 things that the other had said bothered them.  No matter how hard I tried, I could only think of one thing he had said.  Guess who looked like they didn't listen?  UGGHHH  how embarrassing.

[seattlemom2plus]

I couldn't help but read this post, I have a close friend of mine that has MS and I have watched his struggles through the course of 8 years.  His wife has left him because of not being able to cope with this disease.  MS has changed his life tremendously, but he feels it has changed his life for the better.  He is now a motivational speaker going around sharing a positive message of hope.

He smiles from the heart.  And I think it's great if you can take your struggles and transform them into something else--- so Sumanadevii they do say laughter is the best medicine, so I can appreciate your personal outlook on a personal experience :)

[Sumanadevii]

You know, I am me.  I have a different view.  I am not an unhappy person.  If you knew me real life, I do believe you would enjoy my company.  You would find a woman that has a warm wonderful sense of humor.  A very caring woman.  One whose family adores her and is not afraid to say it...including my precious daughters in law.  So, maybe I am a bit different.  Maybe I have found other ways to cope.

I personally do not like to poke fun at sufferings of others nor at my own.  It isn't done in my home.  I don't remember any laughing at my husband this past year as we were told of his kidney cancer.  I don't remember laughing as we buried his parents, my parents, his brother or my baby sister.  

I do remember the tears.  I do remember that after pain our lives went back to normal and laughter filled our home once again.

I guess we just need to respect that we each come from different places, we all think differently and that is what makes us individuals.

[Quixotic1]

Michael Valentine Smith observed that humans laugh often when it is too painful to cry.  Humor is indispensible to my coping with my disease.  And for me and my family it is often the MS itself that we poke fun at and laugh.  

My observation is that victims of all chronic and /or terminal or painful illnesses laugh at what is happening to them as a way to make it through, or to put others at ease.

From my point of view bitterness has no up side and it is self-reinforcing, giving us sharp edges so that we break more easily; a lesson I learned from the Velveteen Rabbit.

Lulu thanks for pointing us to the webcast.

Quix