Uninvited Commentary Invites Enlightenment

A friend was introducing me to his second wife. I don't know if he expected me to hear or not, but he said to her "such a shame, she was knockout". Not as bad the "pretty girl, then dead comment" but it made me feel bad.

I myself have MS..I have 2 sister's that have it as well, your story is heartwarming. But it's not MS that you die from it, it's all the other ailments that cause ones demise and that's very heartbreaking...

Why not try HSCT?

I am 38 and just diagnosed with MS this week after 8 years. Now everything I've gone through these past 8 years makes sense. Now I know why I hurt some days and feel normal the next. Why I can't swallow one day and not other days. Why I can't speak some days even though I know what I want to say. But at the same time i didn't know how to feel about having ms, I've felt numb the past couple days. I really needed this article today and it helped change the way I was looking and thinking about how life was going to be. Thank you for sharing this!

Hi Jennifer,
thank you for your thoughts. I am totally with you.
Although some of my symptoms are to the lower limbs, it is quite similar. I have a weard walk :). Everything else looks “normal”.
Sometimes I get asked “why do you have priority in queues?” or “why do you have that disabled badge for parking?” ... if you can work in several countries, travel for business or pleasure, if you can drive, if you can give some speeches, if you….. bla, bla, bla…
All that takes courage, training and a lot of work. Very few people know about the time every week some of us spend in therapy, the medicines, the exhaustion. Generally, all everybody see is our smiles, even for the pities. And that takes training. A lot of good and healthy training. God bless you.

Thank you, Jennifer. I have experienced similar interactions and while I used to get angry -- "how dare you assume anything about me?!" -- I've become more philosophical, educating one ignorant commentator at a time ;)

Take good care and stay true to yourself!
Bonni

Awkward! I was told over the last three days that I was, "My hero!" "Living your life!" and another comment that I can't remember..cog fog.

Because I was using my outdoor rollator to walk on the beach and on a a very difficult forest path in Parksville on Vancouver Island.

I'm a 71 year old male so it goes with that territory. I have lots of hand and shoulder pain but I don't notice it when I'm walking.

I wear magnetic button shirts and big T-shirts so that I can get them on. Constant accommodation.

But I'm living a wonderful life and every day is a good day!

Thanks for your writing.

Awkward! I was told over the last three days that I was, "My hero!" "Living your life!" and another comment that I can't remember..cog fog.

Because I was using my outdoor rollator to walk on the beach and on a a very difficult forest path in Parksville on Vancouver Island.

I'm a 71 year old male so it goes with that territory. I have lots of hand and shoulder pain but I don't notice it when I'm walking.

I wear magnetic button shirts and big T-shirts so that I can get them on. Constant accommodation.

But I'm living a wonderful life and every day is a good day!

Thanks for your writing.

I fly Southwest and while I am not at the stage where I feel the need to get a blue card and special treatment, I feel some respect is in order. Have been nearly knocked over on the jetway by baggage handlers who apparently think I am going for a leisurely stroll. I am not really walking slow, but I am not walking hurriedly so as not to lose balance after a long flight. You can tell their intent by how fast they come up to right on your heels, grunting and then trying to brush past. Air travel is a bitch for trying to maintain independence, for many I think.

Thank you for eloquence in expressing how you feel and how you deal with your disease.

I have a younger sister that died at age 51 from her MS in 2006. She has a daughter getting married this month. There is such sadness in her heart that her mother is not here for this blessed event. We all carry burdens such as yours. Keep your chin up and keep smiling through the pain. Thank you.

This was a good article. Some days I need to be reminded how blessed I am.

I loved reading your comments Jennifer and I know we can all relate to this. I an 52, and an Aussie and have Relapsing Remitting MS(diagnosed 10 years) and C.I.D.P (diagnosed 19 years) and I have both good and bad days. Bad days usually involve an extremely difficult cannulation (every 3 weeks) and my stubbornness to get a port.
Somehow.. in my mind, this has been the holy grail for being like everybody else. If I don't have a port as a constant reminder of my conditions I can be...like everybody else. Crazy I know.
I have gotten used to scars so it is not that and I have many of them... from years of unsuccessful fertility attempts which resulted in a ruptured bowel, ileostomy, reinflated lungs etc etc so, it is not the scar.
Dont' get me wrong, I have a Great life. I work full time in an interesting stimulating job, I have an amazing partner, great family and medical support.
Maybe, in my sometimes foggy brain this is my last stand.
Luckily, no one can see my scars (the bikini is a NO) and my gait is not too bad.
But my body and conditions have ruled my life albeit in the background and many people including my co workers are not aware I have 1/2 day off every 3 weeks for my treatment or the struggle some mornings to get my butt out of bed. Many have also forgotten my years of fertility struggles.
But this port thing which I keep putting off and suffering 6 cannulation attempts to my scarred and dodgy veins every 3 weeks is what I struggle with. That little port...
Sometimes it is just the little things :)
Maree