Thursday, June 5, 2008

Carnival of MS Bloggers #12

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"I have embraced my joy and rejected my fear so, while I am truly present, I accept whatever the future may hold. " - Nadja Tizer

Strength in the face of the unknown - that's something to which I aspire daily. With or without multiple sclerosis, each of us do not know exactly what tomorrow or next year may bring. That is a common truth of living. But sometimes what is perceived as strength may stem from compassion, other times it may be a method of self-affirmation.

"I maintain a positive attitude because I want that reflected back on me."
- Shauna in Keep Smiling.
On the side of this blog is a quote I was kindly allowed to put up by the author:
Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them.
The reason this particular quote resonated with me is because on the day of my diagnosis and admission to hospital for treatment my main worry (actually, my only worry) was "how are my parents going to deal with this". My mom, I suspect like most moms, is something of a worry-wart. It was bad enough going off to college at 17 in Nova Scotia when my parents were living in South Korea. I knew they were worrying about me. I came down with mono during the second semester but didn't tell them until I was in recovery mode, because if they knew how sick I had been, they'd have been on the first plane, train, or automobile that would get them to me. Two days of travel to watch me throw up? I don't think so.

I honestly wasn't concerned about what MS was going to do to me. I already had known a couple of people with MS and they seemed to be OK. One gal had terrible tremors but she led a very normal life, married with kids. The other guy was somewhat disabled and had a scooter and had taken early retirement but he seemed to be coping well enough. And I literally figured that if I lost the use of the right side of my body permanently, then so be it, I'll get really good at typing with my left hand and start wearing velcro sneakers.

I was concerned about my parents. Firstly, I thought, Mom will blame herself. You know, "I should have eaten better when I was pregnant with you", "We should have insisted they remove your tonsils at 4 instead of waiting til you were 10, then you wouldn't have had all those infections growing up", "I shouldn't have let you eat that bug when you were 2". Then I thought, they're going to be calculating what my expenses are going to be as a disabled person and try to put together some sort of trust fund when they should spend their money on themselves in retirement. (They were just approaching retirement at the time). And then I thought they'll never sleep soundly again.

Mom and Dad were a little freaked out, as any parent would be. But after I called them, they showed up in the hospital to see me an hour later, and seemed put together. Of course, I was joking with the staff and eavesdropping on other patients' conversations in the ER and wondering how long I'd be in the hospital. The Parental Units put on a very brave face. When the admitting nurse came to fill out some forms she asked me how long I'd had MS. I looked at my watch and said, "About an hour and a half". She laughed, my folks didn't. "You were just diagnosed then", she said, and added, "I've had it for 5 years". I just looked at Mom and smiled. [...]

I spoke with a neighbour recently, a very nice, semi-retired widower. He told me about his wife's battle with cancer and how she carried on as normal as long as possible. She maintained a strength and positive attitude until the very end that he marvelled at. "She had cancer! She was dying! She was suffering! It was hard on me, but it was much worse for her", he told me. "How could she have been smiling when things were going to end for her?" I told him that it may not have been as hard on her physically as he thought. "What's harder perhaps is worrying about how your loved ones will react to the news or the event of a death. She was probably concerned that you'd have a hard time dealing with her passing, so to help ease your mind, she put on a happy face". And I told him that I maintain a positive attitude because I want that reflected back on me.

If I lead by example, others will follow. I hope.

Curb Your Reaction and the Face of MS

Newly-diagnosed just a mere three weeks ago, Nina shares her concern over the Reactions she has received when revealing her diagnosis.
I clearly have no problem with people knowing I have MS. I mean, I can put a face on MS that might be different than what you might expect so it’s surprising to everyone I tell. The reactions of others have been interesting to say the least. The reaction to it is really the only reason I considered keeping this private. If I hear another story about how (insert family member) that died of MS, I might explode. The life expectancy for someone with MS is 95% of the time the same as someone without MS.

I think everyone knows one person that has MS and they can’t do normal daily activities. The problem is that there is another three with MS out there doing normal everyday things with no visible disabilities. Those folks are the “normal” face of MS. They aren’t as open because well, they are out living their lives and don’t have time to deal with other peoples emotional baggage. There is no reason to tell me I will be fine or that it’s going to be ok if I am crying. Don’t argue with me that people live normal lives with MS. Don’t invalidation my sadness. I am allowed to be sad. Not only am I allowed but its normally, accepted and ok. Perfectly ok.

With that said, I am a logical soul and realize that I will be fine. I have a wonderful support system and I am still the normal girl that I was before. So your question might be, how SHOULD one reaction to this kind of news from a friend or loved one? Well, I have a few suggestions:

  • Keep your personal NEGATIVE experiences about MS to yourself. It’s not helpful, really.
  • Research what MS is. I had a coworker later tell me they were reading about MS and I was so comforted by this for some reason. Sort of like he understood what I am or will be going through.
  • Allow them to have emotions and sadness. Keep your comments about how it’ll be ok or it’s not that bad to yourself. You are just uncomfortable with sadness and really, sadness is ok.
  • And finally, one of the best things that has happened to me is the ability to connect positive people living their lives with MS.
"If not me, then who?"

Exactly!! Thank you Nadja for asking this very important question. Nadja was diagnosed less than three months ago and is already providing an excellent example of how one can concentrate on Living! with MS.
I want people to know that MS has really changed me and at times I want to talk about that transformation.
Some people might ask why I would want to be the poster child for MS, why I would put my life out on display so honestly and openly... I would respond, "If not me, then who?" Someone has to speak. We spend life seeking connections and understanding, how can we understand the range of human experience if no one ever speaks? How can we learn to love and respect our fellow man if we can't even be honest about the deepest, darkest recesses of our being? I remember that my mother told me that I don't have to change the world just because I have MS. I counter again, "If not me then who?" We can't sit on our butts and wait for someone to come along and save the world. We have to take responsibility and do it ourselves.
My mentor also cautioned me about putting my life out on display. To that I said, "I don't give a F--- what anyone thinks." She was very taken aback. I didn't mean it in a harsh way. I just meant that MS has taught me to scoff at fear. I used to worry so much about what other people thought. Now I think, "You can't please everyone, you've got to please yourself (I think that line comes from a Credence song)."
Truly the 'cat's pajamas', Nadja shares a simple thing we each can do to help make life better for those of us who face Social Security Disability Insurance.
Last night I attended an MS information session for those recently diagnosed with MS. The topic for the evening was financial planning and insurance. During the session I learned that many people with MS and other degenerative illnesses are forced to quit their job and then lose their health insurance as a result. If they do not immediately qualify for Medicare or Medicaid they are often forced to apply for Social Security Disability Insurance (SSDI).
According to the presentation, "To be entitled to Social Security benefits, a person must have worked 5 of the 10 years immediately before the disability and paid FICA taxes. The disability or impairment must be expected to last for at least 12 months." In addition, "A person becomes Medicare eligible 24 months from the date of the initial application for SSDI-once the SSDI award has been made."

Dear Mr. Legislator:
Here is my question Mr. Legislator: How can the government allow a sick or disabled person to wait up to 24 months for help? This seems unconscionable to me.
I am writing to ask that you provide more funding now for indigent care. I am also asking that you help change the laws that can make a person wait 24 months for the funding and care they need.
Additionally, I would also like to see more funding dedicated to helping poor,uninsured people with MS get their medications. I would specifically like to see funding to pay for interferons that slow the spread of the disease. I would like to see more funding for cortico steroids for those suffering a relapse or flare up of their MS.
Sir, thank you for considering my plea on behalf of those receiving indigent care and the MS sufferers who need insurance immediately.
Nadja Tizer
*Blog Readers please send a letter like this one to your legislator today.
For information regarding current Legislative Issues identified by the National Multiple Sclerosis Society, please visit the Advocacy Toolkit and look here for tips on communicating with your Elected Officials including Representatives and Senators.

This concludes the 12th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 19, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 17, 2008.

Thank you.
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