Carnival of MS Bloggers #103

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

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation.  You can request reasonable accommodation under the ADA if:

• You work for an ADA-covered employer
• You are “qualified” to do the job; AND
• You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

1. You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
2. Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

• How is MS affecting your job, potential job, or application process?
• Why are you requesting accommodations?
• What accommodations or changes to your work will be effective?
• What information will you need to provide to your employer (or potential employer)?
• When should you speak with your employer (or potential employer)?
• Who should you involve in the conversation?
• How should you follow-up on your request?
• What are your rights if things go wrong?

These resources can provide more help and information:

• The Win-Win Approach to Reasonable Accommodations
• ADA - Your Employment Rights as an Individual With a Disability
• Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
• SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.


This concludes the 103rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 22, 2011. 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, December 20, 2011.

Thank you.

Comments for this post.