Thursday, November 29, 2012

Trying to Make the Holidays Less Overwhelming

Julie Stachowiak, PhD
Writer, ms.about.com

 
Having just made it through Thanksgiving, I am reminded of how overwhelming the holidays can be. For those of us living with MS, just attending a holiday event can be tiring. Fatigue or cognitive issues can make it difficult to be in a crowd and participate in conversations for extended periods of time. Beyond that, we are often given or volunteer for food or decoration duties, adding another layer of challenges.

In my case, I am a fairly decent cook, so I am often given the job of cooking for family gatherings, especially since pretty much everyone else loathes the task. This year, people asked for favorites that I had made in years past, and also threw a couple of new requests on the pile. As a result, I found myself making the bulk of the food to bring to our Thanksgiving gathering for 14 people.

Honestly, I didn't feel like doing it. I was tired and didn't want to cook for the masses. Besides that, I didn't feel like going at all – it was going to be loud (with a football game constantly playing on the giant television that can be seen and heard from the kitchen and dining room) and chaotic, with four dogs and seven kids. Don't get me wrong, I did really want to see my family, but I knew that this setting would not be ideal for me to enjoy them.

However, I did it. I cooked and packed up all the food. I cooked some more after I arrived. I served. I smiled. I endured the noise of the football game. I helped clean and I went home with my family. I collapsed.

Now, I know what advice I would give to myself: Delegate the cooking to others. Be honest with people about how tired you get. Ask that the football game be turned down. Limit your time at the gathering. Look out for yourself.

I give this kind of advice all the time (see my blogs Holiday Hazards to Avoid for People with Multiple Sclerosis and Surviving Holiday Gatherings with Multiple Sclerosis). However, when it comes to myself, I seem to forget my own ideas about self-preservation.

In gearing up for a similar scene at Christmas, this time I really am going to try to look out for myself a little better. I am going to find the right balance of making sure that my family is having fun and not wearing myself out in the pursuit of “perfect” holiday moments.

With these goals in mind, I am going to commit to doing three things for myself:
  1. Make sure that I have a quiet place to retreat to during the event and that I spend some time in it, by myself or in quiet conversation with one person with whom I would like to catch up. 
  2. Agree to make one menu item only (and offer to scope out a place where the rest can be purchased, if necessary). 
  3. Be honest when people ask how I'm doing. Maybe not lay out the full picture, but let people know that, for me, taking big get-togethers in small chunks is the best way to have a nice holiday.
What about you? Are holidays difficult for you? Do you tend to exhaust yourself trying to meet the expectations of others (and yourself)? Do you have any tips on how to avoid holiday burn-out for the rest of us? I would love to hear your stories and comments.

Wednesday, November 21, 2012

Living Like It's 1991

Michael Wentink 
Blogger, A Road Less Traveled...

“Well, at least 1991 was a good year.”

My childhood friend, Mark, sent me that text not long after another heartbreaking loss of our favorite team, the Washington Redskins. Unfortunately, it was a result we’ve come to expect from the team of our youth. It wasn’t always that way.

GLORY DAYS

An Army brat, I moved with my family to Northern Virginia in the early ’80s. I grew up 15 miles from the White House but back then even politics took a backseat to the Redskins. There were very few solemn cases of The Mondays from September – January in the Washington, D.C. area; instead we usually started each new week basking in the afterglow of another victory.    

In 1991, the Redskins finished 14-2, breezed through the playoffs and won their third Super Bowl in nine years. It all seemed so easy, expected and natural. Sunday afternoons were joyous occasions spent with friends; the smiles, the cheering, the enticing smells of pizza, nachos and homemade grilled cheese sandwiches – it was all too perfect…and we thought it would last forever.

LIVING THE DREAM

In the spring of 2007, I was still toasting the birth of our first child the previous December and when I wasn’t helping my wife change diapers, I was finishing up my MBA. Good things were happening in my career, with an upward advancement into a Director’s role at my company. We had the luxury of Angela shifting to a part-time job so she could spend more time with our new baby boy. It was all so perfect, our future lay sparkling ahead. We truly were living the dream … sometimes I wish we had taken a few more moments to enjoy it.

Over the past several years, I had mysterious physical ailments. Whether they were pains and numbness or a decrease in coordination, I had presumed these oddities were side effects from a hectic life or just the realities of growing older.  In my mind, it was a small (and maybe expected?) price to pay in an attempt to further my education while navigating the corporate ladder.

WAKE UP TIME

But seemingly overnight, my health worsened and instead of numbness, tingling or random abdominal pains, things became more serious with falls down the stairs, ER visits, hospital stays and endless visits to numerous doctors … I lost count of the number of times I was tested for brain tumors or exotic diseases that most have never heard of. Along the path, I was even misdiagnosed with Crohn’s Disease. Eventually, a diagnosis of optic neuritis led to these mysteries being solved at The Mayo Clinic in May of 2008, where I learned that I have multiple sclerosis.

I dream of feeling energetic again, being able to stand in place without pain, and living without daily medication and monthly infusions to treat my MS. I lived to be active. My wife would always chuckle, seeing me take the stairs when there was an escalator, walking when I could have driven, carrying all the groceries in one trip. I loved running, playing racquetball, going on walks with my family. I lived this way to offset a world that was dominated by sitting in traffic, cubicles and classrooms and without it sometimes I feel something’s missing…I know something’s missing.

GOLDEN MOMENTS

Having a chronic disease like MS has served as my gateway to a greater appreciation for day-to-day life. The high moments are so much richer because I know how far down the lows can go. I might not be able to celebrate like its 1991 or move like it is 2006, but my spirit remains unfettered to make every new day better than the last.

Each new season I hope will be a return to the Redskins of my youth, when the wins were expected and the celebrations were constant. Perhaps, I think that a return to the Redskins’ gloried past means a return to my world before MS. Life was so innocent then. My health seemed so perfect.

I wish I could reach out to that teenager I was in 1991 and share my new belief that all moments are golden moments in life … with family, friends, your career or even just cheering for your favorite team. The expected might actually be fleeting and good health is not guaranteed. I live my life now thankful for each day and savoring the special moments – the Redskins might not win the Super Bowl in 2013, but I’ll continue to live and enjoy my life as if they had. 


In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com.


Thursday, November 15, 2012

Is This Normal?

Laurie Clements Lambeth
 
At a recent MS clinic appointment, I listed my cognitive lapses over the past year.  I have mild cognitive impairment; I was tested after twenty-five years with MS and a few suspicions that I wasn’t quite up to my old speed of thought.  Normal enough to others, but not me. Dividing my attention, shifting focus, and finding words have steadily grown difficult. But these three events were different: sudden, strange, like the seizure I had nearly twenty years ago: misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets.

So I asked the Physician’s Assistant the question we all ask at some point: “Is this normal?”


Supermarket Blip

My husband was somewhere behind me, off getting milk while I ducked the supermarket scooter into a quiet aisle. He approached and said, “Chobani’s on offer.”

“Chobani?” I said.

“You know, Chobani.”

“What  . . . is . . . chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought this was one of them. The startled expression came when he realized I was far from joking. I was confused.

“You really don’t remember what Chobani is?” he said.

“No.” I panicked. “Is it bread?” I thought of another word that begins with a ch- sound, but couldn’t place it. Ciabatta.        

Two years before, I had come home from a trip to a Maryland writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there.   So you can imagine his surprise that I did not recognize the name.  I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out.


Oh . . . Blip

I forgot.  Please hold. I need to find my list in my purse to jog my memory. Listen to some muzak while you wait, or talk amongst yourselves. La la la . . .

Found it: my list says, “time concept.”

I was scheduled for a hair cut and color at 1:00 pm. It takes me half an hour to forty-five minutes to drive to the salon. I was aware of these things. At 11:45 I was answering email and remembered feeling as though I had plenty of time. I’ll just finish this up, I thought. I took a shower. Then it was 12:20. I grabbed a book, dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09?

There was no way I could make it. I was beyond late. Perplexed.  At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late, but somehow didn’t.

I couldn’t tie it together.  Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my appointment. Let’s put an imaginary pin down and call it 1:00. The other strand of yarn represents the amount of time needed to prepare and drive to 1:00. The problem is, in my head the two strands of yarn were very far apart, and parallel.  I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object.


Parking Blip

At the vet’s office there’s a steep little hill you need to accelerate to climb, so I drove up as usual. At the top I eased the brake. The car sped up. Why aren’t we stopping, I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas pedal, not the brake. I lifted my foot and slammed on the brake just in time.  

It took me two days to tell anyone. No structural harm, but I was shaken, ashamed, confused.
           
When I asked the MS clinic PA if having cognitive blips is “normal,” she paused a moment.

“It’s—common,” she said, her voice measured and lifting.

And I was grateful: more common than normal, strange but shared.




Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry.  Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com.