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Wishing things away is not effective. That’s what a fortune cookie once told me. I believe this truism. But knowing this truth didn’t stop me from wishing that the news Jim told me a few months ago wasn’t true. Earlier this summer, Jim gently broke it to me that he and his wife were moving to North Carolina. And for as rational as I like to believe myself to be, I started to think that maybe if I wished hard enough he really wouldn’t move over 750 miles away.

I am sad because Jim is my main caregiver (next to my husband, Dan, of course). I am eligible for his help because of the MI Choice Medicaid Waiver program. This program makes it possible for me to continue living with Dan in our own home.

You see it all started with a simple question from Kathie, the nurse manager in charge of my home care. She and I were at our wits end after struggling to find a suitable caregiver to help me with my regular activities of daily living. I need help so Dan can continue to work full-time and we’ll know I’m being safely taken care of. Well one day, Kathie asked me if I would be willing to meet her husband to see if he could help me. He wasn’t technically “trained” to be a caregiver, but Kathie was hopeful Jim could be the solution for my care,  and I was hopeful and really had nothing to lose. 

Later that evening, Jim dropped by our house. He met with Dan and me. Almost instantly, we knew this would be a great match!  Over the past four years my list of caregivers has included Diana, Melanie, Leslie, Amy, Libby, Jodi, Kelli, Deb, Ellie and Jen, but my one constant caregiver has been Jim.

He’s much more than a caregiver. He’s my friend. My fix it guy. My Tiger baseball watching buddy. At times, my savior, and I’m not being dramatic–sometime I’ll tell you the story about getting trapped in our van, a little prison on wheels, from which he rescued me. We cook, our specialty is delicious banana bread. He helps me stretch and motivates me to ride my arm bike–kind of a personal trainer. Also, he’s very easy to talk to, share my frustrations with and give me spiritual insight. 

One of the greatest things about him is he’s not just help for me. He’s made Dan’s life easier. He also keeps our cat, Cooper, happy and playful. And he’s become a little trivia buddy for my dad.

Jim and I at Older Michiganians Day 2009.

I’ll miss him and all of his help, problem solving and joke telling. But I’m excited to see him move and grab his future. I’m sure he’s going to have great success and happiness, but I’m going to miss him. I don’t know if I can ever thank him enough. Or if he’ll ever know, what an impression he has made on me and countless other people in my life!

As Jim was leaving my house his last day as my caregiver, when I started feeling sad about his moving, his parting words to me were, “Remember it’s just geography.”

And that’s just like Jim. He’s right. While I will no longer see him several days a week, he will only be a phone call away. I am scared that he’s leaving yet, I look forward to an exciting future. For him and for me!

Goodbye Jim. God bless you. Good luck in your promising, fantastic future. And thank you from the bottom of my heart!!

A few years ago I watched a television interview with Kevin Spacey, one of my favorite actors. He has a quiet charm that I find very appealing. Plus, he seems pretty smart and I think this helps make him a believable actor. I liked his performance best in the 1999 Oscar winning film, American Beauty. I especially loved it when his character, Lester Burnham, delivered the line, “I’m just an ordinary guy who has nothing left to lose.”

Really, haven’t we ALL felt like this before? And while I know it’s only a line from a character in a movie, I bet Spacey understands this sentiment. But, as usual, I digress. Back to his interview.

In it, Spacey talked about a trip he had taken to Paris or the Great Wall in China, you know, someplace beautiful and historic like that. Anyway, he talks about feeling bad for people who travel to these magnificent sites but are so worried about taking a photo to remember the place or moment that they generally miss experiencing it. He believed that we want so badly to capture these moments in photos that we end up letting them pass us by. His advice was to just put down the camera and live in and enjoy the moments as they happen.

This is great advice I often try to follow. I have repeatedly used my self-coined phrase, “Kevin Spacey moment,” to remind me to live in the now. Be there. Enjoy the present. Plus, it makes me feel better when I don’t have my camera with me

Our lunch this past weekend qualified as a “Kevin Spacey moment.” Stacy, the best man from Dan and my wedding, surprised us with a quick visit while he was in town from Indianapolis. The last time we had seen Stacy was when Dan and I went to visit him and his family (and see Dan’s favorite, Bruce Springsteen!) in March 2008. But this last weekend, not only did we get to see Stacy, we got to see his wife, Heather, and their son, Kieran. I would have loved to have taken a photo to remember their surprise visit, but oops, as usual, no camera. 

Instead I savored our time together talking, laughing, and taking plenty of mental pictures. We had a great visit which alas, will be remembered as another “Kevin Spacey moment.”

So the next time you forget your camera or your batteries aren’t charged, remember Kevin Spacey’s words to live in and enjoy the moments as they happen … and this is great advice to follow even when you have a camera with fully charged batteries.

I was pretty humbled when I read this e-mail I received from our friend (and Dan’s coworker) Barbara. She wrote:        

I’ve already made Dan listen to my recap, so now I’ll tell you: The ride was great! We had a rain delay Saturday morning, so it was a long day of riding. We pulled in to MSU at close to 5:30 p.m. But the weather on Sunday was perfect! Everything went well, all the riders and volunteers were so friendly and wonderful. There were about 750 riders. …

On the road between Linden and East Lansing

Barbara was telling me about her adventures in this year’s two-day Bike MS 150, Mid Michigan Great Lakes Breakaway on July 11. I was stuck by the irony that I can’t ride a bike and she’s riding a ridiculously long distance (yes, that was 150 miles ridden over two days!) to raise money to fight MS. And to think that she was doing this to support the fight against our disease.

Going into work at Central Michigan University the Monday morning following the bike ride, I told Barbara that Jennifer and I had been thinking about her the entire weekend. It all started when a violent crack of thunder woke us up at 6 in the morning, to which we thought, “And Barbara’s going for a 75-mile bike ride today?”

I anxiously asked her how everything went. As expected, Barbara was a champion. I stood there in her office doorway captivated by her stories about everything from the rain-delayed start to the rush of riding down the hills at nearly 30 miles per hour. But the image that sticks in my mind most is of Barbara, with thunder rumbling in the distance, loading her bike into her truck at 5 in the morning to make her way down to the start of the race in Linden some two hours away. All this just to ride 150 miles to fight MS. I, like Jennifer, am humbled by Barbara’s efforts.

Starting Day 2

We’re overwhelmed by the support, commitment and generosity Dan and I receive from our friends and family in dealing with this disease. It’s proof that we’re not facing this disease alone.

I desperately dropped to my knees in the silent hallway of the House Office Building in Lansing and told Jennifer to grab me the pen from her purse. There were no tables readily available to write on, so the floor would have to do. I had to jot a quick note to our State Representative Bill Caul.

Jennifer and me in Lansing.

It probably wasn’t the most official way to communicate with a State Representative, but I wanted him to know that we had stopped in to see him as part of the second annual Older Michiganians Day on June 24. This annual rally on the steps of the State Capitol gave Jennifer, me and hundreds of others the opportunity to meet with our elected officials and advocate on issues and programs that affect older Michigan residents.

You’re right. Jennifer and I are 34 and 36 years old, respectively, and hardly fit the profile of “older” Michiganians. But many of the concerns of this demographic, such as in-home care and respite programs for caregivers, are the realities of daily life for this younger Michiganian couple living with multiple sclerosis. And so this year, much like last year, we went and advocated for older Michiganians by advocating for ourselves when we met with our legislators and their legislative aides.

Our personal primary focus was to advocate for continued and increased funding for the MI Choice Medicaid Waiver Program. It truly is this program that makes our life as a “normal” married couple possible. Through this program Jennifer receives the in-home care she needs to help her with the activities of daily living such as cooking, cleaning, grocery shopping, and (most importantly) safely transferring to go to the bathroom. This, in turn, enables me to continue working at Central Michigan University and know that my wife is receiving the care she needs.

Jennifer always explains to our legislators that she very easily could qualify to live in a nursing home, but this program makes it possible for her to continue living in her own home and contributing to the community. And this program saves the state money: While it costs the state $150 a day for a person to live in a nursing home, it costs only $50 to provide the care that helps a person stay in their own home. In fact, in her 2010 Budget Letter Michigan Gov. Jennifer Granholm stated, “In the last seven years, we have saved more than $178 million by expanding community-based service options for seniors and the disabled.”

Jennifer meets Lt. Gov. Cherry.

While last year we met face-to-face with Rep. Caul and our State Senator Alan Cropsey, emergency sessions to discuss and debate K-12 funding prevented us from actually meeting with them at this year’s Older Michiganians Day. But we did get to meet at length with Sen. Cropsey’s legislative aide and Jennifer even got to meet Lt. Gov. John Cherry and put in a plug for the MI Choice Medicaid Waiver.

Sen. Caul also has on record a letter from two constituents thanking him for his service and asking him for his help in supporting this important state program.