marriage and CMT

[Guest guest]

From Quest, Vol. 10. No 3 in a special section of marriage and

neuromuscular disorders. The following story if about one CMT couple.

'Leaning Toward Each Other'

Larry Nation taught high school students for years, and coached kids in

football and baseball. But in 1998 he was hit by what felt like a

top-speed tackle by one of his biggest linebackers: Charcot-Marie-Tooth

disease, a disorder that runs in his family.

Suddenly the strong, healthy coach wasn’t able to hold a book for very

long, use the clutch in his truck or, at times, even walk across a room.

Complications from the disease forced the Blanchard, Okla., man to leave

his beloved career, but not

without a fight, he said.

His doctor advised him to quit his job early in the ordeal, but Nation,

54, didn’t agree until 1999. " Humbling " episodes of falling and losing

his grip on a bat let him know it was time. He took medical leave and

eventually early retirement.

Merry Nation hasn’t so much as blinked about supporting her husband

through the challenges that CMT has brought, Larry said, and the couple

credits their incredible love for each other and a strong faith.

Merry said there have been times when she’s felt overwhelmed by the

changes the disease has brought to their lives. But " when you love each

other as much as we do, there’s just no question. Leaning toward each

other and leaning on each other " has just come naturally, she said.

The Nations’ faith has been tested on more than one occasion. In 1999 a

devastating tornado ripped through their neighborhood. " We had extensive

damage on the house just as we were dealing with all this [the CMT], "

Larry said.

Merry took a job in 2000, and then late in 2002 the company closed.

She’s still looking for work.

But with the tests have come " miracles. " For instance, Larry got a

chance to be a stay-at-home grandpa to one of his young granddaughters,

and the two have developed a special bond.

The Nations are sometimes troubled by events that mark the gradual

progression of his disease, and by having to plan their lives around his

daily medications which often make him groggy.

Larry also is self-conscious about his lack of strength despite his

strapping frame.

" In my family, the muscles atrophied but we all were big and remained

big, " he said. " People look at me and they think — at least in my mind

they think — there’s nothing wrong with him, he’s a big, strong guy. "

For example, at the grocery store, " they’ll grab the heavy things like

the milk and the orange juice and all the heavy bags and they’ll

automatically hand them to Larry, " Merry said. " Or one time someone from

the church called to ask if Larry would go change a tire for someone.

That’s something that we just don’t do any longer. "

Although money is tight and their life together isn’t the travel- and

adventure-filled retirement they’d dreamed about, don’t expect the

Nations to complain.

" We had one lifestyle that we had planned on and that didn’t happen. On

one hand you sit around and say, ‘woe is me.’ On the other hand, for

having a disease like this, we have it so easy, and our creator has

provided in every area, " Merry Nation said.

LESSONS LEARNED

communication during challenging times has been extremely

important in keeping their marriage strong, the Nations said.

" I tell him whenever I’m dealing with something or having a down day or

if I’m pretty selfish about something. Then we can talk about it and

that usually helps, " Merry said, adding that her husband does the same.

The two have also learned to treasure their newfound time together —

something that was scarce when he often spent 18 hours a day teaching

and coaching.

And they’ve maintained a strong friendship that’s become the foundation

for a relationship that even the toughest tornado couldn’t budge.

" We’re best friends and that’s made all the difference, " Larry said.

[Guest guest]

Hi Jen,

I am sorry to hear about your separation. Stress effects my CMT

badly. As for my marriage, CMT affects every aspect for my life so I am sure it

effects my marriage. I know I get depressed because of something that I can't

do.

Maybe knowing I had CMT from the beginning has helped. We have been married

happily for 21 years. My husband just told me today that he thanks god everyday

that he has me.

Jen find a new, better man

[Guest guest]

Hi Jen:

I am sorry to hear about your separation. I became separated 27 months ago,

and since then I am now divorced.

There were several issues involved in our break-up, and health problems

obviously affected our marriage. I think my health problems including CMT

affect many things if we let them, and/or our partners are unable to cope

with our shortcomings and accept us as we are.

I think the other issue may have been the progression of CMT during

2000-2003. I certainly was not able to do a lot of things I had done a short

while ago. Because I have been an active member in a 12-step program for the

past 19 years, I learned all about acceptance some time ago. Unfortunately

my former spouse was not so accepting.

In the end I simply looked my ex straight in the eye and told her I had to

leave because " when I'm with you, I can't be me " . Be true to yourself.

My new partner is very accepting of my health issues, and sees me for who I

am. At the age of 56 I can honestly say that I have met by soul-mate and

vise-versa. We believe each other are indeed beautiful from the outside in,

and more importantly from the INSIDE OUT. That's all that really matters.

I believe stress certainly does affect my CMT in a bad way. The pain in my

fingers and toes is much worse if I am stressed.

Regards,

[Guest guest]

Jen,

Keep in mind that you are a wonderful person and you deserve the best life has

to offer. That includes a good and loving hubby. Concentrate on the up side

that is you can find the right person who will love you through thick and thin.

My thoughts are with you.

Cathleen in Arkansas

[Guest guest]

Jen,

My daughter is engaged to a wonderful guy. She has two children and has always

been up front with her CMT. There is a lot that she cannot do, but has a lot of

support from her guy. He treats the children like they are his own and they

have gotten very close. He keeps letting her know that she doesn't have to

work, but she insists on helping out and thank goodness she has a job that

understands her limits and work with her on it.

Sharon

[Guest guest]

I hear that! My husband is not an outdoorsy type either. He likes

motorcycles and dirt. I can ride or watch. No walking

[Guest guest]

Hi Jen,

My first marriage, I believe, was directly affected by my CMT. We

were married when I was only 17 and I was diagnosed a year later. Of

course as time went by (a total of 5 years) I began to show signs.

He loved to dance and ski and hike and anything else I couldn't do.

So he would do that with his friends (male and female). He wouldn't

even take me along to watch.

My current husband (9 years this June) is fantastic. He hates to

dance!

Cristal