For Better or Worse

by Jan Blaustone

Jan and Michael Blaustone today, and at their wedding in 1981

Imagine yourself physically fit, athletic in fact, a fire fighter. After six years, youre still happy in your marriage and planning a family. Then youre diagnosed with a neuromuscular disease.

"What exactly is muscular dystrophy?" you ask. "How did I get it? If I have a child, will our baby have it, too?"

And of your spouse you ask, "Will you stay with me? Will you be there for me? Do you still want to have a family with me? Is it too much?"

These are the questions that went through my mind in 1987, at the age of 32, when I was diagnosed with limb-girdle muscular dystrophy. My husbands first reaction was to ask if I was going to be OK. Next, he wanted to know if we could still have a child.

"Not a problem," I countered. "Lets adopt. Its better than risking the health of a new baby when so many are needing a home right now." And so, four years and much paperwork later, we adopted a 6-week-old infant. Our son is 12 years old now, and without my MD diagnosis, we might never have become parents to our wonderful child.

In the first few years, muscular dystrophy didnt seem to be an issue in our marriage. But now that the disease has robbed me of much of my strength and abilities, its progression has made the disease an issue in many respects.

On the verge of our 22nd wedding anniversary, I wonder if my husband, Michael, would be happier if hed married someone without a neuromuscular disease. Or whether Id be better off married to someone whod known I had this disease and had married me still?

Finances

When I left my job as assistant to a best-selling author in 1993 it was mainly because his Nashville, Tenn., office wasnt wheelchair accessible and had stairs at every entry. I was just beginning to use a scooter for distance and a manual wheelchair in my home.

Although Ive replaced much of my previous salary with author royalties of my own, we were under a great deal of financial stress, which ultimately landed us in bankruptcy reorganization. We paid off all of that debt in the following four years, but the episode isnt something were proud of. Money continues to be an issue, largely because of the never-ending costs incurred by durable medical equipment and home improvements to accommodate my mobility changes.

My husband has felt tremendous pressure in becoming the sole caretaker of our household. I had been the breadwinner previously. Today Im "just" the cook, PTA meeting-goer, tax preparer, bill payer, homework organizer, grocery shopper and so on, with part-time work in substitute teaching and writing.

When Michael changed careers to become our financial leader, we both breathed a sigh of relief. But recently he was laid off, along with half of the work force at his job, and his employee benefits were terminated. This left our family with no health insurance, adding to our rising stress level while we embodied the term "uninsurable."

When you marry you take the vows "for better or worse, in sickness or in health," but who really knows? Who, standing at the altar and uttering those vows, really grasps the concept of caring for a loved one? It seemed a simple promise at the time, but then, neither of us had ever known anything contrary to good health.

Caregiving

Things became more stressful a few years back when my husbands uncle was found to have ALS and passed away from complications after only six months. Michael didnt want to help in cleaning him, feeding him even visiting him and making him comfortable. Luckily, this dear friend of mine had health insurance that covered some private nursing and eventually a nursing home.

After Uncle Eddie passed on, my husband and I got into a heated argument over caring for our parents as they grow older and need assistance. It wasnt until then that I realized Michael wasnt the type to take on this kind of task. Not even for someone he loved. Not even for me.

He told me, "I dont want to be the one who wipes your butt. There. Are you happy?"

No, I wasnt happy. He may have said that in the heat of an argument, but its something Ill never forget. The lasting impression it has left with me is that Im becoming a burden to him whether in fact or whether in his consciousness of what may lie ahead.

Chores

While I still can manage to wipe my own butt, thank you, I can no longer stand or walk. And the bathroom door opening is too narrow for my power wheelchair.

Every once in a while I fall and have to ask for Michaels assistance to boost me up into my wheelchair. It makes me feel dependent and a burden, especially when his back gives him problems. When my power chair breaks down (always on a Friday night, never a Monday morning), things become even more intense because I require being pushed in my manual chair.

I remain the chief bottle-washer and cook, but I dont clean house as I used to, and that drives Michael nuts. He complains about the dirt, while my bone of contention is the laundry. Our washer and dryer are down a flight of stairs. I ultimately become a "nag" in order to get the laundry done so I can fold it before were completely out of underwear.

These conflicts may sound trivial compared to what others contend with, but they compound our situation and could be enough to drive us apart.

The difference between asking my son for his assistance and asking my husband for his is huge. Lee is happy to help for the most part. Michael, by contrast, becomes cranky and stressed as hes reminded of my progressing disease.

Tomorrow

What its come down to for me is the haunting question of who will end up caring for me if and when the need arises. I dont want to be separated from my family. And what if something happens to Michael and Im the only one around to feed him and wipe his dribble?

They dont ask about butt and dribble wipes when you recite your vows. Maybe they should.

Having said that, I say you dont throw away a 22-year relationship because its become difficult. We have a history. We have a child. When we married I felt strongly that wed never give up on working to make our relationship last. Marriage takes more than love has to offer. I still have the resolve to endure our unforeseen difficulties, but it takes two. Im banking that we both have what it takes, no matter who wipes my butt.

We know each others misgivings, but we also know the security of each others shoulders and the comfort found in being together through it all. There are times when I cant stand the man, and, no doubt, there are times when he cant stand me.

But those feelings pass in the night, and we realize that, along with the days stress and the uncertainty of tomorrow, staying together is still better than being alone. Knowing that well be there for each other is the key.

At times Im not so sure he wont choose to leave me. I know hes thought about it. Thats when I give it up to a higher power, say my prayers and turn up the electric blanket.

Tomorrow is another day, a fresh start to a better day.