Cushion or Patchwork Quilt?

All the MS literature has sections for caregivers. Some of the books have stories of particular caregivers who, although incredibly generous, supportive, and loving, struggle with feelings of helplessness, being overwhelmed by responsibility, anger, acceptance, and fear. They are parents, spouses, and even siblings who seem to automatically become a caregiver or cushion for their family members with MS. What the books don't say is how I can get me one of those caregivers.

As a single mother born into a dysfunctional family that is now scattered around the country, I don't have a caregiver. I am cushionless. When I'm feeling particularly sorry for myself and frightened about the future (only about every other day at this point), I consider some pretty radical steps to get one.

Radical Scenario #1: I consider breaking up with my wonderful boyfriend and going on a serious, finding-a-husband-to-take-care-of-me mission. That might not sound like a big deal for some women, but for me, it's absolutely horrific.

I grew up believing that I would never ever as long as I live get married. My parents' relationship wasn't exactly healthy. To me, marriage meant giving up your name, your identity, your safety, your dreams, your power--marriage meant giving up yourself. I was not interested. I always wanted to have children but once I learned about the birds and the bees, I also figured out that you didn't need a marriage license to make babies.

Meeting my ex-husband did not immediately change my mind. We lived together for 9 years before we got hitched at the town hall one Friday morning, keeping it a secret from almost everyone until the deed was done. The ONLY reason I succumbed at that point was that I wanted to have a baby and it was more important to him that we BE married to have a baby than it was to me to NOT be married. I couldn't do a wedding because I didn't want to think too hard about getting married plus I didn't know how to have an actual wedding with none of the sexist traditional crap.

But married I was, and since he's my ex, you can guess how that worked out. We had two fabulous children, though, so it wasn't a total waste of time.

So, why would I consider marriage to a "provider" as a cure-all for my MS-related anxiety? Maybe it's because of all those fairy tales where princes come and rescue the poor, vulnerable female in need of saving. My hair isn't as long as Rapunzel's, I didn't eat a poison apple like Snow White, or have a wicked stepmother like Cinderella. I guess I'm not really the damsel in distress type so my prince probably has other plans.

Radical Scenario #2: Ruby, Zane, and I move in with my father and his wife in their Sarasota, Florida condo. (There are versions of this one that involve moving in with various friends, maybe even another single mom like Kate & Allie.) In my fantasy, my dad would ask us to come and of course, I wouldn't be required to pay rent or anything so I would no longer have any financial worries. I could write full time and when I get paid for a project, I could travel the world with the kids but have my dad's house as a home base to return to.

This particular fantasy is even more absurd than waiting for my prince to come. Although my father does not drink today, he is still a dry well in many ways when I need support. I mean, I love my dad and I know he loves me but he bought me a Buick when I was diagnosed with MS. Not your typical demonstration of compassion.

The other problem with this plan is that Ruby and Zane have a father who lives in Massachusetts. He has his faults but my ex loves his children and would probably object to me moving them to Florida.

And then there's the fact that Florida is one of the hottest and most humid climates in the U.S. I didn't have an MS diagnosis last summer or any severe symptoms, but I now know that heat exacerbates my illness. I've recently discovered that when I take hot showers, I have more trouble with fatigue, muscle pain, and my eyesight. It was after I went Christmas shopping in my winter coat that I started having Uthoff's Sign symptoms of not being able to focus my eyes while walking. So, there I'd be: lying on the beach and writing and then having to be helped to the car because I wanted to get a tan.

Radical Scenario #3: I move in with my boyfriend, Ken...even though it's been suggested that I NOT make any major changes for the first year after diagnosis. Every time I try to flesh out this particular fantasy, it falls flat since the obstacles to success are everywhere right now. (Although this is a little different than the prince scenario, it has a similar rescue theme which has initial appeal but many drawbacks upon further investigation.)

There's the practical reasons it wouldn't work right now. I can't sell my condo, probably for the next couple of years, because I wouldn't get what I owe. His house is just big enough for his current family and neither one of us has resources to buy a bigger place.

Have I mentioned that Ken isn't ready to move in together? This is probably a good thing right now, too, because of the way it would affect our families. He has a 12-year old son who is, among other things, going through adolescence. Ruby has a bit of a crush on Matt and ALL of his friends, which would probably be a big pain up close and personal. Zane is a big fan of all of Matt's toys which would also get annoying if his visits to Matt's room became a daily instead of weekly occurrence.

Like me, Ken is a single custodial parent but his ex is way less involved and consistent than Ruby and Zane's dad. So, although I would have a partner to share responsibilities, I would also have MORE responsibilities and I'd have to negotiate issues of different parenting styles, different expectations and rules for children, financial issues, etc.

After rejecting these scenarios, I'm left with the reality of my situation. I have MS and am a single mother of two young children and the grown-up daughter of a dysfunctional family now scattered across the country. It is true that I do not have a single caretaker or cushion.

But as my counselor reminded me today, I am not just crashing to the ground, cold and all alone. I have created a patchwork quilt of people to help cushion my fall and keep me warm. If and when I falter, I don't necessarily know who will be able to be there for me in a given situation. But someone always is. I reach out to friends, some family, church, neighbors, and a very kind and loving boyfriend, and I get the support I need. I have been and will continue to be cared for when I need it. I've also learned to be my own caretaker, looking within to find the strength and confidence to get through tough situations.

Who needs a cushion? I have a beautiful, well worn patchwork quilt. Each contributor brings something special and unique to this creation. If you'd like to add a square, let me know.