Our Most Delightful Journey: March 2009

Since returning from the MS retreat on Saturday, I've been mulling over the thoughts that have appeared in my head. Many of these thoughts have visited before and have been dealt with - at least as well as can be expected when dealing with a disease whose presence threatens to take over your life. Some of the thoughts are new and I'm figuring out how to deal with them.

I've been trying very hard over the past few weeks to quiet my thoughts. It wasn't until I stopped to think about it - seems silly to me to stop to think about thinking - that I realized that I think a lot, and most of the time, what I think about it nonsensical and unimportant. All this junk takes up a lot of space in my head, thus leaving little room for the more important issues that crop up from time to time. I needed to learn to be more quiet, push away these extraneous pieces of randomness and leave room for more important things.

Sadly, the junk doesn't know it's not wanted and so returned quite heavily this weekend. I've spent the past couple of days trying to sweep them back out and have managed to do so - although I may have missed a speck or two. No one's perfect!

The retreat. Nothing says fun like an overnight stay at the beach, in the middle of a cold and wintry March, surrounded by a group of 23 strangers, half of whom suffer from the same disease you're getting to know. This weekend was the first weekend retreat offered by the Eastern NC chapter of the MS Society for newly diagnosed people. That's us, and 21 of our newest friends. A brief rundown of the retreat goes like this: we met, mingled and sat through two powerpoint presentations given by a nurse at my neurology office and then we broke into two groups (those with MS and the caregivers) where we (those with MS) listened to a therapist talk though her powerpoint presentation and Joe's group (the caregivers) talked with a therapist who runs support groups for people with cancer. From all accounts, that was the best part of the weekend (sadly, our small group did not have the same experience with our therapist - moving onto the next slide when there's a lull in the conversation does not facilitate much heartfelt sharing). And the one thing missing from the experience was the super-engaging, motivational MS-person - someone who has had the disease for longer than 1 month to 1 year, who could share his/her story with a group of us who don't know what the future holds and aren't sure how to get there. I wrote that in my evaluation at the end of it all.

For both Joe and myself, the conversations we had with a small group we met up with made the trip worthwhile. But as Joe's group's therapist said: Raise your hand if you've met some incredible people here. {all hands rise}. Now, put your hands down if you wish you'd never met these people.

Guess how many hands were still up at the end of that.

We met some incredible people this weekend, people we both hope to stay in touch with, but we both agree: we wish we'd never met them.

I've often wanted to be a part of a group of people who are similar to me. I didn't expect to meet these people at a "Welcome to your disease" conference. "To your left you'll see a list of ailments you might encounter: incontinence, blurry vision, spasticity. To your right, the list of medications we use to treat such ailments." We all either have MS or share or lives with someone who has. But such as the disease goes, no two cases in the room were the same. I was one of two 34-year-olds, but the other girl had blurry vision; the other girl who had weird leg sensations also had face pain and a whole slew of other MS-related problems. I had gone hoping to find another young couple facing the same issues we're dealing with on a daily basis - should we have another child? how to deal with the risks to that child and how to know that having another child is alright, even though those bad thoughts creep into your head almost every time you think about it. There was no such couple. As we felt when we arrived, I feel still: alone. Alone (together with Joe) in experience that we're facing. I know of no one who has grappled with the same feelings. I know of people who have gone through a journey of infertility but this experience for me brings heartache and bitterness and sadness all its own. When people say, "Just do it" it's not that easy - at least not for me. Two months of trying, two months ending with nothing, and the thoughts creep back. I hear the doctor's words: Give it six months, and if you're not pregnant, come back and we'll talk about medication. Six months. Two down. That leaves me with four. I try really hard not to be obsessive but sometimes I'm not bigger than it. Sometimes I'm defeated. But the next day it all seems doable.

I'm tired of the rollercoaster.

This weekend was a replay of the emotions we experienced - and to a large part - worked through over the past two months. While it was good to talk with other people about their experiences, it was also quite negative. There's a lot of anger, bitterness and sadness and we were surrounded by it all weekend. If you've ever experience loss or hardship that looks anything like what we're going through, you'll understand. You can feel great for two weeks and then someone says something or you see something that sends you spiraling back to the beginning. For me, it can be something as simple as someone asking me how I'm feeling. If I hadn't thought that day about the MS, this question brings it straight to the front. Talking with our new friends about their and our experiences with MRIs, doctors, specialists, scheduling appointments, how we were told, our symptoms - it was like living it all over again, but this time with the anger and bitterness of 21 more people. That's some pretty powerful energy - but not the kind of energy we need to have around us.

I left the weekend wanting to keep in touch with a few of the people we met and also wanting to run and hide from the MS Society so that I'd never receive another mailing about a fun group event. No thanks, I politely decline to be a part of that group. But I'm already a part of that group - and that is still a difficult thing to accept. I am not in denial about having MS. Never went to an appointment hoping and believing that I had something that was misdiagnosed; ok, so a little part of me thought, "Yeah, it would be nice if they found Lyme disease, but I doubt that's going to happen." - so yes, I tossed the idea around but ended up catching the big, giant, ugly MS ball instead. So much for denial.

But for acceptance... Some days I'm still not sure what that means or how I'm supposed to do that. For me, acceptance is almost like settling. I'm sure you know someone who settled for this girl or that guy because someone better didn't come along and because that other person was good enough. It's really hard for me to suddenly settle for having something so unwanted and so threatening and so ugly when I'm not a settler. How do you do that? I know when I fully accept that fact that I have MS, I won't take it as an invitation to sit on my rump and just do nothing. There have been some woe-is-me, but that's natural and healthy, I think, as long as it doesn't overwhelm. I have already made more changes to my life than I had even thought about 3 months ago. I eat less gluten, I eat less dairy, I exercise everyday - I'm probably healthier now than I was the day before the first doctor's appointment - yet, I still have MS. What does acceptance look like? I know I'm not there yet - or maybe I am? I find there are times when I'm sitting quietly and I am very aware of the fact that there are 5 lesions on my brain and 1 on my neck. Those things are not supposed to be there and I have them. This saddens me greatly and I have to fight the urge to cry whenever these thoughts creep into my head. Some days the tears win.

So I try to look at all of this as a learning experience. I'm learning there are better ways to eat (and better ways to bake brownies - I've learned that a lot lately!). I'm learning that I'm stronger - and actually have arm muscles - when I lift weights. I'm learning that concentrating on what I think about so that I think about what's important makes me a calmer person. I've known all along - but am learning so even more - that I have the most supportive person in the world with me at every step, with tears of his own, embracing my disease as part of his journey. I know that I have an amazing little girl who is super smart - even her doctor said so! - and I'm learning more and more each day that there is no lovelier word than "Mama."

As I'm learning, I'm thinking more and more about things. I don't understand things of the world and this has always frustrated me. In response to so many words of encouragement from people who tell me that God is with me and will take care of me, I have wished so many times that I had a way to just give all of this to someone else to take care of. I wish I could say with all certainty that I know God has a plan for me and that I'll be alright. One of the most frustrating things with MS is that there are no set pathways for the disease. I could fine this week and in a wheelchair next year. Does that mean God's taking care of me? I don't know what it all means, but I'm still trying to find a place where I can feel comfortable with what I "know." Right now I'm not sure what I know or how I'll know what I'll know. I just know I'm confused and scared and trying to reach a place of calm and comfort.

In the meantime, I'm doing a lot of reading. This comes from the author's note from The Devil and Miss Prym by Paulo Coelho.

"...Each of the three books is concerned with a week in the life of ordinary people, all of whom find themselves suddenly confronted by love, death and power. I have always believed that in the lives of individuals, just as in society at large, the profoundest changes take place within a very reduced time frame. When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny."

I experienced that week. Seven days from the first appointment with my general practitioner who drew bloodwork to check for vitamin deficiencies to the day the neurologist handed me a diagnosis. Seven days. How quickly one little week can change the course of a life forever. One little week has changed our family in ways that are too difficult to even comprehend at times. One little week has not gotten the better of us, though. But that doesn't mean it won't try to drag us down from time to time. We're learning - and with learning comes growth. One day we'll be bigger than that one little week.

One day.