Team Scibienski

When Pete was first diagnosed, our son's girlfriend (now wife) suggested that we register for an MS walk together. She said, "We'll have our own Team Scibienski." The sentiment was loving and she intended to find a way to come closer to me in my grief but all I heard was that we needed a "Team Scibienski." And at the time, I couldn't imagine needing that much help. Will our life really need a team of help? After I thought about her idea for a couple days, I told her that I wasn't ready for "Team Scibienski." She lovingly gave me grace to be me and she found other ways to relate to me in my grief.

A lot of people do exactly what she suggested - rushing into the cause or jumping into friendship with people who share their particular chronic illness. We couldn't do it. Quite frankly, we didn't want to be with people who had MS. We had plenty of MS ourselves. I know others feel like we do. In fact the leader of the first MS support group we attended blurted out, "I hate being with people with MS." He was the leader for crying out loud!

We couldn't do it. It's actually not until recently that either Pete or myself has been able to research without tears overwhelming us. At some point our youngest son even said to his father, "Why aren't you reading everything you can get your hands on? That's what you taught us to do. We have a question; we look it up." My only answer: Denial and Fear are two of the most powerful forces in our world.

I wasn't ready to need an entire team of people to take care of my husband. I didn't really have a handle on what our needs were: his or my needs. So Team Scibienski was out of the question.

As time went by, we did begin to form a team of folks who care for us. It began with our primary care doc (an internist); she was the first to share MS with us. A neurologist was needed to confirm and when we finally settled on the third neurologist, she would manage our team.) We needed a cardiologist to distinguish some confusion on the MRI. And when other symptoms emerge, we add players to our team. Right now there are seven physicians who play regularly.

We've been hanging out with our team lately. Anyone who cares for someone with a chronic illness can attest that there are seasons in our life that are spent in the doctor's office. One visit often leads to another visit and then potentially to another. They work together and the best advice we ever got was "always give them a list of other doctors with whom you would like them to copy their office notes." It's easy and they understand that working together is essential on Team Scibienski.

In addition to the physician players on our team, there's me. Sometimes I feel like the coach, sometimes the over-used pitcher and sometimes I'm running all over the field. It's in those times though... the times when I'm clearly playing too many positions that I remember the initial offer for Team Scibienski. And then I realize I'm not alone. Our immediate family remains suited up, just like me. And our larger family probably keeps their uniform underneath their work clothes like Clark Kent. Our community of faith is one phone call away and they're ready to pitch, field flies, or sell t-shirts.

Our youngest son youngest son wants to push dad in an MS walk this fall. I'm still not sure about joining them. But I'm wondering - with so many people on our team already - maybe I should at least make t-shirts.

Boys Meet Doctor, part two

We were right outside of Philadelphia when a conversation ensued about the value of social media. Neither son is on Facebook; one signed up for twitter just to follow a guy called "shit my dad says." (If you haven't checked him out, please do so. If you don't think he's funny, try "Jesus never said.")

Anyway, while I was defending the merits of social media, I missed my exit to the hospital. Now I'm trying to follow the GPS as it tells me that it's
recalculating. After finding myself in downtown Philadelphia, I say rather loudly, "everyone stop talking so I can get us to the doctor's office.

Three more turns and we're on our way down a familiar stretch of road when Pete erupts the social media conversation with his "dad voice" to say, "OK, here's what's gonna happen. (silence) Beth's going to pull up to the valet. One of you is going to get my rollator, the other is going to get the door." After a brief moment to process, one of them says, "Ok Dad, when it's time - just yell 'Go team red." Pete informs them that he'll do no such thing. But just as he I pulled up to the valet and Pete yelled, "Go team red."

Everyone jumps out, one with the door, the other with the rollator, me handing over the keys and in minutes we're turning the corner to the neurology suite.

I resisted for a long time asking the boys for help. They're not boys; they're 34 and 29 years old. They're successful men. One with a family of his own. But I want them to be Pete's sons, not his caregiver. I want to shield them from that responsibility. That's my "mom" reason.

But there is another reason: I don't want them to have to care for me. I'm the caregiver not the care receiver. I'd only need their help if I lacked skills or resources. Perhaps I'd need their help if I got in over my head. Their father is clearly in over his head. He has a chronic illness. Their father needs help, not me.

Here's the thing... I haven't fooled them. They know that I need help and they've been trying to find ways to help me for years. (When Dan drops our granddaughter, Julia off on Friday, he takes the garbage out.) They know that we both need help. And they would love nothing more than to offer concrete, tangible help but I'd to be self-sufficient.

After one day of taking them to the doctor with me, I've learned my lesson.

They're funny and clever and strong and smart. I need them with me as much as they need me with them. I spent years feeling alone while all the while they were right there with me. I spent years feeling weak when two of the strongest men I know were a phone call away. I spent years trying to hold things together when together we are meant to hold one another.

I understand why they don't completely understand the merits of social media. They don't need a website to be connected to that which is important to them. We're all right here in the car... and all anyone has to say is "Go team red."

voyeurism

I renewed my commitment to writing and that worked for three days. But I took the last four off. Why do I do that?

I'll tell you why... I told my family that I had starting writing again. And they're the reason that I'm afraid to write. Let me say more about that.

The reason that I wanted to write down my thoughts about grief was because I couldn't find a book that resonated with me. Don't get me wrong; there are shelves filled with books on grief. There are memoirs from caregivers that could keep me busy for a year. The book that I'm looking for would be: written by someone who is caring for his or her spouse and... whose spouse does not have Alzheimer's disease and... whose spouse is not fighting cancer.

Why the narrow search? The journey of someone caring for his or her parents is different than someone caring for a spouse. While Alzheimer's disease is horrible i is really different than multiple sclerosis. And people fighting cancer... well, that's just it - they're "fighting" cancer. I have yet to hear a neurologist say, "we're gonna beat this thing, Pete!" It's not that they don't want to find a cure for MS. Believe me, they do! It's that there isn't a cure for MS. And Pete's body is actually fighting itself so there is no punching allowed. So much of the caring for a person with MS is about accepting and loving and embracing and shrugging and sleeping and hoping that tomorrow will be better.

The image of fighting isn't one I'm looking for. I have spent hours, days, months and maybe even the whole first two years of his diagnosis questioning and wondering about a symptom of MS that has no rhyme or reason... it's just a symptom of MS. Say Hello to it. Cry a little. Have another cup of coffee.

All that to say... a memoir written by someone caring for a parent or someone fighting cancer or someone suffering through Alzheimer's disease does not share my journey. And I longed desperately for a book that I could point to and say, "Look, this person knows what I'm going through." His wife is sick. Or she gets angry. He's sad. She's depressed. He feels hopeless and alone sometimes. She faces mini-deaths every day.

I know why this book isn't written. And it is the very reason that keeps me from writing.

My spouse will read this book. He's not dying like a parent might be. My family and friends will read this book and while they know that I'm hurting do I really want them to see this much of me?

The problem with a book by a caregiver to her spouse who suffers from multiple sclerosis is that it's an incredibly vulnerable endeavor. And while I have desperately wanted to see into other people's lives so that I don't feel so vulnerable, I'm not sure that I'm comfortable with others seeing my vulnerability.

Doctors

Most people go to the doctor once a year. Not true for those of us dealing with chronic illness. Doctors are practically part of our family. Some of our doctors know our weekly activities and they remember our kid's names.

Take for example, our chiropractors... Dr. Mike and Dr. Heidi.

I've gone to a chiropractor my whole life. This was new for Pete. Around the 2nd year of diagnosis, he thought he'd try it. Because of his difficulty walking, he often twists and strains his back, moving his hips out of alignment. After his first adjustment, he was able to balance better and... he slept through the night. He could not remember sleeping through the night. Sleep for the chronically ill is like currency. He spends so much more energy doing daily activities than the rest of us. (His nervous system does work properly so even for his brain to tell his lg to move, it requires more energy.) Sleep is his friend.

He was sold.

For him, a weekly adjustment helps his overall quality of life. But Dr. Mike and Dr. Heidi like to see me every other week.

Without question, I hold most of my stress in my back and as a primary caregiver, there is some stress in my life. But you might be asking, "every other week? You really need to go to the chiropractor every other week?" Between you and me, I'm not so sure about that either. But here is what I am sure of... it's one time in my week where someone else cares for me.

They look me in the eye and ask me how I'm doing. They touch me, lovingly as a physician and companion on life's journey. They know a portion of my life better than anyone else. And they hold that knowledge in trust.

One week, Pete was having a particularly bad go of walking. And he stumbled as he entered the waiting room. Dr. Mike took over caregiving, offered assistance and got him started with treatment. When he came out, he motioned for me to come back and he led me into their coffee room. He shut the door and looked me in the eyes and asked (fully expecting an honest answer), "How are you?"

I started to say that this type of thing happens. Pete get tired and this is a bad week. And he interrupted me and said, "Yes, but how are you with all of this?" He told me about his dad who also suffers with a chronic illness and he wanted me to know that he understood the frustrations of being a caregiver. He understood the phrase, "I wish that he would just..."

I don't know about other caregivers but I always fight wondering whether if we just did this one thing differently, life would be easier. And since I can't control my spouse, he often doesn't do things the way that I would do them. And it's easy for me to think that if I were him, I would do things differently and things would be better because of it.

I know that is not necessarily true but it feel true. (And we'll never know because who am I kidding... he's never going to do it my way.)

Dr. Mike asked if I was taking care of myself. I told him that I exercise, I go to yoga, I read, I write, I cook, I have friends and truth be told - I come to the chiropractor. And he smiled and said, "Well, let's get at it then."

With a couple tears in my eyes, he led me to my own room where he massaged some of the knots out of my back and straightened me out again, lovingly offering me his hands to lift me back into my life as a caregiver.

I said, "thanks." He said, "you're welcome." And right before I opened the door, he told me about a new wine that he found. We always talk wine - after all, he's practically family.

Starting Over

In yoga I learned that I can start over with every new breath. So, here I go - breathing in and breathing out.

Did you try it too?

I practice breathing... and starting over multiple times each day. It works most of the time on an emotional or intellectual level but in a reality, when I open my eyes or turn back to my life, things look the same.

My name is Beth and my husband has a chronic illness. He was diagnosed with MS almost five years ago. And here's the place where I like to tell folks about all the great stuff in our life because there is so many great things in our life. We have a fabulous family. Two grown boys, each maturing and interacting with the world in a way that any parent would be proud. We have a generous, loving daughter in law. Our lives are unimaginable without her. And this year we became grandparents to truly the most beautiful baby girl.

We live in a huge townhomn; I love to cook and we eat well. We belong to a farm and can enjoy local produce, appreciating the earth. To say we enjoy wine would be an understatement.

I have meaningful work - more on that later. We have amazing friends, that rare combination of people who know us and still enjoy the show.

So, my husband having MS is only a portion of my life and yet anyone dealing with a chronic illness would say that it interacts with every portion of our lives.

Our family worries and cares and watches more closely.
Assistive devices litter our home.
Our cuisine, or at least the amount of wine we drink is altered.
I must balance work more thoughtfully.
When we go out with friends, the where and when is determined by illness.

So amidst the vast amount of life running and giggling through our days, there are daily deaths that we face. And my grief button is pushed over and over again. I breathe in and breathe out, trying to start over again. But when I open my eyes, things look the same. Death is still in front of me.

It's not the "end all" death; it's a mini-death. Folks who live with chronic illness face mini-deaths every day. If you want to learn how to start over, ask them. They're experts.