pounds & persistence

my journey toward fitness and wellness and faith

Archive for the category “MS”

Pounds

So, it’s still POUNDS and persistence around here. Lately I’ve been doing a lot of the persistence- taking my injections routinely, logging time on the elliptical more frequently, slogging through the ever- increasing demands of my job- but I haven’t talked much about pounds. I have good news: I’ve lost a few.

I haven’t really been all too focused on the pounds as I’ve been striving more for a healthy lifestyle, but as a natural byproduct of working out more and eating better, I’ve shed some. My hubby and I were recently talking about my diagnosis and he said that one of his biggest frustrations can be that he doesn’t always feel like I do everything in my power to be as healthy as possible. The doctor said that exercise will strengthen my body and is good for people with MS. And I don’t exercise regularly. The doctor said healthy eating will give me important nutrients and is good for people with MS. And I don’t always eat well. I know it would make my husband feel so much better if he felt I was taking my disease seriously by doing everything in my power to fight it, including a healthier lifestyle. This thought has really resonated with me and inspired some changes.

I think I’d like to set some goals. I’m do much more motivated when I have them- look at what my sister and I did at the bike MS ride this June! Only, I’m not sure what to set or how to achieve them. I feel like I’m on the right path, but need an extra little kick to get my locked and committed. I don’t know yet what that kick will be, but I do know it’s important. It’s important to my hubby and it’s important to my health. At least those factors are much more motivating than numbers on a scale! And the numbers, I hope, will fall as a byproduct of my other motivations.

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Good

I’m pretty good. I’m kind to people. I’m generous. I like kids and dogs and conversations with the elderly. I’m generally patient, with the minor exception of while I drive but, given the metropolitan area in which I live, I think this is pretty understandable. I attend church almost every Sunday and I try to live a “Christian life”. And I’ve done most of these things, been generally this way, since I was a child. Even in my heinous teenage years, I never stepped too far out of line, got too wild or adventurous, did mostly what I thought I was supposed to. And then I got MS. The unjustness of this did not go unnoticed.

When one obeys the rules, takes care to be good and conscientious and whole, one does not expect to end up broken. One does not expect their dreams and expectations for the future to end up crushed. One expects good things to karmically, magically, come back to them. But it didn’t for me. And I can be miffed about that sometimes. And then I read Ephesians 2:1-10 today. In it, Paul says

“1 And you were dead in the trespasses and sins
2 in which you once walked, following the course of this world, following the prince of the power of the air, the spirit that is now at work in the sons of disobedience-
3 among whom we all once lived in the passions of our flesh, carrying out the desires of the body and the mind, and were by nature children of wrath, like the rest of mankind.
4 But God, being rich in mercy, because of the great love with which he loved us,
5 even when we were dead in our trespasses, made us alive together with Christ-by grace you have been saved-
6 and raised us up with him and seated us with him in the heavenly places in Christ Jesus,
7 so that in the coming ages he might show the immeasurable riches of his grace in kindness toward us in Christ Jesus.
8 For by grace you have been saved through faith. And this is not your own doing; it is the gift of God,
9 not a result of works, so that no one may boast.
10 For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.”

I’d heard this verse before, of course, having grown up in the church, but it still surprised me. I mean, basically, this verse tells me that I’m not all that good. I’m not really that impressive. In fact, I’m riddled with sin, even in my best attempt at perfection. So my whole, “I don’t deserve this disease because I’ve been so good for you God” argument doesn’t hold a lot of water.

At the beach this summer, I was beset by horrible thoughts. For no particular reason, with no particular warning, my head swam with the idea that I was given MS as some kind of awful pay back for all the terrible things I’d done, for all the awful ways I had failed God or disobeyed him. And I, the girl with no impressive memory for dates or particulars, recounted in perfect clarity every perfect detail of sins I had committed like a vivid horror film of my own life. And I forgot that there was grace or that God loved me and sunk into self-pity and the unshakable thought of an angry God with a vendetta. This is not accurate either.

This section of Ephesians tells me that God is giving me gifts, like grace and salvation, because I am the work of His hands and he cares deeply for me and how I turn out. It tells me that He has saved me a seat right next to him, that He wants to see me and hang out with me. It tells me that God has great love for me and that He is rich in mercy. And, most exciting, it tells me that he has prepared something for me to do, that my life is not over.

According to Ephesians, God actually wants to use me, all MS’d up even, to do something great in this world. Something that He prepared “beforehand”. Something that, presumably, I needed MS to do. Apparently, God wasn’t impressed with me when I was “whole”, but he delights to use me in my brokenness. God is in the business to making broken people wholly shiny and purposeful for him.

Often we sing songs in church about God the healer and read verses about how God is powerful over everything, even sickness. And it would, undoubtably, be a miracle if He healed me of my disease. But it would be an even greater miracle if he healed my soul, my spirit, of the hurt and anger and disappointment and brokenness that life and disease and hardship and unfair situations bring. If he could take a person who felt all that, a person who feels things strongly and without reservation or apology, a person like me, and heal that spirit and use them for a good purpose… Now that, truly, is a miracle.

In the end, I couldn’t earn the privilege of being used by God by following all the rules. I couldn’t be good enough. But God is in the habit of using broken people to make the story that much more glorious.

Future

We’re on VACAY! It feels long overdue, especially for my wonderful husband, who works too hard and is often too stressed. We’ve been talking about and looking forward to this vacation for a while. It’s going to be peaceful. Restful. Stress free. I even managed to get all the things on my to-do list complete before we left, scrubbing the house from top to bottom and sending my application for graduate school off to be processed.

However, just a few hours after we arrived at the beach, I received an email from the school to which I was applying stating that I had left one or two important pieces of the application out by accident and that I would need to submit these before they could review and consider my application. Well, crap. Already it hadn’t gone as planned. As I dutifully sat down on the first full day of our long anticipated vacation to work on these missing pieces, I began to think about why I was engaged in such a frustrating and, at times, laborious task. The easy answer? For our future.

In my school district, we have been on a salary freeze for several years. Ever since the bottom fell out of the economy, they’ve refused to pay the teachers a penny more. Initially, most teachers just felt lucky to have a job as the unemployment rate was skyrocketing and so many people were losing their houses , their retirement and their financial well-being. But as time has dragged on and the school district has begun to pony up money for everything, including some seriously frivolous and seriously expensive textbook purchases and raises for higher-ups, teachers are once again rumbling with discontent. This lack of pay seems like a lack of importance and teachers can feel that they are not being compensated, or valued, as much as they could be. I know I often do. And the only way to remedy this in the near future seems to be with increasing education. Wanna make more? Get a higher degree. And so, for the safeguard of our future and to help our family be just a little more financial secure, I labor through the grad school application on vacation.

It’s interesting the sacrifices you make for your future. I’m now willing to eat spinach in a breakfast smoothie and trudge away on our new elliptical for an hour, about 55 minutes longer than I’d like to, for my future. I’m willing to forgo an expensive vacation or fancy jewelry, even on a special, gift-worthy occasion, for our future. I’m even willing to take time away from the people I love most to sit in a darkened classroom rehearsing again and again educational principals I’ve heard countless times for my future. We do these things- workout, eat right, get enough sleep, save our pennies, invest in our education- because we hope that they will pay off in the future. But we aren’t promised a future.

The future always seems to hold such possibility. It’s something we love to dream about, fantasize about. When we retire, if we win the lottery, when our kids grow up, when the house is paid off, the car is paid off, the debt is paid down… But life is full of curve balls and these dreams sometimes do not turn into reality. When I was first diagnosed, this is one of the things I felt so keenly. The pain of losing my dreams. The pain of having my future, the future of my fantasies, taken away. The drudgery of contemplating a new future, a dim future, a scary future.

Even now, I am susceptible to this. Last week, my sciatic nerve went all haywire on me and, for a day or two, I had pain just walking, let alone climbing the stairs. I knew the pain. I had felt it before. I knew that it could be caused by the incredible amount of sitting I’d done in the recent summer training’s I’d had, combined with the new, more strenuous exercise I’d been doing. My mother has had the same issue many a time, and it wasn’t foreign to me at all. And yet, my first thought was my MS. I felt weak and useless and scared and I cried as I fell asleep. I felt like constant health issues, pain even, were all that my future held. No matter how ridiculous I knew this was, I couldn’t shake this feeling that my future was not, would not become, what I wanted it to be.

In light of all this, I’ve learned recently more and more how to live in the present. All the planning and plotting and tending to my potential future, or even lack thereof, leaves me exhausted and discouraged. And for what? I can’t control it. I can’t prevent it. I can’t shape it or define it or make it the way I want it to be. I can only be responsible for today, today’s choices, today’s worries, today’s decisions. I can only make the best of what I have now. This is why, in the Bible, Jesus tells us not to worry about tomorrow and to take care of today. In Matthew 6, he says ” Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? … Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

How true is this? Today, in this moment, even on vacation, I have enough to worry about, enough to do. By fretting about the future and all the different “what-if”s, I rob myself of the enjoyment of this day, this moment. It doesn’t add even an hour to my life. My future is in the hands of one much larger than I, much grander and more powerful than I, of one much wiser than I. It certainly isn’t in my hands! And right here, right now, this is what I am responsible for, what I need to make the most of. What I need to do now is focus on the present and not worry about tomorrow.¬†Hopefully, by taking it one day at a time, my future will materialize all on it’s own, and it will be a far better future than I could have even dreamed of.

Celebrity

As many of you may already know, yesterday Jack Osbourne announced that he has recently been diagnosed with Multiple Sclerosis. I wasn’t aware of this, as I rarely follow celebrity news, until a friend told me and then I looked it up. Apparently, just three weeks after his new daughter was born, he noticed some signs that something was off, such as numbness and vision loss. He went in for tests and low and behold, it was MS. He has said in a recent interview that he was shocked, angry, sad… all the things I would expect him to be. Then he says that he decided that this wallowing wasn’t helping, so he was going to have a positive attitude, and learn to adapt and overcome. He also has great hope in the medication he’ll be using and in changes to his diet and exercise routine.

I’ve SO been there, so I could understand these comments and even sympathize. What I couldn’t wrap my mind around, however, was his very public sharing so soon after his diagnosis. I mean, his daughter was just born in late April, which means he’d have noticed his symptoms mid-May and been diagnosed sometime around there. 1 month later, the magazines are printing the article. There’s just no way I’d have been ready to go with something this life changing so fast. And more than that, he’s taking CRITICISM! I mean, if you read any of the websites running the story online, people are commenting after the story and many people are criticizing him or even his family, as if his sordid past or his father’s drug use have anything to do with this disease. People have said that he’s just seeking the spotlight, as if anyone wants to have THIS news to share publicly. People have said that he is touting one course of action, drug therapy, and he should be touting another such as holistic medicine or acupuncture or organic veganism. In the midst of an incredibly difficult and personal time, he is actually facing negativity and anger instead of just support and well-wishes. I can’t possibly imagine how he is doing that or even why!

But as I was talking with the hubby last night, it occurred to me that perhaps, because of his celebrity status, he felt he had to share this information publicly. Maybe to use his status to raise awareness. Maybe to raise funds. Maybe to spur researchers on to a cure. Or maybe, just as likely in my mind, because he figured that the media would eventually find out about it anyway and he wanted to control the flow of that information. Which makes me sad for him.

One of my biggest frustrations during the confusing time of my diagnosis was the prying of other people. I shared the news with select individuals, either because I trusted them and needed an outlet to share or because I felt that our relationship was close enough that they had a right to know. And several times, I was sorely disappointed by the fact that they chose to share this information, MY information, with others. Just last week, I went to visit an old colleague who I was close to and who I have missed and when I shared my diagnosis with him, he was already aware. Not because I’d had an opportunity to share this very personal, very real struggle with him. Because he had already been informed by someone who I thought I could trust. I felt betrayed. I imagine that, at some point, someone would have leaked the information about Jack Osbourne to the media and he would have felt betrayed too.

Why do we feel the need to do this? Why, in our society, are we so consumed with the goings-on in other peoples lives, things which do not concern us, things in which we do not need to meddle, that we compromise their privacy. I have another friend who has been diagnosed with a terminal neurological disease. Most of the mutual friends and acquaintances we have do not know. He co-workers can not know. She will not even share with me the name of this disease. She guards over this with great secrecy, because she’s been burned before. Because her trust has been violated before. Because she’s been betrayed. And I feel sad for her that many times she must have suffered along through things, the emotional toll of this disease, the physical toll, because she was too afraid to share with others who might betray her trust to someone else.

I understand that Jack Osbourne is a celebrity and therefore he must be braver than the rest of us. By releasing this information all at once to everyone in the public, he can’t really be discriminated against in his work place, as I am so afraid I will be. But he can still be pitied in conversation by acquaintances. And he can be judged. And he can be underestimated. And so I admire his bravery in announcing this news publicly, especially so quickly after his diagnosis. But I also think that I, for one, would never, ever want to be a celebrity and have all that scrutiny, that lack of privacy, that invasion of my emotion, placed on me. I guess I’m just too private a person.

We Did It!!

I know it could sound haughty and arrogant and self-centered, but I’ve got to say that I am so freaking PROUD of myself. And Anna. And, of course, my mom and dad and even sisters Tessa and Brie, but mostly Anna and I. We did it. We completed 30 miles. We really weren’t sure we could.

Friday afternoon, the afternoon before the race, Anna and I had agreed that we would meet at my house early to try to beat some of the traffic going over the Chesapeake Bay bridge. No matter how early we left, however, we were destined to sit a spell in bumper to bumper misery simply because the Chesapeake Bay bridge is the primary route to Ocean City and to all other ocean front towns. And because it was the last day of school for Anne Arundel County students, so many families would be celebrating. And because that last day of school was a half day. I ¬†too felt like celebrating, as summer is just as much a welcome break for the teachers as it is the students, and my celebration apparently would be to complete a 30 mile bike ride. I was beginning to think that my mother HAD really started to rub off on me…

The drive was long but lovely and we kept each other company the whole way. We checked into our enormous hotel room and promptly took a short nap. Anna and I awoke to our parents knocking on our hotel room door, prodding us to the race registration check-in and dinner. They were excited and animated and, even here on the Easter Shore at a bike race they’d never participated in, knew some fellow cyclist. As Anna and I exchanged knowing glances, they introduced us to RUNNING friends that were now also CYCLING friends who we just HAD to meet. Figures. At the race registration, however, we discovered that, because of the generosity of my family, I had raised $1000 and now qualified for a “Top Crab” jersey, which I would get to wear throughout the race. I was just hoping to raise enough money to meet the $300 minimum for entry and not have to pony up any of my own funds to cover the difference, so this was unexpected and very special. I was getting pumped.

After an upbeat, fun dinner with Mom and Dad, Anna and I headed back to our hotel to wait for Brie and Tessa to arrive. When I called Tessa months prior to the race and asked her if she’d like to pedal it with me, she tactfully replied that she wouldn’t be able to carve out the time for training leading up to the race because of her other obligations and, therefore, she would definitely not be participating IN the race. But neither hell nor high water can keep Tessa away from any event where all her other sisters are assembled, so she registered as a volunteer, left the babies with her hubby and trekked to the Eastern Shore. When I first mentioned the race and the idea of volunteering to Brie, she didn’t even hesitate. She immediately registered as a volunteer and began contacting the appropriate people to make sure that both she and Tessa could be stationed at the same rest stop. They showed up, wine in hand, after a full day of work and a long drive out the Chestertown, MD, ready to volunteer their hearts out.

The morning of the race, Anna and I were nervous. The race organizers had provided all meals for registered participants and volunteers, and so we would be eating in the cafeteria with the other would-be racers. Neither Anna nor I had ever wished so fervently that we had only volunteered for something, not actually participated in it. I managed to choke down my eggs over the butterflies in my stomach while Dad cracked jokes and made conversation and Mom sorted out last minute details, like where the start line was and what time they actually had to begin the race. Since they were participating in the Metric Century ride, a 62/63 miler as it were, they would start before us and, after some serious prodding on Mom’s part, they headed off in the direction of the start line. Tessa and Brie returned to inform us that they had to ship out to their assigned rest stop, but they wished us well and assured us that we would see them as soon as we could managed to pedal to their stop, hopefully still upright and coherent. Anna and I were alone and a little apprehensive. We were freaking out. We got our bikes, checked the tires, added air, adjusted a chain that had partially come off, all of which made us feel tough, but did not calm our nerves. At 9:00, we set off from the start line.

The first 5 1/2 miles we had to cover before we reached Brie and Tessa and their promised rest stop were largely very flat and not that difficult. It took a few miles to readjust to being on a bike again, and our rears complained during that entire adjustment period, but by the time we pulled into Kent County High School, we were feeling ok. We spent just a few minutes chatting with Brie and Tessa, or rather, guzzling water while they talked to us, and then were off again. Shortly after we left their encouraging smiles, however, we discovered the hills.

We weren’t expecting hills. We had been told, by our mother no less, the woman whose brain child this whole adventure was, that this course was flat. In fact, I distinctly remember that as a selling feature when she was pitching this idea of a 30 mile bike ride to me. And there they were anyway- hills. On the second hill, Anna informed me that we were walking to the top. I dutifully hopped off my bike- there would be no leaving one man behind. We guzzled our gatorade and pushed on, hill after hill. We walked just one more hill and seriously considered turning around, right there at whatever mile we were at, and starting back for the finish line, when we ran into an encouraging cyclist who assured us that the half-way point, and therefore rest stop, was only 1/2 a mile further. We trudged on. “1/2 a mile” might have been a slight exaggeration on the part of the cyclist, but she was well-meaning and we pulled into the second rest stop exhausted and discouraged. And heard someone calling our names.

As we feebly dismounted onto shaky legs, our mother, beacon of all fitness, called excitedly over to us, all smiles and enthusiasm. I could have strangled her with her helmet strap. She looked so happy and not nearly as drained as we were, despite having completed over 30 miles already that morning. Our father was no better, all chatty and positive. For them, this seemed to actually be FUN. All Anna and I wanted to do was find some shade to curl up and give up. But they brought us lunch, complete with SANDWICHES and COOKIES and SODA! After 30 minutes and the best sandwich of my life, Anna and I felt like new women ourselves and understood our parents buoyed spirits. We even enjoyed seeing them and hugged them before they headed out on their final half of the race.

The next 7 miles were hard- the day was so damn hot!- but not impossible and we learned to master the art of removing the water bottle while pedaling, drinking, and then replacing the water bottle while gliding. We felt accomplished. We pulled into the rest stop at mile 22 happy to see that it was the same rest stop as earlier and that we would see Brie and Tessa again. In fact, they took care of us from the moment they saw us, helping us off our bikes, getting us drinks in the shade, filling our water bottles and even taking our bikes over the mechanic at the stop for more air and a thorough once over. They did not, however, cave to my plea that they stuff us and the bikes in the back of Brie’s Ford Fiesta and take us to the finish line. As we climbed on our bikes for the final miles, however, we felt remarkably better.

At 1:00 on the nose, we pedaled across the finish line. Even with our long breaks at the rest stops, we were able to finish in 4 hours, which was much better than we thought we’d do. As we pedaled the final leg of the race, Anna even began planning for next year, began talking about how much fun it’d been and how nice everyone was. As if on cue, some of the more experienced, better cyclist came along side us and began chatting with us, keeping us company for a few of the final miles. There was music and medals and sandwiches and Rita’s mango italian ice in the shade.

Two by two, the rest of our family began to show up and assemble, relaying their accounts of the day. Tessa and Brie had great stories and a little bit of sunburn from the rest stop; Mom and Dad had great fun and photos from their ride; Anna and I had a huge sense of pride and accomplishment and a gratefulness that we had survived. But we also realized that we had all enjoyed ourselves. We realized that we had all gotten something positive from the experience. We realized that this was the first time just the 6 original Foster Family had been away together since before Anna’s engagement 6 years ago. And we realized that we would do it again, may even ask for donations again, next year. Prepare yourself now, we may come a knockin’!

Ready for the Race

"Top Crab" jersey

Best Volunteers EVER!

All the "Fierce Foster" team

Faith & Fairy Tales

I was driving down the road the other day and I heard a new song by Maroon 5. The lead singer is Adam Levine, a judge on The Voice, and so the band is getting a lot of airtime. The song is catchy as all get out, but the thing that really stood out to me were these lines, “if happy ever afters did exist, I would still be holding you like this, all those fairy tales are full of s#@%.” Oh Adam, I know how you feel.

Life rarely turns out the way we plan. It rarely turns out the way we think it should. As a Christian, I’ve heard often and emphatically that God is in control of everything, even my life, but I’ve usually tended to file that away in the “yeah, that’s nice” category. I mean, of course God is in control of the big stuff, the fate of nations and natural disasters and historic events. He’s definitely in charge of keeping the earth rotating and the universe humming and all that. He’s probably in control of who wins the lottery, even. But, let’s be honest, I’M the one in control of MY life. Or at least I should be. God can be in control of everything else.

Oddly enough, though, that’s not really the way the idea of CONTROL works. You either have it or you don’t. And God does, or so I was taught to believe. And he’s really not taking suggestions. Which is a shame because, when it comes to my life, I’ve got a long list of them.

The thing is, I don’t necessarily want a “fairy tale” life. I just want life the way I want it. And the part that usually pains me, the part where I usually struggle, is when it doesn’t go that way. And the last few months have been textbook NOT going that way.

I, like the rest of the world, tend to fall into some kind of belief that, if God really is in control, and I do the things God is generally supposed to be in favor of, like being kind to others or not cheating on my taxes or not strangling that smart-alec kid in second period, God will repay this with a life that is pretty much how I want it to be. And, of course, if you do the things God doesn’t want people doing, say cheating on your spouse or treating other people like crap, life isn’t going to be so hot for you. So when I first got the phone call from my primary care doc and she broke the news of my results, I remember feeling cheated. Feeling tricked. Telling my hubby in a moment of rage that God didn’t make any sense at all because I, the humble, perfect person that I am, had spent my whole life trying to live reasonably responsibly and mostly by the rules, being pretty nice and all golden rule-ish, while a co-worker of mine, who is generally disliked, is rotten to people and stole another woman’s husband but SHE get’s to have two beautiful children and a postcard life while I get MS and very likely will never have a baby. And God is in control? The same one who made these rules we’re playing by? Clearly, God needed my suggestions on how to run things.

But oh, the things I’ve learned in a few short months. Things I could have never described to you beforehand. Things that may not even make sense to you now, unless you know them to be true yourself. Things that could sound ridiculous. Things that I KNOW to be true. And the first of these is that God is good.

What God does may not always FEEL good, but He is good. Odd, huh? I’d be hard pressed to explain how I know this in intimate detail, but I surely do. In awful moments, when my life spread out before me and looked to me like a wasteland, where I was scared and overwhelmed and felt alone, I clung to this. I repeated it again and again. God is good. I know this is true. This situation sucks and it feels like a cross I can’t bear, shouldn’t even have to bear. And God is good. I have to stick myself every day with a needle just to stay healthy. And I hate needles. And there is no guarantee I’ll stay well. And God is good. I may one day lose the ability to work at my job. I may one day lose the ability to walk. I may lose other valuable things, memories, motor skills. And God is good. It goes like this again and again. Every dark situation, every horrible “what if” and yet, God is good.

Better yet, God loves me. This part is a stumper because, honestly, I can think of at least half a dozen pretty big reasons right off the bat why He shouldn’t. I can think of things I’ve done, things I never talk about doing because the weight is too great. There have even been moments where I wondered if I didn’t get MS as a big payback for all my mistakes along the way. Like maybe MS was the price I was going to pay for the sins of my youth. A lot of moments. But I know this is NOT true because God loves me. And I know Christians always point to the cross as the ultimate evidence that God loves us, but that all seems so abstract to me, so distant. Yet, somehow, here and now, in the concrete day to day or living with a disease that can’t be cured and knowing that some of my dreams may be sacrificed because of it, I am confident that God loves me. And that makes his goodness personal.

All that is honkey-dorey and peachy keen but pretty insignificant though if God is not in control. I mean, it’s great that he’s good and that he loves me, but if he’s not powerful then it just makes him more like a super-duper cheerleader than the Lord of the universe. It just makes him the nicest of the nice, but not really God. Ultimately though, this experience has made me believe that he is in control. He knows what he is doing. He isn’t looking for a suggestion box full of my good ideas because he’s got it covered, he’s got a plan, and he’s powerful enough to put his plans into action. He isn’t ignoring me, because he loves me and he’s good. He isn’t letting this happen to me because he isn’t powerful enough to stop it. He is in control.

And that means that this disease I can’t cure IS an example of Him loving me. And his goodness. And his power. He didn’t give me MS in spite of his love for me, he gave it to me BECAUSE of his love for me. Somehow, in all of this, my disease is the highest good for me, for my husband, for my family and my friends and my church. Somehow it is intimately tied to his plan for my life, to the things that I will accomplish on my time on earth. I know I sound a lot like Voltaire’s Pangloss and that my impossible stumping of “the best of all possible worlds” must sound a little like desperation to some. How can I say this? How could I claim that this disease is actually ON PURPOSE? Because I know this God that is good and loving and in control. I know him better now than I did 6 months ago, when I was diagnosed. Than I did a year ago, before I could ever dream of any of this. I know he began preparing me, my heart, for this before I was diagnosed. I know he will use this to accomplish something very different than the plan I had laid out, but somehow better.

That doesn’t mean that there still aren’t tearful times. Three weeks ago I broke into tears in the arms of close friend at work, just minutes before my students came filing in asking if I was OK. A week or two before that I had one of those evenings where everything is so bad, so rotten, no-good, terribly awfully bad, that the only cure was a pint of ice cream for dinner and early to bed. OK, I’ve had more than one of those. But each morning, I awake with new strength, new grace to face the day. The book of Lamentations isn’t kidding when it says “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.” In my mind, it’s easy to think that “happy ever after” looks one way, one specific way that I have laid out. That in order for my life to be “fairy tale” perfect, it should just so. But the reality is that God knows the desires of my heart, he knows EXACTLY what I want. He also knows what is best for me. And he is powerful enough to do any of it, all of it. I won’t have a child or not have a child because of the situations that I’m in, but because God, who loves me and is good, made it so. I won’t walk or not walk, work or not work, be healthy or not healthy, because of the things I do or don’t do. It will be because God, who loves me and is good, made it so. Of course, I still need to be responsible, show up to doctors visits, take my inconvenient medicine, exercise, eat right, rest, take my vitamins… but ultimately, the God who loves me and is good is in control of my future. I might not know what that future is, it might not look like a fairy tale to me, but I am confident that it is for my good because I believe him.

The song that I’m loving the most right now, that I’ve got on repeat in the car every chance I get, is “He Loves Us” by the David Crowder Band. Overall, awesome lyrics, but the part the really hits me, that I can really relate to are the lines “He loves like a hurricane, I am a tree, bending beneath the weight of his wind and mercy. When all of a sudden, I am unaware of these afflictions eclipsed by glory, and I realize just how beautiful You are, and how great Your affections are for me.” At the end of the day, I guess I would rather dwell in the truth of that than focus on the fairy tales.

Privacy

Weight: 246.2 lb

Funny thing about me- the girl who puts her weight on the internet, the girl who shares her whole life story with strangers, the girl who will overshare personal details at the slightest interest or provocation- a funny thing you might not naturally know or assume is that I can, actually, be a fairly private person. No, really.

If you know me, even a little, this seems a bit contradictory, or at best odd. As I’ve mentioned, I have a habit of publicizing things plenty of ordinary folk would not. I overshare. I’m overly candid. I’m a bit of an open book. But then there are some things I don’t talk about, some things I’ve learned NOT to discuss. When I was younger, this was my struggle with depression or isolation or other teenage angst-y things. They were unpopular subjects that usually brought on a wave of (unwanted) concern and (unsolicited) advice and at times (unwelcome) instructions, demands even, for how to handle my emotions or my relationships or some other area of my life. If I’m nothing else, I’m unrelentingly independent and probably overly proud and I wanted to handle my emotions myself, process them myself, before I allowed someone else to interpret them for me. I knew that there was help that others were more than happy to provide and that life, at times, did not have to be as difficult or as painful as I was making it, but I felt the need to “tough it out.” I really didn’t trust others to see me in a different light, a more honest light even, and still love me the same and I somehow felt that revealing all my thoughts and feelings and weaknesses to others would taint there view of me.

Oddly enough, I reacted to my MS diagnosis much the same way. When I first got the news, I shared it with one sister, who did what any good sister would do and at first tried to be plucky and positive (Oh, no, it can’t be that… well, even if it is, you’ll beat it…) and then, giving in to my desire, just cried with me in the way that only your sister can. It felt so good to share with her; I felt like she “got” me. Then on to my other phone calls- my other sisters, my parents. As there is in any family, there was some drama involved with the sharing of this news. I didn’t call my in-laws, leaving that to my husband, and he didn’t want them to talk to me about it initially, wanted them to respect my privacy, wanted time for me to process the news and so my diagnosis became this awkward “elephant in the room” scenario. Some of my family members wanted to share with individuals in their church, people that they had developed relationships with for over 20 years, people that had, at different points in my life, been instrumental to my development and I wouldn’t let them. My overly fierce privacy reared it’s head again.

I was selective in who I wanted the information to go to- my pastor and his wife can know I have MS, but the church elders can’t. My friend and department chair can know my diagnosis, but my co-workers can’t. My immediate family can know, my extended family can’t. I knew that people were concerned, that they loved me, that they wanted to help, but I also felt like a topic of gossip. Sharing my diagnosis as a “prayer request” felt like christian code for “tell everyone this sad and shocking news so they can pay attention to you in a way they never were before.” I remember distinctly telling my mom that unless my family had been asking for prayer for me as I was planning Prom last year or sending up praise reports about the bonus we got when my school met AYP, I didn’t see why they’d only share this information now. It felt as if my MS was going to be the defining thing about me now, I was going to be “MS girl”, I was going to be the story everyone told to someone else when they got a bad medical diagnosis. I was terrified that it would change the way people viewed me. And so I stayed quiet. But news of my diagnosis didn’t stay quiet.

I suspected that my principal knew when he kept popping by my room to give encouraging little pep-phrases and stopping me briefly in the halls to ask how I was doing, how I was feeling. Shortly after this, I found out that my department knew. Someone had apparently mentioned MS as one possible diagnosis in the lunch room and then word of the confirmation eked out though I still don’t know how. What could I do? I can’t control MS any more than I can control who knows I have it, so I need to get used to this helpless feeling. But every time there’s a reminder of this, it still irks me a bit.

I know that I am going to have to get over this. I will have this disease for the rest of my life. Talking about it here is the first step I’ve taken to any kind of public acknowledgement and probably toward acceptance (Well, that and my daily shot. You can’t help but acknowledge that you have MS when you stick yourself with medicine everyday). I will have to tell my grandparents and my aunts and uncles and I should do that soon. But I still dread it. I still dread becoming “MS girl” and letting a disease I have no control over become the label I wear. I’m afraid that my grandparents, whose memories are failing, will only remember this fact about me. I’m afraid I will be reduced to this illness because bad news sticks so much more readily than good news. And that’s a problem I haven’t solved yet. Instead, I’ve just become overly private as I try to sort out a solution.

It’s Time

Weight: Who cares?

It’s time for me to break my silence. It’s time for me to ‘fess up to where I’ve been, what I’ve been up to, what’s been going on. It’s not that I’ve been purposely absent, at least not initially. It’s just that I was overwhelmed and then overwrought and then just over it all. Let me clarify…

Initially, I was just busy. I was going to my Weight Watcher meetings, which I had so carefully chronicled for your reading pleasure here, and making it to the gym, albeit still only occasionally, and working my behind off in the classroom, so I was busy. Things were good. And then, just a short time after my last post, two months or so, things changed.

I was teaching class one nondescript Wednesday morning when I had a strange burning sensation in the right side of my face. My students assured me that, no, my face wasn’t swelling or bright red or in any way abnormal looking, and I carried on with class. But then I noticed that my handwriting was a bit off. Not in a distinctly discernible way, but in a subtle way that one would only notice when one signed one’s name hundreds of times a day on bathroom passes and sick notes and grade sheet home to parents. My typical signature was just a bit sloppy. And then there was the general flu-like feeling that began complete with neusea. And the foggy brain feeling. And the extreme fatigue. And then the tingling. Over my entire left side of my body, a strange pins-and-needles, foot-fell-asleep-because-I’ve-sat-crosslegged-too-long-and-now-it’s-waking-back-up feeling. Odd.

After first period, I went to see the school nurse. We concluded that I must have eaten something slightly different from the usual and that I must be having an allergic reaction. She instructed me to go get Benadryl, which I did and which I took before third period. By fourth period, my unusual symptoms combined with the Benadryl to produce a practically drunk teacher who sluggishly navigated through her class. The class was worried, and so was I. But by Friday, all my symptoms had disappeared save one- the numbness. I assumed I was over my initial allergic reaction but wondered why I might still have this weird lingering issue. I went to see the nurse.

I explained that I was feeling much better, but that I still had this lingering pins-and-needles sensation from the top of my head to the tip of my toes. I could function perfectly fine, I could still drive my car, which has a manual transmission, without problem, but shaving my legs was the most bizarre experience since half of my body felt like it was numb. I wondered if there was anything she could give me so I could regain feeling and teach third period? She sent me to the Urgent Care facility immediately instead.

I insisted my husband not leave work and join me, which he wanted to do and which I was sure was ridiculous, and instead waited as they ran test after test only to send me home 2.5 hours later with no idea what was wrong with me and a prescription for steroids, which I never had filled. I saw my primary care physician on Monday, who again had more questions than answers and again ordered more tests. I had a LOT of blood drawn and eventually, an MRI. Then, just before Thanksgiving, my doctor called to tell me that she was sending me to a neurologist- I had lesions in my brain which were indicative of Multiple Sclerosis. I cried for hours that day.

Over the next few months, I met the neurologist, I succumbed to a spinal tap and I discussed my prognosis when, not if, my diagnosis was confirmed as MS. I tried to stay upbeat. I tried to make jokes. My sister told me that I had a dark sense of humor and it really wasn’t funny to anyone around me when I made remarks about wheelchairs and handicap parking spots. The neurologist said that a positive outlook was essential to success with MS, so my husband was consistently Captain Positive and could not abide depressed or depressing remarks I made. I tried not to cry when other people were around. I tried not to ask the question that my neurologist said so many MS patients ask “Why did this happen? How could this happen?” My neurologist was clear that this was a waste of time and only lead to self-pity, which made MS worse I guess. But in my mind, how much worse could it get than being diagnosed with a degenerative disease for which there is no cure which, more than likely, at some point would claim my mobility or my intelligence or my independence or all of the above.

In January we got the spinal tap results back. I have MS. I started to cry a little. My husband felt relived. He was afraid that it would be a brain tumor or, worse, something they could not diagnose and more tests would have to be run and more doctors would have to be seen. He eagerly asked about which drug regimen I would begin injecting, as he had done hours of research on these already, pretty much from the moment we were told it was likely MS. We listened studiously as the nurse explained that my insurance would only cover the daily injectable drug and that I would have to shoot myself every day with a needle in the hopes that the drug would allow me to live a pretty normal life and that I would not be disabled too much in the long run.

The nurse came to our house the day before Valentine’s Day. She would train me to inject myself. She was warm and upbeat and positive- my neurologist would have loved her. She made the process of sticking a needle as smooth and fun as possible, but my hands still shook as I practiced again and again and again. I made my husband practice too, even though his hands didn’t shake and he had absorbed everything she said perfectly, executed her instructions precisely. She repeated again that life would be ok, that I should be upbeat, that our lives would be perfectly normal. Other than the disease that has no cure. Other than the daily shots. Other than…

The response from people varied. Of the few I told, most didn’t know what to say. I most appreciated those who admitted that they didn’t and the one or two who just cried with me. Some told me to stay strong and talked about how positive and determined and strong-willed I was and how they were sure I’d beat it. Others seems depressed and very worried and talked about preventative measures like driving an automatic transmission instead of my manual one and moving to a house without steps instead of the three-level rowhouse we own. Everyone, it seemed, knew someone who had MS and either wanted me to get in touch with them for advice or wanted me to take hope from their story. One well-meaning person told my husband that they had read about how hard MS was on a relationship- I suppose the intended effect was to prepare him and sympathize with him but it just made me feel guilty and miserable, like I was bringing the black plague on our relationship.

I was overwhelmed with emotion and felt a lack of outlet to express them. I tried very hard not to cry and certainly not to show it to anyone else. I got most of my crying done between 3:30 and dinner time, since I knew my husband wouldn’t see. I tried to be proactive. The neurologist had said that exercise can have a dramatic impact on wellness with MS, so I went for long walks or jogs and I’ve taken up Yoga, which I discovered I love. I gave up red meat. I started taking multi-vitamins with my shots.

One afternoon, I was talking with a friend who recently revealed to me that she too had been diagnosed with an auto-immune disease for which there is no cure. Only her disease is terminal and will, eventually, kill her, even though she’s outlived all the prognosis’s initially given to her. And I knew, when talking to her, that in the world of auto-immune diseases, I’m lucky. Even in the world of Multiple Sclerosis, I’m lucky. I have relapsing-remitting and I’ve only had 2 attacks. I only have 2 brain lesions. Because of my clear symptoms, they caught this early. I have medicine which I can take every day and will help manage the disease so it doesn’t get worse. I have information about diet and exercise at my disposal so I can feel better and keep my symptoms at bay. This disease will only shorten my life span by a slim margin, if at all, and most of it can be pretty darn normal. But even though I knew, I still know, that I am lucky, I started to cry. Because it seemed so unfair. Because I planned out a different life. Because, until 6 months ago, my biggest struggle was if my husband and I would be able to agree on having a child. Because having a child now seemed like a ridiculous, far fetched idea. Because so many of the dreams I planned out for myself could now become a ridiculous, far fetched idea. And I know we aren’t promised an easy life. I know we aren’t promised anything. But we kinda do think we’re promised things and we’re pretty damn pissed sometimes when it doesn’t turn out like we thought.

I live just outside Baltimore and whenever I’m in the city, I’m always struck by how one moment you can be driving through a block of million dollar rowhomes, impressed by the neighborhood, and the next you can pass a block of abandoned drug houses, trying not to make eye contact with the junkies. I told this friend that, for me, dealing with my diagnosis has been like driving through Baltimore- block by block. One day, I’m ok. It’s not that big of a deal. I’m even a little peeved if people bring it up because I don’t really want to deal with it, dwell on it, have it define me. The next day, I’m thoroughly depressed because of it and all I can think about is my diagnosis and all the what-if’s that might keep me from what I perceive as a good life. Block by block. One day, I’m full of faith and positive outlook. I truly believe God is working for my good and therefore, even if I can’t have a child or maybe even walk, I’ll still have a rewarding life of service in any number of other ways I imagine. The next day, I’m crushed because one day, I might not even be able to WALK let alone have a child and I feel like God’s definition of my good really sucks and it’s all I can do to drag myself to a yoga class let alone serve the world in some profound way. Block by block.

This is one of those times in my life when I have to remind myself regularly that my emotions are just that-emotions- and not necessarily reality. This is one of those times in my life when it benefits me to remind myself of all I’m grateful for. This is one of those times in my life where, emotionally, I have to crawl before I’ll walk or even run and sometimes that crawling is painful. This is just one of those big deal times. But I’m pushing on. This morning, I research nutritionists. Later, I’m going to a yoga class. I weighed myself this morning and my weight has not changed dramatically since September, which is somewhat miraculous since it’s been the very last thing on my long list of things to care about lately. Last week, I was at the beach on spring break getting golden and relaxing and next week kicks off the last 9 weeks of the school year. I’m participating in a 30 mile Bike MS ride in June with my parents and sister. The hubby and I are trying to decide where to celebrate our 5 year anniversary this fall and the last 6 months have brought us closer, not further apart. Life is slowly returning to a new kind of normal. It’s not easy, and it’s not pain free, but I do have confidence that in the end it will be good.

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