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the other side of the coin
I tend to find time to share my thoughts when I’m feeling good, and positive and strong. I’m feeling none of those things today, but in an effort to share my MS journey, I thought it would be fair to share a day like today.
Last night was my third injection and while in certain ways it’s getting … well, easier? … the dosage is also getting larger, and therefore, unlucky for me, the side effects are getting stronger.
Today I’m tired, and discouraged … and oddly, overwhelmingly sad. Anyone who has struggled with depression will understand the feeling of … well, almost helplessness in controlling your own emotions. Every part of my body hurts ~ like the pain of a good workout, but not good … like the flu has invaded every muscle, every joint … every sensitive nerve ending in my skin. I’m hot, I’m cold, my jaw aches, my head aches, my eyes burn.
It has taken incredible effort to do normal, everyday things. Getting up, making smoothies, taking Lucy out … showering, dressing. All of it feels earth-shatteringly difficult and tiring.
That’s the thing ~ the exhaustion is all-consuming. Even with proper sleep, and diet and exercise … I am constantly in a state of nearly debilitating fatigue. It’s enough to make a person depressed even without all the other fun elements of MS.
So that’s today for you.
a little thought
“…feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we’re holding back. They teach us to perk up and lean in when we feel we’d rather collapse and back away. They’re like messengers that show us, with terrifying clarity, exactly where we’re stuck. This very moment is the perfect teacher, and, lucky for us, it’s with us wherever we are.”
― Pema Chödrön (** bold is my choice ~ I love the image of leaning in)
Just a little share today ~ Marissa (my amazing yoga teacher) read two quotes from Pema during class yesterday and they really stuck with me. Unfortunately, my copy of the book won’t arrive for a few days, so I chose the quote above to share. I will say that researching Ms. Chodron made me aware of how wise her words are. I’m looking forward to further exploring her ideas when my copy of “The Pocket Pema Chodron” arrives.
Until then, here it is again ~ the idea of the strength of language.
I like it.
a new life
I’ve had this little seed of a thought in my mind for the past few days … and I’ve been working to figure out the essence of it, because while I understood what I wanted to share, I wasn’t sure how to do it.
I”m not sure I know now, either, but I figured I was ready to try.
Yesterday on Live with Kelly & Michael they honored one of their “Unstoppable Mom” finalists. I had to stop and watch because the woman is from the town in which my parents now live. Just watching her daily life made me feel both tired and super lazy. By the end, I had goosebumps and tears in my eyes. People are amazing, everywhere, and so often their incredible-ness is known only to those in their immediate circle. I was inspired by the life that woman leads, and it made my accomplishments and obstacles feel small in comparison.
And then I took a step back, and told myself to stop being such a downer. Yes, her life is inspiring, and I am so glad I was able to witness it, albeit briefly, but I decided I wasn’t going to allow myself to diminish the journey I’ve been on these past few months. (Although I know for a fact that if I woke up daily at 4.30a and went to bed at midnight I would be a very cranky person ~ sleep is my friend, and in a lot of ways, my savior). Everyone walks in their own moccasins, and everyone’s path is both challenging and rewarding on epic levels for each individual. That’s the truth. Comparisons are silly and not constructive or helpful in any way.
I’d always been that person who wanted to be healthy, active and a contributor to society. But even though I admired those people focused on recycling and the environment, clean eating and soulful exercise, etc, I never seemed to find the motivation within myself to sustain that type of lifestyle. Last July, when I sat down with my nutritionist/friend to discuss health options for people with MS, I felt myself tense up and dig in my heels in utter resistance. I had a million excuses … and I felt they were all very stong, very valid points.
And yet, here I sit with my green smoothie, my yoga bag tucked in the corner of my office ready for class tonight, and the man and I have converted our kitchen from a den of delicious comfort food to a veritable vegetable patch and whole foods haven. And even weirder ~ I crave veggies. I don’t feel okay unless I’ve loaded up with all kinds during pretty much every meal, every day. I like them blended, stuffed, grilled, dunked in hummus, chopped … you name it. And listen, I never even imagined it would be possible, let alone a reality. It’s amazing what a person can accomplish with a little motivation.
We started small, because I was pretty averse to all the changes that my nutritionist said were necessary. And I will admit that while we’ve cut back on our dairy intake, I probably won’t ever give it up completely. No matter what evil pieces of information come my way to encourage it. As I type this, I’m salivating thinking of the stuffed pepper I have in the fridge for lunch. The man did dinner last night, because I was at the office until nearly seven (gasp!) and it was soooo good. Even better, he made enough for lunch today, which was smart, because having anything else with that memory on my taste buds would have been disappointing.
So all these thoughts have been floating in my mind and I also realized that we are nearly halfway through March (a month that, historically, is not my friend) and I’m not feeling like I normally do ~ lethargic, sad, disinterested in life … overwhelmingly apathetic. And it has made me consider one of my favorite quotes (which hung on my mother’s beside wall in most of our homes through the years) ~
Change your thoughts and you will change your world.
I haven’t just changed my thoughts ~ but in this new year, I have focused very hard on staying strong and upbeat and positive about all that life has thrown my way. It doesn’t help anyone to cry woefully about one’s lot in life ~ it’s better to get up, dust oneself off, and get on with things (which as I type sounds so British in my head). I’m not sure if it’s the new diet, the cleaner living, the dedication to exercise, the lack of alcohol (a known depressant) or my concerted effort to stay positive, but I do definitely feel different. I have spent large chunks of my life battling what I’ve always referred to as ‘the darkness’ and right now, it feels very far away. Even though things are tough, and unknown and scary things seem to be around every corner, and one of the largest side effects of my new medicine is depression. So in a way, I’m walking proof of the power of the mind.
In so many ways, big and small, 2013 has been the start of a new life for the man and I. Yes, we will be making it legal in June (!!), but it’s so much more than that. I think back to four and half years ago and am amazed at how far we’ve come together ~ the accomplishments, the lessons learned, the chances taken. I think I’m a pretty tough chick, but he is my partner in every sense of the word, and when I’ve been weak, he’s been strong. I couldn’t and wouldn’t be where I am without his support and teamwork. I feel so incredibly blessed for all that I have in terms of family and friendship. I think that has helped buoy me through all this craziness as well. I won’t allow myself to be beaten. (I’m a little bit competitive … and that may or may not be an understatement!).
So now that I’ve waxed lyrical for a while, I’ll close out with this ~ it’s a much more beautiful world when you’re smiling all the time. Even if you’re faking it, eventually you might even fool yourself.
strong women
Yesterday I was at my doctor’s office for a small procedure, and instead of seeing the person I normally see, I saw the head doctor, who also happens to be one of my mother’s old and dear friends. (Which would also explain why I have been driving to Wyomissing to see her and her staff since I was sixteen, no matter where I was living ~ clearly still the case, as I drive from Philadelphia now and have not once considered changing doctors).
Whenever I end up seeing my mother’s friends I am almost instantly transported back to our first kitchen in Reading, with white blue and pink flowered wallpaper and all the women from her club ~ the Berks Women’s Network ~ gathered around the table coallating the pink pages of their newsletters. At the time, I am one hundred percent certain that I had no idea the significance of this to me, and how it would help shape my ideals, my morals, my world view.
I have to take a step back, and say that my mother is the strongest, smartest, most resilient, incredible, charming, capable woman I have ever met. Or, I truly believe, ever will meet. She has faced down lions and demons in her life, and she always manages to emerge on the other side completely unphased, totally together, classy and composed. I’m sure she has had dark times ~ she’s human, and no one could have emerged from the hells she’s walked through unchanged. But she does it with such style, such self-possession. I am absolutely certain that if I am ever half the woman my mother is, that will be quite an accomplishment.
We moved a lot as I grew up and I am sure that took a toll on my mum ~ always having to uproot, change jobs, meet new friends. When I was about five, we moved to Reading for th first time, Jennie J moved in with us, and my mother went back to work. She’d done stay-at-home-motherhood and it just wasn’t her thing. Luckily (in some ways) my grandmother was able to move in with us. In a lot of ways, she was our (Dave & my) second mother.
I was young when all this happened, so my memories are hazy, but I remember going shopping with my mum for new work clothes ~ I remember some of the women from the Berks Women’s Network ~ I remember when my mother was given the opportunity to head up the at-the-time revolutionary Women’s Center at the Reading Hospital and Medical Center. I remember her office, too, and the waiting room with its dark plexiglass playhouse and the educational rooms with fake breasts to help women feel what breast cancer tumors would be like. I remember my mother’s boss, Jeannette, who was in so many ways a hero to me, and, I believe, a hero to my mother. Jeannette gave my mother that opportunity at the Women’s Center, and since then, my mum has never looked back. She has had a very successful career in spite of the relocations and all the obstacles associated with them.
The women from those days stayed in my mother’s life even as we moved to New Jersey, and then to Pittsburgh. And then, just after I turned sixteen, we headed back to Reading. Things had changed ~ obviously. Everything does with time. It was the nineties then, not the eighties, and women’s place in the workforce was evolving. Back in the early days (as I remember it) I was surrounded by strong professional women, but I really had no idea how hard they had worked to get there. Jeannette had been the President of the Reading Hospital — the first female president ever. And she’d made huge personal sacrifices to achieve her success. I didn’t understand that when I was five, and I could only partially grasp it when I was sixteen. But I fully appreciate it now.
I mention her because she died a few years ago, and when I found out, it felt as though my heart had been ripped from my body. I hadn’t realized it until she was no longer around to tell, but she had been my role model, a woman who believed in helping other women, in promoting the careers of women in a positive way and being a strong example of a professional woman. When she’d had her first and only child – a daughter- at the age of forty (I believe), she’d said with confidence that her baby girl would be the first female President of the United States. I still remember things about her with crystal clarity, and I wish I could have told her what she meant to me.
Jeannette was just one of the women I was exposed to at a young age ~a tender, impressionable age ~ and they all left their mark. A doctor, a business entrepreneur, a hospital President …. I never knew any other world than the world my mother showed me, with strong, smart, independent, savvy women. I know now that not all women are built like that ~ not all small girls are given the gift of those magnificent role models. As I chatted with my doctor yesterday, all my memories came rushing back, and I suddenly understood the significance of the kind of mother my mother chose to be, and how she chose to raise me. I believe it must be a huge and terrifying burden as the mother of a daughter to teach her the joys and drawbacks of life without cynicism, and give her the tools to succeed without utter pessimism. I applaud all the mothers out there doing their best to teach and shape and mold and support and then release their daughters. I can’t even imagine what a job it must be.
What I do know is that my mother will freely admit she probably wasn’t cut out to be a mother. She has no qualms admitting it was tough. She loves us ~ there is no doubting that. But she’s not afraid to be honest and admit her short-comings (even if I think she’s bananas because she did a great job). That, to me, makes her even more remarkable, because she does it without the undercurrent of self-pity or self-loathing. She is, was and continues to be incredible, amazing, inspiring. To me (and in the words of Mary Poppins) she is practically perfect in every way. She is my friend, my confidant, my sounding board, my gauge of reason … my mother. I can’t imagine being the person I am today without her and without the gifts she gave me as I grew up.
So thank you, Mama. If there were better, stronger words, I wish I knew them.
joy
For the first time in I-don’t-even-want-to-admit how long, I found myself on my mat tonight. I’d been meaning to get back into my Tuesday yoga ritual since January, but I hit a few road bumps. And yes, I realize that most road bumps are navigable, it all just depends on one’s determination ~ but I’m going to use the excuse anyway.
I’ve taken my fair share of yoga classes, and as I may have mentioned, I found a teacher at my old studio who just made sense to me. I rarely, if ever, missed her class. Unfortunately, the yoga studio closed at the beginning of December and for a while, my teacher didn’t have a regular class. But now, not only does she have one, but I’ve finally gotten my booty in order to attend.
It was blissful. I mean that ~ even though my body feels like jelly right now, and I had a sad moment of truth about ten minutes into class when I knew that I might not be completely out of shape, but I’m completely out of yoga shape.
Appropriately (and timely) enough, meditation was about joy. The opening quote was from August Strindberg (ah, flash backs to college Drama Lit classes, and “Miss Julie”) …
People are constantly clamoring for the joy of life. As for me, I find the joy of life in the hard and cruel battle of life – to learn something is a joy to me.
Let me tell you, there are many ways to find meaning in that quote. As class began, our teacher reminded us that often, we get bogged down in life, and we forget to find the joy. We instead focus on the endless repetitive parts of our day that wear on us. Instead, we should make an effort to find the joy. Find the joy in class, find the joy in folding socks, etc. At one point, another quote included the phrase “cause-less joy” which for me was the essence of what she was saying. Find the joy, feel the joy, for no reason other than joy.
As I struggled through class, I could think of a lot of things not to be joyful about. My shaking legs, my inability to do basic things that back in the fall felt like second nature, my frustration at my numb legs and feet …. The list could go on. And then I re-focused on what I could be joyful about. And there were just as many — if not more. I was joyful to be on the mat again, even if things were challenging. I was joyful to have the ability to still be active, even after losing feeling in my lower limbs in late December. I felt joyful that I wasn’t allowing MS to define me, I was defining myself. I was joyful to be back in my teacher’s class, and to be inspired by her thoughts and guidance. I felt joyful that I’d made the effort to be there, even though new situations usually terrify me and leave me paralyzed in inaction. I’ve grown up a lot over the past few years ~ part of it is adult-hood, part of it is John, and a lot of it is me finding my balance and creating my own stability and support system. I was tremendously joyful about that … in fact, I still am.
And even now, snuggled on the couch with my man and my Lucy, I can feel joy. And I can’t quite define it, or qualify it. It’s just there. And that’s pretty cool.
pick me ups
Sometimes, in the middle of my day, I need a little boost ~ something positive to help motivate me, and keep me upbeat. Twitter is great for this, and because my brain is feeling a bit beat today (work was a doozy!), I thought I’d share some of my recent favorites.
“The best way to avoid criticism is never do anything ever. Or, do what you love, have a great life & let others spend their time criticizing.” ~Ricky Gervais
“Do what you can, with what you have, where you are.” ~Theodore Roosevelt
“Everyday holds the possibility of a miracle.” ~Elizabeth David
“A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing.” ~George Bernard Shaw
“The gem cannot be polished without friction, nor man perfected without trials.” ~ Confucius
“When you feel the world pushing against you, drop your head, lower your shoulder, dig in deep and push back.” ~Dwayne Johnson
And I’ll finish my list of quotes with one from my childhood hero, and still a woman whose career I admire greatly.
“Perseverance is failing nineteen times and succeeding the twentieth.” ~ Julie Andrews
I know it probably seems silly, but reading uplifting quotes just makes me feel so much better. Even now, revisiting them, I smiled and felt more inspired about life. Words are powerful things!
have a little faith
So, this post is going to be a little bit of a veer off the track of MS and cooking and all that jazz. And I deeply apologize for the self-indulgence of what follows, but it’s been haunting my thoughts all day.
As one may or may not know about me, I have fairly … um, clear and personal feelings about faith. I deeply believe it is personal, and everyone’s choices are their own and should be respected. Just as none of us are the same, neither should our relationship with God (or whomever/whatever one believes in) be. I believe that sometimes, the individuality of our relationships gets lost in mass organized religion. We believe that following man’s rules of the church are the measuring sticks of faith and spirituality, and we judge others for their differences or assumed short-comings. It’s a disappointing and discouraging thing.
I’ve spent time searching for something that made sense to me ~ a teacher, a leader ~ a person whose voice spoke the words of the God I believe in. I found that person in a sort of funny, ironic way. The man and I had very long discussions about our wedding, and the things that were important to us. FInding a man of faith to marry us wasn’t a huge top priority, but as the planning progressed, we realized that it was a top priority for my mother-in-law. So, as a diligent researcher, I started to look into options for an officiant. And surprisingly, I found a priest who performed wedding ceremonies. After scheduling a time to meet with him, I wrangled the man into going to Mass at the parish and it was eye-opening to both of us. In fact, in the spirit of full disclosure, it was both eye-opening and slightly uncomfortable.
Today marked our second time in attendance and –for me, at least– it reaffirmed what I’d found so uplifting the first time. Here’s the thing ~ Mass at this church begins with the Sign of Peace, and instead of just turning around in your pew and quietly mumbling “Peace be with You, ” you actually walk around and shake hands and hug and offer the whole congregation peace.
Let me tell you, during our first Mass, we both looked at each other and fumbled through it, as basically every person came up to us and welcomed us to church, and offered us a warm and confident sign of peace. There is an anonymity of going to a large Catholic church that certainly didn’t exist that day (or today, for that matter) that serves as something of a security blanket. It’s one thing to go to Mass and slip right through, unnoticed. It’s another thing to stand up and be seen and counted. That was completely unexpected for both of us.
Today, I was much more prepared. As Mass began, I took a deep breath. We’d chosen to return so I wanted to be respectful of the parish and their Mass. I walked amongst everyone, and it was truly an incredible feeling. We shook hands, we hugged, we smiled ~ my heart felt light and full of positive energy. It’s hard to describe, and I am fairly certain it sounds hokey, but as I returned to my seat, I thought what a great way to start a Sunday ~ what a great and powerful way to begin a worship. For just that small moment, life was distilled into giving and receiving peace with a room full of like-minded people.
LIfe is a funny journey ~ we’re all sort of figuring it out as we go along ~ learning and growing and choosing what defines us; what matters to us. As I mentioned at the beginning of all this, faith is and has always been an important journey for me, but also a very personal one. Today, I couldn’t get the feeling of pure community out of my mind all day. And the message of the homily was just as powerful (I promise not to bore anyone who is reading this with the ins and outs).
I guess my point ~ if there even is one in all this rambling ~ is the power of community, the power of belief in a group of people … it’s sort of amazing. Things have been challenging lately, and every now and then, it’s refreshing (and necessary) to take a step back and appreciate the good stuff. I find great comfort in having faith. And I am grateful for that today.
proactive
This will be short and sweet, because my brain is full of thoughts, but they are fragmented and constantly being interrupted by other, new and looping thoughts.
There was a moment today ~ it seemed as though time had slowed down, the world had paused and it was just me, fighting my brain and trying to take action. The mind is an incredible and powerful thing.
I was asked this afternoon what my motivation was in beginning a drug therapy for MS. I blurted out my answer without even thinking, and realized as I said it, that with the development of my MS, I have stared my greatest fear directly in the eye, and decided I wouldn’t allow it to consume me, overwhelm me or conquer me.
That was part of my driving force today, as I sat frozen, battling my mind and my fear. And when I was finally able to relax, I realized that not only did my mind control my action and inaction, but it created monsters bigger than the challenges I was facing.
I hope that in the dark moments that may come, the power of thought comes to my aid, and not as my foe.
normalcy
Today was an interesting day. The man and I did some spring cleaning (it was necessary ~ piles seemed to be accumulating in all sorts of places in our house, filled with things we felt vaguely indifferent about … not very motivating during the gloom of January and February) but we also ran a bunch of errands. For a misty, bleh Saturday, I felt incredibly energetic. Possibly due to the insane amount of vitamins I am now taking on a daily basis. I told the man that I am going to write a comic book about a heroine whose super power comes from vitamins & green smoothies.
“Like Popeye and spinach?” He said. I nodded, feeling slightly deflated that my idea wasn’t as genius as I originally thought. But I still like it. 🙂
It was a good day ~ a normal day ~ and I revisited some of my posts from January and smiled to myself because even now, I’m feeling much more positive and upbeat. And trust me, I am more than nervous for my nurse visit, and self-injection tutorial. Shivers. Down my spine. Ooooh boy.
As a reward for getting so much accomplished today, the man and I are treating ourselves to a movie tonight ~ “Silver Linings Playbook”. I used to make an effort to see all the Best Picture Oscar nominees pre-ceremony, but have fallen woefully short the past few years (and since the rules changed and the number went up!). This year, the man has generously indulged my addiction, and this is the fourth nominated film we are seeing. We clearly won’t make it to nine, but last year, I don’t think I saw a single nominee in any of the big categories, so I’m very excited.
Usually we have some people over for the ceremony, but we’re going low-key this year. But I’ve still got a meal planned, fixings for chocolate covered strawberries and fake bubbles (we gave up drinking for Lent). I’m in a blogging kind of mood, so I will share all the details tomorrow, after church. For now, we’re scooting out the door to catch our movie. Hope you have a great Saturday night, too!
random thoughts on a monday
This morning, the last thing I wanted to do was get out of bed. The weather was gross (although the snow was momentarily very pretty, and Miss Lucy loved it, as usual), the weekend was too short, and my work week seemed to loom ominously before me.
But, as usual, up I got. I finished my course of steroids on Friday, so I’ve been flying solo for three days, and luckily, my flare symptoms seem to be under control. I spent a little bit of time over the weekend beginning the research my doctor assigned on the various drug treatments for MS, as well as exploring some other dietary options, and reaching out to a few people I have been connected with who also have MS.
It’s pretty easy to read about lifestyle changes, and adopting new diets ~ it’s a whole different kettle of fish (can I just pause for a moment, and say that this expression always makes me think of “Anne of Green Gables” ~ a book I believe all young women should read ~ I think of it with such love and affection, and periodically revisit the ear-marked pages of my old paperback copy … such a beautiful and enchanting story) to actually do it. I have been struggling with this. A lot.
Many things I’ve read have shown that diet is an important part of living with MS. We’ve started being much more consistent about our Green Smoothies (every morning!) and we have eliminated gluten (slightly more challenging but we’re working on it). I was referred to another diet completely associated with coping with MS called the Swank Diet, which restricts fats and animal protein. Some people believe a raw vegan diet keeps flares at bay.
Figuring out how to give up meat (red or any other kind), dairy and basically, carbohydrates has been such a learning experience. When I first considered it, I behaved a little like a petulant school girl. But as time has gone by, with the support of the man (and my pescatarian puppy, Lucy) I’ve stopped being childish, and embraced the idea. I repeat, the idea. The practice is much more challenging.
So, John suggested I try finding recipes I find appealing without classifying it as either ‘vegetarian’ or ‘gluten-free.’ And I am excited to say that I have three recipes I am fairly bursting with excitement to make. Watch this space. Hopefully they are all good!
I think what I’m learning ~and I cannot emphasize this enough … the hard way (if I didn’t feel motivated to protect and preserve my health I might not be so determined) ~ is that for me, making these changes has to be one baby step at a time. I know that what I’m doing is for the best in regards to my health and future. And I also know my baby steps need to be in fairly rapid succession. There isn’t time to waste. But this is hard. And it’s way harder every day than it is in theory, at the beginning. It’s about making the changes, and establishing the routines. And sticking to it. And not making exceptions. And it’s really hard. So, welcome to week #2.
D5 Creation