Archives
now browsing by author
wonder woman
There are a few things my husband will tell you about me if you ask him.
The first is that he loves me and I love him.
The second is that I love musical theatre and have been driving him crazy with “Hamilton” since April.
Third, he’d tell you I have a really cool job in the restaurant industry. (He thinks much more highly of it than I do at times).
And then he’d tell you that under the surface of my benign agreeability, I’m a rampant feminist. Not like — we don’t shave our under-arms or we spell the word wiomyn with a “y” to avoid the word men. No, no. Not THAT extreme.
But the truth is, I have memories from a young age of my mother surrounded by women from the Berk’s Women’s Network collating newsletters and being very vocal and strong about women’s rights, equality and all that goes along with what I like to call “smart women’s feminism.”
I’ll vote for Hillary because it’s taken until 2016 for a woman to even be considered as a candidate to run our country. And while she might have some skeletons, she’s smart and she takes a boat load of shit that would never be said to men.
I deal with the undercurrent of sexism on the daily. Sometimes it rankles me, and other times I just let it slide. I fight too many battles to work myself into a frenzy every time someone is condescending to me, or treats me as though my brain is somehow on a lower level than one attached to a penis.
But I will tell you that there are few things that get under my skin more than women who use sex and feigned ignorance and naiveté to achieve things that the rest of us work tirelessly for because we have integrity and self-worth. And it really angers me when it happens to me repeatedly.
Ladies, let me say this — and I will say it repeatedly and loudly.
Save yourself. Have enough dignity to look yourself in the mirror and love yourself, flaws and all. Have enough decency to ask the world to see what you have to offer beyond your pretty face and adolescent boy body.
Not only do you do damage to yourself, but you do damage to every other woman out there, fighting tooth and nail for equality and respect.
Something else my husband might tell you. It takes a while to get to the breaking point. But once I get there, there’s really no coming back. I’ve worked very hard for everything I have and for everything I do. I was not given hand outs, or favors. And I can be just as venomous as I can be kind. So there’s that.
reset
I think one of the most challenging things is to stay the course, and never veer off the path.
I say this first — because this past week has been a beast for me. Heat, and M.S. and work, and fatigue and … well, just about everything. I felt like my spinning top was beginning to wobble, and I just couldn’t right it. Burger here, candy there, not enough exercise, not enough water. I couldn’t pull myself back on track.
And I say it secondly, because last night my phone rang as John and I drove home. Luckily, we were at the gas station (it’s not easy to answer the phone while driving in the Jeep with no roof or doors — just very loud). And I answered, and on the other end of the receiver, my friend just began unloading a little bit of her soul. And all the things I remembered going through at the beginning of M.S. came back to me, and i heard myself in her words, in her fears, in her anger.
When I was diagnosed — which feels a little like yesterday, and a little like a lifetime ago — I thought nothing was going to change. I really did. I believed that. Deep in my soul, in the depths of my bones. I was very, very wrong.
Everything changed.
But I had to walk that road. And it was a challenging, difficult road. I was angry for a long time. I felt trapped. Everything felt hopeless. I was scared. Terrified of the disease, terrified of the treatments. Hopeless and helpless. I couldn’t even determine what my path was, since things were constantly changing & my body was letting me down in different ways nearly every day.
And even the things I thought I knew — they were hard to remember in the anger and the pain and the fear.
It’s still hard. This week was a testament to that. But it’s not as hard as it used to be. It’s not Lydia-hard.
I think it might be Lydia-hard for my friend. And my heart breaks thinking about it. I want to say the right things, I struggle to remember what I wanted — needed — to hear back then. That it would all be okay? …. Will it? That the medicine will fix it …. Will it? I don’t want to make promises that I can’t be sure will be kept. I don’t want to reassure her with empty words.
I didn’t have anyone at the beginning who really knew. I mean, John understood. He understood having an incurable disease, he understood hospitals, and tests, and doctors and medicines. He understood how much it takes out of you — the worry, the anxiety, the fatigue. But he didn’t understand how my body was invisibly breaking down. I want to reassure her, because I know what it feels like to look totally normal on the outside, but to be feeling horrific with no visible symptoms. To have people dismiss something because there’s no physical evidence.
I want to be there — let her know that it will get better. But when people said that to me three years ago, it made me angry. How could they know? They didn’t understand. Their doctor wasn’t saying they were a tough case. I want her to know that there are people in her corner, people who will catch her when she falls. But all those words from people made me so angry.
Is it better because I have the same disease? … Maybe …. I don’t know.
What it made me think about last night, as I housed my third Wayback burger this week (yo, that Philly Burger is out of control delicious!) was that i needed to give myself a break. I needed to take a deep breath, shake off this week, drink some water, get some sleep and get up in the morning and start again.
So that’s what I did.
And I rode my bicycle for an hour. And I had a green smoothie. And I feel slightly more centered. And slightly less angsty. And I know that if I just focus, I’ll be okay. And hopefully, so will my friend.
hitting the wall
Two weeks ago, I had my first real business trip.
I don’t know why it was so exciting — but I was thrilled with the idea that I was traveling for work. I didn’t care that we were going to Kansas City (and Denver, but the business was in KC) and flying every morning for three consecutive days. I didn’t really think that missing my daily bike rides would be a big deal, and I figured Starbucks (with their chai tea and green juice) were everywhere.
On the heels of this illustrious business trip, I had invited all my work people over to the house for food. I don’t know what I had been thinking when I invited everyone — but I had, and it pulsed on the calendar — dark black letters, and the knowledge that at some point, I’d thought it would be ‘fun’ to have my co-workers and boss over for food. (It was actually fun!)
Long story short, I mentally survived both the business trip and the little afternoon get-together. But my body did not. I woke up last Monday and could barely walk. Everything made me dizzy. I wasn’t sure what I remembered and what I didn’t from the days that had preceded it. My body just shut down. And remained in power-save mode for nearly a week.
I’m telling you, I’ve had these moments before, but never quite this debilitating. Never quite this all-consuming. I spent Monday in a fog of sleep and intermittent email checks. I only got out of bed to use the bathroom. And once to venture downstairs to eat. But in general, I felt like I was going to die.
I’m sharing this mostly because M.S. is no joke, folks. And even those people who live with it every day live very specifically because of it, or live very uncomfortably. I was so angry for so long about the sacrifices. But now, I fully understand and appreciate why things are the way they are. I’d rather eat vegetables, ride my bike and go to bed at 9pm and still be able to fairly fully and functionally exist in society. Rather than do whatever I want, whenever I want, and pay the price over…and over… and over Because the further into this abyss that I slide, the more I know about how long everything takes. And with M.S. it’s about ten times longer than normal. Ten times longer to heal. Ten times longer to recover. Ten times longer.
Most people can do a three-day business trip, go to work the last two days, prep their house for some people to come over and eat, and then continue into the next week unscathed. Not this little duck. Yesterday was the first day I woke up and didn’t struggle to walk the first few steps out of bed. Seven days after our luncheon.
I used to feel self-conscious if I said no, or went to bed early. As though I was being a bummer, a drag. I’ve gotten over that. Every once in a while I push it too hard, I try to go a little further than I should…. And then last week happens. Brain fog for a full week of work. Night sweats. Painful exhaustion. And I remember with amazing acuity that I have multiple sclerosis.
for these things ….
There is nothing quite like the first sip of chai in the morning.
I’m sure people feel that way about coffee. But for me, it isn’t about staying awake, or even waking up. The warmth and milky sweetness is just utterly comforting.
I have tried many times to give up my chai. And I can’t. And I probably won’t. Ever. The little things in life that make us smile are worth keeping and cherishing.
This morning, after shivering the entire ride into the city (and for that, I actually DO say thank you to Septa because a person cannot always rely on their train to be cold in the heat of July), I made my way to Starbucks (as I do every morning in the city). Most of the baristas know me, and they know my drink. I’m nothing if not a creature of habit.
And as I walked back toward the office, twenty ounces of soy milk and chai syrup safely cupped in my hands, I thought about all the little things that make me happy. Maybe not every day — we all have really bad days — but most days.
I love the city in the morning. It’s a little hard to admit that, because Philadelphia and I have a love/hate relationship that tends toward the ‘hate’. But before everyone gets angry, and the streets are hot and sweaty — before the gates are raised on the storefronts, and only half the population is awake — that Philadelphia is my favorite.
It isn’t easy dragging oneself out of bed before six a.m. (yes, there are lots of us awake before six, but it doesn’t make it easier!). I’m usually stressed out because I am running late for the train (Septa can be late, but us riders cannot!). And the ride in can be tedious and full of weird smells, loud phone talkers and grumpy conductors. It’s a cost/benefit analysis every day — the train can be much too public, however! ~ driving into Center City from our new house makes me want to gouge my eyes out.
But when you finally emerge onto Market Street, and it hasn’t gotten grossly humid yet, and the city is humming quietly as it stretches its arms and begins to wake up — it makes me grateful to come into the city multiple days a week, despite the very long commute.
I’m grateful for my new office (despite all the challenges) because it’s full of windows and natural light.
I’m grateful that I don’t punch a clock.
I’m grateful that when I get off the train at night, and speed walk to my car in an attempt to get out of the parking lot before the swarms of people also disembarking at Thorndale, that my house is less than five minutes away. And Lucy will be there to greet me, with her wiggly tail and her toy gripped firmly in her mouth.
I’m grateful for our walks around the neighborhood (currently a construction zone) and for the time I spend getting sweaty on my bike (stationary or mobile ~ either works!).
I’m grateful for my house, and its comforts.
I’m grateful for my husband. This could be an entire novel, so I’ll limit it to the fact that he is my best friend, and we get to hang out with each other nearly every day. And wake up with each other nearly every morning. And share all the goodness of life with each other.
I’m grateful for music, and especially “Hamilton” ~ the musical that restored my faith in the art form I have loved since childhood.
I am grateful for my family and the fact that they live twenty-three minutes away (just ask them!). I am grateful that my dad comes to walk Lucy on Fridays while John and I are at work. I am eternally grateful that they are always there for comfort, for advice, and for dinner.
I’m not sure why I felt moved to write this post. But life gets really hard, and there are very dark moments. Gratitude is important.
friday morning
I’m on my way to meds this morning. It means getting on the 6.50a train – which is now the norm because of the issues with Septa’s car fleet that was taken off the rails over 4th July weekend. The parking lot was nearly empty this morning – I guess a lot of Thorndalers don’t work on Fridays.
Yesterday, over 70 people were killed in Nice during a Bastille Day celebration. Our world is sliding slowly toward chaos. I wonder about my friends who have small children — I wonder if they think of the world their children will inherit one day. It hasn’t — as yet — seemed to inspire much action amongst my generation except memes on Facebook and angry rants without actual thought. Saying we need change is like saying I’m going to be the next President. Empty without any action.
I’ve felt like writing a lot recently. Not because of Nice, or Orlando, or Paris before that. I feel as though my thoughts -on all of the violence and hate that seems just under the surface of our world- are muddy and confused. I want to understand – I really do. But I don’t understand and I don’t know what the best thing to do is.
This morning, all I want to write about is my bicycle. Somewhat trivial and insignificant in the face of the tragedy our world is dealing with. But meds week is exhausting for me — more so in the summer, when the heat is debilitating. So this week, along with my bi-annual meeting with Dr. M, has been excruciating.
(P.S. Loud people on the train at 7am irritate me. They shouldn’t. But they do. Shhh people!)
Yesterday I made my way home through a fog of fatigue, kissed my Lucy Lou, took her on a walk, and then shuffled down to the garage and my bicycle. We also have two real bikes in the garage — we have gone on a long ride since buying them. But I am much more consistent about jumping on the stationary Schwinn, picking a course and time goal, putting my head down, and falling into the story of ‘Hamilton.’ (Yes, folks. I work out to ‘Hamilton.’ At this point in my life I do just about everything to ‘Hamilton’.).
And here’s the crazy thing — after 45 minutes, a lot of sweat, and 15.6 miles (my best time/distance combo so far) I felt infinitely better. My mind felt clear. I felt energized. I realized, as I wiped the bike down and began shutting off the lights and the overhead fan, that I am probably addicted to the bicycle. I’ve joked about this before, but yesterday it felt real.
Before M.S. I began running. I did Broad Street — i had the Nike app on my phone. Lucy and I did between four and five miles most mornings.
And then I broke my foot. And M.S. began to consume me. My legs got weak, we got Lydia — walking became harder than running ever was. And time slipped by. I was sad, and angry. I felt trapped. I tried going to the gym and swimming. It felt great — but the amount of time it took — get there, get changed, get wet, get out, get dry, drive home. I was rarely motivated to go.
Last October, during a routine scan, John’s doctor’s saw a shadow. And then surgery became necessary immediately. And so, he bought a stationary bike. For himself. To help with recovery. It sat in our house from November until about mid-January. It became what most home exercise equipment becomes — a collector of dust and occasionally laundry.
I don’t remember what got me on the first time. Maybe our upcoming trip to Italy. Possibly not wanting to stare at a lot of wasted money. Not sure. But when we got home from Italy, I decided to make some changes. So on March 1st, I started riding the bike. Every day.
I didn’t like it a whole lot at first. It was a drag, it took too much time, I got all sweaty. I didn’t have work out clothing. I had EVERY excuse in the book. So I signed up for Fabletics (online advertisement = works). I’d read that having nice clothing helps with motivation to work out. So I ordered my first outfit — orange leggings and a white tank.
I wore those leggings ALL.THE.TIME. I love them. I wore them grocery shopping and to Va La Vineyards. And I wore them to ride my bicycle. Every day. When April rolled around and I ordered my second outfit, I couldn’t wait to not have to do laundry every day. I’d committed to at least 66 days of working out (something I’d heard about having to do something for 66 days for it to become a habit). I began actually using my “My Finess Pal” app for the first time in about four years.
It’s halfway through July now. I have four or five workout outfits, padded bicycle shorts, body butter, riding gloves …. The list (surprisingly!) goes on. Now, my bike isn’t a daily purgatory. It’s where I go when I’m sad, when I’m mad, when I’m tired. It is 45 minutes a day (give or take — sometimes I max out at 30 and sometimes I push to 60… it really depends) that is just my time. It makes me feel good. Really good. Healthy and as though I’m taking care of myself. I want to give this gift to everyone. I understand why fitness people hype it up so much. But you can’t actually give it to anyone who isn’t willing to push through.
Because it’s not super fun at first. And I have a feeling that if you slip, and miss a couple of weeks — it isn’t easy to go back. But it feels like a precious gift, a little secret weapon that I hold closely in the palm of my hand. That no matter what, I can get on my bike, and get sweaty, and feel better.
always day two
I’ve always felt that the second day of doing anything is the hardest. You begin your endeavor on day one with enthusiasm, great intentions, optimism. And after that first day, you have a much better idea of what is in store.
That’s how M.S. goes.
I started out full of optimism, all the things I was going to do – the things I was going to prove. The disease humbled me fairly quickly. J and I spent yesterday in the Neurological Unit at UPenn’s Perelman Center and no matter how hard I try, how far I believe I’ve come — sitting in multiple doctor’s rooms discussing all my symptoms, how I’m walking, what my numbness level is — it’s all exhausting. There are no secrets between my husband and I. Health issues have prevented that.
This gloomy Thursday morning, as the train makes its way laboriously into the city, my head is filled with thoughts, fears, details i forgot to mention. Multiple sclerosis is no joke. Maybe the average observer can’t see my struggles (and that in itself can be very frustrating) but they are there… every second of every day.
I lost feeling in my feet on December 23, 2012. I remember very clearly, because we were in Mansfield for Christmas, and I hoped (prayed) that it was just a circulation thing. Or maybe a pinched nerve. I very clearly remember wondering if I’d ever feel my feet again. It was terrifying at the time. Now, it’s just life. I don’t remember when it climbed up my legs and down my arms. It’s better than it used to be (Tysabri, food, exercise, etc). But my pinky fingers and ring fingers are always tingly.
The thing about M.S. is – you can’t quit it. So it just perpetually feels like day two, a vast unknown future full of questions. Fears. I have tried over time (after the anger and the denial and the sadness which inevitably comes) to find my way. To crack the code. And sometimes I feel like I have it under control, and other times I feel lost and alone. I wonder if I’ll ever not have a headache, if I’ll ever not feel exhausted. But it’s always back to putting one foot in front of another. In having faith that the choices I am making are good ones.
It’s always day two.
breaking through
I’m tired all the time.
Not occasionally, or if I have less sleep than normal.
Constantly, unrelentingly. Always.
This is one of the most joyous parts of having M.S. (To be fair, I felt constantly tired before the diagnosis, I just didn’t have an explanation then).
Fatigue is a funny thing. I stumbled through yesterday morning, as if in a dream. I had two chai teas (in an attempt to be more ‘with’ it — and was then sugar-high and jittery all day). I struggled mightily to remember the end of Sunday night. Not because I’d had too much wine, but because by the time Sunday began to wind down, I had crossed over from ‘normal’ fatigue to overwhelming, bodily-function-shutting-down fatigue.
Every day is a learning experience. I think it probably is for everyone, but I’m much more tuned-in to it now. I have to figure out the pieces of this puzzle in order to live as normal a life as possible. And the fuzzy vision and tingling legs are significant M.S. factors, but really, the thing that has taken over my life is the fatigue.
In the most basic understanding that I have, multiple sclerosis is my body’s immune system mistakenly attacking my nervous system. Probably because it’s so tired, it has no idea what is going on. Being familiar with that feeling, it makes total sense. But jokes aside, energy is constantly being used to fuel this mistaken battle in my body, leaving much less for other (also important) things. So when you first get diagnosed, and doctors tell you to just keep living a normal life ~ that’s not the best advice. Sadly.
What I’ve found is that the healthier I am, the less pressure I put on my body (to digest food, to be hydrated, to have enough rest, etc) the better I feel. Now, my meds are a huge factor as well. My meds shut down my crazily active immune system when it seemed to be wrecking my body every four to six weeks. But keeping that calm consistent is two parts meds, and one part smart living.
Sometimes, I don’t realize that I’m maxing out my body’s capabilities and i have a morning like yesterday. Sunday didn’t seem bad while I was living it. But waking up with no memory of my evening and feeling as though I was walking through water the whole day … not the best. Sometimes I feel tired and I get on my bike anyway, and I actually feel better (weirdly counter-intuitive and I’m still figuring it out). I know routine is my friend. I know water is my friend. I know vegetables are my friends. Alcohol is not. Meat is not. Staying up past 10pm is not. But I haven’t really hit on a consistently winning formula yet. Sometimes we have a nice steak dinner and a bottle of wine, and I feel exactly the same as I do when I eat zucchini spirals and drink 90 ounces of water. Other times…. not so much.
And managing the vision and the numbness is much easier than managing the fatigue. I can’t seem to figure out what works. Some nights I sleep for eight hours. Other nights I get up every two hours to use the bathroom. Some nights I am out like shout. Other nights I lie awake trying to calm my mind. Sometimes I am burning up and sweating through my pajamas and sheets. Other nights I pile on blankets in an attempt to get warm. Nothing ever feels consistent.
Sometimes I worry about how my work schedule with the pressure and stress affect my body. Whether it’s a major factor when I get cotton brain. I wonder if that’s why the bike helps even when I feel tired — it alleviates the tension gripping my body.
Mostly I just push through. Having M.S. means learning to live with the fatigue. It means participating in events or attending parties even if sleeping seems vastly preferable. Because the sleep never alleviates the overwhelming tiredness. The tiredness is a constant companion. You have to break through to the other side; learn how to live with it. How to function within it’s limitations. It’s about both learning how to say no and learning how to say yes. Learning how to prioritize. Recognizing the signals your body sends you. (I am not very good at this yet, but I’m getting better).
a few days of magic
We checked the weather pretty consistently leading up to our trip to Iceland. The forecast was gloomily unwavering ~ 53 degree high with 70% chance of rain every day we were there. I wasn’t too concerned. I don’t like hot weather and rain doesn’t especially bother me (it more so bothers my naturally curly hair, but ce la vie when in Iceland, yes?).
So it was a super surprise that our last few days were filled with sunshine. The golden glow of the sun makes Iceland even more magical than it is in the grayness.
We arrived at six a.m. last Friday morning, and after getting our rental car (a cute little VW Polo with heated seats!) we made our way down route 41 from Keflavik to Reykjavik. It felt oddly surreal. To begin, our flight had been somewhat painful ~ neither of us had ever done a transatlantic discount flight, and let me tell you, Wow Airlines is discount. So we were tired. There had been several delays for various, increasingly absurd reasons, and then no pillows, no water or snacks … and a fellow passenger who insisted on keeping her window open, allowing bright sunlight to stream into the cabin the whole flight.
The thing about Iceland is that it reveals itself slowly. The mist and Scottish rain were in full force as we searched for our car in the parking lot. The country felt vast, as though emptiness stretched out in every direction. When we were finally ensconced in the car and we’d duly read the driving instructions (road signs for four-wheel drive only roads, how to navigate blind corners, flooded roadways, being mindful of the strong wind, etc) we set off, finding out that our GPS didn’t work, and doing it the old-fashioned way (y’know, with road signs and paper maps). The country-side was fascinating~ volcanic rock covered in vibrant green moss interspersed with clusters of bright purple flowers. Puffs of sulfuric smoke billowing from the ground ~ a different cloudy white than the mist.
We made it safely to Reykjavik, sprawling along the shores of the ocean. It didn’t feel like a city, but a country town filled with quaint buildings and shops. Our apartment was close to a main thoroughfare and after checking in at the office, we headed down for breakfast at a cafe recommended by a friend. It was surprisingly good ~ avocado on rye toast topped with arugula and bright, sunny side up eggs. After eating, I felt a little more like a human so we wandered into stores and explored the area, waiting to hear that the apartment was ready for our occupancy. Reykjavik is amazing ~ clean and filled with well dressed people, flowers blooming in overflowing pots on every lamppost, cobblestone streets, musicians on the corners and street art lining the narrow roadways. Our first day was filled with tiny discoveries of the country ~ clues as to the Icelandic culture and people. We did an early dinner at a small restaurant called “Old Iceland” (it was the best meal we had our whole trip, and we had some great meals). Cured salmon, plump sea scallops, and our first taste of Icelandic Fish Soup. We ventured up to the church at Reykjavik’s center after dinner. Following that, I was dead on my feet and looking forward (very much!) to sleep.
On Saturday, we did the Golden Circle. Iceland has a road that traverses the whole island called the Ring Road, and the Golden Circle is a small piece of that route. It includes Thingvellir National Park (the rift between tectonic plates), Geyser and Gulfoss. We spent the whole day on the Golden Circle. Everything was more beautiful than the last thing, and when you finally walk across the windswept moor and see the Gulfoss waterfall at the pinnacle of the trip ~ it takes the breath right out of your lungs. We walked right up to the side, rain coats zipped up and hoods on. It felt like true, pure, unadulterated magic.
For John’s birthday on Sunday, we booked time at the Blue Lagoon and the LAVA restaurant there. We arrived in the mist and rain of the morning ~ by far the coldest and rainiest day we were there. After navigating the gauntlet of the changing rooms, I met John on the other side, and the lagoon spread out before us, fading into dark cliffs and mist. We waded in, water warm as a perfect bath, and slowly floated out, stopping to get glasses of champagne at the lagoon bar. It was amazing, how blue the water was in the dark grayness and rain of the day. The juxtaposition of the water’s warmth and the rain’s slick coolness remains indescribably perfect. The water was opaque, so you couldn’t see your hands even an inch beneath the surface, and no matter how much time passed and how many more people arrived and drifted in, it never felt crowded or loud. It just felt blissfully peaceful. People covering their faces and arms with silica masks, floating into caves and underneath the man-made waterfall. We found perches in shallow water and just sat, talked and drank champagne. The epitome of decadence. Lunch was yummy, too. We did fish soup again (it is exquisite) and I had lamb, since Iceland is very proud of its lamb. It was tender and perfectly seasoned, served with buttery baby potatos and perfectly cooked vegetables. The restaurant did a special dessert for John’s birthday which was both beautiful and delicious.
We’d left Monday open, because we didn’t want to overbook ourselves (MS has taught us that). So when we finally pulled ourselves out of bed, we decided to drive south, toward waterfalls and black sand beaches. On a small quest to see the Iceland we’d come to know from “The Secret Life of Walter Mitty.” The Iceland we saw was better. Full of blinking sunlight and intermittent rain. Craggy cliffs drifting into the clouds, waterfalls dotting the mountainside. Volcanic rock softened by moss. It was the perfect last day, which ended with a walk behind a waterfall and sandwiches from a food truck. As we wound our way back into Reykjavik at nine p.m. the city had begun its celebration of the big Euro Cup win over England. Fireworks set off in the midnight sun, car horns intermittently beeping. The kindest and safest sports celebration I have ever witnessed in my life.
Tuesday morning was full of sunshine, not a cloud in the sky. The blueness was vibrant. We made our way back to Keflavik and enjoyed our last fish soup at the airport with Sauvignon Blanc and cured salmon over sliced hard-boiled eggs and arugula. It was the perfect end to a perfect trip.
Iceland gets into your consciousness, filling it with optimism, with peace and gentleness. I felt changed as we flew home across Greenland the wide Atlantic Ocean. I hope, as life reverts to the routine, I remember to hold the stillness, and peacefulness of Iceland in my heart and mind always. And I very much hope that our next visit isn’t too far in the future.
choosing tysabri
I’ve been diagnosed with MS for about three and a half years. Who knows how long I’ve had it ~ they don’t know what causes it, and I was first tested at a very young age. MS is a tough diagnosis, and they didn’t have enough when I was twelve. But I remember getting the diagnosis at thirty-three and instead of being immediately scared, I was relieved that finally an explanation existed for how I felt.
After that, i got scared. After breaking my foot and taking forever to heal, and then slowly losing the ability to walk any distance, or see anything clearly. I got scared then. I was on four different medicines before my doctor convinced me to try Tysabri. We sat in an office for hours, debating the pros and cons, asking a myriad of (what seemed like) trivial questions. Dissecting all the options. Addressing the fears. It was probably the moment that I decided to trust this man who’d always seemed somewhere else, distracted, too in his head. Who’d stared intently at a screen and told me I was a tough case. This man who said he’d tell his wife to try Tysabri, despite all the possible side effects. That it was my best — my only, really — option. We’d tried everything else. Nothing else worked.
There’s a difference between doing something because you want to, and doing it because you have to. What I’ve found, across these years, is that understanding why I have to, and then learning why I would want to, is the best formula for me. In 2012, if you’d told me that I should be a raw vegan who never drank wine and who went to sleep at 8.30 at night, I would have laughed out loud and then gotten internally angry. Truth.
I’m not a raw vegan now, and I do drink wine. But whew, the difference between who I was then, and who I am now — worlds apart. Today I can say, very honestly and without a tinge of irony, that some of my favorite foods include spiralized zucchini, green smoothies, kombucha, and raspberries (to be fair, raspberries have always been my favorite). A good day for me begins with a green smoothie, includes kombucha at lunch and ends with a sweaty bike ride on my stationary bike, wild cherry flavored sparkling water, and a dinner full of veggies. Zucchini with Portobello is a favorite. I also love peppers. Mashed cauliflower is delish.
I’m pretty sure my 2012 self would look at my 2016 self and roll her eyes. She would think this person I am now is being absurd, and that cheese and red meat never killed anyone. That life is meant to be lived and enjoyed. Wine is good for you.
But the thing that has inherently changed is that my life feels infinitely better when I live clean. When I hit goals on my bicycle, or discover a new recipe full of veggies that tastes good ~ those are great moments. I love my routine, the rhythm of this new life — the way things feel. But I wouldn’t have done it by myself and I know that. MS made me do it ~ MS made me appreciate taking care of myself. MS helped me see the everyday benefits of exercise and hydration and proper sleep.
In three days, John and I are heading to Iceland for his birthday. We booked the flights one night in November watching “The Secret Life of Walter Mitty,” As the trip has grown closer, we’ve gotten more and more excited. I just booked our tickets for the Blue Lagoon on his birthday. We’ve planned our daily excursions, and our wish list. We have hiking poles, waterproof hiking sneakers, lightweight packs and rain coats. We have awesome sunglasses and lenses for our camera. We cleared out our iPhones over the weekend so we both have tons of storage. We’re ready.
And if I hadn’t listened to my doctor, and then systematically embraced my new life limits, we wouldn’t be going to Iceland. Because I wouldn’t be able to walk more than the length of one city block. I wouldn’t be able to climb stairs without holding on for dear life. We wouldn’t have been able to go to Venice this past February, and we certainly wouldn’t have booked another trip to Jackson Hole for September.
Tysabri is a little scary. There are instances of patients contracting a fatal brain infection. It messes with your organs. I have so much blood drawn on a regular basis, it would seem strange to people who don’t have to deal with an incurable disease. But I’m probably healthier now than I’ve ever been. That’s the craziness of life.
When I was first diagnosed, John did a lot of reading about MS and I did none. I thought ~ yeah, I deal with it personally every day, I don’t need a thousand other people telling me their struggles and sad stories. My numb feet and spotty vision are good enough for me. But John read people’s accounts of how they dealt with their disease. And I remember, very clearly, a story about a woman who was diagnosed and now swims every day, eats super clean and proclaimed that she was healthier now than she’d ever been. At the time, I thought that was ridiculous. Now, it makes sense.
This past weekend, my little brother did a 36-mile hike in Banff Canada. I see that, and I don’t get sad or angry. i get motivated. I can do that. Yeah, I have MS. That’s a bummer. But it doesn’t change everything. It just pushes you to look at life in a different way.
anniversaries
On Wednesday, John and I celebrated our third wedding anniversary, and the eighth anniversary of our first date. And Thursday marked the fifth anniversary of this blog ~ begun as a cooking blog, as I figured out my way around a kitchen, and then becoming something else entirely. Later this month, we’ll celebrate John’s birthday, which also serves as the year mark of my little brother meeting his lady-love, Joanna. And in September, Joanna will move to Austin and they will begin a joint life. Everyone, hold your breath ;).
I’m a big birthday and anniversary person. I believe in celebrating people, not only for who they are, but for what they’ve been dedicated to. Today serves as the last day of work for a man who pre-dates me at our company. I think ~ besides my boss ~ he’s the only one left who ranks above me for longevity. Over six and a half years, and now he’s moving on, to do something different. To learn from someone new. My heart broke a little when I hugged him goodbye ~ sweaty and hot from moving offices (again. for the seventh time). I wasn’t prepared to say goodbye. I was sad that we weren’t doing something more to thank him for the years he’s worked with us. But my boss (the owner) doesn’t really believe in anniversaries, or acknowledging people’s time with the company. I hit year after year in January, and he’s never once given any indication of knowing that it’s my anniversary.
I think it’s important to celebrate people. To say thank you for your time. Thank you for your existence. Thank you for your dedication, your loyalty. I think it encourages people, makes them feel appreciated. I love celebrating things with my hubs because I like knowing that after all this time, after all these shared memories and our joint lives, we still laugh together, our eyes still sparkle when they meet, we still turn to each other when things get tough. We know each other better, we understand each other’s ebbs and flows. It’s a good thing ~ that one day we will have shared more time than spent it apart.
It’s already hard to get through the day, to keep your head up when one thing after another comes crashing in after you. Saying thank you, for your time, for your spirit, for your thoughts and contributions ~ it’s a big deal.
I’m sad that Haronn is leaving us. I’m sad that he won’t be opening dough or garnishing pizzas the next time I rush through the restaurant. He won’t be there to harass me about something or give me a message for my husband about football.
I wish him all the luck in the world. And a small part of my heart is deflated, knowing that soon, other people will know that he loves the Green Bay Packers and Brett Favre; that he doesn’t allow his children to believe in Santa because he works hard and they should know that he got them their gifts, not some bearded man in a red suit.
I’m sad that life is moving on, and changing, and no one asked if I was okay with it.
D5 Creation