April, 2017
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rise up
John and I arrived as dusk was settling in on Sunday. First, we checked me into the Family Lodge and then headed to the hospital proper to get him registered and into his room. I’m starting to learn NIH. It’s somewhat strange and surreal.
Despite telling us multiple times she would not be here, as we rounded the corner of admissions, John’s mother sat in a chair, surrounded by multiple bags of ‘stuff’ (her quilting, etc). She smiled widely at John. My heart bottomed out.
It has been a long few days, and yet this morning, as I rushed to get over to John’s room before the nurses arrived to take him down to surgery and worried about logistics of things that -in the end- won’t matter and I will not remember, I worried about her, sitting two floors below in John’s father’s room, fretting about her husband and her son.
John’s mother and I are like oil and water. We have never understood each other, and that is unlikely to change over time. We come from different places, we see the world through different lenses. Nine years in, It is about rubbing along as comfortably as possible since we have deep and unbridled love for the same man. Her son. My husband.
**
I’ve sat in this surgical waiting room twice before — first, for Alan’s surgery several years ago. John and I were together then. And then last December I sat here alone, as I do today, as John undergoes the same surgery he underwent last December. It felt much less intimidating today, I understood what was happening better, the nurses were more friendly. I am sending texts to John’s mother, as she sits with Alan upstairs in his room.
Healthcare is a bitch. I mean, it’s great, wonderful — sometimes ground-breaking and life-changing. But it’s exhausting. Hallways upon hallways of neutral colors, stale air pumping through vents. Dry erase boards covered in red or black ink. People on cell phones, their minds pre-occupied with something else, somewhere else.
It is nearly impossible to stay upbeat, positive, optimistic. Throw in an unexpected mother-in-law who already grates on your skin like nails on a chalkboard, and it feels like climbing Mount Everest every day. Sisyphus eternally pushing a boulder in Hades. (Yes, I know my husband will not like this blog post).
The thing is, it’s a struggle. It’s a struggle that I shoulder because I love my husband more than anything in the entire world. Because, despite the challenges of life, of my disease, the insidious M.S. with its joys of fatigue and spotty vision and muscle spasms — there is nothing in my life without my husband. His is my North Star. And because of that, because of that infinite love, I try very hard to rise up every day. To face the challenges presented by his disease, by his mother, by life. I do not always succeed. And I am not always graceful. Sometimes I falter, sometimes I crack and break. Sometimes tears come, without warning, as frustration and fear grip my heart and lungs. As I feel lost and alone, whipped around by unending winds of change and darkness. But still. The sun rises. It sets. Time marches on.
As humans, it’s all we can do. Rise up for the people we love.
time rolls by
It’s funny that it’s already April 21st (a day which deserves recognition as the birthday of a monarch who has done more for a country but also for women’s equality, than anyone will soon do again).
Last weekend, we hosted Easter for the fourth or fifth time — both sets of parents, plus my dearest friend (I am not sure how I have been so lucky to have a friend like her) and her significant other. I didn’t think it would feel so stressful, but it did. And while I think the majority of people in attendance had a good time, it always weighs on you when you believe you failed someone.
On Sunday, we leave for NIH.
It sits on my heart and my lungs, it weighs on my arms and legs. It stymies my mind. We spent a week there sixteen months ago and John had major surgery. And next Wednesday, he has it again. For the same issue. The past few days his ear and jaw have ached, and the pain — perhaps somewhat psychosomatic — has extended down his arms, into his joints. Surgery and anesthesia are overwhelmingly complicated. They leave you feeling powerless and adrift.
I woke up at 5a this morning. I had meds in the city and I knew the weather was promising to be brutal (it did not disappoint). I worried about rush hour and wanted to get a head start. The grayness of night still hung over the sky as I turned my seat heater on and set off on the drive.
Five hours later I was home. I’d made it by the skin of my teeth (God bless the poor man operating the parking lot ticket machine — I don’t believe I was the epitome of patience and kindness) and then, post-meds, after grabbing a soy chai latte from Starbucks (no longer a regular part of my unemployed life) I set off home and enjoyed a much better drive. Lucy was waiting, her Kong gripped in her mouth, her body twisting into strange contortions of what I can only believe was happiness. I absent-mindedly patted her head. I staggered upstairs. My brain was full of fog, my limbs felt heavier than anything I’d ever lifted. Such are meds days.
My husband has always been the example I strived to follow. He lives life and no one knows that his body is ravaged by a disease the doctors cannot control. I think of that, hold onto it, when I am feeling petulant and weak in my struggle with M.S.
Life is not easy. It certainly is not fair. My email contained a note from my mother – the status of her recent round of chemo and her health. It wasn’t bad. But it certainly wasn’t sunshine and roses. Cancer sucks. Full stop. I think of that when I am feeling utterly sorry for myself and my monthly infusions and complications of medication. When my eyesight dips in and out and I break a toe because I can’t fully feel my feet. When I find phantom bruises — deep and dark, purple midnight blue — scattered across my limbs with no explanation. When I can’t remember the day before because of the heat, the stress, the fatigue.
Lately I’ve put my tears on the shelf. My husband, who has always been the strength and steadiness in our relationship, is faltering under the crushing pressure. Maybe I shouldn’t have left my job, maybe I should have made different decisions. Maybe, maybe, maybe. What if. I am consumed by the worries of how I will get through the next few weeks when all that should matter is him.
I drove to get sushi for dinner – our first since giving it up for Lent. The sky was rain-washed, the sun a tangerine orange sinking gracefully in the sky. The greens were green, the blues were blue. The air felt fresh and full of life. The cows grazed lazily in the fields. Jim Croce’s “I’ve Got a Name” filled my car as it popped up on my iPhone’s random play.
I smiled. I sang along. I held tightly to the idea of this moment, this snap shot of why we moved here, why I left my job … what our dreams were and what they remain. I thought of how much we’d been through, how much we have left to face. I thought of my husband, working out diligently in our garage after a long day of work.
Life is neither fair nor easy. Life is a constant onslaught of things we believe we are incapable of overcoming. And yet … we do. We hold onto each other in the darkness, finding comfort in the people we love, the warm, strong touch of their hands. We breath deeply. We pray. We believe.
the FDA
Today, the hubs and I journeyed into Philadelphia for my quarterly appointment with Dr. M. Since I’ve passed the two-year mark of being on Tysabri, they have to monitor my levels more closely, because I have the JC Virus. (Little bit of info: the drug Tysabri elevates your chance of getting PML -which can be a fatal brain infection- if you have levels of the JC virus. Some people have JC, some don’t. They aren’t really sure how people get it/don’t get it, but it doesn’t have any affect on you … unless of course, you have MS and want to take Tysabri, which was the strongest drug for MS on the market until Tuesday. Anyway, in addition to checking the virus levels, organ function has to be tested and monitored, etc etc etc).
Essentially, it just means I get to have more scans and more bloodwork on a more regular basis. Who could refuse that offer?!?
Last Tuesday, the FDA approved Ocrevus (I have to use the marketing name, because the actual drug name is very long and I can’t spell it properly). Ocrevus is the first M.S. drug that has shown positive effects in progressive M.S. patients so for them, I am over the moon that it was approved. I have relapsing/remitting MS but mine was pretty aggressive when I was initially diagnosed. Dr. M had suggested switching me over to it last year upon its approval by the FDA so John and I were interested in what he had to say today.
First, Dr. M was intimately involved in the clinical trials, so he’s pretty close to the effects of the drug as well as getting it approved. Second, I am fairly certain that I drive Dr. M nuts. In a good way.
The bottom line was, after talking for a while, Dr. M, John and I decided that for now, I am going to stay on Tysabri. Listen folks, some of the possible side effects of Tysabri are pretty scary. Dr. M prescribed it for me three times before I actually scheduled my first infusion. He had to sit with me in an exam room for hours to convince me to try it. And at the time, I could barely walk a city block without a cane. My flares were coming regularly every four to six weeks. In retrospect, I’m not totally sure why I hesitated. But I can only really say that in retrospect. Knowing now that I haven’t had the scary side affects.
I’ve said it once … I’ve said it a million times. M.S. is a tough effing disease. It’s creepy and sneaky and a real bitch. I hope that as data comes in about Ocrevus that it’s all good. But I’m super glad that I’m staying on Tysabri for now. It’s been my savior. And yes, it’s scary. But sometimes you have to walk through the fire to get to the good stuff on the other side. That’s how I think about it. That’s how I have to think about it. If I fell into the what-ifs too much, I would drown myself. Instead, I try to know as little about it as possible. Here’s what I know ~ in the two years I’ve been on it, I have had a quality of life I thought was an impossibility. I don’t have to travel with an assortment of needles anymore. My disease is officially classified as ‘in remission.’ And I am so, so grateful.
mindset
When I started this blog (oh so long ago) my full intent was to have an amazing cooking blog. I was a bit obsessed with them at the time, and also, I didn’t really cook. As I’m sure I mentioned in my earlier posts, I worked in food service — so the need to feed myself was minimal. I just ate at work. I enjoyed those early blog days — finding recipes, and taking food photography (harder than it appears, by the way). Now, it seems to funny to remember a time when I didn’t enjoy putting together a meal.
Then January 21st, 2013 rolled around. And my whole world sort of — fell into chaos? This blog became a place I came to scream into the void (or at least, that’s how I thought of it). Not really diary (I don’t share everything!) but also a little without a direction. Whatever came into my head became what I wrote about. It was comforting, and cathartic, while also being amorphous.
Then, this year, I entered unemployment. I can’t call it retirement — I feel too young to qualify for that. I should be working, theoretically. But … and here’s where I get a little gun shy, because it’s admitting weakness, and I’m not a giant fan of that … I found in my retired unemployment that the things I thought were caused by my job (unending fatigue and ennui, cotton brain, a lack of focus) didn’t go away. I chewed on this idea for weeks. Maybe a few more days of rest? Maybe … maybe ….
I turned to my husband with eyes full of tears and confessed that I thought it had to be the M.S. With it articulated came the wave of paralyzing fear. I am only 37 – in how many ways will this disease continue to eat away at my life? He told me not to panic. That we would get through it all together. He said I didn’t have to go back to work until I felt ready. (Which – inevitably – made me want to go back to work yesterday).
Multiple sclerosis is a funny disease. It erodes your body from the inside, insidious in its invisibility. But we aren’t alone – those of us dealing with our own unique and debilitating battles have a huge community that we can tap into if we choose. I’ve surfed on some of the websites, I’ve read the conversation threads. Sometimes they are comforting — hearing someone else articulate something you thought no one would ever understand. A lot of times they are deflating. Like a very long, unending war that we will inevitably lose.
I’ve realized over the past four plus years, that my best, strongest and most reliable weapon in this fight is my mind.
Listen, the green smoothies are great. And I love exercising. It has deeply changed my quality of life.
But the Arkenstone of it all? Thought.
Dealing with medicines and doctors and all the wildly “intoxicating” things that go hand in hand with having an incurable neurological condition is made infinitely easier if you think about it in the proper context.
I learned this from my husband. A man who has gracefully handled his own cross — that of M.E.N. type 1 — since the tender age of fourteen. He smiles and nods and contemplates. He doesn’t panic. He breaks things down to their simplest components and examines each one with a discerning eye. He finds — even in the face of seemingly insurmountable odds — the shred of hope worth holding onto.
So in that spirit, I thought I’d give a little more shape to this blog. I figured — there are a bunch of M.S. sufferers out there, and people who love them who can’t understand. What if I write about the experience, and trying to see it through a filter of positive thought?
Because it’s easy to be glum and sad when afflicted with something no one can see. It makes you want to yell at people — shake them. Don’t you understand? I have M.S.!
They don’t understand. You look pretty normal to them.
But … but … But! I am grateful that I am still able to interact in a world without a wheelchair. I had a cane for a about a year — her name was Lydia (because, as I’ve said a thousand times, I felt that 34 was too young and I couldn’t call her a cane). It changes how people look at you, think of you. Speak to you. Yes, I am frustrated when people treat me as though nothing is wrong. But then, after a deep breath, I am grateful that I am healthy enough at this point my disease, that people don’t know.
Yes, having M.S. is hard. I have just as many bad moments as good moments. But M.S. doesn’t mean the end. It doesn’t mean that we are no longer capable of doing great things. It just makes it a little bit harder for us. And maybe … the accomplishment a little bit sweeter.
D5 Creation