the beginning of things

I don’t come here as routinely as I should — but when I come, I find myself circling back to the same ideas: living with MS, living life and who I am.  I am fascinated with life’s path, God’s plan — how I have become me.  I have moved and changed and morphed so many times, and often, there have been no constants to compare the passing of time.  I am enthralled with the permanence that now exists in my life and how it has shaped me, but also how it has helped frame my life.

The hubs and I have lived in our apartment for nearly six years.  Surprisingly enough, that’s the longest I’ve ever lived in one place.  I think back on our relationship, the struggles we’ve faced, the triumphs we’ve experienced, the moments of laughter and the quiet despair of the tears.  The day we were married and we celebrated in our back yard.  The day we brought Lucy home.  The day I was diagnosed with  MS. The day we bought our new home.  This little apartment is embedded with our joint life.  It hurts my heart a little to think of leaving it — even though the idea of owning our own space is thrilling.

When John and I found this little space, I was unemployed and he was in a job that was slowly strangling his soul.  We had weeks when we could barely afford groceries, let alone gas for our cars.  Every piece of furniture was a hand-me-down, a dumpster dive or a piece from the salvo.  We wore clothing we’d owned for years.  But in many ways, we were insanely happy — being together, falling asleep each night to the rhythm of the other’s breath.  Slowly we changed jobs, we worked doggedly at paying down our (massive) debt, we bought new clothing, we were able to shop at regular grocery stores instead of discount ones.  All those milestones are marked in our memory of this apartment, and how it allowed us to stabilize ourselves over the years, and eventually (dare I say it) prosper a little bit.

Our first year was a rollercoaster ride of transitioning out of the restaurant business — learning that we had to feed ourselves, budget our paychecks, learn to cook.  Somehow, we figured out how to be semi-healthy, and took steps (as we got into a groove) to better our eating habits, better our life choices.  (I will completely admit that the addition of our furry little munchkin Lucy also pushed us in that direction fairly rapidly).  

I think back about our evolution — from hot pocket breakfast sandwiches to green smoothies, and I’m sort of amazed.  Who we are today, how we live our lives, the choices we make — it all barely resembles the two kids who moved in together after a year of dating.  And yet — we’re still the same two people who fell in love.  The same two people who were convinced we’d met before — only to discover (after much discussion) that we had not.

Kind of goes back to the idea of God’s plan.

Anyway — maybe all of that is just the idea of growing up, stepping into the big boots and trodding the rough paths of life. And in the end, I am most grateful for one thing:  I couldn’t have a better partner (and the fact that I have one at all is also something I am eternally grateful for).  He has been my strength in the darkness, my laughter through the tears, my most precious best friend.  And together we’ve cobbled together a very happy life.  We are not immune to life’s hardships — no one is.  And our battles come in all shapes and sizes and forms.  But we soldier on together.  And I think, as we both sit tapping away on laptops with Avatar playing in the background, that we have been traveling on an amazing adventure together, and I am deeply grateful for his companionship.


I often feel that my brain is full of things to share, but my body is too exhausted to make the effort.  I like to chalk this up to MS, and not inherent laziness.

Life is ever-changing, amorphous.  It gently pushes you down different paths merely because of circumstance.  And choice.  Of course.  We make the choices, even if we don’t realize it.

When I was diagnosed with MS, I felt relieved.  That’s the truth.  I knew something was wrong and the not knowing was a dark rabbit hole of fear.  Knowing — while shattering — made things so much more clear.  And I was able to choose what kind of MS patient I wanted to be.  I didn’t want it to define me – despite the fact that it does define nearly every moment of my day.  I recently read a blog post by a Lupus sufferer called “The Spoon Theory” and it certainly helped to define the immense ways that a chronic condition infiltrates your life.  But … that being said, or rather, that being acknowledged, having a chronic condition remains only one part of who I am.  And remembering that, holding onto that, is more important than anything.

This year, the man and I decided to go big for Lent.  We gave up drinking (something we do often, and I fail miserably at) and eating meat.  We successfully made it through forty-six days without alcohol or meat of any kind (meaning red meat, chicken, pork, etc).  We did eat fish, but surprisingly not as much as I anticipated — although we did enjoy sushi as per usual! And what I found — much to my chagrin — was that I felt a lot better.  Some issues that I had just accepted as part of my new normal subsided.  And I began to feel good about treating my body so well.

That’s the thing.  

When one of my friends had a child, she and her husband said they weren’t going to change — they were going to continue to live their life exactly as they wanted to, they were just going to do it with a child.  But inevitably things changed because that’s the nature of life, of evolution.  When I was diagnosed with MS I made the same declaration — I wasn’t going to give up things i loved, I was going to live life exactly as I had been living it.

But that’s impossible.

And as I ease into my reality (something that has definitely taken time and soul-searching) I have found that certain changes are inevitable.  And some are necessary.  I miss running.  I miss it, and I mourn it but I’m tired of feeling sorry for myself because of the loss of it.  It’s taken me nearly two years to get to that point — two long, hard, discouraging years.  And in those years, I’ve begrudgingly made small changes.  For the most part, to get through each day in an easier fashion.  I initially didn’t understand people who drastically overhauled their lives — how did they just make a choice to change everything about who they were as people?  I could do the green smoothies, the vitamin D — but I drew a pretty permanent line there.  Going back and slowly redefining that line has been both character building and humbling.

So will I miss eating meat?  Yes.  I love a good steak, a juicy burger.  But will I miss how it made me feel afterwards?  Not just initially, but for the few days it takes my body to digest meat?  Not really.

And I guess I have to admit the same for alcohol.  And until I figure out how to enjoy things in tiny moderation, those are the choices I have to make.  Just as parents cannot un-have a child (nor would they ever want to!) I cannot un-have MS.   But life can still be beautiful for me — beautiful and full of adventures and good food and lemon-flavored sparkling water.  And I’m finally getting to be okay with that.