Friday, February 14, 2020

MS and Relationships

(I wrote this in November 2018 for a third party...re-posting here for valentines day because it still holds true.)

I had had Multiple Sclerosis for 6 months.  It was a hard 6 months, with months of hospital stays and relearning how to walk, talk, use my hands/arms, and navigating a new life.  We all needed a break.

My brothers, dad, and long-time boyfriend had decided to ride the Bike MS: City to Shore ride, that went from Philadelphia area to my childhood home town of Ocean City NJ.  It was a true expression of love as they were to ride over 100 miles in my honor and fight with MS.  

It was a blast of a week and a joyous occasion.  And yet, it also was a realization that I was not getting better - that this MS thing was big, and life consuming. It was a realization of what now was to be real life. And that Sunday, one of the main men in my life, my boyfriend, realized it was just too much and left.  This man, whom I had committed myself to making a life with, someone who I had built a future with, drove away that weekend without me. 

I couldn't blame him, and I still don't today.  Because he fell in love with the career driven, power house of a boss babe.  I wasn’t that girl anymore. I had retired from my career, I was a power house but in overcoming hospital stays not boardrooms, and I literally had to depend on someone for everything.  MS had poisoned what we once had. He left saying “no one will love you as much as I do”. And I believed him because I knew his love for my ran deep; but apparently, not MS deep. 

How do you come out of that?  How do you have the one person that knows everything about you to your core, walk away because of what life has brought upon you, and survive?  

For me, I had to refind my worth.  I spent a long journey finding out who this new me was.  And I had to love this new me: because if I couldn’t love me, then I couldn’t expect anyone else to.  

Once I felt confident and settled in my relationship with myself, and knew what I brought to the table, I decided to give dating a try.  Dating in today’s world is like, an adventure. I was living in a city where I didnt know anyone.  Social life dating was not really an option in meeting someone. So, online dating. Cute right? Ugh. Online dating is hard enough. But when you have a visible disability, it’s even more intense. 

Do I show a picture with the mobility device?  Do I put it last in my pictures? Do I mention it? Do I not say anything and surprise them at first date? Do I tell them after we set up the date?  

There’s a lot to consider.  And I did it all. Mostly as an experiment to see what would be the most engaging.  My research was inclusive. And, let me just say, there are a lot of rude and weird people out there. 

Then there were some good ones too.  One personally that I started a relationship with while I was full time in the wheelchair and undergoing chemotherapy like treatments.  He even survived an unplanned surgery. But our lives were too different to grow anything substantial and I think personally, that’s what made it work.  I didn’t have to ask the question: can you do MS for life? Because I knew there wasn’t a shot at life.  

I dated with decisiveness.  There were no games; I had no energy for games.  I was upfront, I was me, and I didnt play by the rules.  And perhaps that turned off some potentials but it also saved me from kissing a lot of frogs. 

Eventually, I got to the point where I decided I needed to just calm, it, down.  I shut down all my dating apps. I stopped looking for love in a man and instead, just started living.  I started traveling, I started recumbent cycling, I started living a full life just for me.  

And when I saw my future, I saw it with just me.  Not because I thought I didn’t deserve a relationship; but more because, if I'm being honest, I was still bruised from that experience of being told I love you, but not with MS.  I was happily single, but in twisted sort of way.  

This was my mistake: something that I hope by sharing, others can relate to and learn from.  Because telling yourself you are not worthy of love with MS is such nonsense. You are worthy of love NO MATTER WHAT!!  No matter what chronic disease, no matter what scars, no matter what disability. Sure, the dating world may be a little bit more difficult to maneuver.  But you are worthy of love. 

I worked through this myself.  I started to see that MS didnt matter when it came to loving me; what mattered was who I was as a person, how much I loved, what kind of partner I was.  MS was just a thing about me. Granted, a BIG thing, but it wasn’t fully me.  

One June, I was in a wedding.  I was a bridesmaid to one of my childhood friend’s.  That’s where I met him: he was the best man. We had met the summer before but that night, the night of the wedding, it was something out of a fairy tale, if you believe in those.  We exchanged numbers (and really, if I can be cheesy, we exchanged hearts) and we have talked and been together every day since.  

This man only knows the MS me: and he loves it.  Not just like “I love you” loves it, but supports it, engages it, and honestly, if I can gloat a bit, is almost in awe of it.  He sees my power, he sees my strength, and he sees my gifts. He supports me, both in my health endeavors and basic life endeavors, and yet doesn’t treat me like a patient.  He just treats me like me.  

The first time I asked him, “are you ok with a life with MS”, his response was simple “if it’s with you, why wouldn’t I be?”.  MS was always part of that package and he signed up for all of it.  

Dating someone with a chronic disease like Multiple Sclerosis isn’t always a breeze; it’s unique.  We both know that I’m going to need more special assistance. We both know that I’m going to require more adaptations and flexibility.  And yet, we both know that I can provide him with the emotional support and strength he may require. We both know that I can make him laugh.  We both know that no matter what the day brings, good or bad, our favorite thing to do is just to be together. And this can be done on even the worst day or the best day: we can be together.  

In October of this year, my love asked me to be his forever coffee date.  We are planning our next chapter of our love story now, a wedding in 2019, and it’s all beautiful.  All the past relationships: the good, the bad, the ugly, the really ugly...they all led me to this. They all led me to him.  And it is good.