Marriage and Multiple Sclerosis

AKA How Becoming Disabled Was Surprisingly Good For My Marriage

Receiving a life-changing diagnosis or becoming disabled can help a marriage or hurt it. I’m grateful that my marriage got better because I know it’s not like that for everyone.

Cam had been working a ton back in 2018, which irritated me. As independent as I was, I still wanted to see my husband once or twice a month! I had no idea that he was working to pay off a trip to Mexico for my 40th birthday. He was taking me back to the amazing resort we’d been married, and he confessed the surprise in early October. I was planning a bunch of work stuff for November so he had no choice but to tell me.

I was mad at him for a little while because I absolutely HATE surprises of any kind. I’ve told him that before, but he didn’t really take me seriously because he loves surprises. I planned a surprise party for his birthday one year and I was thrilled to do it for him. I was elateded to see his face when he walked in the door. However, the thought of ever being the recipient of a surprise party? Third circle of hell for me.

Late in October, I started having neuro issues. Nothing was going to stop me from going to Mexico for my birthday, though!

The day after we landed in Mexico, things got really bad real fast.

I couldn’t walk without help and I was unable to move at all several times an hour. If I was already walking when my brain disconnected, the moving came to a strange, abrupt halt. I was having violent tremors, and at one point my upper body slammed onto someone’s table in the dining room without warning while I was on my way to get a plate of food. The consensus was, among the people who saw me having trouble, that I was out of my mind drunk and I needed to lay off the booze. (Not much of a drinker, for the record, and I certainly don’t get drunk.)

That first full day in Mexico, I had a full-blown panic attack right on the beach complete with hyperventilation and chest pain.

Completely panicked, my throat restricted and I could only make high-pitched wheezes trying to suck air into my chest. I couldn’t move or walk properly, I didn’t know what was going on or if I was having a stroke, and the thought of having some medical crisis in a country where I’m not fluent in the language was terrifying.

Eventually, Cam got me back to our room so I could spend the next several hours hysterical and sobbing before I finally fell asleep from sheer exhaustion. We were both having a great time!

He asked me what it felt like, when I lost the ability to move or speak.

I told him that I could feel when my brain and body lost connection but I couldn’t do anything about it, other than wait for everything to re-engage. I joked that I could practically see the blue spinning circle and the message: Connection lost, retrying.

He was concerned if it hurt when I lost the connection and I assured him it didn’t.

It just felt like if white noise was a feeling instead of a sound.

I felt like my life was over. I felt like I was over. Cam told me if I was dial-up instead of high-speed, that was okay. I informed him that it most certainly was not.

We decided to stay in Mexico because there wasn’t any indication that I needed urgent medical attention. I probably hadn’t had a stroke upon landing in Mexico, and even if I had it was too late to do anything about it. My symptoms weren’t getting worse from the day after we landed in Mexico, they stayed the same level of terrible.

Cam became my caregiver.

In our marriage, it was a real role reversal because I’ve been the one who takes care of myself, him, the household, the errands. our schedule, the pets, the cooking, etc. Now I couldn’t even adult. Cam had to help me get my shoes on and off, get dressed and undressed, walk to and from the washroom, in and out of the shower, and help me walk anywhere I had to go. He carried my plate for me at the buffet so all I had to do was point out what I wanted and shuffle along beside him. With one hand holding onto me, and the other holding my dinner plate, he had delayed meals the whole time we were down there.

He’d settle me in the shade on the beach or by the pool. (If you’ve met me, you know I’m the caucasiest Caucasian ever.) When I got too warm he’d walk me into the water. Being in the pool was easier because I could just stand in the water and hold on to the edge for stability. In the ocean, Cam had to keep a good grip on me to make sure a tiny wave didn’t take me out thanks to my new lack of balance. Luckily I don’t love being in the ocean (things live in there), I’m okay just being close to it.

We got really good at adaptation.

One time in particular, I was trying to walk to the washroom with Cam beside me. I started having a flailing arm and my gait changed to a very stiff, wide-legged lurch before I lost the connection completely.

Cam quickly grabbed a hold of me but my arm kept flinging until he could get hold of it. Some guy was walking by and he stared at me as he passed.

Cam gave him a dirty look and said, “Mind your business, she’s buffering.”

I laughed so hard when I was able to, a minute later. It became a running joke. Cam would tell people things like, “Don’t worry, she’s just buffering,” or “She’s installing an update,” or similar. Once, he told someone who was staring that sometimes you just have to turn it off and turn it back on again. I wonder if I looked like some weird statue when it was really bad?

Sometimes, if I was sitting or lying down and in no danger of falling, while I couldn’t move and he’d say, “Connection lost. Retrying in 3…2…1.”

Sometimes I didn’t reconnect in only 3 seconds but I thought he was hilarious. I was always aware of what was going on around me. I could hear everything, just couldn’t respond or react in anyway while I was disconnected. He had quite a few gems, so I wish I could remember all the funny jokes he had that helped get us through a terrible time.

If I’m talking to him and I say ‘disabled’ he says, “Alternative abilities.” If I say ‘handicapped’ he says ‘handicapable” and then we laugh. This whole ordeal has been hard for both of us, but it’s been good for our marriage. It helps when we’re able to not take serious issues anymore seriously than we have to. Dark humour is our default coping mechanism, having both been in EMS for so many years.

Only we‘re allowed to crack jokes about it though, nobody else better give me a rough time.

In Mexico, a woman was really mean to me in the restaurant one day while I was trying to walk by myself to the washroom and I disconnected by her table. When I got back to our table, I burst into tears and told Cam about the judgmental hag and what she’d said to me. He tossed his napkin on the table and wanted me to point her out immediately. (I didn’t, but it was sweet that he was going to have a stern word with her.)

It didn’t take long before Cam could tell I was disconnected almost as soon as it happened, so out in public, he’d come around to face me and pull me into a hug.  It looked like we were one of those gross PDA couples but he was really just keeping my limbs and torso from flailing about, shielding me from public stares, and making sure I didn’t fall. Luckily, I haven’t had a full disconnection since February, I’m just really slow and sometimes ‘lurchy’.

I’d rather not have disabilities, obviously, but it’s been good for our marriage.

Well, back in October I sure got a crash course in how to be vulnerable. All of a sudden, Cam and I started communicating about everything and I even got honest about my feelings. I know, right? Who even knew I had feelings? I never expected I would ever say the words, “I’m scared” out loud about anything ever in my life, but I was terrified, and it was good that I finally decided it was okay for me to acknowledge it. In the past several months, I’ve learned that I can share my thoughts and feelings with Cam and it’s never weaponized to be used against me. It seems suffering a debilitating medical crisis has helped me with my (well-earned) trust issues.

A few years ago, we had a hard few months because we were both under a lot of stress for different reasons and we each have our own problems with communication. Cam just wasn’t a big talker, and I wasn’t interested in talking about anything fuzzy or feelie or vulnerable. Plus, we both tried not to stress the other one out by keeping our ish to ourselves, which just caused the other one to get stressed.

We entered a rough patch back then because stress made us pull away from each other, and my default mode has always been self-protection. We just didn’t talk, and we even got into a few big arguments.

The funny thing is, the big arguments were never about big things, because we didn’t even have big issues!

Other than we’re both ridiculously stubborn and we don’t like to share our problems or stress with others. They were just snippy silly arguments over petty things, like who unloads the dishwasher more or the fact that I don’t fold laundry.

We eventually worked through all that, and what helped was the realization that it’s never me versus him, or him versus me, it’s us versus life. It’s us against the problem. Remembering that we’re on the same team got our marriage back on track, and I’m glad we were on solid footing before my brain broke.

In the last six months, we’ve become even closer than we were before.

We’ve been together (off and on, long story) for twelve years but only married for six and living together not much longer than that. But we’ve now reached a level of closeness where we can communicate just with telepathy and facial expressions. It’s pretty great.

We talk more now, too. Like about feelings and stuff, which is new for me but prioritizing communication has been good for our marriage. We decided recently that when it comes to our marriage vows, we’ve totally nailed ‘in sickness’ and ‘for poorer.’ I hope some day we get to try our hand in health, for richer.

Disability definitely sucks but if it’s going to happen, it helps if you have an amazing partner.

Some days, my marriage to a good man is the only thing I can be grateful for. (Things haven’t been easy for months and they don’t show any signs of becoming easier anytime soon.) I thought only once how different my life would be if I’d become disabled with MS while I was living with an abuser. The thought unnerved me enough that I shut that door in my brain and haven’t been back since.

Over a decade ago when I was breaking up with him for the third or fourth time, I never would have imagined that he’d be so incredibly supportive or that we’d end up closer than I’d ever been to anyone. I don’t like many people, only about five, but he’s definitely my favourite 😉