If you’re reading this, you’re hearing this story for the first time along with all of my friends and family. It wasn’t something I wanted to share for a while. It wasn’t something I was comfortable with because I couldn’t yet see the light at the end of the tunnel or make sense of the way I was feeling.
The thing is, with a disease like MS that can seemingly take so much away from you, and too often things feel left up to chance, you constantly catch yourself thinking “why me?” I’ve worked in sales for the last 8 years and “finding your why” had been so embedded into my way of thinking that I couldn’t see outside of the context that I had created for myself that I had to “start with my why.” Sure, I get it, find the reason why you are doing what you’re doing and make it mean something to you or you’ll never succeed or overcome the obstacles in your way. My issue was that I wasn’t “doing” MS, it felt like MS was “doing” me. (Yes, the profane double entendre works here… and we’re keeping it!) “Why” was not the question I needed to be asking myself… it was really “how?” How can I overcome this obstacle, how can I learn to be okay with this? It’s okay if your “why” comes after your “how.”
When I had a relapse a couple years ago that left me unable to walk normally, unable to stand for long periods of time, unable to always feel when I needed to use the restroom, and when I started having a disconnect between my brain and my legs, I was beside myself. I’d literally sit outside on my patio and watch people walk by on our street and think: I hate you, I hate you and I hate you too! But I really didn’t hate those people, I hated that I couldn’t do what they were doing and it felt unfair. I was 27, I was “healthy” according to my insurance company’s physical assessment (a total “my mom thinks I’m special” moment) so why couldn’t I walk up the street without feeling like someone played a prank on me and stuck my legs in Jell-O like Jim did to Dwight’s stapler? (Non-Office fans, shame on you.) GIVE ME BACK MY LEGS, JIM HALPERT! MICHAEL!!!!
Eventually, the time came where my husband and I thought that I should buy a cane instead of just never getting off the couch again. Neither of us knew how long this would last so we were doing our best to adjust. We ordered a cane off of Amazon it and it came in the mail the next day. It was thick, heavy, black wood with a gold handle, way too tall for me (I am only 5’4) and nothing like what I had imagined. The cane was giving me Godfather vibes, not classy and sassy Selma Blair: Queen of The Cane Goddess vibes. It was all wrong. I was so against succumbing to the need for a cane, I didn’t really care that it wasn’t practical because I wasn’t going to use it anyway. Jack said we should return it and find one that felt right for me, one I would feel more confident using, but I told him that until such time as I had the need to wield a staff to part the red sea, or magically summons the powers of the earth to raise a draw bridge… I refused to use it.
Then, the falling started. It was almost comical how many times I tripped, fell, slid down the stairs, got dragged by a poorly trained 47lb pit bull when she saw something run in front of us that she wanted to hug with her teeth. I felt like I was in an endless Looney Toons montage where things kept falling out of the sky and crushing me or doors kept slamming in my face and knocking out all of my teeth. It became clear to me that either I would have to start being okay with needing extra help and having people know that when they saw me walking with a cane, or I would become a skid mark left behind in my dog Addie’s wake.
When something changes suddenly, something that you never could have imagined would change so abruptly, day one feels like the rest of forever. We never know how long our relapses will last and it’s anyone’s guess if those symptoms will be permanent or if they will subside. Luckily, rest, patience, and identifying the things that exacerbated my flare up all helped in aiding me to be back to where I no longer needed to use a cane. It took about 4 weeks to feel like I could trust that my symptoms weren’t permanent and things started feeling familiar to me.
I was able to get to the point where I didn’t want to have the cane by our front door anymore. It felt like a constant warning or an ominous foreshadowing of misfortunes that could one day be mine. I told Jack that I wanted him to take it down to the garage and he told me he thought that I should just throw it away since it upset me so much. ANNNND this is where I overreacted (something I NEVER usually do, wink wink.) Instead of hearing the beauty behind what Jack really meant… my insecurities and defensiveness, which clearly had no problem using their non-numb legs to LEAP to the forefront of my mind and out of my mouth, said “Why would I throw it away? What if I need it later? Just because I’m better today doesn’t mean my MS is just going to go away. If I could throw it away, don’t you think I would?” Yeah. I know. Ugly. She was a bit psycho, but we have since forgiven her because she was doing the best she could.
Jack explained to me that what I had gone through was traumatizing and that I had clearly associated a lot of pain with that ill-fitting cane (sorry for the Seussian rhyme there) and that even if I did need a cane later, we would just buy it when I needed it and it would be one that felt more like me.
I realized he was right. Keeping that cane, the one that felt like it was never meant for me, would be holding on to something that I didn’t need to at that point in time. I know I poked fun at Jack in my last post, it’s one of the ways I show my love, but I’d be lost without him. His “whatever we forgot, we can buy when we get there” attitude was something that I’d totally been underrating. It made me think about our Honeymoon to Italy and France. I planned for WEEKS what I was going to pack. I planned for rain and I planned for sunshine. I planned for if I wanted to do 3 outfit changes in a single day. I planned for swimming pools in the middle of winter and for if we somehow found ourselves at a formal event. You just never know, IT’S ROME, anything could happen!
Yes. Anything could happen, but what did happen was that I packed two massive suitcases full of things I ended up not needing. I wore one outfit a day and I repeated the same outfit probably five days of that trip. To my knowledge, there are no swimming pools in Rome, only fountains, and unlike in the movies I’d watched growing up, it’s frowned upon to go in them. To my credit, it did end up raining for one entire day while we were in Rome and so halfway through the day, we had to take Jack to buy some rain boots and a heavier coat but it was no biggie! I know by now you must be thinking, Suni, this story was about a cane… I think we’ve lost you...but I promise you, I am about to bring it full circle.
Jack was trying to teach me something… don’t over pack for a future that you don’t want. Travel as lightly as you can (emotionally and physically) … don’t stuff your luggage for the things that you hope won’t happen. Often times, it’s just more weight to bear and you never end up needing it. To this day, one of my favorite memories on our honeymoon was getting lost, ducking into stores to shop for some of the things Jack didn’t pack and now he has boots and a jacket that we will forever tie to those memories and for forgetting to pack rain boots, those memories are now Jack’s “why.”
By throwing away the cane that day, it allowed me to let go of planning ahead for a future I didn’t want to happen. I had to learn to give future Suni some credit and to trust that she will know how to pivot and adjust when things happen in the future that she may have chosen not to store solutions for in her garage several years in advance. If I do end up needing a cane again, I’ll buy it when I get there and it will have been because I needed it. I will make sure that I do what I can to make it fit me and think about how I am going to adjust when I actually need to.
While sometimes our pit stops on vacation aren’t as glamorous as shopping in Italy, I understand now that not always planning ahead isn’t that big of a deal and more often than not, we appreciate the lighter load we carry along the way when we don’t. No matter what struggles we face, no matter how much we have had to overcome, we still have our fears. This post is just to remind us all that sometimes we can throw some stuff out of our luggage we carry with us even if we may need it again someday.
Lots of love,
Suni
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