Today is the anniversary of the day I’ve compared every other day to for the past 364 days. It’s the day that has never been too far from my mind. It’s a milestone, an achievement, and a celebration but it’s also a source of anxiety and burden that I’ve been working so hard to overcome. My emotions are jumbled as waves of gratitude and enthusiasm shift to turmoil and anger and frustration. Today I am thankful for so many things in my life but today I also grieving for the things that I have lost. Today is the one year anniversary of the day that I was diagnosed with MS.
At the time, I thought that it would forever be my worst day, my hardest day but the days, weeks, and months to come would prove me wrong time and time again. I didn’t know that my hardest days would be the ones when my fatigue was so bad that I took the accessible elevator at work, napped in a conference room at lunch time, and struggled just to make it through the day. I didn’t know that my worst days would be the ones when my brain couldn’t make the necessary connections and I forgot how to use the kitchen faucet or stove and had to ask for help. I didn’t know that my most frustrating days would be when my hands didn’t work and I couldn’t button my pants, zip my coat, or grip the steering wheel in my car. I didn’t know that my scariest days would be when my vertigo got so bad that I felt drunk and couldn’t walk without holding onto something, yet had to pull it together and act like everything was OK and give a presentation for work. Diagnosis day wasn’t my hardest day but it’s a day that will always hold a particular place in my heart because it was the day that everything changed. I will probably never be able to accurately describe how receiving that diagnosis felt but I can describe how it changed me, sometimes for the better and sometimes for the worse.
For as far back as I can remember, I’ve always been a very independent individual. I didn’t want to put my future or my well-being in the hands of anyone else because I didn’t trust anyone else to know what was good for me. I’m not sure where or how I learned that, but it was something that stuck with me. I knew my own capabilities and limitations and I knew that if I depended on no one but myself, I could better control the outcome of situations and that sense of control gave me great comfort. So, while I had friends and boyfriends, and even significant others that I shared a home with over the years, I had never turned everything over to anyone else. I never gave up control of anything that was controllable, whether it was something hugely important like my finances, my education, and my ability to earn a living, or something insignificant such as the way the dishwasher was loaded or what kind of cereal I bought. Regardless of what it was, it was always important to me that I was able to control it.
Uncertainty and change were stressors for me and for the most part, I had done a pretty decent job at limiting disruption. I was pretty content with the level of control I had over my life up until MS came into the picture. I had no idea just how much I thrived on my ability to control things until it started to slip away. As the symptoms started to show up and I began to lose the ability to predict the outcome of various tasks and events in my life, anxiety flooded into every crack and crevice of my being and eventually took over…and I let it. It was my coping mechanism. I controlled what I could for as long as I could and when new symptoms or obstacles came up, I went into autopilot mode and just worked as best I could to overcome them. I didn’t ever really stop to think about how I actually felt about any of it until that day when my doctor said the words.
Panic, fear, and a sense of defeat were the first emotions that I remember feeling as I hung up the phone and turned to tell my husband. I remember feeling surprised that I was feeling anything at all because it was exactly what I had expected to hear. It was what I had known was wrong with me from the very beginning of the whole ordeal. It was what everyone had been telling me wasn’t going to happen to me. It had finally happened. I had a confirmed diagnosis and suddenly every emotion that I had buried somewhere deep in my body over the previous year came pouring out and I cried.
It wasn’t the first time that I had cried over my situation but it was the first time that I cried out of grief. I cried for everything that I knew I was going to have to one day give up and everything that I knew I would miss out on. I cried for all of the hardships that I knew would come and all of the struggles that I would face. At the time, I didn’t know what those struggles would look like but I knew they would be there and I knew they would be tough. I knew that I would never wake up and be the old me, the me that had two working hands, two working legs, and a brain that rarely let me down. I grieved for that loss and all of the losses that were yet to be revealed. And after I grieved, I laid there with my head on my husband’s chest and began to envision my new life and what it might entail.
I knew that things would change but I had no idea that I would change right along with them.
The next few months were hard. I had home steroid infusions and new medications to deal with. I had frequent doctor’s appointments to keep track of and lots of questions and research to occupy my brain. I barely thought about anything else and it was so overwhelming. When I wasn’t busy with keeping my appointments and records in order, I was trying to figure out a better way to put pants and shoes onto legs and feet that didn’t respond to what my brain was telling them to do. I was contemplating how to shave my legs without falling down in the shower. I was looking for new routes to work that required fewer steps. I was doing everything I could do to keep up with life and as I started to get further and further behind where I wanted to be, I realized that I couldn’t do it alone. I could no longer rely on my own body and mind to get me through the day and I began to accept the help that others were offering me.
I started with the small things like asking my husband to open jars for me or asking co-workers to help out with projects I had previously taken on by myself. As I got used to the idea of having others help me with things, it started to get easier to ask. I started asking a friend to join me on afternoon coffee breaks in case I stumbled or needed help navigating the escalator. I started asking my husband to go to the grocery store with me to help push the cart or run across the store for me to get the one thing I forgot.
As I slowly gave up control of the physical things in my life that I had taken so much pride in handling, I also started to give up control of the intangible parts of my life as well. I realized that I didn’t always need a plan or that figuring out and preparing for every possible scenario wasn’t as important to me any more. The world would not end if the paper towel roll was empty and I didn’t have another one ready to replace it. It could wait. The more things waited, the more time I had to dedicate to things that I actually liked to do. It was hard at first to let go of the things that I sought to control but the more I let go of, the easier it became, and the more relaxed I felt. As I disconnected from the tasks that used to made up my life, I started to feel more connected than ever to the people in my life.
When I stopped looking for things to occupy my time and started to fill the void with laughter and conversation, I found something that I’ve never had before and I wouldn’t trade it for anything, not my ability to walk without thinking about it, not my ability to use my right hand like I used to, and certainly not my ability to plan and prioritize like a boss.
What I have found is invaluable. I don’t know what “it” is but I know that it is good for me and it is good for the people that care about me. As I reflect back on all that this past year has taught me, I can’t help but be grateful for the lessons that I have learned. Today is not a day that I imagined would ever happen to me, but it is a day that I can appreciate because of what it has caused to happen to me. I don’t believe in fate or pre-determined destiny but I do believe that the choices we make and the paths we take in life are directly related to the lessons that they seek to teach us if we’re willing to listen and I am finally listening.