Late summer to early fall has been a significant time period in the last few years of my life. Last year was my official diagnosis with Multiple Sclerosis. This year has been landing the job that changes me entire career path: I am entering the second half of my training period before I begin my job at the other office. I am shaking with both nervousness and excitement as they prepare us to enter a sector that requires maximum effort in helping others live their best lives. I couldn’t have asked for a better early birthday gift as I inch towards my thirties.
In the last year, I have matured while learning to embrace the inner playfulness I bury deep within. I always thought no one would take me seriously if I joked and teased but I was wrong! I have learned to let my personality play out naturally, and allow my maturity to show in the way I handle social situations and personal problems. I am learning to allow myself the best of both worlds; let laughter dictate the day, and have my love for life melt the stress away. I am learning to let go of things that do not serve a purpose in my life and act with intention.
There isn’t much more I want to say. Just that I am proud of the woman I am becoming. I have messily waded my way through my early twenties and have come out on the other side with significant scars. But I carry these scars as reminders of what I had overcome. And soon, I will be entering my thirties with as much pride and grace as I can. Despite ongoing challenges, I have more faith and greater love for the life I live.
In this day and age, being single is now harder than being in a relationship.
It appears that we grow up in a society where emphasis is on the career we pick, the life we capture on our social media accounts, and the (high) salary we earn. And if we cannot obtain these things, we are judged for them: too lazy, fearful, unmotivated. I don’t deny there is a balance on staying motivated and working hard versus being overly ambitious and risking everything for the goals. But do we judge too harshly for other people’s failures and successes? Is the element of kindness and compassion lost in this world of ambition and hustle? This over-emphasis on this status quo of a lifestyle has meant we lost our innate ability to connect with each other. We become so good at selling ourselves, negotiating and debating. We forget what it means to respect our differences in opinions; what it means to connect with no other ulterior motives and simply share knowledge, experiences, stories. Our drive to achieve supersedes our innate ability to connect through love. Do we remember what it means to build a healthy relationship (whether romantic or platonic)?
Being 28, and still simply “dating”, I can see the struggles of reaching a phase in my life where the friends around me are marrying or starting families. I am one of the rare “singles”. The struggle is the lack of acceptance in being single. It becomes such a dangerous slope when envy dictates my wants and suddenly I’m rushing a relationship that is nothing but perfect. I’m rushing it and not respecting myself or my partner’s journey–and our journey; I lose sight of the importance of acceptance in myself and where I stand in life. Joy does not exist in life through comparison. We must learn to accept our own marital status in life so that we can focus on self-love, self- care and growth. Shut out the murmurs of others and begin living the life we are destined to live. We all are on such different paths; we must respect each other and ourselves to understand why we are where we are. And if we are unhappy with our positions in life, be able to push past our fears and learn to embrace vulnerability, and then make the changes necessary for a brighter path.
None of this is an easy feat. I know. But I want to continue to remind myself that I cannot rush the process of life. Honour my failures to help me grow, allow respect and kindness to follow my hustle–because let’s be real: I’d rather keep my friends to celebrate my successes with them, right?! I want respect to rule my heart and vulnerability lead the path to new opportunities and exploration.
Following my relapse, I went to my follow up appointment with my MS neurologist. I’m past the point of feeling nervous leading up to the appointment. However, every time I am in that chair among his piles of paperwork I am reminded of this lifelong battle I have ahead of my life. It’s a strange feeling. I never thought I would be the one to be carrying this incurable disease. It’s been a year but I am still learning how to cope with the various symptoms that come and go. One thing I am grateful for throughout this whole journey is my partner. He accompanied me today and sat by my side like a trooper. He asked questions, he was attentive and it felt extremely comforting to be supported.
Unfortunately, the neurologist wants another MRI done (fairly urgently it sounded like) to see whether there are new lesions. If the results from the MRI are less than ideal, we will need to look at more aggressive treatments–whatever that means. On one hand, I feel discouraged and another part of me feels extremely determined to conquer my MS and all the symptoms as gracefully as possible. Moments of weakness fall upon me and all I want to do is cry because I feel too fatigued to hold my own chin up high. But, these moments of despair are balanced with courage and perseverance.
I grew up a fighter and I will continue to be.
There is a part of me that is terrified of the bad news. And it’s really shitty when I have no way to predict how the course of this disease will progress. But I will do all I can to protect my body and nourish my soul. Luckily, I am privileged with great opportunities. I owe my partner a lot for his attention, love and support. Life gets busy for him but he’s always made time for me. I am so blessed for having him in my life. He is my partner and my best friend.
When I was initially diagnosed, I struggled with learning how to inform people of my MS. I was afraid, and kept it as secretive as possible. As I learned more about the impact MS has on my life, I began to identify with it more as a part of who I am. This “bonding” or acceptance of this separate entity being so closely dependent on my health is something I’m trying to healthily nurture. For now, I have gotten past the initial bit of telling of people that I live with MS. But with my first hard relapse, I’m now struggling with a new (but related) subject: navigating a discussion about my MS.
My close circle knows that I live with MS. But when I am coping with a relapse or pseudo-symptoms, I’ve found navigating this discussion to be a challenge. Many are afraid to ask questions to better understand the situation, and some quickly jump out of the conversation because it’s just too challenging or awkward. I understand how hard it can be to gracefully maneuver such a heavy-loaded conversation, but I am finding that this fine line between wanting to sound sympathetic but not like an uneducated fool is unnecessarily HARD. While I try to dance this dance with many individuals, the one thing I am noticing is that I must take the lead in the conversation. People often aren’t sure what to say and thus, have nothing to say. I need to demonstrate that it is okay to ask questions and simple fact-finding is not offensive.
I’m hoping these conversations will get easier as I speak out more and build the correct conversational foundation for others.
Humidity kicked my butt this weekend. A lot of dragging my feet around and sleeping in or laying around to catch a breath. But all this is to say, this is my first big relapse where it’s inhibited my ability to cognitively function at a level in which I’m used to. One year since I’ve been diagnosed and the smallest of setbacks ever since–I guess I can’t complain.
I’m still understanding what Multiple Sclerosis means to me and I think that’s an important distinction from the general term. I’m learning how to handle the humidity on my own terms. I’m figuring out how to reset my physical and mental state, and be okay with these setbacks. I’ve been discussing workplace accommodations and how to formalize the exemptions of such sick days; I have been easing my soul into a place of acceptance–that it’s okay to let laundry pile up, or to vacuum another day,
It’s okay, it’s okay.
The mind is definitely still shaky, the brain groggy from this summer heat. It’s a price to pay when I’m trying hard to enjoy the small moments. Waking up to a blank slate. Making plans on the fly…it’s something I rarely do but what a relapse is helping me recognize is that productivity can occur on a moment-to-moment basis. Nothing needs to be planned to have order in the day. We fueled our bodies with scrumptious dim sum, then headed to Home Depot to purchase paint for the garage. It was nice to just be there with them. Then they dropped me off so I could go about my day. Just like that. The afternoon was set up so that I could move slow, and not feel pressured to do all the things. I changed my sheets, sprayed them with my favourite Sage scent, and tackled this embroidery doll project.
Sometimes, I have to remind myself to stay grounded. Don’t be greedy for more. Life is to embrace the smaller moments.
After experiencing symptoms for over a week I was finally put on a corticosteroid treatment yesterday; a 1000mg dosage each day, for three days. The decision to choose a steroid treatment came so abruptly. The clinic called the day before to ask if I could come in for a 9am appointment. I went through the standard neurological examination and the option was presented to me. I was not fully prepared to make the decision on the spot but it felt like the only solution–besides waiting for the symptoms to go away. Anyways, my narrow veins didn’t help and after a wrong poke (see huge ball of gauze) and 30 minutes of wiggling the tube, the steroids finally flowed through. Nearing the end, I felt the most uncomfortable ache in my left arm. I felt drained despite doing very little. After the intravenous treatment, I went straight to work. I was fatigued all day, I felt strange and dazed.
After work, I met up with a friend for dinner. I probably shouldn’t have pushed myself but I wanted to try. By mid-dinner both my feet were experiencing such painful tingling that I couldn’t focus on anything else. We cut dinner short and we called a ride home. I was in near tears because it was so excruciatingly painful. By the end of the evening, I had to use a cane and my mum’s chairlift to carry me upstairs. It was terrifying to go through such an experience . As I laid in bed last night, my feet felt like they were on fire. I took a Zoplicone to help me slip into a deep slumber…only to be awoken by a severe headache at 1am. I took all my strength to get more water and take a Tylenol. Luckily, the headache subsided eventually and I was able fall back asleep.
I decided to finally give myself a break and stayed at home today. I think it was a good decision as my left hand is very tingly and my feet are still tingly (though not as severe). Energy seems better despite the lack of sleep…but perhaps that’s the steroids kicking in. Either way, I hope things will keep looking up.
On another note, I was using a cane to walk around the neighbourhood. I purchased a couple items from Shoppers Drug Mart and I received a senior’s discount…LOL.
I still have my travel pictures to go through…hopefully I will post them soon.
Soft glances at you, as you nervously stare back into my eyes. You were hesitant to have your bowl taken away because you didn’t want to make it awkward for me to eat alone (you were considerate), so that you did not just stare at me. You jokingly said you did not want to sound creepy because you did enjoy looking at me. I laughed.
We walked out into the warmth of the sun. It was such a beautiful evening and we decided to walk. We walked side by side. We were close to City Hall when he placed his arm around me—for a split second. We continued walking when we reached the stairs leading up to the green rooftop of City Hall. We hung along the railing, looked out into the open area down below. We kept our distance. I think we were both shy. We sat on a bench and laughed. After some time, we decided to walk to our next unknown destination. Along the way, you let me know little urban planning tidbits, pointing out buildings and statues.
We reached Sin & Redemption where we sat by the window
and watched the world go by. You offered
your beer for me to try. I took a small sip. We sat in silence. I learned about
all your life, passions and it was fascinating. You love your life. I can tell.
It’s inspiring. Past the natural nervousness, I felt relaxed and full of life.
You told me I was funny. You told me I looked cute when I was tired.
It was chilly by the time we left. It was a crisp evening and
we slowly walked to the subway station. As we walked, we were looking up at the
sky. It was pitch black and we could barely see the stars. We stopped to look
at the three stars we could see. As we admired them, I felt you come closer behind
me. I slowly turned and you kissed me ever so gently. It had felt so long since
I’ve felt such an innocence to a kiss. Something that felt like we had to
handle with care. He placed his arm around me as we continued to walk. It’s as
if we’ve done this forever.
On the subway platform, we quietly waited for the train. You came closer and suddenly kissed me on the forehead. I leaned on your chest for a little as you placed your chin on my head. I felt safe. I felt admired. It was a feeling I had longed for. My heart had been stretched in so many directions the past few months. But tonight, I felt free and my heart was protected.