On Anniversaries II

13/12/2014:

“I hate the fact you smoke cigarettes
But girl let’s just stick to kissing and work out our differences”

I rapped along to Jaden Smith, as my head bopped to the beat and my fingers clacked on the keys. My final essay on Environmental Planning was coming along surprisingly well, despite the upset stomach and foggy brain. Jiggling my head back and forth to clear the wooziness, I-

5 seconds later

My head reflexively snapped back as I came to, suddenly realizing I had blacked out for a few seconds. Something was wrong. Something was seriously wrong. The walls caved inwards and started shifting around me, as I batted my eyes and struggled to keep the weight on my eyelids at bay. Jiggling my head back and forth to clear the wooziness, I stood up. The walls continued to spin as I focused on inhaling and exhaling. Inhale. Exhale. Inhale. Exhale. I need to lie down.

Cramming my laptop and books into my backpack, I stumbled out of the basement, crashing into several walls and corridors along the way. As I climbed the staircase, I was literally taking two steps forward, for every one step back. My brain and body were out of sync but I had one mission to fulfill. Get back to my room.

5 minutes later

Propping my body up by jamming my right hand on my door frame, I took the next five minutes carefully maneuvering my rickety left hand to open the door. The door swung open. I tossed my bag onto the ground and my body onto the bed. Everything faded to black.

14/12/2014:
Missed Call from Philomena

Missed Call from Philomena

Missed Call from Philomena

Missed Call from Philomena

Philomena
Please pick up your phone!!

Mugabi
I’m sorry I’m not feeling well enough to come to the phone right now but I can text?

Philomena
Oh my god!!!
I don’t even know what to say!!
I’m so sorry!
I’m glad you’re okay, but now I’m worried
If you ever need ANYTHING, please let me know!!
I know I’m far away, but know I love you so much! You’re like the brother I never had.

You’re family to me. How have the doctors planned on monitoring this?

I’m literally shaking right now. So many questions. What? With who? Any triggers? What’s happening? How are you mentally/emotionally/spiritually/physically?? Are you sure you’re fine talking about this over text? :((((((((((

I so want to give you a hug right now!

Mugabi
I’m going to type out the very long story, this may take a while but is WAY better than talking

Philomena
Are you 100% sure that you’re fine with typing out everything???

Mugabi
Yeah, I’m fine typing.

So, I was working on a paper for my finals and I started feeling my stroke symptoms resurging.

This is the FIRST TIME EVER in my life that I have felt those exact same symptoms. It was beyond terrifying. Terrifying doesn’t do it justice. I’ve told you time and time again, that the only two things I’m genuinely sensitive about are:

1) having another stroke
2) any more of my immediate family/best friends passing away

Those are the two things nobody ever steps on or I will snap. Those are my two greatest fears in life. Those are the two things that I fear even more than my own death. And one of those fears came true

Philomena
I love you.

Mugabi
I love you more

Philomena
Take all the time you need typing up this long story. I’m here for you and always will be.

Mugabi
Thank you.

So, I was sitting down in the basement of my co-op working on a paper, when I felt my stroke symptoms resurging. I was freaking out! I mean I felt like I was having another stroke! I decided to pack up my stuff and head up to my room to lay down.

There is one other detail that’s important… I hadn’t taken my medication in like 3 days. I was super busy and hadn’t gotten around to picking up my medication refill. I really should not have done that. I had literally no idea what would happen to me if I went this long without my medication, but I had a feeling it was another stroke so I took aspirin (which is sort of like a weaker version of the blood thinners I’m on) and lay down and tried to rest. While trying to rest (but in reality, hyperventilating and panicking,) I started flashing back to my childhood stroke and remembering everything I felt then that matched up to how I was feeling now:

1) one of the worst headaches of my life: check
2) heaviness of right limbs: check
3) high fever: check
4) tingling and numbness: check
5) feeling weirdly hot in some places: check
6) dizziness: check
7) lack of balance: check
8) right side of my face drooping: check
9) feeling lightheaded: check
10) loss of ability to speak: Hmmmm

I could still speak! The last time this happened I was screaming “It’s Nadin’s turn” but no sound was coming from my mouth. Taking deep breaths, I decided to test out my voice.

“Hello” I timidly said and what happened next was hella weird. My voice wasn’t gone, but, it felt like I was a ventriloquist.

“Hello, my name is Mugabi Byenkya and I am talking to myself right now” I more confidently proclaimed.

Hmmmm… still weird. I was talking but my voice didn’t sound like it wasn’t coming from me. It felt like it was coming from the wall on the opposite end of the room…

Something was definitely wrong. So I grabbed my medicine, grabbed my roommate and went to the emergency room. In the emergency room, I got jabbed with a million and one needles, had doctor after doctor come in and talk to the ‘fascinating case’ and had a CAT scan done.

6 hours later, most of the symptoms I was feeling had significantly reduced. I was feeling back to normal, albeit sleep deprived. I had been administered an IV and rested. After 1 more hour of observation, the doctors came in with a final diagnosis. They said I had a TIA (Transiennt Ischemic Attack), also known as a mini-stroke. They said the TIA was definitely not caused by me not taking my medication, phew!

However, the worrying/terrifying/crappy thing is that a TIA is often a warning sign for a future stroke. The doctors have absolutely no idea what caused this TIA. The doctors have absolutely no idea whether or not I am going to have another more dangerous stroke. The doctors have absolutely no idea if they can stop another stroke from happening. The doctors have absolutely no idea if the next one is going to kill me. The doctors don’t know anything! I mean I’m 22 years old and I’ve already had one major stroke and one mini-stroke, how much more of this can I take?!

Philomena
You are seriously one of the strongest people that I know. You are dealing with a hell of a lot right now Mugabi. How many people can say that their worst fears ever in life were realized more than once? How many can say that despite everything, they handled facing their worst fears multiple times with such grace? You are incredibly terrified right now, I get that. Never mistake fear for weakness. You are alone, without family or close friends in a place you have barely been in for a few months. You are encountering a terrifying medical emergency. You are in an incredibly stressful situation (having to deal with this on finals week of all times).

But, you are handling this with an incredible amount of fortitude. Heck there is no way in hell that I would be able to handle what you are dealing with right now. No way I could be as vulnerable and courageous as you are. You are in my prayers my friend!!

Ugh. I wish I could be more reassuring right now, but I have like zero neurological knowledge. Always know you can tell me anything. I’m so incredibly sorry that you’re dealing with this, but if there’s anything I can do for you, don’t hesitate to ask. I’m your sister from another African mister. You’re my brother from another African mother

13/12/2016:

At twenty two years old, I suffered from what was initially misdiagnosed as a TIA but was later diagnosed as a second stroke. My second stroke left me suffering from a deluge of newfound chronic illnesses, namely:

1) severe chronic widespread pain, which makes every single part of my body feel like it’s on fire and being crushed for every single second of the day
2) severe chronic fatigue and weakness to the extent that I could not get out of bed for the majority of last year because I did not have the energy to
3) chronic dizziness and lightheaded feelings
4) sensations of intense heat and motion throughout my body
5) violent, painful seizures lasting anywhere from 2 minutes to 2 hours
6) hot flashes and feverish feelings
7) insomnia, I am in too much pain to fall asleep without medication
8) migraines and a chronic headache 24/7
9) a deep depression

My second stroke came out of nowhere. I have known since my first stroke, that more strokes were likely in my future, but never expected to actually have another one. My second stroke was followed by a third stroke, which will likely be followed by a fourth stroke. My health will likely deteriorate after every stroke, as it has done thus far. I will likely die from a stroke. There is nothing any health professional or myself can do about this.

My second stroke was an incredibly hard lesson in acceptance. My second stroke was a hard lesson in the unfair nature of life. Sometimes it doesn’t get better. Sometimes you can’t win.

My name is Mugabi Byenkya.
I am a stroke survivor.
And I am damn proud of it.

 

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