Counting The Wrinkles And Picking Up The Pieces 5 Years Later

June 24th, 2011 by Jules Leave a reply »

Five years ago today, the unthinkable happened. I had a full-blown left-sided stroke.

It was a rather bizarre event. When the symptoms began, I was talking on the phone with a friend. My left foot had suddenly gone numb and heavy. My first thought was that I was sitting funny and it was just asleep. So in an attempt to wake it up, I changed position and tried to wriggle my toes, only to discover that I could not. Rapidly, the numbness started to spread. That is when I told my friend, “I have to go. I think I’m having a stroke.”

I can only imagine the look on the person’s face when they heard those words coming through the phone. They sputtered. The only response I can clearly remember was something about me being okay and the word stroke being echoed back. Not thinking, I repeated, “Gotta go. Having a stoke” and I hung up the phone and went to the emergency room.

What happened within the next hour was a rush of events as they tried to get a medical history from someone who could now no longer move any part of the left side of their body and had no feeling in it. I was half confused and half coherent. Time was ticking as they only had one hour to decide if it was a stroke or neuro issues as a result of my lupus. You have one hour to administer TPA if you have any hope of reversing the effects.

It felt as if days had passed but it was less than an hour before I was giving consent to one of the most dangerous procedures I had even underwent—having a hysterectomy the year before with only a sedative because of how many times I’ve been under a general anesthetic and subsequent allergy was nothing compared to the risks of TPA.

Consent was given. Loved ones were called. The TPA was administered. Then we waited to see if it would eventually do its job or would I bleed out.

The next week I spent in ICU, in isolation, undergoing more tests and the beginning of rehab. I was to stay in the hospital for months as I had to relearn how to hold objects, talk, walk, dress and bathe myself, wipe my own arse and the list goes on.

A couple days after my stroke, my body played a cruel joke on me. The physiotherapist asked me to move my toes. My brain told me that I did and I cheered, “Yes, I did it!” Grimly, the therapist looked at me and said, “No. Sorry. You didn’t.” I felt defeated.

I was 30-years-old. I had to be fed. I couldn’t pee without a tube. I couldn’t take a shit without someone putting me on a toilet and wiping my ass. I couldn’t walk, never mind crawl. It was bad enough that lupus took my uterus the year before. But I was 30 and needed to be cared for like I was an infant.

I was dehumanised.

It shouldn’t have been surprising that I had a stroke at 30. I had my first TIA (a mini-stroke) when I was 19. Up until that day, I had at least 10 TIA—could’ve been more but I stopped counting. Regardless of the history, who has a fucking stroke when they are 30?! Apparently, I do. But that is something that is difficult to accept.

I forced them to release me from the hospital 6 days after the stroke. I no longer needed to be in ICU. They didn’t have a medical bed available for me. I was only there to rehabilitate and I felt it was a waste of money as I could get the same care at home. Plus, I had promised to take my boys to see Superman that night—it was the opening night—and I’d never broken a promise to them. A pesky stroke wasn’t going to be the cause. They were already terrified that their mum was not going to leave the hospital alive. So, after much convincing and many meetings between the different doctors, they released me.

I fought with all I could to be well again. I also raged A LOT and many times, I just wanted to give up and stay in a wheelchair. It was just so bloody difficult. By September, I was mostly walking on my own. But that took me doing 4 hours of physio at home, every day, and 2 hours, twice a week, at the hospital.

Some are surprised that I’ve had a stroke. If I’m not tired or if one is only exposed to me in small bursts, they don’t see the longterm effects. My brain has problems with communication, especially type communication. I will think one thing but, many times, what greets the person reading my words is complete gibberish. Well, not gibberish per se. They are proper words. Sometimes, they are even proper sentences. But it isn’t even any where near close to what I was actually thinking.

At times, people ignorantly—not willfully ignorant, mind you—will comment on this. My first reaction is to want to yell, “I had a fucking stroke, okay?! Please forgive me if I’m not bright enough for you!” Instead, I just give myself the mental tongue-lashing, call myself a stupid twit and cry on the inside, plus mourn for the brilliant brain I once had. It isn’t until later that I remind myself what exactly it is that I have overcome and continually overcome just to be able to communicate. Considering that a lot of what I do involved typed communication, I overcome obstacles every moment of the day. But because these obstacles are invisible and I make it appear that I do things so effortless, most people don’t see the struggles and just think I’m stupid or incompetent or can’t string together a grammatically correct sentence; leaving me once again to want to scream, “I HAD A FUCKING STROKE!” But that seems a bit like victimisation to me and I’m a survivor, damn it!

It is also because of the above that when I am really exhausted and ill, I don’t do type communication, or at least, I scale it back to essentials only and don’t chat with friends. You may as well be asking me to sprint to the Sun and back. It require so much effort on my part to do so.

The only noticeable longterm effect is that when I am tired, the left side of my face will droop and my left side becomes a little bit weaker.

There are times, especially when I am ill, that I think, “Why do I bother even fighting?”

There is the obvious answer that I do it for my two sons. They are my reasons. They are why I get up in the morning and am thankful for taking a breath of air, even if those breaths feel as if my lungs are being ripped to shreds… such as days like today.

Despite the fact I have moments of rage and frustration, moments where I feel life is passing me by, there are some effects that I am thankful for. These effects of signs of aging.

People are constantly telling me that I look much younger than I am. They tell me that they can’t believe that I have a 12-year-old and a near 16-year-old. I find this frustrating. Yes, I know they mean it as a compliment. But you see, I am a fighter. And, I’M ALIVE!

Each line and wrinkle, each white hair that is FINALLY beginning to crop-up, each section of skin that is becoming discoloured with age has a story. They were earned. As ridiculous as this sounds, I feel cheated that I do not have more. Because, boy, do I have stories to tell. These stories deserve to have a voice. Every fine line around my eyes is there because someone made me smile. Every deep line in my forehead is there because someone or something made me think or feel something. The fine lines around my mouth are there because I can continue to speak, laugh and smile.

I’m getting older. Lupus has not prevented this yet. My lines and wrinkles deserve a chance to share all of the stories of who I am. They too deserve a life. Hopefully, they will get their chance to really shine and be celebrated for the triumphs they are.

If you were to really look at my face, you’ll notice that I barely have any lines on the right side. However, if you look at the left side, there are now, even if really small, permanent lines around my eyes and on my cheeks. The left side of my face tells the story of how I managed to survive a stroke and 5 years later, jump over the obstacles it continues to throw at me, whilst still attempting to pick up the pieces.

There are many days where I do not feel brilliant. If I didn’t have any recollection of how truly fabulous I once was, surviving this may be easier. But I do remember and I know that it didn’t always feel like I was attempting to run with mud up to my neck when thinking. It is hard not to feel dim.

But then I look at my lines and wrinkles, they tell me the stories of my struggles and survival and I celebrate.

Five years ago I had to start over. It has been far from easy. Every day is a battle. But anything worth anything is a lot of hard work. Isn’t being alive worth the effort?

Despite having days where I feel life is passing me by, deep down I know I am living it to the fullest. I am living a fuller life than a lot of people who don’t have such struggles. Yes, I’d like just one day were I didn’t have to fight and could just enjoy it.

But holy shit, I’m alive.

Happy anniversary.

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10 comments

  1. Judy Berna says:

    Happy Anniversary! And I mean that in the most positive way you can take it. I celebrate the anniversary of my amputation surgery every year, but I got to pick that. I can’t imagine being forced into disability.
    Hooray to you, for plugging away, day after day. You made it five years. Who knows what wonderful things might come along in the next five years.
    I’m having a slice of cake, in your honor, today. I hope you are surrounded by people you love.
    judy

  2. Laura says:

    Holy shit indeed. If that term could be parsed for meaning, it might imply that the stinkiest and most foul happenings have about them something quite profoundly meaningful, and well, holy. Somewhere between the mundane and insane, the holiest of shit happens. Not fair, but dammit, you’re here and living every minute. I hold up my candle to you.

  3. Andrea says:

    Happy anniversary, Jules. And many line-ridden, white-haired returns of the day.

  4. Xanthe Wyse says:

    I don’t know a lot about lupus, apart from that it’s an autoimmune disease (that affects DNA?).

    Just a long-shot – have you tried a gluten-free diet? I saw some articles about links with gluten & autoimmune diseases including lupus.

    I had severe health issues for many years and my thyroid was packing up on me with from autoimmune disease. Turns out I was undiagnosed celiac. When I went gluten-free, the thyroid condition went into remission.

    • Jules says:

      Yes, I have tried a gluten-free diet. Gluten isn’t an issue.

      As for lupus, yes it is an auto-immune disorder. Easiest way I have found to explain lupus, in a very minimalist way cos explaining it fully takes hours and hours, you know how rheumatoid arthritis attacks the joints and soft tissue around the joints causing inflammation? (RA is also autoimmune) Well think of lupus like that, but instead of stopping at the joints, lupus will decide that any organ is an enemy and attack it causing inflammation and organ failure. Skin being the number 1 organ it attacks because it is the biggest.

      Lupus = overactive immune system. It cannot decide which are the good guys an which are the bad guys and so randomly decides to attack anything and every thing.

      • Xanthe Wyse says:

        that’s a bugger a gluten-free diet help any. I can appreciate some of your suffering, as I was ill with severe depression, chronic fatigue & pain disorder (bone, joint, muscle pain), skin rashes etc for years. Got to the point where I would be at near collapse walking up a few steps & I’m in my 30s.
        Chronic inflammation from overactive immune system.
        I’m actually sensitive to many foods – gluten is by far the worst for me. Apparently the over-reacting to foods with me is part of having a hyperactive immune system (and years of undiagnosed celiac). My body was trying to destroy my thyroid.
        I have to watch what I eat & not overdo things, but I’m doing a lot better these days. All the best.

  5. Xanthe Wyse says:

    forgot to add that I’ve heard of people having seizures from gluten. With your stroke – just wondering if some kind of connection there

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