Chapter 1
Have you ever had one of those moments when something you have done a million times before suddenly just does not happen the way it should? Almost like reaching in to put the milk carton back into the same place in the fridge, but suddenly that space is taken by something random? Or when you are putting on your favourite jacket but just cannot seem to find that freaking arm hole, because it is turned inside out?
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I am Louis, and my moment started with your standard morning shower, except when reaching to open the shower door, I suddenly missed. I have done it a million times. I actually tend to open doors quite regularly; it is something I consider myself pretty excellent at… until suddenly I wasnโt. Convinced that I am indeed still brilliant at opening doors, I ignored the incident and carried on with confidence, as one does. But then, when facing that same shower door the next morning, the same thing happened.
I reach, I miss, my balance is thrown, my confidence falters.
But that one moment of a slight wrinkle in the norm turned into a whole list of stranger-than-fiction events and feelings that left us concerned. The double vision, the off-balance, the struggle with depth perception, compiled themselves into a neat little list for Doctor Google to help us diagnose. After a quick search and some light reading, we had reached a consensus โ it must be vertigo.
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Two weeks to resolve. Ride it out. Normal is around the corner.
But then it doesnโt. It doesnโt resolve. Normal moves further and further out of my reach. In fact, things intensify. The double vision is so bad that I lie on my side with my hand over one eye watching TV like a tired pirate, just so I can keep the image single and still.
But I cannot seem to come to terms with the fact that my body is not functioning like it should. I mean, I am a healthy 29-year-old, hardly ever use my medical aid, donโt even know the doctorโs number! What am I supposed to do with these weird mishaps? These moments of dysfunction?
Turns out that there is nothing like a little temporary blindness to make you stop in your tracks. I started losing complete vision when I turned my head to check out the back window when reversing, and as most of you know, vision is rather important when driving. It was time to face the music โ also known as the brain-tumor diagnosis that I was convinced I would be receiving.
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First stop: optometrist. It felt like a pretty logical place to start. But the 20/20 score on the eyesight test did not match my reality.
Stumped at first, the optometrist walked us out of her office, but then hesitated and asked to run one more test. We obliged, because it is not like we had any new ideas.
The outcome of said test? An immediate referral to a neurologist. Neurologist. A weighted word.
And as it turns out, a pretty hard person to get an appointment with. The earliest they could see me was in three months. But three months of uncertainty and random incidents that prevented me from functioning was just too much. So we called. Every day. Every. Damn. Day. Ever hopeful. Ever persistent.
Finally โ an appointment, only two months away. We won a whole month, and at that point we took the victory. Two monthsโ wait for two days of testing. Testing of the body. Testing of the mind. Testing of the heart.
And then the biggest test of all. The diagnosis. Multiple Sclerosis. MS.
I fell silent. Knowing. My wife fell silent. Not knowing. Questions in her eyes.
We stood in the parking lot, a cigarette in my hand as I tried to explain, shattering our world with each word.
Back we head inside, more tests, the start of a treatment plan, decisions to be made, new realities to embrace. Brave faces, suppressed tears, quick Google searches, hearts aching in our chests. Keep it together, at least while we are in the consultation room, keep it together, at least for a little while.
And then we walked straight into the giant wall of red tape that comes with having a chronic illness.
Medical aid. Simply having it was not enough. You still had to do the whole song and dance to make it work for you.
Turns out, to be covered by my medical aid, I had to have two noteworthy MS โattacksโ. With one already under the belt, I had to navigate how to try to live a better, more functional life while essentially waiting for the next โattackโ to happen in order to have access to the actual medication I needed.
So we did cortisone drips, massive amounts to boost my body to return some semblance of normal and fortify my body for the next few months.
Roughly six months passed before I found myself face-to-face with my new companion again. But this second attack gave us the proof we needed to write the medical aidโs motivation letter and start my treatment plan. It is all about finding the victories in the little things.
Another little victory? A new experimental drug for treating MS has just been released in South Africa. And I had access to it. Luckily I had medical aid because the meds came at a hefty price. And so we worked the red tape and jumped through the hoops and began my treatment.
Want to know about a big victory now? One of the rules about this medication is that you may not conceive a child while actively taking it, regardless of whether it is the man or woman taking the medication. But it is funny how timing works, because at the time, unbeknownst to us, our son was already busy growing, tucked safely in my wife, reminding us of all the life and love we still have despite this grueling journey.
A surprise. The good kind for a change.
- Visit Louis Leonard’s business, Buckets of Blessings, contact him on 072 601 8471 or send an email to louis@bucketsofblessings.com. You can also visit his wife Lize’s photographic studio Little Miracles Photography here.
Chapter 2 will be published on Thursday, 11 September.
