What do you do when your husband is diagnosed with a rare, degenerative, incurable disease? You yell ‘Plot twist!’ to those wedding vows, buy him a shower chair, and let love take care of the rest

You know the part of your wedding day where you’re a few glasses of bubbly strong and floating down the aisle to swear eternal love to your spouse? And your wedding vows come tumbling out like it’s no big deal?

Does anyone ever think of the actual words in those vows? I didn’t, until “in sickness and in health” came for me. After seven years of marriage, my 37-year-old husband started having regular blackouts and severe shortness of breath. After various tests and hospital stays, pulmonary arterial hypertension (PAH) was diagnosed.

In short, it’s when your lungs no longer want to be in the same chat group as the rest of your body. The arterial walls in the lungs decide to just keep growing thicker and become way too narrow for the blood from your heart to pass through. Your lungs read the message that says ‘Open up for the blood coming through’, but the arteries in your lungs are saying ‘We’re not entirely convinced we want to do that’. If you remember anything about basic biology, you’ll know this is hardly ideal.

When Elton explained this to our son who was four at the time, he listened and summarised it as “So Daddy, your lungs don’t feel like being lungs anymore?” It was so on point, my husband uses it as his standard intro when people ask him about his condition.

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Instead of the lovely holidays abroad, wine-soaked weekends in the winelands and long walks on the beach, we had to quickly cut, as nightmares so graphically do, to our new normal.

Our new normal

My husband became too weak to put in a full week of work initially and that quickly deteriorated to not even being able to do a full day of work. His sick leave was depleted, and he was under severe pressure to actually stay at work long enough for it to count as a day.

Even though we’re pavement specials, Elton’s family tree has a touch of German and I always tease him about his supposed German work ethic. He’s the sort of employee companies dream about. Loved his job, people adored him and he was shooting the lights out. He would rather die than not be at work.

Getting him to admit that he was no longer able to put in a full day’s work was tough. Doors were slammed, voices were raised and cars revved out the driveway (all by me), all while Elton nearly killed himself to get to work and to stay there long enough for it to count.

Instead of the lovely holidays abroad, wine-soaked weekends in the winelands and long walks on the beach, we had to quickly cut, as nightmares so graphically do, to our new normal

Elton says thanearly blacking out in the loo at work, made him realise he needed to rethink his situation. Eventually the stress of having to go to our GP to be booked off and getting sick note upon sick note was just too much for him and he asked me to help him draft an e-mail to his manager… one of the hardest things we’ve had to do as a couple.

Elton likes to say he comes from a long line of emotionally stunted people, and he rarely shows emotion. He cried like a baby when he saw our son for the first time, and the next time I saw him cry was while drafting that e-mail.

At the risk of sounding like an insurance broker, life can change in a heartbeat

You know those additional premiums you have to pay for dread disease/disability cover? The extra money you shell out rather begrudgingly and wonder if your broker was just trying to up his commission? The extra money you wish you could use and think of removing that clause from your policy? That precaution was a lifesaver for us.

We’d be in a rather interesting situation had we not continued paying those bothersome extra premiums for the first seven years of our marriage. If I could go back in time, I would put all my extra cash in life policies and retirement annuities. At the risk of sounding like an insurance broker, life can change in a heartbeat.

One minute you’re looking at kitchen and bathroom updates on Pinterest and planning to buy a bigger car so you can have more babies and just like that, you’re having to discuss your husband’s inability to hold down a full-time job and navigate the delicate process of medical retirement and all the hoops one has to jump through to make this happen to ensure we have enough income to cover our expenses.

As a couple we’ve had to make many not-so-fun changes

I’ve had to leave the ridiculously indulged wife behind and become the caregiver-with-benefits. He had to cash in his manly husband-who-does-manly-things chips and rely on his wife to do things for him and call the local DIY man to do manly man things like home maintenance.

Okay, he’d be the first to admit that PAH didn’t take that much of his DIY skills away from him as he didn’t have that much to begin with! He’s an IT guy by trade, so desk jockey, as opposed to lumberjack, but he always tried until an expert had to be called in (just before I threatened to call a divorce attorney).

We’re five years post diagnosis, on year two-and-a-half of medical retirement and the only bathroom update we can afford is the shower chair needed for him to take a shower without passing out from exertion. Instead of the fancy mom’s taxi I was coveting, we sold one car to buy a mobility scooter for Elton, as walking for longer than three minutes is difficult.

He’s a Lord of the Rings fan and there was only ever going to be one name for the scooter, ‘Shadowfax’, and my ‘Gandalf’ has had many adventures with his trusty steed. He’s entertaining the idea of an off-road upgrade but the letter of motivation to our medical aid would have to be more convincing than “I’d like to hit the dunes at Noordhoek beach, so please pay for my mobility scooter upgrade”.

Until then, it’s strictly malls, pavements, tar and hard gravel for ‘Shadowfax’ and his master.

Article by: Rochelle Barrish