The Now Button

ManWeek Post #2- Dealing with the Unexpected

I am writing the post for several reasons, not the least of which is to help with Man Week and to hopefully inspire others so think along the same lines.

After writing my first man week post about ‘Becoming a Dad and more of a Man’ I realised that I had not only shared a great part of my life with others, but I had missed a large stone in the path of my life and one that perhaps had the greatest impact on my life and the relationship I have with my lovely wife Simone. This story was party inspired by Scott Drummond’s beautiful post for Man Week about loosing his mother to Multiple Sclerosis.

My wife’s mother has suffered from MS since Simone was born over 32 years ago, and is now primarily wheelchair bound for mobility, but has not lost any of her fight or tenacity, an attribute I am glad her daughter has.

This story starts about 4 years ago when we had been married for about two and a half years, and were getting ready to sell our apartment and move into a house we had recently purchased. Like many families making such a move it was a little daunting, but being our third property purchase, we knew a little more of what to expect. We were putting the final touches to the apartment for the last week of inspections, doing everything possible to ensure a great sale price come auction night. Typically we had ’stretched’ our budget when buying our new house so anything and everything we could do would help.

It was at this time that Simone noticed a strange tingling in her left side, primarily in her hand and foot. She described it as basically pins and needles. I simply said that she probably slept on her side that night and that it would disappear reasonably quickly. A day went by and still the feeling was there, and in getting more painful by the day. We quizzed my father on the symptoms, being a pharmacist we thought he might have a logical answer for it, but there was nothing he could think of. We thought it best to see the local GP in the hope that again it would be something simple and a quick pill and some bed rest would get rid of it.

The GP wanted to run some blood tests to get a better idea of what was happening. The results showed particular elevated levels that often indicate the body is trying to fight off something, but didn’t pinpoint anything. As the pain seemed to be nerve based and with the history of MS in the family, we were referred to a neurologist for further testing.

Just the mention of MS and a neurologist scared the crap out of me. We were both stressed enough with the upcoming auction of the apartment and the hassles with the vendor of our new place that this made those problems seem like a walk in the park.

I can clearly remember walking into the neurologist office with Simone. It was a typical doctors waiting room- the old copies of Time Magazine and National Geographic together with the kids toys in the corner in a vain attempt to keep young ones occupied. The neurologist ran some standard motor neuron and pin prick tests and had a lengthy discussion with Simone about her family history and the recent symptoms. She concluded that the issue warranted further investigation and referred Simone to get an MRI (Magnetic Resonance Imaging) scan of her brain and spine.

All I remember is Simone telling my how scary the scan was as they make you lie totally still for about 20 mins and the scanner is painfully loud as it goes over the body. We waited about an hour for the scans to be developed and went home hoping all would be okay. Although told not to, we opened the scans to try and look to see if we could notice anything out of the ordinary. We had no idea what we were looking for, and simply had to wait until the next appointment.

I can still remember the exact route we took together walking from the car park, through the still open David Jones whilst the new Westfield was being constructed at Bondi Junction, and out the the lane to enter the doctors building. We we holding each others hands so tightly and I was clutching the large envelope with the scans hoping that the bad dream would be just that- a dream. The scans were popped up on the bright screen in the doctors office and she studied them intensely whilst we simply sat there powerless to change whatever the outcome was going to be.

She put her pen down and began to explain the the reasonably predominant while legion on the lower area of my wife’s brain was refereed to as demyelination. Put simply it is when the protective layer around nerves is lost. Multiple occurrences of this is very basically what Multiple Sclerosis is. Simone and I held it together just enough to leave the doctors office without bursting into tears. The following days included several more visits culminating in the neurologists recommendation that Simone be put on Cortisone injections in hospital to help with the pain.

This was were things really got tough for us. It was the day our apartment was going for auction and Simone was checking into hospital at Randwick. She had never been in hospital before and it was all rather scary. To totally make it even tougher, we had to keep the news from her mother as she was in the process of moving into a nursing home to get more dedicated help with her MS.

I am the type of person that absolutely hates surprises. I like to know what is happening and when, and if I even get a whiff of something, I will usually stop at nothing to get the full story. You can imagine how I was in this situation with Simone. Not knowing what was happening, what the next day would bring and how our lives might be turned upside down from this event. Trying my best to ‘act’ like a man I bottled all my feelings up and made sure that I didn’t let Simone know how shit scared I was. I remember holding her hand in the hospital is she lay on her side to get a lumber puncture. Having had one myself several years earlier I knew what she was going through as I still rate it the single most painful thing I have ever experienced.

The rest of that day was filled with so much stress that I can’t even remember how I got through it. A family friend acting as our solicitor had to draft up a power of attorney for me to sign on Simone’s behalf at the auction that night. He even drove to the hospital on his lunch break so Simone could sign the papers. I had to put on a brave face as no other family or friends knew what was happening. I simply said she wasn’t feeling very well and stayed at home for the auction. As soon as it was sold and the papers were signed, I jumped in the car and headed for the hospital. I remember sitting in one of those old plastic chairs in the share room the Simone had holding her hand whilst we watched of all things the premier episode of House on TV.

A few days later and Simone discharged herself from hospital knowing that it was simply bed rest that she needed. Her business was put on hold as she couldn’t do her shows as a children’s performer with her condition. Things did slowly improve, and the follow up scan basically showed no sign of the legion that was there earlier. We decided not to pursue harsher treatments as they are know to have effect for women hoping to have children. To this day Simone still has the tingling sensations in her had and foot, but to much lesser a degree. Four years later and we have two beautiful kids and couldn’t be happier.

Being a man is not about being macho or leading the charge through every problem that you encounter. It is simply about being human and in the case of relationships, being a friend just as much as being a man and a husband. An experience like these not only test us but they shape us. They shape who we are and influence why we make the decisions we do.