Stories & Achievements: Mark L’s Story

Mark L’s story: a wife’s perspective

Written by Mark’s wife, Tracey.

After Mark had his first stroke, a word that I learned early was hope. It’s something I think for us has been very important. To always have hope that we not only have each other, but that improvements could happen, and did happen.

Mark’s stroke is a result of radiation treatment he had for brain tumours that he had as teen. Back in 1979, radiation treatment was given in a general area. There was no helmets to protect any other areas so damage has been done. But that did give Mark lots of years of quality life. And you’d do it all again. It’s just the way technology was then compared to nowadays.

So we went from two people that were both working and having time apart, and then back together and when something like this happens you are thrown in 24/7 with each other all the time. That can be difficult because you both go through a huge change in life. And I think that without having the right supports we wouldn’t have functioned as well as we do.  

When Mark had his stroke our daughter was 10. So my role needed to be mum as well… mum and dad in a lot of ways. So it was important that I could fill that role as well, which I’d never have been to do without Headstart’s support, so we were quite lucky there.

Back in 2011 when the hospital Social Worker gave me the Headstart application, it was something I didn’t think that I’d need. I remember when Mark first came home and Kesley and Sue came for a visit to chat and see what supports could be offered. I was just lucky that I had someone tell me about this organisation that has been just invaluable in our lives. I know myself, I wouldn’t have been able to return to work without Headstart support, which you know I have been fortunate to be able to do. I wouldn’t do as well as what I do as a carer without the supports I received.  I think for Mark too, it’s good for him to get away from his wife at times.

We’ve probably been through one of the toughest times just recently when stroke came back for the fourth time in March this year. I know for me emotionally it was my roughest time. I think Mark’s left eye now has been closed. It may open… it may not. And that was his good eye. It was his good side, his seeing eye. And to me that was such a cruel, cruel thing and to get back up after that has been a lot harder with some medical decisions that were made during that time. I see a psychologist so that I keep my own mental health in check because if I’m not good for me, I’m good for nobody. This guy keeps smiling and he just keeps going. 

But it’s tough, it’s definitely tough. Fatigue has been one of the real struggles for Mark. He has been able to do some trials at the HMRI (Hunter Medical Research Institute), who do some absolutely amazing studies. One of the medications in particular has made a big difference with his fatigue. Otherwise we deal with fatigue with plenty of rest and sleep to recharge.

Stroke is one of those things where you become a member of a club that you didn’t know existed. You become a life member instantly, a club that you can’t leave. But there are silver linings for these things. 

I have a group of ladies and we call each other our “stroke wives”.  We have come into each other’s lives through adversity after our husband’s had strokes or acquired brain injuries. We are still great supports for each other and we really ‘get’ what the other one’s going through. Even though our journeys are all a little different we can still really relate to bits and pieces. I think it is really important not to feel like you’re a Robinson Crusoe. It can be a lonely journey without others who can relate to what you’re going through. 

After a few years being with Headstart I became a member of the Board and I’ve been doing that ever since. I felt there was such a great organisation I wanted to be involved in that side of things, and do what I could. It was good for me, both mentally as well, because I could start to use some of my training that I had. They reeled me in to become Treasurer, so I think that was good for me, and obviously, I believed Headstart were a great organisation and I’m proud to be part of the Board and helping to make the decisions and guide it through this ever changing word of disability.