Grieving for the life you had planned.

This week’s MS and Me blog from Grace Kavanagh
“... I have suffered a very real loss.”

Things rarely, if ever, go according to plan. It’s a natural part of life. We have all had to make adjustments and rethink possibly unrealistic life goals. Maybe you wanted to be a Power Ranger when you were a child or a superhero or king of the world! Some ideas we just naturally grow out of or organically accept as unrealistic.

But what if your big plan is to go for a walk and the version you end up with is sitting in the garden two feet from your front door? Those compromises can be a bit harder to take.

The only plan I recall having when I was a child was to make salad sandwiches and for my dad to deliver them to offices and businesses. We were so ahead of our time - if only we’d done it, we’d be millionaires by now!

Thinking about it, I don’t think I had any major “life plans” - just to work hard and enjoy life. I chose to embark on a career in software development and worked incredibly hard to make it happen. I studied for years, got my degrees, and undertook various roles to start my career.

And then MS entered my life.

No-one’s plan includes coping with MS. Over my 14+ years with the disease everything has changed and become more difficult. It didn’t happen immediately or even over-night but gradually little things became harder until it started to have more noticeable effects on my life. My plans were derailed. Knowing how MS was affecting me at the time, I had to make the decision to leave my software development role. I needed to cut out the long commute and working hours and focus more on taking care of my mental health. I retrained as an adult learning tutor and worked in schools and offices closer to home. This worked for a while but gradually, lugging my laptop around various sites and being on my feet in a classroom, became problematic. And so the pattern continued.

As jobs and hobbies became difficult for various, mostly MS-related, reasons I tried to look ahead to try to mitigate these issues and find new options. When finding work seemed impossible, I took on various voluntary roles to get fulfillment and to feel useful.

This constant changing and restructuring is where the grieving comes in. I am tired of compromising, resetting my focus and lowering my expectations to fit with restrictions and barriers I never asked for or caused through my own actions or choices. I often feel like the rug has been pulled out from underneath me, that I have to scramble to readjust and find new meaning.

Similar to the traditional sense of grief when a loved one dies, everything seems unknown. The future you were expecting is no longer possible, there’s an end to the plans you had and you don’t know what’s next. The person I lost is the young ambitious me that worked so hard for a career that never was. That version of me, eager to give things a go, I feel sad for. All the effort and energy she put in for a future that didn’t materialise. I’m so sad that I won’t get to see what crazy thing she’d do next.

I think it is important to recognise that I have suffered a very real loss. Not to dwell on it or let it take over the rest of my life but to acknowledge it. So, like laying flowers on a grave, I think of her on occasion and try to keep aspects of her alive in how I live my life today. I think today I’ll go get myself some flowers!