How Chronic Illness Gave Me the Dream Life I Never Expected

You know how you strive for the “dream” life? You look for that one person who is just right — someone you can spend your life with, buy a house with, have a family together. How you work so hard to build a career that utilizes the best of your talents? How you put in the extra hours because you know it will pay off in the long run? All to get to that point where everything starts coming together: wonderful husband, new home, great job, two beautiful children.  

I was making it in my little world. And then: that moment. My neurologist leaned forward in his chair and told us we should do the things we wanted to do with our little family. Before I wouldn’t be able to any more. I reeled. I felt like shaking my fist at fate itself. Screaming in its face. I had worked so hard to get my plans in order! So how was this possible? The neurologist had diagnosed me with a progressive neurological disorder. I inched my tired frame out of his consultation room, leaving my dreams on the floor where my feet had been. Ribboned shreds of how I thought my life would be.

And there was grief. Adjustment. Anger and denial and frustration and so many tears. There were struggles and hardships. Moving around in a body that seemed to crawl from one medical event to another. But slowly, as the years crept past, the sorrow settled deeper than tears. I noticed I could see out beyond my own situation. I had a new lens to look through. I was seeing the same world, but it looked completely different.

I realized how much I wanted to be here.

I understood the value of existence and drew deep on the drive to survive. I began to research. I battled my way through medical journals, one laborious sentence at a time. I made notes, I joined forums, I asked questions. I sought help. And when help didn’t come, I took a different avenue. I found different doctors. I searched and strived and struggled. Some days, all I could do was survive the symptoms. Other days, I could do more. Somehow, I kept pushing. And in a strange way, I kept planning. It’s just that my plans were different. My perspective was entirely new.

And then, one day this January, when my will was weakening and I felt like I would never feel well again, I finally embarked on a new treatment pathway. Others’ hopes were not high this would work, but mine were. And within days I was feeling light years away from how I felt pre-infusion. I began to believe that “progressive” might in fact become “chronic.” The shades of difference between those two descriptors have given me a new lease on life. I’ve been ill for six years. I’ve been struggling through every day for six years, gritting my teeth and willing myself forward. Fearing the future and fighting for an alternative prognosis. And now, seeing the contrast between myself pre- and post-treatment, reflecting on all I am learning about life, I can also see that this journey has had some surprising positives.

Someone asked me a question the other day that might seem preposterous to people living with serious illness:

“Can you think of any positives that have come out of having an invisible illness?”

My response came out fast: “Yes!” Yes I can! Here are some of the gifts my invisible illness has brought me:

I Found My Passion

I had to rethink my work to fit my condition, so I started writing again. I love writing! Since I started writing in May last year, I’ve blogged 178 posts. I’ve written 24 pieces for other publications. I’ve been so busy and it has been fulfilling. All that writing has me believing my lifelong dream of writing books is not ridiculous after all. I may never have discovered this if I was still focused on my previous career.

A Fast-Track to Personal Growth

My husband, myself and our children have faced big character-developing situations. For my kids, equal difficulties would have otherwise been encountered later in life. They actually have the advantage of dealing with big life stuff early — they have their parents alongside them to help them through it. They’ve learned a lot about compassion, independence, flexibility and courage. They have all of these qualities in spades. Would they have been able to develop these if life hadn’t given our family this challenge?

The Time Is Now

We have been forced into acting on our “bucket list” and as a result, we’ve made memories we treasure. We’re naturally conservative, risk-averse people. I know we would have been putting any extra money straight into the mortgage if I hadn’t gotten sick. Because of that neurologist’s advice, we’ve been busy seizing the day. Whenever we can travel, we do. If there is an opportunity for us to do something special as a family, no matter how I am feeling, we try to do it. And I am glad. Our photo albums are bulging with images that will remind our children, always, how much fun we’ve had together. It’s worth far more than all the money it ever cost.

Knowing What Really Matters

We don’t hold back from telling each other how much we love each other. And we don’t let arguments simmer. It’s not worth the drama, the trauma or the angst. Our hearts are less scarred. We nurture each other and listen to feelings. Solving problems between each other has become a feature of our family culture. That is a huge positive for all of us, and a really special gift we can all give each other. Open communication and an eye on the bigger picture. What really matters, after all?

Finding New Possibilities

Life is not what I planned for it to be, but I find it is better than I ever expected. It’s surprising what turns up. I am about to embark on a leadership program sponsored by the Be. Organization. Through my writing, I was identified as a voice for social change. My passion for writing about the issues that affect people with invisible illness has been recognized, and I am so excited about the year ahead. When I was first diagnosed, I never could have comprehended all the opportunities that would still exist for me. It feels like I never would have traveled this path without that diagnosis. And this path seems to be exactly what I am supposed to be doing. I plan to be a powerful voice for social change. I want to increase compassion in our world so people who are struggling can be understood, valued and find a way to contribute to the future.