Many of us have heard this cliche before: being diagnosed or having a loved one diagnosed with a life-threatening illness changes your life. There are movies made about it. There are books written about it and blog posts about the little acts of kindness, the exciting steps toward progress and the new perspective you have.
This story — my story — is exactly like some others: optimistic, cliche, entirely true and entirely unique. It’s a story you might read by fluttering over the words, maybe shed a tear or two and then go back to living your life the way you did before. Because however touching, however moving you may find this story to be, it’s always going to be just that: a story.
Prior to March 20, 2009, they were “just stories” to me, too.
When my now-6-year-old brother, Timmy, was born, I was happy. When he was diagnosed a few months later (he has three diagnoses: agenesis of the corpus callosum, optic nerve hypoplasia and mitochondrial myopathy), I was confused but still happy. There was no epiphany where I gained my new insights on life and death. There was no movie moment where I suddenly saw the world in a new light. My life changed gradually. I was 10 years old when Timmy was born; I am now 17. These are four of the many ways in which Timmy has changed my life.
1. Having normal conversations in funny voices, enunciating words like “Oh yeah” and making sound effects for everything are part of my daily routine.
These things just became normal for us. Things we used to never think about and now do every day. Things that may seem strange to other people but to us are just routine. A routine to keep Timmy happy.
2. It is easier to deal with everything else.
When each and every day I have to watch my brother work hard to do things that come naturally to me. When deep down I know his condition is degenerative and no matter how much progress he makes, there is no cure. When, in other words, it’s a real possibility I will have to watch my brother die, and I can’t help him, and the only way to cope is by willful ignorance — everything else in life feels so much smaller. I used to want to live in a bigger house and for my family to have more money. But no amount of money can buy a cure, so what’s the point?
3. I became used to just “smiling and nodding” whenever people try to pretend they understand. But when I say, “Thank you,” I mean it.
Any kind words are appreciated. Any acknowledgment of what my family goes through each day is appreciated. But sometimes people express themselves in ways they think are profound and insightful, when really they’re just insensitive. It’s not worth it to fight or argue, so as I learned from my mother, just smile and nod and say thank you. Because at least they tried, and I can appreciate that.
4. I’m isolated from everyone else, but I’m OK with that.
It’s hard because no one really “gets” how it is. My family had to adapt in many ways in order to accommodate for Timmy’s needs. I love Timmy, and every sacrifice I’ve had to make is totally, 100 percent worth it. For a little while I did try: I told people how hard it was, how much my life changed when Timmy came, but when it’s not your life, it’s easy to say it’ll be OK. My family became closer as a result because we are the only people who know what it’s like.
I’ve learned to deal with the pain. I know that, for the sake of the present, it’s to best focus on Timmy, on keeping him happy, on loving him and not on the fact that he’s sick.
The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.