Looking for Hope at the UMDF Conference

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(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.

 

2016 – Where is the happiness?

It feels as if 2016 kicked everyone in the gut. Every person I know has faced hardship and strife. Too many people died, from the famous like David Bowie and Prince, to the not so famous but dearly loved, like my friend Randen. Tragedy hit hard and across the world war has escalated. I don’t know anyone who feels safe. And now with President Trump looming, most of my friends feel like they are one step away from disaster. I work in a town devastated by a wildfire. I see how many more homeless people there are crowding the park because there’s no where else to go. It’s so easy to get pulled in to the fear and darkness.

By focusing so much on the news and the dark stories I hear from others, I almost forgot there were many blessings for my family this year. I am teaching again. My husband’s cancer is gone. Our daughter is happy and has many friends. My new book is about half way written. Our garden is thriving. We are financially stable, at least in the short run. The roof doesn’t leak. Both cars run. We have enough to eat.

2011 through 2015 were filled with one health crisis after another. First my daughter almost died, then I was injured and lost my job, then my husband got cancer. We almost lost our home when his small-business ended. I have no idea how we got through those years.

But 2016 in contrast was a wonderful year for my hubby and kid. No one was sick. No one injured. The bills were paid. Seems sad to compare 2016 to those prior four years, as if I’m saying it was a good year because we didn’t die. But sometimes it feels that way…

The future scares the hell out of me. My daughter’s health is declining and I’m afraid of the budget cuts a Republican government will force. How will that affect her and the support she needs to survive?

We are all worn out, fearful and tired. 2016 kicked everyone in the gut. But what I learned from so much fear and loss is that the only way to get back up is to remember the small miracles hidden in the fear.

My daughter’s smile.

Those moments with my special needs students when they suddenly understand something we’ve been working on for weeks.

Every time my beat-up 2003 Honda Odyssey starts on a frozen morning.

The amazing Chinese food my husband cooks from scratch.

Paying all the bills and still having money in the bank.

The tiny plants in my green house waiting for Spring.

Singing with friends on a bright Christmas afternoon.

There is still good in the world. Some years you have to look a little harder to find it, but it’s never gone. It’s worth fighting for. I heard that in a movie somewhere…

Happy New Year. Don’t give up.

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