When you’re teaching at a medical conference, listen to your audience!

After the UMDF conference last year, I thought about all the people I saw with a vision impairment. How could I help? I submitted a proposal for a workshop addressing the needs of people coping with vision loss and their loved ones. UMDF liked the idea and put me in touch with the head of the L.H.O.N. group.

L.H.O.N, which stands for Leibers Hereditary Optic Neuropathy, is a vision impairment caused by mitochondrial disease. Even though I’m an Orientation and Mobility Specialist with a Master’s Degree in Vision Impairments, I had never heard of this disorder (more about L.H.O.N. in a later post). Maria (Girl Gone Blind) and I talked on the phone and she helped me develop my presentation. I would give the talk twice, once for those affected by L.H.O.N, and again in the general assembly for anyone dealing with other forms of vision loss. I put together a Power Point presentation, wrote my bio, packed my suitcase, and flew to Washington DC (Alexandria, VA to be exact. Just across the Potomac river).

People asked me if I was nervous. Funny thing, I wasn’t. The idea of talking to a room full of interested strangers didn’t worry me at all. I have information, I love to teach, they want to learn… perfect. However, as I stepped in front of a crowd of people with a vision impairment and their loved ones, I suddenly felt afraid. What did I have to offer these experts? They were living with vision loss while I’m just a teacher who can show them how to travel with a white cane.

That’s how I began. I focused my talk on communication between the person with vision loss and their family and friends. The only way to be an effective partner is through respect and communication. I did an abbreviated demonstration of Human Guide technique and moved on to how to support a person with vision loss in crowded and unfamiliar areas. Basically, “don’t ditch your loved one at a party.” After my talk I heard mixed reviews. Some people gave me a big thumbs up and said it was “great.” Others felt I didn’t present anything new and was “preaching to the choir.” I realized that mostly the people who thought it was great were people without vision loss. The people with vision loss were mostly bored. Oh well… like I said, they’re the expert.

The next day I gave my talk to the general assembly. However, as I began talking about supporting your loved one with vision loss, a woman raised her hand and asked, “Is this just about blind people?” I was afraid that would happen. The conference program left out vision loss in the description. Standing in a room filled with people looking for information about wheelchairs, walkers, and coping with changing mobility, I realized I had no idea what to say. So I took a deep breath, threw my notes aside, and started talking about my own experience working with my daughter and her changing needs. I also talked about working with older adults and how they struggled as their needs increased. Thankfully my audience started talking and sharing stories. I stepped back and facilitated the conversation. Dropping my teacher role, I became the advocate, a role I’ve played for 20 years. Once again, I was not the expert in the room; the people sharing their stories about declining mobility and strength were the experts. My talk went in a completely unexpected and unplanned direction and I loved it!

It’s funny that I was more nervous with my planned talk in front of an audience of mostly visually impaired people than I was winging it without notes. All those years I spent doing improv paid off. I used my theater background, advocacy and mediation training, and what I’ve learned being the parent of a child with a disability, and just followed my gut. But if the people in the room hadn’t starting talking, I would have been screwed. Once again, thank you experts!

I hope to give more talks in the future. I love teaching and interacting with people. My next topic will be on advocacy and independence. Need a speaker?

My next blog post will be about the day I spent lobbying for health care on Capitol Hill. This just happened to be the week the vote on repealing The Affordable Care Act was being debated by the GOP.  Interesting adventure.


Looking for Hope at the UMDF Conference


(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.


Not the only Mito Kid in the world


My daughter Rhia and I spent the last four days in Seattle at the Mitochondrial Disease Medical Conference. Hundreds of people with mitochondrial disease, their family, parents, doctors and researchers gathered at the SeaTac Hilton Double Tree Hotel to discuss potential treatments, research breakthrough’s and symptom management. The conference travels from the East to the West coast. This year it was only a two hour flight from our home, so my daughter and I decided to go.

The main goal for us was to meet other young people and kids with the disease. Rhia was convinced she was the only person in the world with Mitochondrial disease. There is no one else like her who uses a wheelchair because her legs are “too lazy” to walk (her words). No one else is deaf-blind and no one else has hands that shake.

Rhia quickly learned she isn’t the only girl on the planet. At the conference, she met a girl who uses a wheelchair because she too gets too tired to walk far and tends to shake when fatigued. We met a young man who has the same doctor as Rhia and has dealt with all the same tests and procedures. We met a young woman with thick glasses who struggles with seizures while trying to go to college. A young man who used to play sports but now spends more time in bed than on the field. We met teenagers and young adults from all over the US who battle mitochondrial disease every day just to have some kind of self-actualized life.

No one else is deaf-blind, though. I spent most of my time interpreting sign language so Rhia could understand what people were saying. It was a challenge to help Rhia become included in the group. They could all talk about their frustrations and joys, and they shared their experiences freely, supporting each other as best they could. As a deaf-bind person, Rhia is a rarity within a rare group. But everyone worked hard to include Rhia in the group. Whether she could understand their spoken words or not, she was still one of them. In time, Rhia warmed up and made two connections which could develop into friendships. Unfortunately they  live in different states, but if they can figure out how to stay in touch, the three could really help each other not feel so isolated.

Unfortunately I wasn’t able to attend many of the workshops on mitochondrial disease treatment and management, so I missed a lot of the information. But Rhia and I achieved our goal: connecting to other people with “mito” and understanding Rhia is not all alone. At times it was hard for me to step back from being mom and just facilitate communication. The stories people shared about their anger and grief coping with mitochondrial disease were heart wrenching. These kids should be enjoying high school and planning for college, not managing symptoms of a degenerative disease. Rhia said she hated her “lazy legs” and wished she could walk. She was tired of hurting herself all the time. The others nodded, understanding her anger. Reminding myself that I was here to support Rhia’s communication needs, I kept my tears in check.

At the end of the conference we were both exhausted and ready to be home. Two days later I’m still trying to regain my energy. The trip was challenging physically and emotionally, but worth it. We’ll definitely go again.

Thank you UMDF for providing this community and helping us cope with Mito. It’s not easy, but together, we can do it.