Month: July 2017

Posted on in activism, disabilities, mitochondrial disease, opinion, politics

Lobbying for Healthcare in a bizarre world called Congress.

My plane landed in Washington DC at 5:30 AM. I’d never taken a “red eye” before and I was surprised I’d managed to get a little sleep on the flight from San Francisco. Grabbing my suitcase I found my shuttle and rode the 20 minutes to my hotel. In the lobby, the clerk said cheerfully, “Good morning. Checking in?”

I held up a finger. “Just a minute. Where’s the bathroom?” She pointed down the hall to my left.

Quickly I changed out of my yoga pants and tshirt and put on my professional looking dress, one I had chosen because it didn’t wrinkle. I brushed my teeth, put on earrings, slippped into heels, and added lipstick. After leaving my overstuffed suitcase with the front desk I joined the group of people heading to Congress to fight for health care for people with Mitochondrial Disease. It was 7 AM and I needed coffee bad. But I was ready.

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This was day one of the UMDF conference. I joined my assigned group, a doctor and a mom from California and a man who had LHON. We were to meet with 5 of our political representatives or their staff,  in the Senate and the House. At first we weren’t sure what to do, but once we got to Senator Feinstein’s office our group found its voice. The doctor in our group explained about Mitochondrial disease and the research efforts of the National Institute of Health. The mom talked about supplements and the need for insurance companies to provide them. The man with LHON talked about being affected with a disease. And I talked about the day-to-day-caring for my child and how important MediCare was for her life. The staffer took notes and asked numerous questions. We four felt like we’d made an impact.

The next staffer was either new or simply overwhelmed. He took a few notes, but mostly looked like he had no idea what was happening. We were all crammed into the reception room of Kamala Harris’s offices and people came and went and chatted over our heads as we tried to give our presentation. I couldn’t blame the poor guy; it was Thursday and all week people had been yelling about the GOP Healthcare Bill. Everyone was desperate to go home for the 4th of July break and I suspect at 10 am he’d already worked 5 hours.

From the Senate building we walked across the Capital grounds toward The House of Representatives Building We had to take the long way because the Capital building was blocked off by armed military police. Our local escort shrugged it off;  road closures and the military on alert was just an ordinary day in Washington DC.

At the Offices of the House of Representatives we gave the same presentation, this time directly to Judy Chu. She was extremely kind and appeared interested in what we had to say. Here was a real pro, someone who could listen to people talking health care during a week the words “health care” made people scream. At the end of our meeting, I thanked her.

“I really appreciate how hard you and other Democrats are fighting for people with disabilities like my daughter.”

She shook my hand and smiled. I wonder if politicians get many thank you’s?

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Then we met with a Republican staffer from New York who was obviously fed up with the words “health care” and gave us 4 minutes of his time. By then our group had split up. I met my Representative, Jared Huffman, on my own. Our meeting time had been changed but I didn’t know, so I sat with a staffer and talked about my daughter. By then it was 3:00 and my brain was so fried I couldn’t remember my part of the presentation, let alone how to explain Mitochondrial disease and the National Institute of Health. I’d walked up and down and around the halls so many times I lost track of which building I was in. But this staffer sat at the table with me, smiled warmly and asked questions. And then Jared Huffman himself stepped out of a meeting for 2 minutes to shake my hand. I wanted to hug him, but instead, I thanked him.

Walking around those buildings, I passed office after office of congresspeople from every state. Climbing the stairs, I detected that the marble steps closest to the hand rail were slightly grooved; thousands of footsteps over hundreds of years had slowly worn down the lip of each step. Every conversation crashed into the next, echoing down the stone halls. There wasn’t a moment of quiet, not even inside the offices where we met people who at least appeared to want to help. Once, I used the wrong elevator, accidentally hopping on the one reserved for elected officials. An older gentlemen in a nice suit smiled but didn’t reprimand me. I wonder which state he represents?

By the end of the day, I was worn out, confused, and ready to finally check into my hotel room for a shower. But I was also exhilarated. Here I was, actually talking to people in Congress about healthcare the same week Congress was debating healthcare. I shook the hands of people fighting for my daughter. I don’t know how they do it, day in and day out.

And I have a better understanding of our democracy, at least the ideal of democracy. A thriving democracy is more than just voting every few years; it requires participation. It needs us to talk and listen and debate and argue. We need to interact with our Senators and Representatives and make sure they hear us. Otherwise the only people they’ll hear are the people with the checkbook.

I love Washington DC. This makes the second time I’ve been there since January and I have a feeling I’ll be back.

Posted on in disabilities, mitochondrial disease, teaching, vision impairment

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.

 

Posted on in disabilities, mitochondrial disease, special needs, strength

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.