I know, this is supposed to be a blog about disability and my thoughts on it, and yet there's always all these food pictures on here. How does that relate to disability? I know, right?

Well, it does, because it has to do with the person living out the disability and the disability itself.

I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.

As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard.  My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours, I was still in the air. 

Like many grandmas are, she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandma's love for her "open door" policy -  as she greeted guests with welcoming arms.  She always had some kind of dessert or Entenmann's in the bread box for those "just in case" visitors.  She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.  

Holidays were always a big deal and her Thanksgiving dinners are something I really miss. She cooked everything. Every year she would make as many as nine different pies - all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. Only being able to stand for shorter periods, she would make the squash, cranberries, etc., earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday.

I remember she would scoot around the kitchen in her walker and when I'm cooking, holding onto something I love but refuse to compromise quality, I experience what I saw in her.

My grandma didn't like to sacrifice a dish so  she figured out ways to outsmart her body. I myself have adopted this tactic I sometimes cook big batches and freeze it. Or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I usually cook over an entire week, doing a little here and a little there. It cuts down the stress on my body as it progresses and can't handle as much.

This past thanksgiving I even made two Thanksgiving dinners. I had already promised to help my upstair neighbors/friend's thanksgiving. We had agreed to do it together since she is the sibling of one of my best friend's family from LA. Their parents are some of the most loving and amazing folks I've met. True big latino family with an inclusive-like vibe. Reminded me of my grandma's style I grew up with. 

My suddenly-visiting-brother doesn't like to share his holidays and would only come up from SoCal if I made a separate Thanksgiving for him so I cooked two Thanksgiving dinners. Don't mind if I do.

As I spoke during my grandma's funeral I recalled our disabled mock races.

Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker.  Neither of us were in good condition to be helping each other but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she.  I was young, she was old.

I guess I would have to credit her with some of my characteristics.

Sometimes I think of her while I'm cooking. I have alot of time to think while cooking.  Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps.

When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing.  At times a Julia Child accent would creep in.

Ok, I still do this today.

"You'll never know everything about anything, especially something you love."  Julia Child

I can never explain how truly torturous it is, at times, to not be able to move like I remember, and at times this stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it.

They'll listen, but then able to go about their life, hopping on their bikes, running, driving. The skies the limit for them but I'm still stuck with myself in the stillness of my body, the same before they came and I can feel my insides in deep want. 

But, it's a temporary feeling. There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability.  

Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable, most fear driven sections of ourselves.  I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want.  

That is the greatest way to learn, to be told that you can't have everything.  

Because of this, I have found that throughout the progression I pick up on new things to do.  When I find myself no longer able to do one thing, I instinctually replace it with something else.  I just want to express myself. I want to express what I can't with my body. I like cooking because there is never an end to the learning process. There is always something to improve upon and I like that challenge. If I'm not challenged, I find myself feeling very bored.

I'm not a foodie, by any means.  I mean, sure I appreciate a good meal, but Jason laughs at me because I don't really eat what I cook. For me it's not about the food as much as it is about the process and the result that the process garners - like gathering people, laughs, intimacy, comradery.

Knowing that I am moving out of northern California, I've been receiving visitors who want to say goodbye and well, "Hello" at the same time.  A few of these have been patients that traveled to see me.  

This is Tara. I recently met her.  I believe she emailed me a few months ago and was interested in meeting another HIBM patient.

She has had HIBM for the past 20+ years, but only correctly diagnosed with HIBM a year ago. This is not uncommon. Many patients go for years without a correct diagnosis including myself. All four of her siblings also have HIBM. There are many families with children who inherited this strange HIBM gift and every time I hear of it I can't imagine what it is like for the parents to have all their children express HIBM.

Besides her siblings I believe I was the first HIBM patient she met. I invited her over and made a little pasta lunch for her and her partner, Ron. When she arrived Jason went outside to see if they needed help walking down the simultaneously short but longer than ever walk.  I was cooking in the kitchen looking out the window as she slowly proceeded under the lemon tree on a very beautiful afternoon.  

She entered the doorway along with her partner at her side. I could tell she was tired from that long walk. She took a break in the doorway and we chatted from opposite  ends of the room. I was not able to quickly walk to her and give her a midwestern hug like I would normally would do, and she was able to quickly walk to me.

One of the things with physical disability, it's hard to physically express oneself like you normally would. Sometimes I feel like I look reserved and stoic but I"m really not. HIBM does that to me in a sense. 

I immediately liked them as they came off very warm. I like warm people. With people once you get passed all the unspoken, unecessary formalities, it is the warmth that really counts.  As they rested in the door way we started setting the table with the food. 

Ron said " I bet alot of things happen around this table."  

Huh, I guess it has. I think that was one of the nicest compliments I have received.

I'm always glad to meet patients and for many I am one of the first patients they have spoken to. I remember how hard it was when I was going through the diagnosis process and being told I would never meet a patient in my life.  I'm happy to meet others because of this reason. There is no reason one should go about this all alone.

This is Yoshi and his sweet wife Akane.  They came over for dinner a few weeks ago as well.  I made them a Korean dinner spread and we had a great time catching up. It had been awhile since I last saw them.

He was the very first Asian patient I met back in 2008. I was living in Los Angeles and he in San Francisco. He was contacted by patients with HIBM (In Japan it's called, DMRV) asking him to get into contact with me. He served as a translator while both I and Japan were in the connection process.  

Upon receiving his email we drove to San Francisco to meet him and his wife back in 2008.  He has had HIBM for 20+ years as well and still walking. His brother also has HIBM.  He is 70 + years old.

In 2007-2008 I helped build and launch ARM's new branding image and it was the beginning for me in meeting a whole world that was tirelessly working on HIBM treatment. My hometown doctors told me no no one was or would ever being working on this rare condition.  

I began working probono for ARM and that is how I met the Darvish brothers' the medical doctors who have HIBM and on so many levels has had a significant role in advancing research, interest and the treatment arena that we are slowly embarking on. He's also one of the only researchers that dedicate absolute full time to the research, unpaid at that, while other labs have other projects they work on besides HIBM.  

But besides them, there are other researchers working on HIBM treatment around the world, all approaching it in slightly different ways. It's very exciting and very interesting to perceive these separate lives involved with the same subject - HIBM.

During the launch of the new ARM image, we organized a gala and I invited some of these research scientists to join. In my naivety it seemed better for everyone to work together but as I learned more about the process I realized unfortunately it doesn't always work that way. Money and name is far more important and everyone seems to hide their work.

One of the researchers I emailed and spoke with was Dr. Nishino; a young research scientist in Japan who is also working on HIBM (DMRV).  I invited him and he politely declined, but forwarded a group of Japanese patients to me. He suggested that they contact me and form a group like we had in the United States.

And that is how I met Yoshi and ultimately traveled to Japan to meet this group back in 2008.  Yoshi contacted me and cc'd Mayu, a designer and a HIBM (DMRV) patient. She was very new to this HIBM experience.  We connected right away and I felt that she was lovely. She told me the action that was happening in Japan and I was very encouraged and proud to see so many patients that were combining and forming to make a difference in their own cause.

They had questions about fundraising and general questions about running an organization.  Fundraising for health is not common in Japan. Their way is through the government and they were actively working towards being noticed by their government, collecting signatures and trying to make a difference for the general disabled community.

After 2 months of corresponding with Mayu through email I told her I was going to visit Japan to meet them all. I bought tickets and a few weeks later Jason and I were in Japan with a long list of daily meetings. I was impressed that the patient group (PADM) were active in their own destination and wanted to meet.

Many patients travel to meet the allocated scientists working on HIBM; Israel, Japan, Texas, California, but I travel to see patients. It's good for patients to know there are others going through this rarity and above all just because you are a patient, it doesn't mean you can't make a difference. In fact, I've always thought it was the patients who could make the most difference, not only in their own treatment, but perhaps for the greater whole including disability awareness.

It was a truly wonderful and busy visit.  The patients were friendly and amazing and forged new friendships through the brief travel.  I learned alot about their world and I tried to share mine as best as I could. I had a translator with me, and. In general there was definitely a language barrier, but even that was subjective. I think we understood each other on levels that most people don't understand even when they speak the same language.  I'll never forget them and Japan and I'm so happy that in their end of the world they are doing their best. That is all one can do.

I believe all the hard efforts will soon come forward in treatment form, and in years to come the future HIBM'ers may never have to write about their debilitating bodies in blog form. Perhaps in a distant space they will be running and walking again.