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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 it? I know, right? Well, it does, because it has to do with the person living out the disability and the disability itself.
Again, it's been awhile since I've posted. 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. Like many grandmas 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 grandmas love for the 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" stops. 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 is something I really miss. She cooked everything and every year would have 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. I 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'n cooking I experience what I saw in her. She didn't want to sacrifice a dish so figured out ways to outsmart her body. I myself have adopted this tactic. I sometimes cook big patches and freeze it or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I may cook over an entire week-doing a little here and a little here. It cuts down the stress on my body as it progresses and can't handle as much. But, darn
As I spoke during her 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 the absorption of 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 could never explain how truly torturous it is at times to not be able to move like I remember and at times it 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, and I'm stuck with myself in the stillness of my body, the same before they came, while my insides come raging out 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 section 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 something.
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 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.
Knowing that I am moving out of northern cali, 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, not being able to quickly walk to her and give her a hug like I would normally want to do, and her not being able to quickly walk to me.
I immediately liked the couple 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 had ever received.
I'm always glad to meet patients and for many I am one of the first or second (the first being Dr. Daniel Darvish from ARM) patient 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 (below) 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 (there it is called, DMRV) asking him to get into contact with me. He served as a translator while both sides 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 despite what my hometown doctors had told me. 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 to 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, 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 it doesn't always work that way...and that that was ok, too. 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 me to a group of japanese patients that he had met. He suggested that they contact me and form a group like the United States had.
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, like myself, 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, and if I could at all, encourage them.
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 could make the most difference-not only in their own treatment, but perhaps for the greater whole.
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 is subjective. I think we understood each other on levels that most people don't understand even when they speak the same words. I'll never forget them, 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...instead they will be running and walking.
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