There is an insecurity and vulnerability in publicly sharing one's most intimate thoughts about their condition or the ways in which they struggle. I often feel strung up for all to see - airing out my "dirty laundry".
It can be extremely taxing and many times I could think of things I would rather be doing with my time. I feel like a broken record and because I talk of it so often I find myself trying to find balance between "Kam with HIBM" and "Kam". At times the lines blur leaving me tired.
Growing up we think of all the things we want to be or do. Being a patient advocate and sharing an abstract concept of a slowly progressing condition is something that never comes to mind.
There is a satisfying aspect of doing or experiencing something you would have never imagined or planned, but there is also a bittersweet taste. I never thought I would be drawing or telling stories about my life. Quite frankly, I never thought my life was interesting enough to share. I felt like I was a very regular girl and shyed away from attention as much as possible. In fact, most of the time I do whatever I can to deflect what I do and dodge attention. Growing up I mostly wore plain colored clothes and preferred to blend into the crowd, rather than standing out.
I remember the day I was diagnosed with my final and real diagnosis, HIBM. It was 2004. At that time all my doctors told me to retire to a chair and that my condition was far too rare for any researcher to want to touch it, let alone any chance that I would see treatment in my lifetime.
That all changed when I moved to Los Angeles, California in 2007. On a particular summer afternoon I came across an article starring a pair of brothers who had more than ten years ago founded an organization, ARM, dedicated to increasing HIBM awareness in the general and scientific community. These brothers had HIBM and to my luck were doctors and research scientists as well. Immediately, I contacted one of the doctors and invited myself to meet him later that week.
I remember the exact afternoon I met Dr. Daniel Darvish, an HIBM research scientist and an HIBM patient, and to my surprise he was already in a powered chair needing assistance to grab mere sheets of paper. I was still walking then.
I had read the potential prognosis of a wheelchair but reading it and seeing it were two very different things. He was compassionate and said, "You couldn't have found us at a better time...treatment will happen within your lifetime." and preceded to share the history of HIBM.
From the beginning of their enormous endeavor and undertaking they had met hundreds of patients, a rarity for HIBM'ers when so many are lucky to meet just one patient. He had made it his life's work to bring attention to HIBM and then later realized the possibility that starting his own research lab could render faster results. He was the most determined person I had ever met and I could do nothing but appreciate such a determined spirit, especially when most deflect responsibility and potential.
As he spoke to me he spoke assuming HIBM would be something that I would want to hide. He asked, "Kam, are you sure you want to be open about HIBM? It's very hard being public."
Confusingly, I said, "What other choice is there, do nothing and watch my body deteriorate?"
"Very good. Very good." He smiled.
I didn't think when I got involved, nor was it for my own personal immediate gain. I was merely resting on the idea that helping and pitching in seemed to be the right thing to do.
He explained to me the culture HIBM is most common in and within that culture most view it as a horrible and shameful condition. It's genetic, you see. HIBM predominantly affects Jewish Persian but also affects a gamut of other ethnic representations. Jewish Persian families don't want a genetic mutation stain on their family and so most hide it. Most do not want to speak of it.
Up to that point the Darvish brothers, and a caucasian patient in the South, who was experimenting with her own personal treatment, were of the few that were truly public.
That very day marked the beginning of my involvement with ARM. I worked to spread and expand awareness within my immediate circle. Aware that I was a designer, Dr Darvish asked if I would like to design a little brochure. It's in my nature to think bigger, so this brochure quickly exploded as an entire branding campaign that I executed for them in 2008.
My idea was it should be patients sharing their stories but I found it difficult to find individuals who wanted to share so I could publish their story in ARM marketing materials. I found it completely understandable that some did not want to be public. It is a very hard thing to do. The physical weakness is open for all to see but the emotional "weakness" is something that is easier to hide.
During the years I was relentlessly public and while the Darvish brothers shared their science and professional selves, mine was more personal sharing. I was no scientist nor doctor, but I was living with HIBM. That was all I could offer. After years of working with them, I decided maybe sharing just a little more of myself is what was needed. My friends and family knew the textbook form of HIBM but did they really know what it was like? If even they didn't know, then how could strangers?
One of the inspirations for this decision of public blogging and art was that I hated that few truly knew about HIBM and the patients it impacts. HIBM is way more than those four letters. It is way more than the symptoms and prognosis.
Through the years I had the opportunity to know the Darvish brothers and what they personally go through, and that knowing made me more committed because I could see how committed they were despite the difficulty.
They aren't perfect, as all of us aren't, but they took on accountability and responsibility and were genuine in their vision and that is what I have stayed loyal to was their loyalty. To know intimately how difficult it has been for them to be so public, facing public scrutiny, judgement, the center of rumors, politics, xenophobia and the prominence that their lack of status and wealth - despite having the brain power - causes a community to look down on them, was and is overwhelming to be in the middle of.
I felt like I experienced the real story and I hated that no one really knew them. It is one thing to deal with a lifelong debilitating and relentlessly selfish disease, but it is another thing to put yourself in the middle of the arena for all to see or scrutinize. I couldn't do anything but respect that.
The Darvish brothers were not concerned about their image, status nor receiving personal scientific credit. The focus was so strong that spending time to write out scientific publication submissions to heighten their name, which is usual and necessary in science, in their eyes, only wasted time that could be spent on pushing HIBM research forward.
I hated that know one really knew them as real people and I hated that people didn't know the stories and the plight of the patients I had begun to meet around the world. That is when I began blogging and soon after began drawing about it.
My friend asked me if I was sure I wanted to be so open. My first and last name combination is the only name in cyber world so if you google my name everything about me pops up with the word "disabled" all over the place. I did think about it.
I wondered, "When I job search, will the company google my name and will they not be interested after they read all about me?"
If you are honest and genuine, I believe things will work out. If a company didn't want me - not that I use that as a crutch for NOT getting a job - for that very reason then I knew they didn't deserve me because I am way more than a stick, leg braces and two wheels.
It can be taxing to share and sometimes I wonder if I should have started this whole endeavor but the good thing about taking a leap is it leads to other unexpected paths. So, just know there is science and advocacy being done on this very rare condition I have and it is being done in a few places around the world and one of them is ARM (Advancement of Research for Myopathies).
When someone tells you that know one will care about you because you are too rare, keep searching until you find someone that tells you they do care.