September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

March 4th 2015 Speaking up for myself

I've thought about the question "how do I want to be treated?" many times.  But it occurred to me that that's actually an easy question to answer:  I want to be treated like myself, like the individual I am.  I don't want people to see me come into a room and think "oh, there's Tamar, and she's got all these problems."  I want it to be "oh hi Tamar, nice to see you."  The real question to ask myself is:

When do I need to speak up, what do I need?

The answer to this question can vary a lot from one person to another, one situation to another.  People with visible problems, for example wheelchairs, or casts on body parts deal with very different scenarios regarding help and self advocacy.  Personally, learning to advocate for myself is a process, a learning experience.  For me right now, there are four things that tend to come up regarding outings (which is when issues come up the most):

1) Transportation
2) Food
3) Taking a break
4) Seating

I should, and want to be the one, to make choices and decisions about what works for me.  Some may disagree with this, but I think in order to have a measure of independence, a lot of it is up to me.  This is the reality of having a disorder that isn't visible, AND that's difficult for others to "get".  Some outings I end up not participating in, some I participate in and rely on my coping skills (which I'm constantly learning), and sometimes I have to speak up.    I might discuss something with my therapists, but in the end, I have to decide.  It would be nice if people knew what I needed, but I've come to realize that for me that's not realistic.  People are not mind readers, and I am the one living with my disorders.  My vision disorder is somewhat unusual, and I'm the one with a restricted diet, so I have to speak up about what I need, for what does or doesn't work for me.  

I don't see myself as someone defined by my medical conditions, my disorders are not who I am, but I do recognize that my medical challenges have a real impact on my life.  I think one of the best ways to counteract stigma is to ask for what you need, and do what you need to do, as long as you're appropriate.  We all want to be independent; I definitely have a very strong streak of independence, and I want to do as much as possible on my own.  An obvious example for me is driving.  I can't get into a car and go wherever I want to go.  But I can plan with a family member, or order a taxi, to get someplace.  I use a variety of hi tech stuff to give me access to the written word.   So acknowledging my limitations and getting help actually makes me the opposite of helpless.  I have to remind myself of this sometimes.

When I think about doing an outing, depending on what the outing is and where I'll be, I may need to think about where I can take a break if needed.  Sometimes I can figure this out on my own, and sometimes I need to talk to someone.  An example of when I need to speak up is attending a high school theatrical production, because where I sit is important.  For the occasional times when a meal is involved, I find out who to talk to about my dietary restrictions.  If I'm in a social situation, I might sit down when others are standing, and not behave as if it's an issue.  When I attend adult education offered by my congregations' Sunday School, I like that Rabbi Adam always offers me any written material he's prepared.  I take the handout, put it under something so that I'm not constantly staring at it, and occasionally look at it.    

I have to advocate for myself at home as well.  In addition to noise, movement can be difficult for me, so I might ask one of my daughters to stop pacing the room while talking with me.  Following them with my eyes gets difficult, or looking elsewhere and then back at them, so I ask them to please stand still.  I'll ask Ron while we're sitting and talking, to stop moving his leg.  Sometimes Leena or Cara want me to do something or look at something, and we have to plan when it will happen.  We may also have to plan a bit how we'll do it.  I've given explanations to Ron or the girls sometimes about a request I make, and sometimes I talk things over with them.  It's a work in progress with them to understand my particular needs, even as I figure things out.

I always hope that some people will make the effort to try to understand, but one of the most important things people can do is recognize when they don't really "get" it.  Presuming you understand something when in fact you don't usually leads to problems, and if you admit you don't, then there's room to learn.  It's frustrating to have disorders that are hard to explain, and hard for others to understand.  I'd rather have problems that are at least easier to explain, and understand, but I don't.  I hope over time, as I continue to write, and continue to advocate for myself in various situations as I slowly make progress, that I'll get better at explaining. 

I'm grateful that for the most part my family is accepting, and doesn't complain, occasionally asking questions to try to understand.  I'm also glad to belong to the Kol Hadash community where I can still participate in some things.  Whether at home or out, special requests or accommodations need to be met with compassion, whether the reason for the request is understood or not.  Sometimes politely asking the reason is OK, though I feel the person being asked is not obligated to answer if it makes them uncomfortable.  Being comfortable talking about whatever you're dealing with varies from one person to another, one situation to another. 

As I go through my journey, I think about those I interact with.  To me there are what I think of as degrees of understanding, from those I live with, to those who know me to varying degrees, to just anyone I interact with.  When I'm with someone who has some understanding of my limitations, it's nice if they remember something from a previous situation, and "get" it.    I also fully recognize that no matter what, there are going to be challenges that come up, and I will deal with some better than others.  Figuring out how to advocate for myself will always be a work in progress.  But I need to keep doing it because if I took away the times when I speak up, and everything I try to do, then I'd really be in trouble.  Ultimately, I want to be able to do things, be with people and be myself.  






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