So, it’s once more time for A Chronic Voice’s monthly linkup. This month’s words are bothering, demanding, nourishing, telecommunicating, and tolerating.

This month, it flowed out as the stresses I’m acknowledging in my life and how I’m muddling through.

The negative ramifications of the word ‘bothering’

The word bothering, well, bothers me. The Miriam-webster definition of bother is ‘to annoy by petty provocation’ or ‘to intrude upon’ .

It implies negative intent in the act, or that it interrupts something more important.

My partner uses the word somewhat often, and it tends to feel like he is belittling himself and his activities in doing so. We live in a small apartment which makes it easy to distract one another, and he’s much better at maintaining focus despite distractions than I am.

I want him to be able to enjoy himself, but I also need to get some work done.

The noise from his games distracts me from my work, but it’s not annoying in and of itself – there have been days when I’m playing games and sitting by him, and we both have his game’s sound on as he plays. In fact, some games, I become immersed in the storyline. Other times, he’ll start watching the news, which sucks me into focusing on that, rather than my work.

I just wish that the term ‘bother’ didn’t get used so much, as I never want to view his interactions with me in such a negative light.

I recognize that I’ve been especially easy to distract lately, and am trying to manage it – but I don’t want to put down his life as a ‘bother’ but rather recognize the usefulness of headphones and relative silence in helping me to stay focused.

Telecommunicating with my doctors

I’m doing my therapy sessions remotely. My therapist started this mid-March, and we have been rolling forward with it every since. Al is generally in the other room, overhearing these conversations, which feels a bit strange, but doesn’t censor me as he and I have no secrets.

I honestly haven’t had many additional medical appointments.

My only regular doctors have been neurologists – one who manages my FND and another who is helping me with my migraines.

While seeing my doctor in person feels more natural, video appointments require a lot less energy

The one helping with my FND had taken a leave of absence in the fall(after referring me to his colleague for my migraine), which had worried me, but I did my best to put it in the back of my mind.

When he and I talked in June, I learned why he’s taken a medical leave of absence.

He’s been diagnosed with cancer.

He reassured me that he plans to stick around for a while and that what he’s dealing with progresses relatively slowly.

The good news is that I can keep seeing him.

The weirdness is that he is my second FND expert to have cancer. I was diagnosed by Dr. Mazzoni, who took a leave of absence due to stomach cancer, then returned for several years.

When Dr. Mazzoni moved to Missouri, he recommended seeing Dr. Schneider, so I did. He’s the one who is now dealing with another form of cancer. It’s odd and a bit disturbing.

I know that I can manage things whatever happens, but it’s been a bit unsettling to feel the emotional echoes – and the fear of once more losing my most valuable medical resource(a caring neurologist who deeply understands FND). I’m feeling better now that I know what is happening, but I am worried for his health and am balancing that fear with the knowledge that I don’t need to try to replace him now.

Demanding equal rights

I have been very closely following #BlackLivesMatter and deeply support the defunding of police and breaking down the systems that perpetuate racism here in the US.

I’ve been putting together more posts specifically related to these issues of equality, and doing videos on my Facebook page on the topic as well.

June was also Pride month, and as a bi person, I’ve been very aware of the discrimination that bi people face both within and outside of LGBT spaces.

Any steps taken towards creating a more equal space, one with less discrimination based upon race, is likely to also benefit other minority identities, such as queer folks and the disabled community.

Both identities intersect with the black identity, and I want to take action to support black queer folks and black disabled folks.

These are the identities that I can best understand(as I share them), so I have a better sense of what needs to be done to support them.

Due to Covid-19 and my tendency to get sick easily, I am still not seeing most friends and family, let alone participating in the protests in person.

Instead, I’ve been watching events, volunteering remotely, and just pulling my energy together the best way I know how in order to help raise awareness of the issues and to help improve these challenging situations.

I am angry about these systemic inequities, and putting my energy towards supporting truly equal rights, something our national rhetoric aspires towards, but our country has failed to do.

I am finished with tolerating disrespect

I have had to take a large step back from BiRequest, which deeply hurts.

This group has been the center of my social life for the past 16 years, and a space where I learned so much about not only bisexuality, but also non-monogamy, kink, the LGBT community, body-positivity, sex-positivity, racial differences, the celebration of diversity, and the freedoms that nudity can bring.

Most of these were topics that weren’t front and center within the space, but rather, things that individual members felt comfortable mentioning and educating us on, and topics of conversation during or after meetings.

Through this space, I’ve met people from a huge variety of backgrounds, life experiences, races, genders, and desires.

It’s opened up my eyes to so many different worlds that I’ve happily explored, and gave me the space to better understand, and develop friendships with, so many amazing people over the years.

Unfortunately, I no longer feel safe in that space.

I spent the better part of the year tolerating the presence(in leadership) of a man who failed to show respect or consideration to me, and then took that further by behaving in an ableist way.

I participated in our newly created leadership committee, feeling uncomfortable in his presence(including his voice and image), but sure that when my complaint was heard, either he would learn and grow, or he would no longer facilitate meetings.

That has not been the case.

The group’s decision to keep this person in a leadership position hurt me badly, triggering my own anxiety and leaving me no emotionally safe option other than to remove myself from participating in the group.

I thought I was on solid ground, and the only problem was a single person’s behavior. Now I feel like I stepped off into empty air. So, I need to step way back and recalibrate.

I attended one regular meeting in June(we have been meeting via zoom), because a friend of mine was facilitating it and wanted my support. I felt slightly uncomfortable the whole time, even though the small group that participated were all people I felt reasonably safe with.

The last event I attended was our June leadership meeting, which I left early due to severe movement symptoms and feeling like I could not control my anger. With everybody being a face and voice on the screen, I cannot avoid him or get the comfort I normally would from others in the space.

I am done with sitting with my discomfort.

I’ve stepped out of the space, made it clear that I’m uncomfortable facilitating and uncomfortable participating.

I’m not sure if there’s a fix, or what I’ll do in the long term, but I know that I currently feel unsafe in that space, so I need to step out for my own mental health.

It hurts and has left a bit of a hole in my life, but staying there is like holding onto an unhealthy relationship – there’s no comfort left to be had, only pain.

I truly hope that those feelings can change, but only time will tell.

Nourishing my mind and body

I’ve been doing my best to nourish myself, both physically and emotionally.

It’s now the time of year for farmer’s markets and fresh fruit and vegetables, and while I haven’t managed to hit any yet – I want to.

Al’s new job is at a former farmer’s stand(it’s evolved into more of a year-round gourmet space full of fresh fruits and vegetables, with prepared food, florist, and a greenhouse), so he’s bringing me some fresh food from there, which has been wonderful.

I’m being sure to select relatively healthy simple foods to eat, and focusing on having a healthier diet.

I’m also nourishing my mind – reading up to better understand racism and ableism, exploring new worlds of understanding – I’m reading How to be an Antiracist, by Ibram X. Kendi, and also just purchased Disability Visibility, Alice Wong’s anthology of essays by disabled people.

I want to be sure that I’m a good ally for the black community, and that I can consider and support the needs of all different disabilities, and be sure I have the best possible understanding of ableism so that I can help others understand the situation better.

I’m doing my best to develop and maintain a good emotional balance for myself and keep myself on track for a better life.

By nourishing myself, I’m better able to live a quality life and handle the inevitable challenges.

Managing the social and emotional ramifications of COVID19 hasn’t been easy, but by taking care of myself first, I’m making sure I get through it in the best possible state of mind and body.

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8 Comments

  1. Hi, Alison, it’s nice to meet you, I’m new to the blogging world and suffer from FND , I was happy to find another blogger with FND, sounds like there has been a lot going on for you and disrespect can be a difficult one to deal with. Self-care should always be at the heart of everything stay safe x

    1. hi Sarah, great to meet you! Always nice to see a fellow FNDer – we’re being recognized more, but it’s still a struggle, right? I utterly agree that self-care should be at the center of our considerations and am glad you feel the same. I hope you’re doing well, and welcome to the community!

  2. I have appreciated all that you’ve shared on your FB videos this past month. I’ve learned a lot from you already. You are a strong woman who is standing up for yourself and others to make this world a better place.

    1. Thank you Katie! All I can do is my best, and I just keep putting my best foot forward every chance I get. I’m so glad you’very found my videos useful! I want to keep my work as accessible as I can. I know I have a ways to go on that, but it’s all one step at a time!

  3. Good for you that you are taking a stand and leaving a place that you have started to feel uncomfortable in, and once more made it clear that you have felt uncomfortable. It’s never an easy thing to do especially when it’s a place that did feel safe and inclusive and which you felt that you belonged. It’s incredibly hard but it shows just how strong you are!

    1. Rhiann,
      Thank you so much for your kind words. Watching a group I have loved for years turn sour and unsafe has been really painful. It really hurts. There’s nothing I can do but remain true to myself, which means to make it all as crystal clear as I can. Taking care of myself remains my top priority, and there is nothing more to be done at this time. Reminds me of a saying ‘a woman is like a teabag. You never know how strong she is until you put her in hot water!’ I am feeling pretty thoroughly steeped at this time, and just hoping for some time to recouperate.

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