woman wearing cloth masks stands at the door of her business, holding a sign reading come in, we are open

So, it’s once more time for A Chronic Voice’s monthly linkup. This month’s words are feeling, grueling, tempting, running, and mending.

This month, I’m taking stock, processing life lessons, and looking ahead towards creating an even better future for myself.

Feeling the need to reinvest in myself

It’s been a weird year with COVID-19 and everything that’s come with it.

I’ve posted every single week since I’ve started this blog.

What I haven’t done though, even though I’ve intended to, has been to more actively sell products and services, really go out of my way to reach for more readers, or create more online courses.

I’ve been honing my writing craft a little, with all the practice I’m getting and each post I’m putting out, but I haven’t been growing the blog as a business as much as I’d like.

I freely admit that I’m a driven person and that I tend to feel like I’m not doing enough, but I decided that the time has come to more deeply invest in myself. So, I am.

I’ve worked out a plan with a business coach, and she and I are going to work together on helping me overcome my own blocks and fears around earning money and really building out my online business.

I have been using this time to heal, but feel that I have not pushed myself enough. Now, I am going to step up. Nigel here represents how I have been.

Yes, I am also a business. I offer coaching and online courses—currently, I have a course on Functional Neurological Disorder(FND), the condition I have, and a course on applying for SNAP benefits while protecting your mental health. I plan to launch a similar course on LIHEAP benefits as well.

I’m also offering coaching services in two different areas: medical care and self-advocacy, and applying for or utilizing the US social welfare benefits.

Currently, I have clients in the second program, both of whom are on disability benefits and starting their own businesses.

I’m helping them to know what their income and asset rules are for any/all supports they receive so that they can plan when, if, and how they stop receiving benefits, instead of constantly worrying about losing their benefits if they work.

I’m really excited by this work, but haven’t been drawing enough attention to it, so don’t have anywhere near as many clients as I’d like to.

Overcoming a gruelling emotional battle

I have been through a lot of heartache over BiRequest, a bisexual discussion group that was the center of my social life for a long time. Over a year ago, the president of BiNet USA, Faith Cheltenham accused a friend of mine of inappropriate sexual behavior—apparently as some form of power grab.

This set off a firestorm within BiRequest, and I got burned, badly.

I lost multiple friendships and had many deeply uncomfortable moments. A year ago, I was working to rebuild the leadership of BiRequest into a functional committee, and two months ago, I chose to step back entirely.

Last August’s meeting, a member of what became the leadership committee demanded that I ‘calm down’ when I became symptomatic in his presence. That was an act of ableism.

He presumed that my movement symptoms (which I cannot prevent and takes time to regain control of) were instead an action that I was choosing to make. Less than a week later, after another intensely emotional meeting, he flagged me down, and when my legs collapsed out from under me, he rolled his eyes and started to walk away.

He painted himself as the victim (black egg) even though I did nothing to him, and he loudly reacted in a negative way to my being symptomatic.

After that first incident, I became symptomatic whenever I saw him or heard his voice. This meant that every meeting, I shook or thrashed or tremored whenever I saw or heard him. It was pretty uncomfortable, but I kept going because I wasn’t going to let his behavior keep me from participating.

When the meetings were in person, it was relatively easy for me to avoid looking in his direction. When the meetings shifted online, his presence loomed larger and I couldn’t focus on others as easily.

When my complaint was finally heard, the other members of leadership decided not to hold him responsible in any way, and I was left feeling deeply betrayed. I also was, and remain, concerned that he will continue to make choices and take actions that are hurtful to others.

To make matters worse, the friend who was accused of inappropriate behavior was not allowed back into leadership circles, even though he was a great facilitator and never did or said anything inappropriate within the group’s space.

I have stepped away from BiRequest, and no longer participate in meetings or leadership, and it has done me a world of good.

I still think about it, and am sad to have lost it. But I hold out some hope that at some point things will change and either I will be able to feel safe participating again, or I will find another group that gives me similar good feelings.

Tempting fate by participating in life

With all of the COVID-19 fears going on, my spring and summer looked very different from how they usually do—the biggest difference being that while I normally spend a lot of time in the summer with my sister and her kids, this year, I haven’t seen them in person at all!

Our usual activities were not available, and I alternated between worrying about GETTING COVID-19 from them and GIVING them COVID-19.

However, it wasn’t all bad. I was able to be pretty consistent about getting out and exercising, walking on the nature trail by our home most days. If I went out at times I thought there might be some crowding, I’d bring my mask, but it mostly sat in my pocket as I breathed the fresh air and admired the view.

Lovely day and shot. From under the bridge, I managed to catch a swallow flying away from the nests under the bridge, while a great blue heron hung out in the middle of the tidal stream.

While the pool at my mom’s was closed this year, and family beach trips were cancelled, Al and I did have multiple trips to a beach closer to us out on Sandy Hook.

We debated and discussed these trips, but after purchasing a couple of windscreens (each about 3 feet tall and totaling 12 feet long), we set out a few weekdays this summer, leaving our apartment between 6 and 6:30 AM.

We were on the beach (masked for the walk) no later than 7 AM, and took advantage of the early hour (and fewer people) to stake out a generous space for ourselves, with the windscreens forming a protective U-shape around us.

With 8 feet of space on each side and behind us, and the waves and just enough beach in front of us, we relaxed a bit and hung out, maskless, to enjoy the sun, wind, waves, and water.

We’d have breakfast and snacks (sometimes lunch), and I’d go swimming when the water seemed open enough (I wasn’t going to wear a mask in the water, so only went in when I felt I could maintain a safe distance from other swimmers), and we had some great days by the water.

If we started to feel overly crowded or like we were hogging too much space with our setup, we packed up, masked up, and walked back to our car.

We ran into a few friends out there, and caught up—going to the beach was one of my first “going out” activities since the lockdown started.

Since then, I’ve also had a few beach evenings with a friend, sitting by the water and drinking wine. She’s a nurse and worked at an ER recently, so she’s extremely cautious, even wiping down the passenger side of the car before I got in.

We wore masks and had the windows down for the ride to the beach, then set up our chairs 5 or so feet apart and then sat and chatted while the waves rolled and the wind blew.

We have been together for 10 years now—that is definitely worth celebrating!

Al and I went out for dinner for the first time to celebrate our anniversary mid-August. This was our first meal out (as opposed to getting takeout and maybe eating in a park or near the restaurant) since February.

He’d asked around and been guided to a restaurant on the river that had set up a tent with a view of the water.

We had a cloth tablecloth and napkins, though our drinks were served in plastic glasses.

The waitstaff wore cloth masks, and the tables were distanced enough that I felt safe (we also were in the far corner, closer to the water).

We’ve also returned to doing dinner with Al’s parents on Sunday nights. One small step towards normality.

After much discussion, Al and I recognized that his job was the biggest safety risk outside of everything his family was doing (his parents watch the grandkids, his sister works from home, and her husband is doing financial work inside of a dental office where everybody is very safety focused), so after his parents affirmed they were comfortable with the risk, we agreed to come for dinner.

This past Sunday, his parents made empanadas, and the whole family was there. It was a wonderful evening—and we really enjoyed seeing his niece and nephew, who we hadn’t seen since July.

There are still a lot of things we’re not doing, and I haven’t seen any of my friends from NYC since early March, and that’s unlikely to change anytime soon.

On the plus side, I’ve had some really good phone conversations (and video chats) with a lot of them, so I’ve deepened many of my surviving relationships (as I met pretty much all my friends in the city through BiRequest).

Running into a new space

Now that I have stepped away from BiRequest, I’ve done some searching for a new group to put my energy into.

I’ve become focused on The Poor People’s Campaign, which fills my desire towards activism and is a group that intends to embrace my identities.

Just like Rorschach decided to quite literally climb the walls in our apartment, I’m trying to climb to new heights and explore new options in my life.

Why do I say intends to? Well, because that is the stated goal.

Poor People’s Campaign self-describes as a fusion movement, and they are designed with the intention of embracing and empowering marginalized identities with the goal of lifting us all beyond poverty.

Most minority identities are disproportionately poor. Most disabled folx (also a marginalized identity) are also poor.

Many members of the LGBTQ community are poor, especially those with multiple marginalized identities (non-white, disabled, etc). So the Poor People’s campaign should support my whole being, but the reality is that they, like many organizations, are not as open as they intend to be.

I’ve already noticed some ignorance and lack of understanding of what true accommodations should be like, and so I have made it my goal to help ensure that the entire disabled community can and does feel welcomed and considered inside the Poor People’s Campaign.

New Jersey is very newly involved in the group, so I’m doing my best to have my state be as inclusive as possible from the beginning, and intend to build out a group to help all states understand what it means to be accessible to all members.

Mending my mental and emotional health

I have predominantly been hiding at home throughout the COVID-19 pandemic. I have not seen my nieces and nephews in person since February, due to the combined fears of infecting their family and getting COVID-19 myself. We’re in New Jersey, so the worst for us was in the beginning, but it’s all still pretty worrisome and I definitely am still concerned and limiting my interactions with folks.

The stresses from BiRequest increased my anxiety and symptoms multiple times, and each time, I slowly readjusted my mindset, dug into the deeper reasons why, and figured out how to make peace with myself about it all. My therapist and I have had a lot of conversations about it too.

BiRequest was an emotional center for me. It was where I went when relationships I was in got iffy (or less reliable) and a consistent space to find new connections. It, for me, was a wellspring from which friendships sprang.

Since last June, when I became aware of the accusations, BiRequest has become more and more precariously balanced. It has become toxic for me, and I have backed out, to protect myself from the collapse I fear will occur.

The disharmony last August set off my anxiety pretty severely and had me catastrophizing multiple events of the time. After the group decided not to penalize the member of leadership who hurt me, I felt a very deep-seated sense of betrayal and was extremely emotional and symptomatic. While part of this was their actions, part of it too is related to my own insecurities, especially around fears of being abandoned.

I made peace with individual friends and did my best to process through, but everything I attended, I found myself retraumatized and extremely symptomatic again.

The decision to leave was the best decision I could make. Since then, without that aggravation, I’ve started rethinking where I can put my energy, and focused on the individual friends I made from my time in BiRequest, as well as being open to finding new spaces in the future.

I’m still also dealing with anxiety from Al returning to work (I generally dislike being/feeling alone, and now Al isn’t home all the time—and is at greater risk for COVID-19), and am slowly shifting from focusing on how to not feel alone to actually focusing on getting work done on my blog, business, and projects.

This is another part of why I’ve hired a coach—she’ll be both another person I check in with, and an additional push towards making my business dreams come true!

I still have a lot of uncertainty and anxiety in the background of my life, but I’m doing my best to keep healing, keep managing, and to keep moving myself forward towards my next steps and maintaining my own healthy balance.

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16 Comments

  1. Given how detailed and well-research your posts on disability are Alison, I know you will make such a success of helping other claims disability in the US. A wonderful way to help others!

    1. I always do my best to be detailed. I really want to help people better manage their processes and be there to give them gentle nudges or helpful information when needed. I’m really excited about the work I’m currently doing, and hoping to do more of it in the future – I want new clients so that I can help them manage those next steps – I love seeing folks succeed, and it’s nice to feel like I helped make it happen!

  2. I am a certified wellness coach. But I have not helped anyone yet because with vertigo I cannot sit at the computer long enough to do zoom meetings. So I am just picking up skills I cannot use until my vertigo is managed somewhat. It is great that I decided to learn it. That I achieved it with several courses. I am glad I did. But I cannot utilize them yet. It is my Goal for the future if I can find some way to manage the vertigo.

  3. Nikki – you can do it! You’ve got a good goal, now it’s time to get the right doctors or treatments to help with that.
    I know my sister and Al both got PT to help improve/manage the vertigo each of them experienced from their brain injuries. I know it’s not easy – and that it’s really hard to think clearly while nauseous- but I hope you find the right treatments to help you get better. Wellness coaching is a great idea – we all deserve to feel better and more hopeful about our futures – and working on our physical and emotional wellness are really important for that reason!
    Wishing you the best!

  4. It sounds like you’ve had a tough time but it’s good that you have goals and aspirations. I wish you the very best of luck and I hope it all goes really well. Your trips to Sandy Hook sound idyllic.
    Congratulations on your 10th Anniversary.

    1. Anne,
      thank you so much! We’ve loved our time out on Sandy Hook – the beach has been beautiful! And thank you for those well-wishes – I hope things are going well for you too!

  5. I believe everything you put out there is incredibly helpful and I’m really glad that you’re looking to focus on the business side of what you’re so passionate, knowledgable and good with.

    Also, I feel poor experiences can really jolt us and suddenly makes us more determined.

    I wish you all the very best Alison – good luck 🙂

    1. Thank you so much Shruti!
      Traumatic experiences can often also be a trigger for major change or self-improvement efforts, I agree. I’m doing my best to keep that skew towards the positive for myself, as that’s what I want/need to be doing anyway.
      So, at this point, it’s time to shift from just producing what I can, to also producing high-quality work that others will gladly buy! It’s one step at a time, right? Thank you again for your well-wishes!

  6. You are taking some very brave and promising steps to move beyond this frozen place of COVID-19. I’ve not gotten here, albeit, I guess I’ve made some steps towards growth. This past two weeks, though, I’ve gone backward. I’m struggling with eating and exercising (not a helpful combo). I’m going to use your steps to motivate me to get my act together.

    1. Katie – thank you so much! Celebrate each positive step you take – you deserve to be happy with yourself and your actions! Sorry that food and exercise have been a struggle of late, exercise has often been a struggle for me as well, which is why I’m doing my best to keep up with my goals on that front.

      So glad you’re finding me process motivating – it’s all about making the best decisions one can in the moment, and then proceeding from there!

  7. Congrats on such a brilliant and thoughtful post, Allison. It certainly sounds like these times have been challenging for you, but despite this and with strength and resilience, I am glad that you are finding ways to rebuild your life and move forward. You are an inspiration to those within the FND community!

    1. Thank you Laurie!
      All anyone can do is their best…I really want folks to get the help they need with their mental health intact (or at least not further damaged).
      Making money from your blog can be challenging, I am still feeling my way myself. It does make sense for those of us with disabilities to be our own bosses if we can handle it.
      I wish you the best, and if I can help you, let me know!

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