t’s that time again, I’m writing in response to A Chronic Voice’s monthly linkup.
May prompts: upbringing, forseeing, panicking, accessing, soothing
Times are scary and stressful. I am at a strange place in my life, where I am doing what I can to stay positive and hopeful, while at the same time feeling like not too much has changed for me. I’m not afraid of starving or losing my home, or any of the big huge scary things that I know are happening to others.
My partner and I are in a relatively good place in that sense. My disability check keeps coming in every month, both of us got our stimulus checks, and so we actually have more money than usual, rather than less. I haven’t been out in the car for over a month, but I have been going for walks most days on the nature trail by our home.
I don’t have the social connections I usually do, and I miss that, but I’m not touch-starved or any of the really damaging bits there, as my partner and I are together in this, and have our furbabies to keep us company as well. So far, we both feel fine, and while my immune system isn’t quite as strong as the average, I’m not in any of the high-risk categories.
As long as I stay calm, and keep a positive mindset, I should get through all of this alright. I do need to focus on that.
Upbringing
My mother has tended to be a bit emotionally high strung and has become rather germaphobic. In some ways it makes sense, as she also has developed pretty serious issues with asthma and tends to be sick for months if she catches a cold.
With her being prone towards a panicky response and a penchant for overreaction, I’m highly sensitive to situations that can trigger that sort of response.
Fortunately, my father was always a very level-headed and calm person, and he often could manage the worst of mom’s reactions, and he taught me to look at things scientifically and logically.
While my personality overlaps more with my mother, I want to be more like my father on this type of front, and have a life partner who also tends to have that calming effect on me. As much as I can, I use logic and reason as underpinings to my understanding of the world, and do my best to embrace that rational thought process when under stress.
What’s especially interesting is that Al had similar models in his household. His mother also tends to be more anxious and worried about the future, and his father tends to be calmer and more unflappable. In that sense, he’s been trained all his life to be able to nurture and calm his partner, who may be more emotional.
Is this how it works all the time? No. But, it’s been interesting to observe and discuss these parallelles and how they’ve impacted our interactions.
Forseeing
I have to admit that I didn’t pay a lot of attention to the COVID19 news at first. I was aware of it, and I do tend to follow news on things like this, as I have a good enough understanding of epidemiology to know that diseases don’t respect boundaries, planes are breeding grounds for infections like this, and that the possibility of a global pandemic exists. Like most people, I did assume that like SARS and other past possible outbreaks, it wasn’t super likely to personally affect me.
I’ve also read enough zombie series and other outbreak-based books and movies to suspect that numbers reported were likely to be inaccurate and the likelihood of underreporting was much higher than overreporting. Like many, I assumed my government was going to help limit the spread and that I would know if the danger became more severe than would be covered by practicing good personal hygiene and being proactive in mitigating the risk of catching a cold or flu.
In March, I was getting a bit worried about my trips up to NYC, but not nervous enough to not go. When everything started shutting down in the middle of the month, I was surprised, but knew enough about how diseases worked to see the logic and to embrace the necessity of staying home and minimizing contact.
I’ve been following the news, and been more and more disturbed by the logic some people are using. While the stay at home orders feel a bit extreme, I know they also are warrented and appropriate to protect hospitals from being overwhelmed, to minimize the spread, and to help keep the highest possible number of people from getting sick and spreading it.
I also understand that staying at home is only helpful if it’s followed up by testing and following the spread. The fact that that is being delayed and only being minimally implemented angers me greatly.
Those of us who survive can’t move forward until this happens, and every delay, hesitation, and poor implementation is hurting both individuals and our economy. However, rushing in and opening things up before the disease is managed is only going to cause more infections and deaths, and being slow is better than rushing.
Panicking
I know, intellectually, that panicking does nobody any good, especially in a situation like this. I’m watching people panicking on TV and worrying about the possibility of them doing something stupid. I’m hearing others with disabilities panicking and worrying about their safety, and I’m doing my best to keep a level head while managing myself and our little household. It’s all I can do.
Do I worry about catching COVID19? Of course.
I’m not actually doing all of the recommended steps for keeping everything completely safe(like washing down everything after grocery shopping), but we are doing our best to manage and minimize outside contact.
Al wears a mask and gloves whenever he goes out shopping or to pick up food, and I always bring a mask with me on walks(often, there aren’t many people around so I don’t feel the need to wear it all the time I’m out).

Our president’s behavior deeply worries me. He isn’t showing comprehension of how disease works or spreads, is sharing bad or inaccurate information, speaking positively about unproven treatments, and failing to support the important steps necessary to minimize infections.
All of this scares me. I understand aspects of why people are demanding that the economy reopen – they need money, income to survive, and don’t know how else to get it.
Being alone or stuck at home with the same people all the time can become uncomfortable and under stress, it’s easy to be bothered by others’ behaviors.
I really do get it.
But all of this is being done to help keep us all alive and safe, and the better we do at following these rules, the fewer deaths, and the sooner those of us who get through it can get back to our lives.
I recognize that I am not in a high-risk category. Functional Neurological Disorder(FND) doesn’t normally affect the heart or lungs, and doesn’t weaken my immune system as much as many other conditions do.
Accessing
I have had to adjust how I access my medical support. Before the end of March, my therapist had switched to operating entirely online using a telehealth option, and we have adjusted to that reasonably well.
I feel fortunate that I haven’t had any emergencies or major needs crop up during this time, so my only big ‘loss’ in terms of my medical care is that I haven’t been able to get a massage in over a month(I normally get massages every couple weeks) and I won’t be able to get my botox injection to treat my migraine in May. I will be seeing my neurologist through a telehealth program, so we can discuss managing this, but at this point, it sounds like they simply aren’t allowing patients in unless it’s a very urgent matter. I can live with that.
At this point, I’m not super concerned about my ability to access the services I need, but recognize that this is a huge issue for many other members of the disabled community.
I respect that there are many of us in the disabled community who are at much higher risk than I am and I am very concerned about our safety – both physical and emotional.
I know that on average, people with disabilities are low-income, which means we’re also more likely to be food-insecure and financially on-edge. I think a lot about this, but also recognize that while I am not at particularly high risk, I’m also not in the position to offer much financially to help others.
What I can, and do, provide though is information as I research it. I’ve focused on FND this past month(April was FND awareness month), but spent the second half of March offering information and suggestions for protecting mental health(and not panicking) during this time of COVID-19.
I intend to do more of that in May as well.
Soothing
I have been doing what I can to keep myself feeling safe and self-soothing. I’m going out for walks most days, both to get exercise and to have the comfort of being surrounded by nature. I’m meditating most days, and writing down things I’m grateful for. I want to stay in that positive and hopeful mental and emotional space, and I want to keep from feeling too stressed, frustrated, or angry. I want to feel safe,and am doing what I can to stay that way.
Following social distancing and minimizing outside contact is helpful, but after doing that, I need to focus on my mental and emotional health.
Watching the news all the time is unhealthy. I probably watch a bit more than I ideally should, but my partner and I usually follow the news together for a while each day and then disconnect from it the rest of the time.
This lets us stay updated without it constantly being the center of our attention. The rest of the time, I put energy into my self-care, rest as needed, and try to do a bit of work on my blog each workday. I minimize work on the weekend, often spending my time playing games or reading instead.
I’m trying to let myself mentally and emotionally escape as much as possible while not putting myself at any kind of physical risk.
I am a bit tired of all of it, and I am finding that I need more time asleep and more mental breaks, but I know that I am doing everything in my power to keep myself mentally, physically, and emotionally safe.
I need more soothing than usual, but I’ve recognized this, and am doing my best to give myself grace, and be extra forgiving of myself most days.
It sounds like you have everything in order, well done! It was interesting to read your insights about how your parents respond to uncertainty. My parents have always been calm and I grew up in a sheltered environment. In some ways I think that doesn’t help how I deal with my husband’s mental illness now, but I muddle through and do what I can to ease my stress. I admit I am finding lockdown very lonely and stressful.
Catherine,
The lockdown is lonely and stressful, period! No disagreement from me on that. I hope you and your husband and children are getting through this as well as you can, and keep on muddling through!
I do believe that our parents are often who we model our behaviors off of, but we always can conciously choose to work on breaking what we recognize as unhealthy thought aspects. It’s not easy, but can be done. Being calm in the face of stress can be a very good thing, but often is more easily said than done. What I think is most important is to take time to acknowledge your feelings, your emotions and emotional responses, rather than repress them. That doesn’t mean let your emotions rule your reactions, but rather to give yourself space and permission to feel whatever you feel!
Keep on keeping on, ok!
Alison
I think most Countries in the World have not coped with this virus very well, that’s what happens when a threat comes along that’s not expected. We have to find our way to deal with things and coping.
Anne,
Some have coped better than others, and sadly our president has bungled this badly. Holding out here and waiting for widespread testing to be available before I consider a return to the larger community, no matter how much I miss it!
Its a great step where you see you need more self soothing. Those internal messages can get drowned out easily when the news is on a loop. I hope you find something fun that works for you and the family x
Niamh,
Thanks! I’m still working on it, but feel like I have things somewhat in hand. Al and I are getting through day by day, for now one of our struggles is finding movies and shows to watch together with dinner. I am hoping this safely ends sooner than later, but safe is my watchword on this!
Hope you are doing well!
Alison
Hello again Alison
Another terrific post again this month. You have captured the uncertainty and mood of this pandemic, which is being felt by so many. But it certainly sounds like you have things in order and coping with the situation despite everything. I agree though that having the news on all the time isn’t a great thing like you I try and keep on top of what is happening and switching off afterwards. Keep strong; you certainly sound like you are doing all the right things!
Rhiann – thank you so much! I’m doing my best, but it remains a struggle. I’m feeling a bit unproductive and things I generally enjoy are starting to pall a bit, but I’m just going to keep on keeping on, and keep doing my best. I hope you are getting through this as well as you can!