Struggling to make sense of it all

As a writer, my job is to put words together to make sense of it all and inform others about some of the challenges people with disabilities face.

Due to recent events in my life, I’ve been struggling to find the words to convey my thoughts and feelings. For example, when a friend asks how I’m doing, my answer is typically, good, you? Or ok, you?

When in reality, it’s not true. At least, not 100 percent.

I’m okay because I woke up today in my own bed. So, physically, I’m ok. However, that’s a different story regarding my mental health.

My response to the above question feels automated or robotic. There are two main reasons why I do that.

1. I lack the energy, both physically and mentally, to type what’s happening in my life and what I’m feeling or thinking in regard to whatever’s occurring.

2. Very few people fully understand what it’s like to have 24/7 care and its challenges.

Let’s break it down.

As most know by now, my physical disability affects my speech. I can physically talk well, but many, including my friends and caregivers, often have difficulty understanding my voice. Because of that, I mainly communicate online. Communicating online is both a blessing and a curse, which I’ll explain later in this article.

During weekdays, most of my time is spent emailing people. Whether it’s regarding staffing, ordering medical supplies, or making appointments. On top of that, trying to deal with issues.

By no means I’m looking for sympathy. This is just part of my reality.

Needless to say, after a long day of emailing, I don’t feel like typing afterwards. Most nights, especially during the winter, I either listen to music or watch shows or movies. On a good day, I have enough energy to chat, post on social media etc.

The second reason is the lack of people unable to relate to my situation. Most PWDs don’t have 24-hour care. Throughout the day, they may require assistance for a few hours, but not 24/7. After a few hours, their caregiver leaves, they can be left alone in peace or go out without needing someone.

I can’t do that, nor have I ever been able to.

Over the past several months, finding staff to work has become increasingly difficult. Most of my time during the day is spent trying to figure out who’s working or if someone’s coming in.

I’ll be going to the ER again if no one's available to come in.

As someone who also has anxiety, it weighs heavily on my mind, especially considering I recently had it happen.

I do what I can to avoid being sent to the hospital.

Not many understand that, or perhaps don’t want to. At least, that’s my interpretation.

I think Social Media plays a role in that. While in many ways, Social Media has opened up many doors for me, it also closed doors as well. In my experience, it’s easier for people to read and like my posts instead of taking the time to reach out, and actually connect.

This is especially true if I post about my mental health. I have no problem getting 50-100 likes, but few (if any) reach out.

Many are afraid to talk about mental health, partly out of fear of being judged or ignored. To make matters worse, very few are able to get the help they need.

So what are we supposed to do?

Well, for one thing, we need to normalize talking about mental health. At times, I’m guilty of not talking about it. As I mentioned earlier, it’s easier for me to simply say or type I’m doing ok instead of going into details.

Secondly, but just as important, is we need to be kind. When possible, be there for friends, especially if they’re having a hard time. Reaching out shouldn’t be a chore.

Please don’t be that person who just types *hugs*, or thoughts & prayers. That means very little and in some cases, makes me feel worse, It almost seems like you’re brushing me off.

Before I go this week, I just want to say that I’m not going anywhere. Even though I’m feeling a bit overwhelmed these days, being able to write on a weekly basis is one of the things that I really enjoy. I’m confident that things will settle down soon, which hopefully means I’ll have more energy.

Also, thank you to those of you that have reached out. I realize that many of you have busy and different schedules. It’s also important for me to point out that due to mental health or other reasons, some of you may not be able to reach out or communicate properly.