What I Need and Don’t Need
This week, I am typing my post because I knew what I wanted to say couldn’t be broken down well into a short video and long videos don’t upload well. I’m also publishing early because I have a busy weekend ahead of me and I know it’s going to take up spoons.
Being on TikTok has actually exposed me to a lot of really amazing disabled content creators and listening to their lessons and struggles has really helped me a lot lately. I am finally coming to accept and view myself as someone who is disabled.
I’m not profoundly disabled. But, I am disabled. My conditions affect my ability to do day-to-day things. And that’s okay.
The “that’s okay” part is really the take home.
Realizing that has actually given me a lot of peace. It has also helped me with some of my internal struggles. I have battled for a long time with this feeling of inability to “be me” to “do my life” and something that a blind man said on TikTok really resonated hard with me. He said that he wished that someone had told him while he was going blind that he could still do everything that he had wanted to do. He just needed to find a different way to do it.
It was my “aha” moment. I can still be me. I can still do my life. I just need to find a new way to do things. And that is going to take time. It’s going to take more time than I want to give it, than the world wants to give it. Or give me. But I can do it.
And what I really need is grace while I figure it out. I need time to try and to fail and to regroup and to try again.
That regroup part is crucial. My darkest moments have been when I tried something. A new trick, a new way of doing something. And it didn’t work and I have no idea what to try next. Those are the moments that I feel most hopeless and I need time to process what I am feeling and find the strength to try again.
What I need is grace.
That’s what we all need. All the longhaulers.
Long-Covid kills people. I don’t think people realize that yet. We know covid kills people. But, Long-Covid kills people too. Mostly by suicide. People are hurting so bad and no one is listening to them. They feel alone, in pain, overwhelmed, and they start to think that they are never going to get better. I see it all the time on my survivor support group. We do our best to uplift one another, to motivate ourselves to get through hard times and then every once in a while, you stop hearing from someone. Next thing you know, you discover that they are gone.
The second most common way that Long-Covid kills people is the heart gives out. That has killed at least two people I knew. People try to “push through” but we really can’t. It’s terrible advice and I am begging you all not to repeat it. We want to push through. We can’t and it can be deadly for those who try anyway.
We don’t need to push through. We need time to try to find a new way. We need open communication on what is and isn’t working. And at least for me, it’s fine to workshop ideas with me. After all, it’s sometimes hard for me to think on my own anyway. And I think that would be true even if I didn’t have neurological issues. I have my own way of thinking and approaching things and sometimes someone with a different viewpoint says something and I think to myself “now, why didn’t I think of that?”
But, what I don’t need is for people to assume that they know how to help me. I hate even writing that sentence. It makes me feel ungrateful.
And I just want to say that I am incredibly grateful for everything that someone does to try to support me. But, I think you can be grateful but still point out things that are problematic and try to establish open dialogue.
I know that everyone who has tried to help me lately has come from a place of love. But, it has led to some problems lately. It’s led to people deciding not to include me in things because they didn’t want to burden me. But, it actually troubled me more to be left out. I mean this in both emotional and practical ways. Some conversations I really needed to be a part of because they affected me. Some events I just wanted to be a part of, or at least would have liked a choice in whether I did or didn’t decide to become a part of it, and it hurt my feelings.
Mostly, I just wish I had been asked or consulted. My situation reminded me of situations that a couple of other TikTok-ers recently talked about.
There was one lady in a wheelchair who recently talked about a situation that happened to her in a grocery store. She had just put her bag back on the back of her chair. A bystander thought she was struggling to grab it. So, they came up and grabbed the bag and opened it for her and said “here you go.” The women on TikTok explained that she knew the person was being nice but wished that the person had asked if she needed help before they grabbed her bag.
Another man was an amputee. He was running for exercise and a person pulled up beside him in a car and told him that he would take him anywhere he wanted to go and “he didn’t need to run anymore.”
I have made the decision to start being more vocal about the things that I realize that I do and don’t need help with, in the hopes of being clearer about when I don’t need help. I’m trying, anyway. My first few attempts have apparently come off as hostile. But, I’m really hoping that being open and communicative helps me and helps others in the long run.
I also know that I have also been guilty of these same things. I made assumptions and tried to help someone by doing something and now that I look back on it, I was probably out of line. But, now that I know better, I’m hoping to do better.
I think this is a behavior that is problematic even in a situation where a person doesn’t have a condition or an illness or a disability. But, I have also come to see how particularly problematic is in that particular realm.
I just hope if nothing else comes out of this post, that someone reading this internalizes this simple message. If someone in your life has a chronic illness or disability, don’t assume that you know what they are going through. Don’t assume that you know what they need. Ask them what they need and then give them grace and patience as they try to figure out the answer to that question.
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