"How are you?" or "Are You Okay?" to that I Respond, "Are you stuck?" 😏

As a person with extensive physical limitations, I am often asked, "How are you?" and/or "Are you okay?".   I need help understanding what type of response to provide to this question. I am okay in many ways and then not also in many ways. That is no different than any other human I know. Here's the catch: people expect only positive responses in my world. When I respond truthfully, I get the look or verbal responses roughly translating to "SHUT THE HELL UP!".

More often than not, I should be asking you, "Are you okay?" or better yet, "Are you stuck?". That is because I am finally living how I want to live when so many are not.  

Some questions for you...

1. Are you living the life you want?

2. Do you have partners/friends that make your life happy and healthy?

3. Do you like to explore and learn? If not, why?

4. Do you like your job?

5. Are you healthy?

If you cannot answer these questions positively, please do not ask me if I am okay; tell me what is happening with you. I'm happy to listen, and one of the things I can still do is help you get unstuck!

I have come to terms with many things that turned out differently than expected. Have you? I have lived, lived with no regrets, and spend/spent time with loved ones I wanted while living, and I generally do not feel sadness except occasionally over a loss.

The following articles provide positive tips for getting unstuck, and I wanted to share their message.

Feeling Stuck? Here's Why And How to Get Unstuck in Life

Get Unstuck When You Feel You Don't Have Time to Do Anything

How To Move Forward When You're Feeling Stuck

You Can Imagine

For my entire life, I have heard the expression, "I can't imagine...".  The thing is, we CAN imagine.  People say that as a response to something they deem as pretty terrible when they are listening and want to convey something like, "WOW, THAT SUCKS SO BAD."  instead of saying, "I can imagine. Do you want to share how bad things are?"  That's what I want to do!!! However, in small doses.  I WANT TO BE HEARD. I have a CHRONIC problem.  It will not go away and is always with me, and it is BAD.  

Unfortunately, my issues are not the most popular conversation topics, and almost everybody thinks they should shut me down and tell me how lucky I am when I start talking.  I get into arguments trying to convince friends and strangers that things are NOT great.  Then the solution ideas start coming.  What if you did _________?  How about trying _________? You really need to _________.  How do so many people know what I need more than me?  I spend 24/7 with myself.  Doesn't that make me an expert on me?  This also makes it hard to talk about "normal" things like you, your family, your job and etc.  Believe me, I would rather hear about you, and when the conversation starts about my issues, there is no conversation.  

Remember the sack of flour we all had in school as our "baby" we had to take care of for a week.  We did this to begin to imagine what it is like to care for a child.  If that exercise gave you even the slightest taste of what it is like to be a parent, then I will venture to say you can imagine what it's like to carry other people's responsibilities.

I have been backing away from society for years because the "mean wells" have been eating away at me. Words DO hurt, and I get assaulted by them almost every day.

My patience is starting to wear thin, so I am sorry in advance if I snap at you.  Please understand my anger is a culmination of years of people "meaning well."  I find joy in things, but do not ask me what I find joy in (many people ask me this).  The list is short, and having me say what I find joy in makes me "hear" everything I cannot find joy in any longer.  Similarly, there is no need to tell me how lucky I am, how great my husband is, and so on.  I am very aware of how much worse my situation would be without all of the things that keep me going.  Continuing to hear comments about how lucky I am (I guess it's lucky to lose your ability to function independently) makes me angry.  I am in a complete partnership with my spouse, and when he gets all the accolades, I feel like a pile of shit.  I will restate, this is an EQUAL partnership.

I am thriving at my job, which is full-time and is one of the things that is keeping me going. I am working on doing more socially, but the last two years and my introverted side have made me enjoy being alone and in one place for long stretches of time more than ever.  It's okay if that is something you would not enjoy, but I do. I have had trouble making friends and have had to say "goodbye" to those making life more difficult.  Almost every human encounter ends up making me feel bad, so for the sake of saving me and you, I need a lot of time to figure out how I will navigate the rest of my life.

I found the article below, and the message is pretty spot-on regarding how I feel and what I am attempting to communicate.

BY REBEKAH TAUSSIG AUGUST 20, 2020

Taussig is the author of Sitting Pretty: The View From My Ordinary Resilient Disabled Body

I've Been Paralyzed Since I Was 3. Here's Why Kindness Toward Disabled People Is More Complicated Than You Think

BRUTAL: Punishably Hard or Uncomfortable

The word "brutal" describes my life and that of my spouse over the last two years.  However, when we have attempted to say how bad things are, it does not resonate with anyone because we do not look the part of two people slogging through the hardest years of their lives.  

We are moving back home next month after a little over two years since we started our home remodel in late 2020 and moved out to our temporary home, GRACIOUSLY provided by my father, on February 6, 2021.  We consider ourselves LUCKY, and we have had a TON of HELP from more than a few people, so we are GRATEFUL, but we do not want those feelings to overshadow the full experience.

• BRUTAL:  I continue to decline physically, and at this point, I have lost about 60-75% of my ability to physically function as a "normal" human. It is hard for everyone, including me, to understand that there is nothing more I can do to help myself over everything I already do, which is OVERWHELMING. 

• BRUTAL:  I am living in my childhood home at this time.  Amazingly, we have a wonderful free place to stay, BUT this house was not designed for someone with my severe level of disability.  For example, I have to do the funkiest maneuvering to get into the bathroom.  I can still get out of my wheelchair by using a doorframe, table, or other affixed or heavy objects to pull myself out of my chair, but my legs will not bend, so I drag myself through the bathroom doorframe to the toilet all day, every day.

• BRUTAL:  By choice, due to how hard getting dressed and out of the house is for me, my spouse, and anyone within earshot, I only go out once a week at most, but typically not for weeks at a time.  I live in three main rooms of the house because those are the only places I can get myself to and get about 50% comfortable.  I wish I had not taken comfort and rest for granted because I no longer experience those two things.

• BRUTAL:  Laying in bed is a huge challenge.  I can only sleep on my sides now and need help to roll over, so whenever I wake up and need to move, I have to wake Steven up to help.  We have been sleeping on an air mattress for two years, so I hope a regular bed with a frame will allow me to move without help.

• BRUTAL:  The other 105 things I will not write about.

I have the ability to cope beyond my understanding, so I am hanging tough mentally.  I found that I have many interests and pursue intellectual growth to fill my time when I must remain in place, and my amazing spouse has made sure he has his outlets as well.

Our marriage and relationship with my father have grown positively, and so many people have been beyond kind and generous to us, so if there is a silver lining, it's YOU, the people that helped us and made sure we did not drop off the face of the earth. 

Life should be easier in our home that was already accessible to me before the remodel, and that is our hope.

Making Life's Hardships Look Like a Cinch