"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

Odds and Ends

This is my fourth blog post for 2022 and possibly the last one for a while.

There is one main reason for this:

I write to help others and have fun, but I would like to figure out other ways to do this. I am not ready to delve into pure content creation, but maybe something close to that.

                                                                                                                        

This quote is everything to me. I have entered the "True enlightenment" phase of my life!

"Enlightenment is when you finally see you're screwed. True enlightenment

is when you see you're screwed, and you're okay with that."

-Gary John Bishop

                                                                                                                        

I am screwed physically. I mean, SCREWED, but I am at peace with it. I am continuing a long physical decline spanning over a decade. You cannot see it in pictures, but there is very little I do independently (and I lose more and more every year). Facing every day is a massive challenge for my spouse/caretaker and me.

If you are interested in learning more about getting me ready for bed, in bed, out of bed in the morning, working out (because I am still doing that), prepared for work, working, bathroom breaks, showers, and more, I am happy to share it with you personally, but if I write about it, it is too "complainy" and ungrateful sounding along with sad and depressing, and that is not something I want to do.

My energy level is one of the oddest things about me and this situation. I have boundless amounts of energy. I work like crazy, do not rest, and have to entertain myself after work by folding and hanging laundry while I sit on the floor, studying and puzzles. Yeah, that is how topsy-turvy things have gotten.

                                                                                                                        

Another item I am mostly at peace about is our home remodel, which roughly began in February of 2021 and is NOT done! I wanted to have a big splashy social media release sharing all of the juicy tidbits, but he, who shall not be named, our contractor, formally our across-the-street neighbor and now is out of state, is not worth my time.

I will summarize the year-long experience with the horrific contractor and the after-effects as possibly worse than my physical disability. This guy ABUSED my husband and me. He used gaslighting and bullying tactics to keep us out of his way.

We asked him not to show anyone what we were doing, but he let everyone in our small building see his work. On the surface, it looked good, but like any other glossy presentation, it lacked substance.

He could not adhere to our budget and broke the contract we signed with him.

In February 2022, this shyster left the morning following a heated discussion with my husband. The contractor asked for more money one last time (after we had paid him in full and paid for many things out of pocket on top of our budget). When he did not get more money, he left the state with many items in our condo, including the bathtub bought with our money and some personal things he "did not realize were not his." Those items are not worth much, and the rest of what he took becomes a legal "he said/she said," which we very quickly learned was something we would not pursue. Trust me, we tried and did what we could.

The remodel will wrap up in the foreseeable future because we took matters into our own hands with my spouse acting as a project manager, and it will be 1.5 million times better than what the lout did. The loser contractor left us with an unliveable home and a punch list of at least 70 items, including getting the glass ordered and installed for our showers (not to mention the plumbing for the showers was never done).

The contractor chose our paint color, which looked horrible, along with really crappy baseboard work, so we had all that work REDONE!

We are grateful for all the help we have received and continue to receive to make it through this dark time. However, I am too disabled for where we live, and the physical and mental toll this is taking on my spouse, and me is more than anyone should bear. Still, I bet many others deal with similar emotional situations in their life, so we know we are not unique.

As I have said before and will say again, I am LUCKY, so I look forward to the day I can look back on the last year plus and laugh!

Later gators!

NO EXCUSES

This "short and sweet" post is inspired by the quote below from the page-a-day calendar "UNFU*CK YOURSELF" by Gary John Bishop.

"Who or what have you blamed for your life being the way it has been?  Maybe your life was turbulent and upsetting when you were growing up, or perhaps it was boring and uneventful.  The thing is, there are plenty of people who grew up in similar situations who haven't turned out anything like you."

This quote encapsulates one of my life mottos, "Do NOT make excuses!"

To say, "I cannot stand excuses." is a significant understatement.  As the quotes below state, you will not accomplish anything if you make excuses.

You do not need to be the best; you just need to do "it"!  You can talk and make excuses until you are "blue in the face," but action is the only way to get results.

We live in a world of people struggling to survive.  The antidote to struggling is solutions (with an emphasis on the plural of this word).  This is because human beings are meant to solve problems.  This is why I say...

"Without problems, there would be no life, and without solutions, there is no living."

If you find yourself making excuses not to try something new, finish something you started, and so on, it may be time to ask yourself if what you want to try, finish, etc. was suitable for you and if you believe it is why are you making excuses not to continue?

Similarly, it is okay to discontinue something if it is not right for you, but you have to TRY!

My Personal Coping Mechanisms for Life to Keep My Head in a Postive Space

My smile and genuine zest for life are representative of how I feel almost all of the time, but I was not always this way.  After I transitioned to using a wheelchair more often than not (about two years ago), I was sad and frustrated just about every day.  It was hard to get used to the changes I was facing as a result of my physical decline in my lower legs (and then some).  However, I knew I had to tackle the feelings of sadness and frustration to get where I wanted to be mentally, and I DID!!!

I am writing this entry to share what has helped me cope with life's difficulties on my own.  

To be completely transparent, I am not depressed or suicidal, but I expressed for years through tears I did not want to live this way.  It's freaking HARD to have a disability.  I did not understand how hard until I was faced with one.  The irony of being at the level of disability I am at is I have a lot of company instead of being alone as I had been for so many years battling multiple sclerosis that looked different on me than almost everyone I know with the same diagnosis.  For that reason, I do NOT feel sorry for myself at all nor do I feel alone.

Since my transition into a wheelchair happened to coincide with the beginning of the COVID-19 pandemic, I took advantage of time where no one was doing much in the way of going out and decided to work on myself.

For this post, I wanted to recap my history with chronic illness and physical damage I am left with that is continuing to get worse.

Part 1

History Lesson 

Today, I am almost completely paralyzed from the knees down in both legs.  I can still feel, but that's about it.  I no longer "walk" (dragging my feet behind me while standing upright holding on to a walker for dear life) more than five to 10 steps with aids.  I can still stand on my legs independently, but I am much more comfortable holding onto an inanimate object for support/balance.  My lower legs are essentially heavy dead weight attached to the rest of my leg.

This did not happen overnight.  The unraveling of my legs' ability to operate normally (along with a laundry list of other issues) took place over a decade, which part of occurred even before I knew I had multiple sclerosis, the cause of my physical decline.  

I know now I was diagnosed with multiple sclerosis when the disease was almost done wreaking havoc on my body.  After multiple sclerosis became inactive in 2015 (diagnosed in 2012), I was left with a substantial amount of nerve damage in my brain and spine. No one knew what that would mean as far as physical decline, so I did EVERYTHING you could possibly conjure up that could have helped me.  

I do believe some things did/do help like exercising, healthy eating (not 100% of the time 😋), and constantly working on my mental well-being kept me going as long as I have without completely dropping out of life.

Hindsight taught me a lot and the good news is, I am NOT the reason my lower legs do not work, multiple sclerosis is.  That also means the reason I am the way I am physically is not because I eat gluten, do not take medication, did not do the right exercise and so on.  There is no cure for nerve damage/spinal cord injuries.  There are tons of scholarly articles and trials, but year-after-year, I keep hearing about the same old things and new promising discoveries with nothing coming to fruition.

Incidentally, I no longer identify as having multiple sclerosis.  I only identify as a person living with extensive nerve damage (caused by multiple sclerosis that has been inactive since 2015). 

If you are like me, I had no idea being paralyzed meant so many different things and how no two people who use a wheelchair are the same.  On that note, here are three versions of me with almost complete paralysis in both lower legs:

Wheeling

Working

Standing While Exercising

Part 2

These are the beginning of the phrases that have been said to me, have been plaguing me for years, and why they are not supportive. I am sharing them in hopes it helps even one person make an experience better for someone going through something difficult.

1. Maybe you have/don't have __________.

Personal to me, maybe just maybe, but the fact is I have hard evidence and more than three neurologists say I have multiple sclerosis and extensive nerve damage, so you can see how odd and quite honestly offensive it is when people suggest I have something different wrong with me since I am not like them/other people they know with multiple sclerosis.

2.  It could be worse.

Friends, it could be worse.  Pretty much anything you have going on could be worse.  If a teenager breaks up with their significant other, do you think they are comforted by the phrase, "It could be worse."?  No, there is no comfort in those words, so why is it okay to let me know as person who uses a wheelchair is that it could be worse? (the wheelchair is the good part anyway)  Perhaps, stating you are sorry and here to listen would be more comforting.

3.  Well, but, at least __________.

• Well, but, at least you have a spouse who cares about you.
• Well, but, at least you have the ability to pay for things.
• Well, but, at least you can still get to the toilet.

These phrases are hurtful and guess what, I am still changing, so things I do today, I may not be able to do tomorrow.  Once a fellow wheelchair user said, "At least you can still walk" and less than a year after that I could no longer walk. The words stuck even after the ability left. 

4. I bet your job and life stresses caused your physical damage.

Nothing, I mean nothing makes a person with disabilities/chronic illness feel worse than hearing other people essentially blame them for how they are.

5.  You are NOT the ONLY ONE with problems.

That's true.  I am not, but telling me that does nothing.  It's incredibly invalidating.

6.  Have you tried __________?

Your eyes would bleed reading a list of everything I have tried to help myself. It is kind to think of me, but unless you have a proven solution for healing nerve damage, you are likely telling me about something I already tried.

7.  I think you should consider therapy.

Gaslighting has become something that happens to me regularly (even if its unintentional).  I am always in favor of therapy if you want/need it.  However, because I have feelings and express them in a healthy way to me means I am doing well.  I am not depressed or angry and cope very well with a very serious life changing disability.  I am not sure why this phrase is said to me.  I suppose it is because I should not feel bad/express how I feel about what has happened to me and that feels like gaslighting. Note:  It also does not help that I am an introvert, like being alone, and not going places.  This does NOT bother me, but it seems to bother a lot of other people who think the way I CHOOSE to live is unhealthy.

8.  Can/Does she __________?

Yes, I am still invisible, stupid, unable to talk and you name it.  I have had this wonderfully kind phrase uttered to people with me almost every single time I go anywhere.  I may speak to a restaurant host/driver/store clerk at the start, they typically respond to me one time and then address all other comments and questions to NOT ME and they ask the person or people with me if I like something/can do something.  It's so weird especially when I have already spoken and shown that I am not invisible.