Sometimes the best gift is staying away

When you want to celebrate achievements of another and you love parties and people, it is gutting to learn that your presence at such events is a source of stress for your loved one instead of a celebration of a shared life experience. 

When the potential for happiness is overshadowed by fear of what I may say and what I may do, it makes me feel inhuman and unloved. 

When I haven’t even said or done anything wrong but need to be tucked away to preserve future relationships with more important people, I feel like I must  hide in the asylum. I was invited by another party goer and gave my loved one the gift of “no”.  

I will hide in the opera house for you if it makes your happiness complete and your transition smoother.  Just realize please that I don’t belong there. I don’t want to be hidden in the opera house. I want to be free and proud and me, even though I am sick. I want you to be proud of me for trying instead of being terrified that I will be symptomatic.

Today has made me question all of my relationships because my closest one surprised me the most. 

But I have given the gift of no because if I went and something did happen it would not be well received. I have no watch or present for you. I have love and years of listening to your dreams and frustrations and encouraging you to be your best possible self.  

I gave you the gift of no and Fear it is the beginning of a lifetime of my further excision from potentially embarrassing moments. 

But I do not have a behavioral problem, I have a neurological disease. Control only goes so far, as evidenced by this blog. 

I would hope that as I worsen, the focus will be on ways that I say yes without feeling like Boo Radley has come a calling. Ways that my family and community can accept and even buy into my disease. That I can feel as welcomed at a going away party for my husband at work as any other wife would. That I will be treated with the dignity of a cancer patient or a paraplegic. 

But today the gift of No was the best I could do. And I did it so you would be free of the stress of me. 

If I had been there I would have looked at you with pride for all you’ve accomplished and with love for the man you are. 

That’s how I’ll look at you when you come home today and every day, forever.  

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A hidden pain in the neck

The emotional difficulties I have been having for the past few weeks are literally linked to cervical disk pain my brain can’t detect at first. 

I get edgy, then upset, then so upset I have to stop what I am doing so I can keep it together. 

At this point, and this is the part I have been forgetting, I start to take a personal inventory. I think of what on earth could be causing me to be so upset. Then I remember that I am going to PT because of disk issues in my neck.  Up where it meets my head. 

As soon as I remember, the physical pain surfaces. Vague at first. Then it joins with the emotional upset and changes the emotional pain to severe physical pain. 

The physical pain must be happening the whole time and I am not able for some reason to feel it physically. I mistake it as an emotional pain. And because of my memory issues I have been forgetting it happens.  After I wrote the last blog, I realized again, and went to PT an hour before my appointment time.  When they saw my face they could easily recognize that I was in severe pain and immediately got me back there to help. 

I am starting to see a pattern here which my Physical therapist confirms.  Mere months ago, my brain forgot how to give my body instructions to walk. A conversion disorder with no underlying hardware problem. A wiring problem. So I relearned how to walk and have been better than fine ever since except that I injured my neck during my short time in the wheelchair. 

There’s also the panic attacks I used to have thirty minutes away from home after coming back from my parents’ house. It would always start on the same stretch of highway 70 coming back from Kinston. I used to put my husband on speakerphone when I got near that stretch so he could talk to me until I got home.  We spent countless hours in therapy and at home trying to figure out why it was happening. Then my husband realized that the first thing I did when I got home was run to the bathroom and urinate. The anxiety attacks were because of a full bladder. I simply had to pee. A pit stop in the middle of my return trips put an end to the full bladder and to the anxiety attacks that I thought I would have forever. 
I guess what I am learning is that the emotional and the physical are intertwined and that I can’t always recognize my body’s signals anymore. So my emotions go on high alert to let me know that something is wrong. I need to learn to read my emotions as signals of physical conditions.  Doing so would save me a lot of anguish but it is hard to remember. It is like learning a new language. 

I don’t know if HD has anything to do with any of this. I would love to hear from anyone who’s had anything similar going on. 

Inner fracas 

Stuff is always going on in my head and none of it is pleasant. 

For the past few weeks it is been like this: 

an inner scream, an inner argument, an inner struggle to stop the screaming and arguing. 

Every now and then my brain will seize on something external that I can try to attribute the brain screaming to but I am channeling feelings at the wrong thing. 

In actuality, there is no place where they belong and no place for them to go. So around and around I go– barely keeping it together.  Saved only by routine. 

When people scratch my surface, they are far away. At first I can’t understand what their words mean. What their intentions are. If I did something wrong. My brain revvs up with even more interference and I might smile at them and feel so distant from them and 

wonder if they 

pity me 

yet. 

By the end of each day I am more tired than the day before. 

At the end of each day, when I do a mental inventory of my faculties, they seem smashed and bruised. 

At the end of the day I am so worn out with struggling with myself that I just want the day to end like flicking off a light.  

But my body keeps me awake, flicking and twitching its own inventory of itself. I have to put a thumb under each side of my butt to keep my arms still at night. My right thumb is sore and sprained. 

It is the time of year that I like to sit on my porch and have that feeling you feel when porch sitting but I barely feel the feeling licking at me and am more irritated by a car that simply drives by. 

I wonder if this is the way it is going to be. If it is just going to get worse.  

And that sends my brain further into turmoil.  

The last birthday party 

I can’t accept another party invitation because I can’t ensure that if plans change and I have to go alone I won’t fall apart. 

 I can’t drive Mark to another party because I told him I could only manage him and he brought two friends despite my expectations and this made me fall apart. 

The drugstore didn’t have my meds on time and this made my insides shriek. 

One of his friends tells me I am a fine looking woman while I am struggling to keep the car on the road and part of me wishes he’d slip out of the window and away from my mess. 

I can’t go to that party house again because They saw me suffering and that’s not good. I’m supposed to hide it but there was more than I could take. All the people and the loud boys I couldn’t be responsible for and the young girl who loved unicorns who just wanted a normal day so I hid inside and ran outside long enough to take pictures of she and I and of her chicken. 

The grownups at the party asked how I was and I told them it was hard. That I do better at home. That I loved their home and their family but it was obvious to them that I was dying inside just being there in the middle of it all. So many things and people and it was hot and I was scared one of the boys would act out or get hurt. 

In the end Randy came and switched places with me. I took my meds came home relaxed felt better but now I am the one who cannot accommodate change. The one who can’t provide respite. The one whose near breakdown was somehow mispercieved as lack of love. 

I only tried to do something I shouldn’t have. Something I have done for the last time.  But my failure had fallout and now everyone is going on with their post-party lives but my misery is complete. 

Totality

A couple of weeks ago I saw the total eclipse of the sun.

Conditions were perfect. I was at my best friend Nina’s house in the NC mountains.

My husband and my youngest son, Mark, were there. During the moments before and after the period of totality, my two sons Noah and Ezra contacted me, so I felt like I was sharing the experience with people I was connected to by blood and by love.

The time before and after the totality evoked a different feeling than the totality did.  Before and after felt like I was participating in a cool science experiment.

But the moment the moon completely blocked out the sun, things changed. Crickets chirped. A strange semi-darkness prevailed. Bats came out. And I took off the eclipse glasses and looked up at a black orb proudly displaying its blackness in contrast with the white corona that surrounded it. It was like a secret planet had revealed itself.

We all felt primal and slightly hallucinogenic. There was nothing to do but transfix my gaze at the totality. To drink in the sight of it.

There was no Huntington’s disease to consider for two minutes and thirty-four seconds. I was part of the human tribe. Energized. Feeling both very small and very large.

 

To drive or not to drive?

I guess if I’m asking myself this question, the answer ought to be “no.”

But if I stop driving, my independence is gone.

I can’t just ride a bike instead, because the same visual attention deficits that could negatively impact my ability to drive a car also come into play with cycling.

Long ago, I consolidated trips. Not long ago, I learned that surface streets were safer.

There are online simulations I could take.

There are people I could pay to tell me how well I drive.

My doctors’ offices are hours away. Two sons attend college in the vicinity. I am going to see them all next week. Maybe then, I’ll have a better idea.

I’ll pay close attention to how I’m driving without distracting myself in the process.

Beautiful life

I have been strapped into the seat of a carnival ride, whisking me through my beautiful life. 

I have put my hands in the air and been carried fearlessly throughout recent events. 

So much beauty to appreciate. 

So much love to reciprocate, including being there for people I love when they’ve needed me. 

I am grateful for the strength. For the newfound ability to cry “Yes!” And for the will to be my own agent in hard times and use the resources that are there for me. 

My will to make the right choices is my superpower. 

My love for my family and friends is infinite. 

I am staying on this ride. 

Hard reset

My husband noticed it first. When I learned to walk again, my stride was longer than it had ever been before. Before I forgot how to walk, I trailed behind him on walks. Now he can barely keep up with me. 

But improvement has pervaded many areas of my life. I am exuberant, capable, and joyfully doing things I previously was unable to do, like grocery shop and cook dinners. Eager for errands and outings, I now say yes instead of no. I am present in the moment and I sparkle. 

My best friend Nina said it best in this text she sent me this morning:

“Good morning! Idk know what has happened to you but I want you to know it has made me know that miracles can happen. You are the Sarah from before and I can see the happiness in your eyes. I also see you are appreciating what has been given back to you and going full force with it. Take those dancing lessons or whatever else might interest you. Thanks for the visit from your extraordinarily family and renewing my trust in miracles.  Your bff🦄❤️”

I don’t know what has happened to me either but it seems likely as anything else that my brain had sort of a hard restart and my abilities got reset to a previous, more gloriously normal, level of functionality. 

And I am grateful for all of it. 

It was worth the time in the wheelchair, the ensuing medical bills, if this was what came of it.

You just never know why things happen. 

Sometimes, like now, I am getting a glimpse of a divine reordering. I am standing under the flow of life and transmuting energy into joyful, grateful existence. 

I am embodying the energy that was returned to me and going with it. 

Like riding a bike

I have never had to re teach myself riding a bike, but I was re taught how to walk by a very skilled and insightful physical therapist.

And now that I know how to walk again, it’s as if I never didn’t walk.

Except the memory of the past few weeks hangs fresh like some freaky nightmare right now.

I expect it will fade.

But the joy I felt when I took, at age 51, those new first steps, the happiness I feel because I don’t ever want to sit down or lie down or turn down any invitation to go for a walk again.

That’s something I hope I’ll remember. Here’s a video just in case.