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. 

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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.

It’s called apraxia

My brain tells my legs to move but they don’t act on the message. That’s what the doctors said. The jury is still out over whether it is due to HD or my brain’s response to some upset. The only way I’ll know is if I get better.

Usually people with HD who have apraxia have it in their arms instead of their legs. In fact, in my limited research thus far, I haven’t found any documentation on apraxia and walking and HD.

I am really grateful to the readers of this blog who encouraged me to seek medical attention. That very night, my husband and I went to Duke Hospital and have just returned today.

With a wheelchair.

But also with a long running set of appointments with a physical therapist who is going to teach me how to walk again.

Apparently, I will be more successful if this is not HD-related.

Therefore, I am praying that I can re-train my brain and walk again soon.

Thanks for your prayers and support.

When it’s more than HD

It started eight days ago. I woke up Monday morning, got out of bed, and couldn’t walk well at all. 

 Before that, with HD, I had only had balance issues but was walking fine. But last Monday I didn’t stagger or stumble or anything I’d ever envisioned I would do or had seen my relatives do. 

I shuffled. A Parkinson- like shuffle. Hard to put one foot in front of the other. Small steps. Not covering much ground. 

Two neurologists have told me that it can’t be HD. It came on too suddenly and has the wrong movement MO. I should investigate other areas. 

And I knew nothing about other areas. 

Over the past week, I have learned about Drug induced parkinson symptoms.  I have learned about Lewy bodies, just enough to scare me. 

Every day since it started, it has gotten worse. Today my doctor ordered me a wheelchair. By tonight my husband had to line one up to borrow so he could push me around if we had to go out before insurance approved my order. 

And by the time he had made that arrangement, my walking had deteriorated to the point that it was just alternating sets of toes clawing. Nothing else happens. He called to see if he could borrow, instead, a chair I could push myself around the house in. 

I had to use a makeshift bedpan tonight. 

My husband is mentally rearranging furniture to make the house wheelchair accessible. We are both silently hoping we can get a chair that is narrow enough to roll through the old bathroom door. 

We are hoping for the best but planning for the worst. I am being taken off meds that could cause effects like these and my MRI will be of my brain instead of my spine. 

I don’t know if, tomorrow, I will be able to walk or if I have already walked my last step. 

The one HD consolation prize, the gradual progression, has been ripped from me. 

And whatever this is, I don’t know if it is going to stop now that it has taken my feet and my legs. Is it going to work its way up my body and immobilize it all?

Is it going to have its own accompanying horror show of symptoms for me to dread, or will it take me out so fast I won’t have time to go there?

My husband and I are on our own in uncharted territory. I have something that is undiagnosed, swiftly progressing and, so far, has no known treatment. 

As well as HD. 

The spring fall

May is HD awareness month and my awareness of my own HD increased greatly when I fell on my a** Friday night.

I was allowing myself to be dragged to a play and just one more time I had wanted to wear shoes with a little lift. But I tried to walk backwards in them and that set off a slow motion, reverse fall to the ground.

I went to the play, but was too sore by intermission to stay.  It pretty much ruined everyone’s weekend because I was laid up with a bruised hip and not happy.

When I fell Friday night, my self-perception landed outside of me, like a camera, giving me snapshots of where I’m at now, in total:

Besides poor balance, I can’t remember life events. There are chunks of my life that just aren’t there and I don’t know it until someone mentions it.

I have trouble doing simple things like making phone calls.

I have unrealistic ideas and I expect things around me to be the way they always have been, but they can’t be, because I am getting so much worse. I can’t be treated the same way because I don’t act the same way.

The most insignificant things, like making simple choices, are huge, emotional deals that are liable to piss me off or leave me with hot tears of frustration.

Even thinking of reaching out to friends feels like running underwater, so I stop before I reach. I’m afraid I won’t reach them and if I do reach them, what is there left of me to connect with? I miss you, James and everyone else, and I am sorry.

Ever since Friday night, I’ve noticed that the memories I do have are from someone who existed two personalities ago. That the changes in who I am have been stark and permanent.

Today I have been overwhelmed by the notion that my family needs respite. That I have pushed everyone to the edge.

But they tell me no, today is a new day and things are OK and I am trying hard to let that sink in.

Because, with HD, the promise of a new day brings with it the promise that I’m slipping, I’m falling.

And worst of all, I’m becoming a stranger.