DIY HD getting-through-the day kit

Let me tell you about my latest coping mechanism. A steppingstone in my quest to minimize the frustration of the progression of HD.

I got the idea from the people in the ATT store. They have these cool Apple aprons that they use during their shift. They can transact entire deals using the content of those aprons. Except they would not sell me one. So I had to go online.

For the past weeks, during my daily life at home, I have have had notebooks in every room with the same dates and notes written on all of them but haven’t been able to remember that I had written anything.

I have been in a state of not knowing when things are happening no matter how many alarms I set for myself and emails.

Also,wherever I go, I have wished that I had certain things all together with me, like my phone, reading glasses, something to jot things down on, etc. It is an infuriating cycle that repeats daily.

I was spinning on the heavy duty cycle of confusion one night when I happened to come across the item pictured above on a Facebook store. I think it was New chic but am not certain. It definitely came from China and took its time. It was only 15 dollars US so I bought it.

It came yesterday and I have been experimenting with it as a tool to get me through the typical day. The bag sits comfortably over my front and has room for all the items I listed above that I need to function. There is also room for an old fashioned calendar. There is enough room to keep a portable battery in it so I can charge my phone wherever I am. There is enough room for a kindle fire. If I were into using earplugs, there’s an orafice for the wire to go through from the bag to my ear. It has lots of pockets. And when I go to the bathroom I can just sling it over my shoulder and it is out of the way.

I am going to use it this week. Just wear it around from the minute I wake up until bedtime and see what other things might come in handy. Like maybe an emergency bottle of antipsychotics or some moisturizing eye drops.

It has room on either side for small bottles of water but I drink from enormous containers and I think negotiating the smaller bottles and straps could challenge my fine motor skills and I want to eliminate challenges.

So far it feels like a cross between carrying a baby in a sling and wearing a fanny pack that I can see and reach.

I already know I want to have an HD info card in there. I have emergency numbers.

I will let you know how it goes and if it is useful. Please suggest anything that you might think could come in handy.

So far so good.

Experimenting with expectations 

A lot of things haven’t been playing out the way I had expected them to and I have displayed behavior that was disproportionately severe relative to the various situations. 
I complained about this to my kicka$$ therapist, and she asked me a question that I am putting to use going forward. 

She asked: “Who put you in charge of what is supposed to happen?”

She got me with that one. 

 I have been putting myself in charge of the “way things are supposed to be” by having rigid, inflexible expectations. As a result, I have been mired down by disappointment, impatience, and sometimes anger. 

Therefore, I have been working to separate myself from assumptions and expectations about outcomes. 

I just performed an experiment on the airplane I am flying in as I write this. The flight has very few passengers, so after we boarded, the flight attendant welcomed people to move to unoccupied seats to stretch out. I urged my sleepy eleven year old, Mark, to move. But when he tried to, the same flight attendant told him to return to his seat. He was a little embarrassed which was enough to set off my pressure cooker and I went into a silent fury. 

I waited for my chance to get the flight attendant’s attention and I had planned to spew angry words at her. She was lucky she was not around for a while and so was I. 

Because, while I was stewing, I happened to remember what my kicka$$ therapist said. I was making myself in charge of the outcome of the seating incident. I was going to say fiasco but it was not even that. I backed up enough to make myself wait to see how things would turn out if I did not verbally assault the flight attendant. 

The flight itself turned out to be turbulent. When the flight attendant finally did walk by, we hit a bump of air and she had to grab the overhead compartment. Mark asked if she was ok. 

“What did he say?” She asked me with a tired, absent look. 

“He wanted to make sure you are OK.”

I was barely able to get the words out before her whole body language changed. Her face bloomed with a smile and she zeroed in on Mark. 

“What is your name honey? Do you want some cookies or pretzels? You can go back there now and sit. I had just told some grownups they could go before and there’s still room for you.”

This is what happens when I remember that I am not in charge of the outcome and I just accept the way things play out.

I plan to look for other field experiments. 

The slow fade

It doesn’t feel slow to me.

It feels like I’m being pulled in by the undertow over and over.

Miles out.

Into a dry ocean.

My thoughts are duller and they no longer fall over each other. There is starting to be space between them.

The level of oblivion I have towards daily life is something I have to try to sneak outside myself to measure. I have stopped cooking. I seldom use the car. I have stopped engaging with others unless I am directed to or am scheduled to. I know that there’s a lot of home improvement that I want to happen, but either it can’t happen soon enough or I don’t have faith it will happen at all.

The emotions I feel the most are impatience with myself for not being able to do anything right and regret when I hurt people.

The collection of memories and facts I’ve forgotten has outgrown its habitat. It needs an island of its own.

I sound like I’m drunk and people on the phone who don’t know me are put off by it.

And my brain is too thick with obstacles, too sick with HD, to be written about with any great insight by its owner.

What other people see is a slow fade.

But I can’t describe how fast I am becoming an empty vessel.

A remnant of myself, clinging to stay, bobs up every now and then.

Like a cork in a turbulent, empty ocean.


Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.

50 Happy Things 2016: Bloggers Unite to Flood the Internet with Gratitude

Dawn Quyle Landau, blogger of TALES FROM THE MOTHERLAND explains how it works:

“The idea is that you set a timer for 15 minutes and then spontaneously list 50 things that you’re either grateful for, or that make you happy… generally the two go hand in hand! All bloggers are welcome, and the link-up is a fun way to share good feelings–– Something we could all use right about now!”

You can get complete instructions from Dawn’s blog entry.

My list (not in order of importance) is here:

  1. I have LOST SEVENTY POUNDS so far!
  2. Randy is the greatest.
  3. I have great doctors and therapists.
  4. I got to spend time with Nina in the mountains and Florida.
  5. I got to go to the WeHaveAFace walk and see and meet friends who deal with Huntington’s Disease.
  6. I am still driving.
  7. My animals make me happy.
  8. I can still work at my part time job.
  9. I can still walk pretty normally.
  10. My HD is the late developing kind.
  11. I still keep this blog.
  12. MaryAlice came to the HD Paddle from NJ.
  13. My oldest son started college.
  14. My youngest son discovered his talent for basketball.
  15. My middle son is applying for colleges.
  16. I got to see my niece and nephews and their grandmother.
  17. I am friends with my brother for the first time.
  18. I got to see my mother two weeks before she died.
  19. My mother spent only a couple of months in a nursing home.
  20. I am remembering good things about my mother from childhood.
  21. The Gilmore Girls.
  22. Sushi.
  23. Don and Susan at Herbalife for their support and friendship.
  24. The happiness of Vana on her great adventure.
  25. Getting to know my wonderful neighbors better.
  26. The desire to plan things, like trips.
  27. My house.
  28. The help my neighbors have given us with the landscaping.
  29. That I had Bell’s Palsy instead of a stroke.
  30. That I now have lots of baseline tests done as a result of 29.
  31. Meeting Chelsea and Dave.
  32. Every interaction with DK and Jocko.
  33. Coffee or tea in the morning with Randy.
  34. (Insert activity here) with Randy.
  35. Laughing.
  36. Music.
  37. Making my house better.
  38. The City Laundry coffee shop and club.
  39. Almond milk.
  40. Water.
  41. The king size fluffy blanket I bought the day after the election.
  42. The reclining couches.
  43. Good TV shows and watching them with Randy.
  44. I can sometimes make dinner.
  45. I made most of Christmas dinner.
  46. Randy finished Christmas decorating after my mother died.
  47. Randy helped me go through 20 years of clothes, try on and throw away things.
  48. Randy organized the bedroom and I love it.
  49. I have a bedrail so I won’t fall out of bed in my sleep again.
  50. As soon as I purchased incontinence supplies, I did not need them.

HD, grief, and The Gilmore Girls

(No spoilers) I started watching The Gilmore Girls on Netflix about a week before my mother died. I didn’t know it then, but I was setting myself up for some good grief therapy. At the center of the show is a relationship between a mother and daughter. It’s a superb relationship. The kind I dreamed of having. Since my mother died, I have watched about half of the original series.

In the first days after her memorial, it was all I could do.

Now I am starting to work my part-time job again and participate in life, and my consumption of the show is something I look forward to fitting in each day.

It seems like watching the perfect mother-daughter relationship would sting, because that is not what I had. Instead, it shows me how abnormal my situation was and I realize how much of it was because of my mother’s illness. And the happiness that I generate for the characters lingers and I feel happier all around.

The big lesson that is forming concerns what I want to do going forward. I want the people I love to know that I love them, so I am making it a point to tell them more often. It’s not eloquent like Lorelei Gilmore, because I don’t have my own writers. But it is not perfunctory either, because I mean it.

I also want to participate in the world around me. That means fighting inertia when it good for me and going out with my family. It means showing Randy and Mark New York City. It means travelling as much as I can and visiting people I love. It means enjoying every moment with Randy and making plans together.

Every now and then, it will hit me that my mother is dead. I will forget and remember again. I will remember the younger, healthier version of her. “My mama is dead,” I will say to Randy and sometimes some tears will come out.

Then I will remember how her brother who had HD writhed for years in a nursing home bed, unless he was strapped down or given paralytic drugs.

Because my mother was the stubbornest person I’ve ever known, I had every idea that she would share the same fate as her brother. But I am glad she did not spend her last years that way. She was only in a nursing home for a few months and was alert most of the time. But one day, she refused to engage in physical therapy and within weeks she succumbed to what we thought was a minor respiratory infection. I like to think she made some decision to let go…

Because of the way my mother died, suddenly the process of dying doesn’t seem so daunting and scary.

And because of The Gilmore Girls, the process of living suddenly holds the promise for fun, adventure and love.

So I am putting away the fears of dying and getting on with the living.

Losing my mom to HD

Sunday night, my mother died and her earthly existence ended. But I had lost her to HD years and years ago. She and everyone close to her were victims of her primary symptom: the ever-renewing anger loop. Only during the past couple of years did she take any medicine for HD. She refused until, somehow, doctors convinced her that she would feel better if she took medicine to slow her chorea and when she started taking that medicine, a lot of the anger went away.

Her anger, that is. I have spent years in therapy dealing with the hell that she put me through before I knew she had HD and started realizing that the problem wasn’t me. I have spent those same years trying to forgive her for hurting my family and other people I love because her behavior was caused by a disease.

Our disease.

Now, just my disease.

I have Facebook friends who have lost their moms to HD and they love and miss those moms. I wish that my mom was like theirs. I feel that way about my dad, who died of kidney disease, and was never abusive. I grieved when he died and I have an empty spot that he used to fill that I carry around now.

But with my mom, all I feel is relief. Disbelief that her dynasty of terror has ended. Part of me never expected it to happen. There is no longer a microcosm swirling around her demands or reacting to her use of the most hateful words she could spit out.

For her memorial service, we are putting together a presentation of the good in her, before the disease changed her. We have to go far back. I hope that being reminded that she was a healthy, kind person once, a person who did nice things, will help me in the forgiveness department.

Even more, I want to be happy for her. Happy that she is free from the disease. Happy that she is no longer out of control. Happy that she is at peace.

But someone asked me how I was feeling yesterday and before I could think of what I was supposed to say, I replied, “Fuller.”

And for now it’s true.

HD and the art of complaining

For several years after I tested positive for HD, I complained to anyone who would listen. “I am not going to be able to think. I am not going to be able to control my movements or speech.”

Essentially, the feedback I got was that it wasn’t happening all that much then, so I might as well not think about it and focus on enjoying every day.

And I have tried that, although it has mostly felt like I was playing a board game on the railroad tracks.

I have captured happy moments like fireflies in a jar and stared at them until they died.

Now the stuff I was worried about happening is starting to happen, and I have used up my complaining allotment. Now what I get, when I share what is going on with me, is that it is not HD and that it happens to everybody. Every time someone says that I want to vomit.

My situation is different now. I can feel the tracks rumbling beneath me and am being told to sit tight.

The thing that perplexes me the most is that, with HD, any sort of denial is perceived as coping. Pretending it is not happening means that you are dealing with it bravely.

I don’t know of many people with cancer who have thrived by denying it, who have been comforted by loved ones and professionals telling them it is not real or that it happens to a lot of other people and, therefore, is not anything to worry about.

My HD progression has increased my defiance with regards to anything I cannot comprehend. I am sick of feeling alone and invalidated.

And in the midst of this cognitive dissonance, I was asked to write something uplifting about having HD. That really pissed me off, to be honest, because I am in the middle of perceiving that my complaints are not being heard. But it was for a good cause and I really like the people who asked me. So this is what I made up:

“Routines are important and, living with HD, I hold my routines as treasures. Eating a healthy diet, walking with my husband, and even sitting covered with my favorite blanket are all simple things but, put together, they form a foundation for a life of substance. I am grateful to have some good routines in place and, when the time is right, I can plan and savor new, positive experiences. And if faced with stress, I have my routines to fall back on, to uplift me. Having healthy routines is like having a huge feather bed that I can enjoy landing on and that is always there to catch me!”

But what I really meant was this:

“I am incapable of achieving anything anymore. All I can maintain are simplistic routines, and even that is hard. I can’t remember processes, figure out procedures or follow written instructions. There are several things that I did last year about this time, like put up the Christmas tree and self-publish the book, that I can’t seem to do now. I stumble when I walk and sometimes my legs just don’t move when I tell them to. The train is coming down the track and all the fireflies are desiccated in the bottom of the jar. Someone please understand that this shit is happening and I do not know how to cope with it. All I can do is sit, covered in my blanket (which is an amazingly awesome blanket by the way) and wait.”

So many of my friends are liking on Facebook the first passage I wrote, which was a lie. They are thanking me for imparting wisdom that I lack.

The truth is that Pollyanna has left the building and I don’t know if she can come back.

But none of this is anybody’s fault.

And how I become acquainted with my fate going forward is my own responsibility.

I just can’t guarantee that I am responsible enough or intelligent enough to deal with it by ignoring how much it hurts.

The Autumn Fall

I’m OK, but had a doozy of a fall today.

Not only was it a humdinger, but it was my public debut.

Ironically, it happened while I was shopping for and homing in on some sensible shoes.

I only wear level, flat, gripping, narrow shoes that don’t suggest in their design that they are going to take over the walking process or rub against each other. For the past two years, I have worn nothing but Skecher Go Walks, because they fit the bill.

But today I was on my way to visit my mother who has HD and is temporarily in a nursing facility. Nervous about the visit, I decided to first check out the shoes at the local department store.

And right off the bat I had a possible SCORE with the form factor, plus the shoes were black, soft leather, meaning that I could aspire to be dressy.

I looked around for my husband and son, but they were nowhere in sight.

I had to immediately try on the shoes, I felt, because I was already fixated on them.

So holding my purse in one hand and my cellphone in the other hand, I slid out of my Skechers and into the leather shoes, and in doing so I begin to lose my balance. I swayed back and forth, grabbing with my elbows the shoe rack for size 7 shoes for support in front of me and the shoe rack for size 8 shoes to keep me upright.

Meanwhile, and time would bear out how unwise this decision was, I stuffed my feet into the leather candidates and started to take a full stride, hands still full.

Unbeknownst to me, the pair of shoes was held together by a thick rubber band. This decreased my expected range of motion by 90% and I started going down.

It was a slow fall, as I tried to brace myself against the shelving, while holding onto my possessions while not hitting my head. After hitting the floor, I assumed a crawling pose on the store floor, but I still didn’t realize that the shoes were connected and continued to try to walk with them, which only made me bang my arms and legs and back on shelves and floor and probably myself.

I thought the mishap would never stop unfolding and when my body stopped moving enough, I lay there on the floor for a minute, taking inventory of my body parts and of my possessions. I was afraid that I would be quickly expelled from the store as a suspected drunk, but I was both pleased and alarmed that the many shoppers who were in view of the event just went right on shopping.

After a while, Randy and Mark reappeared and I told them what happened. They held my belongings and watched as I safely tried on the shoes. By this time the elastic had broken off and I didn’t pitch forward.

The shoes hugged me and felt like butter. I bought them and the checkout person remarked that the theft device bubble had been removed from the shoes as well, but they had not been stained. I felt a little stained.

I went to the nursing facility and watched my mother sleep. She looks like a doll when she sleeps. I tried halfheartedly to awaken her, but my body was starting to feel sore and I didn’t want to wake her up just to say goodbye.

I limped and staggered outside to the car and it was windy.

It didn’t feel like fall anymore.

It felt like winter.


What happens when you spy on grandma

We learned that my grandmother had HD later in her life. Before then, when I was young, I spent the night at her house a lot and, from a child’s point of view, the disease manifested in two ways: she ate funny and it took her an eternity to walk.

I noticed the walking especially at night. She would always make a trip to the bathroom at night while I was still awake. It was a familiar, irregular patting that I heard of her feet touching the floor. When I first heard her foot hit the floor, I pretended I was asleep but was really watching to see how long it took her to get to the bathroom. There were periods where she was still. Then she would make a few hurried steps then wait a long time for the next step to come. The steps went sideways, backwards, forwards and diagonal. When she was about to pass by my bed, I held my breath for as long as I could so she wouldn’t know I was awake.

Sometimes I thought my cheeks would pop open, but she never caught me watching her. I’ll bet I watched her walk to that bathroom at least 100 times when I was little. It was fascinating to me that she could move that way. I didn’t associate it with anything bad, or sick or wrong. That was just how my grandma got from one place to another.

Fast forward 45 years and my grandmother has been dead for 21 of them.

But I don’t forget how she wore her hair in plaits pinned in a bun with hairpins.

I don’t forget that she made biscuits using lard and she wrung the necks of chickens.

And I especially remember how she moved. More and more, my own body reminds me of hers as it struggles to somehow approximate and perfect the gait she created. Especially at night and especially going to the bathroom. I look down at the dark floor and let the steps fall where they may, my hands outstretched. Each night for a moment, in my sleepiness,

I imagine that I am her,

with the stops and starts and eternal, bizarre march.

But I wear my hair long and loose. I make scones with real butter and I cannot touch a dead, raw chicken, much less kill one.

By the time I make it to the bathroom, my surroundings remind me that it is me in the bathroom. Me with HD. And soon I begin the slow marathon back to bed.

I am glad no one is watching.