Author Archives: Robin Brown

I don’t know

I don’t know. 

Many of you have already heard the first part of this story.  On 6/12/23 my husband was out of town,  I was rushing home to meet the air conditioning repairman.  I had a catastrophic fall.  The broken bones were soon mended, but other symptoms began to appear. Some have noticed that my voice has gradually deteriorated, despite speech therapy.  It’s not only my voice but also chewing and swallowing that has been affected.

We have sought medical care. The first couple of doctors and therapists kept saying, this must be aging with CP.  So, it’s taken a while to get attention.  I’m wondering if this train would have moved faster if I were able bodied to begin with. 

I have challenged my neurologist to put a name on this beast that is attacking me.  As part of that conversation we told her that my father and my grandfather died of ALS.  To understand what happened next, please understand that I have been hoping and expecting that some doctor somewhere would listen to me and claim me.  Well, it happened, she shared a video of me with the motor neuron group and they said “get her tested!”  The tests have shown that I have ALS.  I have not yet spoken with the man who can tell me how long I have. 

I want to take a moment and honor my Dad and my Grandfather.  

My father’s name was Raymond John Deland. He was a meteorologist who, when I was a child he worked for NYU in the Bronx (Shout to Bronx Community College). He is who I am thinking of when I describe myself as a second generation academic.   He was a kind and gentle man. I have read his autobiography. He was crazy about my Mom.  He was diagnosed in 1984, and passed on 4/1/91. 

My grandfather Charles Mervyn Deland, was a very interesting man.  He was a doctor who spent a lot of time in the tropics, and was knowledgeable about tropical diseases. My Dad was born during his service in New Guinea.  He died on 7/11/62.  .  

Of the two I think I may have inherited the gene, at least,  from my grandfather, meaning I have heard that his disease looked a lot like mine. What gives me hope is that medical science has come a long way since 1962.   

Which brings me back to what I was thinking about on the way in this morning.  I don’t know how long I have.  As I stared at that I realized  that none of us knows how long we have.  It is the human condition.  You don’t know if something will happen today, or next week or next month.

Please be grateful for each day.  I get up in the morning and I am grateful that I can breathe. I am grateful that I can still walk.  And I am grateful for my beloved husband, who has not hesitated to step up and walk this journey with me.    

The complaint committee

I am so grateful for the love and support that I have gotten from you all during this season.

I am out of the sling.  The plan is to go into NYC to my office on Monday.  I made so much progress yesterday, I really felt like I was getting stronger.  Then in the overnight, the complaint committee was heard from.  My muscles have been on holiday, and now they have to show up for work, and they are not happy!

So I got up sore, but willing to keep working at it.

What I am really absorbing is that when I retire, I am going to have to go to the YMCA every day.  I can lose power really fast and  because I don’t have much power to start with, the loss can be debilitating.

Stage 2

7/3/23

I am really grateful for the number of people who have expressed concern and best wishes for my well being.  So what follows is a report, in terms of where I am right now. 

First, by the end of the first week I was up out of the wheelchair.  Attention was refocused on my left arm.  I have been in a sling more or less full time since I saw the doctor for the first time on the 19th. 

I saw the doctor again this morning. Progress was noted, but sling will be necessary until the end of July. However there has been one major change.  I can type on my lap.  That means I can show up for work virtually until I get the all clear. 

Once I return to NYC, I will open a conversation with my physiatrist about the disabling muscle spasms that were a feature of the first week. 

I wanted really badly to be past this already.  Nothing doing.  Time to just accept that healing takes time. 

 

Never take anything for granted

Not taking anything for granted.

I would love to have all of my friends and family to take a moment and recognize that they are what we call “temporarily able bodied.”  There is a couple at church who have been impacted by this.  I don’t know the story, but he is now a paraplegic.  I have been thinking of them as I suddenly discovered I needed a wheelchair. 

My journey began last Monday. I was rushing home from work, over tired from how far I had already walked. I was pushing my rollator. So I landed with my arms outstretched.  I have a fracture in my left shoulder, but what is more striking is the damage on my right side.  Walking became excruciating.  Even now, four days out, I cannot put weight on my right foot without serious pain.    

I am now in a wheelchair.  That means that going to the bathroom is a project. Going across the apartment for anything is a real chore.  I have also lost range of motion in my arms.  Reaching for something in the cupboard is unthinkable.  I would be up the creek if it weren’t for my beloved husband.  

This to shall pass.  I’m all ready better than I was in the first two or three days.

When I am well, and the wheelchair has been folded and put away, I hope to be grateful that I can get up and refill my water cup. I want to be grateful that I can do chores.  I have a renewed appreciation for what it means to be able bodied. 

 

Being There

A couple months before my library opened last summer I began having muscle spasms in my lower back doing chores in the kitchen at the end of the day. I began to improve when my library opened. I felt better when I went to work. Going into work was my medicine.
As I have said many times, that’s the right answer.
It’s simpler and cheaper than getting a bigger apartment. I am very happily married. My T is my rock. He is working remotely.
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Being on hand to help. People are coming to the library expecting somebody to be there. I have had several conversations this week already and it’s only Wednesday. I cannot do that part of my job remotely.
Doctor’s appointments.  We live out in suburban NJ. We use my health insurance.  Providers that take my insurance out where I live are few and far between, and mostly difficult to get to, given that we make the choice to live without a car.  Plus surprise bills are much more common.    These problems don’t happen when I go to the doctor in NYC Anything that is not critical, I come into NYC for.  This was really awkward when my library was closed. I have recently been having good experiences with NYU PT.  In most cases I go late in the afternoon, after working a partial day on site.
After saying all that, it seems important to acknowledge that it’s hard work. That’s why I take Fridays. By Thursday evening I am completely done in.

A new stage in my disability

I guess  the story begins with overall  muscle weakness.  As I have said before, the inactivity of the pandemic  was not good for my back.  I became hunched over.  There have been a series  of problems this year.  The first was back spasms that appeared at the end of the day.  They began to abate when I returned to my commute. Then about 6 weeks ago I started waking in the middle of the night with truly frightening back pain. This was not intermittent.  It was 7 days a week with no relief.  I would not call myself brilliant, but whatever gifts I had were dulled by really horrible sleep patterns.  (Plus I can’t do caffeine.) I remember one night I considered waking my spouse and asking for a trip to the ER.  When I went back to sleep I dreamed that he took me seriously and starting packing for the trip.  Eventually I devised a treatment with a NSAID ointment and heat that allowed me to go back to sleep
 
I did seek medical counsel. It took a while. First attempt to prescribe didn’t work.  The third doctor, however, said something that rocked my world and gave me some practical things I could do to get better.  She told me that  my gait, unsupported, was causing back stress that was coming out in the middle of the night.  As I picked up a cane, immediately things began to change.  I am taking a lumbar support brace very seriously.  I am doing the best I can to walk with either a cane or a rollator.  This is harder than it looks. Several times recently I have noticed my cane is on the other side of the kitchen.  This is a particular challenge because the pain relief is not immediate, its in the overnight.  I am working on letting it sink in, walking unsupported is hurting myself.
 
This caused me to reflect on the gift of having a problem that I can do something about. There are actions I can take each and every day to get better. So much of what goes on our lives we are powerless over. I am grateful to have something to do.
 
This also changes my perceptions of my disability. I am now out as someone who needs support in order to walk without pain. I simply have to accept it, and work with the process. I don’t know if PT will allow me to get less paranoid about NEEDING support. Time will tell.

Deep memories

This article really rocked me this morning:

To those who don’t know, I am a “recovering parent.” My child is 26 and we are very proud of them, they are well launched.  As I read this  I immediately I wanted to tell the author about our baby sling. No straps. Just throw it over my shoulder.   I read  “The Baby Book” by William Sears, I took attachment parenting very seriously.  We went everywhere  with it for about a year.  I believe that their first word was “down.”
I want to tell the author that they are not alone.  I want to tell them about my decision to have just one, because my body began to show signs of what we now call arthritis when my child was maybe 3 or 4.
My spouse and I worked together.  There were only a couple of outstanding moments when parenting called for something I could not do.

It is good to go to work

My journey to my Library is mind boggling.  Most of the first mile is on foot. 2 train systems. Then about a half mile to campus. Getting up from my office desk to go to the bathroom, and do public service. When the evening comes grab my rollator and stuff and rewind my ball of string. By comparison, working from home is the proverbial 30 second commute. During the pandemic and 18 months of working from home full time, I was careful to get up at the end of the day and go for a walk. I felt it was necessary. If I don’t walk, I will forget how. That basically worked. I have eased into the commute with no major problems.
However, life is more than leg muscles. Last winter I developed muscle spasms in my lower back. Particularly at the end of the day standing in the kitchen making supper was excruciating. I sought help. I won’t bore you withe the details of the journey. What is fascinating, in terms of living with CP is the final conclusion. The word is that 18 months of sitting got to me. Muscles in my lower back got weaker. This is why it doesn’t hurt to go to work. Going into my office is my therapy
This was the right answer, by the way. It would have been a truly terrifying problem if it hurt to return to work. I am not planning on retiring soon, but it did occur to me when I got the word, I am going to have to figure out how to go to the YMCA when I retire.

Is this a disability issue?

Greetings from the mid-summer. Given that travel is now possible, many of my friends and colleagues are traveling to the Caribbean or Europe, or wherever. This has reminded me that my spouse and I are not travelers. We went on a lovely one day outing to The New York Historical Society Museum. It was lovely, and we built some shared memories and shared some experiences. Then we stopped at one of our favorite local restaurants and went home and collapsed into our own bed. We love museums, so we may do it again before the summer ends. New York City is full of small and moderate sized museums. (The Metropolitan Museum of Art was judged to big and to difficult to get to.)
We both travel for business as needed. I actually consider the ALA Conference to be my vacation. Sometimes he comes with me. (My food is better when he is there to look after me.) We have talked about me jointing him at some point, but we haven’t done it yet.
However, the summer vacation, be it the tropics or a cruise or a road trip, just doesn’t occur to us. Travel is HARD. It is physically and mentally exhausting. I won’t go into details about my beloved. In our house normal is a setting on the washing machine.
So, is this a disability issue? Or are we just curmudgeons?

Anti-racist pedagogy

I want to really recommend this Ted talk on the consciousness gap in education:

 
When I saw it I was reminded of my deep commitment to anti-racism.  I believe that this is the great work of this season. Resources are  popping up at a great rate.  I think now is the time to stand together and change our world.  That’s why I will continue to highlight resources when I find them.  That’s why I will continue to write and speak on this topic when I can.
 

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