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Transitioning to a new blog

I will be leaving CUNY shortly.  So I have decided to create a new platform.

Please visit me there  Bookmark it.

The Color of Angels

First I need to own who I am.  I am a white woman, I am 62. I was born with cerebral palsy.  I have been remarkably high functioning until age began to do a toxic dance with the CP. At some point in the last decade I transitioned to pushing a rollator. 

My regular readers will know that life has gotten more complicated. I have been diagnosed with a genetic form of ALS.  This has combined with CP to contribute to a significant level of weakness.  As I have continued to move through space and commute to NYC as needed.

In the process I have noticed something that has reminded me strongly why I first got involved in antiracism work so many years ago.  As a disabled person I find a lot of common ground with other marginalized people. 

When I am in trouble, help arrives.  Arriving at the Chambers Street subway station and discovering the elevator is broken.  Riding a midday train and there is not a conductor in sight.  Walking up the ramp at 199 in a windstorm. I was almost knocked over by the wind. I screamed and help arrived.  

In each one of these occasions the kind hands that reached out to help were the hands of people of color.  The eyes that saw that I was in trouble were those of people of color.  

I cannot express my gratitude enough for each person who keeps me safe as I move through space.  

A Painful Decision

A Painful Decision 

In the Fall of 1994, I was newly pregnant. I was working as a part time librarian at my local graduate school library.  Lets just say that I did not carry well and I left my library in an ambulance.  Lacking sick leave, I resigned a couple weeks later.  

This came into my head the other day as I was thinking about the beastie that now has latched on to me.  It is progressive. I have already said I am getting a feeding tube.  My lungs are under attack.  Next up is my limbs. I am already dealing with weakness in that area.  I love you all, I don’t want to leave BMCC in an ambulance if I can avoid it. If I can, I would like to leave upright.  

So that is why I have announced to HR that I will be retiring effective 8/28/24.  I believe that will be 15 years. I will be creating a plan to use my accumulated leave between now and then.

I have been reminded that many of you are in pain, and wonder what you can do to help.  

First: Treasure your life.  You do not know what the future holds. Those of you that have partners or children, give them some extra love. 

Second: Love our students.  I will not be returning to the one on one appointments. Which leaves a huge gap.  Ask Kathleen how you can help.

Third: Support ALS United of Greater NY so they can support us.  Can you get together a team for the ALS Walk?


A Lifesaving Choice

On Thursday I got an appointment with the ALS Clinic at Columbia. I asked my new doctor, Dr. Harms, about my prognosis.  What he said really shocked me and flipped my world view around.  He said that I would lose my ability to swallow in 6 months.  I do believe him because there has already been a remarkable pace of change since last summer.  

I went into this meeting believing that feeding tubes kept elderly people alive when they really should be released.  I am 62, and still a working professional. I am writing another book.  I can’t leave yet. 

So I flipped,  I will be getting a feeding tube. I have work to do. I want to put this out there as good news! I’m having too much fun. I can’t leave.  Therefore extraordinary steps will be taken to keep me alive!

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


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.
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.
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