Becoming Disabled

Becoming Disabled
By Leisl Jaberg
(First written in April 2022.)

When did I become disabled?

In the last two years, I have finally begun to think of myself disabled. I do now consider myself
disabled, and I am on the journey of owning it. That said, it IS a journey within myself. When did
it really begin? Two and a half years ago, walking started to become a struggle for me.
Recently, in one of the online support groups I am in, there was a survey with only two choices:
Do you want to be called disabled first or a person with disabilities? I voted for both, because
for me at this time, it depends on the situation and the conversation, in addition to my still
working out my internalized ableism. Many non-disabled people are being told to use person
first language, but it seems that not everyone cares for that, either. And it is a personal decision
to use the word disabled at all.

What I posted under the survey was that at this time, I am fine with either description for myself,
but please do NOT use the word “handicapped.” Nope. No way. That is just offensive to me. I
am ambivalent about the term “differently abled.”

This all said, walking began to become a struggle for me 2 and a half years ago. I started having
pain, tingling, numbness, feeling my right foot drag, in addition to the spasms that began a few
years before that in my feet. I felt like I couldn’t move my right leg forward without falling on my
face. My right foot and ankle had not been good for several years by that point. (First sprain at
age 11, in fact.) I had been having foot spasms, too. Always tight. Four years ago, I started
having cramps in the area of the right side of my ribs. I chalked it up to the time to two reasons:
young infant and appendix/kidney stones.

I began looking up all my symptoms online because guess what? I have done it before, and I
have been correct more times than not for other issues for myself and my children. I just make
sure to use good sources. (I am a degreed Librarian, so of course I use good sources!) The
issue was that my many symptoms overlapped with so many different things. MS? Lyme?
ALS? Something autoimmune? It wasn’t as easy this time as diagnosing my own plantar plate
tear back in 2014 was, because of so many varied symptoms.

However, back to my original question – when did I exactly become disabled? I remember being
surprised several years ago when I learned that Asthma and Allergies were covered under the
ADA act. (This certainly didn’t help me back in high school when I couldn’t run the mile in under
30 minutes in 90F degree heat, humidity, and the air pollution of the city in which I lived. The PE
teacher didn’t care. He didn’t “believe in” asthma.) My internalized ableism, when I learned
about asthma (I also had/have many allergies) being covered in ADA, did not let me consider
myself in any way that I might have a disability. Asthma was asthma, in my way of thinking,
since I was diagnosed as a little girl. I was just the weird, shy girl with asthma, and other odd
pain that must have just been growing pains. Everyone has pain, right? I did know not
everyone had asthma, and was jealous of those who could run and run without stopping to
cough and wheeze.

I’ve come to realize now that it was hard to keep up with “people with normal breathing” (there’s
some person-first language for you!) I was just told to keep working at it, while at the same time
being told not to go through albuterol inhalers quite so quickly. Did I have to live with being
short of breath and just not use the inhaler? It took until I was 21 to get the correct asthma and
allergy meds that worked for me. They were not available earlier. Now that I think back, this
lack of meds was indeed disabling in many ways during my daily life.

Ten years ago this month, I ran in a 5k race for ALS. I walked about half, ran half, and used my
inhaler a lot, but I did it! I did it in 40 minutes. 40 minutes for 3.2 miles! My best time ever, and I
will always be proud of myself. I came in the middle of the pack for women my age, and yes, I
will brag. It was a huge accomplishment for me, and unless there are many breakthroughs, it
will be my first and last 5k race in which I run. The t-shirt is in awful shape now, but I will not get
rid of it. It is a physical symbol of my success.

Nowadays, it feels like a 5k race to walk around a museum with my forearm/platform
(adjustable) crutches. Everything gets tight, and spasms, particularly my right side. Doing
physical therapy sets makes things worse for the most part, unless I take muscle relaxants, but
then it catches up to me later. I am exhausted almost all the time. I am in some sort of pain all
the time, but now I know it’s not normal to be in pain all the time! It only took me 47 years!
First, I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), one of several
variations of the connective tissue disorders, because my dad had it, too, it was discovered. I
used to compare how far my knees could go “backwards” compared to my dad’s. He always
won, but mine weren’t too shabby! (I later learned this is called hyperextension.) It was normal
in our family to be able to do the typical “EDS tricks.”

However, getting to the EDS diagnosis was quite the process. It was not like others who wait
for years for the diagnosis. No, in fact many other autoimmune and neurological conditions were
ruled out first. However, my anti-GAD65 levels came out high. I did not have Diabetes. I do
have Hashimotos thyroiditis. One neurologist thought I had Stiff Person Syndrome (SPS), but
she was not sure. SPS is also thought to be autoimmune. She thought my walking gait was
interesting and I allowed her to record my walking to share with some other colleagues. The
other colleagues decided that it was more likely EDS than SPS, because SPS is so much rarer
than EDS. I had vaguely heard of EDS, but it hadn’t come up often in my previous searches.

While it was very validating to finally have a diagnosis that finally explained so many things
since I was young, it did not help with my treatment or how to solve it. I was literally afraid to
walk. It felt like every step I took that I would fall. After months of even more exhaustion trying
to walk and keep up with my youngest child, I finally ordered crutches for myself (Smart
Crutches, so I could adjust for my wrists) because a cane was not helpful, and painful with my
wrist and thumb situations. My spouse was opposed because he wanted them to come from a
doctor, although I had learned by then from support groups that many EDSers do not get the
support they need from medical professionals, particularly when it comes to mobility aids and
braces. (Ableism in the medical profession is another discussion altogether!)

Finally, I could walk without nearly as much fear of falling! It was amazing! I actually fell less! I
was a little anxious at first about using them in public at first, because what if others thought I
was faking? And then I would remind myself that not falling was best, and that it was my
internalized ableism telling me lies. That was when I started thinking of myself as disabled, now
that I am mentally processing this as I am typing. And I love my mobility aids now. They
changed my life for the better, and not only with walking, but with proprioception (which is a part
of EDS in many cases). They give me a better handle on where I am in space. Literally!

While my crutches are great for generally not falling, my walking speed is getting slower and
slower, and this doesn’t leave me with a great deal of freedom. As I walk, my pain levels get
worse, and my muscles get tighter. Sometimes I just need to sit down, but then I feel left out. I
can’t keep up with my family, and it is so demoralizing. For a year, I have been thinking about
getting a wheelchair for longer occasions/outings/excursions where more walking is involved. I
want to be able to keep up with my family and friends, and have that freedom to not feel
exhausted and in pain instead of enjoying new experiences and fellowship.

This is NOT only from EDS. Remember, my original neurologists were looking at either EDS or
SPS. They did not consider that it could be both. A year after my EDS diagnosis, I saw a
new-to-me doctor who takes a year to get in with, unless there is a cancellation, or you are a
very interesting case. I got in three months earlier than my original appointment. It was quite
exciting. I was supposed to see him for my Dysautonomia/POTS, but it was decided that I was
generally doing okay with my salt intake. I agreed. I was generally doing okay. He also said
that it was obvious that I have EDS, and have had it all my life (genetic, duh!) That was very
affirming!

The doctor watched my walking with and without crutches, and then said, we have to also
consider SPS. I asked if it was instead of EDS out of anxiety, because by then I had developed
some EDS identity. He said no, in addition to EDS. I was shocked, actually. My previous
doctors had made me think as well that it could only be one or the other. We did new
anti-GAD65 testing, and my number was higher than the year before. (Something to keep in
mind: The antibodies are only positive in 60-80% of all SPS cases.) SPS is a rare progressive
Central Nervous System disorder that is believed to be autoimmune in nature. Basically, my
muscles, particularly in my legs, back, and trunk, don’t relax when they are supposed to.
Sometimes my back and side spasm so tightly that I can’t get air into my lungs. And that is
without even having an asthma attack!

No lie. It’s scary. It’s even scarier when you have other doctors who don’t even bother to look
up your conditions before you see them. A waste of all of our time, and extremely disrespectful.
The doctor I brought up the ambulatory wheelchair idea with had not bothered to even see what
SPS is (not even google NIH? ugh), and said the wheelchair idea was ridiculous because then I
would never walk again. (Using a wheelchair part-time needs to be normalized, but again, a
different article for that!) I didn’t even know that such a thing was a possibility until I started
joining online support groups. Many EDSers and SPSers use wheelchairs part-time. They
provide pain relief and freedom. Still, I would never give up my crutches, and I still feel fairly
confident walking in our house sometimes even without a crutch, as long as I have the couch
and the walls. I will never give up walking unless absolutely necessary. I just want to have the
freedom to keep up with my family with less pain, and less anxiety about not being able to make
it through our activity. I just want to enjoy whatever it may be that we want to do.

With all of these issues and more, I do think of myself as disabled now, even though it took me a
few years to get to this place in my mind. I have to remind myself to not be ableist in my own
thinking. I have to take care of myself to take care of others. I have to protect myself around the
medical professionals, and others that don’t know as much as I do about these conditions and
my own body, and those that don’t “believe.” I am starting to try to educate others. It is a work in
progress for me, and I am definitely growing as a person.