The Reality of Becoming Quadriplegic and Retinitis Pigmentosa- Guest Post by Lilly

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Lilly

Hello! I am Lilly Longshore. I grew up in Ohio, a beautiful part of the American Midwest, but I now live in Washington State, tucked away in the far northwest corner of the nation.

A portrait-styled photo of Lilly, smiling at the camera

My Disabilities

A little more than 19 years ago, I fell in the dark at home and broke my neck, sustaining a spinal cord injury (SCI) and becoming C5-6 quadriplegic. I didn’t know at the time that I also have a genetic retina disease called Retinitis Pigmentosa (RP). The first thing to go with RP is night vision, which explains much about my fall. The form of RP that I have is a degenerative condition with no treatment or cure, therefore I am now legally blind (as well as quadriplegic).

How My Disabilities Affect Me

The physical effects that my disabilities have on me include difficulty moving around – which also means I do things slower, bowel and bladder dysfunction – which makes me slow in the bathroom, poor hand function – which means I fumble, drop things and I can’t really do some things right – like clap. The combination of wheelchair-use and poor vision means I run into things a lot.  Since my hands are busy with the wheelchair, I don’t use a white cane. I am fortunate to have recovered some mobility after my SCI and I can still see partially, so I am thankful for what I have.

The Impact They Have on My Life

The impacts these disabilities have on my life are multi-faceted and dynamic. There are issues surrounding physical limitations and vision restrictions, which I have mostly learned to work around. Then there are issues like social isolation, and attitudes and judgements from others. I can deal with the physical challenges better than the social issues.

Physical Challenges and Adaptations

My physical abilities/mobility have improved over the years, where my vision has worsened. So things are constantly, slowly changing for me. To deal with my physical challenges, my powerchair is great and provides independence. It has even become my vehicle, as I no longer see well enough to drive. I have learned to slow down and accept that I can’t hurry without setting myself up for frustration – a very important realization.

I seek out accessible outings, like hiking, at least a few times per month to keep in good spirits; and exercise is really important to me. I can swim, push myself in a manual chair for exercise, and walk on parallel bars at home. As far as working around my vision issues, I have learned to just tell people I can’t see well. 

Since I don’t use a white cane, there is no visible indication of my legal blindness. I know I do odd things like turning in front of someone I don’t see in a store, or appearing like I am ignoring someone in my peripheral vision who I simply don’t see, or getting way too close to something to focus. It can be mistaken for rudeness or eccentricity.

So, I find myself constantly explaining my vision deficit to those I don’t know. I try to educate folks where I can. I have also learned to pick my fights, since, like most of us with SCI, I do not have boundless energy; and I look for silver linings in life.

Social Impacts and Adaptations

The social impacts that my disabilities have on me are worse and harder for me to deal with. It is a work in progress and can be emotionally difficult. 

I had to cut my work hours due to less energy. This led to me being an easy target for discrimination and unfairness at work. One of my worst experiences with likely discrimination was with my new bosses. They were… I’ll just say less than considerate.

I was actually pulled into a meeting which felt much like a disciplinary talk, because I didn’t ‘clap enough’ when giving kudos to a male co-worker. I am still flabbergasted at the deficit of normal feelings in the new bosses. How loud, furious and long is a quadriplegic supposed to clap?

Other examples of social impacts include being excluded from some continuing education opportunities and even some family gatherings because arranging things to be wheelchair accessible was too much trouble or overlooked. It can be a hassle to find accessible accommodations, as we who have no choice but to use a wheelchair, fully know. But people need to try. I hope it becomes easier in the future.

When my son was little, I could not attend many of the kids’ birthday parties with him because most houses were not wheelchair accessible. So, I missed many opportunities to establish relationships with other parents.

I went for almost 18 years before I was able to go inside a neighbour’s house. When I was finally able to enter a neighbour’s home, it was because a young couple moved in across the street and the husband’s dad is also quadriplegic. They built a ramp for him to get inside, which also allowed me to enter. My close friends, however, do consistently make sure I am included.

As far as adapting to social impacts, I am more careful in choosing with whom I spend my time with. Even with my own siblings, some are naturally more considerate and inclusive than others. I work for more supportive bosses, and I, again, pick my fights. I want my energy to go where it will do the most good.

Changes

My biggest changes are that I can take a lot less stress than before my disability and I have less energy. A lot of my day-to-day energy goes to dealing with doing regular life tasks through more tedious methods. As a result, I have less to give to work and to others. I have had to learn to protect myself and to conserve what energy I do have for my basic needs.

This self-preservation can be misunderstood for selfishness. It is not selfish. It is essential for survival. On the up side, I always have been positive and resilient. This has not changed and helps me quite a bit.

My Favourite Superhero

My Mom is my superhero. She passed away before I got hurt, but she was a life-long example of strength through adversity and a fantastic model of how to gracefully navigate or endure difficulties in life.

Thank you so much Lilly for raising awareness!

If you would like to stay up-to-date with Lilly, then you can find her on Twitter, or her website, Lilly Longshore!

5 thoughts on “The Reality of Becoming Quadriplegic and Retinitis Pigmentosa- Guest Post by Lilly

  1. I already run into things in my wheelchair quite a lot so I can understand how adding poor vision to the equation must be very difficult. I can relate to being able to deal with the physical challenges better than the social ones – ableism truly is such a hard thing to have to face. I can’t believe that a boss whould tell you off for not ‘clapping enough’! How ridiculous is that!

    Liked by 1 person

  2. I loved reading this because you balance hardship and competency, an obvious result of dealing with both issues. I chuckled that finally a neighbor had a ramp and you got to go inside a neighbor’s house. What a gift.

    Liked by 1 person

  3. Hi Lily, nice to meet you. I identify with your post although we don’t have the same conditions, I am quadriplegic but through Cerebral Palsy. I have Hydrocephalus and 4 vision impairments and I am also registered legally blind. I am from England. The fact your mother is your superhero is great. I have many family members in the US and also understand about having to explain my vision impairments. Powerchairs are great, aren’t they? Thanks for your story. Mine is also on this blog.

    Liked by 2 people

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