‘He WILL have a good brain, so make sure he uses it.’: Man with rare Fibrodysplasia Ossificans Progressiva seeks to ‘normalize ALL disabilities’

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“My name is Ollie. At eighteen months old, I was diagnosed with a rare, neuromuscular condition called fibrodysplasia ossificans progressiva, or FOP for short. This condition causes my muscles, tendons, and ligaments to turn to bone, and for bone to grow on top of other bone and throughout joints. Essentially, my body gets encased in a second skeleton. This results in very limited movement and also can cause a severe amount of pain. When I am at home or for other short distances, I can walk with a cane. For any further distances, though, I require the use of a manual or electric wheelchair.

I have two siblings, one older and one younger, who are both able-bodied. My sister and I live together. My parents live just around the corner from us, as do my brother and sister-in-law. We also live really close to my grandma and some of my cousins. I was born in Auckland, New Zealand. From about three months old, though, my family and I have resided in Brisbane, Australia. Despite suffering from this rare, progressive disability, I have tried not to let it stop me from doing whatever I want to do. I learned to ride a bike when I was more physically able. I tried scuba diving and skiing. I used to play sports, like ping pong and tennis.

Courtesy of Oliver Collins

I have never forgotten something a fellow patient said to my family when I was growing up, which allowed me a chance to do these things. She said, ‘It’s so important for him to have as normal a life as possible while he physically can. Let him ride a bike, let him play sports if he wants. He may get a few bumps and bruises along the way, but this is a normal part of growing up and it’s inevitable.’ This was so beneficial for my parents to hear and for me to experience. Unfortunately, my condition has progressed in recent years to the point where this is no longer possible. But I have a whole new set of challenges to face, which help continue to give me a great sense of accomplishment.

Courtesy of Oliver Collins

I work full-time as a solicitor/lawyer in a top-tier law firm in Brisbane. I have had this job since 2016. This job presents many unique challenges from a mental perspective, and really tests my problem-solving skills sometimes, but I love this part of it. I feel a great sense of achievement every day because I am employed and continue to work full-time despite my physical deterioration. When I was growing up, someone (I can’t remember who) told me, ‘He will have a good brain, so make sure he uses it,’ which is why I worked hard to succeed at school and get into law at university, and end up at a top-tier law firm. I appreciated this advice.

My employer has also been very accommodating of my disability and of me looking after myself and my health as much as possible. Last year, I started working from home at least two days a week, which has allowed me to spend a couple of days at home resting. It is physically exhausting for me to spend a full day in my office, as I prefer to walk around when I am in there rather than use my wheelchair, for the most part. But I am a social person and really enjoy being in the office when I am physically able to.

Courtesy of Oliver Collins

Given that law is heavily dependent on computers, working from home doesn’t negatively impact my ability to do the job, and so I have come to really appreciate the benefits of having these days at home to conserve my energy. It has been so wonderful my firm has embraced me working more flexibly and remotely. Over the course of this year, with COVID, the whole firm started working remotely during our lockdown, and so now everybody has a taste of what it’s like and are more aware of the benefits working flexibly can provide.

In addition to my full-time job, I have also recently joined a network of lawyers in my state with disabilities. Together, we are aiming to promote greater participation by people with disabilities in law and encourage future generations of people with disabilities to give law a try. It is very exciting to see initiatives like this popping up, and I am so excited to see what we can do. I also face unique challenges on a personal level. I live in an apartment I purchased and pay the mortgage on, which is a very exciting but daunting prospect.

Courtesy of Oliver Collins

This year, I have also gone through a major life change with my jaw. Due to bone growing through my jaw, I am now only able to move it very slightly (less than 1 cm). As a result of this, I have had to basically relearn how to eat all my food and really test myself with what works and what doesn’t. Although it is sometimes hugely embarrassing for me, spilling a lot of food on myself and taking ages to finish each mouthful, I have started to force myself to keep going out to meet people for food or keep attending work lunches.

The people I eat with have said they don’t even notice. Although I’m sure this isn’t true, they have also said they would rather have me there than not there. I know there are other people with disabilities who go through similar experiences in terms of this. Please remember—you can do it! It is hard, yes, but it’s possible. We have to have faith in ourselves, and faith in our friends, family, and loved ones. I think often times, people with disabilities get so caught up in their own heads and with their own problems.

Courtesy of Oliver Collins

I find it so beneficial, emotionally, to be able to spend more time with my friends, family, and loved ones. It helps me get out of my own head and just enjoy myself, and focus on other people more. To help me deal with the negative aspects of disability better and cope in general, I have also taught myself to appreciate little, every day wins—like when I get up and make my own breakfast or dinner independently or when I had a fall a couple of months ago and was confined to bed for a week, and was finally able to get up by myself and shower (rather than have a bed bath!).

My condition has progressed quite significantly over the past several years, and I have continually lost a lot of my independence. I refuse to give up. I am continuing to fight. To be noticed. To be heard. To raise the bar for myself, and to continue to crush the goals I set for myself. This is also part of what I aim to achieve with my blog and with any opportunities I have as a disability advocate. The disability experience is hard, that’s for sure. But we have to be noticed, and we have to open up the discourse more about disability. Having had many discussions with my able-bodied friends, family, and colleagues, I feel like there are so many commonalities between our experience and the ‘normal’ experience in terms of how we think and what we feel.

Courtesy of Oliver Collins

Disability is often viewed as less than, or as burdensome. The fact is we are more similar than we are different. I hope with my writing and posts, I can share this and hopefully help normalize all types of disabilities and open up a discussion about it. This is the only way I see us eventually reaching the goal of all being appreciated as unique individuals and celebrated for the unique, special, equally valuable contribution we can make in society if we are given the opportunity to do so.”

Courtesy of Oliver Collins

This story was submitted to Love What Matters by Oliver Collins. You can follow his journey on Instagram, Twitter, and his website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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