In Memory of Oliver Collins
9/16/1993 - 04/21/21
When we set out on a quest to create our Chronically Empowered book, we never imagined one of our own would pass away before the book was released. The news of Oliver’s passing has come as a great surprise and is so very saddening. As we thought about what we could do to respect and show appreciation for his life, and what he has shared with the world, we decided to provide you with a sneak peek of an excerpt from the book; Oliver’s story. Feel free to share kind words in the comments, and share across our Chronic Illness Community in unity for Oliver’s amazing gift to us by sharing his story with the book.
* * *
Brisbane, QLD, Australia
“I get up every day, and I keep going. I am still fighting, long after others may have given up. And I am proud of myself for that.”
A lawyer from Australia who’s showing the world that even if you’re born with a physically limiting disability, that doesn’t limit the possibilities of what you can do in your life with hard work and perseverance. Anything is achievable with the right attitude, and we should all reach for the stars!
* * *
I AM A WARRIOR
My name is Oliver Collins or Ollie, and I’m a lawyer from Australia. At 18 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 the bone to grow on top of other bones and throughout joints, essentially encasing my body in a second skeleton. This results in very limited movement. When I am at home or walking around my office, or for other short distances, I can walk with a cane as I have a pronounced limp. For any further distances though, I require the use of a manual or electric wheelchair.
“It’s all about trial and error to find the new happy medium.”
My motto has always been “if you don’t move it, you lose it” so I do still try and always move around a little bit whenever possible. But any sort of physical exertion is quite exhausting for me, and so I have to rest when I can. I now work from home 3 days a week to give my body a bit more time to recover. Although I do enjoy going into the office from the point of view of interacting with my colleagues, I need to give my body enough rest so that I can handle the mental exertion that comes from working full-time as a lawyer in a top-tier law firm.
The excess bone that has grown can also cause me severe, chronic pain. I don’t like taking pain medications though and try to avoid them when I can. My attitude has always been that distraction is just as good as taking a pill, as I find that if I can get my mind off the pain for long enough, then eventually I will stop noticing it and can properly get on with my day. Some of the best distractions, I find, come from spending time with loved ones. I am a social person, and I get a lot of benefits from spending time with my friends and family. I also find that spending time with others helps me to stop focusing so much on myself and my own problems. My loved ones are also a great support network for me, emotionally, in dealing with the many trials and obstacles that inevitably come when one is facing life with a progressive, chronic illness like mine.
Another way I distract myself is with new experiences. I’m a bit of a foodie and so I love going to new restaurants and trying out new dishes. This has been challenging for me the past year, as my condition has now affected my jaw and I am only able to move it a few millimeters. But I have just had to adapt the way I eat and adapt some of the things I eat so that I can still go out and enjoy myself. I can’t eat steak anymore, sadly, but I can still enjoy lots of different things. It’s all about trial and error to find the new happy medium. I also try to wear dark clothes as eating can now be a bit messier. But with dark, patterned clothing any stains are much less noticeable.
I also have a great support team of carers who help make sure my life runs as smoothly as possible (there are always a few surprises when it comes to dealing with a disability like mine). I am unable to get dressed, in order to go to work and be the best version of myself I can be. So they come in every morning and help me with this. They also help ensure that I am able to have a balanced and healthy diet, as even though I love cooking it is often too difficult now to move around the kitchen with a walking stick and make the things that I like to eat. I also have another person come in three days a week when I’m at work and do all my grocery shopping, cook some meals and snacks for me, and make sure all my clothes are clean and ready for work. They also help take care of my dog and generally take care of all the other errands that I need to have done to try and take some of the pressure off myself. They are an amazing team, and I’m very lucky to have them. I also have an amazing family around me who have been there with me from the start and who have been invaluable in supporting me in all aspects of my life – physically, emotionally, and mentally.
My family has also pushed me, which has been so great in helping me grow as a person irrespective of my physical ability. Even though I have a disability, my brain works perfectly and my family’s attitude has always been that I should be treated just the same as my siblings and everybody else. They have not cut me any slack just because of my disability, and I had the same high standard I had to achieve at school and university and was expected to have the same ambitions in terms of my career. Because of them, I think I have a better appreciation of the hard work it takes in making my life run smoothly and also make sure that I had the drive to succeed in my studies and get the job I have now. There aren’t many other disabled lawyers that I know in their fifth year working at a top-tier law firm. But I’m hopeful that by continuing to do what I do, I can help change people’s perspectives so that a) other people with disabilities thinking about becoming lawyers will know that it is possible and that they should give it a go, and b) law firms can know that disabled employees can fulfill the role just as well as our non-disabled counterparts and so we should be given a chance.
“My body has been dealt a bit of a rough deal – with this illness and with the near constant pain and exhaustion it copes with – but I am still going despite it all.”
I think, too often, people with disabilities are told no or people say “that will just be too difficult for you” so they don’t bother trying. We need to change people’s attitudes so that, instead, people with disabilities are told “yes, we just might need to do it a little bit differently.” And this is the same in terms of careers, travel, living independently, and many of the other “normal” things that everybody strives for in their lives. These can all be achieved, for everyone, with the right adaptations and the right attitude.
That’s one thing I love about my life. So many of the things I didn’t think were possible, I have been able to achieve with hard work, perseverance with a little bit of luck, and a good support network. I love that I live in an apartment that I own, just like so many other “normal” 27-year-olds. I love that I am working at a top-tier law firm. I love that I can put on the nice clothes that I like to wear and go out every day that I want to and live my life just like everybody else. Sure, I might need to plan things a little bit further ahead, and there might be a few more factors that go into me planning things – like arranging for a support worker, and then finding out if there is an accessible entrance and bathroom, and whether the wheelchair will be able to fit under the table. But I have been able to achieve everything I set my mind to.
Another thing that I love is that despite all the bumps and lumps and weird bony protrusions I have around my body, my body is still going. My body has been dealt a bit of a rough deal – with this illness and with the near-constant pain and exhaustion it copes with – but I am still going despite it all. I get up every day, and I keep going. I am still fighting, long after others may have given up. And I am proud of myself for that. Some days, the fight seems more exhausting than others. But I don’t let that stop me.
Last year, I started seriously trying to advocate for people with disabilities on my blog and using my Instagram page. I hope, by posting about my experiences and trying to be encouraging of other people with disabilities, that I can do my small part to help shift people’s perspectives and encourage others with disabilities to set goals for themselves and to get out there and crush them. I think that social attitudes still have a long way to go before we are closer to equality for people with disabilities. I think people with disabilities also need to change their attitudes though – we need more people with disabilities to get out of their comfort zone, and get out there and make people see us and make people change their perspective. It’s not an easy fight, that’s for sure. But if we have strength in numbers then eventually we will win.
This is what I would love to see. And this is something that I really love doing at the moment – advocating in this way. Everybody’s experience with disability is different. If I can connect with anybody, even a small number, through my sharing and through my writing, then I am making a difference and that is making a valuable contribution to their lives. This is something else we need more people to do – the more people sharing a wider variety of disability experiences with the world, the more likely we will get to a point where every single person, disabled or not, is appreciated for being unique and different. We are all the same, in that we are all different. We are all perfectly imperfect, and it’s high time we all realized and appreciated this.