Loss; Coming to Terms with a Permanent Disability.

If I’m being honest, I’ve been quiet these past few months (on social, blogs, and talking about progress, or lack thereof).

Writing has been too hard because life’s been hard.

I have been learning how to say YES—saying YES when my family ask if they can help me. Asking for help when I am stuck at work or the community. Saying YES when we need to change how we as a family travel and move around and access the city (our routines, activities, events, shopping etc.) It’s been a big adjustment.

I’ve also been working with my wife to say NO. I am learning the true meaning of rest and not jamming too much in my week, and ensuring that I maintain balance so I can enjoy the fun things or family time activities.

Historically I don’t take instructions well. I’m used to being in control and dictating my own story. It’s hard to be comfortable or at least accept the need to rely on others; this has been one of the most challenging but rewarding lessons.

Being honest with myself and putting it on paper makes the hurt real.

Having the head knowledge that I have had chronic pain for over 20 years and a neurological/physical disability since at least 2016; was a reality I was unprepared for.

I did not want to acknowledge that I am now/was living with a lifelong disability. (I know how ableist I sound right now.)

Over the past seven years, I have ‘got better,’ i.e., my function has improved about 3-6 months after a flair-up (with intensive physical therapy). However, the frequency has slowly gotten closer together.

Unfortunately, I have not ‘recovered’, meaning my functional capacity has only marginally improved after extended rehabilitation. I have been unable to mobilise without supervision when walking with aides more than 100-300 metres. This has been since August 2022, and my baseline means I am unsafe to mobilise in the community without support, even in a wheelchair.

As someone that finds it near impossible to sit/stand still, these last 12 months, I have felt ‘trapped’, have needed to ask my family for help, and needed to be honest with myself, that this new normal, although a reality I’ve seen before, is unlikely to improve.

I was highly embarrassed; I would not declare my disability when applying for jobs; when meeting new friends, I would explain, ‘I have sore legs.’ Explain away the limps, the grimace, and the bags full of painkillers and other medications when I travelled for work.

The struggle was I could not explain my disability to my extended family correctly, many assumptions were made, and it was too raw to continue the conversations. I just said, ‘I’m ok’, ‘it’s nothing’, ‘just a bit tight’, ‘my back hurts.’ Because those who were close didn’t fully understand the impact my disability had on my family and me, I feared talking to others, even my doctors, boss etc., at times.

I was also embarrassed because I could still work (I know, again, extremely ableist), earn an income, and provide for my family. In the narrowminded comments from my family/work, it was excused away, ‘Was it stress’, ‘Was it a show’ I was told I had these weird diseases, that I needed to ‘get my feminine organs checked’ etc. Due to medication, I put on weight, which was commented on. However, still, I was not comfortable sharing exactly what was going on (even if this was, I’m getting tests, we don’t know, it’s a work in progress.)

This negative feedback reinforced that it was all in my head; I was ‘faking’ or at least not as significant as the symptoms I was feeling or trying to hide away from.

Because I have never been honest with myself and those close (excluding my immediate family), I dismissed my disability; I’ve been waiting for my legs to magically return to my ‘normal’ (weird gait, look like JarJar Binks (Star Wars reference) but can ‘mask’ aka pretend between flare-ups that life is peachy, ‘I’m normal’.

Because of my negative experiences, I made assumptions that new workplaces, friends, and peers would not understand, so I kept quiet, made excuses, and brushed the comments away.

In 2023, I made a conscious decision, to be honest (really raw worts and all honest) with my employer, myself, and my family.

After many converations this year (connections with executives, risk team, WHS, and inclusion and acessabilty working groups). I felt I was able to be honest with myslef, I found that for the first time an organistion wanted to support me, and ensure there could be success. They bent over backwards to ensure I was confortable, had the tools for success at the workplace, hospital or home. They ensured that I was included, had a voice at the table, and a mechinisum to share feedback in a safeway, when areas are not accessabile.

Honestly, this acceptance from my workplace has done more for me psychologically than seven years of doctor’s appointments and complex specialist reports. There was an acknowledgement of my disability and a commitment to support the barriers I would face. However, this knowledge didn’t lessen who I was as a senior leader, peer, or boss.

Going beyond acceptance to inclusion has been one of my career highlights; I was finally able to be who I am, accept my disability, use equipment and aides to make my time at the office more comfortable, and have open communication around the balance I require. The balance between, working from the office, home, and the flexibility to attted medical appointments and therapy sessions.

Previously I would choose to work the 10-14 hour days excluding time for myself to recover or receive any proactive support such as therapy. I forced myself to work harder than my body enabled, without a solution or real plan on what to do when it no longer worked.

I am grateful to my family, who persistently drummed into me that I needed help, and I needed to allow them to help me. Without this, I wouldn’t have been comfortable conversing and being honest with my employer.

We still are at the beginning of being honest, getting the correct supports in place, and ensuring that I don’t lose the independence and function that I have. I have a simple goal (Hopefully with the NDIS) to receive maintenance support (hydro, physio, OT). Hopefully, with consistency, I will again see the distances between hospitalisation and rehab extend and be present more at home and at my workplace.


  1. Hi Jeramy, I know that the hardest thing is to accept our disability but it’s the only way we are able to face our reality. Having gone through this process myself I can deeply understand what you mean but I must admit that after accepting the situation everything has been better. The support I have been having here in Northern Ireland is great, especially in terms of benefits and OT assessment/assistance. I know sometimes it could be hard, but the awareness of being in need is the best attitude to keep going. Good luck for everything by a friend who’s on the same boat as you.😊

Leave a Reply