G’day friends long time no see! Life has been full of unexpected changes lately, some amazing changes that have me giddy, and others that are leaving me in I suppose mourning.
Everything in life has an expiration date; even life itself has to come to an end at some point. It’s just the way things go. People often say, ‘I will never stop doing this’ or ‘I love this too much, why would I ever want to do anything else?’ But the reality is there is always a time when it is the last time you did something, but you never noticed.
The last time you watched weekend cartoons, the last time you played your favourite Vinyl, did that walk, stayed at that unit, hugged that favourite person.
Sometimes, you notice the end is in sight, and despite your best efforts to slow it down, it still arrives whether you like it.
For me growing up with Muscular Dystrophy, endings having become almost second nature. Things get harder, and eventually become impossible. Running along the sand with my brother on family holidays, walking around the shops for 4 hours, walking without pain.
That said, even though endings are a part of my journey, it doesn’t mean I am any less used to them or that they hurt any less.
Despite everything that has come to an end in my life, the one that I have been dreading the most since I was diagnosed is starting to become unavoidable.
My mum no longer being able to be my ‘support worker’.
I have been so fortunate my entire life that I have never needed to consider hiring a support worker or carer to help me day-to-day or take me places. Mum has always been the one to take me to appointments, go on shopping trips with, and basically anything that revolved around me leaving the house.
This has drawn criticism or comments from people. In years past, I have been told that it’s probably a good idea that I find outside care so Mum can do what she wants to do. I have been told that having practically no degree of separation from her is not healthy for either of us and that finding a carer is beneficial for both of us.
Even though those people were, I think, coming from the right place, their words read ‘you are too much’, ‘you are a burden, a problem, selfish’. When you have been feeling this way practically your entire life, it hurts to hear people say things that read this way.
Fact of the matter is, they don’t know that my mum and I have an understanding and an agreement. Years ago we sat down and said that as long as both of us are happy and able – able being on her part – she would continue being my support worker/ carer. If I ever got to a point where I wanted to find someone else, then I could say so, without judgement. And likewise, if mum got to a point where she could no longer physically help me, or if life got too hectic that the arrangement wasn’t working, she could tell me it’s probably time to find someone, without judgement.
Safe to say neither of us thought that we would end up saying the words ‘I think it’s time’ for many, many, many, years. However, the one thing in life is that we are not in control at the end of the day, despite our best efforts. We have to hold on for the ride and see where life takes us.
Well, that time we have both been silently dreading arrived a few weeks ago. Our professional lives have changed drastically since last September, with my parents starting a new business venture. With that comes long hours, sleepless nights, and just having to do your part to make sure it is a success.
The flexibility that both Mum and I once had prior to the business venture is a distant memory. Mum is now working full time and often 12 hour days, and I am trying to do my best in digital marketing, my own personal projects (which I can’t wait to share), making sure our dogs, or should I say my puppy, don’t destroy the house, and taking care of dinner on a weeknight. Hello, truly adulting!
I have had some incredible opportunities pass me by because I was unable to go due to my mum not having the means to come with me. Despite trying to find ways around it, I needed someone with me and on such short notice it just wasn’t possible. My life isn’t as simple as millions on this planet. I can’t spontaneously decide to go to the beach for the afternoon, or go overseas for a work trip when the opportunity arises, or just get in my car and go to that book launch or simply go to my appointments without thinking.
Before committing to anything, it takes planning and checking calendars. Previously, all I had to do was say, ‘I have this panel I am speaking on in Brisbane,’ and my parents would say, without thinking, ‘ Sure thing, let us know which day.’
Now, life is different, which is honestly so beyond exciting for everyone! I am so proud of my parents and everything they are doing, and I am equally so excited for my brother.
I am at a stage in my life now where I want to start traveling, start attending conferences, and attending functions. Unfortunately, the timing and the ability to have mum help me with getting there and helping me when needed is not as flexible as what it once was.
So, a week or two ago, Mum and I looked at each other with tears streaking down our faces and pretty much said together, ‘It’s time’.
For me, having a support worker is the last piece in my disability acceptance puzzle. I have put off for so long, because of our agreement, finding a carer or support worker, because I despised the thought. Call me selfish for refusing to find a support worker and getting my mum to fill that role, or call me ableist for refusing support workers I simply don’t care.
Having mum be my primary carer/support worker for the past 25, almost 26 years has been such a blessing. Because of this, I feel like I have a close relationship with her compared to perhaps other people my age with their mum or family member. I would be with mum pretty much every single day, and the times she would drive me places and help me get around, and yes go to the bathroom, it was almost like best friends on a friend trip, it was my normal and I didn’t feel all that different.
Having a support worker means there is truly no escaping around the subject of being different. Being disabled. Now let me be clear, there is nothing ‘wrong’ with being disabled. However at the same time there is nothing wrong with saying sometimes it just sucks and there are days when you really don’t want to be reminded of it.
And frankly it makes me super anxious having someone else help me, especially for the more delicate tasks. I have heard horror stories, and the lack of qualifications people require to become support workers/ carers also make me nervous.
However, as the weeks have gone on and I start having conversations with potential support workers, I am noticing more and more that with it potentially comes more freedom.
For example, I want to attend a digital marketing conference in May, but it would be impossible if Mum had to come with me because it’s in Sydney for a few days. With a support worker, attending that conference becomes slightly more achievable.
I was meant to be in America, as I am writing this, for an exciting eight weeks or so, attending some events, but I couldn’t because Mum wasn’t able to come with me. Obtaining support workers over there was going to be a little more complicated, especially since getting out of plane chairs by myself is impossible, and there are limits to what flight attendants can help with.
Having a support worker who isn’t my mum, in a way, means I can start doing the things I really want to do almost without thinking—provided my support worker is available, of course.
In a way, it provides me with a different version of independence, even though my independence will never be the true definition of the word.
Am I sad this chapter is coming to an end? Absolutely. I am still crying my fair share of tears over it, as is my mum. She is my best friend, and vice versa. I am so blessed to have a mum who, without second-guessing, wanted to be my support worker and take me to all the places I needed to go.
Not being able to share perhaps some incredible things with her in the future is going to be a tough pill to swallow, but sometimes life has other plans that require adjustment.
Does this mean though that she will never be able to come with me or take me places? Absolutely not! She is still my number 1 support worker, and I will choose her whenever she is available. Because even though we both said its time to find someone, doesn’t mean that she is stopping completely from being my support worker.
This is giving us the opportunity to do the things that life is calling for both of us to do at the moment. Which is a good thing.
Seasons end, but with a new seasons comes new beginnings, adventures, opportunities to experience and learn from.
So while one chapter is coming to a close, I am eager to see where this new chapter takes me and, of course, my mum. So far, I have had two weeks with a support worker, and I am surprised at how effortless it has been… But that story is for another day.
Till next time,
Rhi.