Before discussing my experiences of living with Lupus, or a Rheumatic illness, in the South West of Western Australia, I would like to clarify one very important point. I was not diagnosed with my rheumatic and autoimmune illnesses until at least two years after I had moved north of Lake Grace and this corner of the world. By the time of my diagnosis I was closer to the equator and thus in a warmer climate with access to a wider range of health and lifestyle services and products. Nevertheless, my experience is deep and my knowledge is wide ranging enough that I feel confident in commenting on this topic.
I come from Lake Grace
I grew up in Lake Grace. This is a town and shire in the center of the Great Southern in the Wheatbelt. If you don’t know the area, this detail identifies the larger locality of the town geographically and politically. Lake Grace is one of the larger towns in the Shire [of the same name] and area, but far from a large town, with an in-town population reaching just over 500, and a larger regional population of perhaps closer to 700 or 800. There is one pub as well as one other place in town licensed to serve alcohol regularly (the Bowling and Sportsman’s club), one grocery store (an IGA), a butcher and a clothing/ apparel store. From what I understand one of the two banks recently downsized, the only ATM is now a withdrawal service in the IGA and a café serves as a calm meeting place if you want a change from the service station.
The Medical Aspect of Lake Grace
The town has a doctor, don’t you worry! It seems to be a struggle to gain a trained doctor to service a town like Lake Grace on a permanent basis (grumble grumble), so we typically tend to get locum doctors from overseas. As a wee lass, he (my doctor) was from Scotland. As a grown child and into my teenage years he was from South Africa. Many since then many more have been the same. None, since that first one, have lasted long. They spend at least one day travelling to other towns, because other people need medical attention too. Sometimes a dental van, physiotherapist, ‘female doctor’ or pair of opticians drop into town with a full book for the farmers and people who cannot get to these people at an appropriate time. There *may* be a psychologist/ counsellor/ mental health attendant that comes but I am not sure and recent discussions have been vague and unhelpful.
Goods and Services in Lake Grace
For produce to be accessible in the IGA it needs to be delivered regularly from Perth or Albany. Produce is some meat, all fresh fruit and vegetables, and all baked goods. Only products that are known to sell, and cater to the largest potential range of customers are ordered in and it is a case of ‘first in first served’.
I am not telling you this to say we (yes, I still identify as being Lake Gracian) are backwards or lacking or for want of anything. Nor am I criticising the people that run the businesses. I am only trying to give an honest recount and image for the people who have never lived in a regional town, who have never left the city long enough to know the impacts of being removed from suburbia. When you travel up north to Coral Bay, you must take your own water in bulk as water is not pumped in to the site. When you go further north in this state of ours the price of things changes, sometimes dramatically, simply due to the cost of the transport to get it there. It is only a benefit of living in some of these places if they are the producers of specific key items, not pointing any fingers (Carnarvon for bananas or Margaret River for wine).
Where is Lake Grace?
Geographically, the town is located in the largest salt-lake shire in the southern hemisphere. The site is also in a lull in a large flat plateau, absent of hilly terrain thus creating the ideal scenario for rain clouds to pass over unbroken and wintry weather to dwell within. It is COLD! Recently my mum called and said she ‘doesn’t think anyone has ever been as cold as [she is] now. [She] could not remember what it was like to see a blue sky or feel [her] feet outside’. Apparently. A week of conversations like this revealed to me where my abilities in hyperbolics comes from.
As you travel south of Perth is that it is geographically one giant, ancient plateau. There are only one or two minor mountain ranges, of which even I can climb the tallest mountain (!) The southern coast of the state reaches out without inhibition or protection to Antarctica, which reaches back with all the aggressive care in the world. What Antarctica lacks in physical reach it sends in loving kisses of frozen air. These gusts abuse Albany and the rest of the south racing over the Great Southern to twinkle wind-chimes in Lake Grace each day at about 5:30pm. The Albany Doctor, it is lovingly called. My ass. Doctors fix things. This wind destroys my soul and reason for living.
So, what does this look like for someone with any type of rheumatism, autoimmune illness or chronic illness?
Weather in Lake Grace
For half of the year you wake each day to frozen grounds, mists that clear by 8 am. A chill that could shatter your bones just hangs around all this time. The town is small enough for you to walk everywhere. Indeed, it would be nicer on your car if you didn’t hurt it by starting it just to drive one block. BUT WHY WOULD YOU WANT TO WALK? The fire burns inside 24/7, it has too. You hope your work does something similar with their heaters. Outfits each day are assessed by their practical ability to hide your Long Johns. The other half of the year is fine, bearable and just like any other Australian day.
Medicine in Lake Grace
You live in a town at least three hours away from a center with adequate medical attention to help you. You hope upon hope that the resident GP, *basics* chemist and rotating nursing staff at the hospital will be able to understand what is happening in your body when you call in and ask for help. Let’s face it, you are a bit of an enigma even in the city emergency rooms. I would be willing to guess the GP has not heard of Lupus Cerebritis or Rituximab. I would be willing to put money down that most of my medicines are not at the chemist, as I have to specially order them ahead of time, even at my chemist.
The Lupus Lifestyle
All of those things that they say are helpful for your condition (yoga, pilates, heated water aerobics, special diets, avoiding allergens, specialist doctors and treatments) are not likely to be accessible. In Lake Grace it is fortunate one lady has the added bonus of being a trained yoga teacher, as well as her day job. IGA has some Gluten free food. The chemist has some vitamins and supplements. But you cannot cater for a diverse range of potential customers that doesn’t exist. The food will expire and you will waste money. I have to eat a broad range of fresh fruit and vegetables, yet half of the most accessible foods I am allergic too. I have learned to be creative and experimental. Most of the food I eat is not in my town.
My Summary of Lake Grace
I am left bitter and saddened. Can you tell? Yet, not how you are probably thinking. As I say, I still identify as being from Lake Grace. I love this place. It is in my very soul. My bones. It is who I am. I am bitter because I have come to accept recently that I cannot go back there. Not between the months of April and November. Nor can I be caught outside at night anymore. Nor can any visit last longer than five days. Nor can I travel there alone, the drive is too long. Nor can it be during or closely following an illness, treatment, seizure or change of medications. You see, my bitterness does not come from any fault of the town or shire. It is my fault, in a way. Because of the person Lupus has led me to become I am lucky at the odd chances that arise for me in which I am able to go back home. And this breaks my heart.