It is almost a year since Suzanne’s spine operation and the issues it generated (hole in her spinal cord, multiple operations to fix it and then contracting menengitis) and I find myself in deep reflection of where we are and what our future holds,
The medical profesion has left us in a little nothingness, the current situation is however frustrating and draining. We have tried our best to keep the severity of our situation private as it prove to be distressing to Suzanne to discuss it, but now we need your support more than ever. I want you all to be part of keeping Suzanne’s artwork alive through this difficult nightmare. Making this post feels a bit like giving up and has proven to be extremely difficult to write.
I have raided her Sketch books to find originals and unused images to create new artworks from but the truth is we are running short of suitable designs, Suzanne continues to keep exercising her arms and hands to try to keep her abilities up to scratch but Sketches that may have taken an hour are now taking weeks, she isnt happy with the quality of them! This is due to loss of feeling in her arms and legs and the constant pain she experiences. The medications are strong and make her so tired and irritable and often cause her to be unable to think straight. It has lead us to thinking of closing the shop and for me to seek part time work around the time I spend caring for her. Sadly the time she requires makes even a part time job out of the question and instead we hope that the gorjussart and etsy shop will contribute to keep our bills paid. Unfortunately as the months have progressed the lack of new works have taken their toll and we face stark financial problems, we do still have options available to us but I worry about our immediate future.
It has been a roundabout of highs and lows and it has taken its toll on me and I am struggling to keep up with emails and errors are creeping into the orders. In order to make things more sustainable I am looking at setting a day specifically for making and shipping orders, rather than the current 48 hr options. It will affect delivery times to a small degree, but will actually allow me to focus fully on the orders and hopefully help getting orders out on time and correctly. At the moment I am hoping to make this day a Friday or possibly Weds, I may need to alternate it each week. We are hoping to find a way for Suzanne to create artworks in her own time without the pressures of trying to pay the bills, and we do have some interesting ideas to share with you, please support us by letting us know if the idea is any good or not. Time is a luxury we are struggling to find.
I’ll explain a little of how a typical day goes from Suzanne’ s point of view.
She will be woken by myself to get her to take her morning meds before I take the kids to school, she is rarely aware of what day it is and often has no movement or feeling in her legs and sometimes her arms. The pain is intolerable and often as she wakes the squeals of pain start and I have to help her move the affected limbs and possibly rub them to help the feeling start to return ( to HER normal range of feeling!), normally this feels like the limbs are on fire for her and I find it so difficult to put her through this. After a few hours the limbs usually come back under her control but are so weakened.
After dropping the kids at School I head home to help Suzanne get her morning routines completed, often I have to wake her again for this and the short journey on crutches to the onsuite bathroom is becoming more and more difficult. More often than not I have to carry her to and from the bathroom, other than this journey Suzanne goes nowhere. The only time we have to take her anywhere is to the hospitals and that is a process that utterly breaks my heart. I can not possibly explain how painful it is to put Suzanne in the passenger car seat, lower it back so she can lie on her side with cushions everywhere and then set off on a journey of her screaming in agony all the way there and back. Even in her wheelchair the pain persists and by the time we are seen she can’t answer simple questions like her name.
Our immediate goals are to get her able to sit in her wheelchair comfortably so thatour previous ‘normal’ life may become a possibility again, anything that allows us a degree of what we used to love back, but we have no guarantee’s that this will ever happen. This is something that I have come to realise I have not accepted yet, I have attended many carers group meetings and now realise that I still hold expectations for our future that are now unrealistic. It is so simple to assume that she will improve with time but the damage may be permanant. The orginal operation that left a hole in her spinal cord, the loss of CSF fluids, the many surgical procedures to fix the hole and the menengitis have all played a part in her current condition. All could have lead to this damage, the only medical opinion we have is that if it doesn’t improve soons, it more than likely never will. Tthings are slowly getting worse, its so hard to know what positives we have when things are just getting more and more difficult. We have exhibitions that are near impossible to get new materials for and again I scour old sketch books to find unused gems, sometimes Suzanne will colour them with her amazing pens over the weeks, and it leaves everything so last minute to ship to the exhibitions in time.
We decided we needed to involve you all in this situation not for sympathy but more for your understanding and support. You all sent words of support and prayers when Suzanne was in hospital and this was a wonderful crutch, what we need from you now is the same, and please do not worry about ordering and filling my plate or overwhelming us with work, I will make time to get orders out with support to look after Suzanne for that day, this will be easier as the support services become more available to us.
The only thing we ask is to not request custom works or commission for the current time, we will make it very obvious if a time arises where this becomes a possibility again.
We promise we will do everything we can to keep our shop open, and keep you all updated through the dark times… and please do keep an eye on the wonderful products that Santoro are making (2011 diaries out now), and please do get your local shops to contact them to stock items. Santoro is our bright future and we hope Suzanne will be able to build on it in time in some way. For all the exhibitions, we are moving mountains to get works that are unused and exciting and unseen (including new works made over the weeks) with the new frames we have that are amazing, so please do pop by to see the works and if you love them, support us by buying them.
We know this is a difficult financial time for the world, and money is difficult to find, and with so many good causes around asking us for support and donations, I just have to say Sorry, we would love to donate and help but we’re struggling to keep our house as it is, and all our time is used up with Suzanne’s care needs and the needs of day to day life. We have donated earlier in the year to some charities, and we love to support them when we can. I hope we can support these causes again in the near future.
Thank you for your attention and please do encourage people who may be interested to read this post, and please comment below. Do not worry about hoping Suzanne will get well soon, its something I continue to do even in the reality of its unlikliness.
Before you all warn me to take it easy and make time for myself, I have spent months growing a support network of people that I can moan at and run to with problems, these are wonderful external services that I only wish were easy to find, our local carers centre has made all of this possible and I owe them a lot. So I will be looked after so that I can continue to care for Suzanne to the highest degree. Thank you all for your support in the past, and I thank you all for your continued support.