Australia

My Invisible Disability

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A word cloud comprised of many invisible disabilities. Credit: Invisible Disability Australia

I have been a pretty much open book most of my life. I share myself honestly, give my opinions (even if unsolicited), and welcome tough conversations. I am an introvert and enjoy mostly one-on-one or small group socialisation. I have the tendency to put on a tough, resilient, independent image to all, so it’s been very difficult to contemplate sharing my invisible pain. But as I say to my daughters, “you have to name it, and claim it”, I need to honour my own mantra now; I see no other choice.

For those friends who knew me way back in high school and mid-twenties, you undoubtedly remember me (somewhat) as an athlete. I ran varsity track; competed in the high jump. I was in alpine ski club. I moved to Lake Placid after university, where I prided myself on not having a car, and getting around and to my 5 part-time jobs, on foot, wheels, skis. I frequently ran around and swam in Mirror Lake. I rode my bike to and from work where I sold bikes, skis, and outdoor gear. I rode my bike up Whiteface Mountain toll road, and went back country and XC skiing with my friends. I tried many of the olympic sports like speed skating, luge, and biathlon. I even took up snowboarding, albeit that was short lived. 

I had an episode where I couldn’t walk for 3 days due to severe muscle spasms in my mid-back. It was a long recovery and felt like it never really went away. I called it where I carried my stress. I saw a chiropractor at the time, and he noted I had arthritic changes happening in my lower back, but there was nothing I was too worried about, as I was young. It wasn’t until my thirties with severe lower back issues keeping me down that I got properly diagnosed with degenerative disc disease (DDD) in L4-S1 if you speak spine. I have always had good and bad days, but it has always plagued me. I think I just got used to the pain, sucked it up, medicated as needed. I have missed social gatherings, weddings, my kids’ events, and for the last couple years of my tenure at GlaxoSmithKline, I was mostly working from home. My work colleagues may remember when I was at my worst, unable to sit, so I put my laptop on a box in my cubicle and worked standing up all day, or kneeling on the floor while at the table during group meetings. It was exhausting.

Fast forward to Australia. I have been here since 2015, and miraculously due to life and work changes, I have been able to avoid having regular treatment for the DDD. My girls were having trouble coping with me having to work long hours in the city, so I started what became Sandee Rain Boutique in April 2017, and will celebrate 5 years as SRB on 17 Dec. I wanted to be there for the girls, and it’s certainly been the only thing allowing me to still do so. In early 2018 I was diagnosed with breast cancer. I think I handled that on my own as well as possible because I had to get through it for my girls. It coincided with my marriage ending, so cancer was a catalyst and a distraction; I had to live to be with the girls. Thankfully, even though stressful, it resolved with the girls and I staying and creating a life in Australia. We are dual citizens.

Much later after cancer treatment, I was literally flying high. I enjoyed my adventures with the girls, and worked the Boutique around our lives. I began to accept the changed body form, the scars, the radiotherapy tattoos, the numbness in my armpit from 2 tumour and 1 lymph node removal surgeries. Once I accepted myself, I knew I was in a better to place to be in a relationship again. When Greg and I met 3 years ago, I was enjoying life, I was upbeat, I was strong. I was also about 63 kilos.

About 2 years ago, the strong nerve pain increased around the surgery areas. Although both my surgeon and oncologist said it was normal as the nerves healed in a jagged way from surgery, it would pass. It didn’t. I went for my regular mammogram and nearly passed out from pain from being pressed against the machine. On top of the never ending fear of cancer’s return, my body wouldn’t even cooperate with the machine that saved my life. There was covid in the mix, and I wasn’t able to follow up on this except over Telehealth with my radiology oncologist. I got an MRI of the chest, and there was inflammation around my rib where the radiotherapy was targeted. If it weren’t for this one doctor, I would still be trying to smile through the pain. Apparently, I have developed a late, rare toxicity from radiotherapy causing rib osteitis. Apparently I am in the 1% of patients post breast cancer radiotherapy to develop this. I was referred to the Peter Mac pain clinic last year, and have received 2 nerve blocks to date (including a sneaky injection to my SI joint the first time). I had a follow up MRI this past October, and the inflammation is still there as well as affecting surrounding muscles. This, coupled with my DDD has exacerbated the pain. I am on medication to calm the nerve pain, and reduce inflammation. Due to fatigue and pain while resting, I don’t sleep very well, or do much activity. I am now 85 kilos.

I have had 2 visits with my pain specialist recently, and he’s told me what I don’t want to hear, I have to stop physical activity, focus on myself, rest, and heal. I have become a champ at doing this boom/bust thing where if I feel good one day, I overdo activity, and then pay for it the next several days. The only person that sees what’s happening to me is Greg. I have only recently shared with the girls because I can’t put up a front anymore with them, or anyone really. I have had to cancel plans with people I care about, and it depresses and saddens me. I have been under tremendous pressure running the business which now has to take a backseat, as well as undergoing unfathomable stress and court costs of current proceedings for over a year, on behalf of my girls. All of this adds up and affects my entire nervous system. So, for now, I need to get worse before I get better, and get out of the downward spiral. I have an amazing team of specialists who truly listen, and who truly care about my health.

In all of these years, I have tried to be brave, stoic, and manage through pain. It’s invisible, so people only see what I want them to. I’ve been hiding myself from my children and others I love. I have to say it’s truly a mindfuck to deny the pain, or even accept the pain, and accept my disability, and ask for help. So, this is me, sharing my truth and going on this journey so I can be the best Sandee possible. 

I am not the only one suffering in silence with an invisible disability, so as I say to my children quite often, “it’s important to show people grace, because you don’t know what they are going through.” 

Image of a word cloud with various invisible disabilities listed. https://www.invisibledisabilities.com.au

Scarves In Solidarity

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Scarves in Solidarity

In the wake of the unconscionable massacre of 50 innocent people in New Zealand, I was left reeling and feeling helpless, along with many others. I’m an American transplant living in Australia and appreciate the “we’re all in it together” attitude here, especially surrounding Australia’s own worst gun massacre in 1996.

What made this one different was the target. Not just open firing at a collected group of people along the likes of Las Vegas, but a religious target, Muslims.

Let me clear where I stand on religion before I go any further. I am not affiliated with any religion, and I hold myself to standards I expect within society. I have Muslim friends, my daughters have had Muslim school teachers, they themselves have friends who are Muslim, in my business I have Muslim customers and colleagues. I believe hate is derived from fear, especially of what you don’t understand, and when you’ve grown to know people on a one-on-one basis, their religious affiliation falls away and the true person emerges. Everything falls away when you truly get to know someone; religion or absence of, race, culture, gender, socio-economic status, and so on. It’s only when we take people for themselves that we gain understanding.

When I learned of the movement Scarves in Solidarity, I quickly realised I could do something to show my support for the community that has been on the receiving end of attacks, denials, bans, and phobias, merely for outwardly expressing their religion through modest means of wearing a hijab. On 22 March, 2019, supporters of the community that was so ravaged most recently within the week, were to wear head scarves as a symbolic gesture of respect, inclusiveness, and love. I struggled at first with whether it was culturally appropriate, but was willing to step out of my comfort zone to demonstrate my personal support for the Muslim community.

The scarf I chose was obvious. On a trip to New Zealand in 2017, I bought a gorgeous ivory scarf with black silver ferns as a keepsake. I wrapped my head and told my girls why I was wearing it, and walked them in to school. The reaction was mixed. Mostly people were surprised, and I got a few dirty looks from male parents. It really does take people aback to be confronted by a head scarf and that amazed me. And then, standing in my oldest daughter’s line, at least five of her classmate friends came up and told me they were Muslim but didn’t wear head scarves. It dawned on me how much easier they must have it to not outwardly show their religion, and to be taken on face value as human beings. Whereas those that are the most devout are persecuted?

I later went to AusPost where all the staff know me because of my business, and I saw my favourite customer service person, and while her initial reaction was one of surprise, we carried on conversation over our kids and I was never asked why I was wearing the head scarf. From there, I went to Coles to get groceries. People moved out of my way, some stared hard at me, yet the cashier was the one I was surprised by. He was pierced and tatted out with all things satanic and unlucky, and gave me a good once over before ringing up my groceries. But I was my usual self, starting a conversation, packing my own bag, and asking for Stikeez for the kids. He started chatting with me, as did the person behind me, and gave me extra Stikeez as I walked away. I left the store smiling.

I stepped out of my comfort zone, to step into another’s shoes, and it was so fulfilling. I truly believe the majority of people in the world are good people who don’t wish harm on others. I even posted to @scarvesinsolidarity on Instagram to show my support, and the response was unbelievable. The community that feels so vulnerable right now had an ally, and I heard from people in Canada, South Africa, Malaysia, New Zealand, Bangladesh, India, and Australia, thanking me. A simple gesture born from my own helplessness meant so much to others. It was easy on my part to do this one thing, and if it could ease troubled minds during this time, it’s one step forward for us all.

The Happiness Compass Points South

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If you’ve followed my personal migration story, you know that I moved abroad exactly four years ago today. Dissatisfied with previous jobs and their lack of opportunity, coupled with the desire for the children to have a more worldly life experience, we moved to Australia.

I started my life’s journey gradually, and subconsciously from my birthplace of upstate New York. I had a brief stint from age eight to eleven, living in Colorado with my single mother. My maternal grandmother started ailing with what we believe was Alzheimer’s and several other health issues, so we moved back to New York to be closer to her. I finished out half a year of sixth grade, and stayed with my Aunt for a while (over Gramma’s place) in a two-story house in Utica, New York. There’s something about Utica, and the extended 315 area code that is a part of the blueprint of who you become.

I’d be remiss if I skip over my childhood in Utica. It’s not the same place anymore from when I grew up there in the seventies. My recollection of my time in Utica, through the lens of a child, was that there were a lot of different cultures somehow seamlessly integrating into the fabric of daily life. My family, proudly Irish with never a mention of our French Canadian/Scottish ancestry, lived next door to Rocco “Rocky” and Marion Paniccia (their love for us “grandkids” knew no bounds). We were always invited over for Italian feasts complete with Sambuca and Limoncello, and in summertime, Rocky would bring out a fiberglass pool for us to splash around in while he sang songs to us like “Pistol Packing Mama”; these lyrics stay with me 40+ years later:

“Lay that pistol down, babe
Lay that pistol down
Pistol packing mama
Lay that pistol down”

Or we played Rocky’s Jarts game in the backyard field that was Utica College property while the waft of lilacs filled the air. We were diagonal from the Spanish-speaking Basualdos, of whom their daughter, I was best friends with in elementary school. The dinner table there consisted of heaps of spicy food, Spanish words I didn’t understand, and jokes about artichokes and how they could kill you if you “choked” on one of the leaves. And the Zogbys, the Lebanese family a couple doors down, where I played Donkey Kong for the first time in their basement. Reconnecting via Facebook with these last two families has been amazing. In elementary school, I had friends that were Polish, Persian, Greek, and African-American, and well, we just didn’t care about that stuff. Other than the yummy food and experiences we had when visiting each other, we were all just friends.

These remain my memories, even after moving to complete middle school and high school an hour away from Utica. Maybe if I stayed in Utica, my path would be different. But an hour away in a small town, I was itching to get as far away as possible once I could. So I did. I chose SUNY Plattsburgh to go to college.

I enjoyed my time in Plattsburgh, but after a chance at a broadcasting internship failed, I decided to join the real world and get any job, which led me to Lake Placid.

Let me preface, my experience in Lake Placid was amazing for a recent college graduate. I skied, biked, hiked, or ran everywhere, had zero obligations, and hung out with Olympians. I played all day, every day, and wondered in the beauty of the majestic Adirondacks. I held jobs like working in a pizza shop, a jewellery and watch shop, I was a Top 40 DJ, barista at the best bagel place, bicycle/ski shop salesperson, and my coup de grace, I went on the road selling birdhouses! All told, the birdhouse gig was the best paying experience of them all and allowed me to travel six months out of the year. Until it ended. Then I had to get super serious about my next move, playtime was over.

I decided then to head South, as my parents had done years earlier, and where there was a lot of job growth. I packed up my cat and dog and headed down to Raleigh, North Carolina in a huge U-Haul truck with what little I had. I rode the public bus daily, to an advertising sales gig for a local entertainment newspaper, then graduated to sales for data storage company NetApp. I enjoyed the single girl tech-life, complete with the purchase of my first brand new Mercedes, tickets to all sporting and concert events, lush travel, and the ability to buy my own house.

After that, I worked for a digital presentation and marketing company, where I’m sure I’ve enjoyed working with the people more than the actual company or job itself. I made my mark there with my client portfolio and then the client hired me. After almost eight years of pharmaceutical marketing complete with massive layoffs year upon year, and bureaucracy, something had to finally give. So it was without hesitation I put my hand up to be let go during the latest round of layoffs.

This decision coincided shortly after my former spouse’s acceptance of a lucrative position in Australia; an opportunity he would never have had for his age and stage in his career in the U.S.. This also served as an excellent opportunity to raise our two small girls in a different culture and as part of our five year plan, gain citizenship for us all to expand our opportunities.

The job opportunities for an American, even in Australia with permanent residency have been few, at least those that match my skills coming from a bigger pond. However, the beauty of Australia is the “fair go” attitude, where everyone can just go for it and give it a shot. So that’s what I did, and extended my genealogy services business and started a clothing business where I could work from home and have flexible hours, to remain the nurturer of the family. Little did I realise that it would become so much more. I’ve had the amazing opportunity to lift and be lifted by incredible women across Australia. These women have become my tribe.

Australia has become my country. And in several a reflective moment, my surroundings and experiences here transport me back to the 315 of my youth. My neighbours are Filipino, Armenian, Vietnamese, Maltese, and Greek now (with a sprinkling of Aussies and Americans), and all just trying to do good work, and be happy.

Since I’ve adopted this country or it’s adopted me (still working through my application for citizenship), I’ve realised that following an internal compass leads to happiness in all ways; work and life. Coming to Australia hopeful for worldly opportunities, and starting a business to see where it led, ignited new passions, and brought new friends who I didn’t know I would come to rely so heavily upon as I battled breast cancer, a marriage breakdown, and a child custody battle. And while fighting so hard for what I believed in, and for my health, I even allowed a small opening to the chance of finding love, and I did.

Following that internal compass means facing challenges head on too, and remaining steadfast to what fulfils you. And for me apparently, the happiness compass was always pointing South.