My Invisible Disability

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

Change The Phrase, Change The Date

12 Mar 2021

A year ago yesterday, my children and I became Australian citizens. US born, we are truly being raised in Australia, all of us. A year ago tomorrow, I took my kids out of school in advance of the advancing pandemic. I’ve been quite reflective of this time, listening to a mix of Midnight Oil a la Amazon music as I type. It will be our first concert since we went into lockdown.

As I listen, my heart stirs with memories of the past. I was a bit more of an activist as a younger me; I was one of the few in my small, country high school who was listening to the likes of Midnight Oil, R.E.M., Elvis Costello, pulled in by the music but staying for the lyrical lessons. Those songs, over 25 years ago are as relevant today, politics, climate, war, racism, corporate greed, guns, and what have we learned? Are we better off now, or did it take Mother Nature stepping in to save herself, so maybe, just maybe, we would learn to save ourselves?

Memory lane conjures up moments when I was in grade school in Utica, New York, insulated by my white privilege (for not knowing otherwise), a friend to all, no matter what country or colour we were made of. High school in a small town, was less of a melting pot, and more close-minded. I craved being out in the world, including studying French, yet had to settle for my time in Rotary Club where I got to meet foreign exchange students, who became my teachers and friends, more than I was gaining in the classroom. I was also a member of Greenpeace, Amnesty International (with dreams of being president of the organisation when I “grew up”, PETA, and even became a vegetarian, which lasted for six years until I realised it wasn’t sustainable for me health wise. At my university, I joined Club International (a group mostly comprised of foreign students) and eventually succeeded my graduating Nigerian friend as president. This worldly view I was acquiring would translate to advocacy for the voiceless, oppressed; human or creature. My motivation was always putting myself in someone else’s shoes or fins, wondering how they would feel to be victims of injustice, discrimination, violence, poverty, environmental toxins, inequity.

It wasn’t until I was much older, my thirties perhaps, and I don’t recall the exact moment it happened, but the phrase “Treat people how you’d want to be treated.” just stopped making sense. I thought I was doing my part all my life to be inclusive, to learn from others, take everyone at face value, not by the colour of their face, treat people with respect, and on equal footing. It was then I realised that all that was well intended, but clearly treating people how I wanted to be treated, wasn’t working out for them. And warped by my own white privilege, I couldn’t understand why. As open minded and evolved as I believed myself to be, even into my corporate years, I still never understood affirmative action quotas.

A pivotal moment, I will confess, was not me at my finest, but I believed I was the best qualified candidate on my team to be the lead of the team, and was distraught when my colleague and friend, also a person of colour, became my manager. I honestly don’t know what went on behind the scenes of the decision or even if this was AA in action, but several coworkers told me the company had to maintain quotas. So I struggled with why the hiring managers wouldn’t treat us the same and promote the most qualified for the job. But guess what, we have to learn at some point, and often painfully to our whiteness, what perpetuates the institutionalised racism that exists in most businesses and governments. And if she’s reading this, I want her to know I am sorry for my behaviour, and I love and have the ultimate respect for her (and she was a great manager!).

A flash forward and full circle in Australia, where I live now. I live in a community of diversity, the first generation kind that I grew up with in Utica. Different country, same problems, yet the response to what ails us and the planet, while not always perfect, is different. Mass shooting: turned in guns. Climate change: solar panels, wind turbines, and battery farms. Racism: ongoing reconciliation and advocacy for changing the date of Australia Day, at the very least. Coronavirus: mask wearing and lockdowns. These things all boil down to respect, for each other and our way of life.

So next weekend, when I take my kids to the Midnight Oil concert to relive my musical youth and renew life lessons, it’s most importantly to attend an event in support and celebration of our First Nations people. And my kids will take my phrase with them on their journey through life, “Treat people how they’d want to be treated.” Maybe if we only thought and did this simple thing, we’d be a better people, and planet.

Can’t Kondo Your Way Out of COVID, with Kids

When the first lockdown was looming here in Melbourne, Australia, I played it safe and took my two young girls out of school a week before their school holidays (I did again this next term too). The day was 13 March, two days after we became Australian citizens in a ceremony where you didn’t get to shake the Mayor’s hand and we certainly didn’t stick around to share the buffet of Australian favourites like lamingtons and Vegemite; we didn’t even go near the tempting fresh fruit platter. I registered to vote and immediately grabbed for my hand sanitiser after using the communal pen. There were only 13 cases of COVID-19 reported that day in all of our state of Victoria, and I was taking no chances. Instead of funny faces thrown at all the cute babies, I was wondering why the parents were allowing them to run rampant with mini Australian flags dangling from their mouths.

That day was life-changing, my girls and I were now Australian citizens. The moment was a rush of many emotions, but it meant foremost, I was officially a life member of the greater community and country that I have lived in for over 5 years, where I raised my children, was diagnosed with, treated for, and where I overcame breast cancer, while running my online clothing business out of my home, and going through an international custody battle, and subsequent divorce. That’s got to be the longest run on sentence of my life. Australia has always been there for me. Amazing and free healthcare, low-cost child care, but most of all mateship. I’ve experienced nothing like it in my life, where friends, customers, friends in the virtual world rally for you when you need it most. I had this in my Aussie tribe through all things, past and present.

And, lockdown, for most of us. And now Lockdown number 2 here in Victoria (273 cases today). But we’ve personally already been doing the “hard yards” as they say here in ‘Straya. We’ve cut out unnecessary everything, except for a 15 minute car trip to hike for an hour in a National Park. Otherwise, grocery deliveries, takeaway delivered, we’ve made and canceled many plans and stayed here in our cave, with neighbourhood walks.

My internet lifeline shows me so many stories of getting organised and donations made to charities with closed doors. Here, I’ve placed delivery orders of furniture from IKEA to get organised, bought a new work printer (delivered) from Costco, and yet the only thing I am actually Kondo-ed about is making sure the next pet food delivery and litter trays, and regular Woolies orders happen. We just can’t run out of milk and bread, or canned diced tomatoes. Thankfully we subscribe to Who Gives a Crap toilet paper or we’d really be up Shit’s Creek (sp?! Haha). What does one do though in quarantine after Kondo-ing? I can tell you our house is not a reflection of the productive side of quarantine, except for my partner who manages to accomplish a gazillion things, while fixing everything, all.day.long.

I am still running my business, which has seen a COVID uptick, so all small business subsidies are going to marketing and growing the business, which means 60+ hours a week by my sole employee, >me<. And as we enter into the next school term, which today was announced as remote, I cringe a little. The last time was ok, but it was a lot of time away from my work to ensure my youngest was getting through her lessons. If that’s the worst to expect as we do this online thing again, well, we just have to do it. And the kids LOVE IT.

My oldest has survived lockdown with her own internet lifeline, her best friend and classmate. They Zoom through online school lessons, provide emotional and comic relief to each other, and make time pass. And isn’t that what we are all doing? Passing time, and doing our best to deal with each day. And let’s not omit Roblox, which has been emotional glue for my girls and their friends, even those that live a stone’s throw from our house.

The treasures from being together 24/7 are the opportunities to see the kids be creative, even taking their acting lessons online, original impromptu rap-offs in the kitchen a la Hamilton (we watched day 1 thank you Disney+, and I listen to the soundtrack now as I type), living room yoga, and guitar lessons when school is in session. My partner and I have brought work and responsibility into their lives. Consequences are instilled in things meant to be earned or lost. Time on Roblox, device time, TV time, all earned by household contributions. And arguments easily settled by talking through our feelings, and lots of hugs. I have a partner now who teaches my kids new things, comforts them, loves them. They go to both of us asking for chores to do, to earn their internet time. So we KONDO-ED the KIDS!

They have routines, and rituals they go through knowing they are earning things, and we are all happier and calmer for it. And when inequities abound, as they do amongst siblings, we discuss calmly and caring. This has contributed to the general sense of well-being when they may be bored, listless, full of energy. And we go on walks around our neighbourhood or take a dip in the swim spa. This time in lockdown has not been for nought. These kids who would normally be doing many things are contributing, earning, learning, caring and thriving in lockdown. They have their lifelines, psychologist as needed, have fun and lots of love. And as Aussies do, we will band together and get through this new wave of COVID in our own Kondo fashion. There’s nowhere else I’d rather be to ride this wave.

Healing Waters

I never take time for myself. Never is never a good word, but I can’t remember the last time I forced myself into a getaway just pour moi. I am a single mother to two young girls, and I always holiday with them, always make plans with them in mind, never hire a babysitter (now this is the serious truth), and just don’t fork over the cash on myself. I enjoy experiencing things with them, so making plans without them while they were with their father, was foreign to me. I decided to squirrel (my Americanism) myself away in a cosy villa, in the winter. My only prerequisite was a spa bathtub with a view. Got it, photographed it, but when you get to the Daylesford region of Victoria, Australia, and have only 2 nights to yourself, there are other beckoning baths.

Day 1: I apparently also had a private outdoor spa that I didn’t realise when I booked. I just booked the trip and decided to just go with the flow when I arrived. I love off the beaten path places, and my final destination was near the end of a single-lane country road, cresting hills with zero ability/visibility to see if anything was coming toward me, and a welcoming posse of kangaroos to greet me. Country kangaroos seem so much bigger than the kind I see at home, when I am lucky enough.

It was raining, like 100% rain in the forecast. Rain is my middle name, so it’s unlike me to balk at rain when I’m in it, to the chagrin of others. I walked the grounds, took videos of soggy kangaroos, and got to know the place. First order of business, build a fire. Can’t remember the last time I did that either. I’m a New Yorker, so those skills are inherent, no matter where you go. Aren’t they?

I’d stopped at Koukla in Daylesford for lunch prior to my arrival. Had beef ragout with winter vegetables, linguini, and topped with parmesan. Perfect soul-warming meal in the cold and downpour. I liked the place so much and knew I was hunkering down for the night, so grabbed a rosemary and garlic pizza to take for dinner. Back to the villa…

Once I was settled, and discovered the private hot tub, I proceeded to enjoy it. How amazing to be outdoors with cold rain pouring down and a view with kangaroos. After the lovely soak, the sun set and well, it started to feel like camping when you go to sleep with the sun and wake with it. I think I was asleep by 7pm? Is that right?? Awake at 2am to kangaroo thumping on the deck.

Day 2: My lovely hosts provided a gorgeous breakfast for me to cook, and I brought my French press as that is my preferred method for coffee. From there, I was off to my spa appointment at The Mineral Spa in Hepburn Springs. I had the early bird special for the baths and had the spa to myself. How good is that? Their spas are 38 degrees Celsius and outdoors so I watched the biggest cockatoos (country cockatoos!) dine off the local trees, awash with cold rain and bubbling heat. My mind was erased. I also indulged? in my first ever cold plunge pool, because why would I do that when I was so happy warm? I did it though, thinking of all of the self-help gurus who say it’s good for you. OK, maybe it was good for me, I was awakened for sure!

When it was time for my Detox and Float treatment, I’d no idea how much it would “work”. This is what happened; I was exfoliated with a salt scrub and oil, from there I had a full body mud treatment. Then, I was wrapped in a cocoon of sheets and a weighted enclosure, and finally, I was submerged in a floating tank. All thoughts, stresses, feelings, coursed though my body, and yet were weightless. I gave zero weight to the things that bothered me the most. I remembered all the stresses running through my brain, but my body was having none of it. It was an “I got this.” feeling from my body. I told my therapist after the treatment that it was like going through all of the stressful experiences, but my body being totally relaxed to it, and that I needed to focus on that in times of distress. This is what I took away and need to do.

As if the spa experience wasn’t enough on its own, I devised the plan to go to Wombat Hill botanical gardens and then swing by Ruben’s for lunch takeaway. It was perfect to a sorta rainy day, and me wanting to hunker down.

My last night in the bush was again a sleepless night with the wildlife cavorting at all hours, but it kept me present, and the sounds kept me grounded; exactly what I was looking for, right?

The next morning I was up early and on a mission besides washing up all of the dishes before I checked out. My mission was to use that spa tub with a view that I just had to have when I booked. And I did. Bliss.

Scarves In Solidarity

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

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.

Judging A Family Tree By Its Cover

ancestrysteps

Out of my blog hiatus I come to tackle an important topic that I’ve seen on many message boards. My hiatus and this topic are closely entwined. Hopefully this reaches many people and changes their hearts about why people do DNA testing on Ancestry.com and then either don’t connect their results to a family tree, have very few people on their tree, or keep their trees private.

My hiatus was the outcome of getting a DNA test back on a family member that turned out to be half related to me. The detective in me focused every bit of spare time and effort to figuring out this mystery; I’m still in the midst of it.

I began with a shared DNA match to this family member and then viewed that person’s tree, created a mirror tree from that info, and made it a private tree. Then I found another match…

View original post 438 more words

Choosing Family

We’ve all heard the saying, “You can’t choose your family.” I said this very statement while discussing family outcasts in our family tree with a new-found cousin. Good, bad or ugly, it seems we are just born, raised, and no matter what, we are stuck with the family we have. Serendipity played quite a hand to me over this past week, as did the U.S. election, which made me undertake a full emotional review of what or whom family really is.

Over the last two months, I have been working with an AncestryDNA match of mine at 32cM who was listed as a 4th cousin. It was on my paternal side and because I am estranged from that side of the family, I haven’t really pursued my matches on that side. What made this person unique is that he was related to me and didn’t know his birth parents, he was chosen by his adoptive parents.

Using his DNA match results, I immediately found high matches to him, at 1st cousin range as well as an Aunt. I branched out on my tree and added these new family members. Scouring old newspapers and obituaries, I was able to pinpoint who I thought could be his mom. As luck would have it, I found her. I also found a half-sister for my new-found cousin. I had worked day and night to piece together how they belonged to each other, and how they belonged on my tree. I spoke with his half sister over Skype and marveled at how familiar she looked to me and how much there was a family resemblance on that side.

What really struck me was how open this new sister’s heart was, as well as that of her new-found half-brother. They’ve now spoken to each other and need to figure out how to move forward in each other’s lives, as real blood family. He chose me, an unknown cousin, to help him find his mother, who made the very difficult choice of letting someone else be the family who raised him. Now, they’ve chosen to be part of each other’s lives and mine. As a genealogist, this is beyond thrilling and quite a highlight of my passionate work!

In the span of a week, I went from the elation of finding a person’s birth family to hitting rock bottom over the choice in the U.S. election outcome. I’ve remained professional and kept any discussion of politics off of my professional presence in social media for the entire election.

For most of my adult work life, I have sat side by side with a widely diverse group of colleagues. We’ve solved problems on the job together, celebrated weddings, babies and birthdays, traveled together, encouraged each other through tough times, and socialized outside of work. When you spend that amount of time with people, you really get to know them, experience them, and appreciate them for who they are, where they come from, and what’s important and of value to them. You see how they treat others, who they associate with, what they stand up for, and what they stand against. If I could choose family, many people in this group would be leaves on my tree.

What I have witnessed on both sides of this moment in U.S. history is how the divide is so great, even real family can’t build a bridge. It’s during the most trying of times, that you see who’s got your back, and who doesn’t. I have chosen to be a safe haven for chosen family and other alienated members of society, and made the easy choice to let some blood family members go. If beyond the likes on a Facebook post, there’s no real connection, no dialogue, no attempt, no common values, and instead a chosen side with privilege and/or ignorance, I choose to be on the side of history that protects all members of our global family.

Virtual Gramma – Look Her In The iPAD!

As a genealogist, I come across many family migration stories. Several generations ago, many people left everything and everyone behind for a new life; often to never communicate again.

Women sometimes left small children behind, men left entire families, with the intent to one day bring them over to reunite with him. There are many happy endings to these journeys; there are also relatives who were left behind posting in newspapers, searching for loved ones who they hoped made it to the promise land. The heartbreak that occurred would be insurmountable I imagine, regardless of how tough and brave our ancestors were.

If they did connect again, it was through the postal service and what we call “snail mail” now. And the letters traveled on ships and took what must have seemed a lifetime to reach home. And then traveled by plane. I’ll spare the history lesson right there; it took a long time by todays standards. I myself recall buying special air mail paper to correspond with friends who left for Europe after college.

Now for my own family’s migration story which I never could have foreseen. It’s been a year and a half since our small family including three pets (two cats and a dog) boarded a plane for Australia. This decision was a big one, especially in the sense of being an only child and taking the only grandchildren away from their Gramma in the States. She was devasted when my husband had a job offer in Pittsburgh, but this? We ripped her heart out, but we took it with us.

Gramma is with us virtually now. She’s on Facebook and I am a super poster with her and the rest of family and friends we left behind in mind. We FaceTime on a near daily basis. She joins us for breakfast, sometimes lunch, occasionally dinner (during daylight savings) because she’s sleeping on her side of the world. She joined us just today when I brought my eldest daughter to lunch. Good thing I have a great data plan on my iPhone! She is there with us at swim lessons, our hotel stay this past weekend, and we are there with her when she travels to Colorado to see her sister, and when she sings with the band on a night out. Gramma even gets captured in family photos while on the iPad.

Things you hear around our house:

“Look her in the iPad when she’s talking to you!”

“Take Gramma with you upstairs to watch you play.”

“Don’t moon Gramma and Papa!”

“Talk to Gramma first and then you can play on the iPad!”

Gramma has watched them grow in height and vocabulary and she hears the ruckus of us trying to get them ready and out the door for school on time. She’s there for the yelling, the tears, the injuries (although she was spared of the head getting cracked open on a rock because we were FaceTimeing with her Colorado sister at the time!!) and the living room dancing, plays, and songs.

When we ask our kids which country they like best to live in, the lightning-fast response is the U.S.. Why? Because Gramma and Papa are there. They don’t mention other reasons like friends or places they miss (no offense folks!). And it’s not just because they are family and visited for 2 weeks last year. It’s because they are a constant in their lives and share stories every day. Maybe it’s also the care packages…

Technology is our lifeline and I don’t use that term lightly. It is the bridge between us and family in the States. Our own iPads and iPhones, and all of our Apple products really, are worth every pretty penny. In pennies-per-use and the family glue as a result, these devices pay for themselves again and again. The best thing is being there and we will see Gramma when we travel to the States next month!

No doubt you have your own virtual stories, so feel free to share!

Trans-forming the Family Tree

You’ve finally gotten your 2nd, 3rd, maybe even 4th generation family tree completed, because everyone is currently living or you’ve been there for someone’s death, and ordered that massive canvas wall print to give as a gift to everyone during the holidays.

Then you get a Facebook friend request from someone who shares a family surname and you figure, oh it’s just a distant cousin by marriage. Then you click on the person’s page. There’s something very recognizable about the person’s picture, although you think she’s a celebrity, so why is she contacting you?

And then, it hits you like a ton of bricks, but oddly at the same time as if those bricks then become light bulbs, and everything made sense… Cousin Brian is now cousin Bree.

This is precisely how I and several other family members were introduced to our transgender (male to female) cousin.

The last time I saw my cousin as Brian, it was almost 2 years ago. Before that, I believe it was 1993 at a family reunion. The time in between was painted like this is my mind: Brian was a successful, intelligent, and dedicated businessman, had a wonderful family with 2 kids, and enjoyed time with friends. I always found him to be off the radar though, which I assumed was because he was tireless in his business as CEO and providing for his family. Our paths sometimes crossed through email and centered on our family’s history. We are second cousins; our grandmothers were sisters. He had started documenting the tree long before I had, and in collaboration with my mom. Once I got the genealogy bug, we stayed in touch on things as they related to our family.

We had such a nice visit 2 years ago when Brian was in my neck of the woods at a conference. My mom traveled up to see him too. It was a warm, fun visit, full of laughter. I remember when we parted; I wished I had known him better as I was growing up because I really enjoyed him as a person.

Today, it’s as if I’ve gained the relationship I had longed for then. Bree is the same sweet soul inside, and is absolutely on the radar now with a very active Facebook page and social life to fuel it. She’s also sold her former company and has more time to spend catching up now as well as documenting her physical transformation from male to female. We had a near 4-hour marathon conversation shortly after I accepted that friend request. I already love my new and improved cousin!

So now that the family has met Bree, either in person or virtually, there’s no difference to her being an important part of our family. This post is not to be filled with the particulars of our family journey or hers, but to create a discussion about how to respectfully address these new members on our trees. We need to because it is so relevant to genealogy, family history, and prevalent in our society.

If you don’t yet know of a transgender relative, it won’t be long before you’ll be making updates to your tree! Some prevalence data might surprise you.

http://www.gendercentre.org.au/resources/polare-archive/archived-articles/how-many-of-us-are-there.htm

As a genealogist, I want to get this right and respectfully handle the update or entry of a transgender family member on the tree. I’ve seen random bits of input from many in genealogy forums, however it’s from the genealogist’s perspective, not the transgender person.

I’ve never heard that sharing this deeply physiological and emotional information with the world is an easy one. Many transgender people just want to “blend in” and not draw attention. Some are visible advocates for the population. And often when the transition is complete, it’s not a mere name change update on the family tree putting down “aka”, or “formerly known as” and picking the opposite gender silhouette.

This process isn’t frivolous or a trend and there is a wealth of thought and emotion that are entwined with the transition process, which in itself has varying degrees.

Transgender people have to go to great lengths just “to be me”. Birth certificate, social security, drivers license, passports, taxes, all require significant documentation to be changed and some states/countries do not allow it. If you’ve been married and changed your name, you already know the cumbersome process, now multiply it by 100.

Once the name change is complete, it becomes a “dead name” in the transgender mind. Just as families may feel the experience is like death, in losing the person you once knew, it’s also a right of passage for this new and true being to emerge. On public trees, transgender people want to be seen as who they are, not who they were.

This poses great challenges to us genealogists, as future generations won’t have the paper trail to follow while using the new name. It also becomes confusing on a tree as those who were/are married may appear as if in a homosexual relationship which is now commonplace in society. If they had children, it would be as if the children had two moms or dads.

Another challenge to getting this right is the limitations of the major family tree software companies and organizations. There’s no transgender option to choose. I dare say, there may never be. Two major players in this space, Ancestry.com and FamilySearch.org are Mormon-run. To get over this Granite Mountain sized hurdle, they would have to agree to accept transgender as an option.

Without delving further into the religious aspects of this, in the meantime we need to work around this to do our best to leave a breadcrumb trail in history from the person of today to the person who biologically arrived on this earth in the past. I don’t have the answers, but I’m hoping we can start the dialogue and gain ideas that truly transform the family tree.

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In the span of a week, I went from the elation of finding a person’s birth family to hitting rock bottom over the choice in the U.S. election outcome. I’ve remained professional and kept any discussion of politics off of my professional presence in social media for the entire election.

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