Rachel Goldman and her husband, Geoff McLennan. (photo by Avi Dhillon)
Rachel Goldman is this year’s Courage to Come Back Award winner in the medical category. She couldn’t be there in person at the Vancouver Convention Centre June 9, but she did accept the honour virtually.
After introducing herself, Goldman said, “Forty months. Forty months! That’s 1,216 days or 29,200 hours. That’s the total amount of time I have spent secluded from the world, due to COVID. Can you even imagine? So, here I am, speaking before 1,700 of you, sharing my story. It’s a surreal and humbling experience, but one that I am striving to embrace with courage and gratitude.”
Goldman explained what it has been like to have been born with CVID, common variable immune deficiency.
“For 40 years, I have caught and recovered from thousands of illnesses – lived through years of isolation and endured the roller coaster that is chronic illness,” she said.
“A common cold is never just a cold. It’s a sinus infection that leads to intravenous antibiotics. It’s a kidney infection that leads to weeks or months in an isolated hospital room. It’s my body triggering anaphylaxis to the antibodies being infused into me. Challenging? Absolutely.
“Not being able to be with you tonight to receive this amazing award in person is just one more of these challenges. I have my incredible father [Paul Goldman] there to accept this award on my behalf. Now, due to his attendance in my place, we will have to stay apart for at least 72 hours in hopes of minimizing my infection risk.
“Life altering? Most definitely,” she said.
“What it hasn’t done is stopped me from doing the best I can to live my life within the realm of what I can make possible, not what seems impossible.”
Goldman and her husband, Geoff McLennan, live in New Westminster and have two young children. A typical day for her starts at 6 a.m. to get their kids ready to go to Vancouver Talmud Torah.
“Once they leave, I am pretty exhausted, so I have to go back to bed and lie down for a couple hours,” she told the Independent. “I try to get outside every day and go for walks around our neighbourhood. With the weather becoming nicer, sometimes I will see a friend very distanced outside on our patio. I get my kids’ stuff ready for the next day for school … try to exercise and rest. I often write and usually have lots of doctors’ appointments, for the most part, over the phone or via Zoom. Then I get ready for my kids to come home. We try to have a normal evening of homework, dinner, bedtime and then time with my husband. Then rest again.”
That’s if she’s feeling OK. “If I am unwell,” she said, “then antibiotics and the meds I have to take to ensure I don’t have an allergic reaction to the meds keeps me mostly in bed. The meds make me feel very ill.
“If the infection is severe, then the antibiotics will require hospitalization, either inpatient or day treatment, to be delivered intravenously through a PICC [peripherally inserted central catheter] line.
“In terms of treatment,” she said, “I give myself weekly subcutaneous intravenous immunoglobulin infusions, which I infuse into my stomach through four needles.”
Because of her health, Goldman, a sports radio and television producer, had to stop working in 2017. She also has had to adapt how she volunteers at VTT, something she loved doing in-person. Unable to go into the school anymore, she said, “I have spent a lot of time volunteering virtually and helping out at home. I think I have become a master at cutting out projects for the school.
“Our Jewish community has been integral to our family,” she said. “Our children’s school has been the one constant in their life when everything else has been very chaotic. We travel 45 minutes each direction every day to bring our kids into Vancouver to attend VTT. We are eternally grateful for the love, support and kindness that the Vancouver Jewish community and Vancouver Talmud Torah has shown our family. They have lifted us up when things couldn’t have been more difficult. In turn, my kids could not feel safer, more well-loved and more connected with the Vancouver Jewish community.”
Goldman is a lifetime member of CHW, formerly known as Canadian Hadassah-WIZO, and has been a supporter of Jewish Federation of Greater Vancouver’s Choices event. In her younger days, she attended VTT and went through the entire Young Judaea summer camp system.
Her parents, Paul and Claudia Goldman, are also involved in the local and national Jewish communities. Her mother has been a volunteer with CHW for four decades, in many capacities, including becoming a national president and its lead representative internationally. Her father has served on synagogue boards and as a member of the Federation task force that led to the establishment of the Richmond Jewish Day School; as well, he has been involved with the Centre for Israel and Jewish Affairs and its predecessor, the Canada-Israel Committee, including as a member of CIJA’s national board.
During the pandemic, said Rachel Goldman, “The only way I could maintain close contact with my parents and my extended family was for them to limit their own activities in compliance with my specialist’s immunological protocols in order to protect me from potential infection. Those precautions are only now being partially loosened by my specialists.
“I had to home-school my two kids for 22 months during the pandemic as per my medical team’s instructions,” she said. “The kids only returned to full in-person schooling in March of 2022.
“If anyone goes into a high-risk environment or is exposed to anyone with COVID, then there is an isolation period of at least 72 hours, as has happened since the gala.
“I am still not able to attend anything at my kids’ school, their birthday parties, dance recitals, etc., any situation that occurs indoors,” she said. “Also, I am not able to travel via commercial airlines currently, which is very difficult since my sister [Naomi] and her family made aliyah eight years ago.”
Goldman wears a mask anytime she leaves her home, which is rarely, unless she is outside with her kids.
“If anyone in the house is sick, masks go on and I am double-masked,” she said. “If anyone is COVID positive, as happened in the last week, I have to leave the house for an extended period of time and we will have to isolate. I have not been inside in public since the beginning of the pandemic outside of medical appointments. I am just starting to have very distanced visits with a few friends now that the weather is getting better. Outside is the best and safest place for me.”
Her immediate family only recently started to take their masks off and, if they go into crowded places, they continue to mask.
Goldman has been to Israel twice for treatment, most recently in January 2020, after two years of constant hospitalizations for infections that stemmed from a sinus surgery she had in the hope of reducing infections. She said her medical team concluded “that the complexity of my condition required highly specialized expertise to determine a plan for continuing treatment, but none was available in Canada…. I conducted an intensive investigation for the relevant expertise, both in the U.S. and internationally, and determined that my best choice was Jerusalem’s Hadassah Hospital. I chose Hadassah because of its reputation as one of the world’s best research hospitals and, in particular, its multidisciplinary approach to diagnosis and treatment.”
Unfortunately, the medical tests – including many not typically available in Canada, as well as a complete set of genome sequencing and genetic testing – were interrupted by COVID. Goldman was urged to return home immediately. “At the time, they did not divulge why but, as time progressed, it became clear that the reason was due to the start of the COVID-19 pandemic,” she said.
Next steps for Goldman would involve establishing a new baseline. Because her current treatment includes the introduction of immunoglobulins extracted from the blood cells of others to boost her immune system, she said many of the tests that look at antibodies give false readings, as they aren’t interpreting her own system. “As a result,” she said, “it will be necessary to take me off all medications in a closely monitored hospital setting to be able to zero in on precisely what is going on with my immune system, in order to determine the best course of treatment going forward.”
The risk of doing this during COVID – and an increase in other respiratory diseases being treated in hospitals – has been too high and Goldman’s medical team is not comfortable with her flying on a commercial flight.
“I am now in the process of working towards re-setting a timetable with Hadassah to continue the process that was interrupted in 2020,” she said. “The logistics are complicated, but I am hopeful that I’ll have some clarity on that very soon so I can restart this process in the hopes of regaining some of my life and freedom back.”
It had been five years that Goldman’s aunt had been wanting to nominate Goldman for a Courage to Come Back Award.
“Finally, while hospitalized over the winter holidays, I agreed,” said Goldman. “I got the call from [chair] Lorne Segal and the Courage to Come Back Awards about winning a few months later … right before my kids’ spring break. I was shocked at first because this was the first time I had ever shared anything about my illness publicly. Even people closest to me didn’t really know the details and extent of my health condition.
“I didn’t realize that the way in which I have dealt with my health condition was something to be celebrated. Once I started thinking about it some more, I was truly humbled and very grateful to be recognized. I realized that this process, for me, was really about giving me a voice and the ability to hopefully help and inspire others with complex chronic medical conditions who are suffering in silence.
“By getting my voice back, it has allowed me to do more than just survive,” she said. “I decided that courage is absolutely something to be celebrated. I want to show my kids that, despite all of the obstacles being thrown at me and our family, we can rise above it all and have a beautiful life.”