For those of you who might have missed our Rise Event, The Comeback, held on June 17th, I wanted to make sure you didn’t miss a chance to hear Yasmine’s story. When most of us think about family leave, we think about maternity leave and maybe later on, down the road, taking leave to take care of aging parents. It’s hard to fathom having to balance work and caretaking of a partner or spouse. That’s why this story is so important.
The only predictable thing about the unforeseen, is that you will never know when or how it will happen. One day in March 2015 my husband, (at that time my boyfriend, Luis) sustained a small cut – practically a scratch only, when working out at the gym. 48 hours later, with a raging fever, and with blood pressure so low he was on the cusp of fainting, he was admitted to the ICU. The initial diagnosis was septic shock, from an extreme infection that traveled through the minor cut on thigh and up towards his hips.
After eight days in the ICU they managed to stabilize him. He was moved to a regular room, and discharged a week later, with follow ups planned. We had a nurse doing home visits. Luis yo-yoed – and his condition deteriorated. Many things happened, too detailed and traumatic to describe; Luis was in and out of hospital between April-July, each time being taken by ambulance, in excruciating pain.
During these months we were told that Luis had multiple myeloma, which is cancer of the bone marrow, for which there is no cure. Your bone marrow is responsible for generating white blood cells – and because Luis’s was impacted, he had very little immunity. This is why in April when he sustained the small cut, he became ragingly sick literally with 50-50 chance of making it. It sounded so unbelievable, that we had to get a second opinion. And by the time we got that second opinion, Luis was completely immobile – bedridden – unable to even raise his head to swallow a gulp water. You would not believe that someone so athletic, who embraced the outdoors, who could easily have been a jujitsu champion, who had until then, just looked healthy, had been dealt these cards.
They began emergency chemotherapy on him, administered as an infusion. Even with chemo and radiation, Luis remained totally bedridden in the hospital for 3 1/2 weeks. He lost the ability to walk. And he spent the next three weeks in another section of the hospital where they gave him physical therapy. He came back home in August, spent most of September between the bed and a wheelchair, October with a walker, November with a cane, and December gradually walking unassisted.
The crazy thing about this whole experience is that there seemed to be no end in sight. You just don’t expect someone to go into the hospital one day and not get well within a reasonable or predictable amount of time. There was no way to anticipate or manage anything including the leave time from work, effectively – and I didn’t really have solid “comeback” from leave. During these months I was able to take off a week here and there, supplemented with a few interspersed days, but not a huge chunk of time all in one go. For me to file for a large amount of time off, I would have had to arrange it in well in advance and ensure that my work program was not within critical time frames during the year. But cancer doesn’t allow anyone to do that.
I work in a small unit of a large corporation. In my unit specific people are solely responsible for their own programs – and these programs are outward facing with deliverables that impact a huge number of staff. It was extremely hard, both physically and emotionally. But the following things were key in managing time, and had an impact on leave time:
Proximity: Although not entirely by design, the fact that we had a hospital that was close not only where we lived, but also to where I worked, was very key. Luis was at GW hospital for most of his treatment. So on the days when I simply had to go into work, I was within vicinity of the hospital, and this was key especially when important treatment decisions had to be made.
Support system when you cannot be everywhere: At each hospitalization, during the weeks when Luis was no longer in the ICU, I was sleeping at the hospital near him, in the reclining chair, six nights a week. I would sleep at home one night a week and do the laundry; on the remaining nights I would sleep at the hospital, go home in the morning at 7 AM, shower, be at work by 9 AM, work till 12.30 pm, dash to the hospital, dash back to work by 1.45 pm, work till 6.00 pm and then be back at the hospital for the night. And there was no knowing how long this would go on for.
It would not have been possible to sustain this without help. I used Task Rabbit to take care of certain errands. Yes, you pay, but you know that professionals are handling you stuff and it will be done right. Instacart to deliver groceries. When you have a few fallow minutes, conserve your energy – have the groceries delivered. You will feel relief. And if you have family and friends, gauge who can help the best, and ask them for specific things.
Codify, including my own to do list: This was imperative! Not only did I write out a million questions to ask the doctors, and also wrote out my own observations, but I also kept my work to-do list and just got through whatever I could in order to meet my deliverables. As a side note, one has to determine whether one is an emotional caregiver or a physical caregiver. It is impossible to do both – at least it’s impossible to do at the same time. But what one can do is, to determine which role you play, per situation that evolves. And when you are the physical caregiver, you literally have to put yourself in a zone of “practical-mind” over “emotional-mind” and just cope. Making lists helps with that tremendously.
As far as work goes, the takeaways I have for folks are:
- Know the rules of your organization, and figure out how to leverage them. Although flex time is something that is promoted, the reality is that certain meetings that only take place during regular work hours and collaboration with colleagues does not operate within your flex time requirements. So you have to actively manage which meetings you can attend remotely or in person, even if partially.
- Keep in touch with the office and with your supervisor(s). At first I did not tell the office what was going on – partly because I never thought that things would spiral so drastically, and partly because of my own notion of privacy. However, when it became clear that the situation was far more serious than anticipated, I informed my supervisor and my peers. This was important so they understood the gravity, and were open to flexibility.
- Produce something, anything. I worked extremely hard, and I produced work. It was not easy to do this at the hospital – there were always teams of doctors and nurses in and out of Luis’s room; and many times when they were not in the room, there were other things happening. But in snatches of minutes, I learned how to change gears, and produce work bit by bit. This was crucial – and keeping up and meeting deadlines was imperative.
Luis and I got married on February 29, 2016. In November of last year, he received a bone marrow transplant. He is still on chemo therapy and is expected to remain on this for the rest of his life.