I knew one day that I would have a time come where I was physically unable to work a standard workday & still take care of myself. I had tried preparing myself for that in the back of my mind as I had for other things, like oxygen & potential transplant. I always felt though it was going to be on my time & my say, not the diseases. Obviously, sometimes things don’t work out according to plan.
For me, the hardest parts of the lung transplant evaluation & my follow-up appointment (outside that blasted heart cath), were some of the discussions surrounding financial decisions, work, & social work aspects. I felt extremely vulnerable & weak in these areas because research & treatments, medicines, & things like oxygen don’t solve these problems. Internal examination (soul-searching) does.
In May, when I met with HUP shortly before my birthday (just to update them on my latest changes), I was not feeling quite as sick as I do now. In fact, I was a little bit surprised they suggested the evaluation because I was only on oxygen for exercise at that time.
I had a few summer trips planned to see friends & family I had not seen in ages & to take a break from the grind. I didn’t fight it, but scheduled the evaluation for when I did so I could enjoy these experiences without having to deal with that as a distraction or dark cloud. I had come up with a plan to at least discuss the subject of work after the evaluation to see where things stood. Until then, I felt confident I could keep going. But try as we may, we can’t always control things that happen in life.
In mid-July I went into work. I was humming along with the day just fine, when I became progressively shorter of breath. At first, (since it was humid) I checked my oxygen levels but didn’t think much of it until I knew clearly something was wrong.
Since I’d had lung collapses at a previous job before, I just strategized in my head quickly & objectively. I remained calm, & tried in my mind to think of a strategy that would drive home the serious nature of this but get me the help I needed, but avoid hysterics for anyone. I am lucky to have a supportive employer & workplace. They responded quickly & with caring, & upon my own request, as discreetly as possible to help address my issues. Little did I know, that was the end of my career; at least for now.
At first, I was upset. Months before, after almost 3 years of starting over & reinventing myself in a new sector, I received an internal promotion. It really looked like that after two previous lay-offs, many hybrid jobs I enjoyed but but had professional issues & politics that sometimes were tough to swallow; as well as one huge mis-step, I was back where I wanted to be. Suddenly, I felt that security blanket I had worked so hard to rebuild, had just been ripped out from under my feet. It was hard fall.
This time, I took a different approach to dealing with it. Instead of putting career & making a living first, I had heart-to-hearts with my doctors, family & friends, as well as my body. I broke down at my evaluation & follow-up a few times, and thankfully my caregiver is a true friend (stood by me in good & bad times for 15 years and counting) & good listener because I think due to the rawness of the experience, there were a few key points I missed. Because I was so emotionally raw, I’m glad she re-iterated them for me later because I missed registering them completely. I do not & didn’t perceive myself as a failure or let down because this happened. Nor did or does anyone else. For once, I put my health ahead of my career & made an executive decision in my own best interest.
It won’t be easy of course, but I know this is the right course of action for me now. Other women with LAM had told me I’d know when the time was right for several things when & if they happened & they didn’t just mean oxygen or transplant. When I stopped looking at papers, misguided notions to shield & hold back, & untrue fears of being a burden, the answer became clear. It’s not that I don’t want to work, I just physically can’t right now. It took a lot for me to admit, but in the end it’s the truth. Yet, I am letting go & it’s easier than I had thought it might be.
I now can clearly focus on gearing up for transplant listing & making decisions with a clear head & minimal distraction & stress. If I have a bad day, I don’t have to feel I have to exacerbate that by putting in a half or full day with a stoic face in a misguided attempt to prove my value professionally or personally.
I am relieved that I can spend this time & this wait time focusing on meeting this challenge head on, but finding other ways to be productive that because I spent so much time & energy focusing on “keeping pace” and “proving myself” that I had time for little else at the end of the day & that included time to take care of myself sometimes. Making this choice, while difficult, allows me to budget my energy more flexibly & use it when I have it.
I excelled at many of my jobs past & present because I valued people & invested time in building & maintaining relationships. But in those attempts to keep my diseases as “invisible” as I could in the workplace because I wanted to be seen as a successful professional with talents & gifts, (just like anyone – healthy or not – wants to be perceived), I made sacrifices in my personal life that came with a steep price tag.
There were times when many supportive people may have been inadvertently pushed aside or neglected because I was investing all my remaining energy into one thing & this one thing only. This came to the detriment of everyone, including myself. But as the saying goes, it’s never too late to start over.
I realize I am taking a personal risk by putting this subject out there, but I am doing it for people with terminal, rare, chronic, catastrophic or any number of illnesses (& their combinations) who may be nearing that moment or in that position now. They could be having an internal battle about the “right or wrong” in this situation or what the “correct answer” is. The answer is there is none. The true answer is for once, be selfish, & arrive at your truth for yourself. You are worth it, and owe yourself that much. Your career is important, but like your disease it isn’t solely who you are. Taking a break, leave, or disability is not slacking off, laziness, or cowardice.
In my case, even in the face of severe health challenges before, I have always bounced back. I trust, that even if it takes longer, ultimately I will with this experience too. But I intend to be a better person for it & to use this time away to not only take care of myself in order to meet a huge personal & medical challenge; but also to learn & grow at my own pace which is not something I’ve had the freedom to do in a very long time.