That’s Me in the Corner, Losing My Ambition
We think our lives tend to follow a natural trajectory. Starting as totally dependent infants, we progress slowly toward independence as we mature. As adults, we discover and develop our skills and talents, then find our market or audience. We produce and perfect for years, probably have a setback, maybe take on a side interest or project along the way. Then, we relax and enjoy the fruits of our labor and the love and loyalty of friends and family.
That’s the theory anyway.
Reality check
Short bios of successful people depict them moving smoothly through those stages of life. In reality, they — and we — slog through all sorts of chaos and clutter along the way, as any book-length biography will demonstrate.
Healthy, energetic, and optimistic people call the obstacles or hurdles they encounter mere challenges to overcome. Ill, fatigued, or cynical people may consider them major detours or insurmountable roadblocks.
Since his diagnosis of atypical hemolytic uremic syndrome (aHUS), my husband and I sometimes fall into the latter category. His aHUS is a rare illness that cannot be overcome, only monitored and managed. Suddenly, the standard life stages are not necessarily predictable or guaranteed to us.
We are dealing with his limited energy and focus, a schedule littered with lab tests and doctor appointments, and the obligation of unanticipated medical bills. Any of these issues has the potential to get us stuck in a phase and to limit our options within it. Right now, we are mired in the productive era, but on a part-time basis with travel restrictions, we wonder if we ever will reach the reward of retirement.
Happily never after
We try to be grateful we have work and can do it. But we sense we are sliding backward as we pivot, and try to develop new skills and outlets for work that is less demanding. We are fearful one of us may descend into dependence if his condition worsens, or if I develop any health issues.
Fear is a great motivator, but it feels different now than it used to. In our youthful vigor, we hustled to make rent or land the next job. It was scary but aspirational, and the failures were fleeting. Now, we work hard to maintain the status quo and avoid personal or professional defeats, because they could be permanent.
Lately, it feels as if we are sidestepping nightmares rather than chasing dreams. Our world is smaller and time is shorter. Another monthly mortgage payment made, another week’s worth of pills organized into daily doses. Success is defined as avoiding foreclosure and hospitalization. This is no small feat, but neither is it the sort of accomplishment that inspires biographers.
Attitude of gratitude
We are coming to the realization that this may be as good as it gets. Our life is OK and even pretty good. But in order to enjoy it, we are going to have to learn to let go of ambition and embrace gratitude. I could go on, quoting everyone from philosophers to overachievers who have come to the same conclusion over the centuries. Meh. I would rather get on with enjoying my day, repeating my new mantra: That’s enough.
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Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.
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