Slowing down and taking stock of the positive things aHUS has given me
Being present in her children's lives tops the list for this columnist
Each week, I write this column because I love sharing my raw experiences while living with two rare diseases and various comorbidities. I usually discuss stressful issues associated with being an atypical hemolytic uremic syndrome (aHUS) patient. But today, I’m going to switch it up and talk about what I’ve gained from this disease.
It would be absurd for me to pretend there isn’t a bad side to living with a rare disease, whether it’s the physical ailments, organ damage, life-threatening attacks, medical symptoms, or financial issues. But despite my world being turned upside down in September 2020, when I almost died from my first aHUS attack, I’ve actually gained some things I never expected. I truly believe that things happen for a reason, and that every step of your journey — good or bad — is part of your story and shapes who you are.
Pumping the brakes
Time is the first thing I’ve gained. I now have more time with my children, more time to travel, more time to work on our new home, and more time with other family and friends. According to the Americans with Disabilities Act, I’m considered disabled due to lifetime maintenance therapy with eculizumab infusions, the side effects from this treatment, the symptoms of aHUS, and many other complications.
So for the first time in 24 years, I don’t have a job. Someone is actually telling me to sit down and rest. Regardless of whether or not I wanted it to happen this way, it looks like my body made the choice for me.
Getting sick and almost dying forced me to slow down. Before I got sick, I lived an active and busy life. I was working more than 40 hours a week at a new job, remodeling a home, and raising two young boys as a single parent. Money and finances had always been one of my primary concerns in life. All I did was go to work, go home, work on my house, and repeat.
The year I got sick, my oldest child was just starting kindergarten, and my youngest was starting pre-K. I had managed to convince my employers to let me switch to a part-time position that would allow me to home-school my boys, but I received a new job offer with a higher salary, and it was too tempting to turn down. I took the job and, as a result, I was failing miserably at home-schooling my oldest child.
As much as I hate to admit it, I wasn’t ever going to slow down. I knew my children needed me, but I rationalized working more as a way to make more money, which in turn would enrich my children’s lives. I wasn’t going to change until slowing down was my only option.
Being present
Now, for the first time in my children’s lives, I’m available for them. Not working means I can pick them up from school instead of leaving them in an after-school program and getting home after 6 p.m. Not working means we can actually be together and do fun things during holidays. Not working means I have time to cook healthy meals for them.
I’ve always wanted to quit work, take care of my children and home, cook, travel, and just live life. But I can’t imagine any other scenarios where quitting work was going to happen. My medical journey was the most arduous path to get what I wanted, but dare I say — it just might have been worth it.
I’ve also gained a new voice and a community. I never felt like I belonged anywhere until now. While others may have viewed me as a social person and an extrovert, it didn’t seem like I fit in anywhere.
The new connections I’m making in the aHUS world, and the broader rare disease world, are refreshing. I feel understood, supported, and valued. I’m meeting so many people who don’t expect or demand anything of me except that I be authentically me.
The value of bridging the gap between feeling alone with a rare disease and having the knowledge and support of an entire community is immeasurable. Feeling like I’m contributing to something much bigger than me is extraordinary.
God saw fit to tear me down to almost an empty shell of a human being to remove the things from my life that I apparently didn’t need. This journey is one I almost didn’t survive and still struggle with daily. But in exchange for that suffering, I’ve been granted a new life, and it feels like I’m walking on water.
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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