Moving past disappointment when life doesn’t go as planned
Hitting an unexpected roadblock while preparing to advocate on Capitol Hill
As John Lennon once sang, “Life is what happens to you while you’re busy making other plans.”
Well, life happened — again.
At the end of February, my wife, Jill, and I had planned to go to Capitol Hill in Washington, D.C., to lobby several congressmen as part of Rare Disease Week. Jill was anxious at the thought of going alone, so I took a day off from work to go with her. Anxiety is one symptom of her rare illness, Huntington’s disease (HD).
She spent several hours preparing for the trip. She researched the politicians whose offices we were visiting, trying to see if there was anything in their family medical histories that might make them more sympathetic to the plight of people suffering from HD.
She also did a deep dive into her family tree to figure out how many of her relatives have had the disease. She went back three generations and found, to the best of her knowledge, that the number was 17. This includes our daughter, Alexus, who was diagnosed with Huntington’s in 2019.
We also reached out by email to members of the Huntington’s Disease Society of America’s advocacy caucus to ask if there was anything legislative they wanted us to share while we were on Capitol Hill.
Lobbying our policymakers is an important part of American democracy, as we have the opportunity to encourage them to pass legislation, such as the HD Parity Act, that can help a particular community. The Bible puts it this way: “Ask, and ye shall receive.”
Except …
Life got in the way.
Accepting life’s setbacks
What Jill and I received were germs that made us both sick. Several days before we were supposed to go to D.C., she developed a sore throat, a pounding headache, and fatigue, and I had a hacking, persistent cough and fatigue.
My day off turned out to be a sick day. We were sad we couldn’t go, and, as it turned out, we couldn’t even participate in Rare Disease Week virtually because we hadn’t signed up for it, figuring we’d be there in person.
As disappointing as it was not to go, Jill’s attitude is one I always try to emulate. She accepts life for what it is: a roller coaster with ups and downs. Its twists and turns are what make life exciting.
Even though Rare Disease Week is over, she still plans to reach out to members of Congress to lobby on behalf of the HD community. For those with a rare illness, Rare Disease Week is sadly every week, and because of that, Jill will continue to advocate.
As more of her family members are diagnosed as gene-positive in the years ahead, Jill hopes they will be able to get the help they need and deserve, either through legislation or a cure.
Note: Huntington’s Disease 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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