November 14, 1997.
It was just eight days after my 23rd birthday when I received a diagnosis that would change the course of my life: Multiple Sclerosis.
Twenty-nine years ago today.
Sometimes I look back at that scared 23-year-old girl and struggle to believe she was me. I remember how little I knew about MS, how frightened I was, and how impossible it seemed to imagine my future.
If someone had told me what the next 29 years would bring, I am not sure I would have believed them.
MS has taken so very much from me.
Five years after my diagnosis, I lost my ability to walk. I have now spent more than 24 years using a powerchair. Independence looks different than I once imagined, and everyday activities require more assistance than I ever expected.
Some losses never show up on a medical chart.
My dad died without ever seeing me regain the ability to walk. My husband, Dan, has never known me as someone who walks. He does more than watch me live with this disease; he lives with his own version of this nightmare.
Dan also has MS.
Some days, that makes me angry. Other days, incredibly sad. Sometimes I wish more than anything that MS had never become part of our lives.
This is where things become incredibly complicated.
MS has also brought some pretty wonderful things into my life.
I have met incredible people (including Dan), become an advocate, and discovered things about myself I might never have known otherwise.
Together, Dan and I created A Couple Takes on MS, giving us a platform to share our experiences, connect with others, and hopefully make a difference.
I am blessed by so much of what I have gained, yet I am still so angry about what I have lost.
Both things are true, and I think that is something we do not talk about enough when discussing life with a chronic disease.
Gratitude does not erase grief. Finding happiness does not mean we have made peace with every loss. Encouraging others does not mean we do not struggle ourselves.
Twenty-nine years is a long time, and a lot has changed since my diagnosis in 1997.
There are better treatment options, a greater understanding of MS, and more resources for people living with the disease.
Oh, and the internet.
Seriously, can we take a moment to appreciate how much easier it is to find reliable information and connect with others today?
When I was diagnosed, finding credible information or connecting with someone who understood what I was experiencing could be difficult. Today, people can connect with the MS community from their living rooms, find support groups, share experiences, and discover they are not alone.
That is huge.
I do not want anyone to misunderstand me. MS is a complicated, unpredictable, and sometimes downright awful disease. We still need better treatments and greater access to care.
There is more reason for hope today than there was when I was 23, and that is worth celebrating.
So, what would I say to that scared young woman who received her diagnosis on November 14, 1997?
I would tell her that life will not look the way she imagined. There will be heartbreak, frustration, and things she will miss terribly.
There will also be love and laughter. She will find friendships, experience adventures, and meet a husband who will become her partner as they navigate a life neither of them expected.
I would tell her that she will find ways to make a difference. Her voice matters. Her story matters.
Most importantly, she does not have to be positive every single day. She can be grateful and angry, hopeful and sad. She can be strong while admitting that things are hard.
She can be all those things because she is human.
Twenty-nine years later, I am still figuring it out.
MS has been along for the ride for almost three decades. I have learned to put it in the trunk rather than let it ride beside me, although I will not pretend it is always easy to keep it there.
I will not celebrate MS or pretend I am grateful for everything it has taken. I will celebrate the life I have built, the people I love, the opportunities I have found to help others, and the progress we have made in understanding and treating this disease.
I will keep hoping for even more progress in the years ahead.
To anyone newly diagnosed, frightened or wondering what comes next: I cannot tell you exactly what your journey will look like. None of us can. Please know you are not alone. Find your people, ask questions, seek support, and remember that your diagnosis is part of your story, not the entirety of it.
Twenty-nine years ago, I was a scared 23-year-old girl.
Today, I am a woman who has lived, loved, lost, laughed, and learned a whole lot about navigating life with MS.
It is complicated.
It is my life, and I am still living it.