It’s amazing how much we try to control in life so we can achieve our dreams, like a career, music, art, or building up our family’s strengths. We are surrounded by distractions, but there is pure satisfaction from something going as planned, isn’t there? Seeing results for your hard work.
By nature, I’m type A and a really hard worker but also a deep thinker/dreamer. It’s important to me that people can count on me. Knowing that I can accomplish or help someone else, a shared goal or a personal dream is what makes my heart flutter.
So all of these things are also sometimes a negative, because life is rarely on track. I’m okay with the unexpected change of plan. Working in public relations, crises and communications requires you to be able to handle the chaos. But I wasn’t ready for what life had in store for me.
I had to learn the hard way that this wasn’t really my plan all along.
Six years ago I was diagnosed with multiple sclerosis (MS). This rocked my world. I grieved for my children and possibly not having the mother they so deserved. The tears continued to fall when I realized I might not be the woman I dreamed. My throat would close at the utter, complete, loss of control in my life. I basically mourned my life as I knew it. But, I’d be dammed if I let anyone feel sorry for me (a curse of the independent people out there).
My husband said I only had two days to cry. Those words were harsh, but I think he was equally confused and worried this would overtake me. Maybe in some way he feared that the person he loved so much would be lost forever. I was deeply scared too; the kind that makes your body shake. This was unchartered territory.
But I had to find a way forward, and to be honest, it took me a few years. I didn’t like the idea of being someone scared of the future. I had made some diet and supplement changes and after some time, reluctantly got on medication. I was extremely lucky, I only had some numbness and otherwise have not had any physical issues. It was the emotional ones that were really pushing on my heart, the future, and who I would be tomorrow. I had find a way to uncover my own peace and strength with this chronic, unpredictable diagnosis. I tried ignoring it, but that’s the funny thing about that strategy…it creeps around in all the places that matter.
Eventually I spoke with a therapist and started letting more friends and family know. I went to a few MS meetings and they scared the hell out of me and I vowed to never go back. [I have gone to a “People with MS for 40ish and Under Happy Hour” meeting a few times that were good…these things do actually exist.]
There’s still work to do. I still have to tell my kids about MS. I thought I might last summer but those that know my older daughter and her obsession with death thought she might think I was going to die. But as of today, I have been in remission for four years (!!) and am living for today, tomorrow and every day after. Remission is when you have no symptoms of the disease (via annual MRI scans) and I’ll take it…day by day, year by year as it comes.
Lately, I’ve been wondering how I can help others, maybe find peace with this total change in life. I’ve done such a disservice by trying to solve this myself instead of looking to others. Maybe I can save someone else the heartache. Let them know there is another side and that it is pretty amazing, just a slightly different story.
Here’s to finding peace with life’s limitations, strength in and gratitude for what you do have, and living every moment as though it matters.
Ps, I am completely open to talking about MS if you want to ask me casually or have a friend who needs help. Anytime.
4 thoughts on “The Diagnosis”
Erin. You are an incredible woman with great insight and love of your family and friends. If you ever need an ear or a shoulder, I’m here for you too. 💕
That means so much to me, thank you, Patsyt! Hugs!
Erin- your grace and relentless pursuit to navigate through the personal and emotional toll a diagnosis such as MS takes and sharing the vulnerability a disease brings. Your heart is reflective in everything. Being their for others and expressing your experience and extending support, is amazing gift.
Thank you, Kim, for your kind words. It is so thoughtful of you to take the time and send such a positive and supportive message!