Thanks to LymeNow, I had the privilege of receiving this absolute treasure of a gift from my Dad. As part of Lyme Disease Awareness Month, LymeNow asked lyme disease warriors and their support team to participate in a special letter writing campaign.
In every letter shared, there was so much collective wisdom, empathy and understanding. As the month went by, I was moved by the sentiment and honesty in each new submission. It was such a beautiful expression of the strength and support in this community.
One day, with a tired heart, I told my Dad how sad I was that I hadn’t had the energy or mental strength to participate in the campaign yet that month, and was concerned I just wouldn’t be able to make it happen in time. “There’s always next year…”, I said, but deep down I so wished that I could contribute.
To my surprise, a few weeks later, the letter below popped into my email inbox. Like a breath of fresh air I was reminded that wherever I am challenged I am equally supported; that I am seen, heard and loved even when I feel swallowed by illness. In addition to it being shared on LymeNow, I wanted to share it here too
“Don’t ask, why me? Rather declare, because of me!”
My 20-something daughter, Natalie, was recently diagnosed with chronic Lyme. At least now we have an explanation for her years of pain, discomfort, fatigue, aching, physical deterioration to which she has been a victim. She will begin treatment for this disease shortly.
I had the fortune a few weeks back of having lunch with her in a café near her home. Our lunch was her “event” of the day—where she mustered strength, courage and determination to spend a few hours battling through pain to be with someone she loves. As she sat across the table, I observed how she was clearly a victim of Lyme.
Tired eyes, a brow furrowed with migraine pain, a gaunt frame, a voice that exuded effort with each sentence. I felt so saddened that my daughter bears this burden, that the gods have cast this disease on her with such disregard for the incredible princess that she is. I kept a smile on my face for her to witness, but inside I bemoaned, “how can life be so unfair!”
And then we started our lunch conversation. First, she talked of her gratitude — a gratitude that has no limits. She praised her family, her friends, her doctors, her Instagram buddies. And then she praised them all over again. Her orientation was towards what she has been given rather than what she has lost. She exuded such grace.
Next, she reflected on what she has learned over the period of her illness. From her years of medical treatment, she is not only an expert in chronic illness but also a master of acceptance and accountability. She understands that the doctors don’t have all the answers. She has learned that our healthcare system today is comprised of specialists who rarely overlap and team together for solutions. She accepts this and has appointed herself as the “quarterback.” She carries the confidence to evaluate and discern the multiple inputs of her practitioners. She is accountable to herself for the treatment of Lyme. She shares such wisdom.
Then she talked about her chronic illness in terms of her perseverance for chronic wellness. Rather than focusing on the limitations placed upon her by Lyme, she talked about her liberating tactics to feel well. She pursues wellness through eating in an incredibly healthy way, through providing herself comfortable amenities so she can rest, through acceptance of moderation with her social interactions, through being able to say “no” to things she may desire from impulse but suffer in consequence. Her conviction to live well is so strong that she started an Instagram page a few years back where she could share her “intentions”. Today that Instagram page, @mindfulmigraine, has more than 10,000 followers who are inspired by her pursuit to be well. She illuminates such positive spirit.
Finally, the conversation where she was revealing such strength and truth climaxed to a point where she declared to me:
“You know, my brother asked me recently if I had the chance, whether I would choose NOT to have this disease with its struggles and challenges or whether I would choose to have it and be the person I am today. And the crazy thing is, as much as I hate this disease, I would not want forgo the person that I have become as a result of facing its challenges. I mean, I have learned to say, “don’t ask why me? Rather declare because of me.”
Wow… as a father, I could only gaze with speechless wonderment at this princess, goddess, warrior, oracle, caretaker, and giver — this daughter of mine.
But as a human, rather than a father, I know that all of you who suffer from this disease have, within you, these same indefatigable strengths. Amidst your pain and sorrow, you exude gratitude, you build wisdom, you illuminate positive spirit, and you define yourself rather than let indiscriminate acts define you. Continue being brave. Go with grace. You are stronger than you will ever know. I am so proud, hopeful, and inspired by you.
I hope this letter is a reminder that you that you are seen and heard too.
Conversations with my Dad always lift my heart, and this one-sided one was no exception. I have the printed copy hanging on my closet door that I now see every day.
May his words remind you that you are not alone; connected always to a network of invisible supporters and warriors believing in you and rooting for you. You are stronger than you will ever know.
All my love to you
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.