When I see people I haven't seen in awhile our conversation has a way of revolving around my illness. I don't do it intentionally. My friends and family are curious about my progress and healing from my illness takes up a lot of time and brain space. My fellow blogger and writer Susan Pogorzelski posted "10 Things About Me Not Related to My Illness" on her Instagram and I thought it was a great idea. I think it's something we should all think about. I did a similar post called 25 Things You Didn’t Know About Me, which was more fun facts, but this will be more about who I am as a person.
10 Things About Me Not Related to My Illness:
1. I recently watched Minimalism: a Documentary About the Important Things and now my husband and I are planning to downsize our living space and get rid of most of our things. I also plan to read the book Minimalism: Live a Meaningful Life by Joshua Fields Millburn, one of the men featured in the documentary, to further my understanding of minimalism.
2. It's been a lifelong dream of mine to go whale watching, and I finally fulfilled that dream when we went on a cruise in Alaska in July/August of 2017. During the cruise we saw whale spouts or tails almost every day. Then, when we were in Juneau we went on a whale watching tour and saw tons of humpback whales and even an orca. We were so lucky to see a double breach (although I only saw the second whale). It was amazing, because whales don't usually breach in Alaska.
I plan to get a humpback whale tattoo for the next Ink to End Lyme event to represent rising up from under the water and strength.
3. Podcasts are my new obsession. I listen while I'm getting ready in the morning, commuting to work, and while doing chores. My favorites include: Lyme Ninja Radio, The School of Greatness, Beautiful Writers Podcast, Pod Save America, 2 Dope Queens, Gleeman & The Geek (Minnesota Twins podcast), The Art History Babes, You Must Remember This, and The Social Work Podcast. Maybe I'll start one of my own one day.
6. I love the water and anything that has to do with water. The ocean, lakes, rivers, waterfalls, and even fountains. We visited Niagara Falls this past summer and it was breathtaking.
4. I grew up in Minneapolis and it's still one of my favorite places. I go back about three times a year and always love driving along the river and seeing how things have changed since the last time I was there. The friendliest and most down to earth people live in Minnesota. I'd move there if it wasn't so cold.
5. Chai tea lattes are my biggest weakness, so I bribe myself with them. If I go to a yoga class, I allow myself one small chai tea latte (with alternative milk of course). At home, I brew a cup of decaf chai tea and then add hemp milk.
6. I love taking our dog, Scooter, on walks around our neighborhood in Chicago. The truth is he actually walks me, because he knows where he wants to go and leads me there. He's stubborn, but incredibly loving. Sometimes I dress him up and he hates it.
7. I don't have any children and I'm not currently planning to have any. I have a niece and nephew whom I adore and are good for a kid fix when I need one.
8. My lucky number is four and my lucky symbol is the four-leaf clover, even though clover is considered a weed in Ireland. The reason is because I was born on June 14th.
9. I'm a true Gemini--full of contradictions and a personality pulled in opposite directions. Gemini's are known communicators and I love to communicate through speaking and writing. We're naturally inquisitive and ambitious, but also easily bored and overly opinionated.
10. My favorite thing to do is travel and my goal is to see the world. The next destinations I want to visit are Hawaii, London, Italy, and Australia.
Please consider doing this exercise. It helped me remember that my illness does not define me. I decide what defines me. I would be happy to create a blog post for you about your ten things. Just reach out through my contact page with your list and a few pictures.
"Identity cannot be formed or fabricated, but emerges from within when one has the courage to let go." - Doug Cooper
On this blog I write a lot about books, because I truly believe books can heal. Most of the books I highlight are about Lyme or chronic illness and fall into the health or self-help categories. These are five books that changed my life before I was diagnosed with Lyme and they continue to be five of the most inspirational books I've ever read. One is a book of poetry, one is a memoir, one is self-help, and two are novels.
5 Books That Changed My Life:
1. The Selected Poems of Nikki Giovanni
I was first introduced to Nikki Giovanni’s poetry in high school and she remains to this day my favorite poet. This collection showed me that a book of poetry can be just as influential as any novel or non-fiction book. I have sixteen poems bookmarked in my copy and whenever I need inspiration or just want to feel filled up I read one. Her poem, "And I Have You," was read at my wedding. Many years ago Ms. Giovanni appeared at a bookstore in Chicago and I didn't go. I still regret it, but I redeemed myself when I saw her speak at the Harold Washington Library on April 30th, 2011.
"though I worship nothing (save myself)
you were my savior—so be it
and it was
perhaps not never more or ever after
but after all—once you were mine"
2. I Know this Much is True by Wally Lamb
Reading this 897 page epic was the greatest literary journey I've ever been on. I consider this my favorite book and Wally Lamb my favorite author. This book encompasses all my favorite subjects: family dynamics, mental illness, substance abuse, race relations, redemption, and love. Mr. Lamb is my biggest writing influence and if I can learn to paint a picture even half as clear as he does, I will be on my way.
"that the evidence of God exists in the roundness of things."
3. Their Eyes Were Watching God by Zora Neale Hurston
I don't even remember what made me pick up this book. I probably judged a book by its cover, because Their Eyes Were Watching God is one of the best titles of all time, especially when you know the context. Reading this book is like reading a novel length poem. The language and imagery has yet to be matched in any book I've read before or since. I could read it fifty more times and still get completely lost in it.
"They seemed to be staring at the dark, but their eyes were watching God."
4. Lucky by Alice Sebold
Lucky is Alice Sebold's memoir of being raped by a stranger in college and how it transformed her existence. You probably know Alice Sebold from her other bestseller The Lovely Bones. This book broke my heart for the writer, but also for all women. It left me angry and appalled by the complete disregard for victims' rights. People need to be aware of the retraumatization victims, like Ms. Sebold, experience through our legal system. Her nightmare occurred in the early eighties, so I can only hope that things are better today.
"I live in a world where two truths coexist: where both hell and hope lie in the palm of my hand."
5. A New Earth: Awakening to Your Life's Purpose by Eckhart Tolle
This book came to me at the exact right time in my life. I was going through a mini identity crisis and felt like I was losing myself. It seemed like everyone around me was content in their position in life and I was the only one left wanting. This book taught me that my true purpose in life is not an occupation, a hobby, or a talent, it is to find a state of consciousness where I am able to live in the present at all times. Since reading this book I have made a concerted effort to not compare myself to others and to allow myself to just be in the moment, because it's the only thing that's real.
"When you don't cover up the world with words and labels, a sense of the miraculous returns to your life"
What are the books that changed your life?
"A lot of people ask me if I were shipwrecked, and could only have one book, what would it be? I always say 'How to Build a Boat'" - Stephen Wright
I've been in treatment since October of 2015, but was officially diagnosed in January of 2016. It's been almost two years immersed in the Lyme life. Thanks to the thousands of other knowledgeable Lyme patients and experts, I've learned so much in such a short amount to time. There is still so much to learn, but here is what I've learned so far.
The Best Lyme Advice I've Received So Far:
1. Many things will get better, some will get worse.
For many Lyme patients just getting a diagnosis is a giant leap in the right direction. After that you will start treatment. Treatment for Lyme is like the song Opposites Attract by Paula Abdul. You take two steps forward and two steps back. Sometimes if you're lucky it's only one step back. It will be forward and back until you reach the end goal of remission. It's easy to lose heart with so many setbacks, but if you keep going forward it will pay off.
2. Write down your current symptoms and track your symptoms over time.
When you've had Lyme for a long time, sometimes it's hard to remember if a symptom is new or something you've experienced before. I track my symptoms on a calendar, so I can go back (up to a year sometimes) and see if I was experiencing the same symptom during that season. It's time consuming, but it's been very helpful at doctor's appointments.
3. Always keep a copy of your current medications and supplements on hand.
With all the changes in medications from month to month it can be hard to keep track. I keep a list of all my medications and supplements in a GoogleDoc and then update it after each change. You will be asked 50 bajillion times to list your medications on forms. Because we tend to be on so many, it's more painless to just carry an updated list and attach it to forms rather than writing them all out over and over.
4. Come up with a plan of what you will say to conventional doctors.
It catches me off guard every single time I see a new doctor. What do I say? Do I tell the truth and risk being told what I have doesn't exist, or do I skirt around the subject. In my case I am fortunate (although that's probably not the right word) to have a second chronic infection that is recognized by the medical community, so I disclose that instead. Some patients bring current Lyme research along with them to present to doctors, some choose not to mention it.
5. Go with your gut.
You will hear a lot about how the treatment you chose is "bad." Antibiotics are terrible. Herbals aren't strong enough, etc. You need to decide what is right for you and what makes you feel better. I think of my doctor as an exceptionally experienced and knowledgeable guide, but ultimately the choice is mine, because I'm the one who has to live with it.
6. Let go what no longer serves you.
Lyme is here to tell us something. It's here to tell us that we need to make major changes in our life. When you have Lyme you have to go through a physical and mental house cleaning. Do you need to let go of a job, a relationship, a behavior, a bad habit? It's time to do some deep soul searching and put yourself first for a change.
Each day I learn something new on this journey, adding up to a lot of wisdom I will be able to take with me into my life after Lyme.
What's the best advice you've received so far?
"Time gives good advice." - Unknown
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.