I’ve had more than one person ask me lately how I stay positive with all my serious health issues. I want to respond publicly because I feel like there might be others out there who would like to know, but are not wanting to ask me directly. I know there are many friends who suffer from health issues in silence, it breaks my heart when I see so much pain. I just pray and send so much beauty and light to surround those who need support.
I am not religious but I am very spiritual and believe in the power of prayer. I also believe I have lasted this long, thru many many near deaths, for a reason. My time will be up when my time is up but until then I try to live my best life.
I have an amazing, healthy, strong daughter named Zoe, who is twelve. She is a gift that made me believe in god. She was born in 2007 at 1-1/2 pounds, because I had a condition I didn’t know about at the time (besides my juvenile type one diabetes). The condition called Moya-moya causes strokes and seizures. It means “puff of smoke” in Japanese because on an MRI of the head, the vascular blood cells look like a bunch of side roads instead of a major highway, ergo a “puff of smoke.” It’s Japanese because most people who have this condition are Japanese.
I was six months pregnant when I had Zoe. Afterwards, I immediately began having seizures (and a stroke in my right eye which permanently damaged my vision). The surgery to correct Moya-moya was across the country at Stanford university hospital. The dyes they used in imaging for mapping out the transfer of large blood cells (from one side of my temple and again for a second surgery on the other side) caused damage to my kidneys. The surgery was a success but it also was not good in other ways for me. The doctors kept me for 6 weeks in California but I missed my new baby too much and flew back to Asheville. When the flight landed I had a major stroke. It was very severe. I ended up in the neurology wing of Mission hospital, which at the time was on the 6th floor, (same as the NICU my now almost 4-pound-daughter was in). For over a month they wheeled me down to see her everyday.
When my daughter and I got out of Mission, (her a healthy 7 pounds!) I was left with severe damage from the stroke. I had to relearn the alphabet and several multiplication tables.
Eventually, I got better after several years, but my marriage was over. I moved back in with my mother to a large house in East Asheville. I wasn’t planning on staying long as I tried to get my life back together. That is when I was diagnosed with stage 5 kidney disease. I had to start dialysis.
It’s been a long road since. I am still at my mother’s house, waiting for a kidney. In the 4years on dialysis I have been literally falling apart. I had an ear infection that couldn’t heal and made my eardrum burst, leaving me deaf in one ear and needing surgery to stop the damage. I had rips in my intestines from low blood pressure from dialysis, causing me to have major (life-saving) surgery that also took me off the kidney/pancreas list and put me on just the kidney list due to the location of the intestinal surgery. I was just diagnosed last month with a blockage in my heart, requiring me to have light surgery to place a stint this March.
Soooo, how have I stayed myself? How have I remained mostly positive? I don’t pretend. I try to always stay real. I fall apart in private sometimes but I am always real about what’s going on with me. Here are some of the things that make me get up three days a week for dialysis–makes me ignore to ravaged woman in the mirror, make me try to be a loving and present mother, makes me stay strong thru years of falling apart:
•Faith-I believe in a plan bigger than myself. I believe in my place in this plan. It does not come from teaching or examples or any religion, it instead comes from the way god moves thru me when I paint, or create anything at all really. It’s the messages in my dreams that speak to a higher power. It’s the times when I’ve prayed to the universe and I know they were heard and answered.
•Love-My love for my daughter is a love I have never felt before her. My need to help her in this life is so strong. I decided long ago that if I put her first, like a beacon in the night, I would never go wrong. And I have never gone wrong. My love for her and my family and friends keep me strong. I have amazingly thru this have found a mate who adores me, looks thru my multiple scars and sees the woman I am and was. He truly sees me beyond my health issues. He supports me in my endeavors, loves me truly in every way.
•Thankfulness-I am so thankful for the smallest things that go right. I am so thankful for the friends that love and support me as if nothing has ever changed. I am so thankful for the community of Asheville who have donated money for my medical expenses as I wait for a kidney transplant. I am so thankful for every touch of kindness I see in the world. I’m thankful that people a waking up and seeing the things we need to change to create a better world.
•Pets-I have 4 indoor cats, 1dog, 1feral outdoor cat, 1wild but loving raccoon, two wild red foxes, one black bear and a bunch of possums and other wildlife around me. Their beauty and love heals me everyday.
•Work-I’m on disability. It’s automatic when you have stage 5 kidney disease. I still “work.” Honestly, it’s just playing at doing stuff I love. Have a radio show on AFM called Slumber Party, wed 4-6p. It has been on since 2010. I love AFM 103.3fm, I love Slumber Party with my radio friends and interview friends. It makes me happy. I also do Slice of Life Comedy at The Orange Peel. I’ve also done it since 2010. When I got sick I had comic friends help me run the shows for a while. When I got a bit better I started doing comedy open mic shows exclusively at Pulp Lounge. Sometimes I do Afterparties there for big comics that play upstairs. It’s fun. I love the Orange Peel, I love the staff and comics. I love the responsibility of running a show. I only do them on average twice a month. They are on Thursdays which is a dialysis day, but I pull myself together, thankful I have a reason to pull myself together. I am about to launch a new show on BizRadio, 1350am(also soon to be 96.1 fm). It’s called “Everything AVL” and I will be sitting down for a half hour twice a week (Tues &Thur 5:30-6p) to talk to my Asheville friends who are in entertainment and have a business. They will also be podcasts on Spotify, ITunes , Google play and more. I will prerecord the shows so I’m not doing them live on my dialysis days. Im so excited to get started on this new endeavor!
Finally, I would like to say, when things get hard, let your loved ones know. Don’t hide your pain but don’t dwell on it either. Look for things, no matter how small or big, to be thankful for. Look for ways to have hope in your life for better days. Believe in your unique purpose in this world. Know you are loved. I love you.