I realize how lucky I am to be able to travel at all but that doesn’t mean it is easy. Travel always takes a lot out of me. I start premedicating days in advance. I count and organize meds and supplies to pack and repack. I try to prepare myself for the emotional and logistical stress of air travel with luggage full of IV bags, line supplies, and dozens of bottles of pills and vials of IM and IV meds.Even when everything goes smoothly, I need a ton of meds, sleep, fluids, and easily digestible food to recover and get closer to my baseline.
The fact that I travel as often as I do is largely a testament to my friends. I am lucky to have such incredible people in my world that all the strain and stress of traveling to visit them is worth it. Being with people like that has a way of pushing away all the stressful things about my life. I also come home feeling peaceful and more like myself.
I met my friend Pat a few years ago when she came to Boston for MCAS treatment. She lives in Hong Kong for most of the year and was my coadventurer on my trip to the mainland China and the Great Wall. She prosecuted murder trials in Toronto for years and has an endless reservoir of fascinating stories. Her husband is wonderful and the most organized prepared person I have ever met. Their daughter is currently in university and is funny and bright. She actually did some behind the scenes organization of the blog this past spring. This family is very special to me.
On Thursday, they kindly drove me two hours away to see my friend, Kristina, and her family in Sarasota. I met Kristina a few years ago when her son had no safe foods and was reliant upon her breast milk produced by Kristina while she was surviving on a two food diet.
In October 2015, Kristina had a catastrophic stroke in her brain stem. I have written about this in great detail and am not going to rehash it but you can read about her here, here, and here.
Kristina has locked in syndrome as a result of her stroke. Her mind is completely intact but she was completely paralyzed and unable to speak. People ask about her a lot and Kristina said it was okay to give everyone an update.
The scariest part of Kristina’s stroke was the amount of things her family was told she would never do. They said she would never be able to communicate. They said she would never breathe without a ventilator. They said she would never eat. They said she would never regain any movement. They said she would never recover any of the function she lost.
Kristina started recovering some motion in her head, neck, and face when she went home in June 2016. She could communicate by spelling words by blinking when someone recited the alphabet to her. It was a very slow process and very taxing for Kristina and her family.
Kristina worked in physical therapy before the stroke. When she went home, she had an amazing support system of friends who were physical therapists, occupational therapists, and speech/swallow specialists. These incredible people donated their time to give her many hours of therapy not covered by her insurance. These people, along with Kristina and her relentless family, have helped her to regain an astounding amount of function.
Kristina can move her arms and legs, although some of the movements are very small. She can control some fingers and her left thumb. She has much better facials and eye control. She is able to use a Tobii system to communicate now. She types out the words and the system says it aloud. It also allows her to text, make phone calls, and use social media. This incredible technology has given her a voice after almost a year and a half of not having one.
Kristina is getting stronger by the day. While I was there, she did edge of bed exercises where she would balance herself with only support at the very bottom of her back. Her core is now strong enough to support her upright. She can turn her head while sitting up also. She sat up for about twenty minutes without needing a break!
Kristina had a tracheostomy to help her breathe since the stroke. She now breathes normally and medication changes have allowed her to have the trach removed. She also recently had a picc line removed because she no longer needed it. She can chew and swallow and eats a fair amount of purees. She still gets a lot of nutrition through feeds in her G tube but is working towards eating mostly by mouth.
Her overall health profile is hugely improved. She is pretty stable these days. Her stamina is much better. She is able to go out for appointments and errands with a specially equipped wheelchair van. She recently visited an organic farm to discuss growing safe foods for her son who has MCAS.
Last year, I visited Kristina on August 10. She was still Kristina but she was in a bad place emotionally. I firmly believed that if she could get to a better place with her communication that she would regain a huge amount of emotional health.
I visited Kristina this year on August 10 and am thrilled to report that she is in a much happier place. She made the decision several months ago to move in with her parents to make it easier to ensure that she was always getting the very best care.
Her son is with her five days a week and he loves his Mama. She talks to him with her Tobii software and he loves it. He pushes her wheelchair around and likes to eat and watch tv sitting in her lap or in between her feet on the footrest of her wheelchair. His MCAS is also improved although there have recently been some problems with his diet. I am confident that with some effort that we can get him back to a good place.
I stayed for a while and Kristina and I gossiped and shared some funny stories. It was lovely and such a treat to see her feeling much more like herself. Her mind is so clear and her energy is so good and against all odds, her body is continuing to recover. There is literally no medical precedent for this. Kristina is the only person with locked in syndrome known to have regained function after almost a year of no gains and she pretty much did by sheer force of will.
When someone’s body does things I don’t understand, I assume that there is a scientific explanation and I just don’t know what it is. But I have never felt that way about Kristina. Her astounding recovery feels supernatural. It feels like an actual miracle.
I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.
I was sad to leave Kristina but was excited that she felt up to meeting my friends who have heard so much about her. She met Pat and her daughter when they dropped me off. Later, she met my friend, Nicole, when she picked me up that night.
Nicole and I met years ago in a mast cell FB group. She was the first person I knew other than myself who also had a port that she accessed and used herself to administer routine and rescue meds. She is half my adventuring partner and half my adopted little sister. I’m currently at Nicole’s horse farm outside of Ocala. This place is so beautiful that I can almost feel it nourishing my soul.
Tonight, I went to a dinner party her parents were hosting and met a bunch of great people. A couple attending did not speak English and I was glad for the opportunity to connect with them in Spanish. It was just an all around pleasant and fun night.
I’m going home tomorrow night. I never feel like I have spent enough time with my friends but it is good motivation to come back soon. I expect I will be back next summer. In the meantime, I am so very grateful to be living this life with these amazing people, and for the refreshed mind and spirit they give me.
Many thanks to all the people who keep Kristina in their thoughts and prayers, it means a lot to her. Kristina’s story is so powerful and a lot of people have connected with it, including lots of people who don’t really know her. A community of caring people can be so encouraging and uplifting.
Alright, time to wrap this up. It’s late and I have an appointment in a morning to ride a horse named Porkchop.
