Ben’s Friends aims to provide patients and caregivers a place where they can connect with others like them. That they find useful information from the experiences of other patients and families as they go on their own journey. That when things are difficult, they will find hope from the success stories other members share on the site.
So we can’t describe how happy we are to hear from members a few years later, telling us about how great things are going on at present.
Lisa joined AVM Survivors in 2018 after her daughter, Kashmir, was diagnosed with an arteriovenous malformation on the back part of her brain.
A couple of months ago, Lisa contacted some of our team members to share the amazing things going on for her daughter. Kashmir has also joined the AVM Survivors community recently and enjoys reading the success stories on the site.
In this blog, we would like to share the story of Lisa and Kashmir, hoping to inspire others with their amazing story.
We all were born and raised in Wisconsin. At that time in our lives, we had been married 28 years. Our children were 25, and 22. With our youngest, Garrett, living at home still. He was saving money for a home. Kashmir was living in Vietnam teaching English.
My husband Tom, daughter Kashmir, and son Garrett. We love having all the seasons to do things in. We all ride snowmobiles in the winter and Tom and I ride Harleys in the summer.
My caretaker journey
The journey as a caretaker really began in August 2018 and lasted around 2 years. My daughter flew back home from teaching English in Vietnam.
She was having extreme migraines and flashes in her vision. She returned and got in with our family doctor. He did an MRI and the same day he called her and explained she had an AVM.
I never heard of an AVM, so I did a fast internet search. It was terrifying what I found on the internet. I was instantly filled with dread.
This was so difficult to explain to my husband. He didn’t seem to understand how serious it was.
I waited for the first neurosurgeons team meeting for them to explain to us what it would entail. There were so many people in the room. Many were standing. They told us the only realistic option was for them to remove the AVM. It was located on her occipital lobe.
They warned us that she could be blind permanently, and that she may need to learn how to walk and talk all over. My husband, Tom, finally understood what I had suspected for weeks. He was devastated.
After the meeting we walked out in sheer shock and disbelief. It was so surreal. They had said she was most likely born with it.
I felt like a failure as a parent. This was something that I couldn’t fix for my daughter.
It was really a rough time and I really didn’t want to consume my daughter with talking about it all the time.
Coping with the situation
The AVM Survivors group was initially the group I found the most helpful. There were some others on Facebook that I belong to, but didn’t find those right away.
The group had others in the same boat as myself and my family. Many that were further down the same path, so I was able to read the issues that had arisen for them and how they dealt with it. This was a huge help.
I read how staying positive was the only way one man had gotten through it. I sincerely took that to heart.
Never once did I play the “What if’ game.
I wouldn’t allow myself to think of her dying. I knew she would need me to stay strong and positive. So on days that I felt just depressed, drained and full of sadness, I would cry in the car, the shower, anywhere when I was all alone. Which wasn’t often.
I was with her all the time. I drove her to 99% of her appointments. But I never let myself cry in front of her. It wouldn’t have helped either one of us. And I highly doubt I could have stopped crying if I started in front of her. I am very close to my children, as they are my everything.
I would focus on other things to think about, like the future.
I did a lot of redesigning my office in my head. I would think of things that occupied my mind. Even listening to happy music helped.
Or I would find something to do that would take my mind off the entire subject. Going for a nice drive helped when it was really cold outside in our harsh Wisconsin winters.
Also, I make things like beef jerky.. LOL. Sounds silly when I say that because Kash is a vegetarian.
Challenges post surgery
Post surgery was not exactly typical for us. Kashmir kept getting infections. It was a longer journey than some and probably a shorter one than some.
Her head got infected 3 times and on the 3rd time, they removed the plate and she wore a medical helmet for a year.
Surgery dates got delayed, her life was put on hold for 2.5 years due from start to finish.
It was a “free flap” surgeon that finally gave her her life back. Basically a tissue transfer but much more intricate and involving blood vessels and a longer surgery than a basic skin graft.
We researched that protein was great for healing, which is a bit more difficult because she is a vegetarian. Protein shakes, nuts, and a lot of seafood which is very hard to get in the Midwest unless it’s purchased frozen. Also, she stayed very active with working out from home each day and before Covid, she would go to the gym multiple times a week.
How is Kashmir now?
Kashmir is living her very best life. Her goal was to move to California and that is exactly what she did.
Kashmir has always saved up her money and used it for traveling. Before, during and after all 4 of her surgeries.
My daughter is so inspirational to many people and to me. She went alone to Guatemala to write her book after she healed. She took all her journals with her and compiled them into a memoir. It includes her healing process and endurance of so many obstacles.
I’m not positive of her next adventure, but I’m pretty sure it includes working on super Yachts. 🙂
She makes my world complete.
For other caregivers
My advice to anyone that has to go through this is to take people up on offers. Any offers.
If they offer to take your patient to the doctor’s office, let them. If anyone offers to pick up lunch or make dinner, let them.
The little breaks you can get are huge. Playing the “What if” game isn’t healthy or productive.
And talking to others in a similar situation truly does help. Just listen and hold their hand. A little empathy goes a long way. Send people on their way smiling.
About me and my family
Hi there! My name is Kashmir and I’m 28 years old. I’m not named after the fabric or the country but instead the Led Zeppelin song.
My hobbies include writing, traveling, working out and spending time at the beach.
I currently live in San Diego but I’m about to leave on a one-way flight to Spain the day after Christmas to join my boyfriend on a new chapter. We are going to work on yachts in the Med! I’m super excited 🙂
I have a wonderful mother named Lisa and an amazing father named Tom. It’s them, myself and my 25-year-old brother, Garrett. We all get along great but they all live in Wisconsin so I don’t see them as often as I’d like. Despite the distance, they are my best friends and we chat every day.
My AVM story
My AVM journey started at age 24 while I was teaching English abroad in Vietnam. I was experiencing debilitating migraines and these strange spirals that would take up my whole field of vision for minutes at a time.
After nine months of being abroad, I came home and had a brain scan. They called me hours after the scan informing me that I had an AVM on my occipital lobe and that those visual spirals were actually visual seizures.
Then it all made sense to me… the flashes (visual seizures), the persistent migraines, the random head pressure. I finally had a reason for these debilitating symptoms that everyone else chalked up as dehydration.
It was almost a relief to know that I was being treated… but at the same time it was frightening. I felt fortunate my AVM was located near the surface so that they were confident in surgery.
I do remember the month leading up to my surgery I had insane anxiety; I thought at any moment my AVM was going to burst and I was going to die. I was really scared and I was ready for surgery because I didn’t want to live like that anymore.
They put me on seizure meds and scheduled me for brain surgery and an induced coma for a month later.
Challenges post surgery
When I woke up from my (induced) coma, I hallucinated for three days straight. Because of the intense hallucinations, they didn’t want me on any strong pain meds. I spent the first month of my recovery in excruciating pain with no relief.
I was seeing crazy flashes and images in my vision that didn’t allow me to read or watch TV. I was forced to do nothing except rest.
I was traveling the world for nine months prior to brain surgery so for me the biggest challenge was adapting to the life of recovery. I didn’t understand the concept of just sitting still to rest, I just wanted to live my adventurous life again.
Unfortunately, I had a hole rip in my head following an untreated staph infection and needed an emergency surgery. Just seven weeks later, another hole ripped in my head from a yeast infection growing on my head.
The doctors ultimately decided to remove the plate in my head and I had to wear a medical helmet. I had all of these skin problems but fortunately, my brain healed fine.
I do have permanent vision loss that restricts me from driving a car and reading complete words, but I’d say it’s a small price to pay.
Takeaways for caregivers and friends
For brain surgery, it was nice to have someone just be with me, even if they were reading or on their phone or watching a movie.
I couldn’t talk, walk or even comprehend a TV show so holding a conversation just made me feel dumb and slow. I really wanted to be alone because I had so much pressure to entertain friends, boyfriend, family… It made me sad because I was so far away from the old me and I didn’t understand how to get it back.
Now if we’re talking about scalp recovery, I didn’t want to be alone. I wanted anyone to hangout with just to remind me I wasn’t going through medical issues… if that makes sense.
I was 25-26 years old and I was so envious of all of my friends living their wonderful, medical free lives. I was grateful for friends who came over and cooked with me, watched movies with me, and brought games or puzzles.
Luckily, I have a fairly large group of friends who were all extremely kind and loving. I also loved when friends treated me normal and brought a bottle of wine over or took me out to the bar just to socialize.
For AVM patients
Have mantras. I had a series of them playing throughout my head to distract from all of the negativity.
– I am alive for a reason
– This too shall pass
– Gratitude and faith
– Nothing is wrong right now (quote from The Power of Now)
There were more than that, but those really stuck to me and I’d repeat them over and over like a broken record.
Some of my best advice was being told that I needed to stop focusing on the future and take things day by day. If that was too hard, it was okay to just focus on the hour… “let’s just get through this hour before worrying about the next one.”
I wrote and published a book about my AVM journey and named it after me (Kashmir).
It originally started as a coping method so that I could heal from the pain that I endured. So many tears went into the writing and I do feel that I’ve healed and finally moved on from it.
Now, I just want to help others going through their AVM journey not only by sharing my story, but being there as a friend for anyone who needs it. Life is short, let’s get through it together!