No Such Thing as Normal
AN INTERVIEW WITH TARA WILKINSON
Injuries are part of life for teenage athletes: most young competitors have the willpower and drive to push through until they are capable to competing again. But what happens when what seems like a relatively straightforward mishap at a team practice triggers an avalanche of health problems? Caregiver of traumatic brain injury survivor Becca Bolanos, Tara Wilkinson, shares what it is like to have a brain injury turn life upside down.
So Tara, tell me about yourself.
Believe it or not, it’s a bit difficult to unravel my story from Becca’s. Our journey is almost nine years long now, and my life is so intertwined with hers that who I am individually has been somewhat lost in the chaos and everyday stress of being a caregiver/health manager. But I will try.
I am a mother of four children ranging in age from 26 to 18. I started having kids while my husband was in college and grad school, so didn’t get a degree at the time. I felt an overwhelming need to go back to school in my mid-30’s and to get it done quick, so with four young children I enrolled at BYU full-time and got a full four-year degree in three years. I graduated the same day as my 20-year high school reunion. I now own my own consulting business, working specifically in the library software industry. It plays well with my love of words and reading.
Can you tell me about the accident that started this whole process?
Becca was an athlete and loved to play sports. Her favorite was basketball, and she made her 9th grade team at South Hills Middle School. During a practice a few days before Christmas she was up in the air making a layup and one of her teammates rammed into her full force and sent her flying.
We weren’t there. My friend that had carpool duty that night drove her home. Her friends carried her in and told us only that she may have broken her foot. So that’s where our journey started – treating a broken foot. She was put into a boot and we assumed all would be well in 6-8 weeks.
At the time, did you have any gut instinct that this wasn’t a simple TBI? Or was your focus elsewhere.
Again, we at first were only treating a known broken foot. We had no idea that she had hit her head and been knocked out – no one told us that part.
Unfortunately, over the next several months and then years, her health deteriorated rapidly. She was so exhausted she couldn’t get out of bed. She missed a TON of school and I was fighting with them all the time. Her senses and the way her body functioned changed so dramatically it was absolutely overwhelming. For example:
She became hyper-sensitive to light. She would never go outside because it was physically painful. We had to have the lights dimmed in the house for YEARS. It was like living in a cave.
She was hyper-sensitive to sound. We spent years only being able to whisper around her. I could only ever vacuum, do the dishes, etc. if she was in a separate room with earplugs in.
She began to sweat profusely all the time.
She couldn’t regulate her body temperature.
Taking a shower became a nightmare. The process would so overwhelm her body that she would be exhausted and sleep for several hours afterward.
She spent years having hallucinations at night that kept us ALL awake as she screamed and panicked.
She had constant, debilitating headaches.
We went to doctor after doctor after doctor asking why a broken foot would cause all of these problems, and they ALL told us that it was all in her head and that she needed therapy. It took us 3 ½ years to find Dr. Coleby, the one doctor who would approach it differently. HE was the one who asked us if she hit her head during that initial accident. After going back and talking to her friends, the full story came out and we learned that this was a brain injury after all. And having gone undiagnosed and untreated for so long, she had developed a very bad case of POTS.
[Editor’s Note: The connection between brain injury and autonomic dysfunction or dysautonomia needs to be talked about more often. Becca’s case is an extreme example of what can happen when a serious TBI combined with preexisting conditions, in her case, Ehler-Danlos hypermobility syndrome, goes untreated until the problem is almost intractable)
Most parents/caregivers have a moment when they know, instinctively, that they have crossed from “normal” to a new place—call it the new normal, no man’s land or however you think of it. When was that for you and how did you handle it?
We have spent years teaching Becca that “normal” doesn’t truly define ANYONE and that it’s kind of a stupid word. Every person is different. Every person’s life is different. I don’t think there are any two people who actually have the same “normal” anymore. Families and relationships and work and school and health are all so complicated and weave together in such a complex way. We do ourselves a great injustice when we compare ourselves or our lives to others, so we try not to. We just live our lives with these difficult cards we have been dealt and work to define life on our own terms and not in relation to anyone else.
That said, what HAD been “normal” for our family did change dramatically in every way possible. I felt it pretty quickly into her body starting to change and we became hermits while trying to deal with her. People complain about being required to quarantine for a few months. We were essentially quarantined for YEARS in having to take care of her around the clock.
I would love to say I handled losing the life I knew with grace, but like everything else in this journey, we have simply had lots of highs and lots of lows. Sometimes we have hunkered down and loved our time together. Sometimes it was so painful to be left out of everything and never be able to do anything I wanted or even needed to, that I found myself hiding in my closet to cry and sometimes be almost breathless when I tried to take it all in. It was particularly acute when my other kids started hating me for being a boring mom now and never being able to do anything or go anywhere. We haven’t had a family vacation in 9 years!
What have you done for yourself throughout this process, to make sure you are capable of keeping up with the demands of being a caregiver?
Not enough. Definitely not even close to enough. Taking care of Becca has, until recently, been a full-time job. I also have a regular full-time job, although I am incredibly blessed to work at home since I own my own business. I have a great husband, but he has an incredibly demanding job that requires him to work 12-14 hours a day. We need the money because of the never-ending medical bills, but I almost never have his help. Nor do I have any real support other than a few close friends to help lighten my load. Most people are scared of her condition and don’t know what to say, so they just don’t come. It has always been just me, with almost no breaks ever. I would be lying if I said it hadn’t taken a large physical, mental and emotional toll on me.
Now that Becca has made such great improvements, I am finally taking the time to try to get exercise, read, and re-discover what I want my life to be like going forward. I have been so wrapped up with Becca that this will be a process for me. That sounds so pathetic!
What is the most helpful thing someone has done/said and the least helpful thing someone has said/done. What advice would you give someone who is new to caring for a brain injury survivor knowing what you know now?
Most helpful: When Dr. Coleby said, “I can explain all of this.”
Least helpful: When people with no medical training or that didn’t live with this 24/7 told me I was doing my daughter a disservice by enabling her behavior and not forcing her to get out and live her life. I was a bad mom and not doing the right thing by my child. OUCH!
My advice: Try to immediately surround yourself with people who get it. Proactively reach out and find support groups, either in person or online. Connect with those who can understand and validate what you are going through, because they become your lifeline in a world that so few people can comprehend. That kind of support and knowing you are not alone is literally lifesaving.
You mentioned medical PTSD. This is a real problem faced by most patients and caregivers who face unexpected medical challenges. How can this be better handled by the medical establishment, a patient/caregiver’s community and society at large? Do you feel comfortable sharing examples and how they were or weren’t resolved?
Almost all of our traumatic situations have come because the nurses wouldn’t listen. While not all nurses obviously fall into this category and we have had some outstanding experiences with many wonderful, compassionate and highly skilled nurses (including the AMAZING trauma care Becca received after her auto-kidney transplant three weeks ago), by and large doctors and nurses tend to put their patients in a standardized box so that everyone gets the same treatment that fits within the parameters of what they are comfortable with. If you have any conditions or needs that are outside of that box, they get very put out and even hostile. Patients aren’t looked at as individuals with specific and varying needs. I have had to learn to fight, and I mean FIGHT for what I know will help Becca while in the hospital. Two of the biggest examples:
1. Four years ago Becca became the second person in the state to be given a MALS diagnosis. There were no surgeons in Utah at the time that could do it, so we were required to travel to California. Twice. After the surgery the nurses refused to listen to my advice on what pain meds did and didn’t work for her given what she had previously taken. They ended up taking her off of EVERYTHING the day after a major surgery and just let her suffer. Her pain spiraled wildly out of control and it was hell. I yelled until they agreed to give her something. Then what do you know – they realized that her pain was so far gone that they were going to have to give her pretty strong stuff to reel it back in. Long story short, they gave her too much fentanyl.
Since they completely, inexplicably didn’t have her hooked up to any machines, they didn’t see anything going wrong. The only reason she is still alive is because she begged me to hold her hand while she fell asleep and not let go. Her body did this really weird twitch thing I can’t explain. I turned on the lights and she wasn’t breathing. Her lips and skin were blue. She had no heartbeat. I’m pretty sure I screamed, and it was a traumatic next 10 minutes while they gave her NARCAN and physically pounded on and slapped her trying to revive her. It was absolutely traumatizing. Note: The next day they called in a pain management doctor that fully agreed with my assessment on what pain meds would actually work for her.
2. Before Becca had her brain/spinal fusion surgery in New York, we had to take a preliminary trip out there to perform a much simpler brain surgery to assess whether that invasive of a surgery would work before performing it. It was supposed to be a simple process of putting a little bolt on her brain that would monitor some different things. As she came out of that surgery, she was happy and talkative, and they put her in the ICU overnight as a precaution.
Within a fairly short period of time, she changed. She became non-responsive and her body was soaked with sweat. It became a bit colder. I asked the nurses about it, but they weren’t worried. They said she just needed sleep after a surgery like that. I kept a close eye on it and she continued to get colder and was just covered with perspiration to such an extent that that I could hardly keep up with wiping it off of her. I repeatedly called in the nurses who would tell me, “She just had brain surgery. This is normal. She’s fine.” I continued to pitch a fit until an actual doctor came in and tried to take her temperature. What do you know – it was so low it wouldn’t even register on the thermometer! She was below 92 degrees and hypothermic. Her organs were shutting down. They had to get some special equipment to slowly raise her temperature 1/10th of a degree at a time. It was a traumatizing night that only got worse.
I kept asking what would have caused this, but no one seemed to take me seriously. It wasn’t until the neurosurgeon came in the next morning and was told what had happened that they realized something bigger was going on. He immediately knew that she likely had a brain bleed and sent her for tests. Long story a little bit shorter: he had accidentally nicked an artery in her brain, and she had bled into her brain all night long, giving her a large hematoma. They had to do an emergency craniotomy that took an excruciatingly long number of hours. They put us in a special, isolated waiting room for people whose loved ones probably won’t make it. What should have been a simple trip that left her with a teeny hole in the top of her head ended up being one where she had her head shaved and the whole front of her skull cut in to.
After the surgery was over and we knew she would live, there were still a lot of questions as to what kind of brain function she would have. It was a process to have her go from someone who couldn’t talk or move or barely recognize us (for about a week) to back to normal (several months). I have a heartbreaking video of us in the hospital being so excited that she could actually hold and use a spoon. I have never shown her because she doesn’t remember any of it and doesn’t need to comprehend just how bad it was. I watch it on occasion, though, to remind myself of how far we have come.
When we flew into NYC for the second time for the actual brain/spinal fusion surgery, my whole body involuntarily started to shake as the plane started to land. My husband still starts to shake just going to a local hospital.
You and Becca have come up with this terrific business together. Give me your take on this process and what your goals are.
During this journey, Becca was initially mocked and made fun of by most of the people that she knows. Over time and having to be stuck at home all the time, she was eventually just forgotten about. Her friends all just abandoned her because she couldn’t actually do anything. No one cared to come see her. She was so desperately alone.
But to her credit, instead of becoming TOO bitter (we did have our phases) her heart grew and all she has ever wanted through all of this is to ease the pain of other people who are similarly suffering and to let them know that they don’t have to suffer alone like she did. We’re not in it for the money – it has cost us tremendously, actually. She would give them all away for free if I would let her and if we could afford it. She simply wants to heal the world. That’s her goal!
Whenever you reach a place like the one both of us are at, when you have been on this caregiving track for years, there is bound to be an accounting of losses and gains, of grief and triumph. For me, I didn’t expect how massive the grief could be at times. But that grief has also helped reveal goodness and kindness where I wasn’t expecting it. What have been some of the pivotal points for you?
You’re right – the extent and depth of this kind of grief is something you could never have anticipated. That’s why it is so important to make connections with people who get it.
There is definitely an accounting of losses and gains:
I have lost a good number of my friends – but the new ones I have made are better ones. Their value to me is beyond my ability to describe.
I have lost the person that I was to a great extent – but I now have the chance to re-define who I want to be going forward given all of these experiences.
The financial, mental and emotional toll this has taken on our family is inconceivable. But my relationship with Becca is stronger and closer than most mother/daughter ones.
I think my most pivotal moments have been:
Choosing to define our lives as normal. Not just “for us”, but simply our normal not compared to anyone else.
When we stopped focusing on all the things that we CAN’T do and made the choice to focus on what we CAN do given the constraints of these illnesses. Deciding that our lives were going to still have purpose and meaning, even if we had to create it ourselves.
Choosing to go public with our struggles and starting OurMonsters. We’re not really a public/social media family. We don’t vie for attention or want everything we do to be recognized and validated by others. But this has been the vehicle to help Becca to heal and for her to try to help others to know it is “normal” to have life struggles and that we can help support each other.