Journey to Boston

Hello from Boston! Thank you all for your continued support and interest in Sherrin’s journey through her traumatic brain injury. I wanted to give big updates! For those that follow the Facebook page, you noticed that Sherrin has been doing an intensive therapy program at Spaulding Rehabilitation Hospital in Boston since early July. I’ll let my dad update you on how we got here:

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Sisters in Boston!

“After Sherrin’s foot surgery in February and her feet returned to neutral, the most important thing was to get on her feet and really try to get her to walk again. Her Doctor at Walter Reed suggested an intense in-patient therapy session. I initially tried Virginia Commonwealth University (VCU), but was hesitant based upon what I have reviewed on its website I was not sure that they could help. If you recall, when Sherrin first got hurt we had to travel to New Jersey to get her the care she needed. Virginia does not have a good reputation for the care of the brain injured and still sends it’s more severe out of state. However, I did contact the VCU inpatient admissions person and sent her Sherrin’s medical records and release forms so they could begin the process. I also gave her Sherrin’s website (this one) so she could see how she has improved over the past couple of years.

On a hunch I contacted Spaulding Rehab in Boston and asked them if they would be willing to accept Sherrin on an in-patient basis. I sent the same information to Spaulding that I sent to VCU and awaited their decision. Spaulding has an incredible reputation and is linked to Harvard Medical School. To me, it was absolutely clear that Spaulding would give Sherrin the best chance for her to regain the capability of walking. The next day I received a phone call from Spaulding telling me that she would be accepted for in-patient intense therapy. Spaulding made a decision based upon the same information I sent VCU, but VCU could not or, more appropriately, would not make a decision to admit Sherrin. The decision was easy; Sherrin was going to Boston. The next hurdle is how to get her to Boston? My research indicated that Medicaid should be able to pay for it, but going through the Medicaid bureaucracy was going to be a challenge. The minute I got push back from Medicaid, which was almost immediately, I contacted our local Congresswoman and asked her staff to get involved. Miraculously, within about three days Sherrin was approved for transport to Boston and Medicaid agreed to pay lodging and incidentals for one.

When I told Sherrin’s attending physician at Walter Reed she recommended a Doctor at Spaulding that she training with at Chicago Rehabilitation Institute and we were lucky to get him for Sherrin at Spaulding. The good news is that both Doctors are working together and once Sherrin gets discharged from Spaulding that can develop an outpatient therapy plan that complements the progress she makes in Spaulding.

-Dad”

Me (Kaci) again. The intent was for Sherrin to complete a 3-week program. The doctors and therapists have been very pleased with her progress and have wanted to continue working with Sherrin for as long as possible, so now the entire length of the program will be 5 weeks.

We came to Boston on July 10. My mom flew the night before, my dad drove the wheelchair van, and Sherrin and I drove in an ambulance. Let’s just say that 10.5 hours in an ambulance ride isn’t the most relaxing experience, but we needed a vehicle that would allow Sherrin to lie down and stretch occasionally. If she had to sit in her wheelchair the entire drive, then her back would be incredibly sore and uncomfortable. So, the ambulance it was! While in Boston, my parents and I stay at a hotel about a half-mile from Spaulding. One of us always stays the night with Sherrin and we rotate “shifts.” She still needs help at night, unfortunately. Someone has to turn her every two hours and change her diaper as needed. My family has done this routine before but it is still just as exhausting with one person always sleep deprived. It is very rare for all 4 of us to be in the same room since one of us is sleeping at the hotel. I would say that this is definitely the hardest part about being away from home.

Sherrin has been excelling since she’s been at Spaulding. Occupational therapy has been focusing on using e-stim to wake up her shoulder and back muscles. Sherrin has been

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E stim on Sherrin’s right shoulder.

having problems with her right shoulder ever since the accident due to 1) the broken clavicle and, 2) her right side being more sluggish than the left. Since muscles hold joints together and Sherrin isn’t using the muscles in her right arm so much, her arm is slowly dislocating from her shoulder. The e-stim forces her muscles to “wake up” and put back into place. I was very skeptical at first with using e-stim since I’ve seen it done before and haven’t been that impressed, but I was BLOWN AWAY when Sherrin’s therapist put it on her right shoulder. Sherrin looked so relieved the second the e-stim kicked in, relieving so much back pain that has built up over the years. Her right arm has gotten so strong in the past month. She can pull her arm across her body and rotate her hand. The goal is for her to start feeling how these muscles work and eventually use the muscles on her own.

Physical therapy has been predominately all about Sherrin walking (which I love!!!!!). We originally wanted Sherrin to be in an exoskeleton to learn to walk since it’s an incredibly high tech device. There are only a few dozen exoskeletons in the US and, luckily, Spaulding has one. However, the exoskeleton wasn’t right for Sherrin since she has much more

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Sher on the bike outside of Spaulding

muscle than someone who the exoskeleton is intended, such as a paraplegic. Sherrin’s physical therapist suggested a gait trainer instead; a device similar to a walker but has a harness and other attachments. This allows Sherrin to use her muscles to walk vs. an exoskeleton that does the walking for her. Sherrin has gained incredible strength in her hips and hip flexors since using the gait trainer and I’ve seen such amazing progress. We’ve already ordered one and have a gait trainer waiting for us at home so we can continue the walking progress.

PT and rec therapy have also been trying fun things with Sherrin that we normally wouldn’t be able to do at home. Sherrin has been riding an actual bike outside and in love with the feeling of the wind in her hair! This week we’re going to get Sherrin in the pool for a swim lesson and then a kayaking trip on Thursday. I’m particularly excited about the pool. I think Sherrin is going to love the feeling of weightlessness in her body. We’ve wanted to get her swimming before, but due to her g tube and the risk of water getting in it and going directly into her stomach, we’ve had to pass up the opportunity. Spaulding has assured us they have the capability to patch the g tube site so that there is no chance that water can get through. Check out the Facebook page for updates!

Spaulding is a phenomenal and truly beautiful facility. The entire staff from the aides, to the therapists, doctors, to the nurses have been top of the line. The hospital sits directly on the Boston Harbor overlooking the Boston skyline. The halls are quiet and clean, unlike some other hospitals where we’ve spent time (looking at you National Rehab). We watch boats and ships go by all day and have truly made ourselves at home here. I feel like I’m at a beach resort!

Sherrin has also gained a new best friend, my boyfriend, Casey (yes, we have the same first name). He and I have been together for about a year and he has completely devoted

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Casey, Sherrin, and me in Boston

himself to Sherrin. He helps with her workouts and when he’s not with her, he texts her throughout the day just to see what’s going on. I really am blown away by how well they click. He and Sherrin have this sweet relationship where she calls him her “little bro” and he calls her his “big sis.” She lights up whenever he walks in the room and he tries to teach her new handshakes. I am truly so lucky to have someone like him who willingly took on Sherrin as one of his priorities. He treats her like an equal. And when Casey came to visit to Boston, Sherrin’s and I were eager to get our third amigo back.

I think the most exciting part of the Casey and Sherrin relationship is that she remembers him. Like I’ve mentioned before, Sherrin’s short-term memory was severely damaged, so anything that has happened since the accident often gets forgotten if it doesn’t get repeated. Sherrin has only known Casey for a year but she knows everything about him! She knows his full name, his home state, and that he recently finished law school. Casey told me he was determined for Sherrin to remember him, and I am so thankful he stuck to his promise. We love you, Casey!

We will be heading back to Virginia next weekend. Please check out the Facebook page for more updates and pictures of Sherrin during her last week at Spaulding. Peace, love, and Sherrin!

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First Update of 2016

It’s been several months since my last post; I apologize for anyone that has been waiting for an update. The reason why I haven’t been posting so often is because Sherrin’s injury has become my normal life and it’s hard to give updates on something that is just a part of daily life for you. However, there are a few new changes and things coming in the near future.

Sherrin practicing her balancing on the mat!

Sherrin practicing her balancing on the mat!

Sherrin will be getting a surgery next month on her feet. This will actually be only her second surgery since the accident. She hasn’t had a surgery since December 2012 when the Baclofen pump was inserted on her spine. Her feet are a huge part of her recovery process. As I’ve mentioned on here before a few times, something that often happens to brain injured patients is spasticity. This is when joints like ankles, wrists, arms, etc. are so toned that they don’t get the full range of motion and ultimately prevents patients from walking.

We’ve done a lot over the past 3.5 years to help with the spasticity. This includes the Baclofen, Botox injections, braces, and constant stretching and exercising. These options were all to avoid surgery, but they aren’t working as fast as we want. Sherrin’s feet are the problem. Her ankles are constantly pointed (think: Barbie doll foot). She can’t learn to walk if her feet aren’t completely flat. So, we decided to be more aggressive, and the aggressive answer is surgery. The surgery will essentially cut the Achilles’ tendons to release the ankles from the spasticity and toning. Sher will probably be in the hospital for about 4-5 days and the recovery time will be a few weeks longer. I’ve already taken off work for this (thank you to my job for constantly being the most understanding of my situation) and will be with Sher through surgery and the following days.

Sherrin practicing her balancing on the mat! [/caption]I’m looking forward to the surgery, I think it’s time to stop playing safe and have a ‘just freakin’ go for it’ attitude towards Sherrin. Sherrin is SO excited for the surgery. She thinks that it’s the solution to her immobility and will be able to start walking immediately. I remind her that surgery isn’t a quick fix and will take a while for recovery and rehab. She says she understands that but then I see her write down notes about her excitement. Oh well, might as well give her something to look forward.

As far as therapy, we’ve been working primarily on her core. A therapist told us that the best thing to help with independence is core strength for a brain-injured patient. We do core through several exercises:
• Laying on her back and doing 40 reps of hip raises, hold at the top for 30 seconds, repeat 2x
• Laying on her back, knees bent, opening and closing knees together (I call these clam crushers), 15 reps, hold knees together for 10 seconds, repeat 2x
• Sitting on the edge of the therapy mat so her legs are dangling over the edge with feet on floor, balance with no assistance for 10 to 30 minutes
• Laying flat and rolling, 2x on each side
These exercises WORK!! Her core is so much stronger and she can sit up on her own for up to 20 minutes at a time. The progress on her mid section has made Sherrin so much happier because she can feel the difference. You go girl!!

Sherrin and I on Halloween as Mario Kart

Sherrin and I on Halloween as Mario Kart

The past several months to year, I’ve been educating myself on brain injuries and disability rights. I try to keep up to date on research and learn about other people’s stories. It’s been comforting to know my sister isn’t alone in the hell that is brain injury, but it’s even more comforting that more and more people are starting to care about brain injuries thanks to new legislation and box office movies such as Concussion (if you haven’t seen it, I highly recommend). Part of the reason I write this blog is to talk about a topic that I’ve noticed wasn’t talked about in everyday conversation. I like to think that maybe I’m helping even one family out there because lord knows I could have used as much information as I could back when they accident initially happened.

What I’ve noticed in the majority of what I’ve been finding in my research is that a lot of brain injured people, and ESPECIALLY the type of injury my sister has (Diffuse Axonal Injury or, DAI) is that they are often frustrated with their injuries and easily become angry, making them not want to go to therapy and improve.

Sherrin through the years at home

Sherrin through the years at home

What sets Sherrin aside from what I’ve been reading is her determination. That girl is a fighter. Her therapists constantly say it, but I’m starting to notice it too. The other day I was working with her wrists and telling her what exercises to do in a certain order (trying to get both muscle and memory rehab in one exercise). She was doing an amazing job. I grabbed her cheeks and said, “You’re there, girl,” and I pointed to her head. I then pointed to her wrist and said, “And you’re THERE, too.” She smiled at me, so proud of herself, but then points to her feet, “But I’m going to be there, too.” That’s one example of what I’m taking about that makes Sherrin different than the majority of brain injury patients. That determination… How does she do it?

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An Update from Dad

An Update from Dad

Sorry I have been so late in providing an update to Sherrin’s web site.  Kaci has done such a really unbelievable job in telling Sherrin’s story.   My primary goal in providing input to Sherrin’s website was to help other families fight through the system and get the best possible medical care.  Frankly, I have learned that the medical system is broken and if you do not fight for your loved one she will not recover to the maximum extent possible.  That has been my single focus since Sherrin was injured.  We have had to fight to get the care she deserves and, in each and every case, we have come out on top.   Because Sherrin was a student and without an income she was authorized MEDICAID and we had to fight that battle.  When it was all said and done Sherrin was finally given the 8 hours a night of nurse’s aide support she is authorized under MEDICAID.  That fight took a teleconference between the MEDICAIFullSizeRenderD rep in Richmond, the insurance company that administers Medicaid in Virginia, Sherrin’s health care providers and representatives from our local Congressman’s office.  What we discovered is that the insurance company hired by MEDICAD improperly reviewed her file and I had to raise a stink for them to reverse themselves.  They eventually did.  MEDICARE is essentially as incompetent as MEDICAID.  What makes it worse is that the rehab facility that Sherrin was going to would not challenge MEDICARE after I presented it with the most recent legal decisions, the appropriate citations from the Code of Federal Regulations, and letters of medical necessity supporting my contention that Sherrin requires skilled therapy for her continuing recovery.  With all this information they still discharged Sherrin.  Why would they not support my claim that Sherrin requires skilled therapy?   It’s simple; if the rehab facility agreed with me and submitted a waiver request for continued therapy to MEDICARE it could take as long as 500 days for the appeal to run its course.  By denying the care the rehab facility does not have to undergo this appeals process and continue to provide care when there is a chance they may not be reimbursed.   Luckily, because of my military status (retiree) and Sherrin was a student at the time of her injury and my dependent I was able to get her into Walter Reed Military Medical Center and she is receiving wonderful medical and rehabilitation support.  The differences between Walter Reed and the civilian health care community are staggering.

Durable Medical Equipment is an ongoing fight.  Because it has been over two years since Sherrin’s accident she has been moved from my insurance (TRICARE) to MEDICARE.   One day under TRICARE she was authorized a particular piece of equipment and the next day she was not because she rolled over to MEDICARE.   Even though TRICARE is a secondary insurance to MEDICARE it will always default in favor of MEDICARE.   When you are authorized a particular piece of equipment it is so expensive that it is ridiculous.  Typically, the company providing the medical equipment inflates the price so high they can make a profit when MEDICARE cuts the price of the equipment in half.  We just got Sherrin a motorized wheel chair and the bill was $30,000.   Ridiculous!  Frankly, everything about MEDICARE can be characterized as incompetent or fraudulent.

I have researched the different brain injury associations and they are OK, but do not really provide much benefit.   They cannot answer the hard questions and do not have the details necessary to give an intelligent response.   When I asked them where the best brain injury rehabilitation centers were in the United States they responded with the 16 “model” centers.   I explained that I had researched them all and had traveled to 8 of them and came to the conclusion that they were not “model” at all.   After a bit of dialogue they all admitted that they had not inspected these centers and were relying on word of mouth.   When I asked for help in finding rehabilitation services in Northern Virginia they could not respond.  The Brain Injury Association of America told me of a study that they were help funding on the long term effects of skilled therapy for the brain injured.  When I heard of this I was ecstatic.  But, when I talked to the Doctor who was leading the study he told me that the results would not be released for five years.  Not much help at all.

In January, I visited our local Congressman at her office in Washington DC.   I explained to her that Virginia was ranked 48th in the US for treating TBIs, that Virginia MEDICAID sends its more severe TBIs to Massachusetts rather than caring for them in state citing insurance issues, that both the companies administering the MEDICAID and MEDICARE

Sherrin and me on the Old Town Alexandria Water Front

Sherrin and me on the Old Town Alexandria Water Front

insurance plans in Virginia were incompetent, and that it was fight each and every single day to get the support your loved one is authorized.  She listened attentively and was shocked with what I told her.   I am very glad she took my call and has the information on the brain injury situation in Northern Virginia.  Hopefully, she will be an advocate.

So, what do you do?   The answer is simple—fight!  You have to work harder than the bureaucrats running the program.   Let me give you an example.  When Sherrin first was injured I was told by her case worker that she could only go to an acute facility and when she emerged back into consciousness she could go into rehab.  If she stayed in a vegetative state she would stay at the acute facility.  She further told me that Sherrin was not ready for Shepherd in Atlanta or National Rehabilitation in Washington D.C.  She provided this guidance without ever coordinating with either facility.  In fact, she had never been to either facility.   National Rehabilitation is less than 20 miles from the hospital that the case worker’s office is located and she had never taken the time to visit there.  Not accepting this guidance, I was able to get Sherrin into National Rehab and her recovery began.  One month later I went to Shepherd and discovered that they would have taken Sherrin in immediately.   What the case worker did not know or cared to find out that the first few months after a brain injury are the most important.  If Sherrin had gone to the acute facility, as recommended by her case worker, she may have never emerged back into consciousness.  Frankly, this case worker is indicative of what we have witnessed throughout this journey.  The lesson learned for us time and time is to question every decision.   Do not depend on the medical community.  If you do you will likely not get the care your loved one deserves.  As far as this case worker is concerned I hope there is a warm place in Hell for her.  How many other families have followed her guidance to the detriment of their loved one?  I will never forgive her.

The good news Sherrin is thriving and continues to recover.  I took her down to Richmond in February to meet with a noted neurologist who focuses on brain injury.  His comments to me was that he wanted to take Sherrin on and that she has unlimited potential for further recovery.  This would have never occurred without the care Sherrin has received from her Mom and Kaci and my challenging the recommendations of the medical community.  Mother’s love is essential.

The problem with the medical community for the brain injured is that it is uncoordinated and skeptical.  The Doctors are highly trained, but are limited to the time they can devote and the time available for the patient to receive care.  They also do not think out of the box and explore alternative treatment regimens.   If you believe the brain is an organ and that it can be fertilized then why not use neutraceuticals to stimulate the growth process? From the day we put Sherrin on neutraceuticals until now she has not been sick, has been very healthy and alert, and continues to thrive.  With the exception of one noted neurologist all others have been skeptical.  One even stated that it was merely “expensive urine.”   Sherrin’s recovery supports the need for neutraceuticals.      Finally, from a business perspective the term “treat and street” comes into play time and time again.  Hospitals are out to make money.  It would be foolish not to recognize this.  What is important is that if you have done your homework and know what is authorized for your loved one the hospital will likely yield to your requests.  But, you must be prepared to fight and you must do your homework.  To accept the first recommendation that the medical team provides you may not be what is in your loved ones best interest.   Always get a second opinion.  Finally, if you disagree fight for what is best for your loved one.    You have nothing to lose and everything to gain.

Sherrin’s journey continues and we will continue to fight for her. The best news possible is that we have her back and she continues to get stronger and improve.  For those medical professionals that helped her along her journey we will be forever indebted.  For the bureaucrats we look forward to the next fight!

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On to the Next Phase

So this is where we stand with Sherrin’s body.

When the accident happened, Sherrin hurt her head, but she broke her collar bone too. Obviously, there was extremely little attention paid to the collar bone because we were so concerned with her brain. There were times when we forgot about it altogether. Now that we are no longer in the ‘life or death stage,’ we can bring our focus to the collar/shoulder.

An XRay of Sherrin's collar bone.

An XRay of Sherrin’s collar bone.

An XRay of a normal collar bone that I found on Google

An XRay of a normal collar bone that I found on Google

Turns out the bone never healed. The bones actually healed on top of each other, which you can actually see when you look at Sherrin. She never really complains about it, so it’s easy to forget, but I can only assume it’s very uncomfortable and painful. The only way to correct this is to re-break the bone (aka surgery). It’s just something we keep putting off because there are so many other gophers to hit. Plus surgery will only cause a rippling effect of other problems and pause her therapy sessions for at least a few weeks. So at the moment, the cons outweigh the pros for the surgery.

Sherrin has been writing a lot, probably for the past month or so. Sherrin is right handed, but because her left side of her body is significantly stronger than her right, she’s had to teach herself to use her left hand as the dominant one. She writes all sorts of things. She dates every journal entry at the top and the body of each page ranges from what she did that day to what she wants to accomplish in therapy. It’s so amazing! And her handwriting has been improving substantially. At first her journal entries were illegible, but now I can read everything she writes. I ask her why she likes writing so much, and she just says, ‘So I don’t forget what happened.’ This is her essentially training her brain to hold short term memories again. Ah, she’s so great!

I try to take Sherrin out once a weekend. A few weeks ago, I was able to take her to her friends Amanda and Matt’s wedding. The wedding was luckily in the northern Virginia area so it wasn’t too much of a trek. My parents were a little nervous about me taking her just because she gets exhausted so easily, but I kept insisting that she needs to do more ‘normal’ things where she’s around groups of friends vs me taking her to the movies where there isn’t that much stimulation. So, we went, and I’m so glad we did. We could only stay for a few hours just because it was so hot for her. (Reminder: Sherrin’s body temperature is very sensitive. A combination of a heat injury from when she was 12 years old + a weak immune system makes her not able to stand wide ranges of temperatures. When you or me are warm, she’s hot. When you or me are a little cold, she’s freezing). But she had such a great time seeing something so special for such good friends of hers. As soon as we got home, she asked for her journal so that she could write down what just had happened. Thank you Matt and Amanda for inviting her and allowing me to tag along!

Switching gears:
I wanted to share something that I’ve come to be more open about in the last 6 months:
my emotional journey. I know a large audience of this blog is for those dealing with a TBI, whether it’s themselves or a loved one. So to create more of an understanding of the mindset of one caregiver, I’ll break up my emotions into 3 phases.
Phase 1: An Emotional Wreck. 0-6 Months after the Accident 
I remember there was this one day when I was at NRH with my family in July 2012, about 6 weeks after the accident. My vulnerability level was at a peak. It was an extremely hot summer day in DC and I came to the hospital after a long
Massaging Sher's foot

Massaging Sher’s foot

day of interning. I remember going to the hospital cafeteria with my mom. Being a vegetarian, I didn’t have a lot of options when it comes to dinners at the cafeteria. Not trying to eat the burnt pizza for the 3rd day in a row, I opted for the refrigerated veggie sushi. I remember taking one bite into the roll and was instantly grossed out. I thought to myself, “How dare the cafeteria people allow such nasty food in here? This is a hospital, the least they can do is provide half way decent food.” I started to tear up with how offended I was to have this disgusting sushi. I tossed it out and bolted out of the cafeteria. On the way out, there was this Coca Cola ad on the side of the ice cream freezer. It was a picture of young, happy looking people smiling with their drinks. I was instantly upset again. Why the hell would someone allow advertisement of people looking happy in a HOSPITAL cafeteria? This is the least happy place in the world. I completely lost it and bursted into tears while dashing for the next elevator so no one could see my puffed up face.

This is just one example of dozens of me being depressed and overly sensitive. I was dealing with the idea of losing my sister that I felt like my emotions were opened up like Pandora’s Box. I cried nearly every day. I cried moments after waking up every morning after being reminded of what hell I was living in. I cried when I went to bed because I didn’t know if the next day was the day my sister would die. Everything hurt all of the time. Every news I heard, good or bad, made me lose it. It was the weirdest experience going from a happy go lucky 20 year old to a deeply depressed woman in such a short period of time.
Phase 2: Not Having an Emotional Bone in My Body: 6 months – 2 years after the accident
My emotions did a 180 from being overly sensitive to feeling nothing. I went numb. I just felt that everyone’s news in 11174822_583927505043385_3760889450738200649_ntheir world wasn’t important and didn’t matter. A friend told me that her grandmother was diagnosed was breast cancer. I told her that I was sorry, but in my head all I could think was, “At least society gives a damn about cancer. At least your grandmother has a disease that is treatable. Do you know how many organizations there are to treat cancer? People don’t care about brain injuries. Hell, aren’t we all going to get cancer one day anyway? I can’t feel bad for your grandmother because its just inevitable that she was one day going to get cancer. Also, how dare you frame this situation as something that’s heart-wrenching to you. Do you not see what my sister has to deal with? You’re weak.”
I think the reason for my lack of empathy was that I was sucked dry from emotion. I felt every feeling a human can possibly have in one month. Deep depression, anger, pure joy, hope, despair, pain, more pain, humor, sympathy, aggression, and even more pain. It was a tornado of feelings followed by a serious ‘calm after the storm.’ And the thing was that I didn’t realize it was happening until it was over. I thought that this was my eternity. That this was the element of strength that everyone on the planet was telling me to find.
Phase 3: Content: 2 – 3 years after the accident 
I’ve had to accept a lot of things since the accident. I had to accept the idea that my sister will never be the same, that she will have lifelong disabilities, that I will never have nieces or nephews, and that I will be her primary caregiver in the next few years. They were tough pills to swallow, but I did it. Once I fully accepted reality, I realized I could find happiness. I’m no longer longing for a different outcome and wishing for all of this to go away, but now I’m making the best out of the situation (at least as best as this can get). And what I realized was that when I’m happy, Sherrin feeds off my energy. And when she’s happy, she’s stronger. I’ve had more happiness in the past year than I’ve had since the accident 3 brutal years ago, and guess what? So has Sherrin. I’ve mentioned on here several times that I’m crucial to Sherrin’s recovery, but I’ve slowly begun to understand that I am the most influential person on her. Again, it’s hard a weird idea to grasp how important I am to someone, but I’ve accepted it, and now we can look forward to having a happy life together.
I feel content. I’m as happy as I can be. Sheryl Sandberg put it in a good way while discussing her emotions on the death of her husband, Dave Goldberg. She says it’s more comforting to know that she will never be as happy as she was when her husband was alive, but things can get ‘better’ vs believing that everything will be ‘okay.’ It’s true. I know that my life will never be as happy as it was when my sister was an able-bodied person. But to accept the reality and coping with the situation bring me peace.
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Why You Should Give a Damn about Traumatic Brain Injury Awareness Month

March is Traumatic Brain Injury Awareness month. For the general population, it’s just another month where people may pay a little more attention to an issue, maybe donate $5 towards, or to not care at all about and wait for the next big philanthropic event. I’m not asking you to devote your life to this issue because in reality most people will never be affected by a TBI. I’m just asking you to be aware, to think a bit more about so that you aren’t so blindsided and heartbroken when a TBI does affect you.

Sherrin at Starbucks March 2015

Sherrin at Starbucks March 2015

That’s something I’ve learned through this 3 year journey (woah- it’s been that long). Most people don’t know the first thing about head injuries and mental disabilities. Why? I have no idea. Millions upon millions of dollars go to other causes like breast cancer, Alzheimer’s, whatever, but for some reason TBIs are just not a big issue to most people. I am not discrediting any of the other issues at all, I just truly believe that maybe if my family and I were a bit more familiar with TBI awareness, then maybe we would have known what to do when it happened to us. Maybe we would have made better decisions with my sister’s care, maybe there would be more government funding towards TBI victims, maybe the shock of it wouldn’t have hurt so bad, maybe my sister’s journey through her TBI wouldn’t have to be so painful.

That’s why Traumatic Brain Injury Awareness month matters. It is for people to be aware

Sherrin in her standing machine March 2015

Sherrin in her standing machine March 2015

of an issue that doesn’t get half marathons, bake sales, and raffles every week across the globe.

So, for the sake of your awareness on this issue, here is another update in the world of a TBI victim:

Sherrin has made more progress in the past two months than I have ever seen. It makes me want to cry. I am so proud of her. God, where do I start?

Her body: She is FINALLY moving her right side! Brief reminder: the left side of your brain controls the right side of your body. Sherrin hit the left of her head when she was in the accident (probably from smacking it on the driver’s side window), so her right side has been incredibly more sluggish than her left. That’s also why her smile doesn’t really go up on the right side of her mouth. She hasn’t really been able to do much more than move her thumb and index finger on her right hand and kick out her right left about 3 inches for the past 2 and a half years. We’ve stretched her limbs a good amount, tried some weight bearing, but nothing has been incredibly progressive.

I really can’t describe what it is, but something has gotten into Sherrin where she wants to try more, wants to push herself, and I’m feeding off her energy in order to motivate her. When I work with Sherrin, I sound like a drill sergeant or one of the moms on Dance Moms. I scream at her to move her body, saying things like, “Do you ever want to go on a date?! Talk louder!” or, “Do you ever want to dress yourself again?! Move that freakin’ arm!” or, “Move your legs! Your life literally depends on it!” And to my amazement, IT’S WORKING. Sherrin likes loud noises, she likes it when there’s a loud battle scene in a movie or when I yell up the stairs for my dad’s attention, which is where I’ve kind of gotten the idea to yell at her when we’re doing therapy. When I’m yelling at her, she starts cracking up but then pushes her arm or leg a solid 7 inches down. She couldn’t do this a month ago people!

I’ve tried a lot of occupational therapy with her too to make her feel more normal. When I give her a bath, I give her the wash cloth so that she can wash herself. When I have to turn her over to change her diaper, I make her turn on her side without my help. When I change her clothes, I make her put her own arms through the sleeves and pull up her own shorts. She likes this, she feels more independent.

Her mind: That girl is THERE. She knows what’s going on. She listens to the conversations around her and asks questions. She gets extremely frustrated when she doesn’t know what we’re talking about, so she pokes my side until I’ve explained it fully. I do a daily news briefing at the end of the day to explain current events to her so that she is able to understand what’s going on when CNN is on in the living room. I’ve been making her read one newspaper article a day and write me one sentence about she’s learned. Wow- I didn’t know what she was capable of, that’s for damn sure. She read one article about the Hillary Clinton email scandal currently going on and then texted me at least 4 sentences about what she’s learned. She texts things like, ‘the parties are bitterly divided,’ or, ‘this article is incredibly interesting and I would like a proper way to learn more about it.’ What? Who is this girl? Who the hell knew she could retain so much information?

I’ve learned that Sherrin is capable of so much more than I give her credit for, she just needs the motivation. She needs someone to tell her how amazing she is, how she’s beaten every odd thrown at her, how she will be able to walk and talk again one day.

Sometimes she’ll tell me she wants to be normal, doesn’t want to be in a wheelchair anymore, and that she’s depressed because she doesn’t have any friends. This is where my daily motivational talks come in. I say, “Sherrin, you are not normal, you will never be normal again. This is because you are extraordinary, and extraordinary people don’t live normal lives.”

Whenever I say this, she purses her lips, sighs, says, “I’m inspired. Thank you, I love you,” and keeps fighting her fight.

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Finding Peace

One of the aspects that have come because of this blog is that a lot of people confide in me about their pain. Friends, acquaintances, strangers who stumbled upon the page, TBI survivors, other caregivers, all sorts of people have reached out to me to ask how I deal with my pain. The truth is, I have no plan. I’ve never had a plan. It’s not like you go through life carrying around an emergency backpack of how you’re going to mentally get through something if nothing bad has ever happened to you before. Crap is thrown at you when you’re least expecting it, and from there you come up with a strategy.

Let me start out with where I was mentally before this hell began. Pre-Sherrin, I was a very care-free and happy person. I had never really gone through a tragedy. I mean sure, I had grandparents, other relatives, and some friends of friends pass before, but none of it was really a tragedy that really shook me to my core. I never thought that bad things could happen to me.

I think this is why the accident caught me so off guard. Here I was, a normal 20 year old college sophomore who didn’t have too much responsibility other than getting through school. Then Sherrin happened. I had to throw my carefree personality out the window and swallow reality: and the reality was that my sister was dying. I just couldn’t fathom that I might be one of those people that would lose their sibling or that my parents would be one of those parents that lost a child. It felt as if life punched me straight in the throat without any warning.

When the accident happened, I lost myself. I didn’t realize it has happening for a few months, probably because I was numb to all thoughts other than wondering if my sister was going to wake up. I didn’t really find myself again for about two years. I cried at least a few times a week, mainly from stress of not being with Sherrin all of the time. Every decision I made

:)

🙂

I thought was wrong. If I wasn’t spending time with Sherrin or helping my parents, I felt guilty. People would tell me not to feel guilty because I still needed to have time for myself, but I couldn’t help it. The guilt consumed me. And the time that I was with Sherrin I felt like I was wasting my youth. I just wanted to be a normal college student again who went out on the weekends and hung out with friends after class.

Everyone saw this. Everyone around me knew about my stress and my guilt. I wasn’t that fun person anymore. I was angry that I couldn’t be a normal college student and I was frustrated that I couldn’t dedicate all of my time to Sherrin. I just couldn’t win; something always had to give.

My guilt dwindled down when I moved home after college to take care of Sherrin. Not because the fact that I’m there is making things easier, but because Sherrin is happier because I’m there is making things easier. Sherrin and I are extremely close and we make each other incredibly happy, so when she’s happy, she tries harder… and she gets better. Seeing Sherrin’s progress from the time I’ve moved home and now brings me peace. I finally feel like I can maintain a balance, with work, friends, and being with Sherrin, which is why I feel strong enough to write this post now. I’ve been living at home for about 6 months, and when most people say moving back in with their parents is annoyance and they miss their freedom, I finally feel like I can be myself again. I feel freer than ever.

A good friend of mine recently told me, “You’re finally coming back, Kac.” This is a friend that was there before the accident and was there through all of the horrible aftermath. Her saying that I was coming back made me realize that I am coming to peace with myself- that I’m finally figuring out my equilibrium and that everything isn’t so miserable. If you can’t tell from some of my initial posts on here, I used to see the world so darkly. Now, not as much.

So my answer as to how I deal with the pain? Time plus Sherrin’s happiness. It took me a while to realize how much I contribute to her progress and the fact that I can now be there for her all of the time adds to her happiness brings me strength. You can get through nearly anything with time.

I hope for those that read this post for trying to cope with their own tragedies find something useful in it. I can’t say that this is a universal full-proof plan of coping mechanisms, but it’s worked for me.

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2.5 Years In, A Million To Go

Exactly 2 and a half years ago, I was sitting in a small ICU room gripping my parents’ hands trying to make sure my sobs weren’t too loud. My sister’s brain was swelling at an alarming rate and any extra stimulation (i.e. noise or light) might have killed her. No words can describe the fear I had on May 13, 2012. I can without a doubt say that 2 and a half years ago from this moment was the worst day of my life.

Today, I woke up and helped my mom get Sherrin ready for therapy at Mount Vernon Hospital in Alexandria. I put on her arm braces, brushed her hair, told her how freaking sexy she looked, and buckled her into the wheelchair van. If you told me on May 13, 2012 that in exactly 2 and a half years from now that my sister would still be alive and that she would be able to talk to me and give me hugs, I probably would have fainted.

1797411_10203389683444603_1422941320890255081_nI recently have been back at Inova Fairfax Hospital (the first hospital that Sherrin went to) this past week because of my grandpa. He has been battling cancer for a couple of years now and has been recently having a lot of difficulty. I went to visit him Monday afternoon and was told he was in the ICU. If you have ever been to Inova Fairfax Hospital, you know that place is so confusing. There are 8 buildings attached to one another and different elevators take you to different floors and it takes about 5 minutes to get completely lost.

However, for me, my muscle memory kicked in and I knew exactly where to go to get to the ICU. Go in through the women’s center, take a right under the escalators, left, second right, go all the way down and it’s on your left. This was the same place that I was told that my sister was probably going to die. I looked at this one particular corner in between the old waiting room and the emergency doors where I had my first panic attack. I remember it was right after the doctors said that Sherrin might have had a stroke in her brain stem, and if that were the case, she would have been brain dead, and if she were brain dead, she would not come back to life. I remember sitting in that corner calling my closest friends and screaming with fear. I remember sitting in the fetal position on the floor and dry heaving until a random man said that whatever it was, “It was going to be okay.” I normally don’t get all mushy gushy over sentimental locations like this, but just looking at that corner overwhelmed me. The only way I can describe it was like watching a movie of myself.

But, enough with the emotions. I don’t know if you can tell by keeping up with this blog over the past couple of years, but I have hardened a lot with my feelings. I guess this is what they mean by ‘staying strong.’ FYI, people don’t mention that when you go through a traumatic situation you tend to be more selective of what you put your feelings in. It’s weird.

Sherrin is doing phenomenal. Her biggest progress within the past 2 months has been predominantly her mental capabilities. She remembers tiny details of something I mentioned in the morning, she remembers what day it is, and she asks more complex questions. Sherrin’s mind is progressing faster than her vocal chords, which is why it’s so difficult to understand her sometimes. Cue a beautiful piece of technology called an iPad. Sherrin types paragraphs of her questions and sometimes (most of the time) they are so unbelievably funny. She types her demands, which normally sound like, ‘I want my hair up,’ ‘put make up on me,’ ‘pluck my eyebrows, or ‘I want to wear cuter clothes.’ Her being aware of what she looks like is a big step. She can recognize that she didn’t always look this way. If you knew Sherrin pre accident, you know that she had killer eyebrows and always had her eye make up to perfection. Now, she wears mostly gym clothes and one streak of eyeliner (it’s so hard to put it on her and then put make up remover on her later, that’s why we don’t do it all of the time) and she hates it! When she’s really cranky I tell her to 1797384_10203327180402066_5989326884320683328_nput it on herself, and she tries!

She’s been trying to jump out of her wheelchair a lot recently, which is good but terrifying. She figured out how to unbuckle herself and uses her legs to pull herself out of the chair. We’ve had to put the buckle to the way side of her lap so she can’t reach it. If we keep her unbuckled and walk away for a minute, she could seriously injure herself, the unfortunate reason why we have to torture her like this. I tell her that she will only be unbuckled if she’s able to get up and walk by herself. She gives me this devil stare but then I make her laugh and everything goes back to normal, except for the fact this happens every 20 minutes.

We have completely stopped using the sling to get Sher in and out of her bed and chair. I have got to say, my arm and back muscles are stronger than ever lifting her 115 lb, 5’0 dead weight body when I’m about the same size myself. Since I know I can spot her completely on my own, I let her try to stand up without my help. I put my arms around her (it looks like I’m hugging her), dangle her feet over the side of the bed or chair, and tell her to stand up. I can feel her leg muscles pushing to stand herself up. She can manage this for a few seconds and then I do the rest.

I want to give a huge thank you to those that have been present during this entire experience. Over the past 2 and a half years, my family has lost not only so much of our sanity, but friendships and family members who don’t reach out any more. Hardly any of Sherrin’s friends still keep in contact with me and I personally have lost some of my best friends because they don’t know how to deal with this (news flash: neither do I). But for those that have chosen to remain relevant, I owe you everything. You are the ones that make this journey easier, you’re the ones that give Sherrin something to look forward to, and there is no other way to express my gratitude.

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