Okay, so on October 3rd 2018 I received a text from my sister Jillian that my
brother-in-law Mike was going to the emergency room via ambulance due to a
fever of a 106. He had been diagnosed with a kidney infection and
given antibiotics for treatment but when Mike woke up that day he didn't know
where he was, who he was, who my sister Jillian was, or who their 4 year old
son was. The fear that struck Jillian was unimaginable. Of course resorting to the
internet and the plethora of information that it brings we read that a high fever
could cause confusion so upon entering the emergency room
Jillian thought they would be given a stronger antibiotic and sent home later
that day. And this was actually that day when our journey began. Upon my
arrival to the emergency room Mike was asleep and they were running numerous
tests. Their first diagnosis was meningitis - the three of us were
quarantined pretty much and this is the first room that that they put us
in. Tests came back and meningitis was ruled out. At this time the doctors knew
at this specific Hospital that whatever was going on with outside of their scope
and it wasn't just a fever causing him to be now unresponsive. In an effort to
get him the best treatment possible the doctors recommended that he be
transferred to the neurological ICU in Charlotte, North Carolina. So on Mike's
38th birthday he was transferred to the neuro ICU and put on life support, and
this was that day. This is when our panic set in, and I think that everybody can
admit that the unknown is scary. Seeing the confusion on the face of the doctors
and nurses can cause frustration, fear, sadness, and for me it was anger. I didn't
like seeing him like this, I didn't like seeing my sister Jillian worried about
how she was going to tell her 4 year-old son that Daddy did not
come home from that doctor visit. Mike was diagnosed with viral
encephalitis, cause unknown. Encephalitis: the word did not mean anything to any of
us, we looked around and I think that day I looked up how many times how to spell
it. And to be quite honest it wasn't
something that the nurses saw often, some of them hadn't seen it ever before. To
this day he still has tests being run at the Mayo Clinic because this strain of
the virus is still yet to be named. The virus attacked his brain and his brain
stem, neurologists did not have many answers because it was a very
uncommon diagnosis here in the United States. They teleconferenced with doctors
all over the world and then they said the line that we've heard multiple,
multiple times, "it's a virus it has to run its course." They told us when his
body was done fighting the virus. he would come back to us. I remember many
times Jillian would maybe leave the room if we had to make her and force her out.
We said "nothing's gonna happen if you leave this room" and at one point I would
hold his hand and I would beg him to squeeze mine just to let me know he was
still in there and and to keep my hope alive. At one point I begged him to trade
places with me, because seeing my family and my sister in this amount of pain and
not being able to fix it was agonising. But in times like these the best way
that I found to cope and to help those around me is humour, and making everyone
smile and laugh. At one point we were all gathered in his hospital room and he was
still unresponsive, and my stepfather looked and said "hey Mike, keep it down
over there you're being too loud!" and I always said "stop trying to talk over me"
and things like that. To some it may be strange but the smile it produced from
Jillian and my mom was long-awaited. To this day I still ask Mike why he was
giving me the silent treatment for all those days. The day came of course that
he opened his eyes and this is what you're seeing here
my sister was in shock and understandably so excited. Of course, Mike
doesn't remember these days, he doesn't remember essentially the whole month of
October of last year, and this is where the fight got a bit harder. Mike hadn't
walked in weeks, he lost a lot of muscle, couldn't move his arms and couldn't
swallow. Yes, the virus started to exit but now he had to relearn tasks that
many of us consider second nature. He doesn't remember the weeks of people
stretching him out, moving his arms, using a machine to get him up in a wheelchair,
and that's what you're seeing here. But we remember, and I remember the
excitement my sister exuded when he opened his eyes. I remember the tears
that formed when he wiggled his toes. I remember the nod he gave our friend
when our friend said to him "you're gonna be okay." I remember the cheers when the
therapist sat him up, I remember telling him that my sister and I knew for a fact
that his doctor enjoyed expensive red wine and yachting case we
really ran out of things to talk about at that point. I think that's also when
the first eye-roll took place, which was a sign to me that my brother-in-law
was back. Maybe not how he was before, but that didn't matter. For the rest of our
lives we will never take a wiggle of a toe, a thumbs up, or a nod for granted.
After weeks of life support, a trach feeding tube, stretches, and days where he
couldn't do what he did just the day before, he was getting out of the neuro
ICU and he was going to rehab.
While his brain was trying to understand
what happened, why it had happened to him, and wondering if he'll ever feel the
same again. In rehab they have informed him that it would take about two weeks
to walk a few 100 feet with the support of a walker. With the support of,
with our support, the encouragement and love from family, friends, and his
biggest supporter, my sister, he knew it was time to push himself. He didn't want
to be the norm he wanted to be the exception to the norm and this
positivity I believe is what allowed him to walk the hallways without the support
of a walker within those first 2 weeks. And so this is
in the neuro-ICU, sitting up, and his first steps with the
walker while he was in rehab. And they took him to learn his everyday tasks, and
they put him in an atmosphere where when he got home, he would be able to reach up
and make coffee, he would be able to open the fridge and find what he needed. Mike
and Jillian and their 4 year-old son have worked for a year to become
accustomed to their new normal. It was a transition that none of them expected
but they took it head-on and fought every day. Mike experiences some memory
loss, an inability to concentrate in different situations, and frustration
that he can't do the tasks like he did before. Encephalitis welcomed itself into
his life, but he has vowed to never give up and never give in. My sister, as a
caretaker still deals with the trauma of it all, and again dealing with the
unknown throughout the process. The truth is there's a lack of encephalitis
education and preparedness. There were a minimal amount of psychologists that
understood his traumatic brain injury, which resulted in quite a search [for a doctor] who
understood this disease and was comfortable treating somebody who has suffered and
survived it. But this story and my excitement, I want to bring you
hope. So this is me on the left, my sister and Mike, we took him outside into the
the garden. This is him, he was pulling himself up
and really getting his muscles back. He now works out at home, and I apologise I
cut his head off a little there. And just last week, if you'll notice on my cookie
cake this is Mike and my son, they share the same birthday
and Mike's cake said "Happy 38th and 39th Birthday," because we had a lot to
celebrate this year. So I'm gonna stop sharing and just, a
few more things. Whether you're suffering from encephalitis, whether you're a
caregiver, a family member, a doctor, or researcher trying to find the most
suitable way to treat or prevent this disease: keep fighting, and don't give up.
You have support around you, we're here in the U.S. now working to help spread
awareness any way possible. And to those currently diagnosed that have survived
but are living with after-effects: you know the beauty of life, and the
preciousness of each day. So celebrate achievements because once again, if
anything my family learned, and many of our close friends learned: the importance
of a squeeze of a hand. Which may seem trivial to some of us but it's needed.
We're proud of you, we support you through trials and tribulations. And to
the caregivers, or the family members, and the friends: we know the fear and
helplessness you feel day by day but the little things, like the wiggle of those
toes, will give you more and more hope and please don't stop fighting and
pushing forward. Be assertive and ask for explanations, when you're unsure what the
doctors are telling you, ask those questions. I had a tendency to be very
pushy and I wanted explanations, I didn't want doctor language because nodding my
head and then sitting there saying, you know, "what did he just tell us?" was not
helping us at all. Questions are the only way to better understand what they're
telling us about our loved ones. Doctors: thank, thankful for doctors and
for everything they do and dedication to the awareness of encephalitis. My
hope is that the awareness spreads so every doctor is knowledgeable of the
symptoms, treatment, and aftercare. And finally, for the researchers and
everybody in this society: again thank you for welcoming me in, and I am so
proud to be part of the fight to spread this awareness, and keep researching
the causes, the treatments, and spreading education. Because all of us joined
together are building our future, and we have the motivation and dedication to
ensure that encephalitis is on the map, and I can
tell you personally just like Mike I won't be giving up, and I won't be giving
in anytime soon.