It’s been a while since I’ve been able to form coherent sentences. My brain, however, has been sending me all sorts of love notes.
Many times I have mentioned the amazing tribe of people who love me, but I have not really focused on my husband all that much because he does not like the spotlight. It has been extremely hard for anyone to understand what I go through especially him. I am sure he wonders why our life and plans have been disrupted like this. He has to be exhausted by the appointments, the medicines, the surgeries, and the constant management of this trainwreck.
He often says it is difficult to watch someone you love experience illness and pain and know there is nothing you can do. He has the front seat and sees me at my worst. He remarked to my doctor just the other week that “her 5 is a 9 for most people because she is tough, really tough.” It is a simple statement like that which makes me feel so supported by him. He will, however, agree that I laugh way more than I cry.We have some fun with the hand we’ve been dealt.There are times we seriously laugh with each other! When you have a brain that fires slowly from the disaster living there you can just imagine some of the hilarity that can come from it. Although it is when I am at my most vulnerable, or in great need, that I see myself in his eyes. I see him lost and confused about what he can do to ease my suffering. On two occasions this month my doctor said, “there is no other choice but to bring her to the ER to ease her suffering.” He suffers in a much different way when I cannot stop the train.
I’m bringing him out into the spotlight now because it was the other day when I woke to a wonderful surprise from him. It may seem like a simple act to most, but to me it was everything. Over the past couple of years I have really let my gardening go. My love of flowers shows when I am admiring the yards and planters of others. The people in my tribe have spread joy by giving me some great plants and flowers for my porch. I’ve always been grateful to have something blooming! On Sunday morning I woke up to coffee and flowers… flowers around my bird bath, flowers around my light post, and was shown even more flowers near my back retaining wall. They weren’t just random flowers either – there were all types that go well together. I would have chosen these flowers and plants myself. I was speechless and a little confused because I spent time outside in the Eno on Saturday and planting was not being done. All the planting occurred in the middle of the night when I was completely clueless. My husband donned his camping headlamp and dug, planted and mulched. (Note to neighbors: Nobody was being buried in the dark of night). He deliberately chose my favorite colors, and made certain that I would have plenty of blooming love over the next two seasons.
This speaks volumes to me. It is something he CAN do. My husband has made my heart bloom during a time when I often feel like there is an eternal winter.
The bolt has hit me before, but it has been well under control with meds, and took about a two year hiatus. I was going about my day and had a wonderful massage. I kept telling everyone that it was probably the best massage of my life. Who knew something so amazing would open the gates of hell? That massage triggered what is often called the “Suicide Disease.” It is called this because many of those impacted have either committed, attempted, or thought of suicide. During my massage the nerves were triggered and within an hour I was feeling the shock waves. It certainly was not the fault of my massage therapist (who by the way has helped me with my issues immensely), it is just more of my damaged brain reacting.
Trigeminal Neuralgia is described as the most excruciating pain known to humanity. It is characterized by episodes of sudden, explosive severe pain along the trigeminal nerve. It is typically limited to one side of the face and impacts a few different regions. I have atypical trigeminal neuralgia that sets up camp in my right jaw, teeth, gums, and lip and is relentless. I can barely talk or eat when I am hit like this. It may sound questionable to those who have never encountered this disease because it is certainly not common. You may want to brush it off and even scoff at the claim that it is the worst pain known to humanity. I’ve had children, meningitis, two spinal surgeries, three brain surgeries, suffered many issues as a result of the latter, and I can tell you it is an accurate claim! Medical professionals made this claim – not some person randomly attaching it to TN.
Unfortunately, this weekend was an attack like no other. I have never experienced it so profoundly. Not. One. thing could help me during this attack. I was buried under a mound of heating pads, pain meds did not make a dent in the pain, and I was left writhing and crying for two days. It would not let up so my husband, mother, and doctor said I was left with no choice but to head to the ER.
The ER doctor took one look at me and immediately ordered morphine and a mixture of other meds. It is important for those of us who face a beast like this to be understood and to feel true compassion. I am so thankful for doctors like the one who cared for me! He knew quite a bit about TN and was fully aware of the level of pain that presents with flairs. He even laughed and said, “I’m not even going to ask you to give me your pain level because I already know what it is.” My visit to the ER was exactly what I needed to do, but I am left with some after shocks even as I type.
I’m sharing my ordeal – my mess – for no reason other than to share a message! Here it is: If you know someone dealing with TN give them a big hug! Let them know you are there for them when they need it, and let them know you will help. Like me they may need soft foods, or soups until the beast releases its grasp. For those of you who suffer YOU ARE NOT ALONE! Do not give into the demons that tell you to give up. Find a support system who will be there to help. I know I am damn lucky to have mine!
My best friends (chosen family) do something very interesting each new year. They sit down together, take stock in their lives, and work to create good habits for that year. One of their habits (I really hate the word resolution) is to make a point to do something outside their comfort zone. Their thought pattern has rattled around my head since early January.
Just the other day I announced to my friend that I am boring. Of course her response was “you are anything but boring.” Ok so I may not be boring to the people closest to me, but I feel boring. Not the I’m going to run out and get a sports car boring, or I’m going to climb Kili boring. It’s not about shock factor or the you-did-what factor at all. It’s about challenging myself and making myself feel a bit uncomfortable.
Recently my family traveled to Washington, DC. We were having dinner in a great little spot that had a piano bar upstairs. While we ate we were serenaded by people singing karaoke in the piano bar. There were some incrediby talented people singing who must sing all the time, as well as a few who obviously do not need to quit their day jobs. I sat there joking throughout our dinner that I was going to try my voice at karaoke. My 12 year old and I began to mull over choices for my debut. Should I attempt Beyoncé, or stay with something less booty shaking? Perhaps Elton John would be more my speed, or something classic like Gladys Knight. Knowing full-well that it was just a hypothetical scenario we began to narrow down my choices. Tiny Dancer it was – seeing as how I frequently belt it out in the car! We both had a great laugh at the mere thought of me singing our beloved Sir Elton John!
“Next up, Sally!” I looked around very amused for the other person named Sally when my husband said, “You have been talking about stepping outside of your comfort zone and I thought you needed a little push.” Yeah, off a cliff!!! I was paralyzed. My daughter’s jaw was hanging wide open as I made my way to the microphone. What did I have to lose? Maybe a little dignity. I would never see another soul in this place again!
I’d like to say it was a drop the mic moment. It was awful. I did it though! I sang every lyric proudly. There were some claps and cheers, and NOT from my family. I. Did. It. Thanks to my husband I was exhilarated, and I showed my daughter (and myself) that it is absolutely OK to do something completely out of your comfort zone despite how embarrassing it might be. I did not feel at all boring that night.
Recently I stumbled onto the blog of a former co-worker and discovered that she and her husband had given up the comforts of “home” and purchased an RV. A couple of years ago they took it all over the United States and experienced some amazing things. Of course it wasn’t all glamorous and it was daily life…in an RV…with pets. The key here is that even though it is daily life there is some level of uncertainty. Low and behold they are heading back out for a new journey in 2016. I will be keeping up with their adventures and daily living.
Some message is being sent to me – I’m convinced of it. I happen upon the blog of someone I haven’t even thought about in years, and then I’m hit with the movie trailer for Whiskey Tango Foxtrot over and over again. The BFF and I had added that to our list of movies to see even before I began feeling this tug. I’m not talking about running off to Kabul like Tina Fey’s character, but I feel like I need to be experiencing something more. My personality is one where I need to have security, and know where I am going to lay my head at night. I am a planner, but I should be a little uncomfortable – Tiny Dancer uncomfortable.
I read an interesting article on Cosmopolitan about Shonda Rhimes. If you’ve been living under a rock – Shonda Rhimes is the amazingly talented creator behind Grey’s Anatomy, Private Practice, Scandal, and How to Get Away With Murder. In this article she suggests doing what scares you and celebrating daily. All of this is part of her new book, Year of Yes. Her words in this article are exactly what I am talking about, and what my friends set out to accomplish at the beginning of 2016!
I’m going to try. I can’t promise I’m going to succeed, but I am going to look for opportunities to step out of my comfort zone, do what scares me, and celebrate. My attempts may not equal setting off on the great American RV adventure, or traveling to war-torn countries. Singing my favorite songs in front of complete strangers may be more my type of uncomfortable. Whatever your speed, or your type – I hope YOU feel uncomfortable too.
Ok! I have a new favorite thing. I’m not one to pimp out products, but I also share something I love with all my friends. Having been in the marketing world for years, I know just how important word of mouth is for a company.
Corksicle. This thing is AWESOME. If my tumbler is as great as this you can pretty much bank on the fact the other products are too.
It is simply the coolest cup ever – and by cool I mean this thing keeps a drink ice cold for 9 hours. Well, that’s the claim! However, I have experienced longer amounts of time. It also keeps hot drinks piping hot for 3 hours! I am one of those picky people who cannot stand room temp water, or lukewarm coffee.
Corksicle tumblers are triple insulated stainless steel, and they do NOT sweat in the least! It also comes with a shatterproof plastic lid – totally important to klutzy me!
My youngest asked me if they have water bottles for her. She’s exactly like me (imagine that) and likes ice cold water. Of course I looked and there is a fabulous canteen! That sucker keeps a beverage cold for 25 hours. She can go from school to swim practice easily.
I could go on and on! Check out Corksicle for yourself. You’ll notice that the product line first started with adult beverages. You might find some pretty neat items there as well (wink wink).
“Liberty’s too precious a thing to be buried in books, Miss Saunders. Men should hold it up in front of them every single day of their lives and say: I’m free to think and to speak.”
Mr. Smith Goes to Washington (1939), Jefferson Smith
Recently we (minus one jealous undergrad) had the most incredible visit to Washington, DC.
I have long loved the capital of our country and have been able to visit a few times. We’ve also passed through countless times on the way to Baltimore, and I was surprised to learn my husband never had the opportunity to visit despite his father’s distinguished military career. Of course my wheels began to turn, and I started making plans!
The chips fell into place. Red was out of school, we were already heading to Hopkins so it was a perfect time for a stop in DC! I was incredibly lucky to find a great place on Airbnb. If you haven’t heard of Airbnb I highly recommend learning more about it! I uncovered the most fabulous find; my entire family was ecstatic and in awe of this little apartment gem. We were mere steps from the Supreme Court, the Library of Congress, and the Capitol. It was wonderful.
The absolute best part of our trip was catching up with an old high school friend, Mr. Brian Summers. Brian has been setting Washington on fire with his talent! We never expected our personal tour of the Capitol to be what it turned out to be. It was because of Brian that we had the inside look of a lifetime!
Being a historian, Brian was able to tell us great stories about the building of the Capitol, the abolition of slavery, and other monumental times in American history. He showed us things that gave us chills and mesmerized us about our country’s leaders. Some of his accounts were things we learned in classes, while others were amusing stories that are sometimes heard.
He took us behind the scenes through the halls of the Senate and Congress.
The two things that really took my breath away, and caused me to really pause: Standing on the floor of Congress, and being where the President stands while waiting to go out to take the oath of office. No unofficial pictures are ever allowed on the Congressional floor, so we turned over our phones/camera to experience what we’ve only been able to see on TV. It was truly profound. I looked at the seats, the large desk where the speaker sits, and all I could think about was the history that has been made. It’s humbling to think about the speeches that were delivered from that podium, and the great men and women who occupied this room. You could not leave that place feeling anything but proud and patriotic! Red was able to take the walk each President has taken before delivering the State of the Union (and, by the way, we each were handed a copy of the recent SOTU remaining from the evening of the speech). Everything experienced was beyond anything a person can learn from a book; we were ALL students that day. After heading into one of the private cloak rooms, Sarah was determined to be a member of Congress after seeing a freezer full of ice cream! The excitement and enthusiasm was palpable.
Brian showed us an incredible view beyond the arch of a small breezeway – it is where Presidents stand as they await being inaugurated. We were told about President Obama having to take a moment to just breathe, and to take in all of the 1.8 million people who were there for him. Now I do not care what your political views are about any President -you have to admit it is awe inspiring. To stand where Presidents stood before their first day of office goes beyond any political party!
Our last day started with another inside look at the old Senate and ended with us on the balcony of the Speaker of the House.
What would a trip to Washington be without visits to the White House and monuments? It was especially inspiring that we were able to visit the Dr. Martin Luther King, Jr. memorial on the holiday honoring Dr. King. As we stood in front of each great statue and memorial we were humbled by the words and the reasons behind them all.
We braved extremely cold days and frigid nights! Of course, the time we finally get the opportunity to visit it happens to be the coldest days of the year, and a massive winter storm was lurking. Nevertheless, our time exploring our nation’s capital far exceeded any and all expectation. We will be back to take in so many other aspects we could not fit in this trip! For a first visit to Washington, DC, my husband and youngest daughter were treated to a monumental tour.
“Faith is taking the first step even when you don’t see the whole staircase.”
Dr. Martin Luther King, Jr.
I’ve entered a new phase in the brain game. I passed go and won two new doctors on my team. I’m building quite the team of amazing professionals.
For this phase in the game I have been introduced to many painful needles, and 22 pages worth of questions about my surgeries, pain, and daily living. Part of me wants to get really creative with the answers – sarcastic, biting, and irreverent – too bad they need serious and accurately dull. If I have to experience all of this I should at least be entitled to a little bit of fun.
I am pretty happy with the new medicine that was prescribed. I have never been able to say I actually see change, and even though it is a small change it is very significant for me! It’s been three months and I have not experienced stroke-like symptoms! Since that was the scariest thing for me a great deal of anxiety has also been lifted. Being with some of the top physicians in the world is making a difference and I am lucky to have them on my team.
So, the brain game continues to send me on 7 hour road trips, and provides me with great conversations along the way. I am rewarded with some of the best crab cakes in the U.S., and an occasional death by chocolate. I fight and race against snow storms, but manage to make
lemonade out of the lemons snow cream out of the snow. I’m going to keep playing the game because eventually there has to be a winner and I am a hardcore competitor! My brain may be winning for now, but I plan on shutting it down!