Tonight was a celebration at our kids school. Our daughter was set to perform some spoken word that she wrote herself. We are just over a week into Tash’s treatment now and as we stated previously, the pain is getting worse before it gets better. Today featured a pretty massive flare up for Tash. Severe fatigue, the brain fog and headaches she usually experiences and light sensitivity that has taken hold recently decided that today of all days would be perfect to raise to an elevated level. From the moment she woke until it was time for me to pick her up and go to the kids school, the pain was just intense. There are things that I just “know” when I see her. At any given moment, I can see the look on her face and gauge what level of pain she is in, or if she’s about to crash. When I got home to get her and the little one ready, I could see that she was not in a good way but she insisted. She wanted to be there for our kids.
“Our kids have suffered enough with my being sick. Let’s go.”
We made our way to the school and with her arm in mine, we began our journey up the walk through the parking lot. Immediately we were greeted by one of our friends that just so happens to have children that go to the school as well. She hasn’t seen Tash since before her new symptoms surfaced and without missing a beat, she goes in for an embrace. This wasn’t a typical “greeting” hug. This was someone supporting her. Compassion passing from heart to heart. This was the first time tonight where Tash broke down into tears. There wasn’t much else said other than asking how she was holding up as we made our way to the front doors.
Once we made it inside, that is when it began to overwhelm. Right now, Tash has to walk with me as her support when we’re out and about, and we followed our children to their classrooms to review the projects they’ve worked on. While walking to the classrooms we noticed that there were parents and students that would glance and do a double take at Tash while she walked. If you know my wife, you know she does not like being the focus of attention. With her ticks and her shaking, it’s difficult to not draw attention. Along with this, she has troubles with walking in general. Her legs don’t work properly and so walking also shows that there is something wrong.
After walking around the school to the different classrooms, ended up near the great hall where the performances were taking place. The school rock band was playing three carefully rehearsed songs that had the volume turned up to 11. This was not a good place for Tash to be. The band got their three songs in and it was time for our daughter to do her thing. I helped Tash into the auditorium in time for our eldest child to take the stage and give a great performance and then I helped Tash back out into the hallway to sit on a chair while we waited for our oldest to finish helping with the performances. Not to mention the boys wanted to stick around for a few more songs. It was shortly after that I got the text. “Is it possible for you to help me to the car? I’m sorry…”
We needed to get home. And sooner than later.
We made it home and while I began prepping a quick dinner for everyone, Tash came to me and that’s when something happened that hasn’t happened really in recent memory. At first I thought it was her allergies that was causing her to sniff a bit.
Sniffs turned to tears. Tears turned to sobs.
She began sobbing. Deep, heavy, sorrowful sobs. Through the sobs came broken sentences like “…my kids don’t deserve this” and “…I don’t want to embarrass them”. But it was the last one that really stuck with me:
“…I was happy”.
Everyone, these phrases aren’t cries for help. This isn’t depression. This is grief. This is the natural process of realizing that the life you once lived is not the one before you. I know 4 people with Chronic Illnesses and they have all said the same, that from the moment they got sick, things changed. And when you come to terms with the fact that though they can get better, things will forever be different… it’s humbling. You see, roughly 4 months before she got sick, Tash was the happiest I had ever seen her. She was glowing. She was feisty. There was a zeal for life that I had not seen in the entirety of our marriage. Sure we were happy, but this was happiness. Those who know that feeling know the difference. It’s distinct. And as we’re a few days away from the two year mark of her falling ill (April 1 will be two years), seeing the decline from then to now is heartbreaking.
While she was sobbing, I whispered into her ear “put your weight on me… rest on me” and I felt her body give into the sobs, her arms wrapped around me holding on tight. She needed this. Would it help her pain? No. Would it give her relief? No. But she needed it. After a few minutes of just letting her get the much needed cry out, I asked her if she needed to sit and she did. I led her to the bedroom where after sitting down, she just lost it again. “I was happy…” I kept hearing this in my head as she just unloaded.
Readers, the battle that this woman faces daily is fierce. She starts IV treatment in two days and we’re told it can take a few days to a few weeks for that treatment to show any signs of helping. All we can do is push through.
What I will say, from a caretakers standpoint is, as a pledge to her and to you, I will never give up. I will always take care of her. That woman is my world and she is the most amazing wife and mother. Even in her current state. I’ve never seen someone stare pain, sickness and fatigue right in the eye and tell it “No. You will not have my life. You will not break me.”
The wind has blown some hurricane force winds this woman’s way. And as our favorite poem “The Oak Tree” says:
“…The oak tree said, “I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You’ll never touch them, for you see,
They are the deepest part of me…”
This woman does not break. Sometimes, as a spouse… you worry. How much can she take? How much pain before she just can’t take it any longer? You face that fear with strength. You rely on your inner strength, each other, the thoughts and prayers of family and friends… you never lose hope. I focus on the triumphs over the obstacles she has faced over the last two years. I remember that I vowed to help her fight this no matter what. We’ve read so many other stories of people fighting this fight. Some won, some lost, and there are so many out there still in the thick of the fight.
She stands among them, sword and shield in hand… ready to continue the fight.