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When You Go From Patient to Caregiver in the Blink of an Eye

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I always pictured my life to have a defining moment. You know, the one that you look back on and say “That’s the moment it all changed.” What I didn’t expect is that I would have several of those defining moments. To be fair, I think it’s that way for most of us, the moment it all changed, because it is always evolving and changing in some way. At least, I hope it is. If we stayed stagnant, never changing, we wouldn’t be able to handle it. I’m sure many of us feel like we face that daily, but what I am saying is, if we didn’t have these moments then our lives would have no flavor.

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At least that is what I tell myself. Why? Because the last 11 years of my life have been a Baskin Robbins of flavor choices.

I thought for sure the moment everything changed was the day I was diagnosed with Chiari malformation. I also thought the day I had my first brain surgery was that moment. To be fair, the second and third brain surgeries were also in the running for that moment. Or maybe it was the time I had to change my career because my health was failing. No, it had to be the time I found out my joints were dying. Wait, nope, no, it was when I had my daughter. Oh crap, no, it was my son. Yes, he completed our family. But what about that time I found out I couldn’t work anymore because of my health? No, it wasn’t that either, it was the day I said “they would be better off if I was gone.” Surprisingly, it wasn’t that either. In case you haven’t caught on yet, I have had several of those moments.

No the moment I’m thinking of right now, the current life changing moment, was the day my mom was diagnosed with stage 4 angioimmunioblastic T cell lymphoma. That was the moment I went from patient to caregiver in the blink of an eye. The moment where I couldn’t control anything anymore. When you are the patient, you can control everything. You can control your reaction to the news, how you let others see you, how you let everything affect you. But when you are on the other side, you feel powerless. It’s like life grabbed a baseball bat and took you out at the knees and you fell so hard and so fast you couldn’t breathe. That… that is the moment my life changed.

I had gotten so used to being on the other side. The side where things were happening to me. Where the pain was mine, and as long as it was mine I knew it was leaving someone that I loved alone. So I was OK with it. I wasn’t OK with that pain not coming to me, I couldn’t fix this. I couldn’t rationalize this news and spin it into some positive metaphor that we would carry through the storm. I couldn’t even breathe. I was choking to death on it.

My life quickly went from doctors appointments, medication changes, therapies, canes and walkers for myself, to all of those and more for my mom. My mom. The woman that carried me for the last 11 years of hell as diagnosis after diagnosis fell on top of me. As the life I used to know crumbled away. It’s crazy how fast life changes. How those life altering moments can hit when you least expect them. She hadn’t been feeling well for awhile but we thought it was a rheumatologic issue. I counseled her through her pain, gave her ways to focus on other things. I thought I was helping. It wasn’t until I found her doubled over in pain, covered in swollen lymph nodes, that I realized something wasn’t right. A trip to the ER turned into an admission. The admission into a biopsy. The biopsy into a sliding scale of tests and new normal. The diagnosis came. The next day the bone marrow biopsy which turned into a port placement and a first round of chemo. It all happened that fast.

In a matter of days, that pinnacle of strength and beauty was deteriorating before my eyes. My biggest struggle? It was how the heck I was going to adapt to life on the other side. I couldn’t take this from her, no matter how hard I prayed or tried, it was her fight. Just like the last 11 years had been my fight. No matter how hard she prayed or tried, she couldn’t take it from me. I saw the view from her side and holy crap did it stink.

Now we are going into our third round of chemo, almost nine weeks into this nightmare and I still have good days and bad. Because right in the middle of this nightmare I am living with her, my own health hasn’t changed. So I’m fighting for her, I am fighting for me, and I am fighting for my family. It’s a land of tears, pain, confusion and laughter. It’s my new normal.

When her second round of chemo was about to begin, the tears started. As this poison was about to enter her veins I just looked at her and said thank you. Thank you. Yup, I thanked her. Really cool thing to say to a woman in the fight of her life. I think she was going to smack me across the face. But when I finally explained, she didn’t. I thanked her for being my source of strength for the last 11 years, well truthfully the last 36, but don’t hold that number against me. The last 11 years of my life have been filled with medical issue after issue. When I wanted to give up or throw in the towel, she was there, ready to hold me and get me through, even though watching me go through this was killing her.

We often wondered why all of this was happening to me, and I have come to truly believe it was so I could be a light to others. I have this ability to turn the worst situations into positives. An ability that came from my mother. So these last 11 years, they made me strong enough to carry her through this. The strength she gave me, I saved it up, and I was cashing it in to hold her through this.

Life on the other side is muddy. It’s ugly. It’s a mirror of shattered pieces that show you bits of yourself you didn’t know existed. When you are a patient, you are forced to reach down, really deep down to find strength to get through your pain. The surgeries, the tests, the needles, the adverse reactions to medications, the looks from people wondering why you are parking in a handicapped spot… you can handle it, because its happening to you. I lost count of the amount of times I would say to my family that they would never understand what I really went through and I would get angry when they made it about them. But then, I fell through the looking glass. I saw what the picture looked like from the other side. The side where you feel helpless and scared. Where you see these things happening and feel powerless to stop it.

Here is what I have learned…

It doesn’t matter which side of the looking glass you are on. Your feelings are valid and you are allowed to feel them. The person on the other side is feeling something too and guess what, they are also allowed. No one can take your pain away just as you can’t take away the pain of someone you love. It’s something they must go through. The good news is, they don’t have to do it alone. You don’t have to do it alone. Patient or caregiver, it doesn’t matter. You are being dramatically affected by a situation and you have to feel your way through those emotions to strengthen your fight.

Life changing moments are happening every second of every day. The defining moment is what comes after the change. When you have processed and accepted the change for what it is and move forward. That’s when you can say it has defined you. No matter what the moment, let it define the good in you, the strength and beauty you possess. Let it shine your light so bright it can be seen from both sides of the looking glass.

Originally published: May 8, 2019
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