*Last Entry; only 4 days recorded in my journal, and it remained unfinished.
Day 1 “What If”
Why do we plague ourselves with this simple phrase and question of, “What If?” It is like self-inflicted torture for me. As an overthinker, it is the worst question to ask. It immediately feels like a file cabinet that is open and facing me, inside are the file folders, all tabs each containing a different subject. You could also think of it as a ‘fork in the road.’ Imagine you are standing at a split in the road, and you try to ponder which path or direction to take. The little voice inside me today whispers, “What If?” For me, today was a day I never imagined I would face in this journey of my health crisis.
I, at almost 42 years old was told by my medical team and hospital case manager on the floor that I was on that I could not go home. I needed to go to an inpatient rehabilitation hospital to work on strengthening and learning to use my legs again. I needed 24-hour care and an intense physical therapy program before I could return home and to my family. But inside my head, I thought, “What If,” I do not get better or, “What If,” my legs can’t really be what they once were? Riddled with anxiety and trying to comprehend the unimaginable change in my health, I just felt numb. How did I go from walking independent a week ago to fully dependent on a two person assist to even stand up? And then silence.
“Ms. ________; you were accepted by the facility.”
I felt I could now breathe. And then relief. What was to come? Here comes the questions again. Damn.
My hand clenched the hospital bed rail so tightly. I lay on my side facing the ‘buttons,’ on the hospital bed itself. Staring at them intently and using my other hand to raise the volume of the call remote so I could try to fall asleep with the TV on. I could care less about TV when I am in the hospital. What I do care about is, is keeping the nurse a button away because the silence when you are inpatient at times can be deafening and I find I grasp at anything to be a distraction from my current reality. This is my second inpatient hospital stay in under two and a half weeks. I have shed more tears than I care to admit. I am a firm believer that holding in emotions is never a good idea and only leads to excessive worry. I suggest a bible passage. Philippians 4:6-7, ” Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” (Passage from the New International Version bible of Bible Gateway)
Apparently, God knew this, ‘anxiety,’ is something that is a health issue, that if left unmanaged can move us spiritually farther from a relationship with Him and catapults us into leaning on the world around us to cope with it.
Going on almost two weeks of seeing inside the four walls of a hospital can make even the strongest warrior take pause and try to refocus on what matters most. If you do not have your health, then you do have anything. The key is to really know yourself health wise and learn the self-care practices that only you can do to bring calm in any storm, including quick and uncertain changes to your health.
I am being gentle with myself today and although the near future seems uncertain, what is certain is that God can carry it all for you, SO SURRENDER and LET HIM.
My mantra today is to be gentle with myself. ‘Gentle,’ as in my inner self talk, my emotional state and how I feel processing this huge life change. While I may feel physically broken, I know deep down I am still a pillar of strength. Have I been here before? No, never. When you lack anything from your past to compare to something that you are currently dealing with, it makes it that much harder to face. After all, It’s new for you. Usually anything, ‘new,’ for me brings a lot of change with it. While I would like to think I do pretty well at rolling with the punches so to speak, somehow today I am struggling.
Today is the day I am moving on to another hospital, but this one has a specific role in my treatment. It is an intense, physical rehabilitative hospital focused on getting me moving again on all cylinders. My goal is to walk freely again, but for now I will settle with just being able to take some steps without feeling like I will fall down. Being able to feel is something I feel we all take for granted until you find part of yourself feeling numb and then you realize how much importance there is to just feel, touch and move. I wish I could be like Dorothy in the “Wizard of Oz.” and tap my heels together so I could go home. After all, truly there is no place like home or to be with those you love. I know I feel, ‘home sick,’ as they call it tonight. Grateful for modern technology these days as opposed when I was first diagnosed 12 years ago. At least I can video chat and call.
It’s going to be okay even if it feels that it isn’t. Breathe.
Where to begin? I wished everyone in my family a Happy Valentine’s Day although Valentine’s Day really should be celebrated every day. The “I Love You’s,” cards, flowers, and acts of kindness should be in our everyday. How wonderful the world would be? Today did not go as planned. I find not only do you have to roll with it, but there are also times you find yourself wanting to scream, cry hard and just be alone to breathe. I had group Occupational Therapy today working on our arms here at inpatient rehabilitation. The facility was great so far, and the staff was very friendly and accommodating. I even got to shower in a shower chair and really wash my hair, a first in over a week as opposed to being bathed in a hospital bed. It truly is the little things. Then upon an evaluation by the doctor overseeing me today, she wanted further testing as to why my legs were not bearing weight and that I couldn’t hardly move them well or walk. I was frustrated. I was told I had to leave this hospital and go back to the hospital I just came from for yet another work up…this time in the Emergency Room hoping to incorporate those tests into why this was happening. I felt so down. So, defeated. I was transported by ambulance. I waited three hours and then when I was seen told they do not do such testing that is being asked for and I had to be transferred to yet another hospital that did. I got so upset is putting it extremely mild. I advocated for myself and voiced the distress I was feeling. I was at the mercy of the health care system. I kept texting my family, “I just want to come home!! I was done.” So, I got transported by ambulance yet again.
Then almost 24 hour later I am finally back at the inpatient rehabilitation hospital. The last hospital was able to set up one of those tests needed as outpatient and Neuro was able to access my condition and give the doctor here the medical information needed that allowed them to finally make the decision to take me back at inpatient rehabilitation and continue my treatment for the next ten days.
What I missed was watching on video my daughter and my mom open their Valentines I hand made them. I did get to see my husband, but only in the Emergency Room when I was first transferred back long enough for him to hold my hand as the port in my chest was accessed for IV bloodwork and medication. But we did hug, and I was able to tell him how much I loved him. It was the hardest and strangest Valentine’s Day I ever had. I cried tears. I learned very well these last two weeks that learning to be completely alone isn’t always a choice you make, but one that is made for you. I had to make friends with pure silence and being alone. I am grateful I could have my phone to communicate. I am most grateful I am here. I am fighting. I am loving my family from afar. It was just a rough day. Tomorrow is new.
“A random prayer”
Please help guide me throughout my day; help me to give all worries and lay them at your feet. May I be mindful how I view my situation ever grateful that I am okay despite my mobility issues and that it could always be worse. That I may be patient in affliction knowing you are there guiding my steps literally and that I am not alone.
*Last few pictures I had recorded.
*Lastly, thank you to everyone who prayed for me, supported me, texted me, called me and so on. You were what was helping me cope with the hardest of time in my life.