I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.
Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.
There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.
Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.
Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.
Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.
My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.
On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.
Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.
About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.
Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.
Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.
I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.
Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.
Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.
Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....
Rhia Steele April 9th 2015
