Sue’s Story, Part 1 of 3

I have had two major life-altering “incidents” in my life.  How each was treated was so amazingly different, it leaves me in a place where advocating for myself and others is now foremost in my heart and mind.
We have made great strides in the medical world on some life quality issues, which I lived through in the first “incident”, and came out the other end almost perfectly whole.  The second life- challenge has not been any where near the same process, and I’d like to share these stories with you.

In 2001, my husband and I were traveling home from an Oregon State Football game in Corvallis, OR (OSU won – that was a plus – Go Beavs!), making our way home, windows down, enjoying a wonderful warm fall evening, just enjoying the ride. We were driving in the left lane, with the traffic moving at about 60 mph. Three exits from our home, and one exit from the community hospital, a car zoomed by us at an incredibly scary speed, and I watched as that car lost control, hit the right side jersey barrier in front of us, and in horror, I knew exactly where that car’s trajectory would be. He bounced off that concrete barrier and like the speed of a missile, crossed 2 lanes of traffic. It was a direct hit at our car with both of us bracing ourselves.  There was a moment where sound and time seemed suspended and I watched the car bounce off of ours, turn in a circle, and slam us again, driving us into the center highway concrete barrier.

My husband was trapped between the barrier with no way out, and I can remember the absolute quiet after the screeching of tires and doors opening with people running our way. I looked at my husband and hoped he was alive.
Thankfully, he was. Bleeding, broken glasses, and pretty shook up, (and very annoyed that he couldn’t get out of the car!) he was even more concerned about me as the direct first and second impact was right where my legs were. Somehow, in my need to get to Mike, I made it out of the car and collapsed. Needless to say, we were taken to the hospital and treated. Mike’s injuries were minor which was such a relief for me. Mine were not.

surgery-79584_1920In the next seven years, both of my feet were reconstructed. My heels were made from my hip bones, tendons were taken from one place to be used for the big toes. Several times I experienced necrosis of the bone (bone death), and more surgeries were needed. I have 21 incisions on my body that are all related to this accident. I missed 2 years of teaching (my very favorite thing in the world besides my family) getting the BIG surgeries done. I went back to teaching in a wheelchair for about 4 years and slowly got myself (with the help of incredible people!), to the point where I could do half time walking and use the chair if I needed it.

 

Today, I stand MOST of the time. I don’t have the help of all the tendons one needs to stay upright for long lengths of time, but I like to push the envelope. The young man that hit us was driving a stolen car, had a .28 BAC, and was illegally in the country. He was given help in the hospital and released. When it came to the Grand Jury Indictment Hearing date, he was gone, gone, gone. The burden fell on us and we’ve taken it and worked with it.  I wish he’d stayed around, as I am a Restorative Justice gal and feel he should have been my ride to all my appointments, learning how much he impacted my life.  I don’t get my way all the time.

We searched for a doctor who would put me back together. It took almost 6 months to find the right person, which seems like a long time when you want to move forward. Some doctors wanted to do only the tendons, or only the bones, but not all at the same time, and the amount of surgeries would have been, well,…ridiculous!  A local surgeon said that a doctor was moving into the area who could possibly do all the surgeries and who was affiliated with a hospital in the state of Washington.

We met with him and the wait for the right surgeon was worth it!  Right away, I knew he was “THE ONE”! In conversing with him my husband asked, “How is it that you know how to do this, and no one else will take Sue on?”

He answered with a question, “How many Constellations can you pick out in the sky?” Mike’s reply: “Maybe 4?”.
The surgeon’s comment: “I know them all”.  One might think that answer was pure arrogance. However, he was being truthful.  If you were SITTING in my slippers (no shoes possible then!), it was like hearing we’d won the lottery.

I was in love with his belief that he could make things happen; I was All in. You have got to LOVE that “can do” attitude and the idea that we had a ten to eleven year plan was so do-able! – I would walk again! Every rehab visit, doctor visit, all of it…I was supported, and everyone knew their job and knew it well.  I am not saying it wasn’t hard – it was, but I just knew that I wanted to walk, wanted to teach, and wanted, down the road, to be there for my kids and (Hopefully) generations to come.  I never resented the wheelchair – it was my best friend, but if my quality of life could be made better it’s what I wanted!
Everyone knew what to do and we knew what would be expected of us. Confidence! Perfectly laid out plan of attack; as it should be, right?

I am on my feet still and I was told when all was done I may have 10 good years before the transplanted tendons began to fail. I’m not as fast as I used to be, I get a bit creaky and stiff quite often now, but there was an incredible amount of damage! It is so great when a plan is laid out and it follows the path about as perfect as possible.

Shouldn’t medicine always work so perfectly?  It would be nice, but it’s not the case in every instance.  Several years into the surgeries, the next life-altering episode of my life began.  This time, so far from cut and dried.  Gone were the feelings of confidence and conviction that everything that happens to us must have an answer, and an end. Resolution or Cure.

My naiveté was certainly showing, and not just my lack of wisdom, or experience, but those of the medical profession, too.  There was no straight path, no roadways signs for this.  I had to go through the storm, as before, but I had no rudder!

SueeArticle Written by Sue!

Sue Hargrave is a retired school teacher and an international advocate for Chronic Idiopathic/Spontaneous Urticaria (CIU/CSU). She administers a global CIU/CSU support group online.

Part 1: Sue’s Story
Part 2: Sue’s Hives Are Going Haywire 
Part 3: Sue, Stats, and CIU

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