How to go From Surviving to Thriving

From Surving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

  • Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
  • Know their ultimate goals so that you can look beyond your own
  • Get their loved ones involved—it will empower both them and the patient

For loved ones:

  • Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
  • Remember to take care of yourself
  • Ask questions, stay involved

Patients:

  • Suddenly, everything has changed
  • Set goals, work toward them each day, ask for help
  • No therapy is beneath you
  • It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

  • Hope
  • Pray
  • Love
  • Believe in miracles”
2015 conference picture

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.

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I Believe in Miracles

youre-a-miracleIt was a grueling decision to stop the sale of our home in Sandy, UT. We were excited for about our new beginnings with an updated home and a better job. I wavered back and forth on which was the right choice. How I missed discussing this with Mark. With every fiber of my being I wanted our life to go on as we’d planned. The home we were most interested in was located in Uintah, just south east of Ogden. Weeks had gone by with no improvement and the hospital staff was not giving any hope there would be any. The realtor that sold our home was encouraging me to go through with the sale and not lose the deposit. Her advice was that we’d need the money now more than ever.

The hospital social worker assigned to us counseled me to stay put. He suggested the kids and I would need the support of our nearby friends. We had lived in our home for ten years and had established great relationships with many of our neighbors. His suggestion made sense to me, but backing out of an agreement seemed not only wrong, but felt like a giant step backwards. I wanted to move forward and not give up on our plan.

How would Mark feel when he wakes up? Would he be upset that I didn’t follow through with the sale? Would he feel like I gave up on him? I wanted to make the right choice…a choice that would be best for Mark, the kids and I. Believing that Mark would wake up any day, I wanted to put off the decision, but realized it wasn’t fair to keep the buyer wondering if the sale was going to go through or not.

One night I had a dream that I went through with the sale of our home. Because Mark was unable to work, we could not qualify for a new mortgage. The kids and I had the stress of moving into an apartment while Mark was still in the hospital. After months of rehabilitation, he came home in a wheelchair which was nearly impossible to maneuver in the apartment. It was hard for the kids and me to make new friends with all the other adjustments we were going through. Mark didn’t know anyone. He felt lost in unfamiliar surroundings and people.

The dream was the first insight I had on what our life could be like…but it was just a dream. I didn’t want to believe it, or even think it. I wanted Mark to be completely healed and for life to continue as we knew it.

The advice of the social worker seemed perfectly logical after the dream. I called the realtor to let her know we needed to back out of the sale of our home. It was the first tough decision I had to make without Mark’s input. I was sad, but relieved at the same time. I didn’t need one more thing to worry about and as much as I wanted to move, I knew the timing wasn’t right.

Over time it became obvious to me that to the doctors, nurses and therapist saw Mark as a body they were in charge of keeping alive. However, to me he was a person, a son, a brother, a friend, a father and most important to me…my husband. While I appreciated the professional healthcare team’s knowledge and skill, I was offended by their bedside manner, especially the neurologist. I had never felt such strong conflicting emotions before. How could I be so grateful yet resentful at the same time about the same person? As the weeks went by, my resentment grew. I knew Mark needed their skills, but they gave no hope for improvement. I was scared and didn’t understand the things they knew through their education and experience. I was discouraged and constantly worried about Mark’s condition. How long must we endure existing on the edge between life and death? Five weeks already seemed like forever.

When I was at the hospital I worried about the children. Were they okay with the neighbors until I got home? School was going to be out soon, then what? Will I need to impose on family and friends all day? I felt like a neglectful mother for not being with my children.

At night when I was home with the kids I worried about Mark. What if he took a turn for the worse? Would I be able to get to the hospital on time? I was grateful for brothers and my dad who took turns being with Mark at night, but how long could I expect them to do this? My mother was driving me every day to and from the hospital, not only because our car was now totaled, but I also had a broken collarbone and my right arm was in a sling. The 60 mile drive twice a day was draining me, what was it doing to my mother? I hated to be dependent on others.

The only thing I knew for sure was that I needed to have Mark closer to home, but how could I make that happen? He was comatose because he had a traumatic brain injury. His right lung had collapsed and his red cell count was too low. His body wasn’t getting the oxygen it needed.

One night I got a call from the doctor. “Mark’s white cell count is dangerously high, which indicates infection, stress and inflammation. We think he may have a serious liver infection and we need your permission to do a liver biopsy.”

I gave my permission and hung up the phone, feeling helpless.

miraclesI knelt by my bed and cried out, “I’d been praying for Mark’s red cell count to increase and his white cells did. Why aren’t my prayers being answered? When will this nightmare end? I’m scared he can not get better. I’m worried I don’t have the strength to endure life this way. I am exhausted! What am I suppose to do?”

In my despair, a  question came to my mind. Do you believe in miracles? Yes, I believe in miracles! Then assurance came —If you believe, you will see miracles wrought before your eyes. Remember, some miracles take time.

Miracles Happen

Hope brings MiraclesSome miracles take time and aren’t always what we hoped for, nevertheless, they are still miracles. Mark’s life is a miracle, but it’s not the full recovery I hoped for. I was discouraged and hurt by doctors, nurses and the therapist who tried continually to squashed my hope with their negative statements and statistics because they didn’t believe I was facing reality. Concerning Mark’s recovery I was told I looked through rose colored glasses because I remained optimistic and hopeful. Twenty-three years later and with more life experience, I understand and have forgiven them for their pessimism. They were doing their job and I was adjusting the best I knew how with the strong feelings I had about his recovery. I’ve thought a lot about “false hope.” As shocking as the statement was to me, I recognize the spot the therapist was in, but that doesn’t mean I agree or like the statement. I truly appreciate their knowledge, which kept Mark alive, but couldn’t understand their lack of hope for improvement. I feel without hope life loses purpose. I closed my Sunday Story asking if there was such a thing as false hope. I loved Laura Nordfelt’s comment:

“This is a thought provoking question for me now. I realize that for the first year, I don’t think I placed any expectations on Greg’s recovery. I lived one day at a time. Go to the hospital. Go to appointments. Work with him on his therapy. Go to my job. Cook for him. Encourage him. Love him. Watch him nap. Watch him play brain games on his iPad. Go for walks up and down the street. I just went through the motions.

Then all of a sudden one day, he went to work for 3 hours. Pretty soon, it was 4 hours and so on. One day, he got his driver’s license and a whole new world opened up for us. Our lives began to take on a different meaning. Independence crept back in piece by piece.

I don’t think I ever had feelings that our lives would ever be the same because his physicians set me up from the beginning with cautious expectations. So hope? I tried to set the bar low and decided we would be grateful for whatever we were given. We (Greg) worked as hard as two people could possibly work with all the tools that the therapists had in their boxes and any more we found along the way. I believe it helps tremendously that we are hopelessly optimistic people! Just try and tell us we can’t do something, nope, not having it!”

Thank you, Laura, for sharing Greg’s miracle. I think being optimistic, hopeful and having faith is the most important tool in the box. It is the fuel that drives us to work hard for something. Twenty-three years ago, I set the bar high. Part of it was my lack of experience with life, but most of it came from being an optimistic, hopeful person full of faith. A person who proudly looks through rose color glasses and realizes there is a higher being in charge of life. I’m grateful I set the bar high and I’ve never regretted it. Have I been disappointed? Yes! But I wonder where we’d be today if I didn’t have high expectations and a belief that only God knows all.

We are all on a different journey with different experiences, however the feelings and emotions are the same. No one should tell another how they should feel or react to a given situation, especially when it’s a traumatic experience.

What miracles have you witnessed?