Don’t be afraid of life’s uncertainties

This past week Mike and I went to see my kidney doctor, as we do about every 4 months.  The purpose of the visit is to monitor my kidneys and how they are doing.  It’s always like sitting on pins and needles until he reads the numbers from the blood test, which tell you everything.  Fortunately, this past week the numbers were good.  

I’ve been off dialysis now for almost three years.  My kidneys started functioning to the point where I did not need dialysis any more.  This is not common and I am very fortunate. However, living with constant uncertainty is not easy.  Many people have illnesses that have no treatment options.  I know firsthand how difficult it is to wake up every day and not know my medical future.  Being afraid of this is a normal response.

How I have learned to cope with fear is by talking about it with Mike or someone I know well.  There is something very healthy and therapeutic about vocalizing my struggles.  This has helped me also to accept the facts that I can’t change.  


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My First TV Interview

Recently, I was a guest on a local TV program hosted by Scott Kaplan and Amber Mesker.   It was the first time I had ever been interviewed.  I did not realize how simple the set up was, as I expected to see a lot more cameras, lights and noise.  It was a simple set and very quiet.

I was asked to come on and tell my story about my accident.  When the interview began, I thought it would be about how to motivate people via my story, but instead it was an account of what actually happened.  I took a moment in my mind to figure out how to bring motivation to the story, so I referenced the moment when I was put in the ambulance and told Scott and Amber that my thoughts were centered on survival.  Instead of laying in a hospital, I’ll be laying in the sun and enjoying the weather.

The way I thought I could motivate people was to tell them that the most important thing when facing tragedy was to tell yourself, “don’t give up.  You’ll have your day in the sun if you hold on to life.”  After almost thirty years, I still tell myself that same message and find it to be very helpful to me as new challenges and struggles surface.

In conclusion, here’s the message for you, the readers:  When difficulty or tragedy strikes, realize that there are many different ways you can respond.  The most important thing to remember is that you can tell yourself is that it will be OK.  The moment won’t last forever.  You are worth more than the price of the trauma!

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Facing The Mountain Of “Walking Out Your Front Door”

Since my accident in 1985, I have been through some very difficult times.  There have been many days when I’ve felt fearful to “walk out my front door.” However, the focus of this blog is to help you as the reader understand that when you push through fears and “walk out your front door”, it changes your focus from what you can’t do to what you can do.

Here is an example while I was on a recent trip to Colorado.  I stayed with my sister Marcia.  During this visit, we had decided to have our nails done.  However, she could not go due to the fact that she had to work.  I decided to treat myself and get my nails done without her.  This was awkward, as I was already in an unfamiliar place and was somewhere that I had never been to.  I made the decision to “walk out her front door.”


I was under the lamp waiting for my nails to dry when I noticed a woman sitting next to me and complimented her on her nails.  We had some small talk during a big hailstorm.  I was concerned about leaving and going to another salon to get my hair washed because the rain was pouring down like crazy, and I did not have a car.  This women, whose name I still did not know, offered to not only give me a ride, but told me she would move her car for me and opened the umbrella right in the store.  Going outside in the pouring rain and hail, I did not get a drop of water on me thanks to this woman.  This was a complete stranger who did this for me.  She saw that my hands were shaking and asked if I took prednisone, a common prescription drug for tremors.  I told her that I did not take it, but I knew what it was due to my kidney disease. (Prednisone is also prescribed for kidney disease patients).  She asked me about my illness.  I told her “it is a long story.”  She wanted to hear about it, so I told her about my rock climbing accident.  After I had shared my story, she opened up about an illness that she struggles with.  I invited her to the IDA banquet and mentioned that my husband and I were the keynote speakers.  She said that she really wanted to come.  I eventually told me her name, which is Suzanne.

What I learned through this is that you can “walk out your front door” and make a difference in a stranger’s life.  When you live with an invisible disability, you may be pleasantly surprised by the impact you can make when you tell someone your story and what it has taught you.  Many strangers that we could meet every day have challenges like us, and they are looking for someone to talk to.  They need us as much as we need them.  That is why an organization like the IDA can be so helpful.

The key to “walking out your front door” and moving forward is to not only going outside, but to meet people and have meaningful conversations with them.  My meeting Suzanne in an unfamiliar place, and, not being afraid to tell my story, led to a meaningful conversation and a new friend.  This was worth “walking out my sister’s front door.”

OK, here is the conclusion: Come to the IDA banquet on Oct 14 in Denver and you’ll not only hear my story, but you’ll meet many people and hear many inspiring stories from those who “went out their front door.”

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My Mother’s Day Climb

Happy Mother’s Day to all the mom’s out there. It is a very special day for everyone who has children and families.  However, for some of us who may have lost our mother or possibly a child, it is a very difficult day.  It is also difficult for those of us who do not have children, especially those who do not or can not have children due to the fact we have a disability.  In addition, we need to remember that some mothers are spending their special day at a hospital or other facility, tending to a child who is seriously sick or injured.  This is what my mom experienced for many of her mothers days after my accident in 1985.

I am grateful for my mom and happy for my friends and family who are mom’s.  However, there is still a part of me that feels a void since I am not a mom and will never have my own child.  I am reminded of this when someone asks, “do you have children?” At that moment, my heart drops and I say, “no, I do not.” The decision I made to not have children is just one example of how the damage from my rock climbing accident continues to be a daily challenge.  If you met me for the first time, you’d never know that I live with several invisible disabilities.  As a result, I have had to make many difficult choices, including not having children.  I have wrestled with this for 27 years.

I know that there are many women who can not or choose to not have children, due to health problems and disabilities.  The solution is to find something else that fulfills the void to want to take care of someone or something.  I’ve found different avenues to fulfill my desire to nurture and care for others.  For example, I’ve been a volunteer at local colleges helping students transition into adulthood, worked with young adults who have special needs, have taken care of pets at a local pet store,  and I keep in touch with my god child and her mom.

Even though many women, including myself, do not have children, there are opportunities to get involved in other people’s lives and make a difference.  It is not a substitute for my own kids, but it is very rewarding and takes the sting out of the wound.  For those out there with severe disabilities, invisible or not, nurturing a child, friend, family member or pet can be just as rewarding.  A simple phone call, email or sending a card, can make a big difference, not only to the person who receives the call or note, but to the one who sends it.

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Angels on the Mountaintop

Those of us who live in suffering do not realize the depth of understanding we can give to others.  Whether it is on the internet, phone, or praying and sending good thoughts to others we know who live with invisible disabilities, we can make a difference.  Sometimes our pain and sickness lead us to being lonely.  Since we are already angels, we should try to remember that we are suffering for others who do not even know they need our help.

Here are two examples of how God has been able to use me to help someone that did not know they needed my help.  One, a friend of mine was having a baby.  I went to visit her in the afternoon and found out that nobody else would be there to support her during birth.  I stayed with her, postponing my dialysis, which meant more pain for me; however, not only was I able to hold Hadley’s hand during her C section, I was the person who cut the umbilical cord.  What an experience for me to be able to hold a new baby’s hand and to be able to celebrate a new life with a good friend of mine.  I held the baby, placed her next to my Hadley’s cheek and with tears in both our eyes, we shared a quiet moment that neither of us will ever forget.

A second example was this past week.  A good friend of mine from dialysis had been in the hospital for the past 3 days.  She had a heart attack brought on by congestive heart failure.  While I was visiting her in the hospital, the hospice nurse came in and asked my friend Molly if it was OK with her that I be allowed to stay in the room.  Molly shook her head yes.  Molly and I were very good friends.  The nurse continued to ask Molly questions concerning her quality of life.  At this point, Molly was in bad shape and was fighting for her life.  The nurse asked Molly if she had spoken with her kidney doctor about the possibility of not continuing dialysis.  Molly said no.  This was difficult for me to hear, as Molly was making the decision to possibly not get dialysis treatment any longer.  The nurse was basically telling Molly that even though her mind was strong, her body was weak and was giving up.

Most people could not go to a hospital to visit a friend or family member and listen to a nurse or doctor have a life and death conversation.  Even though its difficult, its very important to be there for people like Molly, when they need us the most.  Those of us with invisible disabilities can relate to people like Molly and can truly be an angel during some of the most exciting and difficult moments in people’s lives

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When I’m Weak, I’m Strong

“When you are weak, you are strong.” What does this really mean? For those of us who have invisible disabilities, this is a haunting statement, yet it is one of the most liberating and powerful principles available to us.  We want so desperately to look someone in the eye and say, “I’m doing great.  How are you?” The reality is that when we are hurting, we are not doing great and we find it difficult, if not impossible, to look at someone in the eye and say, “I’m not doing well at all.  Can you help me?”  When we find someone who will listen to us and understand how we are struggling, it is a huge boost of strength.

What do I mean by weak?  Simply this:  The fear of admitting that you are having a very hard time or struggling to the point of not seeing a way out.  For example, in the last 2 months I’ve come to the conclusion that I do not feel safe to drive my car due to how I’m doing physically.  Telling someone that I can’t take myself where I want to go is very difficult, as it means I have to depend on others.  On the one hand, this is a weakness, because I’m afraid to admit to someone else that I need help.  On the other hand, it is a source of strength because when I ask for someone else’s help, I’m letting them into my world; when I see that they accept me after knowing this about me, it is a great relief and source of strength.  It takes a lot of courage for me to let someone else know my weaknesses.  Regardless of their reaction, the courage that I put forth to do this, strengthens me.

Unfortunately, in our culture today, admitting that we are weak, unable, not smart, feeble, or anything other than strong and powerful is frowned upon.  Going one step further, it is my belief that we not only frown upon this, but we push people aside who are anything other than positive, strong, full of answers and fully capable of overcoming difficulties.  This is true not only for us who live with disabilities, but this attitude exists in our schools, neighborhoods, companies and families.

What does all this mean for you? Admitting that you are weak is OK.  Choose an area of your life that you’re having a hard time with.  Make a decision to tell someone you trust about this.  You will surprise yourself with how this is very liberating and how it will strengthen you.

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Facing the Mountain of Loss: Losing A Friend

In the last two years I have lost four people I cared for very much.  They both were about my age, 45. Losing these friends forced me to face a mountain of loss that I was not familiar with. Standing at the bottom of this mountain, I had no idea what to do next.  There are others out there like me who know what its like to lose a great friend and face this mountain.  When we lose someone we love, many thoughts and emotions went through our mind.  Getting myself to move forward would take some time.  This kind of mountain made me wonder why I am here? I thought to myself, “these people were no different than me, yet while I am alive they are gone from this earth.” My first step was to face my grief, talk about how I felt and admit it made me feel afraid.  After a while I asked myself the question what was my purpose in life?

This is a mountain I did not expect to face when losing friends.  They were no longer there to talk to, laugh with, or even cry with, so it made me focus on how I wanted to live my life. I missed all four of these people and I treasured our memories together.  Somehow their death gave me the a opportunity to face my fears.  To move further up the mountain, I had to realize getting passed this pain may not happen today or tomorrow or even a year from now, but I believed if I kept trying, I would discover how to get to the top.

As time progressed, my perspective began to change. My sense of self-confidence started to grow.  When I found myself getting closer to the top of this mountain, I remembered great memories and how they touched my life. Because they died at my age, I realized you never know when your life will end, so if you can, give it your best.  Different emotions have come as time has gone on. I know that there will be times when I’ll experience their loss again,  and I will face another difficult mountain. For now I am at peace.

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