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Posted on 17. September 2010

Avoiding Trees

By Carla Schick

During the three years that I’ve worked for IG Living, I have had the opportunity to speak with many of you in the PIDD and neuropathy communities. Your knack for embracing life’s experiences with courage and resilience in the face of adversity is both humbling and inspiring.

Reflecting on this made me think of a time when I felt especially courageous and decided to try a new experience. I was on top of the world. Okay, it was only 8,000 feet, but to me, it was the top. The location: Snow Summit Mountain in Big Bear Lake, Calif. Beauty personified.

So there I stood, set firmly in my skis with a pole in each hand, at the top of The Wall, a double-black diamond run created for the experts. I should mention that I had my first ski lesson the day before, so “expert” probably isn’t the word I would have used to describe myself at that moment. It was 25 degrees and a stunning December afternoon. The sky was cobalt and clear, and 1,200 feet below, Big Bear Lake was gleaming. Soft bristly pine trees peopled the slopes and the snow was fresh powder. This was going to be a good run.

I took a deep breath, and with a couple of quick pushes with my ski poles, I was off.

Leaning forward and barreling down The Wall at 30 mph, ski poles dangling at my wrists, the wind tousling my hair, I didn’t have a care in the world. This new experience made me feel confident and relaxed. With nothing but fresh powder beneath my skis and beautiful Big Bear Lake in front of me, I felt courageous. My mind was clear and the only thing that was going to stop me physically was a tree, but since I was avoiding those quite nicely, I was golden.

This fond recollection left me feeling humbled because I know that many of you must contend with your physical limitations. And you do it with grace and courage. Instead of simply resigning yourselves to your illness, many readers have managed to embrace life and try new experiences.  For example, a young man who was profiled in one of our blogs, told us that he felt especially good after one of his IVIG infusions, so he decided to be adventurous and try zip lining (mind you, he is 17). Another intrepid reader demonstrates his love for life’s experiences by traveling extensively with his wife, as well as keeping up with his woodworking hobby. I also know that many of you relish the idea of being able to escape into your favorite music album or movie.

Even with physical limitations, new experiences are everywhere, if you know where to look. Think of things that you can do while having your infusion. Can you try something new? Aim to learn a new language or pick up that book you’ve been meaning to read. How about after your infusion? I know that many readers find it difficult to leave the house because post-infusion side effects can be limiting, so that might be the perfect opportunity to try something new, like testing out a recipe or learning to paint. And, of course, you can always sit down for a couple of hours and try to figure out how your Android phone works.

Along with a chronic illness comes “trees” that must be avoided: side effects, being misunderstood, physical limitations. What “trees” have you avoided in order to embrace life? How have you demonstrated your resilience and courage, despite your illness?

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Comments (7) -

Anonymus
8:39 AM on Friday, September 17, 2010

My big tree is, the feeling of sadness and the sense of personal value to my family. The feeling that you describe at the begining of your blog, "the feeling of being at the top of the world", is a wonderful feeling, and I miss it such much. So I tried to do what you suggest, keep busy, specialy if I'm not feeling particularly well that day, so that I can avoid being consumed with the sadness and negative feelings that I live with.

Rebecca
11:54 AM on Friday, September 17, 2010

I am fortunate that treatment for my CVID allows me to live life pretty normally as long as I don't overdo it. What I wanted to share was my one and only skiing adventure which didn't go as well as the above story.

This was pre-diagnosis. I was only 17 at the time. Having generally excelled at sports, I found myself extremely frustrated on skis. Falling repeatedly on the bunny slope while watching my boyfriend and his friends head off for the real trails. What I didn't know then is that my balance (and hearing) was being repeatedly damaged by autoimmune attacks. Somehow, I finally managed to compensate and stayed upright long enough to gain some confidence. I felt ready to try a novice run.

The view from the ski-lift was amazing and I didn't even mind when there was a problem and we were stuck in the air for 15 or 20 minutes. We began moving again. I jumped off at the appropriate time and headed down the slope. I was doing great and it felt good. Then I found myself in the air. Skis completely off the ground. I must have hit a mogul. I was completely unprepared. There has been no instruction for this scenario. Face first in the snow is how I next found myself. One ski completely gone. I heard a muffled voice (my boyfriend, who had witnessed the whole thing) with a distinctive note of panic to it. I pulled my head out of the snow, but couldn't see...my glasses were caked with white powder. I pulled them off, looked up at him and started laughing. I was completely fine.

I think of this story whenever I get caught up self pity. I tried something I never had done before. I failed pretty miserably, but had the presence of mind to just laugh at myself. You truly don't know what you are capable of if you don't ever challenge yourself. It doesn't have to be physical and when you do succeed, the satisfaction and confidence you gain may just boost your immune system.

It could have been worse...at least I didn't hit a tree...

Marty
12:53 PM on Friday, September 17, 2010

I really enjoyed your post, the theme being of courage and determination resonated throughout your experience as well as your relationship between PIDD and neuropathy communities.

I do not suffer Primary Immune Deficiency Diseases but I do work in a healthcare industry I come across information about people whose experiences help me get a better perspective on what our patience life in general is all about. Your post was very encouraging to folks who do suffer from this terrible disease; I will present this to my colleagues as a resource for future inquires on PIDD.

I’ve provided some further information from other who suffers from this disease as well as other organizations that provide information or aid.  I though you might find them informative.

http://agentorangevietnam.blogspot.com/
http://www.uhhospitals.org/tabid/3023/Default.aspx

Susan Giorgi Branch RI
2:15 PM on Friday, September 17, 2010

I love your article, this is so true for so many of us living with PIDD. There are many times really hard to guster the strength to keep moving forward. My unplanned granddaughter came at a time in my life that I do truly believe an angel was sent to me. She gave me the strength that I so desperately needed to go on. I was so sick and was so devastated at the loss of a job that I held for 17 years. I still was yet to be diagnosed and feeling like a total failure, not knowing still that it wasn't me who was claiming my strength and desire to go on at that point.

Once validated with a diagnosis, it still really took awhile for me to process the whole thing, however with that came alot of understanding as to how I was feeling everyday. I decided that it was completely wrong, so wrong for me and so many others out there going on for 25 years like myself for a diagnosis. This motivated me to educate my little RI State and people around me about PIDD. This has been one challenging experiences since physicians mostly believe that they somehow know everything.

I have been able to make some connections though networking with people, one who is a professor at our well known Brown University and now a dear friend. He has been extremely instrumental in helping me educate RI. But besides that he has truly become a dear friend who I never would have met had I not been through this.

I still sometimes get very sick and have trouble moving forward periodically, and then I remind myself of some of the triumphs that have come with meeting other people in my state that are going through the same issues, getting the RI Newborn Screening Committee to endorse testing for SCIDS when very few states are still in the very early stages of even knowing about it...helping others understand what they are going through is normal and they are not crazy like many doctors have made them think in the past.

My disease has is that huge tree on this path that my life for some reason has to be, I dodge it everyday, with some days almost hitting it, but I truly believe that I am exactly where I am supposed to be in this life.

Betty
5:28 AM on Saturday, September 18, 2010

I think my trees have been the years of misdiagnoses and the most hurtful comments even from friends and family who either found my illness an inconvenience ( I was raising a daughter alone and had a Mom and Dad who were growing older and needed more care- I was the "chosen" one for their care) - or unbelievable.

"You're sick again!"

When a diasgnosis finally came I only wished my Mom were still alive- often she would argue with MD's that there was something missing in me - and got no where. She died 8 months before I finally received my diagnosis; I was 57 She would have been 93. Years wasted- I became ill at age 4.

Once she said something I could never forget- "The biggest rocks are those thrown by the family."  

With the passing of years and many explanations, the family now understnds and does not throw those rocks in the form of nasty remarks .
Doctors- well that is a hit or miss- some still do not get it

Betty

Eugene Richardson
7:38 AM on Saturday, September 18, 2010

What a wonderful article and since my secret place is in the snow and mountains, the article had a very special meaning for me.  I have had undiagnoed and untreated CIDP for 31 years since leaving Vietnam and exposure to Agent Orange.  It took another 5 years to get a firm diagnosis and treatment that saved my life.  Since 2004 I have been received IVIg every 21 days and this has been my life line to reducing symptoms and helping me to keep breathing and walk as much as I am able.  

The tree I have had to avoid is the anger of going for 31 years without diagnosis with many medical insults and another five years without any teatment.  I discovered that my problem was not the failure of medicine (the tree to avoid), but the problem was getting help for my disease.  So I used my anger (the second tree with a positive side) as energy to stay focused on getting help for the disease, plus fight back by helping other neuropathy patients, speaking to patient groups, writing about the experience with positive lessons learned and now by getting ready to produce a DVD on Coping with Chronic Neuropathy for The Neuropathy Association with the help of 13 professional volunteers with nine of them being neuropathy patients.  

By helping others I have helped myself most and found meaning in a life with chronic illness.  So thank you for writing such a meaningful and beautiful story which encourages us to see the trees to avoid and as we go around them, make the new discoveries that are in front of the tree.

Colonel Eugene  

Barry
2:26 AM on Friday, November 19, 2010

At the age of 46 I was finally diagnosed with CIDP, having lived with the symptoms for many years and chopping down many trees (doctors, hospitals, etc.) to get to that diagnosis before being able to get treatment. Since then fighting to get and keep my IVIG treatment has been an uphill battle with a whole forest of trees to wind around. But I have to say that the largest and by far the densest "tree" I've had to keep finding a way around on this downhill slope is my own family and their uncaring attitude and unwillingness to accept me and this disease. I moved across the country thinking family was my best source of strength at the worst time in my life as I'm single and the only one of a large family of brothers and sisters that ever left the margins of my New England home state to seek bigger & better goals in life. Now I live in a basement apartment of my mothers house and within a half mile of my sibling and their children and live the loneliest life I never could have imagined, fighting for every trip to the hospital, doctor, pharmacy and grocery store. So for those who wish to complain about having to step aside for the little "branches" in life that slap them in the face as they wander about, I'll gladly trade my tree for theirs.

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