My Dad recently passed away.  This past year, I watched as his health got worse and worse. But his health problems really began 38 years earlier. As a young man, my Dad was healthy and physically active. My mom was pregnant with their 6th child when my Dad went in for a supposedly routine surgery for what was thought to be an ulcer. Seven hours later, my Dad came out of surgery with no stomach and a diagnosis of cancer. 

There are no words to convey the courage my Dad exhibited over the years, because from that point on, he lived a lifetime of daily physical pain. Because of polyps, scar tissue built up and all kinds of other complications, including another bout with cancer, Dad had 21 major surgeries. The last surgery was a year ago. After each surgery Dad fought to get better – or at least as better as was possible to have enough health to have a good enough quality of life. This last time, he fought and fought and his body didn’t get better. It was like his body said, “Enough.”  

I have had the privilege of watching my Dad display incredible courage throughout his life and especially this past year.  He never, ever complained. Even this past year, as my Mom lovingly, tenderly cared for him, my Dad’s concern was always for her. 

Through all the years of pain and health troubles, my Dad always had time for others – especially his family. Near the end of his life, he reflected that having health problems actually made him spend more time with his family instead of pursuing career opportunities. Yes, he did work after the first cancer. But he worked with pain. There was a time where the job he had when he first got cancer didn’t work out for him anymore. He was too sick. He spent a time not working and became Mr. Mom. Then, he went on to find a whole new career. He had to adapt to this new life of pain. And he succeeded. 

One thing I remember in particular is many people with all kinds of problems – physical and otherwise – would come and talk with my Dad. He had a lot of compassion for people and they knew it.  His pain made him empathetic to the sufferings of others – even if their hurts weren’t necessarily physical. Even a few weeks before he died, I was with him when a neighbor called. This man was going to have minor surgery the next day and he was nervous. He wanted to come over and talk with my Dad. I was so touched. There was my Dad, literally on his deathbed, and yet he was still helping someone else. 

I don’t remember much about my Dad being sick and in pain all those years. I remember him being fun and I remember him being happy. Because of his love for the outdoors, nearly every weekend he took his kids (and other people) fishing, hunting, camping or somewhere in the mountains. He worked with us, played games with us, talked with us. He came to every sports event my brothers played in.

Because of my PC, I didn’t play sports. I didn’t really even like sports. When I was in high school I wrote for the school newspaper. For my very first story, I wrote a feature article about the football team. I guess it was ok because my advisor assigned me to cover the first football game of the season. I didn’t know a thing about football.  My Dad sat down with me and together we watched football games, all the while dad explaining things, telling me things like what a 1st and 10 was. I continued writing sports stories into college and Dad was my best supporter. Sitting together with my Dad watching all those football games while he explained them to me is still one of one of my fondest memories of my Dad.

And what does this have to do with life with PC?  Well, everything. My Dad often told me I was an example to him. The truth is, he was – and still is – the ultimate example to me of how to successfully live a life with pain. Our pain might have been different. But we both had it every day. My Dad showed me through example that pain doesn’t stop a person from living a happy life. Pain doesn’t stop us from spending time with family, working (even if it means different kinds of work) and serving other people.  

These last few months, when we all, including my Dad, knew his body just wasn’t going to rally this time, my Dad was asked if he had any regrets, or if there was anyone he needed to talk with or if he had anything left to do. His answer was no.  That’s the way he lived his life. When he died, there was no doubt I knew he loved me. He had told me through words and his actions often enough. 

My goal is to live life, regardless of my PC or my pain, like my Dad lived his life with his pain – with courage. My Dad was a praying man. I often heard him say in his prayers with us as a family, “Help us have the courage to do the things we know are right.”  My dad certainly had the courage, in spite of daily pain, to live his life to the fullest and do the things he knew to be right.

That is how I hope to live – happily and with courage - even with PC pain. I’m not there yet. But I thank my Dad, for leaving me such an incredible legacy as I strive to be like him and live life valiantly.

As a mom of four kids, in the springtime, I typically start thinking of all the marvelous things I’m going to do with my kids during the summer:  field trips, outings to the pool and park, library, nearby museums, picnics in the canyon, and visits to educational or historical places nearby. I always have great plans in the springtime for neat, educational things I want do with my kids during the upcoming summer.
Then, inevitably, the heat of summer comes and with it the pain. I don’t know what it is about my skin, but not only does the heat hurt my feet, but also my face. I’m not sure if that’s PC related or not, but in heat, the skin on my face also boils, causing little blisters and bumps. Yes, I’m a real beauty in the summer with all those bumps on my face. This happens regardless of whether or not I’m in sun or shade.  It’s all about the heat. And so my face, and especially my feet hurt in the summer. (My feet hurt more since I don’t walk on my face!) Pain is as mental as it is physical for me, and so when that pain and heat hit, all my best-laid summer plans to be mom-of-the-year tend to go by the wayside.  I see all these moms taking walks with their kids and doing other fun activities and projects, even going to the malls together. But who wants to do any of that when every step hurts so much?

So what do I do? Because I now know myself well enough, in the spring, when I’m still feeling ambitious and the weather is still cool, I sign up my kids up for lots of summer activities. There’s been swimming lessons, tennis, basketball, fencing and horseback riding, plus there are always fun and educational classes for youth offered through community education, the library or the local college.  Some of these activities cost money and some are quite cheap, even free. It’s just a matter of finding the activities.
This summer, my two oldest boys, who both have PC, have summer jobs. They are also both taking high school classes, either online or at the nearby college. It’s not them I worry about. They stay busy all on their own.  It’s my two youngest children who don’t have PC and who have lots of energy that concern me. I don’t want them to spend the summer watching TV. They do know how to play by themselves and there are play-dates with friends, but that only lasts so long.  I wish I were a mom that was excited to take them on fun summer adventures – like I see other moms doing - DURING the summer, not just when I dream big in the springtime.   But the pain becomes too much.
So my coping strategy is to sign them up for things. I take them because I’m “forced” to at this point. I’m committed, especially if I’ve paid in advance. It ensures that they have something to do to keep them physically active and engaged. Sometimes I think I’m basically paying someone else to play with my kids. Except they are learning new skills – skills I can’t teach them – and they are exercising and having fun opportunities. 

So even though I’d rather stay home in the air-conditioned house and read a book because the thought of putting on shoes is so awful, I spend my summer running my two youngest kids all over the place from one activity to another.  I’m always hot and sweaty and my feet are puffy and sore all the time. But I often take a book to read or a project to work on. Most of all, I get to experience the thrill of seeing them learn new things or laugh with fun at something delightful. I’m not playing by their side, but I do get to watch them participate and learn and do something neat.  We talk a lot in the car too, and we do have down-time at home as well.  It’s not really how I imagine a hands-on mom to be, but it’s my coping strategy. It’s the way that works for me to help my non-PC kids when the pain of summertime makes me want to do nothing at all.

That’s what I mean by my PC keeps me guessing. I would have thought January would be a month of pain relief. It usually is. Instead, I’m hardly sleeping at night. I’m exhausted most days because my feet wake me up so much at night. I’ll get that deep itch in the calluses that drives me crazy or the feet just plain hurt. It’s also a bit discouraging because I’ve walked on my knees for so many years that now my knees hurt. Often at home it can be a choice – feet or knees. I do have a wheelchair at home but it doesn’t go everywhere or get me everywhere I want to be, even around the house, so I have to choose if I’m going to thrash my feet or my knees.

As is my nature, I try to guess what’s making my feet so bad and for so long. I put my feet out of the covers each night, but invariably while I’m sleeping, they’ll come back under. So am I baking my feet with extra covers? I’ve had a pretty stressful past few months. Could stress affect my feet? What about diet? December was not a banner month in healthy eating for me – partly because of the stress. Could diet make a difference? But I’m eating healthy now and the feet still hurt.

So as cold as it is outside, my feet are still incredibly sore at a time of year when I’d expect them to be a little less painful. Don’t worry – I’m fine. I’m still plugging along like all PCers do and I hope I don’t sound too whiney. I actually feel quite matter of fact about what I’m trying to explain. I do wonder if others have experienced anything similar. Have they found patterns for good and bad PC days, or weeks, or months? I’d love to know. Because yes, after all this time, my PC still has me guessing.

What I found really neat about doing the journal was instead of taking just one day only to count our blessings, by taking 14 days, our entries were full of things we were thankful for, particularly based on what happened on each individual day of those two weeks. For example, during that time, our heater broke on a particular snowy, cold day. We all were really thankful for a repairman with knowledge, for heat, and for money to pay the bill.  Dave and I had a special date during that time. We both ended up with similar journal entries commenting about how thankful we were for each other, our marriage and our friendship.

The experience made us realize how much we have to be grateful for, even the little things, in any given day. I found that writing what I was grateful each day was empowering. In fact, it was so empowering I plan to do it regularly. It’s the holiday season now and a time when I often reflect on family and people and things that are most important to me in my life. But doing a gratitude journal has made me realize that each and every day is a blessing and it’s the little things that make life grand.

So what does this have to do with my life with PC? Well, everything! My life is so much more than my PC.  Sure, PC makes me who I am in so many ways. And I have an incredible life with PC, because of PC and yes, in spite of PC. Sometimes it takes just looking at the blessings of each day to see that.

I also think about the progress of PC Project. There may not be a cure right now. But if I take a look and count the blessings along the way, I can see so much progress, even little – and big – miracles along the way.  Not a week goes by without something wonderful happening at PC Project – an important contact is made, a new research discovery is found, a patient’s life is changed. It all amounts to looking at the individual pieces that make up the whole picture. There is much to be thankful for in the daily things that occur in the PC world.

I have much to be thankful for in my life.  Life is beautiful. It’s not always easy. But it’s certainly extraordinary when I take the time to count my blessings each day.

Sometimes hard things happen and I think I’d just like my life to go back to dealing with my PC and no other problems. And always, always, there’s someone who has a problem, whether it be physical, emotional, financial, whatever, that is worse than PC. Of course, that’s also relative too! I love to read. I like to read the words even more than hearing them on a CD. I’ve thought what a gift it is to be able to see. But then maybe a blind person would rather have sore feet. I don’t know. I guess the most important thing is to be thankful for what I have when I have it. It doesn’t mean I don’t be content to NOT try to find a cure or a treatment. That’s not it at all. It just means it’s important to enjoy the now and what I do have because it could be worse. And for sure, someone will always have a problem worse than I do.

My third son, Spencer, who does not have PC, just started his first year in junior high, thus his first year of walking to 7 different classes each school day. At first I had a hard time transitioning my mothering thoughts to having a child who walks pain-free. First, I caught myself worrying whether or not the carpool Spencer is in was dropping him at the door closest to his first class. Then, I caught myself worrying about how much he was going to have to walk to get to the car after school. Each time I had to stop and remember, “Oh, it doesn’t matter – he doesn’t have sore feet.” In fact, once I caught myself, I thought, “Great - walking a bit more will be good exercise.”

I found myself doing that several times the first week of school for a whole number of activities Spencer is involved in. Both Spencer and Nate are involved in band. Because of that, band kids get their lockers at the far end of the school. It’s really inconvenient and adds a lot of walking. When that happened to Nate a few years ago, we petitioned to get his locker changed. When that happened to Spencer, I had to remember that it is ok.

It’s kind of interesting having a child who doesn’t hurt when he walks. I have to step back and realize that it’s really no big deal for him if he has to walk the length of the school several times over. And if I’m honest, it’s actually a relief. It’s one less thing I worry about for Spencer. As he follows in the footsteps of his older brothers, I realize Spencer is going to make those steps pain-free.

Then I have Rebecca who has boundless energy. She, too, is like Spencer and doesn’t have PC. She runs freely across fields and courts and plays happily and pain-free. It is fun to watch and my heart is happy to see my children who can, run and play till they are completely exhausted and then be able to sleep at night because their feet aren’t keeping them awake.

That said, I don’t want to diminish in any way the great strides Sam and Nate are taking. I don’t ever want to paint a picture of my “poor, hurting children with PC.” To portray them in any way as miserable would be a great disservice to their characters. They hurt, no doubt about it. But Sam and Nate both are highly successful in school and in their activities. If you ask them if they are happy, they will tell you yes. There is too much laughter in their lives for anyone to think otherwise. I am told on a weekly basis from people from all walks of life what outstanding boys Sam and Nate are. I take no credit. I truly believe their PC has made a huge difference in shaping their characters. I believe other people with PC would say the same thing about themselves. It’s important to me to write this because I don’t want anyone with young children with PC to ever think that just because life is painful, it’s not happy.

It’s mostly been a week or two of observation, as a mom, the differences in what I worry about between my kids with PC and my kids without PC. Bottom line, I worry about all four of them for different reasons – because unfortunately I’m a worrier by nature - and I also rejoice in all four of them as well.

What impressed me the most is how popular golfing is, how generous people are and that people who love to golf like golfing for a good cause. The entire event was a huge success. Besides the funds that were raised, people – golfers – from our community who had no idea about pachyonychia now know about it.

I left that day feeling an immense gratitude for Mary and the others who weren’t afraid to try something new. I get so nervous having people know about my disorder. I mean, people who know me well know something is up, especially since I use crutches a lot. But it’s amazing how few people really, truly know what’s up. I’m not ashamed that I have PC, it’s just awkward and it’s embarrassing somewhat to put it out there that I have some rare, kind of weird, and yes, kind of gross thing going on with my skin.

And yet, at the golf fundraiser, no one seemed to mind. One of the golfers was a guy I knew from high school. He came up to me and said hello. I’m quite sure he never knew what I had in high school. But here we are, 25 years later and I don’t think it was a bother to him. So why should it be to me?

Likewise, PC Project held a big yard sale. I was reluctant to ask my friends and neighbors for help. I don’t know why – something about me again - come help me – I’ve got this rare, weird thing going on. And yet when I finally did send out a few emails, I got incredible responses. Mary recently reminded me – it’s not about me anymore anyway. It’s about helping so many others.

So I’m learning. Maybe it’s years of insecurity and yes, even times of rejection or being made fun of as a child that make me reluctant to put myself out there. How refreshing it is to know that so many people are really accepting and kind. I’m dealing with mature adults now and it’s a whole new world!

Dave was in DC once on business and spent a free day there. Dave is a fast walker and in good shape and he said his feet were sore and his legs were tired at the end of the day.

So here we are – a family of six, with three PCers, including me and my two boys. And already I’m getting nervous about this vacation, thinking what in the world are we getting ourselves into?

I’m back to the whole vacation nervousness of going somewhere new, wondering how we’re going to do it with three of us with sore feet. It’s one thing for us to take a vacation in our car where we just drive up to places and don’t have to walk much. But DC seem like it’s a place where we’ll be walking a lot and taking a lot of public transportation. If it were just Dave and I it wouldn’t be an issue because we’d just take my wheelchair and Dave would take care of me.

But this time we’ve got the whole crew - three who hurt to walk and two younger ones, especially our young daughter, who will need to be held onto in the big crowds.

Our kids love history. They love learning. Dave and I decided this was the perfect time, especially for our older boys, to see the nation’s capital. Even when we told the kids we were going, they each had specific places in mind that they already knew about that they wanted to be sure and visit. So we’re doing it.

It’s just one of those things about having PC that adds that little extra stress in my life. Once I’ve been somewhere and done something I don’t worry about it so much. But when my feet are sore and I can’t walk a lot, there’s a kind of vulnerability I feel, going to a new place. Having kids to take care of – especially ones that will also be hurting - just adds to that feeling.

I’m sure it will all be fine. I’m trying to get us prepared. I’ve tried to research as well and it looks like there are lots of hop-on/hop-off buses that just might save our feet. I’m trying to map out where we want to go and when so that we minimize our walking. And we’re taking two manual wheelchairs that we can share between the three of us if we need to.

We’ve just never done a trip of this scope where we need to get a whole bunch of us around in a place where we have to cover large distances. And for those of you know Washington DC, you probably think I’m crazy to even be worrying. But like I said, it’s just one of those things about having PC where the unknown makes it a concern.

I wonder if others with PC ever have concerns like this or if it’s just me – the chronic worrier?

Springtime is certainly a time for a PC pattern for me. Right now spring is trying to emerge here in beautiful Utah. While most people I know are looking forward to warmer weather, I feel a little trepidation. I, too, look forward to that good earthy smell and jacket-only weather, but I also know what’s in store.

A few weeks ago, the temperature increased by about 20 degrees and suddenly so did the pain in my feet. It’s ok. I expect it. I say to myself, “Here we go again.”

Although I admit, when the pain increases each spring, I’m always taken a little by surprise initially. It’s amazing how easy it is for me to accept life in the winter when I might not hurt as much. Even with constant pain while walking, it’s easy to forget that it does get worse.

Perhaps the spring pain is just to prepare me for the summer months ahead when it really gets hot and I will really feet an increase in pain. I guess we can start saving now for that big air-conditioning bill we’ll have this summer! J  And it still won’t stop me from enjoying the tree blossoms and flowers and the warm weather after a cold winter

Sam really just has two more years of high school. Nate has four. For the first time, I really thought about the fact that my kids are going to leave home, maybe sooner than I want them to!

What made me especially thoughtful was watching Sam up there singing. He looked quite dashing in his tux. But I also know he was in pain, standing up there so long. I wondered what the future will hold for him, especially how it relates to his PC. Sam is just 16 and hasn’t shown much interest in dating. Is that because of his PC insecurities or is he just not interested?

I have four brothers who didn’t date much in high school – they just weren’t interested either. They didn’t have PC though and they all went on to marry nice women and have happy lives. So perhaps that’s the same for Sam. I do know that when I was in high school and even into college – where I dated a lot – I still wondered if anyone would want to marry me with my PC. I wonder if Sam ever thinks about that. Or Nate. I guess I’ll just ask them. (In one of those good talking moments I have with my kids, of course. Not just over breakfast.)

 Nate is less than two years younger than Sam. Yesterday I watched him play in the Jazz Band. He’s a trumpeter and he stands in the back. If he wanted to he could use a high stool to sit on. But he doesn’t and he won’t. He’s too embarrassed for anyone to know he has PC or that he might need a special accommodation. I sometimes think it’s ridiculous. After all, it’s just a stool. But I’m also not in junior high either. So like Sam in the choir concert, I watched Nate shift around from foot to foot. I knew he was in pain. But he never says a word of complaint.

I wonder how long both boys will be able to get away with it – this standing and extra walking and not wanting others to know and so doing nothing to relieve the pain – even something as simple as sitting when everyone else is standing. They both had to come home after their respective concerts and pop blisters. That’s the thing about PC. You can say you’ll tough it out – and you probably can. But then you have to live with the trauma you cause to your feet. For me, I will blister within just a few hours of walking or standing too much. It also translates to lost sleep and lost production later on. So I’ll always have to weigh that in to my walking choices. My boys do too and as they grow older and have to walk even more, especially when they go to college, they will really have to make good walking choices.

I do know that PC influenced some of my decisions in the teen and young adult years. I wonder how much PC will influence my boys’ choices, especially as they are entering the ages where their choices will have an ever greater affect on their lives.

I have no doubt whatsoever that my boys can and will do fine in life. It’s just lately that I’ve realized their time as kids in my home is quickly closing. I know they have to go through their own set of challenges. As a mom, though, I also want life to be kind to them. I don’t want things to hurt too much.  I know that’s not realistic because that’s not, well, life. But I can’t help but still want the very best for my boys – PC and all. In turn, it’s my hope that regardless of their PC, both boys will continue to be the good individuals they are and bless the lives of others.