Some Days are Better than Others
On days like this I’m reminded of the old U2 song “Some Days Are Better Than Others”.
Everyone has bad days. Days you feel you should just go back to bed because karma’s just not on your side. I’ve had days like that in spades. One day last year I swear that Loch single handedly destroyed my house in the first hour he was awake. He tripped and threw juice all over the room. He wildly danced/kicked the tinker toy sculpture I’d made – to encourage him to play with something other than cars – shattering most of the pieces. He’d pulled the towel rack off the wall and dropped his strawberries all over the carpet I’d just finished cleaning, all with Caillou’s exceptionally irritating voice whining in the background. I was beside myself. You look around as if to say “Is anyone seeing this but me?” realizing that this isn’t an episode of punked, but your life, and it’s on you to just suck it up and clean the carpet again. Another day I woke up to find my car broken into and my XM radio stolen. Less than a half an hour later the CD player in my car – which I’m now using- breaks and eats my CD, and when I try to get the CD out – to stop the hideous crunching noises – I rip my pants. Those days are annoying. Those days make you groan. But today’s different.* Today’s a sick day. And the problem is, when I don’t feel well I get discouraged, and then my symptoms are exacerbated by my melancholy. I don’t want to interact with people. I don’t want to snap out of it or be positive, I just want to watch TV.
balleralert.com
When I was first diagnosed I watched a lot of TV. I didn’t want to think. I didn’t want to deal. I wanted to pretend it wasn’t happening. I’m still like that a bit. I don’t do support groups. I don’t often try to reach out and connect with others who have my disease. Sometimes, when I do talk to people who are sick, I see a kindred spirit and I know I’m not alone. But, for the most part, I want nothing to do with sickness – my own or others. I want to be around healthy people. It helps me pretend I’m healthy. And for the most part, I find that works for me. There are also some times that my being sick can be helpful to others, and for that I feel grateful. My dear friend Shannon was diagnosed with Breast Cancer last year. She fought with grace and beauty and took all it threw at her – from chemo, to the port in her chest, to the loss of her hair and toenails – with her head high and her two little boys smiling the whole time. She was magnificent. So much so that Sunnybrooke Hospital in Toronto asked her to be the “face” of the disease. She was everything you’d hope to be in that situation. Strong, confident, positive and, even bald, gorgeous. That being said, it was also incredibly hard on her, and we spoke a lot as I was one of the only people that could truly understand staring your own death in the face and saying, “No. Not today. Not me.”
My darling friend Shannon. The most beautiful cancer patient ever. All strength that girl.
One thing we really bonded over was that we weren’t brave. People always tell you how brave you are but really, what’s the alternative? Lying down on the floor and giving up? It’s not brave. It’s just living. Putting one foot in front of the other and continuing to live.** It’s scary and infuriating. It makes you so mad at the unfairness of it all. Why you? Why this? Shannon, like myself, had lead a pretty squeaky clean life. We liked our cocktails, but other than that we were super healthy, non-smoking, gym-going, drug-free ladies in our early 30’s. How were we the one’s getting sick? When I was first diagnosed they asked me a bunch of questions. Did I smoke? No. Did I use diet drugs? Never. Did I do cocaine? I’m one of the only people I know that never tried it. Of that last one I’m very glad. If I had, I’d always be wondering if I gave this disease to myself. If I was to blame. But I’m not. No more than Shannon was to blame for her Cancer.
I was glad I could be a sounding board for my friend who was battling similar demons. Someone she could talk to when she was feeling like “What the *&%$?”. And in some ways, I envied her. I envied that she had a course of action to follow to potentially rid her body of her sickness. She fought that disease with all she had and she’s come out the other side cancer free. Thank God. I know it could come back, but for now, she’s just Shannon again. Probably even a better version. A wiser, more aware soul. I wouldn’t wish that kind of clarity on anyone, but I know it’s the one good thing about getting sick. Your perspective shifts and you can never go back.
There is no other side to come out of with PH yet, and on days like this, I feel so sad. I just finally admitted to myself that I should be using oxygen therapy at night. To be honest, I should probably be using it all the time, but I can’t get my head around having those tubes on my face on a daily basis. I know people do it every day, and I’m sure they hate it too, but I’m not ready. I want to stay looking well, even if I’m not necessarily feeling that way, for as long as I can. I should have probably started oxygen therapy over a year ago. I sleep poorly. I often wake up with headaches. I’m exhausted. It’s like I’m hung over all the time, and I’ve finally admitted I could be doing serious damage to my organs forcing them to function this way. I know it’s vain. I know it’s shallow. But I also know myself, and I can foresee how this kind of change will affect my personality and self perception, and it’s not good. I don’t want people to see a sick person when they see me. I don’t want to have to see a sick person myself when I look in the mirror.
nhlbi.nih.gov
So much of my positive attitude stems from not appearing to be ill. From keeping me “me” at least in pretense. I know looks aren’t everything but, like it or not, the world is kinder to attractive people and I’m not yet willing to give that up. I’m still young. I’m still active. I know myself enough that, should I have to wear a tube on my face all day, it’ll change the way I interact with the world. It will change who I am. The people in the ads for these portable oxygen tanks are all in their 70’s. I’m in my 30’s. I’m outgoing and funny and positive and I can’t guarantee that those things won’t disappear under a blanket of shame if the first thing people see when they look at me is sickness. I don’t want Loch to be embarrassed of me in front of his friends. Parents are embarrassing enough. I want to be cool for him. I want him to be proud of me. I don’t want to walk the red carpet with my handsome husband and a tube on my face. I don’t want people to pretend I’m not there because it’s easier than dealing with what’s going on. Look, I’m not going to lie. I’ve had a lovely life as a pretty girl. And I know that pretty girls discover one day that they are no longer the beauties they once were and it’s an adjustment. I met a sweet older lady in the post office once who complimented me on my hair. She told me she used to have beautiful hair and when she was young she was quite the knockout. She told me that getting old is tough. That when people are rude or dismissive of her, she often thinks, “You wouldn’t have talked to me like that when I was young and beautiful”, and she’s right. People who complain about men making cat calls should consider what’s worse, the cat calls or the day they stop. That’s age. That’s life. With any luck you hope to take care of yourself and your body enough to grow into an attractive older person. People might not look at you the same way, or be as nice as they once were, but you can still be considered viable. Interesting. Sexy. Adding a tube to my face completely removes that possibility right now, and I’m just not ready for that.
A really nice girl wrote me to tell me her sister had died of PH 9 years ago, and though she had “no helpful advice per say”, she just wanted to let me know that her sister had also decided not to give up. To fight. To not let it take her. She wrote me to say it sounded like I had a similar attitude. It was such a nice letter, but the thing that stuck with me was that her sister had died. I hate hearing that. It’s so discouraging. I realize my disease is progressive. That you can be going along just fine, then you take a downturn, and it can be all over. It’s hard to see this oxygen therapy thing as anything other than a downturn. My lovely doctor told me that it’s no different than last year. That I could, and probably should, have started it then, so this is a positive step. It just doesn’t feel like one to me. My mind, sadly, tends to gravitate towards the negative. I wish it wasn’t so, but it is. Sean recently forbid me to read the PHA Newsletter. He told me he’d read it for me and give me any pertinent information, but I wasn’t to read it myself.
Pathlight Magazine Image from the PHA website
The problem was, every time I read it I found some article about a young woman like me had just died. Last year the daughter of the President of the entire PH Association died. She was 21. I thought, if the President’s daughter can’t make it, where does that leave me? The most recent issue had a little article written by a girl my age with PH. It was a testament to her husband, her primary caregiver. She talked about how much she appreciated him, and how he’d stepped up to really help with their brand new baby and how she couldn’t do it without him. I totally connected with her. I feel that way about Sean. A lot falls on him and he takes such excellent care of me. Especially since my parents live in Toronto, and his in Oregon, we really only have each other to lean on and it can be tough. It’s a lot of pressure to live with a baby and a sickness, and I felt this woman was writing about the same sort of life. I understood and appreciated her. Then, when I got to the end of the article, it said, “As we went to print, [this woman, this mom with nice husband and new baby] lost her battle with PH.” WTF????!!!!!! The woman I’ve just connected to is dead? How am I supposed to be positive when I read stuff like that?
Throw that together with a day where my breathing is off, or I find out I have to wear oxygen, or I have to ask a grocery store clerk to lift Loch out of the shopping cart because I just can’t do it, and I’m a wreck.
Look, I don’t want, or plan, to die from this disease, but the reality is I can, and sometimes that’s all I can see. Some days are better than others. I just wish my problems were about juice on my carpet and broken CD players. In hindsight, those would be good days.
* I wrote this last week. Today, as you would have it, I feel fine. That’s the thing about this disease, ups and downs.
**As a side note: Another thing other sick people and I strongly agree on, is when you find out that someone you know is sick, not flu sick but might die sick, DON’T SEND FLOWERS. It’s such a nice thing to do, but when I was first diagnosed, my house had so many flowers in it, it was like I was at my own funeral. I hated it. Plus, flowers are pretty and then they die. It’s just not something you want to be reminded of if you’re dealing with your own mortality. Send a magazine subscription or nice lip gloss or a massage gift certificate. Send something fun that might perk them up. Leave flowers for hostess gifts, love, and the birth of babies.
in case i'm gone 
I get some treatment for a chronic (non-life-threatening) condition I have at a pain clinic. I’m not in pain; that’s just where I happen to get treatment. The clinic is multifunctional, and they offer psychiatry and psychotherapy, because very often people who live with chronic pain have to work hard to come to accept their condition and that despite the best treatment available, which should be able to reduce the pain by a significant amount, they will probably hurt and be affected by that for the rest of their lives. The doctors at this clinic consider that acceptance to be just as important to successful treatment as the physical and pharmacological treatments they offer. But I’m told that this is the hardest part of treatment, because people want always to hold on to hope that their condition will be cured, and want to hold on to the image of themselves that they had before pain became a part of their lives. That acceptance can feel like accepting defeat, and that’s a real barrier.
I have PH, dx’d 3 years ago. I hate wearing oxygen, I hate it makes me look sick. But I wear it. Why? Because its not just about me. I still have kids at home, 12 and 17 now.
The message I get here is narcissism. It’s NOT all about you any more, it’s not about how people won’t see you as pretty or vibrant. It’s about how your CHILD deserves to have you around as long as possible. It’s about the responsibility you have to that little person, that when he’s 10 he’s not always visiting mom at the hospital and at 12 at the cemetery.
Its about being there for your family. Not leaving your husband to raise your child by himself, to wonder how much longer you would have lived if you’d just gotten over yourself and used the oxygen.
As you kill off your brain cells on a daily basis, one of the first things to go is your short term memory. Everybody loves the cool mom who forgets to pick her kid up from practice if it’s not set to an alarm on her phone.
This comment probably won’t see the light of day but hopefully you will at least read it. And for just a second, think of someone other than yourself.
Ouch. Well, I can see where you’re coming from, but I should probably clarify that it’s not that oxygen has been prescribed to me and I’m just not doing it. So far it has not. It was suggested for nighttime but my most recent overnight O2 monitoring showed that I’m not even in the realm that insurance will pay for. It is more of a encouraging suggestion that I’m finally willing to try. I should also say that I did do oxygen when I was first sick and it made me really ill. I ended up in the hospital for a week with an inner ear issue called labirinthitis that the oxygen seemed to have caused, so I was very reticent to try it again. If it was a choice between dying or killing brain cells and wearing it, of course there’d be no question that I’d do it, vanity aside. But so far it’s mearly a suggestion that my pulmonologist thinks might help and I’m finally willing to try it again. As far as thinking of someone other than myself, I feel the need to say, that my entire life is devoted to my child and my family. I do everything I can for them and being around for as long as possible is the ultimate goal. I am merely expessing my misgivings and insecurities, and as shallow or silly as they may be, they are my truth. Finally, the idea that I wouldn’t let this response “see the light of day” isn’t me at all. Just because you don’t agree with me, doesn’t mean your opinions aren’t valid or worthwhile. You make a lot of sense and if I was deliberately not taking care of myself, then you would have a right to scold me for being so narcissistic. But, in this case, I think I’m handling everything appropriately and responsibly.
Hi Leigh,
I’ve been thinking about you and was hoping you were feeling ok. That is a beautiful photo of your friend, Shannon. This piece of writing is very moving, and I’m so sorry that you have to deal with PH. You are a fantastic writer, and I appreciate getting to know you through your posts and letters. Sometimes it feels like a small world. You mentioned that you follow Reagan’s Blob, Stories about Birds. I read it too, and she is friends with my nephew’s wife in NYC. It is nice to feel connected to people even if I’ve never met them. I hope you have a good week.
Amy
Hi Leigh
I have been reading your blogs for a little while. I stumbled across them by accident.
I am a Mom, a bit older than you.
Three years ago, I was suddenly diagnosed with breast cancer, Stage III.
At the time, I, like you, was very healthy. I ate blueberries and was a gym rat. The discovery of a lump in my breast was a shock. Then, after a month of going from one scan to another, I was finally told the big C word. WOW. Life certainly does not follow a logical script.
Then, after 4 mos of chemo and surgery, (masectomy), the surgeon informed me that the cancer had spread and was in my lymph nodes. Shortly after that, my oncologist told me the numbers. I had about a 20% chance to live. And if I did not take on an additional round of chemo, I had a 97% chance of the cancer spreading. I felt like she had given me a death sentence.
At the time, my children were in high school, middle school, and the youngest was 7.
I went for a walk around a lake near my house and talked to God. I talk to Him a lot. BTW, I read your blog about being a “church person”, and I totally get what you are saying. I understand taking in the experience of church and the stories and the culture. However, my experience was a little different. Somewhere in my childhood I just started talking to God, (in my thoughts, not some lights and sound mega-experience), and I have always felt that God was listening. Sometimes He answers me back. This also in my thoughts, not an audible voice coming out of the clouds.
So I told Him that I had cancer. He said, “I know.”
I told him that my husband, Gerard, would not be able to take care of the kids.(big sigh). I mean, he could not even sort the socks!
Then I remembered all the times I have been through tragedy in the past. I remembered how God brought me through, even when everything looked bleak and hopeless.
“Do you trust me?” He asked.
“Yes.”
And with that realization, I knew everything would be OK. I am not saying I knew I would get better, I knew I was going to die. But I knew that somehow, after a time of tragedy, everything was going to be OK. I knew God would use it for good.
I am not trying to give you saccharine advice. I got a lot of that. I am not saying that my situation is the same as yours. But I am saying that I know what it feels like to have your toes up to the cliff of eternity, looking down into the abyss, and realizing that you still have a whole lot of life left unlived.
I encourage you to talk to God. He always listens. He’ll hear you. There is a whole other dimension to Christianity than church. Sometimes the church and the culture just get in the way. They can be a distraction to just coming to God and honestly asking for some help.
You’ve got nothing to lose. I tell you this as someone who is seeking to live each day as a gift, talking to Him brings a healing to your soul.
God bless and keep you,
Very Sincerely,
Kathy Dache’
Oh Kathy,
I’m so sorry. I’m sorry for your pain and worry, and for all the anxiety you must be dealing with. I am so glad that you have such a strong relationship to God that you can feel his presence in your life. I thank you for your encouragement to find that relationship to him myself. I do feel, in many ways, that I can feel his presence in my life. Perhaps not as clearly as you but in my own way. I hope that there is still reason to hope in your case. I will hope for you. In the meantime, God bless. I wish you joy and love. xo leigh
Really wonderful post. Thank you Leigh for your honesty.
I just had an afternoon glass of pastis to celebrate Michael being home for 48 hours and I promised myself I would not write a comment until tomorrow…but I can’t stop myself. As usual I have a million things to say, and I might say some of them later…but for now I just need to say thank you. Thank you for writing this blog. Michael and I laughed out loud at your ripped jeans. We marveled at your honesty about wearing oxygen (we are kind of vain too after all) and then he consoled me when I cried as I finally realized the severity of your condition. I always knew…but I think I chose not to know. I just…I know you…I know you’ll be the one who beats it. You’ll be the one who hangs on long enough for that amazing new treatment they’ll discover any day now. Until that happens I feel so honored and grateful to be able to be a part of your life right now. Even if it’s only virtual. So thank you for writing so I can know more, know what’s happening and enjoy one of my most favorite people on the planet.
I love you kid.
X-bets
God bless you Bets. You are a dear and darling friend. I love you.
xo
You, my friend, have amazing strength. Everyone deals differently, and you are downright AMAZING! Thought and prayers for you to stay strong and healthy!
Hello Leigh,
I am a new follower of your blog since hearing you on the PHA Webinar last week. As the Mother and caregiver of my daughter Emily, a beautiful, 31 year old woman who was Dx with PH 5 years ago, I am so grateful for your startling honesty and generosity of spirit. Thank you for this precious gift.
Thank you Ruth. That really means a lot to me. I know how much my being sick affects my mother and I truly wish you nothing but hope and luck and prayers on your journey together. All the very best to Emily too. It’s a tough road sometimes but we’re just going to keep on walking, right? Lots of love to you both. xo leigh
Oh Leigh
Every word of this post resonated for me and I can’t believe I am in tears for someone I don’t really know, but I am and I think you are sensational for being so honest and so cynical and so beautiful. I hate platitudes and disease-related newsletters too, and good on you for resisting what you are expected to do.
Nothing I say can make it better for you, so I am not going to say the usual ‘you are courageous’, ‘am thinking of you’ stuff. Instead I am going to say that your writing is absolutely fantastic, your way of describing your situation is both poetic and slicing and Sean and Loch are so lucky to have you.
Julie
Julie, you could not have said anything more complimentary. Thank you. I appreciate it more than I can say. And thank you for using cynical and beautiful in the same sentence. You clearly get me. xo leigh
Leigh, your honesty is awesome… and your friend is gorgeous! I think you are just as gorgeous, inside and out.
As far as daily, little thoughts about “how will this look?” and “how will people react to me?” you are human after all and what could anyone else expect?
Of course you want to be there for your children! Of course you want to take care of them!
I cannot imagine what you feel each day… physically, mentally and emotionally.
Kudos to you for sharing this with other people.
It’s funny. When you get sick it’s like you’re supposed to be above it all somehow. That the nature of your fragile life is supposed to supersede who you were, or what your feelings or insecurities might have been before. It doesn’t. In some ways that’s good. You’re still you, warts and all, and that’s a comfort. As you said, we’re just human right?
Thank you for noticing. xo leigh
I’m just a 64 yo. widower on O2 for the past 2yrs. I have been Dx with COPD and mild PHD, my wife died of Cancer almost 20 yr’s ago, All my kid’s are grown and live far away. I have to use a walker, to get around. Thank GOD I can Still Drive.
I have been told to Slow Down…But I’ll be Dammed if I am going to let these Problems Slow me down. There is still a lot of Life to be Lived, and I Plan on Living It. (let me change that “PLAN” to an ‘Agenda’) remember if you want to make GOD Laugh tell him your Plans…But Jokes Aside, It comes down to Attitude and Acceptance, I am in a 12 Step Program that has taught me about Acceptance and a GOD of my Understanding. And how to Live Life on Life’s Terms.
So I say to you, use your O2, Get used to It. Learn to Survive, Get an Attitude and I Hope you can Learn Acceptance…May GOD Bless you and your Family…Glenn
Thank you Glenn. Well put from a man who clearly knows a little something about survival. I’m still discovering my way on this path, but I too feel there is still a lot of life to be lived and I intend to be living it, O2 or not. I’m just working through it all step by step. God bless. xo leigh
Dear Leigh. I have been reading your blog for a while now and find you extremely honest and just plain human. We all have bad days, terrible days and days when we feel on top of the world. I feel that if the balance of our days is mostly good and we feel content then something is going right. The truth is that none of us know when or how we will die – I could trip and fall down stairs – I could go under a bus (and I really could as about 6 routes run past our house). When I was younger I would suffer from mild depression and found the best way to cope was to just go with it. I would spend the weekend in bed reading books, crying, moaning, eating what I wanted and just letting it be. For me it did always pass. When I had children and found myself a single mum I didn’t have the luxury of spending time in bed and that would be tough – somehow the children pulled me through with a kind word or a smile or saying something funny and just making me get on with it.
About seven years ago when the children were quite young I had a virus that doctors could not find a name for and on top of this I had a severe allergic reaction to the antibiotics prescribed for me. I ended up with a very tiny field of vision, unable to walk, so tired and unable to do even simple chores. This only lasted about 6 weeks although getting back to somewhere near normal took over a year. I suddenly understood what it felt like to be mobility impaired. The pavement (sidewalk) kerb felt like a mountain. Crossing the road took an age with cars impatient for you to get out of their way. At the time I didn’t know if I would ever recover, ever be able to take the children to the park again – without vision I couldn’t make sure they didn’t wander off and just getting there would take more energy than I could muster. It was scary and the children didn’t understand what was happening and I was unpleasant to look at as my corneas were sagging out of my eyes and had gone orange!!! I was lucky it did pass and I had fantastic support from friends and neighbours. It doesn’t matter if some days are awful because others will be wonderful and special and treasures to hold to for the rest of our lives. Your son will get a chance to know the real you through your blog in a way that normal life doesn’t provide even if you live to a really old age (which of course is possible, no-one knows). We all find ourselves scared of the future at some point but living one day at a time and trusting our instinct to tell us what to do next will get us through.
JC
Oh my Lord. You went through all that as a single mother? That’s unbelievable. What a harrowing experience. I am so glad you’ve found yourself on the other side. Living one day at a time. That’s the key right? It’s so hard not to look forward. Plan ahead. Live for your tomorrows. It’s something I could probably work harder at. Plan for the future but live for today. Thank you JC.
Leigh, I am wondering if they have ever tested you for sleep apnea. Before I knew I had PH I began snoring loudly and waking up frequently. I was going to a pulmonologist as I was having frequent bouts of pneumonia. She had me tested and ordered me a cpap. When it was discovered that I have PAH she added oxygen at night and gave me a portable unit as well. There are days I can funciton fine with no oxygen and others that I need it. I have never allowed my family to take a picture of me while wearing oxygen. I have been reprimanded by strangers when using my portable for smoking and I smile and say “I have never smoked.” I have never tried illegal drugs either. I know PHA has little cards you can order and give to people that explain PH to save you the embarassment or trouble. I am so glad I found your blog. It is wonderful. Wishing you happy and healthy days ahead, Nelle
Reprimanded by strangers!?! Honestly, what nerve! I did get tested for apnea and no, I don’t have it. Good thought though. Thanks for all the positive thoughts. I really appreciate it. xo leigh
Dude, you all balls. Seriously, I know you better from your blog than from 20 + years of friendship! That could be because we live on opposite sides of the world, though… I applaud your honesty, sweetheart. We can’t move on until we know where we’re at. And it takes a big ball of courage to say exactly where you’re at, out loud. Or in print.
As a friend of mine would say ‘Oh my gawd’ … I have tears streaming down my cheeks. I sometimes forget that so many others are really having a hard time with this disease and that for us ‘some days are REALLY better than others.’ I was born with a serious congenital heart disease with serious lung problems. Many of us survivors are being called pioneers because we’ve survived complex surgeries or because we have lived this long. Adding PH to my condition was not something I expected at all considering how challenging my life had been since I was born. But I think what has kept me going is the same zeal, drive, determination that you seem to have and which you so eloquently express through the words in this blog. I don’t know how long I have to live but I do know it’s getting worse and finding your blog is just one of those things that I call serendipity because I’ve been looking for hopeful and encouraging words that can cheer me up (or make me cry) during these difficult times.
Cheers!
AnnieB.
BTW – I used the electric car in the supermarket for this first time yesterday and my body was so grateful. Sometimes we have to do what’s best for us no matter what we or others think or say.
Oh Annie, thank you for your kind words. I’m glad you could find something to connect to. It sounds like you’ve been dealt a hell of a hand and the fact that you’re handling it with such aplomb is a testament to you and the tenacity that has obviously kept you around on your good days and bad. I’m sorry to hear it’s getting worse. If it makes you feel any better, I saw my specialist last week and she told me that my last tests were a “blip” and she saw no need for me to go forward with the oxygen. It was wonderful and unexpected good news and it is my hope that you find yourself in the same position – where it looks like you’re getting worse and you are happily surprised in the opposite direction. All my very best wishes! xo leigh
I quite like reading a post that will make people think.
Also, thanks for allowing me to comment!