I know I’m sick. Obviously, I know.
I know I’m sick because it changed my life. Having PH stole my ability to have more children, drains my family’s finances and emotions and forces us to live under the constant stress of my potential death. That being said however, I’ve always felt lucky. I live as close to normal a life as I can possibly hope for. I’m not on daily oxygen, I don’t have a port in my heart, I eat what I like (though I should probably be more aware), and I’m able to play an active part in almost every aspect of my life.
I may get more tired than most, have a hard time with humidity and changing barometric pressure and, because I already live under a high level of stress, have a tendency to freak out more than necessary when things go awry, but I feel blessed. I could be dead by now. I was told I would be, and yet here I sit blathering on about my life in the hopes that my words will someday connect with my son and, for now, to others who may be interested.
Even knowing all this, I’ve found I can still be surprised and flattened by the reality of my situation. My illness continues to teach me something all the time.
For the holidays I planned a trip to Mammoth for my family (visiting parents included). I can’t ski anymore but Sean and Loch love it so it seemed like a special way to spend Thanksgiving. I pictured my boys happily shushing down the slopes while my parents and I reconnected roaming around the village, reading by the fire, and relaxing in the sun and snow. I planned the trip six months ago. I found a lovely three bedroom cabin, booked lessons and rentals for Loch and planned out the meals with my mom. The day before Thanksgiving my whole family piled into our car, complete with new roof rack storage bag and Christmas presents, and started our drive to the mountains. As an afterthought we included an R2D2 looking oxygen concentrator just in case I had any trouble with the altitude. I wasn’t particularly concerned. We’ve been to Big Bear quite a few times and I’ve never had a problem, but since Mammoth is 2000 feet higher I thought it would be better to be safe than sorry. Little did I know….
The drive was amazing with straight, open roads and America the beautiful stretched out before us. Mountains, plains and red rocks as far as the eye could see, almost all of it uninhabited. If I didn’t know better I would have guessed we were in Montana or some other Big Sky territory. With about 45 minutes left in our trip we stopped at a fabulous bakery for sandwiches and talked about our plans for the mountains. Then, about a half way into the last leg of or trip, I started to feel off. It felt as if I was breathing through a snorkel, labored and unnatural. When we arrived at our rental I took my blood oxygen level right away. You want your oxygen saturation levels to be in the 90’s. Preferably the very upper 90’s, around 97-100%. Exercise and exertion will drop your levels temporarily but they always bounce back. I typically fluctuate between 94-98% at rest and drop to 87-89% during “exercise” like walking (82-85% if I’m feeling crazy and try to walk and talk at the same time) but I always snap right back to the 90’s after I stop moving. Here, in the parking lot of our rental unit I was at 83% at rest and it felt extremely uncomfortable. I sat uselessly in the cold of the outside structure waiting for my family to unload the car. When the car was empty Sean walked me upstairs and, with that minimal exertion, my levels dropped to the 70’s. My snorkel had become a straw and it was truly frightening. Sean worked fast and had me on the oxygen concentrator as soon as he could. It was all I could do to just sit down and regulate.
So there I was, a blob on the couch, tethered to the wall, unable to help or contribute in any way. Conversation was beyond my capacity. Even with oxygen, my levels were still in the 80’s and I felt miserable. In the span of a half hour I became a completely different person, and that person was really sick. As I said before, I knew I was sick, I just didn’t know I was this sick and the altitude cleared that right up for me. At one point I got up to put on warmer clothes. As I walked to the bedroom my head whipped back twice as my oxygen tube got stuck first on the fooseball table and then again on the doorknob to my room. It was infuriating and depressing. In frustration I ripped the cannula out of my nose and changed without it, but when I started to feel lightheaded I found my oxygen levels had dropped to a dangerous 69%. I was dizzy and nauseous but mostly I was really scared.
Mind over matter right? I’d planned this trip. We’d driven seven hours to get here. I’d booked three full days of non-refundable lessons. We’d prepaid our unit. Everyone was counting on it. No matter how terrible I felt I had to man up. I just had to adjust.
But I couldn’t adjust. As the night continued I felt worse and worse. The oxygen concentrator kept my immobile body at 90-91% but it was terrible. The slightest movement dropped my levels exponentially and I felt trapped, like I was confined to a box unable to move. I tried to join everyone for dinner and catching a glimpse of myself in the dining room mirror, I saw a person I didn’t recognize. An ashen faced girl with a tube attached to her face. There was no way I could eat. At the very least, chewing limited my ability to breathe. Eventually I gave up and moved back to the sofa. I texted my doctor and his advice was clear. Leave. Go home. You shouldn’t be there. He said he would try and find someone to get me a portable oxygen concentrator but it would be difficult seeing it was a holiday. I told him even if I got one it wouldn’t be useful. The slightest movement made me light headed. Talking was a struggle. I certainly wasn’t walking around the village or going out for dinner any time soon.
I struggled with what I should do. I felt responsible for everyone’s good time. I’d planned this trip after all and we’d waste so much money if we bailed. I didn’t want to disappoint Loch or my parents and I wasn’t even sure what we’d do for five days with no plan back in LA. But when Sean asked me what I wanted to do, I couldn’t help myself, self preservation usurped socialization and I burst into tears. I told him I had to leave, I wanted to go home. That I couldn’t take it. It felt like I was dying and it was torture. I knew my choice would ruin it for everyone but as far as I could see there was no choice. I was physically forced to put my needs above everyone else’s and I couldn’t second guess it.
To everyone’s credit, no one made me feel bad about my decision. In full support and without a hint of complaint, everything that had been unpacked was repacked and loaded into the car. I spent the night dozing on the sofa, too afraid to lie down flat to sleep and Sean lay on the floor by my head. He could have slept on the other sofa but he said it felt too far away. He wanted to be close if I needed him. Loch was disappointed but rallied as best as a 5-year old can. Opening all his Christmas presents from my parents helped.
After breathing, Lochlan’s reaction to the situation was my biggest concern. I knew he’d get over the disappointment of not skiing, but this was the first time he’d really witnessed how sick I was and I could tell it was scaring him. At one point he came over and quietly said, “I look at you and I think you can die from this. Can you die from this?” I said, “I hope not baby.” Then he said, “If you die I’ll just cry and cry.” I said, “I’ll cry too baby.” He looked confused and responded, “How can you cry? You’ll be dead.” I said, “I’ll be crying in heaven because I’ll miss you so much.” The whole conversation took less than a minute and it almost killed me. He was so sweet and understanding but I could see the hints of confusion and fear on the periphery. I told Sean I was afraid Loch would either start to see me as a burden, someone who’s illness ruins his good time, or shut me out as a form of self protection, in hopes of making my leaving him in the future less painful. Either way it broke my heart.
At one point Loch woke up crying and it roused me from sleep. I went to his room but Sean, already there, silently encouraged me out of the room. Later he told me he was trying to help me, to let me know he had it under control and I shouldn’t worry, but what I felt in that moment was that Loch didn’t want me. That he was crying because I’d disappointed him and Sean was attempting to protect me from the hurtful things he was saying. Lying on the sofa listening to my child cry was devastating. His sobs made me feel helpless and crushed. I imagined this must be what it feels like to die and leave your children behind. To be an angel in the room watching someone else comforting them but unable to help because you’re gone and also the cause. I fell asleep crying for what might be.
As we drove down the mountain the next day I apologized for ruining the trip, but I wasn’t sorry we were leaving. About 2000 feet down, it was as if my power had been turned back on. The straw was gone and I could finally breath normally. The lower we travelled the better I felt and by the last 3 hours you could almost forget I’d been sick at all.
I thought I knew how lucky I was. I thought it was enough to conceptualize how much worse I could be. But until I felt it so clearly in my own body I didn’t truly understand. I might be looking at a future without mountains or cities at altitude, but at least I’m still able to hope for a future. The whole hideous process was a reminder of how wonderful my life is. How much I have to lose and how, despite all my awareness, I can still be reminded of how much I take for granted. It also showed me that there are times in life when we have to put ourselves first, not out of selfishness, but out of self preservation and there’s no shame in it. It’s hard to admit weakness and ask for help, but you have to respect yourself enough to protect yourself, and you don’t have to be sick to do it.
I am thankful for a lot of things: my wonderful husband who’s there to protect me even though he can’t fix me, my darling son who’s heart I will do everything in my power not to break, my parents who’s company I still crave despite the fact we’re all adults and have our own way of doing things, but most of all, I’m thankful for the fact that I’m still here, as me – not some sad, sick version of myself. My life is blessed. I’m angry and scared as hell but I’m lucky. If this weekend was a wake up call, I heard it and I’ll do my best to appreciate it for all it’s worth.
Love and blessings to you and yours for health and happiness.
You got me again. I am not sure why your posts always find their way to me and whisper exactly what I need to hear at that moment, but they do and I thank you. I am so sorry the trip was cut short, but the one thing I know about kids, having two older ones at home, is that are resilient and have short term memory. Thank god! 😉
Tears in my eyes Leigh. Thinking of your Mom and Dad and how scared they must have been. I’m sure you are sorry about the shortened trip, but I believe that everyone involved is much happier to have gone home with you earlier than expected rather than have had to take you home another way! God Bless you and your family.
Leigh what a fantastic post – moved me to tears. How scary for you all. You have a wonderful gift to write what you experience and feel – lessons for Loch and every person lucky enough to be touched by you. xo
I know you father and through him I got the chance to know you every time a little bit more. I always cry with your blog, I can’t help to imagine what I would feel in your shoes leaving my three children behind.
I admire you for your courage and positive attitude that you have, despite of the possible outcome. I’m sure that when Lock grows as an adult he will be very proud of his mother.
I’m sorry I make you cry Gisela, but I want you to know I am doing my very best to not have to leave anyone behind just yet. I love my life…warts and all. I am blessed and honored to be here. Thank you for supporting my writing and taking the time to reach out. I sincerely appreciate the thoughts. Love to you and your 3 children. xo leigh
Hi Darling: Isn’t it amazing how the scariest of situations can actually teach you something, and help you put things into perspective? Who cares about a curtailed skiing holiday? You are alive.
That I am Laurie. That I am. xo leigh
You’ve reminded me to slow down and enjoy my husband and children, especially when I think I’m having a bad day. I can’t imagine what you are going through, Leigh. Thank you for sharing. My thoughts are with you, your beautiful son, husband, and wonderful parents. I remember what genuine and kind people they are from when we were in high school.
How lovely that you remember my parents Michelle. They are genuine and kind people. I was truly blessed in the parental department. It’s hard to slow down. I don’t often do it until I’m collapsing. But it’s important and we all need the reminder sometimes. Thanks for supporting my writing. It really touches me. Happy holidays to you and your beautiful family. Here’s to more good days than bad! xo
Hi Leigh: How wonderful for you to spend Thanksgiving with your nearest and dearest family. Maybe you didn’t share a “perfect’ vacation, but you were all together which is the true spirit of Thanksgiving. I don’t think the decision to return home was a sign of weakness. It took strength and courage to put yourself first. Loch may have been disappointed..after all he is just a kid….but you didn’t let your son down. Once again, you showed him the way. How blessed he is to have you as his Mom. With deep affection- from your friend and neighbour in Toronto.
PS So glad your health was restored as you”came down the mountain” 🙂
Thank you Bev. We actually had a lovely weekend at the end of it all. It wasn’t what we’d planned but we were, as you said, together and happy to be so. Thank you for your continued support. It really means the world to me. Happy Christmas to you and yours from LA to ON. xoxo leigh
I have both Lupus and Lambert Eaton Myasthenic Syndrome, and though I now feel as if I’m alomst healthy, it can be frightening. I was diagnosed with LEMS when my sons were finishing Kindergarten and 3rd grade and am so grateful that they’re now in their senior and freshman years of college. You’re right – enjoy the blessings you have . . and be careful to preserve them longer.
Oh Ginny, how wonderful you’ve made it with your boys all the way to college! Please let that be me. College and beyond right?! Thank you for reading. Please continue to stay healthy and positive. I really appreciate your support. xo leigh
Oh Leigh! What a hard wake up call! Feel so grateful you’re felling better!
Me too Em. Thanks. Love to all!! Thanks for reading! xo leigh
“Rolling with the punches” is my biggest life lesson as I also live with PH. I started wearing oxygen (all the time) a year and a half ago and have taken about 5 trips away from home since then. There is always something that doesn’t go as planned. At times, it is disappointing and extremely frustrating. I’ve also learned that those you love and those who love you only want you to be comfortable and safe.
Your very raw, honest exchange with your little boy is heartbreaking and heart-lifting at the same time. He spoke to you so openly and you were completely there with him through that. I admire that. I will hold your courage with me in anticipation of my children’s (3 yr old twins and a 7 yr old) questions and worries.
Thank you for your words.
Thank you for your response Amanda. It means a lot to me to hear from other PH-ers. I’m sorry you had to start wearing oxygen all the time last year. I know in the grand scheme of things it’s not a big deal, and I’m sure you’ve become used to it in a way, but it’s a drag and I just want you to know I feel for you. You seem to be handling it beautifully. Please keep in touch or keep reading. My very best wishes are with you. xo leigh
How scary for you and your family. I’m glad going lower helped.
Me too Chicklette. Me too. xo leigh
Finding the blessings within your very difficult struggle is something that will always enlighten your life. Maybe sometimes as we are determined to live life to the fullest, we must also be reminded of our vulnerability as a way to keep us safe. I’m so sorry that your trip was cut short.
Out of about 160 blogs that I follow, yours was the first. There are reasons for this….your courage and your dedication to those you love as well as the sincerity in which you tell your story, so openly and honestly. Loch is a lucky little man to have you as his mother. I wish you health and happiness always.
Of 160 blogs you follow I was the first? That’s lovely and I have to thank you for not moving on but sticking with me through this journey. I sincerely appreciate the support. Thank you a million. xo leigh
Leigh, you are an inspiration to us all. Enjoy every bit of your family to the fullest!
~ kim messina
Thank you Kim. That’s incredibly kind. I don’t feel I deserve such praise but I’m happy to take it. I know it was given with love. Thank you. xo leigh
When I see you I forget you have PH. Then reading this I cry and also know what an incredible family you have. You are brave and I’m so comforted you are surrounded by so much love.
Am touched by the courage and how deep you words speak. You are a strong person. Bless you!